+Conversations in Time.

2008-05-15T15:35:00.000-07:00

Happy Easter

2008-03-23T10:01:00.000-07:00

Thank you all so much for all of your comments.

I'm checked out today from my residential treatment facility with laptop to my apartment till 3:00. I keep my laptop hidden at the house (residence), and need to find a cafe close but not too close, to the house where I can use the computer both to reconnect here, and also to study and research for the HIV services planning council I am still managing the process of getting elected to--talking people into changing involuntary hospital commitments to voluntary status... in order to not miss mandatory meetings and trainings--by making the case that my two-year self commitment to this goal is an essential part of of my stabilization (survival), too, despite--or maybe in part because of--its intensity. Once I can formally inducted I can have excused absences. I am not sure either that considering my stability hour to hour I wouldn't be better off in the hospital right now than The House, but I can't afford to lose my freedom till the meeting the Monday after this.

I am very sensitive to my surroundings and it has been hard to find a place where I can concentrate to work toward getting/catching up to speed. (Including this apartment.) I feel extremely disoriented.

There is so much to write about, and I miss you all and this process, but I need this rare time alone with my cat at the moment to work on re-bonding with her. When I came over here yesterday, I had to leave because she wouldn't come out of the closet with me here. My cat-sitter will be back here at 2:00 to pick us up, return me, and take Sophia in her cage back up to Santa Rosa to his place.

There is so much to write about. (My magazine article is out, and I'm curious about any response to it next month).

I am trying extremely hard but not very smoothly to keep up and comply with what other people decide what is best for me, too.

Thanks again for checking in on me. I hope you all are doing well.

I look forward to visiting your blogs soon.

Love.

Coming back soon.

2008-02-19T14:01:00.000-08:00

Unable to post so far, but outlook is improving for access. Perhaps in a few days. Thank you all so much for continuing to visit and for your thoughts. It means so much.

Update for Friends of +PHc

2008-02-12T08:58:00.000-08:00

Posted by Catsitter: Visited with +PHc on Monday. She moved from San Francisco General Hospital on Saturday to a 90-day residential treatment program located in a large Victorian house not far from Golden Gate Park. There is no access to a computer in the house and for the first seven days she will not be able to leave the house other than for doctors' appointments. Next week, she hopes to be able to visit a nearby library and have access to a computer. This is a very difficult time. She is getting your messages and is looking forward to being back in touch with you all as soon as she can. She truly misses being in touch with you directly. Sophia is doing fine but misses her very much. Thanks for your thoughts and prayers!

Please keep checking in.

2008-02-11T05:35:00.000-08:00

Need and appreciate your comments. May be able to post directly this weekend.

Residential treatment so far difficult. No solitude. Constant accompaniment. Have to ask permissions for utensils. Strong need to get out and move. . . walk far. . .

Forced socialization must be like solitary confinement to others.

Thank you.

2008-02-06T19:15:00.000-08:00

Your responses mean a lot to me. I should be discharged soon. I am not supposed to be alone so while on a waiting list for a residential program I will be probably staying with generous catsitter and will have access to a computer again. Whatever the treatment program is, they are sending representatives tomorrow for an interview. I don’t know if I will have computer access there but I would be away from my cat for probably 2 months.

Update

2008-02-04T19:07:00.000-08:00

The 5150 expired this afternoon. They could have reinstated the 5150 but offered voluntary commitment instead but highly recommended a couple of more days. Earned patio privileges but will not be earning laptop privileges. Thanks again for your thoughts and hope you are all doing well.

Not sure when will be out.

2008-02-03T20:09:00.000-08:00

I don't know what to say yet but thanks to everyone for the comments.

In Hospital

2008-02-01T17:31:00.000-08:00

Will write when can .

/ the cat sitter.

Minutes - edited for clarity, with relevant addenda (i. e. first posted too soon, and not sure what I can say about other people anonymously)

2008-01-29T19:01:00.000-08:00

I wrote in my post "Rainbow Wishes" about, after recovery from what was just a heavy-duty cold that had me very wobbly getting out of bed at all for three days, that I suddenly felt a burst of need to be involved in HIV health care planning processes again after a years-long, dark hiatus. Participation on the CARE Council had been an intimidating idea lingering vaguely on the edges of my personal planning for a long time. I should by now, but don't know enough about the council to know if is a good fit for my experiences/efforts/concerns but I know that being increasingly shut out of health care and well-being services (and now rest-rooms) over the years, that pertain to me, that those people most like me (long term survivors) are not excluded from, has affected my identity and self worth in a way that has made me become someone I don't want to be in many ways - including, angry, shut down, and reclusive. I am at a point where I am doing well enough and poorly enough (in my estimation) that it is time to throw my self back in the whatever-it-is.

My application to the CARE Council went well. The bio/resume construction that I had listed in the sidebar of this blog as a goal that I had put off - that I thought if I posted publicly here as a goal I might be more pressured to follow through with assembling (for another opportunity) - I followed through with for this, and submitted to both. (Creating a bio/resume doesn't sound like that big a deal, but I did work legitimately for many years in nontraditional ways, and I didn't keep records because when my physical health was precarious - albeit for many unplanned years, I wasn't thinking through those times in terms of surviving long enough to ever require records for anything. Everything was present tense even though that present tense continued. And now I've stalled for a long, long time in a way invisible to most, to be able to make a sense of past and future in order to build a life that feels on par with others (most people) who did not live through those years that way.

I hadn't predicted this post would be going this direction, or that I would be plugging anything here, but there is an agency in San Francisco that I have worked with off and on which helps people with HIV/AIDS who once had successful careers they lost and who have trouble now that (for many) their health is good, but they have huge gaps in their history they can't explain without disclosing more than they want or are leally required to do, and who don't know or can't, catch up to where they once were. The agency is called Positive Resource Center, and works with the depression (yes that word again) of starting over, loss of past identity, with training and retraining and updating training, life direction assessment, benefits counseling (in case of possibility of relapse), coordination with the Department of Rehabilitation and with employment agencies in which HIV disclosure (or employment history gap) is not an issue. Besides being extremely sexist/orientationist in language and programing (in my opinion), they are by far one of the best agencies AIDS Service Organizations in the city. My point is that I am not the only one stuck in a limbo of abilities and desire to be responsible (and of service), and stuck in a tar pit of aspects of living with the paradox of relative physical health and HIV disease. I am stuck more than some by not fitting demographic stereotypes programs designed to help are designed for - and I was so young when I got sick - when I was physically sick - that I didn't have work history to lose (- that I would claim).

The second opportunity I needed a resume/bio for, other than the Care Council I am going to remain private about for now.

My casual initial interview with the membership committee representative of the coucil went well. Seeing people (one not since 15 years ago) went smoothly, although he had memories of working together that I don't. (Like he remembers speaking to the 49's together. It seems like that would be something I would recall, but then halfway walking home - stupid to e doing at 9Pm - I had a very hazy memory of being mixed in with them on a field - half with red T-shirts so we made a big human red ribbon on the field).

Watching the CARE Coucil meeting I felt both intimidated and competently qualified if concentration/memory will be reliable. (I am having symptoms from the un-recommended nighttime Geodon cutback, but I, so far, am managing those symptoms by being able to remember that I don't have certain thoughts/impulses when I do take it.)

I am not sure where I belong, but came away from witnessing this first council meeting knowing it is time to be involved again somewhere - but that I might be able to have more impact on a smaller community advisory board of an agency I am a client of, if possible. (Maybe both if involvement turns out to be reviving.) I will go to some of the committee meetings, and the steering committee to get a feel for things.

(AND I actually came away from a call asking for a reference for this application from a person I very much look up to - with an invitation to lunch. She used to be the deputy Executive Director of the agency I would like to be - am burning to be - on the community advisory board of - if they still have one.)

I know I don't want to do fund-raising or direct prevention work anymore again ever. (Allocation of funds toward effective prevention efforts - yes - which is how the counsil works.)

Goal-wise, moving forward-wise, traditional education still matters to me very much.

One person I saw at the council meeting who I've crossed paths with over the years, divulged (personally at the break) some very similar problems to mine, (who is having to take Alzheimer's medication for long-term HIV cognitive degeneration - has to write everything down) - but is serving on this council, volunteering, and managing to take a couple classes, and says otherwise can't get out of bed at all. That that/this is all there is. I know I could not do all at once - but I was inspired to hear the degree of difficulties managed. We exchanged numbers for a coffee sometime.

I will have to be more private here when more public again. But want freedom of expression. I will try to find a way to find a balance. I would not like to resign this blog to invitation only. Accessibility matters. It makes my living matter.

Application

2008-01-28T04:27:00.001-08:00

Rainbow Wishes

2008-01-24T19:08:00.000-08:00

Thank you for all the rainbows. I tried several and found I may not be quite ready for a rainbow just yet. Testing things out. Although this is the idea that I couldn't expand size of). (But has to be pale enough for whole template, too. - but might be, as is, with this light grey text.) I'm collecting options in a future header folder.

I love real rainbows. And rainbow symbols, when they stand for inclusion.

My cold (heavy duty cold) since Saturday has started to lift just in time for my downtown job tomorrow. (And I am not taking my 80 mg Geodon tonight. I'm not doing that again. I'll take the lower-dose ones during the day, and deal with the energy roller-coaster. But I want to sleep tonight, and wake up in the morning, and go to downtown work, and play normal for a day.)

I did something very bipolar today after being bed bound for three days. I started the process of running for a city council position (the San Francisco HIV Services Planning Council), in vernacular, the Care Council.

I had a good phone interview today with the council's training manager. The role wouldn't require more work than the board of the San Francisco AIDS Foundation, which I handled well for six years, several years ago. I can't regulate enough to keep up with any consistent day-to-day work, and I feel worse mentally now, but I do have abilities, and a lot of relevant experience, although I would be a minority voice in the extreme since I'm not in line with any women's HIV groups that I have found, but I believe what I have to say matters and isn't being said anywhere, and not speaking is making me sick, maybe sicker. And have been in the past capable of pulling it together for intensely involved brief spans of scheduled time, and this would require one three hour meeting a month, and one two hour committee meeting a month plus retreats - same as the Foundation's requirements. It is more public in that the three hour deliberations are open to public audience (whereas the Foundation had private meetings with scheduled public commentary), - but this would be less public, in that it wouldn't require media representation, formal public speaking, and fundraising schmoozing with way too many, way too important people - which was as exhilarating as it was confusing and destabilizing at the Foundation.

I don't know if I am up to the kind of involvement I threw myself into when I thought I was dying (years ago). But it also may be that I need that kind of parsed intensity of involvement for my well-being, like Jenji's quoting Hellen Keller in yesterday's comments that "true happiness comes through fidelity to a worthy purpose." It is my nature to do things in the extreme or to retreat in extreme. I need to be able to coordinate my "natural" or "ill" rhythms with fidelity to worthy purpose, to be at peace. I thought writing here was to some degree a worthy purpose I could maintain fidelity to, but am still affected by the criticisms I was offered that what I write is just self-serving. Even though others have said otherwise.

I was emailed a five page application to fill out to bring to the Care Cousil's next meeting which I am to witness on Monday (at the LGBT Center which does not feel appropriate to me, although they are generous with their space to other groups as well, including women with HIV/AIDS regardless of sexual orientation), (but this is usually in a city building in the Civic Center) - and I don't even have a printer.

I am running to raise awareness of demographic discrimination and to "fight for" -[my Lent - my Love]- "work toward"- inclusiveness in HIV mental health, social support services, and community building for people who do not already have communities - for (ultimately) creation of an HIV/AIDS community of inclusiveness of every single human body with HIV in it.

I believe in discrimination. I don't believe "discrimination" - meaning to be discriminating, is a bad word - and I believe it is appropriate, necessary, and right for epidemiological prediction, and prevention programs and outreach to target specific groups. But once a body of any human kind has HIV in it, I do not believe it is alright to exclude them from human need services on the basis of not fitting a demographic category of a group determined to have your needs in more number.

And for, specifically and personally, a UCSF AIDS Service Organization (AIDS Health Project) funded to serve HIV+ PEOPLE to deny a person coming in for an HIV test without even offering her individual risk assessment, because she doesn't fit the highest group risk demographic no matter what her risks may have been, when a possibly low risk gay man is offered the medical procedure he seeks no matter what, is unethical and unconscionable, - and blamed, along with other things seeming like problems to me, by the agency, on the Care Counsil which determines allocation of funding to the service agencies. So if I don't have the leverage of at least being an effort on that council my words are ineffectual at that agency (which just, over the Christmas holiday removed the women's restroom. There is now a unisex/disabled restroom where the men's room used to be, and a men's sign on the door of the women's room I have gone to for years to collect myself after hard appointments before facing the outside world. I'm sure, now, that there were practicalities involved in that decision making, but at that day, coming in from a storm to wipe of my face before an appointment, in a restroom that rarely had anyone in it, a kind of unintended sanctuary space for years, and to be told, "No," from down the hall, "Wait you can't go in there," by the receptionist, and see a big brightly colored men's sign in my face, was kind of a last straw. I'm not going to say what I did.
I am not being pessimistic. My Lent - my Love. And AHP has supported and stood up for me on personal terms more than any other agency has. And provides valuable services to the people it provides them to, including psychotherapy and psychiatry to me.

What I mean is (to continue in non-negative tone is): HIV testing and counseling service programs at "non-exclusive" AIDS Service Organizations could be redesigned and expanded such that funding be allocated to advertise testing and test counseling to highest risk groups, as they are, but such that no woman is denied and referred away who comes in anyway and walks up to the front desk and says, "I need an HIV test" without at least assessing and counseling her first. Maybe she has more than good enough reason to think she's infected. Maybe she's never going to work up the nerve to go ask for a test again someplace else. - But will keep on thinking it. - Will quit going to doctors altogether. Take her while you have her.

I am the only HIV+ woman I've ever heard of who doesn't care about segregated (always to be lesser here) women's services, although I respect the preferences and needs of women who do. For whatever healthy or repressed, angry, stubborn, too hurt, or random reasons, - what I am passionate about is inclusiveness of HIV services that do pertain to human needs indiscriminately. And I better stop here with that.

12 Days Left of My Own Mistimed Lent

2008-01-23T14:03:00.000-08:00

I'm celebrating Tati's and Merlyme's recent Love theme energy by giving up negativity as much as possible for the rest of My Own Lent - which I was completely backwards about (corrected by Sarah in last post comments) - thinking it ended with the relief of Mardi Gras. In Christianity, King Cake Season begins with Epiphany (the three kings finding the baby) and ends with Mardi Gras, (February 5th), - which is the purging before the renunciation season of Lent which begins Ash Wednesday, (February 6th), and lasts to Easter (March23rd). My Lent is all out of order and not necessarily Christian at all, but happening now because I believe in periodic renunciation as self awareness practice, and I believe in practiced appreciation of what is not me, and Merelyme started it. My Lenten renunciation doesn't mean I'm giving up expression of how things are, or were - for me, even if difficult. But quelling negative reactions, pessimism, inside and outside can be an important part of Love. So Merlyme's Love Fest, for me, my Lent, is in congruence with King Cake Season. Ha. If King Cake Season is about finding the baby Jesus, it should be the twelve days of Christmas to Epiphany anyway, not the other way around, so it's exactly backwards to start with.

I need help finding a photograph of a full long rainbow in a dark sky to use as my header - like the one at this site: Fighting the Urge but without the trees. (I'll ask Ruth if she minds me copying her temporarily.)

Kiss My King Cake

2008-01-20T13:26:00.001-08:00

Thank you all for all the supportive comments on the Geodon Insomnia post. I couldn't believe all the support. I'm better in that I feel better, I can think straight, but it is two in the morning again. I woke up at midnight. I'm waiting for two sleeping pills to kick in so I can make it to my therapist tomorrow.

Update: I couldn't make it to my appointment because some of the flu-like side-effects that can come from Geodon - which I was blaming them on turned out to be a really bad genuine cold, so I'm sorry I didn't get this post up earlier. I've been working on it little bits at a time for a few days:

As for kissing King Cake:

I got a present yesterday. [Now already three days ago.] This was worth getting up out of my semi-coma. (See my red insomniac eyes behind the feathers of my profile pic).

You probably didn't notice that the fog streak of my blog header title desription ends with "homesickness." (Or that the first two words of the first post of this blog are "Greta Perry."

Well,... fellow Shameless Lion awardee, blog owner of Kiss My Gumbo, Greta Perry, Queen of homesickness relief care packages - (she runs the Louisiana chapter of the national organization Soldiers' Angels which matches volunteers with specific soldiers to send care packages and letters to - more later in this post about that) - sent me a heavy Mardi Gras care package consisting of Orpheus parade beads, newspapers from New Orleans proper and Northshore of Lake Ponchetrain (where she lives in Mandeville), feather mask, and a KING CAKE! addressed to my blogger user name "caretaker."

My camera is still sticky from taking the pictures while it lasted.

If there are any New Franciscan San Orleneans other than me you might appreciate an ad page advertising "A NEW WAY TO SAY LOVE ME" sale at "thehimstore," on the same page as Rouses King Cakes ("KING CAKE HOTLINE" 1-800-5998.)

For those of you who don't know, New Orleans was my first home, and stays my "heart home," and as good as San Francisco has been at keeping me alive, if New Orleans had the medical care, and if I could contribute more than my needs would cost it, New Orleans would be where I lived now, even though my relationship to it is really a child's. I know street names, but not how they fit together from the driver's seat. I haven't gone back much until this last summer when I went twice, once to visit, once to house-sit for a cousin, and gut and built houses for families still living in their front yards (or stuck in Houston) or separated from each other strewn around the country in other easier places that will never be the same. (Another plug: I you ever want to volunteer in New Orleans for a week - or a long weekend or whatever, and you want your hard work to go to the greatest effect, no matter who you are or what you believe, it's the churches that have their shit together, specifically Episcopal Disaster Relief. You will be trained and put to work at the same time and you will fall into an effortless and overwhelming state of Love. Click the link just to see the picture. I worked on that house. The kids got to pick out any colors of paint they wanted.

So besides linking you to the history of King Cake through Wikipedia here, which I'm not going to read till I write this, [Update: definitely interesting and worth reading] I'm going to tell you my eight-year-old understanding of it.

First of all, as a child Mardi Gras was at least as important as Christmas. And much richer and more complex a tradition than anything like Girls Gone Wild in PART of the French Quarter - which is not all Girls Gone Wild either - not that I have anything against girls gone wild (I wish them good luck, health, and wellbeing) - it's just not at all representative of Mardi Gras tradition and culture. (Look up the Indian Parade if you want to know a fascinating aspect of the culture that lasts year round to show itself for a couple days, and then tears itself down for reassembly bead by bead generation after generation, same beads - look it up. I didn't have luck finding a good enough site. They're secretive.) It's sacred.

As an adult I don't know where we are in Lent, (and I don't know if King Cakes end at Ash Wednesday, or skip over it to Fat Tuesday or if they're supposed to end at Epiphany), but I know that according to the King King Cakes website, there are 14 days 22 hours 51 minutes and 29 seconds to be done with it (Lent) on their Mardi Gras countdown clock as I write this.

As a child I knew that every Sunday between Christmas and Mardi Gras at our church, Christ's Church Cathedral's after-service coffee hour there would be giant King Cakes - big loop shaped cakes that were more like bread-like than cake (the "traditional" King Cake has apparently undergone many changes in my long life-time.) King Cake always tasted the same, and had the same texture my first eight years. There was no filling, no frosting, just this big loop of bread with purple, gold, and green sugar on top delineating where the pieces should be cut. (Purple, gold, and green are the official colors of the city of New Orleans - not of Mardi Gras or Carnival - mistake in Wikipedia on that).

There was one little plastic baby Jesus baked inside the cake in an in an unknown piece, and whoever got that piece, got the baby Jesus and everybody clapped and that person was King for the week (it didn't matter if you were female) until the next week when the King brought the next Sunday's Cake, and so on. And on Mardi Gras we had reserved bleachers in the front yard of the church on 2912 St. Charles Avenue, or I sat on my father's shoulders to catch colorful light plastic flutes and whistles and little toys, and doubloons were the real prize, but what I loved is, way back then, not all the beads were plastic. They still threw some of the old Checkslovakian glass beads. (I don't know anything about the history of why the original glass beads were Checkslovakian, but they were. They were all stripey and clear. Or smokey. And my father would put me down to put them around my neck.

I wasn't told, when I was moved to Houston right before my eighth birthday, that Mardi Gras wouldn't exist. I thought it happened everywhere like Christmas, and losing it was at least as traumatic as losing good child-Christmas would have been. My family celebrated it, Mardi Gras, to some degree anyway in Houston - our big bowl of doubloons from different Krewes different years on the coffee table. Probably cocktail parties I don't remember, or all blurred into one long vague memory. Almost always good food. (All year. Gumbo sometimes. Shrimp Creole fairly often. Bread Pudding with Rum sauce. Spoon Bread. Grits which we called little "hominy". We thought people who didn't know what it was called it "grits".) But no Mardi Gras. Just like that.

So opening Greta Perry's Mardi Gras care package, now three days ago, was like opening a big fat Christmas stocking (which was even more needed since I skipped Christmas this year.) The King Cake was not what I expected - with all the icing and cinnamon like a big sweet roll, (according to my brother that tradition was starting in the early nineties when he and his wife were living in a trailer in the nutra-rat swamps of Thibodeaux while he was serving a stint for Teach For America - one more plug squeezed in - not for the nutra-rats).

Back to this King Cake:

This little 2008 Greta Perry anatomically correct King Cake Baby was stuck to the outside of the Cake instead of baked into various misshapenness on the inside. Maybe it's a liablity thing. They don't want anyone dying choking on the baby Jesus. Although that kind of liability sounds more San Francisco than New Orleans - which I'm pretty sure still has drive-thru Daquiri stands.

Here is the King Cake baby Jesus as he came, clinging for dear life on his way to San Francisco:

Here is the 2008 Greta Perry anatomically correct baby Jesus compared to a saved cooked old-fashioned one. It even has a belly-button:

(They come in white, pink, and brown. I'm hoping for a brown one next time. - I'm hoping to BE there next time.)

I'm ending this post now, without creative transition, by saying that care packages really matter. And the work that Greta Perry does to make sure soldiers away from home get them really matters. It's about caring and homesickness. I said in the beginning of this blog that I would sign up for it. The commitment is to send a letter a week (and we're all pretty-regular writers out here anyway), and to send a little - or big heavy one like mine - care package either once or twice a month (I can't remember) for a predetermined stint of time. I am not going to commit to this way of doing it because I am having such difficulty doing basic living in a reliable way, and I wouldn't want to fail at honoring that resposibility - but Greta said there was a baking group, and I love to cook and don't because I don't have anyone to cook for, so I'm going to see how that works - if you can be just a kind of on-call baker.

Soldiers' Angels had really good support over Christmas, but, sadly, right now they have a lot more men and women serving signed up on a waiting list, than they have volunteers willing and able to give them what they are asking for. (Soldiers' Angels motto is "May No Soldier Go Unloved.") If you are at all interested in either committing to do this for six months or so, OR are interested in getting the word out there that it is needed, please check them out at soldiersangels.org. Ignore anything you might not like about any of it and remember the simplicity of what it is for.

