A diverse group of people with HIV/AIDS -- a population that is not bound by ethnicity, gender, age, geographic location or behavior -- has been largely ignored in recent years. This population is something of a "non-community." The people within it share only one characteristic: All were infected with HIV through blood products before 1985.
They are hemophiliac Americans with HIV/AIDS, and they are the forgotten ones. One member of the hemophilia community is Jack Silliman. Jack is an HIV survivor for 20 years and a 25-year-old resident of Las Cruces, N.M. who refuses to be forgotten. I recently talked with Jack by telephone.
Where did you grow up?
I grew up in the small Texas town of Ft. Stockton. If you have ever driven down Interstate 10 through Texas, you probably stopped for gas or a bite to eat there.
How old were you when you became infected with HIV?
I was six years old. I did some research into my own past and found that I received the virus in 1981. I belong to a small -- almost non-existent -- group of Americans who between the years of 1980 and 1985 received HIV-contaminated blood products to help treat the disease of hemophilia. Thousands of hemophiliacs during these years contracted HIV. Many of these were young boys. I was one of these unlucky few.
How and when were you told that you had HIV?
It was Saturday morning, and as with all children, I had only one concern: cartoons! I sat there watching my cartoons, when my mother came in crying. I had noticed that she was talking on the phone earlier and I assumed that (something) had upset her. She sat next to me and said we needed to talk. She told me that I had a disease, something I told her I wasn't concerned about, because I had hemophilia. But she said this was a new disease, one doctors were not so sure about, and that I could die some day from it.
She asked me how I felt. Of course life and death issues to a 10-year-old are the last things on his mind. I told her that I wasn't worried and a new disease didn't scare me. If I could live with one disease, why not another? She simply smiled, and hiding her tears, walked away.
When did you realize the full import of her words?
We were gathered in my high school physical education class and were being taught the evils of sex and the results of unprotected sex: the STDs. We watched the horror films and slides of syphilis, warts and other nasties.
After a few students had puked, the coach stood and said that there was one more disease that the films hadn't mentioned: HIV. The floodgate opened and the memory that I had this disease came to me. I listened with horror as the coach explained how people with AIDS and HIV would die, and how quickly and horribly it would happen.
I listened as if he (was) reading my obituary. A friend of mine, one of my best buddies must have seen some distress and quickly nudged me, "Don't worry, only gay people get AIDS. They deserve it, all they have to do is round up all of those queers and let them die, fill up the Grand Canyon with the bodies." With that single line I realized the two things that would trouble me for the rest of my life: the stigma of having AIDS and how it was and still is to this day considered a "gay" disease.
How did having HIV affect the rest of your high school years?
Having hemophilia, you realize your physical limitations. Sports and outdoor activities take a second place. After my incident at school, I became even more of an isolationist. Fearing that I would infect my friends, my girlfriend and my family -- like the coach implied -- I changed my attitude. I changed it for the worse. I became mean, abusive and non-responsive. My grades dropped, my participation in what little activities I had waned, and I stopped dating.
Did you get any emotional support?
I found little. My parents would become too emotional to discuss it. It was a taboo subject. I could not tell my friends because I did not want to be treated differently by them. The town I lived in was small, and I didn't trust the counselors at school. The doctors, though they could provide some medical information, offered little emotional support. Instead, they sent me to support groups.
What did you find there?
I just didn't fit in. I was on average much younger than others in the groups. I was only 16. The second reason was these groups were primarily made up of homosexual males, and though I had no animosity towards them, they often had some against me for being different from them. They often felt threatened. So I spent little or no time in these groups. Instead I became self-reliant. I became my own therapist.
Were you put on any medications?
It was about this time that I began to receive my first symptoms of AIDS. I developed shingles, thrush, and numerous other little colds during my senior year of high school in 1994. It was enough to concern my parents and physicians and I was placed on AZT, then the only drug available.
How did you deal with that?
There is nothing I could write to describe my displeasure at this or the side effects of the drug on my life. Simply put, I felt better off the drugs, and my senior year passed into a haze of fatigue and nausea.
What was your lowest point?
(In college) I had started drinking to drown my sorrows and I still distanced myself from becoming too attached to anyone for very long. I had no ambition to graduate. In fact I figured at that point in my life I would never make it that far; I would be dead within four years.
I ended up in the hospital with pneumonia. I got better, but not much. In my opinion the end was near, no need to hide from it. I stopped taking my medications, I continued to drink, party, and live life to the fullest. A year later I was back in the hospital, almost dead with only five of my T-cells, Larry, Curly, Moe, Joe and Bob fighting a second round of pneumonia.
What was the turning point?
I set down a list of things I wanted to complete in the short time I would have. First, I was no longer living a lie. I went to my friends and told them the secret I had hidden away to myself. To my surprise they took it well, and several of them had figured it out on their own. After doing so I realized how much of a weight my secret had on me. I felt vitalized.
Afterward, I decided to add more things to my list. I wanted to graduate, perhaps get married, write a book, and of course visit Disney World. My health began to improve. That was four years ago.
Where do you stand now?
I have recently graduated from college with a degree in elementary education with a minor in history. I have tried to become an activist for both the AIDS and hemophilia communities. I have also become a newlywed, my wife Kelly has taken the place of my mother as caretaker, never ceasing with the constant barrage of food to keep my weight up.
What's in your future?
I want to become famous (said tongue in cheek). I want to become an image. I'd like for my life to be worth something, and become another image that can be associated with HIV/AIDS. My list of things has grown. I figure the longer the list, the longer I will live. Now I have some long-term goals, and high aspirations with public offices (somewhere on the block of 1600 Pennsylvania Ave). With this interview, I have started another goal: telling my story.
How do you feel about the way hemophiliacs have been treated in regard to HIV/AIDS?
When you hear about HIV through the media, they never mention hemophilia. The Ricky Ray Relief Act, which is monetary amends for all U.S. citizens with hemophilia infected with HIV before 1985, is not currently being mentioned in the media. In my personal opinion, we're not a concern for the media or the medical profession because blood products are no longer a primary cause of HIV transmission.
Is there a cohesive community of HIV-positive hemophiliacs in the way there is a community of say, HIV-positive gay men?
In my experience, there hasn't been, partly because of growing up in rural areas. I'm pretty sure that there are in larger cities. I've been to summer camp for boys with hemophilia. Last year they had me speak to the boys at one of the camps. Also, many of the hemophiliacs who contracted HIV have either passed away or are too spread out across the U.S. I tried to start an electronic community on Yahoo, but I got no responses after three months.
What has been your greatest challenge in living with HIV?
I'd have to say dealing with the emotions of having it at such a young age -- not knowing what to do, or who to turn to. Growing up, most of the studies were done on adults; there wasn't much information on kids with HIV. I was kind of like a guinea pig.
What has been your greatest triumph?
Surviving 20 years.
Any advice for other hemophiliacs with HIV/AIDS?
I would direct this toward anyone living with HIV/AIDS: Just enjoy life. I didn't start getting sick until I started worrying about it.