Personal stories about HIV/AIDS

December 1, 2002 12:37 PM

Among the plethora of online resources, there exist many personal stories of how the disease has touched the lives of online authors. I'm listing the ones I've found today (by all means post others you find as a comment here).
- Ultrasparky thinks about it twice a day
- Mermaniac remembers Ronnie
- PozBoy's story of getting tested
- Q's story from the hospital
- Piggyhawk's scare
- Thinkdkink's jr high assembly
- The Fray remembers Robert
posted by mathowie (9 comments total)

I apologize for the spelling and grammar, this is a very personal account of things that happened to me. I have never bothered to clean it up, i wrote it for mostly therapeutic reasons, hope someone finds something interesting in it other than a voyeuristic sense of pleasure.

I have started and restarted this book, this definition of me several times now. Each time I have gotten to caught up in seeming witty, or clever. Instead I will attempt to let my story talk for me. I will not blast you with my views. Merely allow you to see why I came to them.

I was born in Greenville, South Carolina, to middle class parents with good educations. My story is very much the story of thousands of kids across america in the eigthies. Most of my young life was fairly uneventful. I did well in school when i tried. I learned both multiplication and division in kindergarden. My father and I used to stay up late reading books together. By far the major contributing factor to my younger years was going to school at a montessori school.

If you are reading this then you either know me and i have persuaded you to validate my life, or worse yet you have purchased this in, which case i must sell my life to you. If i am even remotely succesful in either of these attempts i implore you to send your kids to a montessori school. It provided me with a firm foundation in self-education, which i still find usefull even today.

All of this changed for me in third grade. I was eigth, and it was october. My father started to get sick. I remember it, as a mass of confusion. A fear not said but ever lurking. I was young but i could read the writting on the wall, and then he flew to new york to get testing around the begining of november. My mom joined him and they came back home several days before christmas. The whole family was as our house, and i sat in the den watching my family members file into a room to talk to my dad, one by one. One by one they left crying or in a state of visible pain.

No one would tell me, they respected his wish, finally it was my turn and i walked in and sat down. The exact words of that conversation are forgotten to me, but i was told by my father that he had leukemia. He claimed that he would be sick for a while during the chemotherapy treatment. I should mention that i had read several news articles on the subject and knew a fair amount about cancer, for an 8 year old boy. Frankly i knew it was some bad shit.

To add to this we were going to be moving, but as a condolence i got a dog. I had always wanted one. It was a small dog though, because a year or so before i had been mauled by a dalmation. 37 stiches, most in the face, the bastard tore off a chunk off my ear. As my father caried me away from my friends house i remember seeing the dog over my fathers shoulder sitting, wagging its tail.

When school started back in january i told everyone there of my fathers heroic struggle against cancer. I wanted a warm carring reception, i only had 10 class mates i got it. then god threw me the fast ball. I came home one day and my father took me to a park, Bolling Springs in fact, nice place has a nature trail. We sat down at a picnic table and started to talk.

It was the most maturing conversation i have ever had. In contrast with the one at our house before christmas, i remember it all. Each piercing word the tension in the air and the sureal beauty of a carolina day with such a serious topic. Briefly he didn't have cancer, he had AIDS. Furthermore he contracted it through adultry. Then for the finale it was with a man, that had once cut my sisters hair, as well as he could remember... because it could have been several people, he wasn't real sure on the details.

Odly, my reaction was anger with myself. I didn't understand how i had missed the fact that he still had hair after the chemo. My next reaction was to want to go play. It was clearly awkward for my dad, but i will say one thing about that conversation. There isn't a lot you can say to surprise me anymore, i'm ready for just about anything.

That day changed me. It was the begining of a new way of life, and the end of my inocense. I'm not sure how it is for other people, but for me my childhood was wrenched from me bit by painful bit with each realization making me see how harsh the world could be. I went back to school the next day, my parents were concerned about how i was taking it. I bottled up my pain, crying never gets you antying. It happened that several months later our class was discussing std's and i once again tried to find solice in my class mates. I aproached my teacher about talking to the class about my fathers problem. She agreed that it would be good.

Later in life i would be rediculed for sharing such personal truths about myself and my family so freely. Indeed this practice has resulted in my own personal pain frequently, but i still believe that conversation has the power to heal. That we are only as good as the sum of our minds. This was such an instance when it would have been better to keep my mouth shut. I was ostracised, and then just made fun of. The one that hurt the most, "You're going to be gay like you're father."

That one still hurts, i'm not gay, but that dosn't mean i'm ashamed for my father for what he was. If anything i am sorry, sorry that he grew up in rural south carolina in the 1950's where homosexuality was so dangerous that someone just taunting me for it seemed almost civil. Still i can't be too sorry because it is clear that i am only hear because of his confusion.

