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Those of us living with HIV
in big cities tend to think that it must be a glitter-free
hell for those doing it in the sticks, the boondocks and the
hinterlands. Of course, we know it’s not always so pretty
in urban centers, but out in the middle of nowhere, isolated,
with nothing but horse doctors and gun toting Republicans?
No thanks! Sprinkle some G-A-Y into the rural/HIV batter and
most sophisticated city sissies imagine a Deliverance-style
purgatory of lunatic yokels from the hills who’ve never
heard of Six Feet Under but want us there all the same…
It’s not exactly a fair
portrayal. While living in rural areas as a gay, HIV-positive
man certainly has its challenges and downsides, there are
also plenty of silver linings. Just like anywhere, really—a
complicated blend of good and bad that hopefully balances
out in your favor at the end of the day. The following profiles
reveal some of those complexities as well as the good, the
bad, and the downright lovely. The hills are alive… with
the sound of music.
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Trever Jones is 32, Caucasian,
and lives in Norfolk, Nebraska. He travels the state as a
prevention educator. He was interviewed a couple of years
ago for The Faces of AIDS—Living in the Heartland project
managed by the Chicago Department of Public Health.
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As far as he knows, Trever
is the only gay man with HIV in Norfolk. Located in the northeast
corner of Nebraska, Norfolk is a town of 30,000 with literally
a church on every corner. It is a couple of hours away by
car from the state’s two major cities, Lincoln and Omaha.
Chances are good that there are other gay men, other folks
impacted by HIV in Norfolk, but they are not known to Trever.
It’s a ‘conflict
of interest.’
“It’s very
closeted here, “ he says. “But I am very out, about
everything. I don’t hide my sexuality. I don’t come
out screaming from a mountaintop either, because in Norfolk,
people may be okay with you being gay, but they don’t
want to hear about it. So I maintain, and I act like a normal
human being. I don’t scream, flame, or anything else
out here, I stay very conservative. But I’ve had doctors
that won’t work on me because of me being gay, because
of their religious beliefs. I had a doctor say he couldn’t
work on me because basically it’s a ‘conflict of
interest.’ Being gay is wrong in his book.”
Trever needs to go to Omaha
to see his physician, who is an HIV specialist. He has looked
for a local doctor to take care of him in emergency situations,
or for when he has a simple cold or the flu, someone that
would be willing to coordinate his care with the doctor in
Omaha. However, he hasn’t had much luck. “I found
that not one of them wants to do it,” he relates. ”They
don’t want to be labeled an AIDS doctor, they don’t
want to take the time to keep up on it. A lot of the doctors
don’t want to consult with my doctor, because they want
to think they know it all. So when I am really sick, I have
to go to the emergency room and force them to take care of
me. There have been times I’ve been so sick I could not
drive two and a half hours to Omaha. On some occasions I’ve
gotten friends to drive me, but it’s very difficult.
Ya know, I’m sick now, I can’t wait a week to see
the doctor, I gotta go today or tomorrow. So I go to the emergency
room a lot. There was a period that I was being seen in the
emergency room three times a month.”
Nathaniel Bledsoe is another
Nebraskan who echoes some of Trever’s issues with access
to health care. He is 42, African American, and lives in the
Great Plains of central Nebraska in a town of 25,000 called
North Platte. He sees a doctor in Lincoln, which is three
hours away by car. Even if he is really sick, he makes the
drive, or gets his lover or a friend to drive for him. “I
wouldn’t go to the emergency room here in my town,”
he says, “I don’t feel like they could adequately
meet my needs. Plus, it’s such a small town and everyone
kind of knows everyone. The issue of my confidentiality is
really my greatest concern, more so than the expertise. I,
like most people, want my anonymity.”
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I had a doctor say
he couldn’t work on me because basically it’s
a ‘conflict of interest.’ Being gay is wrong in
his book.”
