One person's decision to live honestly ... with HIV

Published: Thursday, December 1, 1994

Today is World AIDS Day. Today is also Day Without Art. And today is the day on which one UCLA student has chosen to tell the world for the first time about his HIV-positive status, as frightening as this process can be.

But he is not alone. As many as one out of 500 college students is HIV-positive, according to the Center for Disease Control. Because of these statistics, but more importantly, because it's easy to forget that these numbers translate into the lives of individuals, we must become more aware of AIDS and its implications.

By Sheldon Allen

I'm 22 years old and I'm graduating this spring.

About a year and a half ago, I found out that I am HIV-positive. But I didn't really start dealing with it until a couple of months later.

Until that time, I was pretty much in denial, ignoring my diagnosis, pretending everything was OK ... except when I would try to fall asleep. All I could think about then was getting sick and dying. I could not shake these visions of myself in a hospital bed, my little brother coming to visit, me wasting away with AIDS.

Things started to turn around when I started talking about my fears. The first time was when I attended a support group with about six other people who have HIV: gay guys, straight guys, straight women, yet no lesbians not in my group, although they get the disease, too. All kinds of ethnicities and ages.

In this group, I let myself break down in front of other people. I couldn't hold back anymore, and it just all came out of me.

I told them all how afraid I was ... of AIDS, of dying, of my brother and the rest of my family seeing me sick. And some of them started crying, too. They could, of course, totally relate to these feelings I was having, because they'd all felt them themselves.

The group facilitator let me bawl as much as I needed this is something I believe everybody has to do, sooner or later and then she gave me the ultimate ultimatum by telling me, "You are going to have to make a decision. Are you going to live, or are you going to die?"

Somehow, I understood what she meant immediately. Up until this point, I was only seeing myself as sick and dying. I saw HIV as a death sentence. I figured my life was over, that everything I did I was doing in vain, even though I would pretend to everyone else that everything was OK.

But then she said this, and I didn't have to think about it. I knew what I wanted to do. And from that point on, I have been challenging the media-hyped notion that HIV=AIDS=DEATH.

The facts are these: Most people with HIV have died of AIDS. Some people do not die: They've been infected since the epidemic began, but they do not show any symptoms. Many people with HIV live happy and productive lives for however long, full of love and strength.

I belong to the latter group.

When I first told my friends, I could see it in their eyes and sometimes they even say it: When they look at me, they see me dying right in front of them. It takes time to convince them to let that kind of thinking go. I need their support and their positivity, not their pity.

That's the main reason I haven't been more open about my infection with people.

I don't want to bother with their tears, whether they show them to me or not. I listen to their fears, though they need to be heard, too and this can be very draining for me sometimes.

This is also the reason that nobody in my family knows I have HIV: I don't want to deal with their visions of me dying, let alone to deal with their disappointment in me for contracting the disease.

I get all the support I need now.

My closest friends know, and they know how to support me. They listen when I do get afraid, and they don't patronize me with "Don't worry. Everything will be OK." Nor do they look at me with those "you are dying" eyes. We are honest about the possibility that I will get sick with one opportunistic infection or another, and we talk about that. But we don't obsess about it. We concentrate on living. Especially my best friend; she too has gained a new appreciation for life.

She also knows my philosophy about my status: I do what I can do, I take advantage of the different treatments that are available, I eat well (and a lot), I get enough sleep and plenty of exercise. I do all this, and then I go on with the rest of my life.

I do what I can, and then let go.

That I can do all these things in the way of caring for myself is a real privilege. I think to myself that of all the HIV-positive people in the world, I must be one of the luckiest. I am a 22-year-old white male in southern California studying at UCLA with good friends.

So many people with HIV live in parts of the world or parts of the country that do not have access to the kinds of things that I do that would enhance their lives. I think about how Africa is being devastated by this disease, and how Asia is next. Many of the people in many of the countries in these parts of the world hardly have a chance: They have neither the education nor the means to defend themselves against the virus, whether they are infected yet or not.

The situation definitely feels overwhelming, if not hopeless, but that attitude won't get us anywhere. There is much work to be done, for everyone.

First, don't get infected. If you do, start taking care of yourself.

Second, know that this disease is happening right now to people you love and to people you don't know. Let these people know that you are not one of those AIDS-phobic bigots, rather that you care about what is happening.

One way to show you care is by becoming part of the solution.

Many AIDS service organizations can use your help, and for some of them you can just drop in for a few hours, like Project Angel Food, which prepares and then delivers warm meals to people who cannot cook for themselves.

Of course, AIDS isn't the only factor hurting people today all kinds of service organizations depend on volunteers.

Just get involved and be sensitive.

Sheldon Allen is a senior English student. In honor of World AIDS Day, he will speak today at noon at the Student AIDS vigil in Schoenberg Quad.