One is still too many
by HeyRay
Contributor
Blog: The Shape of X
During the summer after my freshman year of college, a tabloid’s headline caught my attention: “Florida Woman Catches AIDS From Dentist.” I was living in Florida, so I paged through the paper, hoping it wasn’t MY dentist. I immediately noticed the woman’s last name was familiar to me; looking at her picture, so was her face. I realized in disbelief that I knew her sister. Kimberly Bergalis was 22 years old in 1990 when she was diagnosed with AIDS after contracting the virus during a molar extraction two years earlier. Her dentist had already been diagnosed when he performed the procedure, though he did not inform his patients of this until much later.
Kimberly’s story quickly made national headlines. She became an activist for HIV legislation. Even in a near-debilitated state she testified before Congress in support of a bill mandating HIV tests for healthcare workers. Less than two years after her diagnosis, Kimberly Bergalis died.
Kimberly’s sister, Allison, and I had been involved in a community group together during our junior year of high school. I remember meeting Kimberly once. After the group disbanded, Allison and I lost touch so I never contacted her throughout her family’s ordeal. This was before Facebook and email, and even though we only lived a town apart, our friendship faded when the group ended. But I saw her and her parents on TV talk shows periodically after Kimberly died, and I still felt a connection.
Strangely--and thankfully--Kimberly is the closest I’ve ever come to knowing someone with HIV, and I wonder how unusual my experience is. During the first few years of the AIDS crisis we were led to believe that it was the next plague and that mass populations would be wiped out. The lack of understanding surrounding HIV meant no one could even predict how many would be affected by it. Falling in line with this fear, it seemed people from every walk of life were dying faster and more drastically every month from AIDS. Gay actors, families with hemophiliac children, famous athletes who’d received blood during surgery, all of them were dying, and very publicly so. Images of skeletal patients covered in sores were common on the news and in magazines. The plague was upon us.
As a young teenager, I fully expected to be touched by the pandemic. I just assumed that classmates would fall ill from it, or teachers would, or classmates’ parents, or someone from my church, or a community leader. But now, 29 years after AIDS was first recognized, amazingly I have only met one person who had it, and I am sincerely surprised. For all the new stories I’ve watched, school assemblies I’ve attended, pamphlets I’ve read, and support rallies I’ve witnessed, I’ve been surprisingly personally unaffected by HIV/AIDS.
2008 statistics from UNAIDS, the Joint United Nations Programme on HIV/AIDS, estimated that 33 million people worldwide are living with HIV, with 1.4 million of those in North America. Over 25 million more have died from it since 1981. So how did I get so lucky?
I’ve spent the majority of my years living in Florida, and this life brings with it annual warnings of hurricanes. When the Big Storm is impending, you prepare for the worst and hope for the best. You physically feel the winds of change blowing in and you try to keep calm. You take all the precautions you can, but know that a higher power still holds your fate. Sometimes entire towns are devastated overnight. Other times, those who are seemingly in the direct line of being hit are miraculously spared. There is a sense of relief, but the danger never really leaves.
This is how the AIDS crisis has teased me. Like a coastal dweller in late summer, I expected an onslaught of devastation. But I have yet to be hit by the storm. I am thankful for my good fortune and for the good fortune of everyone I know. But the danger still looms. The fear of it hitting my loved ones is still there.
It’s getting harder to remember when we didn’t have to respect that fear.
8 comments:
I would not classify myself as afraid of AIDS.
I have been married 24 years now. When I was overly sexually active 1978-1985 AIDS was not even an issue yet. VD, and the dreaded Herpes were. Both of which I have been fortunate enough to avoid.
The biggest fear was getting a girl pregnant. Being Young, Dumb and full of .... I did not worry about that much either. Again I got lucky.
So, to say I am afraid of HIV/AIDS would be a stretch.I worry about it for others yes, myself not so much.
It is a hideous disease, one I would not wish upon anyone. However, the likely hood of contracting it myself is ultra slim.
But afraid, I can not be afraid of medical maladies much anymore. Having survived Caner, Coma, Drug Addiction and many Surgeries.
Not that I feel I am immune or superior, just that with all I have managed to overcome. I feel that I am strong and healthy once more and I believe I can handle whatever else can be thrown at me.
I would not say I do not fear death. But, I am less afraid of it now than I once was.
HeyRay - You've given me a lot to think about today. This post reminded me of five spokespersons who made a significant impact on AIDS legislation, and increased public understanding of the disease during a time of heightened fear and misinformation. All five of these people suffered untold ridicule and/or villainization, and all five were young and innocent Gen Xers. Unfortunate heroes.