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But the long drive to see
his doc is worth it, Nathaniel feels. “He’s an infectious
disease doctor and the best in the state. We know that on
paper. I have no complaints. When I drive for three hours
to get there, he makes sure he spends an hour talking with
me. No matter what, I get an hour of his time.”
Hey city boys, when was the
last time you got an HOUR of your doc’s time?
Nathaniel and his lover of
12 years know that there are other gay men in North Platte,
“but there are only one or two who are brave enough to
stop by to visit,” he conveys. “There are a lot
more that you see and hear about, but you never actually meet
them. People are very much undercover about their sexuality.”
The two will go to Denver, which is closer than Omaha, when
they want to go out.
The lack of temptation
keeps you safe.
While they are isolated from
other gay men and “the scene”, it’s not all
bad in Nathaniel’s book. “I’ve lived in larger
cities where everything was available, you know, the bars,
the bookstores and the baths and all that, everything to satisfy
any whim. But living here, you may get that urge, but you
can’t find those avenues here. I think that’s a
good thing, it can lower your chances of getting re-infected
with HIV, because you don’t have a big opportunity to
find sexual partners. The lack of temptation keeps you safe.
Plus, it’s a more relaxed atmosphere which keeps you
at home. It’s a lot less stressful than living in the
city.”
“I like the wide
open country,” he continues, “there is a good positive
feeling being right here in the middle of the United States.
There are not many trees here, but there is lots of farmland,
ranches and cows. And there’s a constant breeze.”
Another big plus? “It’s not expensive to live here,
auto insurance is a lot cheaper and you get a lot more for
housing here than you could in a larger city.” For someone
living on a fixed disability income like Nathaniel, the ability
to make a dollar stretch further is a major benefit of living
in a small town.
“I travel a lot
for work, and there’s nothing like coming home here to
these peaceful surroundings and being able to see for 80 miles
every day,” says Bob Munk, 52, of Arroyo Seco, a small
village of 600 near Taos in Northern New Mexico, where he
lives with his partner. “There’s just nothing like
it. And I think it’s contributed to my health. The physical
logistics are the obvious challenge, like how far it is to
the doctor, and then there are the privacy issues—those
are the downsides. But the upsides are the quality of life
and the lower stress levels as compared to living in a big
city. I love living here.”
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Bob grew up and spent most
of his life in the San Francisco Bay area. He also lived in
Chicago and New York before he moved to Northern New Mexico
eleven years ago. Munk is the project coordinator of the New
Mexico AIDS InfoNet, an internet-based HIV/AIDS patient information
service. He tested positive in 1987 and has never taken any
antivirals.
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It kind of blew my stereotypes
about rural, Hispanic Catholics.
“Northern New
Mexico is kind of a bizarre place, speaking very personally.
My partner is Hispanic, and his family has really welcomed
me into the fold. Totally. It kind of blew my stereotypes
about rural Hispanic Catholics.” He laughs. “Now,
not every family is like that, some people kind of get disowned.
But we’re lucky, I get a lot of emotional support from
them. They know I work in HIV, but we’ve never really
talked about whether I have it or not, and I don’t think
it really matters. They would certainly be concerned, but
they wouldn’t discriminate against me in any way, shape
or form,” he asserts. “I’m not really out as
someone with HIV, but I’m not shy about it either. Everybody
else I know in this area is very closeted about their HIV
status. There are very few people who are willing to be out
with HIV in this part of the country.”
Because Bob did not grow
up in the area and does not have those roots that not only
connect but deter, he doesn’t experience the type of
confidentiality issues that others who are homegrown do. “Lab
tests reveal an interesting issue,” he explains. “I
get my blood work done locally in Taos, which is about a 13
mile drive, one way. But I know people who will not get their
blood work done there, because they have grown up in this
community and they have very strong concerns about confidentiality,
about someone finding out their business. So they will drive
85 miles south to Santa Fe, and sometimes even to Albuquerque,
which is 150 miles away, to get their lab work done.”