Geodon and Insomnia

2008-01-19T03:43:00.000-08:00

Does anyone else out there take Geodon (antipsychotic/mood stabilizer), and do they experience completely unpredictable sped-up-ness and then very strong sedation cycling so that it is either great or a serious problem one way or another for someone who is trying as best she can to organize her life, which, for, this person, can not be done without reliable sleep cycles taking precedence?

Geodon is the only drug of it's ilk that I can take side-effect-wise even though that is the one I od-ed on trying to play it by ear. [reference tomorrow] Too much... too little.... I'm strongly inclined to try to wean myself off it, against the advise of everyone who knows me. I understand that it is very helpful when it is helpful. But it's 3:52 in the morning. I did my work (my real work - see last post "Work") downtown yesterday till 5:30 PM, hiked up the cable car line home again (since I didn't stamp my transportation card this month again) (I did get that ticket taken care of [will link refer that too) tidied the place and the cat with my cat-sitter on his way home, ate my frozen cannelloni, called my brother to say hello and ask a tech question, took my antivirals, Geodon, fell asleep without Ambien (- which is good because I want to save them because Geodon also seems to cancel them out so sometimes I need more than one - which also might have been part of that od sedation). I did everything right and I am wide fucking awake. I tried. I tried letting sleep sink in from the somnolent cat curled around my chest.

I've been doing the Saturday part of my work in the mornings - still not early like most people are capable, but morning. Thankfully tomorrow, he (my cat-sitter doesn't need me till 1:00 PM, but this is really pissing me off because I'm trying to do everything right. And morning is going to suck now 1:00 PM or not. OK I'm taking another Ambien (against the rules because I took one an hour ago) but sometimes they seem to have no effect all - only with the Geodon. Otherwise they are heavenly reliable.

I'm sorry to be complaining. If I weren't really trying, it wouldn't matter. I'd just sleep when I can, and not venture too far from the apartment alone for when the sedation hits.

I am, wishing everyone else better luck, though.

Work

2008-01-18T20:19:00.000-08:00

I'm very wound up and in the mood to write about my day today - to be present tense. And to maybe add an if-y photograph I took. And to change things around. A little hypomanic. But I have my job tomorrow. So sleep has to work. (I've been working on Saturday mornings and during the week on my own time - all for the same project). But on Fridays I get to work in a real office in a formal building downtown - which is good for me (besides that I learn a lot) because it makes the "real" people seem like real people. - All more qualified - but human - which feels like it makes me breathe a little differently.

Nothing's for money. It's all barter - for car-ride-requiring errands, and cat-sitting (- which required medical training, and is high maintenance because of my cat's kidney disease and her weight right now) - which will allow me to go visit my family next month since I couldn't for Christmas. I can't afford to board my cat with infusion costs even though KD [see cast of characters in sidebar] offers vet expense help (which otherwise would be my greatest expense). I trust the people at my cat clinic, but I don't want her in a cage.

I'll write about today tomorrow, and I'll write about my work once I have something to show for it.

Telling Then

2008-01-16T05:37:00.000-08:00

These two stories/vignettes go together. If you're going to read one, please read them both. They were published in The SUN Magazine September 1997 as part of a series under different titles. (Thank you to those of you who answered questions at the end of yesterday's post "The Telling Now." Your answers told me a lot).

1991

The customer was sitting in a dark corner of the bar. He looked paler and more alone than usual, and was wearing a suit. There was a bonsai tree on the table in front of him. I'd had too much to drink the night before (stupid, stupid, stupid) and had told him - a customer - about me.

Back in those days, I didn't see any option but to keep my illness a secret at my job, until I could make enough money to go far away, discretely, for good. Now I was going to fuck it all up telling customers - when I didn't even have any friends I could trust. It was hard enough to lie already; my heart wasn't in it. How was I going to continue working with him sitting there knowing?

I bummed a cigarette from a bartender who said he was a writer. Then I walked over to the man's table, sat down, and lit the cigarette with the candle by the tree, the flame warming my face.

"What's with the little tree?" I asked.

"It's for you. For luck and long life."

I closed my eyes.

He said, "I'm never coming back to one of these places again."

"You know," I said, "It has nothing to do with this place."

"I don't care," he said. "I love you."

1992

"You have something important to tell me?" my mother said.

She was cupping water in her hands and spilling it with unbearable sweetness, like a baptism, over the dying bonsai tree in the kitchen sink. I wanted to scream.

My brother had quietly orchestrated the whole thing, flying in from New Orleans and arranging for Mom and my stepfather to come. They were so happy to finally see where I lived. I'd been out of touch for years.

My brother hadn't pushed or questioned me all weekend, until a few minutes ago, an hour before they were to leave. Taking me aside, he'd said, "Now. Tell them now."

"I cannot do it, " I'd said. "I can't."

So he'd arranged that, too.

"You have something important to tell me?' my mother was saying.

I was sitting in my window seat in the warm, paned light, watching the water spill from my mother's fingers onto the brown tree.

"I'm HIV-positive."

My mother kept cupping the water, tears now streaming down her cheeks and dropping on the tree.

"Charles."she said, her voice steady but loud. My stepfather was in the other room. "Charles."

He came in.

"She has something to tell you."

"What is it honey?" he asked, a smile on his face as if expecting a joke.

I couldn't find my voice.

"HIV," my mother said.

"Oh - " his voice breaking - "honey...."

The Telling Now

2008-01-15T23:00:00.000-08:00

[Update update: ...in the morning - way too tired right now. -

Update: New questions added at bottom of post. Couldn't find exact statistics I said I'd find. Both stories introduced here will be posted together tonight.]

OK. I'm going to try to write about my own life again. Because I believe it matters, too. And that writing about it matters. I don't know how, but it does. This post is an explanatory introduction to two "pieces," to follow.

Background for presenting these two peices: Anyone who's been following this blog the last month knows about a recent personal crisis I'm recovering from that had to do, in part, with my fears in trying to deal with a long-term "friend"'s lack of urgency to get tested for HIV after having had unprotected with me. I will have had HIV 22 years as of next month to the best of my knowledge (based on symptoms, although I wasn't tested until October of 1991, when my immune system was already significantly impaired and an ex-boyfriend died). I am well-educated (and educating) about HIV transmission risks, as is my "friend". We took a conscious adult risk to be with each other unprotected, knowing that risk of vaginal transmission is very low (not zero), and even lower when viral-load (free-floating, non-dormant viral particles in blood or fluids) is low or undetectable. My medicines the last few years, regarding that, have been effective. My viral-load, with one small blip, has been undetectable for the last three years. [I will find most updated female to male transmission stats here tomorrow.] I was scared and upset that my "friend" waited what felt like an unnecessarily-interminable amount of time to be tested. My "friend" was just being practical, believing rationally that whatever happened had already happened or not, and that there was no reason to not wait for a doctor's appointment already soon scheduled, required by his work, which included an HIV-test requirement. And I didn't understand and was upset that even then, at the appointment, there was no reason to my "friend" to ask for rapid testing (HIV results within one hour), but to him, it was fine to wait the ten days it would take to get the results of the full panel of all results. We knew the result would come back on a Friday, January 4 or the next Monday, so I assumed when I didn't hear from him on Friday, that the result hadn't come in yet - rather than that he hadn't seen reason to call me about it till another day had passed. I had suggested knowing sooner, but I hadn't pushed him. I felt it was his body and his decision. There was nothing unusual maybe with his reaction to HIV-testing present-tense.

Relevance for my including these two pieces now: It's just that my reaction to the process of testing, and getting results, and disclosing those results to other people affected is not present-tense. My reactions are in 1991 and 1992. There was no "rapid testing" and a positive result did not mean what it means means now. And I haven't been through this since then to get over it. And as many years as my "friend" has known me, he has no reason to understand all that goes with that.

Writing Disclaimer: My natural way of writing is not to explain (or justify) like I have thus far in this introduction. My natural way of writing is quilt-like. Small pieces of very direct experience. Vignettes, swatches of straight-forward dialogue, email exchanges as they are, to be interpreted as they will. To speak for themselves in the context of each other. It feels like its harder to lose the truth that way, although most people like to be told something that they can then either agree or disagree on to find truth, instead of seeing what happens, when you let yourself be surrounded by all the little articles. (But maybe that 's why I'm on antipsychotics.) I've had English teachers say, "Some of your writing is really unusually good, but I can't do anything with this paper because there is no thesis at all that I could find (although you have a good one articulated in the right place that you didn't use, although you refer to it periodically), and I really tried to naturally come up through it all some way to bind it into one because you have some interesting and worthy ideas, but I just can't get it to go together." That happens in my writing most when things matter to me beyond what I can find language for. Like my posting my "friend"'s email of his good negative result, to great criticism and later support. And like my lack of ability to speak all I had to say behind what I did say (and also post) to my "friend"'s good news, too.

So now for these two torn shapes of fabric I'm introducing here, "Telling 1991," and, "Telling 1992," - they are not about behavior, or risk, or symptoms, or testing in itself, or results, or illness and death in themselves. They don't have a point. They are just about the telling - in 1991, and in 1992.

Permissions: And, KNOW NOW that the people in the stories who I have any way of reaching have been told what I am telling on my blog here now about it, and they support my telling whole-heartedly, as did my "friend" for me for this one waning month.

"Telling 1991" and "Telling 1992" to be told without delay...

Questions that would help me if you answered any of (I'm not asking for a report - just answering one would help. And it's fine with me if answers are anonymous - if they're real answers and if they are answers to the questions I am asking):

If you thought you had been exposed to HIV, but knew you were at low risk statistically (and you wouldn't be at risk of exposing someone else at all for at least a couple months), would rapid testing (results in one hour) be something you would want? Would it be important to you?

What would play into your answer, (like would you prefer some time to get used to the idea first? Would you be scared? Would you be able to just not worry knowing the risk was low, and get tested at your next scheduled doctor's appointment instead? What would play into your decision-making?)

Have you ever been HIV tested just to be sure, or as a job requirement? Was the process daunting even if you knew you were more than likely negative?

If your test came back positive (regardless of risk behavior), would you keep the result to yourself for awhile to get used to it? What people in your life would you tell first? How would you tell them, if you can imagine it? Would you lie about it to anyone who knew you got tested so they wouldn't worry? [And no - I'm not asking that because I think that has happened to me, although a long time ago I was not told - for whatever reasons (I'm not blaming) - even though several people knew I probably had it from an ex-relationship that had lasted three years with someone who knew he had AIDS at some point. I didn't find out till I was told he was dead. I didn't get the chance to tell him that I didn't blame him, or, if he needed it, that I forgave him for a bad break-up, or that I loved him, or goodbye.]

Breaking the Shameless Lions' Rules

2008-01-13T19:10:00.000-08:00

Please see update below yesterday's text. I will be writing soon.

I'm breaking the Shameless Lions Writing Circle Rules by awarding The Roar For Powerful Words to a fourth recipient. I'm conflicted about these awards things, because it meant so much to me that Whimsy would nominate me when she did, but I don't know who's appropriate to pass it on to - when it's the feeling behind it that matters.

So this fourth Lion - I'm not even going to tell her I'm giving it to her, but I hope you will know why I am if you read her whole post What I Did For Love. That's all I'm going to say.

LION UPDATE:

Susan (author of If you're going through hell keep going - great name) WAS very happy to receive her Shameless Lions' Roar For Powerful Words Award, and I think needs and deserves our ongoing support.

The Shameless Lions Writers Circle

2008-01-11T21:21:00.000-08:00

A big thank you goes out to Whimsy for passing on to me the Shameless Lions Writers Circle Award. Please check out her blog and read her incredible story. Like she said about CS who awarded it to her, there is good reason Whimsy won this award.

I, like Whimsy, believe words can be powerful things. I believe that words can be lifesaving things to isolated people, or for people trying to reach out to isolated people, and that the blogosphere offers opportunities (although sometimes risky) for sharing our lives in ways that don't exist elsewhere. And that those opportunities matter.

In honor of those shared beliefs, I am in turn supposed to pass on this award to three of my fellow bloggers:

So, first of all, I would like to award Greta Perry who extends more energy I knew it was possible for one person to have, in many ways including active support of economic recovery in the New Orleans area in the ways she can; running the Louisiana Chapter of Soldiers' Angels (a national organization which matches volunteers with individual soldiers who the volunteers send weekly letters and monthly care packages to; sharing care with her family including her husband who is a veteran from Iraq; She is now recovering from a difficult surgical procedure, and authoring three passionately outspoken blogs, my favorite - in the spirit of a bright pink, shamelessly roaring lion award: Kiss My Gumbo.

The second person I am passing on the "A Roar For Powerful Words" award to is Dream Writer, author of the blog "Coming Out of the Dark," who writes about her courageous fight with extremely difficult symptoms of bipolar disorder, and complicated medical protocols to treat it. She, unlike I would be able, keeps her challenges private from her family and people in her life. She saves her strong words for us through her candid blog. She deserves support in her decision to go forward with her education despite a hard battle with severe depression.

The third I am hesitant about because he is dealing with so much that I don't know that acknowledgment of his courageous communication through this kind of award would mean much to him, or maybe his wife or the people supporting him. And I want people to know about him but don't know how much readership he would like. But I'm going to take the chance that he might understand the respect and caring I feel for him - stranger that I am - and would like to share. This award to him would not be about shameless words, but about lion-hearted courage. He is struggling with the most extreme symptoms of ALS and has difficulty even keeping his airway open, but writes a couple sentences every day on his blog to express the experiences of his daily life. His blog is Brainhell.

New Confidentiality Question

2008-01-10T18:45:00.000-08:00

I have a hard time dealing with the fact that at my mental health clinic, AIDS Health Project, the conversations with my therapist and psychiatrist called "confidential" are actually reviewed by a "care team" or "crisis team" of people I don't know - which has absolutely been helpful in emergencies, or off-hours. But the access to my therapy notes, even if useful, feels over-exposing. I don't have a question about that. I accept it.

But - in my blogrolls section (low in sidebar), under the category "Mental Health Blogs", there is a category titled "Questionable Mental Health Blog" which lists a blog called "The Therapist Mumbles". This blog consists of a psychotherapist posting his or her therapy notes about his or her clients - anonymously. Which content certainly could be learned from and possibly helpful to a reader in similar, or different circumstance to or from a client. The - anonymous - publicity could also elicit or break trust in some reader getting help through therapy, though.

What do you think about it?

"'Results' Results" Results

2008-01-09T16:59:00.000-08:00

Re: last post: "'Results' Results"

Thank you for your feedback.

I will not ever post an email again. I would like to explain why I did - not as justification - I was wrong - but as explanation, but first I do want to make it clear that "my friend" knows my writing this way is profoundly therapeutic for me and he cares about me that way, and he said to me, as I said in earlier posts, "Write anything you want to write [anonymously] that would be helpful to you," and he promised to not read it for this one month so that he would be in no way inhibiting.

Why I posted the emails (his and mine), rather than discussed my personal reactions to the whole situation, was that I didn't know what my reaction was - past the profound relief he was HIV-negative. I had a lot of conflicting emotions about his casual-seeming reactions to testing (when that's just the way he is) and conflicting emotions about a lot of things about a part of my life that is rare and precious and gone. The closest confidant I have was traveling and out of contact, I have no one close here to talk to, my family members care, but are far away and busy with their lives and didn't get it how strongly I felt, and my therapist was unavailable.

I did not know how to respond to "my frend's" email, except in the way that I did in mine - which I didn't know was not wrong in itself. I did not know what to say about any of it and was completely overtaken by it all. And did something that wasn't alright. Just put it out there as it was for whatever that meant which I still don't understand.

"Results" Results

2008-01-08T18:03:00.000-08:00

I need to know how people who have followed any of my recent life personally or bloggerly responded to my Saturday post "Results" It would really help me if anyone would answer any of these questions:

Where you so statistically sure that my "friend" would be HIV- that you didn't think his telling me a whole day after he knew that he was OK was that big a deal?

Did you think from his email that he does not take transmission risk seriously - or take my response to the results, or our situation, seriously?

Did you think it was wrong for me to post the emails?

Did you think it violated his privacy for me to post them even though our worlds do not cross over and the very few people we know in common don't know I write at all?

Did the whole situation make you uncomfortable? Was it too directly real? Too private?

Do you not understand my need to write all this out in this format because I feel so invisible, taken for granted, and alone with all these feelings?

Did you feel relief with me?

Do you not understand my anger towards him from what you know?

Do you judge me for the transmission risk in the first place?

Are you not involved enough to care (I'm not judging - just really asking)?

Is this too far away from your realities to relate?

Are you just very busy and forgot (- for people who know me).

Did you who did not respond not respond because you were unsure how to respond to transcriptions of emails rather than to my directly speaking about it?

Did you think I don't put my soul into the writing and need some real response back? - when it's important - not all the time - I understand people travel and live busy lives, and are not all bloggers. I'm just talking about when it really matters.

Do you have any questions for me? (besides Merelyme's which I apologize I hadn't answered until now -)

These were the questions she asked me first thing:

Are you mostly relieved he was negative?

Yes.

Are you angry about his relationship with another?

No. We have had this relationship for over ten years where we have intense, very real, very honest, very realistic romantic week or two week interlude every year or two when our lives and lacks of other relationships have coincided. We respected and did not discuss each other's other relationships, and we made no promises to be broken of any kind. We used to both have relationships in between times. I haven't in the last six years (minus one bad two-night stand [see posts "Risk and Disclosure"]. This is the first time, we have had unprotected sex which was the most unexpected redeeming, humanizing, normalizing, good, exciting, beautifully close experience I have had in the last 21 of my HIV+ years. For him I guess it was just good sex - I am the only person he has up to now been safe with. He hates condoms. What I am mad about is that for some reason he decided, maybe because we did feel closer that he had the obligation to tell me the specifics of a "legitimate relationship" he is going to all the way to Afghanistan to "test out." I am mad that he didn't respect that he has no exclusivity obligations what-so-ever and has in the past respected my natural human feelings by being private to me about the relationships he can be public about. (I am a secret).

Merlyme then commented that it would seem I have a lot of conflicting emotions.

I have a lot of conflicting emotions. This is the most excruciatingly intimate time he could have chosen to suddenly disclose specifics, when she is the only one who needs to know specifics (about me) if he is not - and probably won't - be safe with her.

Merelyme lastly asked: At this point in your life... what kind of relationship do you want to have with someone?

I want what we had. My life is extremely high maintenance psychologically, psychiatrically, and physically. I can pull it together, with a lot of effort for about a maximum of two weeks at a time - to be my best - to be myself - to be who I would be able to be without all these problems. And we were very compatible and equal in the islands of time we shared. I don't want someone taking care of me. Knowing name and specifics about another who can be compatible in real life for longer or maybe ongoing spans of time before I even know how he is? I wanted it to continue the way it was - or end with the dignity of time. Not punctured like this.

The only other kind of relationship I would want would be with a long-term survivor with proclivities, and problems similar to mine. Equality matters to me. But there is no HIV/AIDS community to meet people in if you're not gay, and the POZ Match dating services are great, but I don't feel comfortable meeting anyone that way, and the only ones I have either had extreme (especially sexual) boundary issues problems, or addictions I'm not up to dealing with, or were gay (openly or implied) - who wanted families (which is great but my sexual identity is too wounded to go near that), or are actively Catholic which I don't trust - maybe wrongly - for the same reason.

If it doesn't speak for itself, this photo is here because I wish we could be seen at the same time. And I wish that I could feel that way again.

Gallo's Humor

2008-01-07T20:31:00.000-08:00

Fellow blogger Polar Bear left a comment on fellow blogger Merlyme's description of depression in Merlyme's post "Light And Then Dark", about the importance of humor in the midst of pain, so here is my attempt:

After my "friend"'s duly concerning HIV test came back negative on Friday, and my third period (in two months) let me know again and again that I am not pregnant, with all those conflicting emotions - this is the persisting physical evidence of my very romantic desert vacation with him

- my stubbed toe hit hard on a step at a little hotel in Mexican Hat, Utah, according to my travel diary - October 29th.

Results

2008-01-05T17:13:00.000-08:00

Email to me from my "friend" in Antwerp today [see post "On Hold"]:

hey ____,

test came in negative.. that's a good thing.

hope you are doing well. am off to GVA for my afghanistan
briefing on Mon, prob won't leave until much later this month,
will try and catch u sometime later this week

xX

My response to him:

______,

I am so relieved the test is negative, although some worry will linger over the next months till you can know absolutely. Yes, "That's a good thing."

It was an unnecessarily hurtful mistake to tell me specifically who you are going to Afghanistan for when all is still so familiar and there was still the bleed-thorough of not even knowing yet how you are. I have never asked for any kind of obligation from you. And I have never been in denial that you have relationships I wish were possible for me to have in between times.

I have never expected to see you again any of the times you have left. Or even expected to hear from you. I have just been happy when you've shown up. Only you are the one who says, "Next time...." even to Bryce Canyon.

If you hadn't felt the need to let me know about her (_________?) and just said, "I'm going to Kabul," that would be disturbing enough in itself. But I'm used to that.

If we didn't speak specifically about relationships (as we haven't) - or speak or keep in touch at all for a year, and then you called suddenly and said, "I'm with someone... we're living together... we're having a child together... we're committed to each other....," I would be envious in the way that I am envious of anyone who has those things, and it would take some adjustment, but I would be able to be happy for you.

Waiting to tell me about _________ would have spared me this pain, and would have allowed me the dignity to be happy for you whatever the circumstances would or will turn out to be with whomever, whenever.

Don't try to "catch me sometime later this week." I don't want to talk to you.

If you're not going to be safe over the next five months, you have the obligation to tell her.

Love through it all, too,
____

Tested

2008-01-03T00:06:00.000-08:00

An email to me Dec. 31, from my "friend" in Antwerp:

hey sweet you
went to Trop Institute this morning,
saw great doctor, when I told
him about us sleeping together he had
real down to earth reaction, he would
get along with George
[my psychiatrist at AIDS Health Project],
I'm sure..

test results should be in on Fri or Mon,
will let you know when I know.

Hope you're doing ok after our phone
conversation.. it makes me sad to make
you sad..

much much love,

Frayed

2008-01-01T18:06:00.001-08:00

Some online dictionaries have separate definitions for the words "fray" and "frey", but the Pocket Oxford English Dictionary has many meanings for "fray," and there is no "frey."

According to the OED, "Fray" comes from Old French afrayer 'disturb.' It can mean: 1 (of a fabric, rope, or cord) unravel or become worn at the edge. 2 (of a persons nerves or temper) show the effects of strain. - Then there are other disruptions, collisions, and entanglements (as in deers' antlers), and, archaically, to make afraid, or scare off.

Last night, to scare off past years, I found the sharpest scissors I have and I went in the bathroom to look in the mirror for some reason (I couldn't see as I tried to cut my braid off). For some gris-gris reason I had to cut the braid off, since that is the way I always wear it. I couldn't unbind it first and then cut strand by strand with dull scissors, looking in the mirror a way I don't look to myself in the process. I had to have the whole braid in my hand.

