Friday, November 30, 2007

Thanksgivings Still

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

Wednesday, November 28, 2007

Locked In

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

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

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

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

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

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

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

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

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

Tuesday, November 27, 2007

Questionable Medicine

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

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

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

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

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

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

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

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

Sunday, November 25, 2007


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I wish this post were more coherent.

Saturday, November 24, 2007



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

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

Thank you. Good Morning.

Friday, November 23, 2007

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

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

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

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

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

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

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

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

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

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

Thursday, November 22, 2007

Thanksgiving with KD

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

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

Wednesday, November 21, 2007


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

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

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

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

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

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

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

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

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

I was at peace here, there.

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

Tuesday, November 20, 2007

Something is Wrong With Me Today.

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

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

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

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

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

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

Monday, November 19, 2007

Lost Time: My Bio

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

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

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

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

My Name
San Francisco
  • I was infected with HIV in Austin Texas in 1986 (I was 18) by a boyfriend who died from PCP from AIDS in Dallas in 1991. I was diagnosed in 1991 (with already low T-cells) a month after his death, without opportunity to ask how he thought he had contracted it. But he was much older than I was, and had been in recovery for an IV drug addiction. He had been living in Los Angeles in the late '70's and early '80's. He had also been to prison when he was younger, for dealing drugs. [All high risk factors together that I did not discuss in my HIV awareness talks to middle-schoolers.]
  • I came to San Francisco from Houston in 1994 for AIDS sensitivity, community (which is no longer as inclusive as it was here), services, and better medical care at SFGF Ward 86. [I knew no one on the west half of the country except one cousin who had moved temporarily to San Diego, and Ram Dass - who got me house-sitting jobs until I could find a place to live.]
  • I volunteered for Maitri Hospice for AIDS when it was still an old house (not up to code) in the Castro run by Phillip Whalen. I was a weekly visitor to the only woman (then) resident there, till she died of PML from AIDS several years later. She lived long enough to meet the newly-adult daughter she had given up for adoption as an infant. (Her daughter had a lot of difficulty meeting her mother, learning about her past, and losing her at the same time.)
  • I have participated in many clinical trials, including the first sibling lymphocyte transfer study, conducted at Saint Francis Memorial Hospital HIV Care by the National Cancer Institute. (My brother has matching HLA markers [compatible antigens]. A percentage of his T-cells were siphoned off, "leukophoresis," marked with a radioactive isotope, and infused into my bloodstream to see if they would be functional, and to see where they would go, and how long they would survive. You could see my organs on a screen in terms of his cells. They didn't last very long and ended up in my spleen.) I don't know anything about what became of the study.
  • I began volunteering on the California AIDS Hotline at the San Francisco AIDS Foundation, and was asked to be on the AIDS Foundation's board of directors in 1995. I served as a member of that board from January 1996 to December 2001, at a time of a lot of love, turbulence, and political infighting. I was on the board of its offspring agency HIV Prevention Project (HPP Needle Exchange) most of that time.
  • I was sent as a delegate to report back to the board of the AIDS Foundation from the International Conferences in Geneva in 1998 and Durban, South Africa in 2000.
  • Through the AIDS Foundation I did a lot of media work mostly to personalize awareness of HIV issues, and to invite support. I did interviews with public radio, local news, CBS Weekend Report, Inside Edition, and MTV. Some friends and I were the subjects of a documentary by Tokyo's TV Asahi that was the first national news coverage on AIDS in Japan. The film crew followed us around here, San Francisco, and then followed me to DC when I was there to read names the last time The Quilt was small enough to fit on the Washington mall. I was part of an irresponsible cover article in Newsweek entitled, "The End of AIDS?" Nothing I said in that interview (which did not fit the story it seemed they had pre-written) was used, but they used my photograph as the first photo of the article ,with my name and diagnosis date, even though my survival had not been due to the protease inhibitors the story highlighted. I couldn't take them. (Immune modulators, IL-2 injections, were the only thing that ever made my T-cells go up. Although easier-to-take later protease inhibitors do help, now, to keep my viral load down.)
  • I was on the speakers' bureaus for HIV prevention education in schools for at least seven years (till they started losing their funding, and I started getting tired of talking about my life as an 18-year-old). I was the first approved regular HIV-positive speaker in Catholic high-schools in San Francisco. I spoke at American Medical Student Associations' Annual Conventions, and for fund-raising events like AIDS Walk San Francisco and the AIDS Rides and AIDS LifeCycle. I spoke on a panel with Don Francis [of IAVI - Internternational AIDS Vaccine Initiative] [and And the Band Played On] at an event to update major donors of the AIDS Foundation. I don't know that he would remember me. My view of who I know and who knows me is distorted. (Sandra Thurman [Director of the White House AIDS Office under Clinton] would probably remember me, but not my name. Eric Goosby [former director of the Office of HIV/AIDS at the department of Health and Human Services, now CEO and chief medical officer of Pangea Glogal AIDS Foundation ] did know me over many years though, and I'm pretty sure he would vouch for me if I needed vouching for.)
  • I rode my bike from San Francisco to Los Angeles three times for the AIDS Rides, and once from Houston to Austin to Dallas, once from Twin Cities to Chicago, once Raleigh to DC, and once Boston to New York. I roadied on AIDS LifeCycle, and I was a member of the board of directors for a year in 1995 of Positive Pedalers a group of HIV-positive cyclists who participate in charity events as examples of positive faces of HIV. I also participated in the AIDS Marathon Training Program and ran the New Orleans AIDS Marathon in February of 1995.
  • I toured with a high school play put on by the New Conservatory Theatre about a girl finding out she's positive, to debrief and answer audience questions afterwards.
  • I had a series of vignettes about living with AIDS published by a zine published by HIFY (Health Initiatives For Youth), in The SUN Magazine, September 1997, and one by Utne Reader in February 1998, and an op-ed in the San Francisco Chronicle on reactions to protease inhibitor phenomena.
  • I was a member of the advisory comittee on treatment adherence for the Mayor's Summit on AIDS & HIV January 27, 1998.
  • I worked off and on for Project Open Hand over the years, delivering meals to the homebound, manning a meal pick-up station, working food-prep in the kitchen, and serving Thanksgiving, and Christmas dinners.
  • I'm presently the author of two blogs: one, +Positive House, focusing creatively on HIV human needs service disparities based on gender and sexual-orientation segregation - that I seem to be the only person concerned about; and one [this one], +Conversations in Time., about my life grappling as best I can with HIV, my past, and attendant problems and hopes.
Next I want to finish at least my Bachelor's degree in anything (despite increasing concentration and memory problems), and I would like to volunteer this summer as a counselor at Camp Sunburst for kids who have or have lost HIV-positive family members, or who were themselves born HIV-positive.