Kimberly Bergalis (1968-1991)
Ryan White (1971-1990)
Ricky Ray (1977-1992)
Robert Ray (1978-2000)
Randy Ray (born in 1979, Randy is still living)
The Ray brothers are some of those suffering from hemophilia that were so affected. Their home was burned down in 1987 following a court decision that allowed the boys to attend public school.
Also, I had a hunch and was right -this year marks the 20th anniversary of the death of Ryan White, the 11-year-old boy from Indiana who was expelled from middle school because of his infection. It also marks the 20th anniversary of the Ryan White Care Act, the largest federally funded program for people living with HIV/AIDS.
Thanks for a post that really made me think and reflect.
It wasn't--and isn't--contracting HIV myself that is my fear, it was and still is the fear of facing a loved one who has contracted it, and seeing them deteriorate and die so tragically.
I grew up watching horrific news reports about this disease starting at age 10. I clearly remember the stories of the Ray family's house being torched because these poor boys were sick. My child mind thought that such happenings were sure to hit my small hometown, too. I was the same age as Ryan White, and I wondered which of MY classmates might be "our" Ryan. It was hitting every demographic and every corner of America, and it wasn't sparing anyone. I dreaded how and when it would touch my home.
I have a friend with HIV. He told me in the hall at church about five years ago. It was surreal. He is being treated and lives what appears to be a healthy life to me. He contracted it from unprotected sex. It is still a risk. The treatment protocols are better and he is living a healthy life - many years after his diagnosis.
HIV doesn't scare me. It never did. It saddens me.
I can definitely remember being very afraid of HIV/AIDS, especially in college. It replaced my adolescent fear of nuclear war. Is it just me or does it seem like our generation was plagued with fears, one after the other. Maybe that's true for other/all generations in some way, shape, or form.
I can remember getting an HIV test and what it was like waiting for the results, and then getting to the clinic only find out that my results hadn't come in yet and so waiting even longer... And then finally getting the results, which were negative thank goodness.
"The HIV test. A right of passage for our generation."
-- Reality Bites
I wouldn't say I fear HIV/AIDS anymore, but it's always there in the back of my mind. I've never known anyone who had it.
Wasn't HIV/AIDS more widely understood after Magic Johnson contracted it?
I need to think about this and reread it but at first glance I am not sure I like this article. The author assumes that because she has not met/or knows people that have all the old tell-tale symptoms of HIV/AIDS that "thankfully — Kimberly is the closest she's come to knowing someone with HIV".
I can promise her that she is wrong and this article advances this idea that on some level — the scourge is over, or even worse, there is the slight insinuation that the people she interacts with in her everyday life are beyond the moral pale of being at risk for HIV. The plague not over — it is better managed. And it is only by the grace of the thousands of people that work hard to make certain that medicines and care and treatment are available and affordable to the average working Joe - that those teachers, classmates, classmate's parents, church members, and community leaders of her community can now live quiet lives outside the shame created by the expected "skeletal patients covered in sores" stereotypes. But they are out there - and she meets them everyday and on some level it's a bit dangerous that she believes otherwise. The stats prove she does and the advances in medicine make it possible that she may never know exactly who. Perhaps she is not as lucky as she thinks. The believing otherwise sends a chill right down my spine.
@TR - Nobody even talks about AIDS in America anymore. And upon reflection, I have actually known five or six people who have died of AIDS. Thank you for your wise and informed comment. My hat is off to HeyRay for even broaching this subject and I know she will accept what you have said very well. We have all fallen too silent and through discourse we can discover new information and new perspectives that will hopefully help us support policies that help heal ourselves - our world - people we love and people we need to love more. You are such an important voice TR. People really pay attention to what you say. You are such a gift to Oklahoma. I mean it.
@HEYRAY - Honestly, if you hadn't written this post, the 20th anniversary of Ryan's death and the law that provides medicine to people with HIV/AIDS would have escaped me.
The observation I intended to make with the piece was that my EXPECTED experience--originating as a child/early teen in the beginning of the crisis--was vastly different than my reality has since been.
I took every AIDS-related news report from the early 1980s as a sign that "doomsday is here." I was just a kid, I couldn't fully process everything I heard or saw. The sterotypes I mentioned were what I, as a kid of the times, knew of HIV/AIDS, and they are what I expected--as a kid--to deal with as I got older.
I never insinuated or implied that my circle of friends and family was morally above being affected by HIV. Morals never entered my vocabulary. There's no rhyme or reason why I've never known anyone personally with the disease...and that was really the point of the piece. I expected a particular experience, but it did not turn out as expected.
Again, I am grateful that I have not had to experience it firsthand, but in no way do I think that the crisis has disappeared.
Post a Comment
Thank you for sharing your thoughts and ideas.