I gnawed and gnawed as hard as I could with those scissors and now one third of my hair is frayed. I thought of the loss I feel now, of when last year, when I was psychotic [I will find at least one post reference for this (I am also working, with difficulty, at creating a filing or category system for all that I have written so post reference interjections won't be necessary)], I had to throw away my papers and diaries and keepsakes and give my grandparents' bed back to my mother, as part of some kind of exorcism. I at least had the wherewithal last night, the whenwithal, to know that I don't want to feel later about this, the ways I feel now about most of that. So I quit trying.

I've been hoping today, that in observance of the first day of the new year, I would unbind the braid and wash the strands, and re-braid, but I don't think that is going to happen, either. I have an appointment with my psychiatrist tomorrow, so I will have to move in a way that will create momentum to get things like that done afterwards.

The milk hasn't soured yet so I haven't had to go out for my cafe au lait, and I found enough quarters here to do laundry without having to go out to a store to ask for some. I'm allowed here to use the laundry room in the basement until 10:30, so maybe I will go down there sometime in the hours left.

Nightline

2007-12-31T16:27:00.000-08:00

I'm still writing, clarifying the last post, "On Hold". I did call the HIV/AIDS suicide/crisis hotline (AIDS/HIV Nightline) last night (since my therapist and psychiatrist are obviously "on holiday") and the man I spoke with was not as helpful as the other two were when I've called before - except to say that nothing I think, or do, is going to change what has medically already happened or not transmission-wise.

And he also said that whatever other feelings I have about it don't mean that I can't still cherish the memory, too.

That doesn't mean I'm not cutting my hair short. There is no place open today (and my hair is not clean enough right now to go to someone) and I don't know if I have anything sharp enough, and I'm too tired to get out of bed.

I know I'm not the only one who feels cut off and I wish I could make my blog rounds wishing well for another year.

On Hold

2007-12-30T22:25:00.000-08:00

I said in yesterday's post that I was going to write a little about my concerns about an upcoming potentially contentious, and extremely personal article I sold to a magazine from a blog post here.

But my "friend" from Antwerp [see Cast of Characters in sidebar] whose relationship with me is so good, and unusual, and difficult to explain - called today. So I need to write about that instead.

I will not be able to write this well now and will coordinate it all somehow when I don't feel like I feel like I do.

I was online and had checked my statmeter and there was the little Belgian flag under the category of Who's On. Since his reading this blog has been a point of contention for awhile now [see post "Circuity, the Solstice "] for a while now, but since he had backed off for a while as I had asked, I actually started missing that little flag, that knowing he was thinking about me, checking in - even though it inhibits things I need need need to be able to express here.

When I saw that he was online on my site I thought about calling, which I have never done, - just to tease him that I caught him in the act. And then the phone rang. It was a good connection this time. He said Hey and I said Hey you're on my site, and it lightened it up a bit.

We had a long conversation of things we know, but don't discuss, but that have been brought up by sideways references in writing here that he has read. I can't (am not able yet) to talk about what we discussed.

He did acknowledge the helpfulness this kind of writing has been for me, and said that he supported it (which I had thought he had put down - that it was "a superficial intimacy" - but he said that was before he started reading what was here). So that helped. Other people I know "in the real world" know this address, and the open information has definitely affected relationships in easing and difficult ways, but this my "friend" is the only person through which part or who I am has been expressed in years, and those are all things that are completely affected by my core affliction, and I need need need to write about it here, in privacy from him, included in the patchwork quilt of the rest of my life. I can't just leave it out.

I can not put into words how much this hurts, and what causes the hurt is what I want - from him. I can say that now because we have an agreement that he would not read this at all for a little while. He said he didn't want to inhibit something helpful, and asked how long I needed. I said one month. It wouldn't even take that long to say what I want to say "out-loud" here, but it'll take a little while to adjust to the idea that this really is my space. I probably won't want to erase it at all afterwards either - tear it out, definitely won't, so after this period of a month, even when he is allowed back on, I will just have to trust him not to come back to here. That would be difficult for me in reverse.

He gets tested tomorrow. He has had this compartmentalized relationship with me for over ten years. We are intensely together a week or two every year or two (the last three visits were road trips) and we hardly speak in between, and ask no questions, for the most part. I have been fine knowing he surely has relationships, even though I don't have. This last trip [see post " Return From the Desert "] is the only time we had were unprotected. He started it and I didn't stop it. And I kept expecting him to. It was like being taken over by an angel. I've been 'good' about that my whole HIV-known life. I couldn't stop something that felt so good and so redemptive and accepted. And to think that something that holy feeling is normal for most people? To take in a part of who someone is? He is being offered a mission (International Red Cross) in Afghanistan. Where he has a relationship. He told me her name. [that's what I was talking about when I said something has changed, he's changing something. [see post "The Day After Christmas"] - It was that he was specific. And I didn't know why he would be, and I was completely supporting - as I should and would want to be. He said he felt he should tell me. But that is when I got depressed. Because I didn't know why. I didn't know if he was telling me because this particular named relationship was some new kind, or just because he realized and was acknowledging how profoundly close I'd felt to him since the first night and morning of that trip in a way that I don't think I knew was possible.] He hasn't seen her in a long time, and he doesn't know where they now stand, but they've been in touch. And it could be potentially exclusive. He doesn't like the working conditions in Kabul. The reason o go there (he has his choices of missions) is to be with her.

A real legitimate relationship that would fit his real life. not the compartments of our incomparable road trips.

He has to have full medical before and after missions. He says he usually gets the results of all the tests (I don't know what else he gets tested for) in about ten days.

You can't know for sure that you don't have HIV till six months, but you can find out fast if you do. I told him about rapid same-day (HIV) testing which he didn't know about before our trip, but he seemed unconcerned. I mean he wants to know obviously but he's not worried. He promised he'd let me know when he knew.

I didn't want to cry. He said he would feel the same in reverse, but there is no reverse. How can he even think he knows what that means - and please God he never does. If there were such a thing as prayer I would be asking as many people as possible to pray that I have not infected my "friend." I cannot take this all at the same time. I'm cutting my hair off short tomorrow for some kind of superstitious prayer or punishment, so he can be safely with other people not my kind. The clean people. If he were my kind we could be together and never have to worry about it that way and that is such an evil thought and I love him and would never want to want this to anyone. Oh God. We never say "love." He says mmy name, you are very dear to me."

Exposed by Me

2007-12-29T22:15:00.000-08:00

More to follow here (this post)...gradually. As explanation, I've referred a couple times to an article from this blog I sold to a magazine. It's not a big deal - except to me - I've done bigger deals in the past (see "Newsweek in time"). My content in this upcoming article was personal in a way I would not have written unvieled from the blog. So I feel extremely vulnerable about it but also driven to say what I want to say when offered this opportunity, which is frighteningly taboo (which is why they noticed it) - and unintentionally potentially hurtful, but I will write more about the piece itself in the next post.

This post is about the photo shoot, which was really scary, and which I was very unprepared for. The magazine requires a full page photograph, and although I want my concern to be about what I said, I also want the photo to go with and enhance what I said, and to represent me (- which it will by my unpreparedness!). I didn't feel good so hadn't even washed in hair in a couple of days. (I did wear make-up which is rare.) The weather was bad so we had to do the shoot in my dark little apartment, which makes the whole thing more intimate (BUT, on the bright side, it meant not only free - but PAID portraits of my cat with me! - so I'm trying to stay focused on that, if all else fails.) My apartment had all kind of random things around I wouldn't have wanted around. And I accidentally bleached the only shirt I felt comfortable doing this in, right before the photographer (Tony Burditt) got there. So I wore pink - which I never wear - but which is definitely relevant to the article (and pale enough to pass for ivory).

I had asked the magazine if I would be able to see the layout before other people I don't know were going to see it just to feel more secure about it, and they said no, but the photographer was nice enough to send me the raw copies of the whole shoot. So what I'm doing is altering them thoroughly and making a creative game of it (like did you notice how cool the top of the curtains look on that first one?) and publishing my version first (gradually) so I will feel some control over the process. I realize that since I have trepidation about linking my face to my words here,too, this project might be counterproductive, but I'm unimportant enough to be able to un-publish this if it feels like too much.

That was probably an unnecessary prelude, but here is some of my version of my photo shoot:

Go To Bed

2007-12-29T21:09:00.000-08:00

My soft beeper has gone off that I'm supposed to be asleep, but I want to write.

I need to give myself my antivirals, my cat her infusion (which we tried earlier, but she got away with the needle still stuck in her scruff), put on pajamas, and go to bed.

The dinner with my cousin and her husband was nice. Christmas-y. It is so easy to enjoy feeling love for my family, and for myself in their company, as one of them.

Conversation was easy. Not light, but easy. We are all very glad about my newly-pregnant other cousin being so strong about standing on her own two feet about her not-good-for-her-ex-fiance. Everyone is in agreement on that, in a caring way, not a gossipy or mean way to him. A little baffled, but not mean. The baby's going to have our family name, and our entire extensive, traditional, organized-pedigree-chart, shot-gun wedding family are, somehow, all like, "You go, girl." She wanted a baby so badly, and tried so hard for so long. When she finally broke up with him, she conceived, and when she finally gets settled as a mother with her successful career, and realizes she doesn't need a husband at all, we're all divining that a good man for her will show up.

I wish giving up was all it took for some of the rest of us.

I had a glass of Pinot Grigio (which is definitely better than Valium), but I don't think it will be a problem. I'm not going out to buy any bottles of it.

Going Out

2007-12-29T14:12:00.000-08:00

One of my cousins who lives in Boston area is in town with her husband whose mother lives here. I see them here once a year and in Tennessee for family occasions. She wants to get together at 4:30 for lunch/dinner. I'm scared. I'm feeling better but I don't feel ready to be around someone, or even up to bathing for that matter. And I will be tempted to have a glass of wine if I go. One glass of wine should not hurt, and I've often gone through long periods of not keeping alcohol in my apartment, or having it here (as long as it's not wine) and not drinking it, or only drinking at dinner with other people. But I don't know how I am now, so I probably shouldn't. It's the first time I've been tempted though. Valium affects the same brain receptor and doesn't compromise immune function the way alcohol very much does, and I'm allowed up to four low-dose Valiums a day if they're spaced at least an hour apart, but I don't want to take them unless I'm really freaking.

It will probably be a good thing. To get out. To be with good family. Since this will be my only family for me (other than my cat) this Christmas/New Years. I'm really scared. The only things for the year I have to talk about are my work-trips to New Orleans (which are too intense and too much to start), my Southwest trip with my "friend" from Belgium (which is too painful right now for reason I'll disclose soon) work for my cat-sitter's publisher (which didn't happen yesterday), and my upcoming magazine article which I feel very vulnerable, although hopeful, about.

The magazine article is something I want to talk about here, because it feels so out of my hands at this point although the editor, in New York, is working with me very respectfully and conscientiously. I want to post here my own, cropped and altered photos from the raw photo shoot, since I have no choices about what photo (full page) they will choose to use or how, or how sensitive to it being relevant to the article they will be. I don't want to be a good "face of AIDS" with faded print. I want the photo to make you want to read what I have to say, even though I never would have said what I have to say there without it having originally being said behind the veil of this nameless, mostly faceless, blog. I don't know how I feel about my face being posted here, even if it is on my own terms.

I'm scared.

Uneasy Relief

2007-12-28T20:37:00.000-08:00

I wrote this almost word for word in a comment return, but: I took the medicine I've been out of and curled up in a ball, under a dirty blanket next to my cat for several hours and just felt slowly flooded with relief. Anyone who does not believe pharmaceuticals are medicine for some people, has no idea. It doesn't mean that the rest isn't all in there too - the life stuff, or that that isn't what brings it on - but depression like that is paralyzing physical illness. Past tragedies and present life experiences are still here to deal with for me now. Now that I can.

The Waiting

2007-12-28T13:50:00.000-08:00

This is the worst I have been in a really long time. I did get the anti-depressants. I got out of a moving car to get them, I couldn't deal with the way my cat-sitter was talking to me. But I walked the rest of the way. A man said, "Baby you look cold," and I got them. And got home. And took them. I want to take sleeping pills to sleep through till this kicks in enough. This feels unbearable.

Attempt

2007-12-27T22:28:00.000-08:00

Now I should be taking sleeping pills, but I'm up from the pharmacy trek. I thought about taking my camera, because I think I want to have it with me all the time. I prefer not having cameras on trips (although I cherish other's photos later) - so I'm not missing things by seeing through those eyes - but now, my life, my routines, that I'm so used to I don't see anymore, it's informative to see the pieces.

I decided not to take the camera tonight, because I was afraid I wasn't going to make it to the pharmacy on time (which closes at 5 or 5:30 because it's the Tenderloin and safer for everyone to close early), and I didn't want to be distracted although I knew I might want it on the way back. (I did.)

I got disoriented and went too far and had to work my way back. There are people you don't know if are high or sleeping or dead. I was thinking about how this summer when I house-sat for the little New Orleans Uptown bungalow house and cats, my cousin warned me that if I wanted to go to the French Quarter, I'd have to drive (which I'm not used to) because the St.Charles streetcar is still not operating, and taking city buses isn't safe.

I'm not street-smart, but I'm very good at being invisible. In Chinatown, in the financial district (with a little effort), Nob Hill, Union Square, the Castro, the Tenderloin....

The pharmacy lights were on but its screens drawn down. I wasn't frustrated, I just passed through the people hanging out in front of it since I was coming back from having gone too far and headed toward Market to go home that way.

On Market two cops (with uniform stealth, not urgency, exactly) ran toward and passed me with guns drawn straight down at their sides. I wasn't alarmed. They left no wake of adrenaline. But I did turn around after they passed me turning onto the corner of the street I had just come from. I was just curious about the protocol of running with guns. That's when I wished I had my camera, because there was time. They were running slow and steady like they knew exactly what they were doing and that whoever they were about to come upon didn't know it yet. There were no sirens, or police vehicles around that I saw. I hope that everyone is OK. I'm sad that it's business as usual. I've seen a cop put a hand on his gun, but I don't think I've ever seen them running with them.

I went to Starbucks and bought an eggnog latte, which I never do , but I wanted one yesterday for Christmas - well Christmas two days ago when everything was closed, screened down. I bought a piece of gingerbread and then gave all my money to a man sitting outside wanting some. I don't know how much it was.

There's more to this way home, but I took two Valium when I got back (which I'm not supposed to do - if I take more than one I'm supposed to space them by an hour) and I think I might be able to sleep which would be a good idea. Tomorrow is my day of the week I'm supposed to work for my cat-sitter's editor. We'll see. I'll be able to get there, but I don't know how prepared I can be.

There's so much more. I feel sedated. I do not feel soothed.

Missing

2007-12-27T16:55:00.000-08:00

I had an appointment with my therapist at 3:00 that I wanted and needed to go to. and couldn't, so I am trying now to get dressed and go to the pharmacy to get my anti-depressants. I can't explain this at all what this feels like. If I breathe I'll cry. My hands are shaking so much I can't write this. And I'm afraid they are closing soon. The pharmacy. My therapist I talked to on the phone, after I missed the appointment, made me promise to go to the pharmacy, and would call in the morning.

I just wanted to thank you that there were comments here, "The Day After Christmas". I think if there weren't, I would just take sleeping pills. Not to die or anything, just not to feel like this. The pharmacy delivers, on Wednesdays, if you get it set up to. I will write when I get back. Why is this thing, this blog so magic? Why does it help when emails and phone calls don't feel safe instead of the other way around?

The Day After Christmas

2007-12-26T20:56:00.000-08:00

When I started this blog, I was intent on maintaining an ordered, cohesive collection of independent little units. I wanted each post to offer something in its own right. It would be alright to express negativity, as long as something good was offered in the way it would be expressed. I did want to share my story, but I did not want it to become a journal that required following.

I think my blog has become more of a diary, than I had intended. I try to make past references clear by linking them to their original posts. I'm not sure what this is becoming.

Today this post is like part of a diary I don't like. I don't know that it has anything of worth to offer, other than this picture of my old cat, who is the only thing, it has felt, the day has offered me. I am very depressed. Too depressed to get out of bed. Too depressed to have gone to the pharmacy to get my antidepressants, which I also missed yesterday. Too depressed to put on clothes and go to the little store two blocks away to get something to eat that I would want to eat. (I always keep emergency food in the apartment, that I don't like, but what I like I never store here so that I have to make myself take the two block walk every day. It's like having a dog. It makes me get out.)

On good days, I walk a lot. Almost everything and appointment is within walking range for a San Francisco hill walker. But I'm not that today.

I miss my family. I miss the little town in Tennessee where they are. I want to be there today. But I also know that, this time, it was the right decision not to go.

I wasn't up to seeing my newly pregnant cousin. It was too much. But I did talk to her on the phone yesterday, and we talked about her possibly coming out to visit, which would be good.

And my "friend" in Antwerp who I can come up with no pseudonym or category for, called ("phoned") twice - there was a bad connection, to wish me Merry Christmas, which was sweet. We acted like nothing was wrong - between us. It seems we are easily open about anything else. So maybe that is the way it will continue. We've discussed differences extensively, but never discussed difficulties between us before. But as far as I know there have never been any other than my sometimes worrying that there is when there isn't, which he has easily solaced.

But some things have changed. He has changed some things, and I don't understand why. And freedom I'm not sure I have, to write about what has changed and what I don't understand, would help me.

Christmas

2007-12-25T23:15:00.000-08:00

It doesn't matter if it's today, or how long after Christmas it may be, please, read this: My Christmas Story, by Merelyme posted December 23. That is all I have to say today.

Christmas Eve Day

2007-12-25T04:41:00.000-08:00

Following the theme of my mossicle wreath, this is a wreath at the ceiling of Grace Cathedral. The ceiling of the cathedral is skeletal (which I like the feel of) because, although the arches themselves are stable, it was never finished for fear of stones falling on the congregants during an earthquake. Grace Cathedral is the third largest Cathedral in the United States, the National Cathedral in DC being the first, Saint John the Divine in New York being second.

This is the wreath at the Interfaith AIDS Memorial Chapel at Grace Cathedral - You can take a virtual tour of the chapel at this link. I'm about to, but these are my pictures Christmas Eve yesterday, anyway. While I was taking pictures during the chaos of a postlude to a Christmas pageant of hundreds of children, a little girl removing her wings asked her mother what the Quilt was for. Her mother said, "Well when there was an AIDS crisis...."

There is always one panel of the Quilt displayed in this chapel. One I wrote about in my post "World AIDS Day(s) Memorial: The Quilt Over Time", was still there, maybe because of the Christmas trees in it. The white smearing "snow" at the top reads

THROUGH THE YEARS

WE ALL

WILL BE TOGETHER

The red ribbon is upside down in the snow if you didn't notice. His name Is Christopher Essex.

Turning under the wreath...

This is the Keith Haring Altar Piece. Keith Haring died of AIDS in 1990, the year before my boyfriend died. I was told a long time ago that this was Kieth Herring's last piece, but I don't know if that's true or not.

The triptych is entitled the Life of Christ, the radiating baby held in the many arms of the creature with the radiating heart (top center of center panel) is supposed to be Jesus raining drops of hope down onto the crowd of people.

But this is what it means to me;

On the center panel there are many arms of love (the heart), Two arms are cradling innocence (the baby). One of the ones, of Love's right arms is holding a circle( for union). The drops and line (energy, spirit), raining down onto the tangled crowd of people are ofall the fluids of life: cum, blood, tears. This is an AIDS memorial.

You'll have to click on the picture for close-up detail for the rest of this (I'm working on getting a more illustrative shot, without breaking it up): On the left panel (left to to us facing it), adult innocence (the angel) is kicked down out of Heaven (happiness) and the people are trying in confusion (squigly lines) to catch him. I don't know why he's "fallen" - but he was kicked.

On the right panel, the energy and spirit (the lines) of the all people's effort together is raising the adult innocence (angel) back up to happiness (Heaven) which is reaching down for him (redemption). I don't know why. He's a "him" to me (the angel), (and multi-armed Love), (and the baby), to me. I don't know why.

Below the wreath:

To Everyone for Christmas Eve (except for Sophia)

2007-12-24T18:05:00.000-08:00

(Sophia likes Poinsettia more than catnip.)

Full Moon Alone

2007-12-24T07:00:00.000-08:00

It is 7Am Christmas Eve. The moon is no longer up, but I still am. I didn't take a third sleeping pill this time, advised. I knew that I wasn't up to going to the little town in Tennessee where my maternal family is congregating. It will be very difficult coming up with pseudonym for the town. I'll ask my uncle who is an historian, and playful, to help with that. Some trip when I go there I'll take pictures of the grave sites and porches and gardens and sandstone archways and streams, huge icicles and caves, and little reading cafes, and beyond those things what I could mention would be identifying I suppose. I suppose it doesn't matter at all as long as I am not keyword search-able. They call it a "mountain," this town. It is a 2000 feet plateau above the valley floor. It is seat of an Episcopal Seminary and "University" and debate about whether it should more appropriately be named a "college" since it offers no upper graduate degrees. Traditional Liberal Arts. It is famous for its literary review. Most writers and all Episcopal priests anywhere) know its name. The only way in which my writing here is fitting with my post photograph is in contrast. Here I am. There they will be. I thought I would be alright. Christmas, nicely has not been about gift-giving for a long time for us, so without that stress, it has been easy to really cherish it for all its other silly glittery things. I don't receive many gifts, two this year because I'm so uncomfortable with the imbalance of not being able to afford more. But I have no excuse for not sending cards or something. I certainly couldn't send out one of those letters updating the family on family yearly milestones. This year I may have come close to stopping breathing, but I managed to stay out of the hospital. I shot a lot of photography for my cat-sitters's book and blog, and helped edit a second of his books to submission, and I started working downtown (I live downtown, so downer-town, taller buildings, the ones I look out to through these windows - there's the relevance to the photo - working with his publisher to refile everything to his system, and learn how to do it myself. I go once a week on Fridays. It's near a Peet's Coffee and Tea, there's a doorman, and a receptionist and big wood desks. I sold an article from this blog to a magazine that comes out in March with a full page photo not yet selected from a photo-shoot the "Exposure" post was referring to fear of. School is postponed again but not forgotten. I worked hard gutting and building houses in New Orleans in July and August, which I would say was the happiest I've been, except for the Southwest trip with my "friend" and that first sleepy-for-him night, all night, sleeping that way, and in the morning, was the happiest I may ever have been. I don't know that he has any understanding of that happiness. It was like holy. I'm not going to avoid that word. It was whole, and sacred to be. We were careless later, temporarily - but I know that first morning wasn't wrong. Something happened that affected me forever now. Nothing could live up to being accepted like that - without speaking about it, to not be something contaminated to be protected from. To be together after some amount of time, awake and conscious and knowing and unhesitating. I have never felt so "good." This is my place to say these things which have passed and gone away. And will probably never happen again.

Reflections

2007-12-23T20:00:00.000-08:00

The five lights "around" the full moon are actually reflections on my window pane from the colored bulbs on the mossicle wreath on my ceiling lamp. So this is my blessing wreath now, from New Orleans, to the city of San Francisco.

