HIV-Positive Poet Not Hiding from Past Now
By Amy Halloran
Jack Wiler works in pest control in New York City, lives
in New Jersey, and reads poetry in all kinds of places. He reads his work at
high schools, festivals and conferences, and in bars, the site of poetry’s
late 20th-century revival, when open mic nights, spoken word and
slam poetry breathed new life into the form.
Wiler’s poetry is conversational and frank, yet he
chose not to address a significant part of his life in his writing for a long
time. We spoke about this choice and other facets of his experience by phone in
early April.
Q: I read that your latest book covers formerly
verboten ground, the topic of HIV. Can you talk about why you didn’t write
about that part of your life?
A: I’ve been bisexual my whole life, but I had
a relationship that fell apart, and me and cocaine entered a long friendship. I
started going to gay clubs and having unprotected sex. It was kind of like a
death wish, really. I knew what I was doing, and I knew that it was stupid.
I’m not a dumb person. I was ashamed to talk about that, and I think that
the one element of HIV as opposed to a disability that is just handed to you is
that you’re ashamed that you did things that caused you to be this way.
Maybe somebody (who) is blind may think he’s being punished in some way
for something that he did. I don’t know too much about that. But if you
knew that you could get this disease, and you did it – people are already
feeling shamed because they’re gay, and you add on top of that you’re
an idiot and you’re not paying attention to your health, the level of
shame is enormous, and so, no, I didn’t write about it. I alluded to it a
little bit but not much. When I got better I decided I would never do that
again. I’m a human being -- you lie to yourself all the time, but I try
not to. I try to be honest and clear about things.
Q: How does your health status play into your
everyday life?
A: When I first got sick, after I got out of the
hospital, I was deeply damaged. I weighed like 70 pounds. I had PCP pneumonia
-- this is fall 2001. My hometown is very small town, in southern New Jersey,
near Philadelphia. It’s very beautiful: all Victorian homes, grass, all
that crap. So I thought it would be pleasant to go back there, but after three
months it was hell because it was really dull. So I resolved that I wanted to
go back to work as soon as I could, if I could go back to work, because you
know that was up in the air because of AIDS. I kind of went one step at a time.
I went to volunteer at the AIDS service agency where I was being assisted and
got part-time work there, and that expanded a little bit more, to the point
where they probably would have offered me a full-time job, but it wouldn’t
have paid the kind of money I thought I was capable of making, and also at that
point I needed to be out in the real world. I felt I brought all I could to the
table at the AIDS service agency. In order to do more, I’d have to take on
a role that I was uncomfortable with. I’m not a good case manager.
It’s not a skill set I possess.
An opportunity came up in November of 2003 for me to
assist my old company, Acme Exterminating, and I went to work on that, and they
hired me full time in January 2004. When I went back to Acme, I saw that they
did need somebody with my skill set in order to save the company and keep
everybody working. And at the same time it would give me the satisfaction of
doing a job that mattered to me, so I thought it was a good match, and
it’s turned out to be, and for the most part it’s been a good
decision. While my credit is not tremendous, I have stuff I didn’t have 10
years ago. I have a new car and dogs and a nice apartment, and the people at
work have jobs they can depend on, and the company is starting to grow, so I
think that it was good for both of us. If it was up to me, I’d like to
stay there till I’m 70 years old. Hopefully, I get to be 70 years old. I
can’t depend on my Social Security. You don’t want to have to live on
SSD (Social Security Disability Insurance). It’s not much money.
Q: Your poems, the few that I’ve read, are very
matter-of-fact, almost conversational. Do you think of writing as part of a
conversation with an audience?
A: That’s my theory of what poetry is. It
starts as a conversation between the poet and himself. He’s talking to
himself, and then you give the poem to someone either in performance or on a
sheet of paper, and that conversation can expand from groups of people.
It’s a conversation that doesn’t have an ending. I don’t think
the single poem is a conversation. The group of poems, the mass of poems, is
the conversation.
Q: How did you get into writing?
A: When I was a senior in high school I was geek
but a nascent hippie, so I decided to write poetry to get girls. It didn’t
work. I took a few creative writing courses in college, and later, a friend I
knew from school who thought my writing was good came to me and asked if I was
writing. I said no, I didn’t have time. He said, ‘You always have
time to write. You should go to a writers group with me.’ That writing
group didn’t work out, but my girlfriend at the time was a beginning
writer, and we went to another writing group with free wine and cheese, and as
it happened four of the people in the group were professors in creative
writing. Through that group I essentially got an MFA in poetry, and I learned
how to edit my work and how to hear my work. This same guy also introduced me
to the beginnings of slam poetry. He said, ‘Do you want to go to a poetry
reading at the Nuyorcian cafe? You get up on the stage and read your poems and
drink at the bar.’ I said, ‘OK.’ I read out there, and I got a
standing ovation, and I said, ‘I’m doing this the rest of my
life.’