This need for privacy extends
to getting prescriptions filled. Many won’t get them
filled at the local Walmart, where the nice lady behind the
counter might ask loudly, “Now, honey, have you taken
Ritonavir before?” Many folks have insurance that allows
them to receive their prescriptions via mail order, but that
doesn’t work for everyone.
“I have had conversations
with some Native Americans, for instance,” Bob articulates,
“who don’t live where they can get a mail pickup.
They can’t get UPS, they can’t get FedEx, so if
they were to get their meds delivered the package would have
to come to the post office and be held for pick up. And then
there is that same confidentiality issue. Ya know, ‘what’s
this package you get every month that needs to be refrigerated?’
In a couple of cases, people have made arrangements with their
case managers to have their prescriptions delivered to their
offices and they go and pick them up that way.”
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The issue of my confidentiality
is really my greatest concern, more so than the expertise.
I, like most people, want my anonymity.
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And then there is the car
option once again. Many choose to drive all the way to Albuquerque
where they can be reasonably anonymous, a method with drawbacks
as well. Bob spells it out. “With a lot of insurance
policies you can’t refill the prescriptions until day
28 out of the 30, or 31, and then if you have to drive, you
have to get time off of work to drive into Albuquerque to
pick your meds up. The chances that you are actually going
to be able to do that without missing a day on your meds are
slim.” Obviously, this is not a great scenario for avoiding
resistance.
Brother, can you spare
a Sustiva?
“We have a circle
of HIV positive friends who have formed a kind of drug support
club, it’s like, ‘Oh my God, I ran out of Videx,
who do I know that’s taking it?” That happens in
cities too, but it’s pretty vital here. Ya know, brother,
can you spare a Sustiva?”
“New Mexico has
organized it’s HIV services into a sort of managed care
model, and they have one agency in each of four quadrants
of the state that coordinates all state supported HIV services,”
Bob details. “The good news is that it’s one stop
shopping, the bad news is that stop can be quite far away.
For us it’s a two hour drive, to Santa Fe.”
“I have absolutely
no complaints about my care,” he continues. We have an
excellent HIV doc and the Albuquerque area does as well. It’s
not what you would expect, I think. A key point is the relationship
with your physician. Whether or not you have an “AIDS”
doc, I think the biggest problem is if folks don’t feel
like they can be out to their doctors, and talk about everything
that is going on. If you have a good relationship with your
doc, especially if they are a non-HIV doc or a low incidence
provider, and you feel like you can work with them, and can
get referrals and consultations as needed, I think you can
cope with most things.”
Being gay pretty much doesn’t
matter.
“And finally,
one of the reasons I love living here is that being gay pretty
much doesn’t matter,” enthuses Bob. “It’s
amazing, but it doesn’t matter. I’m not saying that
there aren’t bigots or there’s no discrimination,
but it’s really sort of a non-issue here. It’s like
the opposite of being in San Francisco, where if you were
gay, there were certain political views and candidates you
were supposed to support, and events you were supposed to
show up for, and others you weren’t supposed to show
up for. There is nothing like that here. It’s like, ‘You’re
gay? So what! Should I be interested in you as a person or
not?’”
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The medical care I
get here from my doctor is even better than what I was getting
in Baltimore, and I was getting great care there.
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After growing up in Laramie,
Wyoming (population 23,000) and graduating from the university
there, Bob Hooker, 43, moved to Baltimore, Maryland in 1987
to attend culinary school. Two years later, he tested positive
for HIV. “I practiced safe sex the entire time I was
in Baltimore, it was just so obvious that HIV was rampant
there,” recalls Bob. “While I don’t have any
absolute proof,” he goes on to say, “I was probably
infected in Wyoming.”