The floating Christmas tree shaped thing with the star at the top left in the above photo, and in the lower right one is the lit tip of the Transamerica Pyramid.

Sophia and the Full Moon

2007-12-23T19:53:00.000-08:00

Circuity, the Solstice

2007-12-22T20:07:00.000-08:00

There is so much I want to say today, but the things I need most to express are the things I feel most conflicted about expressing here. But this blog for some magical-feeling reason is the only place that expression of this kind of anguish feels truly relieving.

There is no way I can write about my life without writing about my relationships (namelessly of course).

I do not have freedom to live the way I want. I want - need - the option of speaking freely, in detail, instead.

Is that my right? If what I need to write about is about a human being who has more choices of life-expression than I do? This is mine. This blog. This is the one - and it can - with readership and/or comments, provide a kind of warmth - that stays with me.

The person I need to write about promised not to read here though. He has been a few times. I am easing into more exposure anyway, so I say it is OK that he did what he said he wouldn't. I tell myself OK, because he has been so good to me. But I said that it is not too. I am glad for his interest. But I don't want him to know this much about me. He says, "But it is circuitous, isn't it. You are writing about me. To the world. And I am not supposed to see it?"

But no. This is my world. My side of the relationship. I do not identify him (by name), and there is little enough crossover in my life, that hardly anyone in my life knows of him except in the vaguest terms. KD is the only one who's met him. People do not know us together except for his friends who do not know I write.

He asked if I had come up with a pseudonym for him, yet. I haven't. I can't. The relationship is so unique unto itself, there isn't a word for him or it. I need what is so real about it. I guess I'm left with calling him my friend. He reads this. He will have to come up with a descriptor for himself.

Isn't that OK to express what I don't want someone to know elsewhere - if anonymously? Isn't that what a lot of 'fiction" or literature is, through pseudonym? That I would want privacy from him that I would share with others, does that make my time with him, the best that I have, any less real?

But he reminded me of the imperfections he has already seen - of the difficulties of the second trip, soon after I was released from hospital (which I told him about along the way gradually). I was not up to that trip and ashamed, and wished it hadn't happened, although we saw beautiful things.

I was more than grateful for this last trip [see post " Return From the Desert"] beyond description, minus the one nightmare of my infection, it was more like the first which was perfection, the honeymoon everyone aims for and misses by some degree.

So he has seen my problems before. He has seen me before. And again. He has come back anyway. He checks my site. He calls. I don't want him to disappear.

Is it health to our relationship that he would see what I would express/hide from him here - my fears, and regrets, and shames, and envy?

- That he says he already knows.

We are forgiving. My word. He says, and has said several times that we save the best of ourselves for each other. We don't have the problems of a relationship, because we don't have a traditional one. We just periodically, sporadically,drive thousands of miles together spending every hour of ten days in a row with each other.

His description, his word, is that we are "generous" with each other. He has said that many times.

There are many things that could mean. One I know is that I don't demand anything. He has said that I don't ask for anything "to a fault." But I asked him not to look up my site.

I don't mind him reading this excerpt,(except for his lack of understanding for my need to write it.) But there are other things I would say if the Belgian flag icon didn't appear - just a couple times - on my pseudo-secret statmeter. Once after the phone call at 7AM this morning (in my pre-medicated, memory-losing, athsmatic state) this morning that inspired this...this what? What do you call this? I know there is a perfect word for it.

I have no reciprocal vehicle to know his shadows of us - and wouldn't want one. I am interested, but I do not need to hear about everything. - It is true, though, that I would be curious, and tempted, if he were writing about our experiences in some venue. (I am not "writing to the world" when only a few people from all over the world stay long enough to read a whole page. I am writing thoroughly to a few people I don't know).

I am so stupid for letting him see the address in my zeal to show him that I had created something. Accomplished something on my own. A site. No help. Mine. My hubris.

I can't live my life the way that I want. That is a fact. Can I write, please, freely about the parts that I do cherish?

The groggy phone conversation (which there is much more to) resulted in his saying I should be able to write if it helps me somehow, but he will check in from time to time. That I shouldn't have to change my address because of that. Or change the way I write. But no. You go get to have your other lives without me. This is mine, even if it includes the traces left by you.

Rodin sculptures taken by "him" at The Legion of Honor, at the last day of the second trip, posted without his permission.

Mossicles

2007-12-21T15:29:00.000-08:00

This is the ceiling lamp of my studio room. The Spanish moss wreath in in honor of New Orleans. And in memory of my disaster response work trips there in July and August. On a time-off day, I had pulled down this moss from a tree at the sculpture garden at the New Orleans Museum of Art (which I still think of as "the Delgado" which it was called when I was little.) My cousin advised against the transport of the moss. She said there would be bugs in it. I didn't care. There weren't.

And now, this December, since I've spent many Christmas's here, and I've never had my own tree, and I do love Christmas because mine are simple and remind me of my grandparents - this is my new Spanish moss Christmas wreath "tree":

Like the man in line with me at MOM's pharmacy on Wednesday who said, "Hey Baby, it's your life." This is my life. This is my little antique, imported, eccentric, lonely Christmas. And it's OK.

The Alley

2007-12-20T19:47:00.000-08:00

other pictures of Sophia:
Thank You
So
Sophia and the Full Moon

Bullet-Proof Glass Medicine For Christmas

2007-12-19T11:03:00.000-08:00

Explanation of photo in response to Whimsy's comment below this text about the original photo I had posted here:

The pharmacy I go to is an all HIV - which means HIV, mental health, and often substance abuse issues - pharmacy, which exists in the neighborhood in San Francisco which needs the most medical outreach, which is also the neighborhood with the most shootings.

I wish I could have taken pictures of the clients ("consumers") there today [now yesterday], on my side of the bullet-proof glass, who are the most eclectic, truly-diverse group of people I have ever seen in one room together anywhere I have been in the world. One man asked me if I was in line to pick up while I was taking these pictures. (Other "consumers" have often been unsure whether I was a client, or worked there, or what.) I responded that yes I was in line, and not to worry - that I wasn't violating confidentiality by taking pictures of any clients - that the Christmas ornaments just interested me. He said, "Hey Baby," shrugged his shoulders and said, "It's your life."

The pharmacists, and staff (on the other side of the very thick glass and locked - just like jail - delivery box (bottom left corner), as far as I have seen, are consistently wonderfully respectful dealing with constantly difficult-to-impossible desperate circumstances and people.

My medications are very complicated to manage, and I live in the relative subsidized comfort of a usually quiet building in a comparably very safe neighborhood. If I were living on the street or in revolving residential hotel situations, or any number of other complicated - maybe abusive - circumstances, or uncontrolled psychotic states or didn't have the support and love of my cat and her sitter and KD and my family - although distant; or wasn't able to coordinate my life together enough to make doctor and therapy appointments, there is no, no, no, way I could deal with keeping up with the HIV meds that have kept me alive for this long. And those people at that pharmacy ("MOM's"+Pharmacy treat every single person they deal with like he or she deserves to be alive, and they try to make what is needed as available as simply as possible.

My pills do not come to me in a million little bottles of medicines with three different brand names that I can't remember even when prescriptions aren't constantly changing from side-effect and viral-resistance problems. My medicines come to me in week-size mediset trays, all sorted for me, for four times a day Sunday through Saturday, with their name charts typed on the back, if I care anymore. And they're delivered to me from the pharmacy upon request for whatever reason no questions asked. And one single pharmacy staff person, Kara, is assigned to handle my particular mediset and knows my specific problems (to the confidentiality extents necessary to keep up) and is in frequent communication with both me and my doctor, and has never expressed impatience with me when I've, more than once come undone her direction.

So yes, I could veer around the Tenderloin district from where I live (without ever having to see its constant, variable, life-threatening problems) to the cheerful, colorful HIV med-savy Castro - gay section to those less SF familiar - Walgreens, but I would not feel as cared about as I do from the other side of this bullet-proof glass window.

So Good Christmas to the front-lines. Both sides. - And whatever kind of Christmas Whimsy would like, and/or would enjoy not liking.

TenderloinHealth - good info and history

Frustration Mixed and Fed a Little

2007-12-18T23:04:00.000-08:00

I like the reciprocity of these doves on my empty, English (and family) Blue Willow china patern plate:

My father (in Huntsville, Alabama) who is being especially attentive this Christmastime called this evening at eight, right as my medicine beeper was going off. I told him I was kind of weak because I hadn't really been eating for a week, (truly minimally), [I didn't say what triggered that - which I also haven't written about yet here, although it's been referred to in comments sections].

My father, not usually so rational for a research scientist, advised food first. So I walked relunctancty to the cheerful little clay-tiled Market past the dazzling Christmas tree above the portico of the Ritz Carlton, in slightly drizzling, chilling rain to buy a macaroni and cheese lean cuisine, diet cokes, nonfat milk, and some baked pita chips (which I'm still working on, incrementally). Just the pita chips and the diet cokes, though.

But I made it back to my much more ordered, and empty-feeling apartment than usual - in time to take my bedtime meds exactly one hour late, at nine, which means I should have fallen asleep at ten. This is pissing me off because although there were/are extenuating circumstances at the moment (I'll give myself a week), I am trying really hard to do everything right. I already took a Valium (optional), and now I'm going to take another Ambien (allowed if necessary). We (all who know me) agree I have to sleep regularly, or it all goes to Hell, but this is exactly the pattern that led to my (unintentional) OD on the Geodon.

I see my psychiatrist, thankfully, at noon tomorrow (maybe I'll even get a December transit stamp on the way, although it seems a little late for the month, again). When this unmentioned "event" is overwith (a big hurdle today), maybe it'll be easy - the eating and sleeping, but the challenges that undermine my health are challenges no more stressful than most people deal with every single day of their work lives, and then often have family stresses as well. It's hard not to get mad when I'm doing well - and I did for the most part handle today very well - not exactly as I would have liked, if I would have prepared a little better, but I did a good job. And it was a real job, for real money, although we both forgot the release form. So he emailed it to me to print, sign, and mail - as if I have a functional printer, so I'll take my laptop via the transit booth, and psychiatrist (without telling him about any of this), to Kinkos, and hopefully there will not be a single glitch in printing out the attachment, or the original contract sent to me a week ago that I swept off into a corner of my head. And then I can work on the actual editing additions - but that may not even be stressful if it's like writing here. The pressure is in condensing what's most important to me - that's acceptable to them, in as concise a little business-as-usual-for-them opportunity as possible. But maybe I will enjoy that part. Like this. But it is 11:49. I'm taking another Ambien (not allowed thrice).

At least, thanks to my father's call, I will have milk for coffee in the morning. Because I WILL get up at 8 like normal people who do things besides go to doctors' and vet appointments.

Exposure

2007-12-18T07:19:00.000-08:00

I am not ready for this gray day. Someone is coming over who is not listed in the cast of characters in the sidebar. At 10AM. (Not part of a crisis team). Nothing has to be perfect, but my psyche will be clearer if it is. (Or it seems so.) I am lyimg back down for twenty minutes till my antidepressant kicks in - which is not meant to be a stimulant - but is. I am more vain about how my apartment will look, than about how I will - which I don't even want to think about, but should. - No, I want to do this well. My way as much as will be up to me.

Past Bed Time

2007-12-17T23:26:00.001-08:00

I took this photo from my window Christmastime last year. The top of the TransAmerica pyramid tower is lit green again, but I don't know what the moon is up to now. The red brick church in the lower right is Old Saint Mary's - the only building in the picture to have survived the 1906 earthquake. It helps me keep track of time to hear its chimes - when I notice hearing them in the daytime hidden in the cocophany of bus-spouting, cab horns, hollow hotel whistles for them, cablecar polished-brass-bell-clanging, and China-town kids' sidewalk crackers. All noises I like if my alternative were someone's TV too loud - which I somehow never hear packed in so tigtly to so many other people.I took my one Truvada, my one Norvir, my two Reyataz, my two Gabapentin,and my one Ambien. And I am wide awake, and not in a functional way. There are things I need to do. I have to do something tomorrow I want to do but am afraid of, and I want to be ready. So I want to sleep, so that I can get up early functional. I just took a Valium (optional). I was supposed to take everything (every nighttime thing) at 8PM, and be asleep by 9. My phone is set to beep at me different unobtrusive ways to tell me exactly when to take what. It really matters. My overdose was from not being organized about when I was taking what - not alcohol with it all. The only way the wine contributed would have been in the disorganization and mistiming, and forgetting what I'd already taken and retaking it. It's just that drinking complicated what was already too complicated. I haven't been around people drinking yet, but so far I have had no feeling of missing it. That feeling of being conscious during that degree of almost speechless sedation was unspeakably terrifying. I was scared to take the Geodon ever again, but taking it right, at "bed time" - so far - has been OK. A little scary if I wake up in the night while it's peaking. And it does help. I'd rather it not need to, but it does.

My psychiatrist was really relieved about the not drinking - to a degree that surprised me. He had expressed concern, because alcohol affects immune function detrimentally more than any street drug - or prescription drug that I'm taking. The Valium is new, and affects the same brain receptor alcohol does, without the damage. I don't take as much as I'm allowed.

It will be interesting to see what my immune counts have become. The last ones were in June (see sidebar), and I didn't start drinking regularly (this time around) till the first New Orleans trip in July. So we'll see what's happened since then January 7 when I finally see my doctor.

Sleep. Sleep. Please. I want tomorrow to be a good and worthwhile and easy smooth day.

Thank You

2007-12-16T21:39:00.001-08:00

Thank you to my repeat readers, and especially to those who've recently begun to comment. I am serious in the sidebar that anonymous comments or questions are welcome, too.

I hope that this new template is appealing. I liked the green vitality of the other, but I am chilled all the time these days, not cold - just chilled all the time, and I decided to save that template for summertime. Seasons matter to me, as marks of survival.

And I finally spent the money to repair my camera today, and this template seemed more conducive to photos I would take. This one is of Sophia playing gargoyle.

My "cat-sitter" - It's the best description of him, although it sounds diminutive - besides helping me take care of Sophia, takes me on errands difficult without a car (like buying her heavy cat litter, and taking us to the vet for her check-ups, which he did yesterday) in exchange for my work for him. He lives in Santa Rosa, but works in town Fridays and some weekends.

There are several little markets nearby, and the cat clinic isn't far, but I live on the steepest of San Francisco hills, and most walking anywhere is an effort if I'm not feeling well. (And although - thankfully - mostly stable now with my medications, I often feel sedated into lethargy recently.) I live right in the cable car lines, but they are five dollars without even a transfer (for tourists, locals have fast passes, and it would be free for me if I would just be together and humble enough to get my disability pass stamped once a month at the transit booth I walk by every time I go to AIDS Health Project (psychiatrist and therapist). I couldn't take Sophia on it anyway. My Cat-sitter's car is traumatizing enough.

[For more on how big a problem not getting your disability pass stamped see "Wanted in San Francisco." I absolutely have to remember my court date January 4 at 3:00. I will not be able to talk myself out of the $300 additional assessment fine twice for failing to comply with my "Recognizance Agreement to Appear in Lieu of Posting Bail." ? or my drivers license (I don't drive) will be suspended (for a non-traffic violation - public transportation passenger violation),"or this court may issue a warrant for my arrest." The, unpredictedly kind woman who let me off the first time told me to take it seriously. KD, my almost daily phone support is the one in my life who keeps track of these things, and he is gone fout of reach for three months in India. SO I HAVE TO SOMEHOW REMEMBER TO GO TO COURT JANUARY 4, with my disability pass. So if anyone out there feels like reminding me... just writing it down isn't enough for this brain. Sticking my ticket on the door I'll just get used to, and stop seeing. I need KD.]

Sophia's doctor called and said that her kidney values were looking good (for her), one even a little higher than last time, but that she was concerned about her recent weight loss, and to try tempting her with wet food (which she prefers, but almost always vomits) and that if she was vomiting to bring her in again for some other tests. Otherwise continue the infusions the same way and bring her back in in a month if it doesn't look like she's gained weight. It's hard because the small part of her kidney's that is functional can't process protein, and protein-free food is apparently not appealing. When they thought she was not going to make it (two whole years ago!), I had to syringe feed her Gerber baby food, protein or not. Calories take precedence when you weigh four pounds. She's six something now I can't remember.

So anyway, thank you Polar Bear. Thank you Merelyme. Thank you to my cat-sitter (whose blog I'll link once I'm happy enough with my portion of the work on it). Thank you my cat doctor at Nob Hill Cat Clinic, and thank you to Sophia for not throwing up yet today.

Not In a Million Years, continued

2007-12-14T10:06:00.000-08:00

continued from Wednesday, December 12

"Elisabeth" had not yet told her recently-ex, sort-of fiancee yet. The "good news" entitled November 5 email (addressed to her mother, father, two brothers, and to me) reads:

Well family, it seems that the less-than-0.8% chance of me getting pregnant...got pregnant. I just got the news today from the doctor, who says my numbers look really strong, and he's going to do an ultrasound this Friday. I'm only one month along, and of course there is a high risk for miscarriage and birth defects, so I will stay guardedly optimistic for another 2-3 months until I've passed those milestones. And don't worry about me. If the pregnancy fails, I'll be fine, I really will. It's the last thing I expected to happed, so I'll take whatever is thrown my way..... he doctor is shocked.

Love,
"Elizabeth"

She/they ( - the embryo/baby) have now passed 2 1/2 months of the three months milestones. I don't know at what point amniocentesis is required.

I love her. I love my mother and stepfather and brother, my uncles, and aunt, and the little town in Tennessee [I will have to come up with a pseudonym for that as well] where they will be meeting for Christmas, but I can't go. Maybe her doctor was right that "we" "silly girls couldn't grasp the complex psychological complex scars" of sharing the experience of a baby for her.

Not In a Million Years

2007-12-12T10:10:00.000-08:00

My mother, stepfather, and brother, were going to arrange among themselves how to get me to the small town in Tennessee where my mother and stepfather live to join them, and others, for Christmas. There is no place I would rather be for that. (I'm one of the few people who really does love Christmas - and especially family gatherings, being out here all alone.) Two of my uncles live in that little town, who I adore. It would be good for me to be there now. It would be stronger medicine than this strict mediset.

But one of my cousins [I will call her Elisabeth] who I adore beyond description (and who I would love to be) will be there, very newly pregnant. And I just can't do it. I am truly thrilled for her, but this will have been the first time she's seen family since she found out last month - and I'm just not strong enough to be around it all. All the joy. If there is anyone in the world I would want to see a child come from, though, it would be she.

She is 41 also, and has been through infertility hell. Continually-postponing husband first of all, then postponing post-divorce fiancee, low FSH levels, then fibroid surgery, and then no apparent follicles anyway. Less than .08 chance of conceiving.

She and I have a very close bond, although we go through long periods without communication. Early in my diagnosis, somewhere in the 90's before mother-to-child HIV transmission ("vertical transmission") prevention was possible she had even told me that if I were to somehow get to live a life including some kind of husband or home and self-sufficiency, that she would have a baby for me, because she knew that that then-impossibility is the loss that hit me first, before all else, when I got my kind of test result, so long ago.

This year, even before I knew my romantic friend from Antwerp [I have to come up with some kind of pseudonym for him] was coming, I had emailed her that I would have a baby for her. - That my FSH levels are still normal (I had them tested ostensibly for other menstrual problems), and that my T-cells were high (for me), my viral load undetectable, and that I would be OK for nine months without my HIV meds. She knows I have some emotional problems, but she doesn't know about all the psych meds that I would have to quit, (that I know of - I can't know how out my immediate family is about that) - but I don't care how depressed I would get. That nine months would be worth living for. And as far as mania, delusions, paranoia, and psychosis go, they could lock me up.

She didn't respond to my email for a long time. Then on November 1, when my romantic friend had just left, and my period hadn't started, and I was floating on that totally irrational muffled euphoria of pregnancy possibility, she sent me an email beginning thus:

I loved your email, please don't think that just because I don't respond, I'm not completely touched and thinking about you. I respond telepathically!

I would never ask you in a million years to interrupt your protocol for 9 months, but that is the sweetest thing anyone has ever offered me. I would do the same for you. Actually, I mentioned your offer to my doctor (either you carrying a baby for me, or me using your donor egg and carrying it myself), and he laughed at me, strictly on the basis of "You silly girls you couldn't possibly grasp the complex psychological lifelong scars of such a decision!" Geez. He just doesn't know us. No one understands us. I mentioned it to Dad, too, and his befuddled silence let me know how little he thinks of me sometimes. Our poor parents .... so confused by truly creative ways of thinking.

The next time I checked my email, in my inbox November 5 (just four days later) there was listed an email from her entitled "good news," and I knew.

continued Friday, December 14

The Mix

2007-12-07T23:15:00.000-08:00

The significance of the following conversation requires critical explanation I didn't feel ready to write about up to now. The gist of it is that, in panic, I told both my psychiatrist and therapist at AIDS Health Project that when my romantic friend from Antwerp was visiting, we had unprotected sex for the first time for us, and the first time for me (except for once with a fiance) in 21 years. I don't know how I expected them to respond, all my legitimate working life being about AIDS awareness and prevention. Once it was verified, which they already knew, that he, my friend, already knew I was HIV+, and that he was risk-literate, my therapist focused, completely to my surprise, on the fact that he, my friend, was an adult and aware and making an informed risk - that the responsibility was not all mine. I didn't know how to process that; it was so counter to everything significant to my adult life. There was a tipping of scales I can't describe, both by the act(s) discussed, and by these two professionals' responses. That they were both more concerned with pregnancy risk than HIV transmission (for a number of reasons) I would never have expected. It was both vastly relieving, humanizing, feminizing, and confusing. I will write further about it here, in detail, tomorrow, when I am not so tired, and past my truly-importantly-regimented sleep schedule. These conversations with my psychiatrist and therapist happened over the last two weeks.

I saw my psychiatrist today - the first time I had seen him in person since my OD (the day my period started). Very difficult. Talking about all the contributing factors to my overdose, I mentioned that, although the overdosing was not intentional - I was just desperately trying to feel better, and not thinking clearly - that I had been depressed that my period started that day, Monday, (since he knowing my complex feelings about that, had expressed concern about pregnancy the week before); but I mentioned it in terms of hormonal influence, the wanting more medicine to relieve hormonal depression, not distress. He didn't "seem" to hear my comment and went on to other relevant questions about contributing factors. Quite a bit of time later I off-handedly mentioned it again in terms of hormones and depression.

He said, "seemingly"off-handedly, "Oh, I guess that got lost in the mix somewhere."

I said quietly, "Not to me."

He said turning away from his desk toward me, with full consciousness, "No. I don't believe that that was lost on you."

Dream Lost

2007-12-06T10:06:00.000-08:00

Every basic thing in my life is being strictly regimented, so that I can regulate habits such to preclude a repeat of my overdose Monday. The day without medications, Tuesday, was enough to remind me that I do indeed need them. The wine I do not miss mentally. The crisis intervention still feels invasive and frightening in itself. Whatever hormonal influence and irrational grief from my period starting, continues.

Last night was the first night I could sleep my prescribed hours, although not restfully:

I dreamed there was a disoriented girl in a burning building - boiling with fire - the walls the ceiling. There were very concerned people on the sidewalk watching her, but no one would go in to get her. Emergency units had not yet arrived.

