Just out., November 21, 2003, Page 18, Image 18

’ november 21,2003
18
Iii our own words
Dec. 1 marks World AIDS Day, and long-term survivors and
activists share firsthand how HIV has changed their lives
Com piled b y F loyd S k la v e r
aving HIV sucks. There’s no other way to put it.
I have known that I have had HIV for almost 20
years. And yet during that time, I have rarely spo-
ken about it because of my fears and my shame.
Then I was assigned to interview these courageous people, each
of whom has been affected by HIV/AIDS for as long as I have or
longer.
How I wish I had more space because there were so many
other people I wanted to call and stories I wanted to share— for
instance, the woman who made herself get clean and sober
when she had just one month to live because she refused to die
an addict.
HIV/AIDS is frightening, humbling and all-consuming.
And yet these extraordinary people have managed to use their
experience as an opportunity to expand their capacity to love.
Let their own words move and inspire you, and let them give
you hope and courage as they have me. But, most importantly,
let their stories he a gentle reminder of where we’ve been and
where we must never go again.
David hisen was practicing Chinese medicine
in a community health center in Boston at the
beginning of the crisis.
got involved with H IV /A ID S when it
was still H TLV3. At that point people
were com ing in and doing 1,600 m il­
ligrams of A Z T and still dying in three
m onths. We were seeing em aciated, m al­
nourished people with constant tidal fever.
Extreme low energy. N ot just the blahs
|hut| people who couldn’t even walk a
block. We were seeing a lot of advanced
[Kaposi’s sarcoma]. It wasn’t uncom m on for
K S lesions to overcom e internal organs.
A nd the symptoms were usually in groups.
A nd no one even knew what it was
because they were dying before anyone
could test them.
Eisen is director of Portland Alternative Health
Center, a ¡rrogram of Central City Concerns.
I
Tabor Pinter is a 50-year-old artist and
activist who has been diagnosed as HIV-positive
for almost 20 years.
found out I sero-converted to what was
called Gay Related Immune Deficiency in
1985, and luckily I was at the time also
just bottoming out on alcohol and drugs. I
didn’t remember lot of the 7 0s— that proves I
was there. It was a great time, but we had no
idea what was going on.
I remember watching T V and seeing
something in New York and San Francisco
about GRID. I wasn’t feeling very well. I had
stopped the dnigs and alcohol, but I still
wasn’t feeling gocxl. I had been living in
Alaska [from 1979 to 19821 and so I thought I
* was safe. I later found mit that a lot of airline
stewards were unknowingly transmitting the
virus [as they traveled around the country)
and I slept with a lot of them.
I
roimmunology— an
image class like hypno­
tism where you go into
a guided imagery and
see yourself fighting
against the H IV and
winning— but they kept
me alive. I didn’t see
any other choice. It was
mind over m atter for
just about a year with
16 to 18 T cells until
the ax 'k ta il cam e.
Porter remains an
activist today and was
recently ¡rrofiled on
KGW -TV when the Ore -
gon Health Plan tried to
eliminate coverage for
AIDS drugs.
Tom Koberstein was
executive director of C as­
cade AIDS Project from
1 986 to 1989.
f you linrk hack to
1986 when there
was one treatment
I decided that HIV was just like alcohol
[AZT], no federal
and all I could do was deal with it one day at a
money for services and
time. My first doctor was at Kaiser, and she
prevention as we know
told me that people like me were going to be a
it now, no one knew
huge burden on the medical profession and
where this was heading.
she was going to keep me comfortable hut not
It was largely a white
to ask for anything miraculous. I was livid.
gay m an’s disease and
Anger is a g(x»d motivator and so 1 got
everybody was dying. So Former Portland Mayor Bud Clark (right) joins Tom Koberstein in
involved in a lot of activism. I think that kept
the challenge was to
the 1988 “ From All Walks” fund-raiser for Cascade A ID S Project
me alive.
bring some comfort and
1 began taking classes at Project Quest. I
dignity to people for whom m edicine could
doctors who early on provided care. Bob
considered the classes woo-woo. They were
do nothing.
Lawrence, Jim Sampson, Doug Biers and Mark
classes in strong feelings, and psychoneu­
Some of the heroes of those days were the
Lovelace. Those guys along«*’ith a couple of
new people in public health saw immediately
that this was a disease that had issues that
went beyond the disease that needed to be
addressed. They were issues of confidentiality,
quarantine and how to get the word out so
that people reduced their risk. Also, how to
identify people who have the disease. Issues
like life insurance, health insurance, could
people be thrown off of their insurance,
employment discrimination.
The doctors worked with the state health
division on a task force that brought together
physicians, lawyers, insurance professionals,
church representatives, public health officials
and people with HIV to hammer out policies
around these issues. Arid Oregon really came
together early in that respect, whereas a lot of
states dissolved into factions and rivalries
between competing community-based organi­
zations and public health officials. There was
plenty of rage and give-and-take, bur Portland
really saw the wisdom of unifying around cen­
tral issues.
The huge number of volunteers from liter­
ally all walks of life who came forward always
continued to astonish me.
Tabor Porter, who found out in 1985 that he was HIV-positive, shares a moment at home
Koberstein is experiencing health difficulties
with his mother
and living on disability.
T