Who Moved my Cheeks?
by Jeff Berry
Change.
Change is good.
Change is inevitable.
Everything changes...nothing
stays the same.
Change is sometimes painful.
Change is definitely something
I have experienced a lot of over the last 11 years. When I
was first diagnosed with HIV in 1989, AZT monotherapy was
my best option. That would now be considered substandard care,
but at the time it gave me hope. I had by then lost dozens
of friends, and would continue to lose more in the years to
come. I can remember specifically one beautiful, warm, summer
evening in 1989, sitting on the rooftop of the apartment I
lived in at the time, gazing up at the stars and thinking
how lucky I was not to have “caught it.î Thanking God, and
wondering why I had been spared.
I was in for a big change.
In September I went
in to my doctor for a routine checkup, and he suggested I
get an HIV test. I had never had one before, but I figured
it would be a good idea. I was at the time in a monogamous
relationship, but that had not always been the case. I wasn’t
showing any symptoms, but decided to err on the side of caution,
and got tested.
A week later, I went alone
to get the results. It was a warm, sunny day of autumn. My
doctor, while a very good doctor, didn’t have a lot of experience
with HIV patients. It was obviously difficult for him to tell
me I had a potentially life-threatening illness, and after
giving me my results, referred me to the HIV clinic at Northwestern
Memorial Hospital in Chicago. I mumbled thank-you, numbly
walked out of the office and made my way home. Everything
looked different, and nothing would ever look the same again.
Anyone who’s been there knows what I’m talking about.
When I got home I plopped
myself down in the chair and cried and cried, until I couldn’t
cry any more. Actually I wailed. Sobbed. Felt sorry for myself.
Why me? So much for being spared. And later that evening,
I had to tell my lover over the phone, while he was at work
(I’m not a good liar, although I sometimes wish I was) that
I was positive. I’ll always remember the look in his eyes
when he came home from work that evening, and the words “I’ll
always be there for youî and how much they meant to me.
You have to remember, back
in 1989 there wasn’t a lot of hope for those of us diagnosed
with HIV. There was some hope, certainly more than our brothers
and sisters had in the early and mid 80’s, but it was way
before the time of protease inhibitors. I remember thinking
to myself, I had to make it to the year 2000, because I had
always wondered since childhood what my life would be like
in the 21st century. So that was my goal. And I made it.
But I’ve changed.
And so have the treatments
for HIV. When I joined TPAN as a member in 1990, there still
weren’t a lot of options. AZT, ddI, and ddC were the “alphabetî
drugs. Many of the other drugs at the time were those used
to treat or prevent opportunistic infections such as KS, CMV
or PCP. Today there are so many more options and drug therapies
to help battle this virus. I probably would not still be here
if it weren’t for combination therapy and protease inhibitors.
By my own calculations, at the time I tested positive, I had
to have already been positive for at least 2 years, probably
longer. My T-cells were at 500 when I started AZT, but they
gradually dropped over the years, once dipping below 200.
(Oh my God—I have AIDS!) Protease inhibitors changed all of
that, and for several years my viral load was undetectable,
my T-cells up to 800. I actually looked and felt better than
I had my entire life. I began taking better care of myself,
working out, working on my inner-self, watching my diet.
But I’ve changed.
My numbers are still
pretty good, T-cells at 800, percentage at 28, and viral load,
while not undetectable (it usually isn’t on the second protease)
is still relatively low at 2900. I still look and feel great,
but lipodystrophy has started to take its toll. No paunch,
no hump, just lots of veiny arms and legs and that hollowed
out look in the face. But I could deal with all of that. The
veins were eyed enviously by body builders at the gym, and
the high cheekbones gave me that gaunt look that was sought
after by Calvin Klein and the rest of Madison Avenue.
But the naso-labial folds
that I’ve started to get around my mouth just make me look
old. And I’ve always been told I look younger than I am. Now
I’m starting to look my age. So, what, in two years when I’m
44, will I look 60? I never anticipated having to deal with
looking sick, especially when I don’t feel sick. But it really
fucks with your head, and for the first time in my life I’m
considering plastic surgery. Go figure.
So is this where I thought
I would be in the year 2000? No, but I’m glad to be here.
Working at TPAN these last eight years has been the most wonderful,
fulfilling, scary, chaotic time of my life, and I wouldn’t
change it for a thing. I’ve helped to get information about
HIV into the hands of those who need it most. People like
me who are living with this disease, individuals who are incarcerated
and denied treatment, those living in rural areas who have
to teach their doctors about HIV, people in Africa who can’t
afford a subscription to the magazine because it’s equal to
one month’s wages. Real people. Not prisoners, not patients,
not clients, but people. I want to help give other people
the hope that I’ve been given.
Because some things never
change.
Jeff Berry has served
as Positively Aware distribution manager and editorial
assistant since 1992.
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