Since I was the one (that I knew of) dying anyway, I decided I must be the one to go in and get her.

So I went into the main room where she was, and grabbed her little arm, but she pulled it back from me and yelled, "Don't touch me. You might have AIDS or something," and she got away, and ran further into the building down a dark, smoking hallway. I went after her, which I don't think she expected. I was mad. I grabbed her whole little body, and said, "If we have open burn wounds, then, you will be at risk." She still fought my hold, but with some yielding." I took her out of the building, across the sidewalk - I was mad at the people there watching too - to the street, and walked off.

Clinical Observation: Emergency Home Visit

2007-12-05T19:09:00.000-08:00

I overdosed on Monday. I had been drinking too much for a while. Just wine. Never seemed like very much at any one time, but just some kind of constantly. My sleep cycle had gotten more and more disorganized (always a challenge for me), so I was gradually drinking earlier in my wake cycles since they often began in late day. It certainly wouldn't have been enough to be life-threatening in itself, but I take a lot of strong medications which require strict scheduling, and I was unable to regulate them adequately. Monday I was feeling both physically bad and extremely depressed from my period starting, and I kept taking Geodon - which is a medication my psychiatrist has wanted to me to be take at higher doses than I have been willing to, so in my lack of clarity and urgency to feel better, it didn't seem wrong to keep taking more and more of it. I don't know how much I took, but it was definitely more than I ever had before, and more than my psychiatrist would have approved. I don't think I was being suicidal - I was just desperately trying to feel better.

Another part of "the mix" as my psychiatrist was later to refer to it, was that I hadn't gone to the pharmacy to pick up my weekly mediset, and had been keeping up with all of my regular medications - having extras of at home - except my antidepressant. I think I kept reaching for the Geodon (a mood stabilizer) to make up for the lack of antidepressant.

Whatever the reasons, I was barely able to call for help. My psychiatrist got two other people on the phone to help evaluate the degree of my sedation, concerned, as he said later, that I would stop breathing.

It was determined that I was in trouble, but probably not in immediate life-threatening danger, but a crisis team was sent to my apartment to evaluate my situation and level of disorganization to prevent my doing it again. Even when I am not drinking, I have cognition and memory problems. That's why I need some of my medicines. They - the crisis team wanted to see my medisets, to make sure they were correct and not within too-easy reach. They wanted to make sure I had food here, that my cat was being taken care of, and that I was not in danger of purposeful self-harm.

It was all very scary, and humiliating. I wasn't allowed to take anything temporarily, to minimize risk until the problem was evaluated, and to detox, so I was in withdrawal from everything. I was very sick and my pupils still very dilated for more than a day.

I was scared to restart my medicines since, and have stopped alcohol completely, to everyone's relief but mine. I think I was drinking a lot more than I realized, although it has been decided that it was the Geodon overdose that was the cause of danger. I have no desire to drink (out of fear and association with the after-feeling of being poisoned), but I am am going through physical withdrawal, even to the point of having "the shakes." (Seizure risk is increased with that kind of withdrawal which matters with me since I have a seizure history.)

I have to strictly regiment every little thing I do to reestablish "normal" habits - (the correctly-dosed medicine is definite relief) - and I'm am having trouble being patient with myself being so slow to accomplish simple daily things - which is exacerbated by the feeling of exposure by the crisis team investigation although I understand it and am grateful for the concern.

World AIDS Day(s) Memorial: The Quilt Over Time

2007-12-05T10:48:00.000-08:00

Today, after taking me to the cat clinic to pick up Sophia's new fluid bag and line and needles, and then taking me to Whole Foods to buy food I don't have to cook because my oven is broken, my cat-sitter took me to Grace Cathedral to see the 28 panels of The AIDS Memorial Quilt exhibited in the nave there now. The panels will be exhibited there till this coming Friday. This is the fifteenth anniversary of The Quilt.

I expected to be moved to see that many pieces together again, and to see them in such a dignified, protected feeling space. Quilt panels are on constant revolving display, but the power, to me, is in seeing the pieces - so personal - together in such numbers. The last time I saw them was the last time it, assembled as one whole, was small enough to fit on the Washington mall, in October, 1996. So I felt like I needed to go see at least these 28 at Grace before they take them down. I just felt like I needed to go. Maybe even for as an impersonal reason as to be able to say that I went to see them for this blog.... I don't know. (Writing, and writing in my head ahead of myself can sometimes move me to do things I stall on otherwise.)

So for whatever reasons I had to go, I did not expect to be socked in the heart like this time. More than any other time. It was a foggy morning so the stained glass did not light them. It was too dark up there to read some of the small and high ones. But they were together.

Arthur Ashe's was there. Some names I know I used to know, but couldn't place. There were several Episcopal priests'. Many of people who died in the 80's. Some from Texas. The one that hit me first was for a Douglas Lowell. I don't know anything about who he was. It said, "Old years pass by. Love Stays."

There was one of a dark snowy sky. You couldn't tell what were supposed to be stars or flakes of snow. It said in white paint in the sky, "Through the years, we will all be together," and the word "together" was smear-faded into the night sky. There was a red ribbon upside down on the snow on the ground. Like blood on snow.

The most moving individual quilt panel I have ever seen I saw as I was coming down an escalator in an airport in South Africa. (I don't remember if it was in Johannesburg or Durban. It was in 2000 - the year of the Durban World AIDS Conference.) I have a picture of it. When I have access to a scanner, I will upload it here:

This quilt piece was a white field, without names or dates on it. There was a black fabric silhouette of a curvy woman with her arms open. Below her and to the right at some distance there was a black fabric silhouette of a baby with its arms open. Under the baby, in red, was the word "sick." Under the mother, in red, was the word, "dead."

One Day Late

2007-12-04T05:17:00.000-08:00

Warning: My sometimes explicitly/personal material is not intended to offend, or to shock. It's just normal in sometimes abnormal circumstances. Frida Khalo painted her broken body naked. I'm not an artist but need expression, and my blood is broken. You can expect I should on occasion mention it's significance to me:

My period started one day late today - the only time in many years it might have had reason not to. I have every reason in the world to be relieved that it did, but I am not.

Some months my period is just a bodily function, an unnecessary habit of nature. Some months it's more or less of a curse, or taunting. Rarely it's a hindrance to anything.

This time it is just bleeeeeeeeeding. From every part of the rest of me, every compromised cell of the rest of me.

World AIDS Day(s) Observation: The Women's Clinic at San Francisco General Hospital, Ward 86 - Part 4

2007-12-03T19:02:00.000-08:00

....continued from "Positive Participant Observation: the Women's AIDS Ward at San Francisco General Hospital" (2004) - See Parts 1, 2, and 3, (of 4).

...Too late. I have to wait until they get back - but I am refused by a peer advocate from entering the now patient-empty waiting room, so I stand in the hall with the gathering group of men while the room is swiftly wiped down, swept and mopped, for its gender scene change. I am not allowed to help, not being a peer advocate. The chairs, previously woman-clustered, are now lined into even rows facing the counter, where magazines and pamphlets are stacked in place of platters of food. The Women's Clinic troupe smiles at me on its way out with the trash, unclaimed clothes, and coffee dispenser.

As we, the new group, file into the room, which seem smaller despite its order and slightly smaller number of occupants. I watch, and guess, with no justifiable reason what-so-ever that some of these men might be straight - which I didn't even think abut with the diverse-beyond-category group of women. That's the way it's supposed to be, with AIDS, right? Gay-and-bisexual men, and women whose-sexual-orientation-is irrelevant. [Sorry - that is the "Participant" part of "Observation" speaking.] I guess, with probably-inaccurate evidence, that there are more gay nurses on the floor than there are gay male patients in the now noticeably quiet waiting room. I do not feel any more or less out of place in here as the only woman, but I do feel more like an adult without the peer advocates. I don't have as many questions in the new rendition of the space, but it's easier in this one to examine the questions I had in the last.

Understanding that what I notice about others in my environment says things about me, I hope that, reciprocally, questions I ask about my reactions to that environment might lead to answers about others as well: The Women's Clinic was established to create a sense of community in the demographic I am supposed to feel a part of. Its mission seems, from the outside, to have succeeded. So why is it that I feel I am on the outside? Is my sense of alienation some kind of literal "homophobia" - fear of sameness, fear of seeing myself here? Is my sense of upper middle-class background inscribed so permanently in my cells that it really is part of who I am to the point that it would override the solidarity it seems would stem from our same SSI, housing challenges, and even life-threatened condition? How much of my estrangement is due to race? How much of my lack of gender-specific identification is due to my disallowing myself experiences I, on some level, equate with being a woman - experiences that I consequently envy them for? Do I identify more with the waning demographic of people whose experience of living with HIV is interminably based on what it meant to be positive before the advent of effective medications, none of whom - it seems - anymore are women? Do the other quiet women who come here think of me as part of the "them" that they don't feel a part of either? Are others being sociable to each other because they feel that is what is wanted or expected from them?

Maybe I am as included and involved in this part of my communitie(s) as anyone, just not audibly. Maybe I'm tired of trying to figure out how to answer other people's questions, and it is participation enough to sit and watch and listen and wear their clothes and love that they wear mine. ~

World AIDS Day(s) Observation: The Women's Clinic at San Francisco General Hospital, Ward 86 - Part 3

2007-12-02T17:10:00.000-08:00

...continued from "Positive Participant Observation: The Women's AIDS Clinic at San Francisco General Hospital" (2004), See Parts 1 and 2 (of 4).

A nurse calls me by me family name. I am no follow him to get my weight, blood-pressure, and temperature. I'm told I can't bring my doughnut, and am quickly brought paper plate for it, and am told that a peer advocate will watch it. At this point in the routine I am asked to rate any and all pain as one value, 1 to 10. I wonder if the others have as much trouble as I do understanding that question. I have no idea what to say, and answer randomly, like picking a card from my own self-shuffled, upside down deck. The next ten minutes are missing because I have completely distracted myself by playing with the idea of face cards as indices of pain. My nurse practitioner (we don't regularly see doctors unless we are dying and, like prenatal and pediatric care, I don't know where we go for that either) - Catherine, is running late, so to kill time I go get my TB test, even though I know I'm not coming all the way back down here to get the results checked. I can't imagine that anyone else, without an undeniable result, does either. I lie that I will come back and go, distracted, back to the waiting room smiling to myself at the idea of the queen of pain. I don't want my doughnut.

Next I am escorted to Catherine whose window is wide open this February, because the room is too small for its radiator's nonadjustable output. She takes a deep breath and leans her head back against the wall as if she could be relieved to see me. Maybe she's relieved to see each of us - that we've shown up. Maybe it's that she knows me well enough to know she doesn't need to be any particular way for me. But I think I know her well enough to think she doesn't think she needs to be any particular way for anybody. I don't know anything personal about her at all except that she has a daughter named Sophie who plays piano, although I don't remember how I know that. I don't know Catherine's age, but it seems to stay the seem the same while mine gets closer to it. For the first time it occurs to me to wonder if I might be her longest-present-continuous patient. I almost ask, and then decide against it. She asks how I am, which means, "How is school?" as much as it means anything else. She fills out my lab requisition hurriedly so I can get my blood drawn before the phlebotomists go to lunch.

continued...

World AIDS Day(s) Observation: The Women's Clinic at Ward 86, San Francisco General Hospital - Part 2

2007-12-02T01:22:00.000-08:00

...continued from "Positive Participant Observation: The Women's AIDS Clinic at San Francisco General Hospital" (2004), See Part 1, (of 4)

Looking around the room I see many familiar faces, although I, shamefully, only remember one woman's name. Most are African American; there are two white women besides me, and one Latina. Although there are sometimes Asian healthcare workers around, in writing this I realize that I don't remember ever meeting an openly HIV+ Asian woman anywhere. Most of these patients are very sociable, as designed. (The women's clinic project was established five or six years ago - I'm not good with years - to address the disproportionate level of isolation of HIV+ women from each other, and our correlated diminished care-seeking and treatment adherence.) Most of us seem to look forward to seeing each other here, and the apparent light-heartedness is not, I assume, representative of day-to-day lives. I, and a couple others, are never talkative, which seems to be allowed, and does not seem to be received as unfriendly - as, at least in my case, it is certainly not intended to be.

Although I know the mission of this project is to create and sustain a sense of community, the typical conversations make me more aware of my differences, than of our commonalities. The conversations often either concern addictions/recovery which is discussed freely and with effusive, practiced-seeming support, or, as commonly, stories of family and children (who I think are not allowed here -?). I've never actually seen anyone of us pregnant, and I wonder where we go for that. Except for references to baby-daddies references to husbands or boyfriends or partners are almost non-existent. Also maybe-surprisingly lacking are conversations about illness. Care providers are talked about casually, as though friends.

The most conspicuous (- to me) conversation of this day is between a very large, ageless-looking black woman with enormous breasts, who walks slowly with a cane in stiletto boots, and a small white woman, who might be forty but looks like a very weathered, straight-postured 12-year-old. The black woman, seated, has attracted attention from several woman, for her hair extension - a shiny, swingy-straight short blue ponytail on the very top of her head. The white woman, who shifts her weight quickly (maybe 95 pounds) from foot to foot - (she is the only underweight one in the room) - with both hands pushed deep into her ratted jeans pockets says, "That's cool. I like that. Your hair."

The black woman ignores her, both boots on the floor.

The white woman says, "It's kinda like those things, you know, those Dr. Suess things."

The black woman looks straight ahead and says nothing.

The white woman says, "You know Dr. Suess?"

The black woman raises he eyebrows, and the white woman shoves her hands harder into her pockets, saying, "That's cool, that's cool," and turns 90 degrees to look out the window. I realize, with jolt, that it had occurred to me that the blue ponytail looked a little like a whale spout.

Concerning dress: my favorite thing in this room - in this whole place, next to the cardboard Halloween bats which for years have been hanging upside down from the ceiling above the phlebotomists in the lab across the hall - is a garbage bag of clothes in the corner to my right.: a nest of clothes strewn around it. Years ago, when the women's clinic was just getting going, an unknown person left a bag of clothes for us, and I didn't know how we were supposed to feel about that - if we should feel offended. Apparently we weren't; no one else seemed to think at all about how it got there. A dressing-each-other-up happened, and every week ever since then, without plan, we have brought our own hand-me-downs for each other

continued....

World AIDS Day(s) Observation: The Women's Clinic at Ward 86, San Francisco General Hospital - Part 1

2007-12-01T20:31:00.000-08:00

This is the first year - in many ways my own reclusive fault - I have been invited to nothing, or heard of nothing, honoring World AIDS Day (other than Regan Hofmann's October blog post on POZ Blogs comparing Breast Cancer Awareness Month's pink ribbon presence with World AIDS Day's faded, - my word red ones).

So: my way of honoring World AIDS Day is to do a four day series on the Women's Clinic at SFGH's famous - see And The Band Played On again - Ward 86. This writing is taken from a "participant observation" paper I wrote for an anthropology class at City College of San Francisco in February of 2004 - The characters and place are not altered or exaggerated. I haven't seen the women I described in detail in a long time. But not a whole lot has changed at the clinic since I wrote this, that I can tell. Always new classes of meds; patients have died; patients have survived; and disappeared for their own reasons - and the bats were outlawed by the fire marshal, (you'll see, read on...):

Positive Participant Observation: The Women's AIDS Clinic at San Francisco General Hospital

Every Thusday morning between 9:30 and 11:00, in "Women's Clinic" at the AIDS/Oncology Ward at San Francisco General Hospital. I do not know if people with non-AIDS-related cancers are eger treated at "AIDS/ Oncology," or if both conditions are listed together as a confound to protect the confidentiality of HIV-status - similar to the was that the appointment reminder mailings used to say they were from a euphemistic, "Positive Health Practice," and now a generic "Community Health Network." Although I have been receiving these appointment reminders in the mail at least every other month since before there was a seperate clinic-time for women alone, I'm surprised at how many details of a place so familiar to me - like its name - I do not have real explanations for.

Ward 86, the clinic's least revealing (and most famous) title, is the sixth floor of the second (not up to seismic safety level code) brick building of the old section of San Francisco General. Old brass elevator doors, deco details, and impractical hallways are consolingly humanizing compared to the cold symmetry of the newer main buildings and emergency rooms. Except for a methadone clinic somewhere on the first, I don't know what the other floors in this building are used for , but in the elevator going up, I distract myself with wondering who is going, besides me, to mine. Most of the health-care workers don't wear scrubs, so I can't always distinguish who are patients, and who treat patients. I wonder this time if two men in the elevator could possibly wonder where I am going also, but I know better. The doors open at my/our destination facing a wide, colorful reception area, over which is a long paper banner announcing "TB Test Week" in blue tempera paint. (Annual maintenance testing and vaccinating are organized into little seasons here: TB Testing Week, STD-testing Week. hepatitis vaccine week, flu shot week...). Before checking in, patients first have to go left down the hall to a small room - which everyone seems to know to do, although I, this time, - writing in my head with fresh eyes- notice I don't see any posted instructions. There is a brief wait in line to get into the small room which contains two crowded desk cubicles facing away form each other. Every inch of the cubicle I'm called to is covered with stuff - photographs of little girls wearing pink ruffled dresses and white maryjanes, postcards from tropical-looking beaches, a cross, plastic rosary, and dried flowers; a blown up color xerox of Doctor Paul Volberding smiling shyly in a tuxedo. A large, dark-skinned woman asks (with an accent I can't identify) for my hospital number, as she has done for years. I still haven't learned it and give her my social security number instead. Every ornately-tipped finger of her typing hands is articulate by a gold ring. She verifies my address, and I go to a loud, tired-sounding machine that spits out my temporary hospital ID card, and then back to check on at the initial reception area.

Once officially here, I am directed unnecessarily to the waiting room down the hal in the opposite direction. I pass a few men sitting in uncomfortable-looking, mismatched plastic chairs in the hallway, and enter what is temporarily the snctum of my kind, bright with morning light from two large windows, which look out over small volunteer-tened gardens with benches way below, past the iron gates and Potrero. over bright houses in the Mission, to the hills just South of Castro. The same mismatched chairs don't look so uncomfortable in here. There are, I'm guessing, twelve women total at the time being, coming ang=d going as called. The number is not including the case-workers - all women, and peer advocates standing guard over the doughnuts, and at the door. (Some times new male patients, or male patients who aren't focused on what time of the day of the week it is, drift in and are abruptly barred by peer advocates from entering.) I'm asked for my birth date as if it were a special secret code.

Today there are oranges donated from somewhere along with the now-standard bagels and doughnuts. I am greeted and issued a paper plate and handed a doughnut I'm not allowed to reach for. For some reason, I am not allowed to serve myself coffee either, and am told to wait for a peer advocate to come fix it for me. I change my mind about wanting coffee and weave through what I imagine would seem from the outside to be a surprisingly cheerful din, to the back corner of the room, as usual, to watch, as usual.

The back corner is the meeting point of two wall-long bulletin boards scattered eit postings, (no glossy, smiling, pumped-up pharmaceutical ads here). One posting requests donations of unused medications for collection and distribution in Africa; most advertise opportunities for participation in clinical trials. (There was an especially memorable opportunity a few years back offering $500 for voluntary spinal taps - two per year for a certain number of years with $1000 bonus for completing the series.) A lot of us here participate in a comparatively painless study which involves fifteen minutes of answering questions about any sexual activity we have, or have not, engaged in since the last time we were here, for which we get $25. I think I am atypical in viewing my $25 dollars as participation in research. From my longitudinal eavesdropping I think it is more common to consider the $25 as $25 without having to sell or do much. The results are the same.

continued...

Thanksgivings Still

2007-11-30T01:51:00.000-08:00

Please visit Thanksgivings (Proscribed) I finally wrote tonight, as the last day of this November - the anniversary month of my psychiatric hospitalization, and release, last year.

Locked In

2007-11-28T02:12:00.000-08:00

My psychiatrist yesterday (- still today for me again - but I really tried to sleep this time. Maybe Geodon isn't the culprit)...anyway, he reminded me that I haven't seen my regular doctor (my AIDS doctor) in a long time, now. June apparently by my last bloodwork date, although I have had more bloodwork for clinical trials since then that I didn't call to get the results from.

I called to make an appointment with her today - my Ward 86 AIDS doctor (- nurse practitioner), Catherine, and the receptionist said I couldn't see her till January 7. (Catherine, works in clinics in Uganda and Senegal, which is part of why I like her as my practitioner, even though she is not very available. I've gone to her for about ten years? The receptionist said "January 7," like I would be upset about that. But I don't really care. I like talking to her, Catherine, about her work, but our doctor/patient relationship is very casual. She asks me how I am. I say fine. We do my bloodwork. (Most of the time our relationship is casual - She is the one who had me 5150-ed to the locked up emergency psychiatric unit last November. Taken over in the back of police car, after consensus and sign-off from a social worker summoned down the hall. No one to go home to take care of my sick cat, when I wasn't let out. I became so tragically destroyed about Animal Control going to get my sick cat, with the keys they had taken from me along with writing instruments and all sharp objects - that my brother was notified as an emergency contact, and he and his wife came all the way from Arlington, Texas to cat sit. And my regular Santa Rosa Cat sitter came to her vet clinic in San Francisco to get lessons on her kidney failure fluid infusions. He had been too squeamish before this - my - emergency to stick the needle in that deep. Scruff is scruff.

They all made keys for each other, for my apartment. It was at a time when I did not trust anyone in my building, or city, to have an emergency key, including the landlords, and I believed that the woman on the first flour who was eventually evicted for the terrorist death threats, had access to all my things, no matter how many times KD paid for the locks on my door to be changed to console me.

I really do now from sanity believe my neighbor woman really wasn't just studying the trash, as she's said. She really did get the spare key on the nail by the door without me noticing and made a copy, and returned the original, and had access to all my private things for a long period of time. She lived in the downstairs front apartment, the gatekeeper, and knew all the patterns of my (and all our) comings and goings - to know when she'd have free time to herself in my space during the day - just to learn every quirky trait and legality about me to hit me with later, sometimes mysteriously, coyly, with expanses of unexplained space for a paranoid imagination, and then sometimes she'd hit me inside out with gouging specifics like some terrible angel of retribution on high to purify me of every minute, gross hypocracy and failing. Every scrap.

There is no other way to explain how she could have known all she eventually knew about my whole life and history. She told me once she was being stalked, and I said ,"Why?" And she said, "I don't know." I said, "Is it because they want something form you? She said, "No." I said, "Is it because you've done some thing to them ?" She said, "Oh, no" shaking her head effusively. I said, "Is it to put you in your place?" She looked me straight on and said, "Yes."

There weren't many people in the building during the day to notice her comings and goings, and there are always the unused back stairs, if there were people.

When the landlord Mr.Quan, became scared of her too, he told me to tell her she was not to come above her first floor. She had no business above the first floor. When kind of law is that?
He thought I should tell her because i was her only friend, which I supposed he inferred from the fact that my whole existence was tuned to appeasing her because she had threatened to drop off my sick cat in Mission Dolores Park and to hope for the best that someone would find and care for her.