Q: Tell me about your life as an exterminator.
A: In terms of what are the issues of working at my
job, how does HIV/AIDS impact me, on a really simple level your energy levels
aren’t what everybody else’s are. Second of all, just like I guess
diabetics, I have a number of ancillary problems that raise their heads during
the course of the day. I have neuropathies in my feet and my lower legs. As a
consequence, I experience odd moments of pain throughout the day. There’s
medicine for it, but it seems kind of dumb to take a pill just to make the
bottom of your feet feel good. I’m taking enough medication already.
I’ve been upfront from the beginning with my employer
and the people I work with about my status. Everybody I work with knows
I’m HIV-positive. That was a conscious decision. I decided that one reason
I’d become ill was because I’d denied my status, and had I
acknowledged it I might have sought medical care earlier, and I never would
have developed PCP pneumonia. I made a series of stupid decisions, and when you
bundle them together with denial, you have a recipe for disaster. I was cooking
up a storm.
I do my job just fine. I have lapses of memory. Some are
just because I’m getting older, but I don’t think a man of 52 should
have to (be organized when) taking a shower so he doesn’t forget to
shampoo. I think I have memory issues as a result of the severe weight loss. I
could be wrong about that -- there’s no medical data to support that --
but I’m going to say that what I think I felt is true.
Q: How do you feel about HIV as a disability?
A: It’s a disability, but it’s an odd
disability. It’s a disability mostly in your head. I take some pills, I go
to work and I come home. Sometimes bad things happen. You go to the bathroom in
your pants on the subway train, but that doesn’t happen that much, and for
the most part, you can plan for (it). You can lay out where all the pit stops
are throughout your day.
In this country, AIDS is probably the one disease that
manages to merge both sexual shame and the shame of the disease with social
punishment. There’s a consequence to not being honest with yourself, and
the consequence is you become ill and you could die. It’s true that
everybody’s going to die, but you could die much sooner than you normally
would have. People do look down on you if you’re blind or in a wheelchair,
and they think you’re not able. You’re not looking at the real person
and talking to the real person. Some people respond to (this and their)
disabilities by becoming not able. Some people say, ‘I want to be the guy
who sits in the house and never goes out.’ Other people don’t. I
don’t think it makes you a hero to say that you don’t want to sit in
the house and that you do want to confront the world.
Q: What a great thought.
A: To me, I think more people would want to
confront the world if there were (fewer) barriers. When I was first diagnosed I
thought I couldn’t get medication because I didn’t have health care,
but it turns out that in New Jersey, if you make less than $47,000 you can get
health care. But the state never says you can get the medication. They
don’t say that out front. They’re not really providing all the
information they should to empower people to protect themselves and save their
lives ‘cause they don’t want to say they condone this kind of
behavior. Why couldn’t the health care worker who came to tell me I was
HIV-positive (in the hospital) tell me, ‘You should go to this clinic, and
you can get the medications and you can prevent your being sicker’?
Instead she just said, ‘You’re HIV-positive,’ and pretty much,
‘Have a nice day.’
Is it a sin if you drink bad water in Mexico and get
dysentery? Because you didn’t listen to somebody when they said don’t
drink the water? That seems crazy. On the other hand, getting very sick made me
religious, so I can’t really bitch too much.
Everybody in some way is disabled in a weird way, just
like everybody’s sick every day. Your body is constantly being attacked by
germs and viruses, and your immune system repels them. There are things that
make you disabled in ways you would never think of, and yet we go through our
days. I think we look at people with obvious disabilities and think they are
less able to cope than others, but I think, in fact, that many people with
disabilities are more able to cope because they have to work harder at doing
everyday things. They’re not better people necessarily. A lot of the
people with AIDS that I worked with were not particularly nice, but they found
ways to be in the world, (and) one thing a lot of them did have, and that I
hope I still have, is compassion.
“The Poem Where I Say Thank You” came from a
woman who worked at the office. She had two kids. She had really severe
neuropathy, she could barely walk, and I was complaining that we were being
paid slave wages, and she said, ‘You know, Jack, you’re full of it;
you would do this work for free.’ And she was absolutely right. That
springs directly from that experience. It’s my favorite poem.
(Wiler’s poems can be found on his Web site,
www.jackwiler.com.)
Amy Halloran, a writer, lives in upstate New York with
her sons and husband. |
