Man with HIV draws support from family
to help with disease’s daily challenge
Editor’s Note: To protect the pri
vacy of the man in this story, his
name has been changed.
By Wendy Navratil
Dan had some difficult news to tell
his father via long-distance tele
phone on that day in February
1986:
He had been fired from his job. He was
gay
And he had tested positive for HIV.
“When are you going to die?”
That was his father’s first question
after hearing his son’s final revelation.
At that early stage in the virus’ study,
doctors gave people like Dan, who was
then 20 years old and a University of
Nebraska-Lincoln student, one to three
years to live.
That was seven
years — and several
f friends’ funerals — ago.
Now, ashe beginsto
close in on his 10-year
anniversary with HIV,
Dan is setting his sights
N. / on the survival record.
“I tell a lot of my
friends, ‘I’m going to live with this.’ They
say, ‘Yeah, yeah, yeah. Everybody dies.’
But there’s so many medications out right
now, that it (a cure) is right around the
corner for me.”
People can have HIV for as many as 10
years before AIDS sets in, Dan says. This
means that he may have three more
years before he develops AIDS.
After getting AIDS, if he could hold on
for as long as one of his friends, who has
had AIDS for 4 1/2 years, he says, the
possibility of a cure being discovered in
time to save his life does not seem that
remote.
But a cure is still only a possibility.
To keep getting up every morning
for the last seven years, Dan has
had to find a more immediate
coping mechanism.
He calls his approach positive reality.
“It’s looking at HIV in a positive, but
also a very real, manner,” he says. “Right
now I want to live, but right now the real
side of it is terminal. I probably, in my
seven years, have lost 30 to 35 friends —
for a while it seemed I was going to a
funeral once a month.
“The real part of HIV is I may have to
go to funerals of friends I’ve cared for
very much. But the positive side of it is
that it makes you realize that we don’t
live forever.”
The reality of being HIV-positive be
gan to creep up on Dan when, in the fall
of 1985, the gay-lesbian student group on
campus received its first pampnlets on
AIDS.
“I came home — I had had this blotch
on my shoulder — And of course, reading
some of the things in this brochure — it
hasn’t gone away, it’s purplish, it just
keeps getting bigger — and I thought,
Tou know, I should get this looked at.m
He went to a doctor on campus, who
told him he had a minor skin infection.
But after Dan told the doctor why he had
sought advice, the doctor recommended
Dan be tested.
At first, 1 kind of had doubts, because
I felt I was ... I had not made myself at
risk — not saying I’m a perfect angel, but
I never felt I was at risk.”
He went ahead with the test anyway in
November.
“I waited. I waited actually several
months before I got my HIV results back.”
Omaha, where HIV tests were proc
essed, was inundated with tests as people
in the Midwest began to learn of AIDS.
Dan’s test had to be sent to Des Moines to
be processed.
“Then, on Jan. 1,1986,1 got real sick.
They never really diagnosed it as any
thing, but it was very similar to mono, a
real severe case of mono.
“I had a friend who, when I was sick
there, he kept saying, ‘It’s going to be
AIDS, it’s going to be AIDS.’ I was start
ing to get real paranoid.”
Anoon Feb. 1, the HIV test results
confirmed Dan’s mounting fear.
“I was shocked. I was actually blown
• away — that would be a better phrase for
it. I felt, you know, the way the brochures
read, that only the real promiscuous ones
... that it was mainly an East and West
coast problem.
“I was one of the first (in Lincoln). And
at the time, there just wasn’t much here
for the epidemic. There weren’t support
groups. The gay community shoved it
underneath the rugs, and the heterosex
ual community really didn’t even recog
nize it as a problem. And so my support
structure was very limited.”
But misunderstanding of the vi
rus seemed to have no bounds.
After Dan’s boss at the ma
chine shop where he had been
working since 1983 found out that Dan
had HIV, he gave him three choices:
“They gave me the condition of either
quitting working, laying me off perma
nently, or telling everyone on the job.”
When Dan told the Nebraska Civil
Liberties Union about the incident, it
contacted the national ACLU about Dan’s
case.
“They were going to take it as a na
tional test case. They felt it was win
nable. I went through the whole process.
But my parents owned a shop in Illinois,
and I felt that if this was going to go
national, that it would really have af
fected them. I probably could nave made
enough money off the case to support
them for the rest of their life, but I felt
they had worked so hard for this place,
that I couldn’t do it.
“So we took an out-of-court settlement.”
With encouragement from his parents,
Dan moved back to Illinois to live with his
parents. Neither his parents nor his
brother and sister-in-law expressed any
ill will because of his sexual orientation
or HIV.
“But my mom and dad swept it (HIV)
under the covers for a long time. I put on
a real good image for them. I looked
healthy, but I wasn’t healthy. It was hard
for them to see it until I was getting sick.”
He had started working full-time in
his parents shop.
“But I was sick all the time — all the
time. I couldn’t fight anything off. My
parents were paying me for 60 hours a
week when I was working 20. I felt I
didn’t want to do that to them.”
And his doctor told him he couldn’t do
it to himself. At one point, his T-4 cell
levels were down to 224. When T-cell
levels fall below 200,* doctors generally
agree that AIDS has set in, although that
method of measurement has been the
subject of much debate.
Dan quit his job, and moved back
to Lincoln in June of 1990, where
he first had come in 1982 to study
sports medicine at UNL.
“My parents wanted me to stay there.
But I just can’t live in a little town. People
wonder. In fact, people wonder now, What
the heck does ne do that he can come
home every month?’
