Monday, December 31, 2007


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.

Sunday, December 30, 2007

On Hold

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."

Saturday, December 29, 2007

Exposed by Me

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

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

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.

Friday, December 28, 2007

Uneasy Relief

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

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.

Thursday, December 27, 2007


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.


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?

Wednesday, December 26, 2007

The Day After Christmas

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.

Tuesday, December 25, 2007


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

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

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:

Monday, December 24, 2007

To Everyone for Christmas Eve (except for Sophia)

(Sophia likes Poinsettia more than catnip.)

Full Moon Alone

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.

Sunday, December 23, 2007


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

Saturday, December 22, 2007

Circuity, the Solstice

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.

Friday, December 21, 2007


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.

Thursday, December 20, 2007

Wednesday, December 19, 2007

Bullet-Proof Glass Medicine For Christmas

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

Tuesday, December 18, 2007

Frustration Mixed and Fed a Little

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.


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.

Monday, December 17, 2007

Past Bed Time

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.

Sunday, December 16, 2007

Thank You

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.

Friday, December 14, 2007

Not In a Million Years, continued

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. 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.

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.

Wednesday, December 12, 2007

Not In a Million Years

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

Friday, December 7, 2007

The Mix

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."

Thursday, December 6, 2007

Dream Lost

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.

Wednesday, December 5, 2007

Clinical Observation: Emergency Home Visit

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

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."

Tuesday, December 4, 2007

One Day Late

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.

Monday, December 3, 2007

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

....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. ~

Sunday, December 2, 2007

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

...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.

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

...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