Sunday, November 18, 2007


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

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

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

And then everything happens at once.

Friday, November 16, 2007

Wanted in San Francisco

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

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

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

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

I had enjoyed riding along the water's edge from Bayview, then watching forward through the conductor's wind shield, the dark-lit tunnel under Embarcadero. I had arrived with quieted noise at my usually-too-familiar underground stop at Powell, walked up the two flights of stairs (rather than took the escalator, disabled, tired or not) and met the police officer at the turn-style, not knowing what he was doing there but seeing there were others. It was a raid.
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At the Powell Street Station turn-style, I saw that I caught the fare-receipt monitoring officer's eye first thing. (They were not checking everyone.) And that I must be in trouble for something. I saw myself shuffling like my cat when I'm about to catch her and scoop her out of the corner I've backed her into, to give her her medicine. All dilated pupils, whiskers out, and ears flat back.

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

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

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

So I said, "I dunno." Like I'm fare-skipping all the time. He wanted to know why I didn't have the September stamp either, and I said that I was out of town - which was true - I was in New Orleans. But I didn't say that because I didn't want to be exploiting New Orleans over this.
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The officer didn't tell me how much the fine would be till he finished the paperwork and explained that it was required by law to have your fare receipt with you at all times while riding, and in the stations.

I said, "OK."

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

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

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

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

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

To be continued, no doubt.

Saturday, November 10, 2007

A Displaced Thanksgiving, Early

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

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

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

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

Friday, November 9, 2007

Equanimity Supposed

Return From the Desert

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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