He met his lover, Willie,
of nearly seven years at an HIV clinic there and the two became
very involved in the whole AIDS scene. They were charter members
of ACT-Up Baltimore and were hooked in to ACT-Up New York
as well. Then, in 1995, Willie died of complications due to
AIDS. Bob himself was getting very sick as well. “I was
down to 7 T-cells, I named them like children. I got CMV retinititis
and lost the vision in my left eye. Then HAART came along
in 1996, too late for Willie, but I was one of the Lazarus
boys.” He continues, “I had not intended to come
back to Wyoming to die, I wasn’t going to put my family
through that. If I was going to die, I was going to die in
Baltimore. It wasn’t until I got better that I decided
I didn’t have to live in a crack house any more, which
was what the housing project I was living in had turned into.”
And Dorothy clicked her
heels and I was back to Wyoming.
Bob returned home in 1998.
“Before I moved back,” he states, “I contacted
the HIV program and talked to the woman who was the administrator,
and then I talked to someone at the Wyoming AIDS Project.
Just kind of of getting my ducks in a row. I called up my
old family physician who I had seen for a long time since
I was little, and said, ‘Hey, this is what’s going
on, would you be willing to see me?’ And he said absolutely.
And Dorothy clicked her heels and I was back to Wyoming.”
“My doctor had
had three other patients with HIV previous to me, all of whom
had died. That was all pre-HAART days,” Bob recollects.
“He was really honest,” he continues, “he said,
‘Ya know, I’ve got limited experience with this,
and I’ll tell you the truth, if I don’t know something,
we’ll work on this together and we’ll find the answers
together.’ That was cool with me. He said he was willing
to do whatever, that if something were to come up that he
couldn’t treat on his own, that he had colleagues to
look to.”
“My care has just
been incredible, totally compassionate and professional. There
is a lot of paperwork that has to be completed and the nurses
just bend over backwards to make sure everything gets done.
They are some of my best advocates. The medical care I get
here from my doctor is even better than what I was getting
in Baltimore, and I was getting great care there. And I don’t
hesitate in saying that. It’s a real irony.” He
illustrates his point. “My doctor here is much more aggressive
about my blood work, my overall health. With my doc in Baltimore,
a lot of that time was pre-HAART, so worrying about my cholesterol
and triglycerides was not all that big of a concern in a lot
of ways. The HIV was going to kill me before a blown out artery.
My doctor out here is a total wellness kind of guy, way beyond
just looking at my T-cells and viral load. He looks at the
whole spectrum of my health care needs in a very detailed
manner.”
There is only one dot
in Albany County and that’s me.
“I think I am
the only one in Laramie with HIV right now. I know I am the
only dot for the Ryan White EPI profile. They have dots for
each county that has a Ryan White client and there is only
one dot in Albany County and that’s me,” he laughs.
So therein lies the challenge. “It’s the fact that
there is not a very big gay population here, there’s
not a real big HIV-positive population in the whole state,”
he says. In fact, there are about 150 people living with HIV/AIDS
in all of Wyoming. And it can be a little lonely. “There
are some times, ya know, I mean, I can always get on the phone,
but there is really no one I can talk to right here in town.
There’s no AIDS service organization or support group
here. I was real big with the PWA coalition in Baltimore,
so I was used to having that kind of ongoing community. And
looking back on it, in 1998 I couldn’t wait to get away
from those queens, and now I’m looking back with a little
nostalgia.”
“You have to drive
everywhere in Wyoming,” Bob says, sounding exactly like
the guys in Nebraska and New Mexico. “It’s just
part of what it is. A lot of people who are positive here
have some history here, there are a few who are new move-ins.
But a large number of us are homing pigeons, so we’re
able to deal with having to drive hours for services or whatever.
And if you want to get laid or hook up with other positive
people, you just know that you have to drive four hours.”
“I love this little
town,” he asserts. “It’s great place to live,
it’s the Sodom and Gomorrah of Wyoming, even though that’s
spelled with small letters all the way around. But it’s
a really neat community, it’s a wonderful town, and it’s
been a great blessing to move back here and be able to live
openly and freely and enjoy my friends and family and stuff
like that.”
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