I am posting the article I wrote, now ten years old, for two reasons. One reason is that (other than the Chronicle's choice for the title) I wrote every word of what was published, nothing was edited out, and I was proud of that at the time. But my critics said that the Foundation must have written it for me. That meant to me, in a painfully humbling way, that what I wrote must have been good enough. This blog post is a very late way to claim my own words even though no one remembers them from then and I'm not even using my own name now. It heals something.
The other reason I am posting my ten-year-old op-ed here now is that although the subject of article was a small expression of an indescribable, pivotal point in AIDS history, somehow most of what I said about that point in time has seemed to somehow remain constant since then. It is painfully interesting to me--bewildering, that after so much turbulence living with HIV/AIDS in the early epidemic, so much desperation for a little bit of time, then such a spike of hope in medicine,... that nothing really happens. For years. The words are still relevant. There are more people. And it isn't news. Here is the article:
New Hope Can Be Hard to Swallow
What it's like living
with the promise, dilemmas
of protease inhibitors
I have 88 T-cells. This is a 20-fold increase in the past five years of my life. Never mind that these new immune cells may not be functional. They may have lost their memory. Never mind that I remember years ago having lost 150 T-cells in one month. I feel privileged.
But this new privilege is hard to swallow psychologically, knowing that the combinations of pills I take cost $15,000 to $20,000 per year while there are people in my neighborhood with my disease sleeping on the sidewalk. This privilege is difficult enough to swallow physically in the relative comfort of my subsidized apartment.
I have survived 11 years of combinations of HIV-related hopes and fears, and at this most hopeful point, my greatest fear is that people who know of improvements like mine—but who do not know of all the care that delicate improvement is dependent on—are declaring the epidemic over; time to dismantle services.
The epidemic is hardly over for the people living on my sidewalk. And even with all the help I rely on (transportation, counseling, treatment information, SSI, Medi-Cal, free clinics, etc….) AIDS is not at all over for me yet either.
My 20-fold increased T-cell count is still less than 10 percent of normal. It’s nothing to bank on so to speak. I still experience days of such fatigue that I don’t get out of bed except to swallow pills. And days of such depression that it is a battle to get up to swallow more.
I am fortunate to be able to take Crixivan, one in the new, most promising clas of HIV drugs. I take it in a precisely coordinated combination with other drugs. I can hardly manage scheduling my regimen to include permissible eating—much less a 9-to-5 job. I could not manage this protocol living on a sidewalk. Dismantle my services now, and you dismantle my new, delicate chances for a future in which I won’t need them.
I feel guilty for being so much trouble for my questionable improvement on paper. But I do feel stronger in general, and it seems that I am looking a little healthier. At a recent event to thank major AIDS Care contributors, people said, “you look so well”—and they haven’t said that before.
Looking “so well” is a problem in itself. On more than one occasion, elderly and evidently disabled people have confronted me for my disrespect in sitting in a reserved seat on a crowded bus when I was too nauseated from my “new hope” to stand or to explain. Their reaction is understandable, and it is evident of a larger, very serious irony:
That we people with AIDS are suddenly looking so well in the national obituary column (the Centers for Disease Control having recently announced a percentage decrease in AIDS deaths) can understandably be misinterpreted by the government and the public to mean that the problems of the epidemic are diminishing. In fact, this unprecedented good news about our declining death rate means that there are more of us living with AIDS than ever. And the increasing needs of the living are not suddenly rendered problem free,
That there is new optimism means that there is new need for strategic efforts in prevention. That these sometimes efficacious treatments are so expensive financially and physically means that we, the people with access to special treatment, need more and different kinds of help than we did before.
The epidemic is not at all over. There are vast new challenges intrinsic to this little growing flame of hope. And there are people on my street corner who have not yet seen its glow. ~