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.


M. said...

This is my 3rd attempt to leave a comment. Hope it works. Thanks for "Lost Time: My Bio." M.

+PHc said...

Yes. Thank you for your effort.... And for your comment on the "Needles" post.