I was not the person to ask to tell her what to do. It was the only time in my life I know I had the capacity to kill somebody. If she was going to hurt my cat or abandon her. If I had known it was coming, I would have been capable. That doesn't mean I would have, but grace was in the doubt. I couldn't know she would hurt her or abandon her until she would have, and by then, hurting Arlene, the neighbor, the gatekeeper, would no longer be relevant at all.

This is not what I was going to write today. I was going to write that although I can't see my practitioner, Catherine till January 7, I should at least call her for a blood panel requisition so I can just go show up, whenever, drop in, to get my blood drawn to see what my T-cells and viral load are up to. (There's no stress about that. It only matters if my viral load is in the hundred thousands or something - in which case my present meds are no longer worth taking, and probably haven't been in awhile. In which case there would definitely be stress about what to do next.) Treatment options limited still, for me, taken what I've taken. My cuffs to the city and its trials.

Questionable Medicine

2007-11-27T22:50:00.000-08:00

I woke up at 3PM today, in time to make it to my psychiatry appointment at AIDS Health Project at 4 by cab, (which KD had left a little extra cash specifically for).

We all agree, everyone who has witnessed me over time, that without sleep regulation the rest of my life comes undone. Low-dose Ambien does the trick every time - except when I take higher doses of Geodon, (an antipsychotic/mood-stabalizer which can be paradoxically and unpredictably sedating and stimulating - and very helpful with overwhelmingly confused thinking.) (This kind of writing here, for whatever reasons, is also very helpful with organizing and grounding overwhelmingly confused thinking.)

I told him, my psychiatrist, that I wasn't sleeping and that I had upped the Geodon (for a number of reasons). But rather than advising me to reduce it, he advised increasing it significantly, but taking it only in the morning. Which is fine if I stay home all day.

I trust him implicitly, therapeutically, but I don't always trust him chemically.

So we'll see. Maybe I'll take it temporarily, maybe I won't. What is essential though, is that I force myself to sleep at night, and that when I wake feeling depressed in a way that feels irremediable, (which is every waking these recent days), I force myself to get up anyway, just enough to take the rest of my morning medicine. Then if I allow myself unconsciousness, I wake up clear, soon after. Not high - just not plowed under.

I told him it helped that I've found other people online who have difficulties and complications and questions about amounts of medications prescribed. And he said, "Are they my patients?"

I said, "Why? Do you prescribe more than most?" He said, "I am freer about it."

He did say, "You are smart," - which I didn't understand - "You know you tend to crumble when people leave. You need to sleep. I don't like seeing you this way. I don't think you like being this way. Please try to take care of yourself. Please don't drink. [New studies show drinking is more detrimental to immune function than psychiatric and street drugs.] Please sleep at night. "

So

2007-11-25T22:31:00.000-08:00

I don't know what to do with myself. I woke up at 6:30 PM. It was so dark I was hoping it was the middle of the night. I think things are pretty together - my apartment fairly organized, and clean. My cat and I have had our medicine, but I don't know how to decide when to give it to either of us again, when I don't know what times of day our days happen. It's very well-intentioned hit-or-miss.

Her medicine matters more than mine, my cat's. She has only 20% kidney function, and can't regulate fluid levels by drinking water and peeing. Her kind of degenerative kidney failure is I'm told always progressive, but she almost died (below four pounds), more than two years ago. I was torn apart at the completely unpredicted idea that she might die before me. I had been used to worrying about who would care for her when I was gone.

But she is doing well. (And I am doing well physically.) She looks as vitally sleek and shiny as she ever did now, and surprises her doctors every time we visit them (every two months). But her health is work, too.

I have to give her her 150 milliliters of electrolyte fluids every "day" - or whatever close to twenty-four hours we manage - through a long needle in her scruff, from an IV-looking bag hung on the finial of my grandparents Chippendale dresser. We sit on the hardwood floor and growl. (I's not actually "IV," but deep subcutaneous. She's not happy - at all - about it at the time - but forgives quickly, and seems to thrive in response.

People say they can tell you're helping them, sick animals. But I feel like it's respectful of me know that I don't know what she thinks about having a needle stuck in her neck - or what she thinks of anything else. But I do know, beyond intentions, that we are bonded as I believe I would be with any human child - which for me is saying as much as is possible to say about that.

It matters to both our health for me to be the one staying on a normal sleep cycle, but I seem to be immune to sleep medications sometimes. Now. I took extra antipsychotics today (which I am encouraged to do much, much more than I do), but I think that they override other medicines we all agree I need, too. And sleep is number one regulatory maintenance.

...I miss sleeping in the daybed in the bedroom of the apartment my friend KD was renting while he was visiting here. But Sophia (- my cat who I've already disclosed KD calls "So") is passionately happy I'm back, "sleeping" - I hope, here with her.

KD called from LA, and I thanked him for the time together and the thanksgiving dinner picnic on my hard floor he shared with me.

He had dinner with Alanis Morissett tonight. How is it that people in my life have people in their lives like that - so casually. (Maybe not so casually. He said they were checking each other out. But that it didn't work. I asked why, and he said "Ah...ah...I don't know. I'm picky." And I said that I was honored, then. (We were together five years.) He said, "You should be, " but I don't think he meant it as arrogantly as it sounded. He was attracted to my pathos. He does love me still, and I'm still sometimes pathetic, but I'm not on the sharp edge of dying anymore.

And what am I doing in their lives, too - KD and his famous people - at virtually the same time? Is it all left-over, once-removed "karma" from when my life was so charged? The fact that I was alive at all was so charged? The people I'm talking about in my life (in those circles) all met me a long time ago. I don't meet new people who know people anymore. "They're all just people, when you meet them," they say.

Yeah sort of. I remember what that was like. Maybe if I had a talent - other than survival, I would love the charges of those charged connections still. I believe if my life were constant talents would reveal themselves, attracting what I don't know.

I suppose I'm answering all my own questions. In circles. I'm not up for all that anymore.

I feel like I love Alanis Morissett, and her style feels personally familiar to me, (more than to KD - I know more about her than he does), but if KD had said, "Hey, do you want to have dinner with Alanis Morissett tonight? - which he would have done if they weren't flirting with possibilities, I don't know what all that would have made me feel.

When I was still rushing and glowing from coming back from my trip two weeks ago, and feeling well-loved, and equal to another in some terms, I probably would have said, Yeah sure, in a tentative heartbeat. But the fact of it is, I can't hold it together - me at my best, which means me at my competent - for very long periods of time at all, and I'm really not up for forcing the timing of my competence to fit beautiful opportunities anymore.

I have my KD most days on the phone, and for the slumber parties when he's here, on tour, and I have my Belgian romance - truly a thorough love of my life - (for a week every year or two, with little to no communication in between), and I have my brother and family members to feel close to without speaking all that much, - and I have "So" - my sick black cat, who couldn't be more exquisitely beautiful and tender. Sleepy as she is.

I wish this post were more coherent.

Bridge

2007-11-24T07:02:00.000-08:00

Retroscription

2007-11-24T06:58:00.000-08:00

I won't be able to write the recent posts I have written in my head, that I want very much to post, until I have slept - which I can't remember the feeling of ever wanting to do. I'm forcing myself to take at least one sleeping pill, and I'm working myself up to follow my old black cat's very softly-snoring example. - After I wake her up to give her her medicine.

Friday, yesterday for me this Sunday morning, was significant, and I hope that anyone who reads this post now will check back to that one when it soon exists. That day, Friday (the day after Thanksgiving), and the day exactly one year before it, matter to me in ways nobody knows.

Thank you. Good Morning.

Thanksgivings (Proscribed) [- witten Friday, November 30]

2007-11-23T23:30:00.000-08:00

I had two thanksgivings last year. One with a neighbor, an older (?) lonely seeming My first Thanksgiving last year happened with my neighbor across the hall, (under Everett's apartment). We, my neighbor, and I cooked together, in her kitchen, the first traditional Thanksgiving dinner I have ever helped cook. (Other than desserts, which I am very good at, but which we did not have this time, food still being quite an issue at the time.) She taught me how to make a roux (which I was ashamed of not knowing, - coming from Louisiana). She made a turkey, which I still don't know how to do, although she had me come over to witness the steps. She sugar basted and baked apples and butternut squash together with nutmeg.

I made cornbread (being a baker), and successful cornbread dressing, and enjoyed the crackling process of boiling down cranberries with cinnamon and cloves and orange zest and - yes - Splenda. And I steamed broccoli (a safe food), but with lemon olive oil. And we had wine. Mine diluted. In very pretty delicate glasses I found in a thrift shop for four dollars.

It was lovely. If the cameras were real - it should have been recorded.

The second Thanksgiving dinner was disorganized. I had exchanged phone numbers with one of my "roommates" at the hospital, a beautiful thin 40-something year old Korean woman, who'd tried to hang herself, because she couldn't handle being recorded all the time. She had cameras too - but they were real. - I went to her apartment building to find her when she couldn't find me me. She was living in a boarding house, above a porn shop, with real cameras you could see in the hallways. Security cameras.

She'd been spending her time making beaded necklesses for the pope - until she thought the attention from her would harm him. So she wanted to teach me to do what she did , so giving them to him would be OK. I know where she got the beading part from, because supervised bead-work was one of our optional activities at the hospital - like making moccasins too. She had given me one of her moccasins because she hadn't done it right and thought I could fix it. I still have it.

Anyway she had a cell phone, and we eventually found each other the day after Thanksgiving, after I'd been let into her building - where she wasn't. And she invited a man who'd also been recently released - to my apartment, for a day after Thanksgiving Thanksgiving.

I had been attracted to the man in the hospital. He had just been admitted when I was about to be released. I had only seen him in a gown, but he had an aura of intelligence about his paranoia that not everyone paranoid did. I don't remember his name. I didn't know it till the Korean woman (who'd named herself an Irish boy's name) told me.

I wasn't attracted to him at all when he came over to my apartment though. I did like him. He brought carrots in a can. (Sugared). The woman brought hummus, falafel, and couscous from a restaurant. And I had the left over turkey from my neighbor, with perfect roux gravy, and cornbread, and dressing leftovers, and new safe steamed broccoli. We ate on the floor with linen napkins for a tablecloth. I don't have a table. And we drank water.

It was the first time I had really eaten in I don't know how many months. And I was thankful. I was appreciative about my neighbor woman's Thanksgiving, but I was thankful for the happy, careful sweetness of the second one. I don't see my neighbor woman much, and I never saw the other two again, but I love all three.

Thanksgiving with KD

2007-11-22T01:31:00.000-08:00

This was KD's last night here after a two week visit, (after a two week road trip with my only romance of six years - other than on very bad mistake.)

He sat - KD, no doubt uncomfortably, (but without sign ogf complaint), on my my hardwood floor, and ate cornbread and cranberry sauce and steamed broccoli with good olive oil I'd prepared for him. He'd brought a little pumpkin pie one of his devotees brought him at his last performance. I ate all of it.

Wired

2007-11-21T19:08:00.000-08:00

I do not remember the morning. I remember that I wanted to (needed to) get online, and something was different. My friend from New York...[I'm not sure what to call him here, because he will, thankfully, keep showing up. His name is KD, but my therapist, who is usually bafflingly attentive to details, sometimes gets my New York KD's name mixed up with with my romantic Red Cross Antwerp friend's name - who I have not named here in any way. And I don't want to keep explaining that KD is an emotionally-intimate ex. I stay at the hotel rooms or apartments he rents while he stays here (for work), but I sleep in the twin or, now, day bed - or on the edge. He stays places close to my apartment, so that it is easy for me to walk home to feed my cat, and give her her medicine, and spend some time with her. He calls her, my cat, "So" - which is not her name. I will call KD, "NYKD," (like NYFD - the New York Fire Department, for something other than fire)],...my friend from New York, NYKD, had tinkered with wirelessness at my apartment yesterday, which did not work today. So nor did anything on my computer that worked before.

I don't think I was being "psychotic," but I could - beyond "normal" - not handle not being able to get to my space here, my blog, or to others' from here. I unplugged everything that looked reasonable, and tried to plug in everything in every combination to return things to the familiar. I could not fit things into things. One could fit one end, but not the other.

So I stretched out all the wires parallel in a corner, and I cleaned the rest of my apartment, and then could not think of anything else to do that I could do in a state of frustration that compacted. (Everything but the litter box, and washing my hair.) And then I put all my wires in a bag that NYKD had left here, with my computer, and I walked up the hill to the apartment where he rented for the week he's staying - because he was not answering his phone, and I was going to break something if I couldn't be moving toward fixing it. The disconnection.

He answered my soft, out-of-breath knock, slowly opening the door. He said, "We're filming," and I remembered that the reason I was at my apartment, and not here in the first place, was that he had an interview.

I said, "I forgot. I'm sorry. "

He said, "It's OK," and ,"Come in," and opened the door so that his body blocked the direction of the hallway to the white diffused-lit living room.

He gestured welcome toward the darker, tree-shuttered bedroom, (the other direction), - with no detectable annoyance what-so-ever. He said, "There's some Valium on the table between the beds."

I said, "I don't need Valium. I need a computer." He said OK like it was the same thing and brought to me - sitting in wait in the middle of his big white bed, against the Victorian-detailed headboard - his wireless-functional brand-new MacBook. No problem. And went back to filming.

He left the bedroom door open, with the confidence I'd be set, and I could hear the muffled - very male filming energy between them - the camera man, NYKD, and the interviewer. - And later, the straight, personal touches after the fact.

I was at peace here, there.

My rushed and discontinuous thoughts can get lined up here, (online), to some extent, somehow - with much more work than it might seem reading. I don't know why blogging works for me. Whether anyone might read this post or not, for better or worse, a paper journal is too lonely in the moment in times when the moment is all I can remember.

Something is Wrong With Me Today.

2007-11-20T03:30:00.000-08:00

I don't know how to describe what is wrong other than that it is ceaseless-seeming agitation. I can't stay in a room if someone's eating. I can't get away fast enough from the sound. I tried to distract myself with TV - probably shouldn't have tried the news, but I couldn't even hear the news for the irritations of the voices, so I worked all day on the last post, on my bio - which I want to finish and mail tomorrow evening in form appropriate to the person who asked for it. It doesn't have to be torture. My therapist, on the phone, asked if I thought the intense dysphoria was related to trying to sum up my HIV life for the bio, but I don't think so. This is more thorough.

I'll probably take this post down once the fog that has come upon me has gone its way, or evaporated, or retreated, or whatever it will do so that it doesn't chill me to breathe. I woke up this way. My whole body feels tightened with insignificant angers. I keep wanting to just start screaming - not yell at someone for something, just scream. Small, short, ineffectual bursts. Nothing like a good one.

I drank a couple glasses of wine three or four hours ago, which didn't do anything one way or another, and I took a Valium and an Ambien about one hour ago. I can't do this tomorrow. Tomorrow can't be like this. Even getting sleepy now there is nothing soothing about. My stomach is still knotted and my thoughts fiercely bickering. I have even less ability to try to come up with something to help. I don't want to go to sleep till I feel peace. Give up.

I was supposed to go to the pharmacy a half a week ago and have, as of tomorrow morning, run out of my reserves - the antidepressant which normally does offer relief a few minutes after taking. Maybe I can find misplaced ones. (I have plenty of extra antivirals I shouldn't have, because I should have taken them.)

I'm supposed to go to my therapist at 3:30 tomorrow. I'll go to the pharmacy then. Otherwise I...no that's not even true. I was going to say I'd want to stay in bed all day, but I kept trying to go back to it for comfort today to no avail. My cat can still pull sweet voices from my throat, though. I need to galvanize the capacity tomorrow to go to the store to buy clean litter for her, and to wash my New York visitor's clothes. And to wash my hair (which needs it) which I would do now, but the sound of drying it..., and it's too cold and it's too long, my hair, to let dry. How can normal tasks be this...this...this?

I'll probably change this post tomorrow - if I don't delete it. Or save it as draft. For what? I didn't want to use this blog this way. Negativity and venting are alright with me - if sublimated creatively or possibly helpfully. Not like this. Help, simplybeing? OK, I'm badtired. And the morning's not going to be good with the Valium tonight. Stop thinking. Just be. Bye

Lost Time: My Bio

2007-11-19T16:04:00.000-08:00

I've been asked to organize a bio of myself to submit for admission to a secret meeting on HIV/AIDS in the Spring. I've had trouble creating it for a number of reasons. One is that I lived most of my active life thinking I would not be living very long, and I didn't keep records, because I didn't think I would ever need them for anything if I had no future. I have some cohesive memories, and I have clues to where I've been, doing what when, in the artifacts scattered around my apartment, but the challenge was disturbing.

I tried starting this project (which really shouldn't have to be that big a deal) in Word, but I felt like I was writing to a wall, so, for better or worse identification-wise, I wrote it here. Blog-space feels like more space.

(I also have to write a statement of purpose for my application to a Bachelor's Degree completion program which allows me credits for past community service, and which requires a senior thesis project. I was thinking about maybe doing all that work online too, in a separate blog which this one would link to but which would not link back.)

I will be working on and adjusting this bio page for the next couple of days, and checking links for references here. I won't end up using it all for what I was asked for, but I've never written it all out, and needed to:

My Name
San Francisco

I was infected with HIV in Austin Texas in 1986 (I was 18) by a boyfriend who died from PCP from AIDS in Dallas in 1991. I was diagnosed in 1991 (with already low T-cells) a month after his death, without opportunity to ask how he thought he had contracted it. But he was much older than I was, and had been in recovery for an IV drug addiction. He had been living in Los Angeles in the late '70's and early '80's. He had also been to prison when he was younger, for dealing drugs. [All high risk factors together that I did not discuss in my HIV awareness talks to middle-schoolers.]

I came to San Francisco from Houston in 1994 for AIDS sensitivity, community (which is no longer as inclusive as it was here), services, and better medical care at SFGF Ward 86. [I knew no one on the west half of the country except one cousin who had moved temporarily to San Diego, and Ram Dass - who got me house-sitting jobs until I could find a place to live.]

I volunteered for Maitri Hospice for AIDS when it was still an old house (not up to code) in the Castro run by Phillip Whalen. I was a weekly visitor to the only woman (then) resident there, till she died of PML from AIDS several years later. She lived long enough to meet the newly-adult daughter she had given up for adoption as an infant. (Her daughter had a lot of difficulty meeting her mother, learning about her past, and losing her at the same time.)

I have participated in many clinical trials, including the first sibling lymphocyte transfer study, conducted at Saint Francis Memorial Hospital HIV Care by the National Cancer Institute. (My brother has matching HLA markers [compatible antigens]. A percentage of his T-cells were siphoned off, "leukophoresis," marked with a radioactive isotope, and infused into my bloodstream to see if they would be functional, and to see where they would go, and how long they would survive. You could see my organs on a screen in terms of his cells. They didn't last very long and ended up in my spleen.) I don't know anything about what became of the study.

I began volunteering on the California AIDS Hotline at the San Francisco AIDS Foundation, and was asked to be on the AIDS Foundation's board of directors in 1995. I served as a member of that board from January 1996 to December 2001, at a time of a lot of love, turbulence, and political infighting. I was on the board of its offspring agency HIV Prevention Project (HPP Needle Exchange) most of that time.

I was sent as a delegate to report back to the board of the AIDS Foundation from the International Conferences in Geneva in 1998 and Durban, South Africa in 2000.

Through the AIDS Foundation I did a lot of media work mostly to personalize awareness of HIV issues, and to invite support. I did interviews with public radio, local news, CBS Weekend Report, Inside Edition, and MTV. Some friends and I were the subjects of a documentary by Tokyo's TV Asahi that was the first national news coverage on AIDS in Japan. The film crew followed us around here, San Francisco, and then followed me to DC when I was there to read names the last time The Quilt was small enough to fit on the Washington mall. I was part of an irresponsible cover article in Newsweek entitled, "The End of AIDS?" Nothing I said in that interview (which did not fit the story it seemed they had pre-written) was used, but they used my photograph as the first photo of the article ,with my name and diagnosis date, even though my survival had not been due to the protease inhibitors the story highlighted. I couldn't take them. (Immune modulators, IL-2 injections, were the only thing that ever made my T-cells go up. Although easier-to-take later protease inhibitors do help, now, to keep my viral load down.)

I was on the speakers' bureaus for HIV prevention education in schools for at least seven years (till they started losing their funding, and I started getting tired of talking about my life as an 18-year-old). I was the first approved regular HIV-positive speaker in Catholic high-schools in San Francisco. I spoke at American Medical Student Associations' Annual Conventions, and for fund-raising events like AIDS Walk San Francisco and the AIDS Rides and AIDS LifeCycle. I spoke on a panel with Don Francis [of IAVI - Internternational AIDS Vaccine Initiative] [and And the Band Played On] at an event to update major donors of the AIDS Foundation. I don't know that he would remember me. My view of who I know and who knows me is distorted. (Sandra Thurman [Director of the White House AIDS Office under Clinton] would probably remember me, but not my name. Eric Goosby [former director of the Office of HIV/AIDS at the department of Health and Human Services, now CEO and chief medical officer of Pangea Glogal AIDS Foundation ] did know me over many years though, and I'm pretty sure he would vouch for me if I needed vouching for.)

I rode my bike from San Francisco to Los Angeles three times for the AIDS Rides, and once from Houston to Austin to Dallas, once from Twin Cities to Chicago, once Raleigh to DC, and once Boston to New York. I roadied on AIDS LifeCycle, and I was a member of the board of directors for a year in 1995 of Positive Pedalers a group of HIV-positive cyclists who participate in charity events as examples of positive faces of HIV. I also participated in the AIDS Marathon Training Program and ran the New Orleans AIDS Marathon in February of 1995.

I toured with a high school play put on by the New Conservatory Theatre about a girl finding out she's positive, to debrief and answer audience questions afterwards.

I had a series of vignettes about living with AIDS published by a zine published by HIFY (Health Initiatives For Youth), in The SUN Magazine, September 1997, and one by Utne Reader in February 1998, and an op-ed in the San Francisco Chronicle on reactions to protease inhibitor phenomena.

I was a member of the advisory comittee on treatment adherence for the Mayor's Summit on AIDS & HIV January 27, 1998.

I volunteered for Continuum HIV Day Services (now part of Tenderloin AIDS Resource Center) in the Tenderloin in 2006, going out to find and check on and give medical appointment reminders to people with AIDS living in residential hotels, who don't often have phones.

I worked off and on for Project Open Hand over the years, delivering meals to the homebound, manning a meal pick-up station, working food-prep in the kitchen, and serving Thanksgiving, and Christmas dinners.

I'm presently the author of two blogs: one, +Positive House, focusing creatively on HIV human needs service disparities based on gender and sexual-orientation segregation - that I seem to be the only person concerned about; and one [this one], +Conversations in Time., about my life grappling as best I can with HIV, my past, and attendant problems and hopes.

Next I want to finish at least my Bachelor's degree in anything (despite increasing concentration and memory problems), and I would like to volunteer this summer as a counselor at Camp Sunburst for kids who have or have lost HIV-positive family members, or who were themselves born HIV-positive.

