Searchlight Vol. 3, no. 1

Targeting Health and Knowledge
Sustains Long Term Survivor

This is the fourth in a series on long term survivors ofAIDS.
The writer prefers to remain anonymous.
Despite the fact that I have had no opportunistic infections, virtually no symptoms and, for almost three years, less than 10 T cells, I have never thought of
myself as a long term survivor. But in these past several years, maintaining a full
schedule, working and enjoying my life on all counts, I have come to feel like a
member of a very small minority-the minority of HIV infected people with
extremely low numbers who are not only managing to stay healthy, but who are
thriving. In fact just the other day, one of my dearest friends, one of SEARCH
Alliance's finest doctors, remarked with a mixture of amazement and joy that my
general health has not deteriorated. It has, if anything, improved.
This is no happy accident. My health has been the primary focus of my life ever
since I first found out I was HIV positive on April 1, 1987 (a date that, somehow,
I just can't seem to forget). I have made, as we all must make, tremendous psychological adjustments dealing with HIV. I have learned
how to manage what I'm told is a relatively late stage of HIV "The sim
infection with a great deal of success. I've put,
I say all this not to brag or to impress people, but to let oth- regimen
ers in a similar situation know that you don't have to lie
down and let AIDS win. I passionately believe that, unless aggreSSiv
you have high numbers and enjoy good health, following the both the
standard Food and Drug Administration-approved regimen and the ml
for dealing with this illness will assure that you are going to
get good and sick. But I also know that there are tools- this vir
therapies and underground drugs made available by brave, if an
aggressive medical professionals-that, if gotten hold off
early enough, can buy us a great deal of quality time. iS myn

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sive in gaining both the knowledge and the means to fight this virus-this, if
anything, is my "secret."
And if I can do it, there is no reason why other people can't do the same thing.
Of course, common sense dictates that we all take good care of ourselves, that
we eat right, get plenty of sleep and exercise and not abuse our bodies. I do
know that I can't take advantage of myself like I used to. Too much chocolate,
and-wham-I feel wobbly. A few drinks one night usually guarantees exhaustion for me the next day. But moderation in these departments is a pretty
insignificant price to pay in the quest for health. It gives me strength and
fortitude to pursue the latest-breaking developments in anti-HIV treatments.
And zealous enthusiasm in finding new, promising therapies is where it's at. I
get tremendous help from publications like AIDS Treatment News and the
New York Gay Men's Health Crisis newsletter Treatment Issues, as well as
telephone services like the Project Inform Hotline. These
lefact that resources, as well as organizations like SEARCH Alliance,
provide all kinds of information. They're up on many
yself on a promising therapies. Call them. Ask for help. Don't be
that I am shy. If you have a specific problem or illness, ask if any
of these organizations knows of a drug trial or a medicain gaining tion that might benefit you. And be nice to these people.
Knowledge I have found that by developing telephone relationships
with people, I have been able to obtain a lot of priceless
ans to fight extra information. So much information, that I
is-this, overwhelm my doctors.
'thing, That's another thing. I have several doctors and I glean
ecret'. " valuable, different information from each of them. I
frequently tell my doctors what I want and each, in his
own way, helps me a lot. One is my "expert" in prophylaxis. Another, I believe
to be a bull's-eye diagnostician. Another provides me with access to difficult-toobtain therapies. But most important, I have learned to be my own doctor. I do
the research. I tell my doctors what I want. And I'm not bashful about it. When
I back up my requests with good, solid evidence that what I want works-and if
my doctors can provide me with the medication-I get it.
The most valuable piece of information I have learned is that each of us can
make the difference in our health. True, we don't have a cure yet, but there are
tools available that can make the difference between sickness and health, life
and death. Because of the crippling slowness of the FDA and drug companies in
getting promising therapies out to people, we have to rely on sources outside the
mainstream for both knowledge and supplies. But the benefits that could well
be derived from these tools-good health, longer life-just might make it possible for us to take advantage of the cure for this disease when it comes. That's
something I intend to stick around for. If we work hard toward that goal and
make the "long term survivor" minority into the vast and healthy majority, you
wait and see-a lot of us are going to make it.

v
And I firmly believe that we can all make a positive difference in our health if we
educate ourselves and fight to obtain these therapies that, to the shame of this
nation, our government has thus far been too lazy and/or skittish to sanction.
As far as I can tell, there is nothing unique about my physiological makeup--
nothing physically different about me that enables me to stay well. And I'm not
going to pretend that my life is the perfect picture of glowing health. I have my
share of down times-when I'm tired or dealing with an occasional bout of
diarrhea or the very mild neuropathy in my toes that is a side effect of the ddl
and ddC that I take. But my "up" times are by far the majority. I feel great most
of the time. And when you're feeling well, it's very easy to maintain an optimistic
attitude about surviving this disease.
But I work hard to feel great. I search out every bit of knowledge I can find with
regard to new treatments, new antivirals. And while I seem to have stumbled
onto a self-designed program that helps me, I don't believe that I have found
"The One Regimen That Works For Everyone." There are many regimens, many
therapies. So many, that there isn't enough time to incorporate them all into
our lives. But the simple fact that I've put myself on a regimen, that I am aggres
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SEARCHLIGHT January/February,1993

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