Thursday, May 15, 2008

Sunday, March 23, 2008

Happy Easter

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.


Tuesday, February 19, 2008

Coming back soon.

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.

Tuesday, February 12, 2008

Update for Friends of +PHc

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!

Monday, February 11, 2008

Please keep checking in.

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.

Wednesday, February 6, 2008

Thank you.

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.

Monday, February 4, 2008


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.

Sunday, February 3, 2008

Not sure when will be out.

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

Friday, February 1, 2008

In Hospital

Will write when can .

/ the cat sitter.

Tuesday, January 29, 2008

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

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.

Monday, January 28, 2008

Thursday, January 24, 2008

Rainbow Wishes

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. 

Wednesday, January 23, 2008

12 Days Left of My Own Mistimed Lent

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.)

Sunday, January 20, 2008

Kiss My King Cake

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 Ignore anything you might not like about any of it and remember the simplicity of what it is for.    

Saturday, January 19, 2008

Geodon and Insomnia

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.

Friday, January 18, 2008


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.

Wednesday, January 16, 2008

Telling Then

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).


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."


"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...."

Tuesday, January 15, 2008

The Telling Now

[Update update: 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.]

Sunday, January 13, 2008

Breaking the Shameless Lions' Rules

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.

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.

Friday, January 11, 2008

The Shameless Lions Writers Circle

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.

Thursday, January 10, 2008

New Confidentiality Question

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?

Wednesday, January 9, 2008

"'Results' Results" Results

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.

Tuesday, January 8, 2008

"Results" Results

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?


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.

Monday, January 7, 2008

Gallo's Humor

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.

Saturday, January 5, 2008


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


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,

Thursday, January 3, 2008


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,

Tuesday, January 1, 2008


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.