राम

2007-11-18T16:20:00.000-08:00

Last night an ex-boyfriend/non-romantic-friend-beyond-category visiting from New York invited me to a dinner he was invited to by an epidemiologist and his wife. The epidemiologist invited me to a secret meeting I believe will re-inspire me to AIDS work of some kind. The meeting is to happen sometime in the spring. I'm supposed to come up with a bio to email to the host. I'm planning to assemble my history by Tuesday, giving me the weekday tomorrow to verify dates. I needed to create an explanation of myself in the form of a statement of purpose for my application to the school I am in the process of applying to anyway.

On explaining myself: I understand that psychological patterns have kinds of inertia and repetition, but that is not enough to explain why I have survived this long. I am not superstitious, or fundamentalistic. But I don't understand how my life could be as expensive as it is, why it is paid for, and why I have met (and apparently still meet) very powerfully skillful people in AIDS work, if there weren't to be some purpose to my existence besides unsought, no-longer-relevant-anyway demographic representation. (White, straight, non-non-prescription-drug-using woman.) Demographics are essential to prevention, but demographics can not cover the spectrum of living, breathing individual human bodies that HIV inhabits and takes over. I would think that is what it is that I'm here to say - except that that understanding seems to have no resonance with anybody else. So what do I do with it?

There is a new rush and urgency to my life I haven't felt in a long time. I go through long periods of giving up - years - of semi-isolation - two or three people in my life knowing what is going on with me (to the point that that is possible), only one I see regularly.

And then everything happens at once.

Wanted in San Francisco

2007-11-16T00:52:00.000-08:00

I returned home from my trip to the wilderness to a mounting legal problem I had forgotten all about:

I can barely read the carbon copy, but evidently, on 10/3/07 at 2:49 PM on a Wednesday, I, (name, address, drivers license number and class, birth date and physical description), was issued a ticket, by a police officer representing the San Francisco Municipal Transportation Agency.

I failed to appear in court to set my court date to appeal my case against the accusation that I committed the nontraffic violation of getting off a T train at the Powell Street Station without a 50-cent fare receipt. (Or $1.50, depending on whether I'm identifying as "disabled," which legally I could. And which that day I did.) I would be fined, according to the officer, a minimum of $174.00. Unless I appealed, which the officer implied was expected.

My crime (not possessing a fare receipt) was committed coming home from a support group at the Black Coalition on AIDS. I had got on the tram at 23rd Street, got on the first car, put my two quarters in the coin slot, and sat down several rows back. I saw (in silhouette through the tinted glass separating the conductor's room from the rest of the first car) that the conductor was waving his hand, and that he waved it faster when I looked up. I realized he was waving the fare receipt at issue. But I was tired, didn't want to get up and go get it. And I had shook my head and waved it off. In questionably-accurate retrospective memory, he might have even shook his head back in response.

I had enjoyed riding along the water's edge from Bayview, then watching forward through the conductor's wind shield, the dark-lit tunnel under Embarcadero. I had arrived with quieted noise at my usually-too-familiar underground stop at Powell, walked up the two flights of stairs (rather than took the escalator, disabled, tired or not) and met the police officer at the turn-style, not knowing what he was doing there but seeing there were others. It was a raid.

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At the Powell Street Station turn-style, I saw that I caught the fare-receipt monitoring officer's eye first thing. (They were not checking everyone.) And that I must be in trouble for something. I saw myself shuffling like my cat when I'm about to catch her and scoop her out of the corner I've backed her into, to give her her medicine. All dilated pupils, whiskers out, and ears flat back.

The police officer called me over, with like a come-on-over-here-I know-you-don't-have-it look. I don't know why I was presenting such guilt. I didn't even know you could get a ticket getting off a train in San Francisco. And I had in actuality paid my 50 cents.

I surrendered my disability transit card, and my drivers license upon request from my back pocket. (I usually don't carry my drivers license at all, so it was fortunate I for some reason had it with me that day, since, technically they are required together.) The police officer looked them over with serious, effective authority, and asked why my card wasn't stamped for October. (For people using public transit a lot, it is cost effective to pay a monthly eight dollar disabilty rate fee and then ride for "free," for the month.)

I could have just said, "I don't ride frequently enough. - So I pay my 50 cents, when I do." But I was feeling shame about having a disability card in the first place, thinking it was wrong to be classified as disabled if I'm capable of walking most of the places I need to go. The disability status is based on my valid income-option disabilities and disability to manage my life, based on real health problems. But that doesn't mean I can't or don't walk. Or that I don't live in a city where everything, except inclusive HIV support groups, is in walking distance from where I live.

So I said, "I dunno." Like I'm fare-skipping all the time. He wanted to know why I didn't have the September stamp either, and I said that I was out of town - which was true - I was in New Orleans. But I didn't say that because I didn't want to be exploiting New Orleans over this.

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The officer didn't tell me how much the fine would be till he finished the paperwork and explained that it was required by law to have your fare receipt with you at all times while riding, and in the stations.

I said, "OK."

He had me sign the ticket. It was then that told me that my 50-cent fare receipt--which I had for real, paid for - was going to cost me $174.00. I yelped. He was mean till then. I guess he was armed for being yelled at at this point of the process. - Not yelped at. He said, still with authority, "Go to court and have it appealed." What am I gonna say in court? He just told me it was the not having the receipt that was illegal. I didn't have it.

I took a breath. He tore off the ticket and handed it to me. I said, "Thank you," and "Sorry about that," over my shoulder as I walked free. I heard him say, "Me too, Baby," behind me.

Seriously, what would I say? I really can't afford it, but was scared of appealing because of the possibility of being asked to explain my disabilities in a courtroom. That's probably not legal. And it wouldn't be relevant, except that I would have had to say, "I paid two quarters," because I can't lie in court by saying that I paid the dollar-fifty normal person rate. Which I often do, anyway.

Last week I received an official notice from Superior Court saying that because I did not show up at 850 Bryant Street by 11/12/07, to set my court date I will be fined an additional $300.00 "assessment" fee. And that if I don't pay the $474.00 total, my driver's license - which I just recently got reauthorized for not having seizures - would be subject to re-suspension.

I don't think it's fair that there is no Traffic School option for nontraffic violations. I need a Passenger School.

To be continued, no doubt.

A Displaced Thanksgiving, Early

2007-11-10T20:44:00.000-08:00

I can say that my European friend, and the experience of traveling with him, made me appreciate the land of the country I was fortunate to be born to - and the State, National, and Navajo Park Services,...

...and I can say that loving life like I have with him makes me re-appreciate my health, and my health-care. I'm sorry about complaints (about either) that I have made on this blog. Although feeling the freedom to express those complaints here has helped relieve them somewhat.

And I can say from this trip that feeling cared about and seen by someone I like as much as I like this romantic traveler makes me yearn for private company in my life - and appreciate privacy. (He says that blogging is a "false intimacy." I think it is a different kind of intimacy, but can be very real. I hope that I have not offended anyone by being as personal as I have been on here in the past.)

And this trip has made me thankful even more for my cat and for the person who cares for her while I'm away.

Equanimity Supposed

2007-11-09T15:15:00.000-08:00

Return From the Desert

2007-11-09T13:53:00.000-08:00

My friend and I are back in the cold concrete fog of San Francisco from our made-up-as-we-went National Parks tour of the Southwest. He is out visiting people and running errands now on his last full day here before his return home to Antwerp. I am at my apartment, spending the day resting and washing our clothes, and awaiting the return of my cat from her care-giver in Santa Rosa.

Our trip was fast-paced and beautiful, romantic and challenging, and healing and redirecting. I will list the places we went--which all would be impossibly too much to describe. People who have already been to those places will know.... And I hope
people who haven't been to them will someday get to go. This trip was a highlight of my life.

We started our improvisational pilgrimage driving east from San Francisco through Yosemite National Park, via the Tioga Pass to Mono Lake where we got a small cheerful room in an inn with a cafe and pumpkin-lined front porch. (The next morning the same pumpkins lining the porch had been carved into wild happy faces by kids from a nearby school the evening before.)

We cut across and up north to the "Loneliest highway in America" and then east through the desert expanse of Nevada to Great Basin National Park, where we toured Lehman Caves. There is a stalactite in that cave--(it is actually one cave despite its name)--which meets a stalagmite by a single not-yet-calcified continuous drop of water.

We continued driving east the next day. --"We" meaning "he." (I was hoping to help out more with the driving on this trip since I can't help out more with the expenses, but he either really likes driving or doesn't trust me to since my license was reauthorized after a medical suspension for an unexplained gran mal seizure as a pedestrian on a sidewalk in Chinatown several years ago. It just seemed to me now though, that there wasn't much for me to run into on the least-traversed, biggest desert in the United States).

"We" were driven across Utah to Mohab where we spent two nights, hiking one day just north at Arches National Park to Delicate Arch (the state symbol of Utah) and Landscape Arch at The Devil's Garden (My friend said, "If this is the devil's garden, what would God's garden look like?"); hiking the next day just south at Canyonlands National Park, which we seemed to have all to ourselves, unlike Arches.

After a short detour up to a hazy, breathtaking view (Island in the Sky) of the confluence of the Green and Colorado Rivers below, we drove south to Mexican Hat near Four Corners. (--Hazy because the smoke from the Southern California fires extended all the way to Colorado.)

The sky cleared as we crossed the Arizona border to the south, hiked--tromped the Wildcat Trail in Monument Valley and then drove all around and through it on bad roads. (Monument Valley, by the way, is not one of the national parks. It is a Navajo Nation tribal park.)

We then headed north west up into Utah again, over The Rainbow Bridge where the Colorado River flows through Glenn Canyon Recreational Area upstream of Lake Powell, and up around into Goblin State Park to climb the hoodoos. (It was like being small inside the kind of sandcastles you make by dripping wet sand off your thumb into little towers).

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On Halloween I had a medical crisis requiring antibiotics, (which would not have become a crisis if I had been willing to deal with it when I first knew it was a problem several days before, but I wanted the trip to be perfect.) We were at the visitor center at Capitol Reef National Park (in Utah again, still) when I suddenly blurted out to my traveling companion/driver, "I seriously need to go to a medical clinic now." An attentive park service person overheard me and gave him map and directions to a clinic in a very small Mormon-ish town nearby before he could ask any questions. I told him what was going on sheepishly in the car on the way there.

On the waiting room wall of the clinic there was a bulletin board of prevention information, including West Nile Virus prevention--but no hint of HIV anywhere. There was no HIV or AIDS even listed on the intake form of medical conditions to check off. I wrote down "suppressed immunity from HIV" anyway at the end of the description of my problem, along with listing a select few of the many medications I take in the small blank allotted for that purpose. My hand was shaking, and I could hardly fill out the form.

On the wall of the examination room there was an abstinence poster. --It did not say "abstinence," exactly. It was actually a well-designed poster targeting youth about establishing personal boundary decisions and making game plans ahead of time for dealing with peer pressure and possibly tempting situations. --But even being forty-one years old and having dealt responsibly with being HIV-positive for twenty-one years, I still felt, looking at that poster, like I was the bad kid who'd failed. The poster wasn't like the comfortably matter-of-fact San Francisco HIV prevention posters I'm used to.

The doctor was calming, but she asked me if I lived there, and I had written my address on the intake form--so I don't know if she had read that I had written there also that I was HIV-positive or not. Maybe she was just been trying to make light conversation. But I wasn't going to clarify anything out loud. It's hard enough to say "San Francisco" some places, much less "HIV-positive," regardless of the fact that San Francisco is in my life because of HIV--not the other way around. All medical personnel are supposed to use universal precautions with every patient all the time, so I don't know if it was wrong of me or not to not say it. Maybe she did know and wasn't saying it because I was making her nervous, too.

She prescribed the medicine I already knew I needed and got it for me, thankfully, before the adjacent pharmacy closed. She was as nice as she could be, and asked as I was leaving what route we were taking and told me it was a good thing we stopped where we did medical care-wise, and that the next two days would be the most beautiful landscape we would see. (It is true that it turned out to be probably the most beautiful road I have traveled.) And my companion was as supportive as he could be about the whole health problem thing too. And I was better in a couple of days, but I still feel bad about it. There are plenty of other health problems that easily could have gone wrong on the trip that didn't, though, I guess.

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Our doctor-recommended road went vertically west to the much cooler timberline of Dixie National Forest and then down along The Devil's Backbone into Zion National Park where we splurged on a comfortable room and good dinner at the park lodge. I bought dinner.
In the morning we walked the Zion River Walk and tried to hike up to The Narrows of its canyon, but the river was swollen up over the trails to the canyon walls on both sides. So we, being how we are, took off our shoes without hesitation, rolled up our pants legs and tried to balance our way upstream through the icy current on slippery mossy rocks. We were thoroughly invigorated by the experience, and didn't fall, but didn't make it very far. On our way carefully back downstream, we were called "courageous" and "stout" by passersby who were decked out with waterproof layers and rented waiters and hiking sticks.

The next day we drove to nearby, indescribable Bryce Canyon and hiked around the Amphitheater and walked back part of the Rim Trail.

We went south and west to Saint George, Nevada where we hiked a Wallmart in search of a cheap tent, sleeping bags and flashlight for camping three days at Death Valley, (mid-California) where I spent a full day stretched out in the sun, working on my school and financial aid applications, and worrying. (We drove there through Las Vegas which I could find nothing good to say about except for the warm dry weather. - I'd been there long ago, but not in daylight.)

We then headed back...Mono Lake again...north way around above Yosemite...down through Angel City...across the San Raphael bridge to a hot roasted pepper and corn chowder supper with wine at The Depot in Mill Valley...then, San Francisco.

I can't say that I'm glad to be back. Or glad at all that my friend is leaving tomorrow.

Visitation

2007-10-23T20:21:00.000-07:00

I should not be on this addictive, borrowed laptop right now. The longterm, infrequent, faraway, romantic friend I mentioned in Disclosure and Risk is due to arrive at my doorstep any minute. (From Antwerp. From working for the International Red Cross in Chad, and then Yemen since I saw him last.) (I hate linking anything about him to my "Disclosure and Risk" incident at all, but so has gone my life.)

I discretely chewed off a white rose from the sidewalk garden of Grace Cathedral today on my way home from the Castro Street Pharmacy in the Tenderloin, to give to my good friend when he gets here. (It wasn't coming off any other way.) Otherwise I have not eaten.

All my extra medicines (two weeks worth) were successfully authorized and picked up.

We--my longterm, infrequent, faraway, romantic friend and I, are planning to take a road trip. For two weeks. Through the mountains, toward Utah, down into Nevada, and then back over to Death Valley, then maybe hitting the old Ghetti Museum (the "Ghetti Villa") in Malibu on the way back, dependent on the fires. We'll be camping (--for the most part) in the desert. That's a lot for me. I asked my psychiatrist (at AIDS Health Project) if he thought all that might not be too much. He said, "No. No. Have a good trip."

I will miss, and worry about my cat. But I think she will be OK. I think she will be tended well.

I'm not bringing this laptop, but I'll write some about the trip when I get back. Thank you for reading thus far.... I'm leaving the comments setting on "unmoderated," if you'd like to post any. I look forward to reading them when I can.

He's here.

Love and Hot Water

2007-10-23T14:06:00.000-07:00

The hot water at my apartment is back on.

This morning I made an unsuccessful charcoal rubbing of a carving I made in the door of the third floor landing of some backstairs in this building, during the time period I was diagnosed psychotic. (I've had episodes before and since, but there was only one time in my life I was involuntarily psychiatric-ally hospitalized--last November.) The charcoal rubbing today didn't turn out as well as the carving did then.

The carving, sometime last October, happened because I had felt urged/compelled to heal the apartment building by filling in the "Fuck" part of the "Fuck Quan" graffiti already carved in that door, and by then carving the Chinese character for "love" in between that and "Quan." (The Quan family are the owners and landlord. I feel safe to say their name, because this is not their only building, and because they are not the only Quan's in San Francisco to own buildings, I would bet. And because no one, for the most part, uses the back stairs--which is why I used to use them.)

I had made a little camp on the second floor landing on a couple of the stairs and floor with all my rags, equipment and coffee. I remember, vividly, filling in the "Fuck," carefully with mahogany-stain furniture filler, then sanding the surface smooth, dusting that, then blending the color, never perfectly enough, with brown shoe polish. It took hours. I was afraid someone would hear me, and I would abandon my little campsite and come back to it went it felt safe.

I used my Leatherman pocket-knife and a stencil I already had that I had bought from a crafts store in Chinatown, where I live, to carve the character for "love." (The front side of my building is definitely another neighborhood--rich, but the building is the edge, and I am on the back side of it, looking out over a roof of colorful clotheslines to the mid-level of the tall buildings of the financial district down the hill; I can see a little of the blue bay behind the Hilton, and the ships from faraway passing this side of Treasure Island, and the pink-orange sunlight gleams off the Transamerica Pyramid back at me, and twinkles off the slope of Berkeley beyond in the evenings. When there is no fog. My cat watches very few birds--seagulls, and the Blue Angels during Fleet Week--she's become fearless about that--and fireworks for the fourth of July and for many Chinese Festivals every year. We have a lot of sky in these two rooms.) I'm sure there is more than one character for "love," but I used the stencil that I had.

It took a long time. I cut myself, and unintentionally bled on my work.

When it was perfect enough--(it really is well-crafted, which is why I wanted to make a charcoal rubbing of it for my apartment--I don't know why today),--I dusted it off, and collected my stuff. I went down later to sweep the whole stairwell, quietly, from top to bottom--fifth floor, fourth floor, third (--my cat's and mine), second, first, the basement (--where the dollar-and-seventy-five-cent washers that don't always, but usually, work are), and then the scary floor below the basement (--where the dumpsters are). I didn't go below that, (which you can, to get to the heavy dungeon-clanging, arched, black metal gate into the inside of the Stockton Tunnel).

Someone--I think I know who--I think it was the woman who used to live on the first floor who was evicted six months ago for making terrorist death threats--who told me privately she was going to kill the landlord's family--later scratched out the word "Quan" in what looks like a frenzy. She--I'm guessing, did not stain her mad scratches, which are now a little furied scratchy cloud below the careful Chinese "love," below the "healed" "fuck". She left the "love" alone. And what is the landlord going to do about that.

Ice

2007-10-22T21:52:00.000-07:00

The hot water in my building has been out for the last two days. I don't know the day before that because I didn't take a shower that day.

I'm reporting it here because there is no sense in reporting it to the landlord at this point.

I shouldn't complain, because of all the problems that have happened in this building in the five years I've lived here, this hasn't been one of them.

Newsweek in time

2007-10-21T20:05:00.000-07:00

Regarding "telling the world," in my previous entry, Breast Health Awareness, continued--I really did do that. I told the world. I was in the irresponsible cover story of Newsweek in the middle of the nineties, entitled, "The End of AIDS?" To see a picture of the cover of that issue, see NIH. I'm not kidding.

If you wanted to know who I am, you could figure it out that way. I used it as ID once before. I was not allowed on a plane at JFK, (several years pre-9/11), when I had lost my ID the week the issue came out. When my excuses with the airport security guard failed, I ran to the nearest airport concessions stand and bought a copy of the magazine. I ran back to the guard with the issue opened to the first page of the article with my white girl picture subtitled with my name and HIV diagnosis date. The guard had no idea what to do with all that information and let me board my flight.

In my long phone interview with Newsweek, in the middle of the nineties, I said over and over again different ways that the advent of protease inhibitors was not the end of AIDS. A lot of people, at least here--San Francisco, knew that well already. The interviewer kept asking me the same questions different ways, like he wanted to catch me saying something that sounded like I was saying I was healed, when I could hardly take those meds side-effect-wise. (Interleukin was the trick for me, later, not protease inhibitors.)

I didn't look sick then, but that didn't mean I was any better,--yet. They sent a local Newsweek photographer to take my picture at a board/dinner/cocktail meeting. You can't always take a picture of disease. We didn't all have wasting and Kaposi Sarcoma lesions.

I said to the phone interviewer that the new treatment options were hopeful, but that their results were different for different people, and difficult--to impossible for some of us to take, and that not everyone had, or would have access to them. And that to suggest the end of AIDS--(albeit with a question mark, and the small text title qualification: "Not Yet, But New Drugs Offer Hope")--would jeopardize prevention efforts, and funding for the supportive services that access, adherence, and good results depend on.

But that wasn't Newsweek's story. So they put me, first picture in the article, looking well, (and young and white and female), with my name and longterm-survivor date of diagnosis--which had nothing to to with the new drugs offering hope--without using a word I said. As evidence of what wasn't true.

I told the world a lie, smiling, mute.

But I am, for all kinds of reasons, one of the ones still here, still with AIDS, to say what I want, for whatever it's worth, to try to make up for it now.

Breast Care, continued

2007-10-20T20:26:00.000-07:00

continued from

I like the idea of dying of breast cancer. That's the real reason I didn't go to my follow-up appointment. I understand that's distorted. I understand that is not a viable thought. But this is my explanation:

I am not dying right now but I was dying for a long time in the early nineties. I know what I'm saying. It's real to me that I really am going to die of something, and I'm sick of AIDS. I don't want to be sick at all--I just can't imagine not being in a battle, and I want a new one to take over this one.

Breast cancer is a new idea. I'm not dying of it either, or sick of it. I just have a probable fibroadenoma---benign. But the idea that I could die "naturally", of something I didn't acquire...after all this.

It's not that I think my being HIV+ is my fault. I was 18 in 1986 when I got infected. My sin was seeking refuge from a man much older than I was whose past I did not, and don't really know. He died before I could ask. No one really knew what was going on. No one knew anyone who had it, where I lived. It isn't about sin, anyway. But as I knowingly flirt now with the improbable idea of a possible new demise, I do feel like it wouldn't be my fault in a way I don't feel now. The idea is a relief. Breast cancer as redemption. I don't expect anyone to understand that.

And the fantasy that I would fight breast cancer makes me feel like a woman. That's not a fair because some men get breast cancer, too. (I bet their sexual identities are affected the way mine is having AIDS as a straight HIV+ person in an overwhelmingly gay, gender-segregating care community.) But the thought makes me feel feminine,...the post-mammogram sonogram...something growing inside me instead of trying to eat away at me using my genetic identity to replicate its separate, biohazardous self. I would have a wounded sexuality, rather than a deleted one. A pink ribbon.

Breast cancer isn't opportunistic. Rates are not higher in women with HIV than in "normal" women. It would make me feel normal, for real.

And it would be private this time. I would not tell the world without being able to take it back. It would belong to me. I have known about my little kidney-bean shaped tumor for six months without telling anyone. Till now. This writing here is what will make me go back to my breast care center. My doctor is in Uganda. She's not going to remind me.

I am not feeling sorry for myself. These are not excuses--I am going to go back. These are just the realities of my experience. A lot of of-age women don't get mammograms because they don't know breast cancer is preventable, or don't want to think about it. (Many places offer free screenings in October, if money is the reason.) A lot don't go because they don't trust medical care. These are just the versions of my obstacles. I will reschedule my follow-up on Monday. And I hope other of-age women go get checked out, too.