“Basically, it was all for (his parents’)
protection. And they knew I loved Lin
coln, Nebraska. My support structure’s
here.”
On his return, however, neither col
lege, which he had attended for 3 1/2
years, nor work could be a part of his life.
With his T-4 cell levels so dangerously
low, his doctor told him he snouldnt
work.
“It was really hard for me ‘cause I
consider myself a workaholic. But I was
coming home from my job, barely having
enough energy to eat, tnen I’d go right to
bed. When your blood levels get that low,
and you’re pushing yourself, you’re just
pushing yourself right into full-blown
AIDS.”
He applied for social security disabil
ity compensation.
And yet again, he found himself wait
ing for an answer. It was 16 months
before his case was accepted.
That period of waiting brought major
changes in his lifestyle.
“I wentfrommaking$l,500amonth to
nothing. You see a lot of my nice stuff
here, but it’s stuff I had before I went on
disability.
“I lost mv vehicle. I had to turn it over
to the bank ‘cause I couldn’t make the
payments on it. ... I hated losing that
thing — I cried the day it left."
Now, Dan pays for most of his grocer
ies with fooa stamps, and because his
income is below the poverty level, Medi
caid covers his medical fees.
Although he has adjusted to those
changes and sacrifices, Dan says he often
has thought about the settlement he could
have won if he had pursued his lawsuit.
“But that’s the way it has to be. It’s
made me start appreciating more the less
material things.”
For one, being on disability — what he
calls “semi-retirement” — has helped bring
L,
1 ' . ^ - ■■■
David Badders/DN
his T-4 cell levels to about double what
they were when he was working. While
he nas been to the emergency room a
couple times, he has yet to stay in a
hospital because of HIV-related problems.
Even so, he must be careful not to
push himself too hard with exer
cise, speaking engagements at
schools and for various event-,
and traveling — he goes to Illinois about
once a month.
“There’s times I haven’t listened to my
body. And I’ll get real sick. That’s the way
my body says, ‘You’ve done too much.”
At the same time, he must monitor
carefully his intake of medication.
“I’m on AZT, Nizoral for thrush (a
yeast infection of the mouth), vitamins
and some other things I’m kina of embar
rassed to mention, like stool softener. My
body just doesn’t function as well as it
used to."
Exhaustion is a nagging side effect of
the virus, he says. He needs at least 11 to
12 hours of sleep a night.
“Although sometimes I could sleep all
darn day — I mean the whole entire day
— I say, ‘I’ve got to get up and do some
thing today.”
And at his T-4 cell level, one of his days
every three months is spent at the doc
tor’s office having blood tests done.
“It’s kind of funny, ‘cause it seems like
the times when I feel the worst, I go to the
doctor and he tells me my count is really
high. And the times when I feel really
good, it’s the lowest.”
But Dan says he takes the highs and
lows in stride. Because he’s had HIV
longer than most, he’s learned to live
with the implications of the disease that
others might never confront, he says.
“I claim myself a survivor. A lot of
people get HIV, and they consider them
selves dead. I get tired of seeing those
people. A little pity’s OK, but to wallow in
it. .. . If they continue that way, they’re
doomed — if I had done that, I’d have
been dead six years ago.
“I keep a good humor. People a lot of
times will find me joking about the sub
ject. One night a friend of mine came in
and we were talking — she was really
torked at a couple of people after the
Magic Johnson interview who had come
in, and said, ‘Well, I’m getting tested
cause I used a public restroom,’ and, you
know, stuff like that. So one or two of us
from our support group got up and I said,
Yeah, yeah, I got mine on a door knob.
And another got his off a coffee cup going
through a McDonald’s drive-through_
“I keep a good humor about fife in
general,” he says. “Not to say that I don’t
take life seriously, ‘cause I don’t think I
would have made it this far if I didn’t,
also. But I keep it in perspective.”
Dan says his attitude and environ
ment are responsible for his lon
gevity.
“A lot of times, I speak about
maintaining myself physically, mentally
and spiritually — a lot less spiritually.
I’m not a biggie on religion. But I’m kind
of a health nut. I’ve always been involved
in sports. Now it’s a big part of my pro
gram. Every day I’m doing something
physical — either I go down to the ‘Y’ and
do aerobics or do a workout. Nice days I
get on my bike and ride four or five miles.
If I’m homebound, I’ll work out here.”
That physical activity, if he doesn’t
overdo it, takes care of him mentally, he
says, by helping to reduce his stress. But
his social life also is important.
“I love to dance — I really like country
music. You don’t find a lot of gay men who
like country music. But I’ve got tons of
friends. All of them know about my status
— most of them are in the same boat. We
have a real good time together.”
Dating and relationships are diffi
cult, though, he says. Trying to
find someone who will accept HIV
is a challenge. And at bars within
the gay community, speculation about
whether someone has HIV is a recurring
theme in conversations.
“Especially if you’re thin,” Dan says.
“It’s sad that they have to judge people
like that.
“A lot of people think when you have
HIV, then sex stops, period. In fact, a lot
of people think there should be a list, and
if you’re ever out picking somebody up or
meeting someone, that HIV should be
over your forehead.
“Myself, I’m still sexually active. There
is to me a risk in everything we do. And I
personally have never ever hurt anyone
or I’ve never let anyone do anything that
is possibly unsafe to me or ever jeopard
ized their life either.
“There’s times I haven’t let my HIV
status be known. If you practice safe sex,
to me, there’s not a need for that. That
See DAN on 16