That summer things took a turn for the worse for my dad. He and my mother had set about getting divorced in january. I saw him on the weekends, but one weekend a combination of things, mostly aids and cigarettes, led him to catch pneumosistis pneumonia. If you know someone who has aids you have probably heard of this. It's how most aids patients die.

More than i hated seeing my dad sick i hated seeing him inprisoned in the hospital. Every day wasting away bit by bit. The smell was the worst part, that rancid amonia as you walked in the door. The pervasive doom in every room, hospitals are not happy places. They are a place of death, where everything gets a biohazard sticker and is put in the propper color coded bag. I hate myself for it now but i argued with my mom to not take me to see him in the hospital as he died.

I feel like i failed him in someway, but i know if he is still out there somewhere he knows that i love him. I suggest that any of you at odds with your parents make up now, before its too late. You might regret what you miss for a long time to come. I'm just now starting to deal with my situation. If you have already missed out then i feel your pain, and hope for all of our sakes that i'm wrong and heaven exists. More than that i hope i get in without having to bribe st. peter.

My family could tell that i was pretty disturbed by the whole situation and they aranged for me to go to camp for several weeks. My father died while i was at camp. i never got to see him after he died, never got to hug his cooling body, or kiss his forhead one more time. The person that i had known and loved, a person who had taught me so much in the brief period i had known him, a person... ended like that. That was one of my first harsh truths about the world. Human life is fragile. In todays society we are so used to our security. One need not worry about death in a real way during most of their life. Still its never more than half a second away, what if the support beam for a bridge broke on your way home to your house?

It makes things relative, i live for experience. Always be ready to go but be scared of it and you'll have your shit in order. My dad was frightened to the point of denial. He left a legal mess in the form of a leased car and a will that he signed under heavy sedation. Im pretty sure the legality of the case is questionable. It dosn't matter though, the doctors were good to him. They saw it comming and allowed him to sign a do not resucitate order. Then they gave him a morphine drip, and then they gave him the control to it. You might not call it euthenasia. I would.

His heart stopped beating for a while the day he died, and then started again. Or so i was told two days later after breakfast at camp. I was about to go gun shooting, i had been looking forward to it all week. Strange what you can remember when you try. My mom had nice clothes for me, i got dressed up to go to the wake at my grandmothers house. They had ham, and some other food. The ham was the best part, i always remember the food.

The next day there was a funeral ceremony and my family and friends drove to our mountain house. My father had always told me he wanted to be buried there. He felt at home and peaceful in the mountains where he had grown up. He wanted to be buried under a weeping cherry tree. We took the ashes out of an impersonal plastic box only to find that the bag had been cut open and some ash started to spill about i frantically scooped my father into my hands and shoveled him back into the bag. We dug the hole for the tree and mixed the ashes with soil and water and planted the tree. I carefully covered the bottom in moss and watered it so that it would attach and provide extra moisture for the roots. I love that tree.

That night i became an athiest. It was a bad reason, i was upset with god because my father had died. I couldn't reconcile that action with any sort of empathetic being, i still can't. In the holy father's defense though my life has been pretty nice since. Well after my uncle died 3 months later. He was a good man too, and never an adulterer.
posted by sourbrew at 12:47 PM on December 1, 2002

Don't know if anybody already posted this, but here's the AIDS Poetry Project.
posted by fold_and_mutilate at 2:50 PM on December 1, 2002

Not as in depth as sourbrew's post, but see my story here.

AIDS touched me, just as intimately as it has touched many others. And although there is no cure, there is plenty of room for more information and understanding.
posted by LouMac at 6:24 PM on December 1, 2002

thank you for sharing that with us, sourbrew.
posted by tristeza at 6:59 PM on December 1, 2002

A personal favorite of mine is DogPoet's Campfire. I can't say enough about this guy's writing. Much of it revolves around love, life and a dog named Louie. He's also chronicled the loss of his mother, recovering from addiction and his job at an animal shelter, making for a very poignant and spiritual touchstone.
posted by yonderboy at 7:38 PM on December 1, 2002

Thanks for the link, Matt. FYI: The permalink to Heather's story is fray.com/is/without.
posted by fraying at 8:47 PM on December 1, 2002

Stonefishspine also had a good post about the subject today.
posted by mathowie at 10:40 PM on December 1, 2002

sourbrew, the problem of reconciling human suffering with the concept of a loving god is something on which the Gnostics have an interesting view, too complicated to go into here. But thank you for the reminiscence.
posted by y2karl at 11:35 PM on December 1, 2002

Y2karl, i checked on the meaning of Gnostic, and found nothing really about what you were talking about, perhaps you could send me a link of some sort where i can find more information. What i found seemed to suggest that its a very old religous sect hung up on the differences between a demiurge, and the unkowable god.
posted by sourbrew at 9:39 AM on December 2, 2002