Mayo Clinic breast cancer prevention information

Breast Care

2007-10-19T17:19:00.000-07:00

I wasn't going to write about this yet, but I found a cat-chewed appointment reminder telling me I had an appointment I accidentally-on-purpose missed today at the San Francisco General Hospital Avon Comprehensive Breast Center. I didn't remember what day it is. October, which it is, is Breast Cancer Awareness Month, so I have been feeling continually made aware. But I didn't go anyway, today.

This appointment was a follow-up for an appointment, I did go to - by the Breast Center's calculations, six months ago already.

The appointment, then, was optional. I am 41-years old, already. Mammograms are suggested, but not recommended till 45. But a nurse examining me said she felt some "thickening" in my left breast that I shouldn't worry about - a lot of women have that, but that I might want to have checked out.

So I made a first appointment and went to the very new-feeling, clean, quiet, matte pastel-"feminine" SFGH Avon Breast Center. (I don't know if my appointment time was unusual for them or something, but I didn't see any other patients. I'm used to the semi-gloss primary color-painted, packed and busy SFGH HIV ward two buildings over, and six floors up.)

I checked in, didn't have to wait long to be called to the clean empty, little locker room, to lock up my clothes, and put on my pastel gown, and go to a room with big, heavy equipment.

An expeditious radiologist told me to remove my gown, and squeezed one breast, then the other, between big metal plates that took pictures of their insides. (It was definitely uncomfortable, but OK.)

She told me I could put on my gown and she'd be back in a minute.

She came back after a long minute, and said we needed to do the mammogram again, which we did.

She came back again after that one and said that my mammogram was concerning, and that I needed to have a sonogram, (breast ultrasound). I could either make another appointment--if I promised to do it for soon, or, if I had time now, we should do it now.

I said now.

I asked her what was concerning, and she said that I just had a spot on (/in) my left breast, a cyst, and not to worry--that a lot of woman have them, but I should have it looked at.

So I was led to a smaller, darker room, with a smaller machine.

A very doctor-ly Indian woman came in and asked me to remove the top of my gown and lie back for the sonogram.

She examined my left breast for a long time.

I could see my cyst on the monitor she was looking at.

She said it was definitely not a cyst. She wasn't sure what it was. Cysts are round, and light doesn't show "through" them on the screen because they're fluid-filled. Cysts look like dark circles. This was shaped like a kidney bean, which I could see.

She went and got someone else, who watched as she examined again.

The first "doctor," the sonographer, said that I had a small tumor, but that it was nothing to worry about--that a lot of women have them. She didn't stop examining it, though.

She said it didn't have anything to do with my having suppressed immunity from HIV, when I asked.

All I could think about, watching the screen with her, while she moved the small, cold--at first transducer around my lubricated nipple, was what it must feel like for pregnant women to see their embryonic babies for the first time. With this same equipment. To see the little heartbeat.

It was a similar strange/guilty/fearful excitement of many, many moons ago, thinking I might be pregnant, knowing that it was not the right time. It was never the right time.

She said that the good news was that she couldn't see any blood vessels attached to my little kidney bean of light. She showed me that the edges were "smooth." She told me it was probably a "fibroadenoma," which was OK, but should be watched. The other doctor said nothing after introductions.

The sonographer said I could either go ahead and schedule an appointment for a biopsy so we can know for sure, or we could just do this again in six months to see if it's changed in that time period--which is what she recommended, as long as I absolutely promised to come back then.

I had said OK.

continued...

Breast health

Vagaries, continued unpredicted

2007-10-18T20:26:00.000-07:00

The difficulties, and mistakes expressed in this blog, are also not about not appreciating the people who have professionally, and personally worked hard caring the ways they can, for and about me, and for and about my sweet, old, shiny, black cat-- thick sometimes and thin sometimes, for a very long time.

Sustenance

2007-10-18T18:23:00.000-07:00

Tonight I had quick grits with real butter and salt and a lot of pepper, and Anchor Steam beer for supper. With 11 pills for dessert.

Vagary

2007-10-17T13:04:00.000-07:00

I wish I could write this directly. I have to be vague about the place to write about the conversations, or be vague about the conversations to write about the place:

I went to a support group today. A man with AIDS was crying about the grueling process of finding housing to match his housing voucher, which he did express gratitude for at the same time. He then regressed into discussion about what "home" means as a survivor of longterm childhood sexual abuse. Other attendees of all kinds were beautifully, sincerely supportive. I didn't say anything. I don't know why.

The man talked and cried for a long time.

The group facilitator, who had facilitated the whole group process well, and who knew the crying man well from years of case management, said something, rather quietly to the side, about a "pity party."

I don't know anything about the crying man, or about how much or how he cries, or why, and I have trusted the facilitator so far, so I can't say anything else about it.

But I can say, here, that a lot of what is expressed in this blog--through essays, stories, and comments--is difficult. I need to say things here that aren't said, or to describe them in human and personal terms different ways, whether they are said or not other places. I say things here that I don't express other ways in my life. I don't know why. But I know it's about seeking understanding for some reason, maybe indirectly. And I know that it's not about seeking pity.

Disclosure and Risk, continued

2007-10-15T23:59:00.000-07:00

I was fine in Michael's apartment. Bad, but fine.

But afterwards he said that he wanted to make a last run to his storage unit for the day, and then stay at my apartment, since he hadn't finished packing but had no furniture to sleep on, and since it had gotten late to hit the road. And technically he had two more days on his lease, even though he had told the landlord he'd be out. He said we could go to dinner, dispassionately.

I did not want him in my apartment. I wasn't hungry.

All the sudden I felt as vulnerable as I should have felt in the first place. I did not want him to know my things. I didn't want him around or to even see my cat.

I said, "Are you allergic to cats?"

He said, laughing under his breath, looking down with his chin tucked, "Would I tell you if I were?" And then looked up shaking his head and said, "No. No, I'm not allergic to cats."

We went to dinner. We had calzones that were too big, and too expensive for me, at Coppola's in North Beach. And more wine, which helped. We walked "home" to our apartment building, and when he went to his apartment, I went up to mine to take my medicines and quickly scan at all my objects privately through strange company's eyes.

Michael came up with a tool box, and asked if he could leave a couple things with me for the week till he could come back up from LA on his second run the next weekend to pick up his last load from storage. And if maybe he could stay over a night then, too.

It wasn't OK, but I said that it was. I told myself that it wasn't that big a deal, his stuff only a week in my space. I should be able to ignore it. I wanted him out.

He went back downstairs and came back with a moving box, a duffel bag over his shoulder, and unloaded them in my kitchen with the tools.

I didn't feel like I liked him anymore, but that I was in no position to complain, about anything. So I boxed up my feelings to enjoy anything about biding the unusual time.

He stayed that night and the next. He introduced me to taking straighht espresso with a lemon rind twist at at Il Caffe Rulli early the first morning. I thought that I should be able to enjoy playing like I had a boyfriend for a weekend, since I supposedly missed that part of my life so much. I thought that there was something wrong with me for wanting him out. (Not that I thought he wasn't feeling the reciprocal acting. He just needed what he needed. He was biding the time "politely", too.)

I couldn't say no, also because I felt like I should feel good that anything I had could be helpful to someone else, since my life is dependent on so much anonymous assistance. None of my things were even really mine.

Michael gave my cat his red feather boa. A big dyed red bird. She didn't care for it. I kept finding feathers weeks past the fact, after I'd put the boa in the dumpster in the basement. After he was long gone. (I wonder what the woman on the first floor who investigated the trash, who told me, "The man upstairs likes your boots," who knew all my medications, thought about that one.)

I had enjoyed what I thought was a clean hello/goodbye the first bright afternoon with Michael, but I was surprised that despite all my loneliness, I had in the end, literally not wanted baggage at all even for a night.

Maybe all of those feelings had something to do with something about Michael, personally, too though.

Disclosure and Risk

2007-10-14T04:02:00.000-07:00

A couple years ago:

It was a bright day. I was on my way home to my apartment building. I was in a cynical mood about people who had chided me repeatedly while acting nice.

There were moving boxes on the sidewalk in front of my building, and more boxes piled haphazard around a small blue hatchback with so much stuff in it you wouldn't be able to see out the back window. The gate and front door of my apartment building were propped open.

As I walked through the front door, a man coming down the stairs from the second floor landing peaked from behind the large box he was carrying, and said cheerily, "Oh, I never got to meet you," with a smile.

I said, "Yeah, OK."

He kind of snort laughed, "Yeah, OK?" And then said with mixed sweetness, "Like, 'Yeah, OK, I never get to meet you?' or 'Yeah, OK,' you want to come up and have a glass of wine while I finish packing?"

I walked up the stairs past him there holding the box. (I'll call him Michael.) I got to the second floor landing and went into the open door of his studio apartment without saying anything, and dropped my backpack on the shiny wood floor. This apartment got more light than my apartment does.

There was no furniture. There was a full, open, closet. There was stuff and books, and more boxes, packed and empty all over the room. I didn't know his last name or anything about him other than that he always felt fresh. Nice smile, clear eyes. Agile. The alcoholic woman on the first floor below him had told me, randomly, that he liked my boots. I assumed he was gay.

He came into his apartment several minutes later, jacketed arms free, and paused, unsurprised. He exhaled, "Well," with a smile, closed the door behind him, and walked to the kitchen. I heard him take glasses from the cupboard. I guessed he saved the kitchen packing for last. I heard the refrigerator open.

He walked back into the room and said, "I like your boots," and went back into the kitchen. I said, "Thank you," through the wall.

The corked popped. Some shuffling.

He came back into the room like a waiter with a bottle tucked under his arm, two glasses in one hand, and a plate of cheese with red wax peel, and a knife in the other.

He set a "table" on one of the packed boxes, and pulled two others up to it.

I sat down and crossed my legs.

He poured our glasses. We cheered to nothing.

We talked about his moving out. He was going to LA. We talked about his work, and the building...the landlord, the woman downstairs, and Everett. Nothing about me. He was going to drive down the coast. There were problems with his storage unit...two trips...too much stuff....

He poured me another glass of wine and got back to packing. I got up and sat down on the floor, boots crossed, with my glass, and interviewed him, prompted by his objects. Why do you have that? Was that book good? Why so many text books? Are you Catholic? Why do you have a red feather boa hanging in your closet?.... I learned a lot about him.

I was enjoying the wine, and not helping, and the active imbalance of disclosure. I am used to being romantically disqualified by men in my life, (with one wonderful, long-term, infrequent, faraway exception). I don't try to meet new ones. And I'm used to people knowing more about me than I know about them. I can't simply answer, "What do you do?" without being more deceptive than I want to be, or revealing more about my health than I want to disclose. And most of the people in my day-to-day life, actually, are health care providers who know very personal things about me, who I know next to nothing about.

But then Micheal abruptly stopped his sorting, and answering, stood upright, and said, "Well, now what about you?"

The wine and cynicism made me bold to say, "I don't want to say anything about myself."

He said, "Why? Are you hiding something? Is your life a secret? Are you...HIV-positive, or something?"

I found out later that the woman on the first floor had been going through the trash for years, and had collected all kinds of information about me, including the medications I take. I realized, then, that she probably had told him I was HIV-positive, like she had told me, "The man above me likes your boots."

I said, "Yes," believing that he didn't know.

He came over and kissed me.

to be continued...

Left Out

2007-10-12T13:27:00.000-07:00

Today I am expelling myself from my apartment to go talk to Financial Aid at the small, private, ultra-progressive school that Isabella [see Bad Blood] went to. I sent in the application last week, and I had my transcripts sent the last time I applied (but didn't follow through), so maybe they still have them on file.

Isabella got through on loans. I'm applying for grants and scholarships. They used to have scholarships for women with HIV, but like Isabella, I wouldn't want to use that.

I'll use the things that I did, that I could do, when I could, about being a human being with HIV, though.

I'm scared. I have to go.

Everett

2007-10-10T13:36:00.000-07:00

My neighbor upstairs has been railing for about ten minutes. He can go for hours. There is nothing you can do about it no matter how threatening it feels. He called the fire department once for no reason, and then when the firemen came he called one of them a bitch. The fireman was, like "Excuse me? You just called me a bitch?" And the other one told him to ignore it and go.

Even when he crashes things down out his window onto my across-the-hall-neighbor's fire escape, the police say you can't do anything unless he is threatening someone directly. He crashes things on his floor so hard it has knocked something off the shelf in my kitchen once, and his apartment is not even directly over mine, but that doesn't count as threatening. Once he yelled out his window that he hoped I electrocuted myself, but he didn't say he wanted, directly, to hurt me. I try to not hear what he's saying anymore--just think of it as bad weather. It doesn't happen as frequently as it used to.

But just a minute ago, he came down the stairs yelling and said, "I'm going to kill you, you fucking bitch. Are you sleeping? I'm going to fucking murder you." I tip-toed to the door to look through my peephole to see if it was my door he was talking to, because I do sleep during the day, and he knows that my neighbor is gone to work 8Am to 6PM every day, but I could see him with his shirt off in his hand, pressed up against her door with his ear to it. Then he said, "Every last one of you's--you're all leaving before I do." And then he went back to his apartment upstairs and opened his screechy fire escape window and slammed it shut.

Everett is his real name. I felt guilty for refusing to testify in the landlord's eviction case against a woman on the first floor who was jailed for "making terrorist death threats", (jailed for six days which she bragged about afterwards). She told me she was going to kill the landlord's whole family and I was too afraid of her to tell anyone. I didn't want to exacerbate it all if she didn't mean it really. But how can you tell? I knew she liked to scare people. I hoped she would just go away, and she did. Everett calmed down after she left. She had told him that the woman accross the hall from me was homophobic, which is absolutely untrue, and that I was mentally unstable and paraniod. She knew what medications I take from going through the trash.

I am definitely feeling the adrenaline jolt now, but I'm not reporting anything about Everett's new death threats, because I'm just tired. I'm too tired of this to feel scared anymore. Just numbed tired. I don't know if that's wrong though since technically he did just threaten my neighbor's life. I would think of an excuse to leave, to go outside for a little while--he can't tell when I come and go like the woman on the first floor watched--but I don't want to leave my cat alone here while I'd be gone.

It doesn't feel real. It feels like he's play-acting in a movie, for his own entertainment, thinking of scaring me since he knows I'm probably here. It feels like he likes to feel, or just needs to show that he feels that no one is going to do anything about anything he does. Regardless of the first floor woman's eviction.

This is a very nice bulding on the edge of a rich neighborhood. The family who owns the building offer a lot of their units to people with Section 8 vouchers and other subsidies. Some of the tennants are awarded the help with rent because they are very old. Some of us are problems in other ways. The reasons are technically not the landlords' business.

Everett is completely cordial in an actor-ly way when I've seen him on the street or when we've passed each other in the hall. Like neither one of us knows anything about it.

He's smashing heavy things on his floor, then being quiet long enough for you to think it's over. Now doing it again. He's in the hall again. Kind of chanting something. Now he's singing. This is my report.

Bad Blood, continued

2007-10-09T17:35:00.000-07:00

continued from

I saw myself kind of after-the-fact kind of fumbling around at the desk with exchanging the signed permission slip for my money. I didn't notice I was out of kilter till I saw the reactions to me at the desk. I said that I was late for an appointment I had to get to now, and that I would come back afterward to finish the questioning. They kind of said OK with question marks.

Isabella and I used to be equals. We were the same in the ways we weren't opposite. We are the same age, I'm older AIDS-wise. I worked on the board of an agency she worked for, but it felt like work of equal worth to me. She was paid. I used services. I'd tell everyone I was positive before I'd tell them anything else about me, so I'd know how they'd react from the start. Isabella was discriminating. Her sister knew, but she's still never even told her parents. We are both straight. She tended to be self-assured, outgoing, and curious. I tended to feel lonely and to want to be wanted. She went back to school and finished. I went back to school over and over again, but kept having to start over. She has an adult career now and I finally even gave up on volunteer work. She washes her white dog's feet off when they come in from walks. My black cat stays clean and doesn't go outside. Isabella became a therapist fast without ever really going through therapy it seemed to me.

Before I knew it, I was at my psychiatrist's office at AIDS Health Project. I apologized for being almost 15 minutes late for my appointment with him. The receptionist looked confused and said she didn't think I had an appointment, but to have a seat. My psychiatrist came out at noon with a patient leaving. He told me my appointment was at 11:30 on Monday. It was still Friday. But he told me to come in anyway. I was worried I was taking up his lunch break. He said, "Yeah well that's not don't worry about it."

We checked in about my meds and problems with them for about ten minutes, and then I said offhandedly in the middle of something, "I just ran into Isabella for the first time."

He said, "Yeah? How did that go down?"

I told him about the hallway. And that I was in a hurry going down it, and he said, "To come here?" and I said yes and realized that I'd confused the appointment times by believing my own would-be excuse to not have to stop and talk to her. And I said that I had said hi, and that she ducked and went like this: and put my hand up to shield my face from him. I was a little out of breath describing it. I was going to say, "And now I'm pumped," but didn't, and he said,"And now you're pumped," and I said yes that that was the word I was going to use.

He said,"And what are you doing the rest of the afternoon?"

I said, "I have to go back. We didn't finish. I'm supposed to go back. But I'm not going back there. If she's working there now I'm quitting."

He asked what the study was and I told him, knowing he already knew, without really knowing what he was getting at with that.

He saw the cotton ball taped to my arm right as I remembered it and said, "Do you want to get rid of that?" I said a quiet yes with quiet finality.

He reached behind him to get the lined trash can and held it out to me. He said with believable compassion in his voice, "I don't think that's doing anything for you anymore," and I pulled off the tape with the cotton ball and my little spot of blood and put it into the lined trashcan without touching the sides like it was poison, and we didn't say anything more about it.

Bad Blood

2007-10-08T12:24:00.000-07:00

Today I called to withdraw from a clinical trial I've participated in for a couple years. I'm not going to be specific about which study it is or where the clinic is, but the trial is a longitudinal study comparing relationships over time between living circumstances of low income-women with AIDS, their risk behaviors, adherence to treatment, and laboratory test results of bloodwork.

Appointments consist of the taking your weight, blood draws and check-ins about doctors and meds, health isuues and degree of disability, housing situations, and social support. There are interviews about psychological vantage points and emotional wellbeing. There are questionnaires about specific sexual practices since the last visit, and recent drug use.

The easiest part is the blood draw. The one-to-10 scale health issues questions confuse me. I have no idea what to compare myself to, so I have no idea what to say. And questions like "Would you say your health is poor, average, or excellent," are impossible to answer. If you are asking me as an ordinary person, I don't know. It's either poor or excellent, because it's not average. If you're asking me as a person who has lived with HIV for 21 years with an AIDS diagnosis for twelve of those years, then my health is excellent by far no matter what my body is doing, as long as my heart is beating.

Reporting all the drugs I have not done makes me feel like I have, without trying, done something "right," but reporting no sexual behaviors is just as difficult for me as having to describe them would be.

The same people have worked with me all along. They are very professional and matter of fact in a kind way, but also in a warm and familiar way. I haven't noticed how long the appointments take, but I have come out usually feeling kind of drained, but known and cared about. We are called in once a month and are paid thirty dollars per appointment.

I went in for my last appointment two Fridays ago. It was the first time I'd been in in a couple months because I had been out of town, in New Orleans. I got through one of the interviews more easily than usual and noticed that my answers seemed more emotionally stable than typical for me. A little more optimistic--or normal.

I had my blood drawn by a woman who had already known my name when I first started here, because she used to work at HIV Care, Ward 86, at San Francisco General. There are pictures of her sons on the wall, like there were there. She butterfly-needled my vein, drew several little vials of blood, snapped the needle back. She put the labled vials on a rack while she pressed the cotton on my arm, and then taped it. We said thanks and see you later.

The reason this was my last appointment was that as I went out the phlebotomist's door into the bright yellow-painted hallway, I saw at the end of the hallway a woman I will call Isabella. She stood in a circle of people who work there, but not with me. They were all laughing about some story. She looked the most comfortable of them leaning back against the wall, her hands behind her hips flat against the wall behind her. They (maybe six people, men and women) would have all been taller than she even if she'd been standing upright. She seemed, and is, very small. She was wearing a black shirt, jeans, a black belt, and black boots. Her hair was pulled back in a bun. She was smiling, and her face was flushed from a laugh.

My first reaction to seeing her was an adrenaline flood of fear. We'd unexpectedly ended a very long and strong friendship on horribly bad terms about a year ago, and I hadn't seen her since. I had told her to stay the fuck away from me which I've never said to anyone--and that if we ever ran into each other somewhere, I would be the one to leave. She was at the end of the hallway I had to go all the way down and turn right out of, right in font of them all, to get out to the waiting room to find out about what I was supposed to do next.

I was glad I saw her first, had warning, and that she was encircled. I went very fast thinking maybe I could get out without her seeing. I had a hint of thought that if I had to talk to her I would say something rushed about being late to an appointment. I had a hint of it in my head that that appointment was with my psychiatrist, but I wouldn't say that. I didn't know what else....

When I was almost to the door, she turned her head toward me, and looked up without seeming to recognize me. She is a therapist now so I don't trust her expressions (or lack of) to be real. I said hi without showing recognition the first split second but then the eye contact felt to me like time got crossed clean through and she was just Isabella, and I was just me. And I smiled carefully at the edges. But she gave a soft, flat, monotone, careless-seeming hi back with no response at all in her eyes. Not at all. I wouldn't be able to do that caught off guard so close and fast like that--I couldn't even do that with warning--but maybe she did have warning. Maybe she'd anticipated that we might run into each other at this place, her place now, and planned it this way--thought it through ahead of time. She was tired of HIV last time I knew. So I thought I was safe. I hadn't anticipated she'd be here on any terms. Maybe didn't just know these people somehow related to her work. Maybe she worked here now. Maybe she'd even seen my records.

My reaction at this point, along with the adrenaline, was overwhelming relief that she was alive. She hasn't been positive for as long as I have, but she's had HIV a long time. And the last I knew her T-cells had come down to not much higher than mine and she'd said, "I just don't feel like putting those poisons in my body right now," about the medicines she was advised to take, and that she knows I take to stay alive. (It hadn't seemed to me that she was very sensitive to other people for becoming a therapist.) I was hoping she'd go back to meds when she was ready, but I couldn't know anymore. I couldn't tell at all whether the people around her knew at all.

I was glad that my reaction to her looking so good was relief before it turned to envy and self-consciousness. (In the tangled mix of all the reactions to our friendship's breakup had been fear that she would die and I'm not even in contact with any of the people we used to know in common, and I wouldn't even be told. How can you resolve anger and personal hurt from a fight when it's mixed up with that?)

Her face was rosey. I know my palor. She didn't have circles under her eyes like I do. She was wearing make-up; I wasn't. She was being some kind of professional, whether visiting or staying. I was wearing flip-flops and coming out of a nice interrogation about the most personal things of my life as a low-income woman with AIDS, with my cotton ball taped to the vein of my arm, going to the waiting room to pick up my thirty dollars and get my instructions for the next part.

The eye contact between us lasted the amount of time it would take for two people who didn't know each other saying hi in a hallway. She broke it and ducked her head and pushed herself up away from the wall, and even raised her hand to shield her face and bent her body straight forward, a thirty degree angle forward into her circle of peers as I walked the last steps toward them and turned right and got out the door.

continued...