I was told about my status at a general office visit at the Hemophilia Clinic at the Children's Hospital. I was about 18 when I was told and was in between classes at the university. I left the office walked back to campus and went to my class, obviously quite upset. After class I went to Belle Isle, parked at the foot of the island and had a good cry. After all, it was 1985. I was going to die before I ever finished college. At that time there was nothing they could do for me. There were no support groups to send me to.
I composed myself and drove home and told my family. It seems my parents were not surprised to hear the news as my brother was diagnosed at the same place some six months beofre I was. They did not want to upset me and wanted to keep some hope that one of thier boys would find a way to escape it. That was not going to happen.
I did end up making it through college and went to graduate school. I kept with my goal of finding employment in a profession that help improve the quality of life. I was often times moody and sometimes had too much to drink, but for the most part stayed out of trouble. I harboured a great mistrust for the medical community and for homosexuals.
Later I would find employment and would often ride the bus to work as it was very convienent. One morning the bus was rolling through a neighborhood and past a place known as the plasma donor center. In front of the place was a line up of what best be described as the downtrodden. Most folks in the line appeared to be drunks, drug addicts, or prostitutes selling thier blood for the next high. I had a revelation. I was directing my anger at the wrong people. It was the system as a whole that let me down.
Family life was always a struggle. At the time I found out was the time when children not much younger than me, Ryan White and Ricky Ray were getting burned out of thier homes. I had to keep everything quiet. At the same time my parents felt horrible because the medicine they had given my brother and I as a way to keep us well had failed us. We were lucky. Dad had a good job with good insurance so when in doubt we were infused. I look back at that as not being such a good thing. While my brother, parents and I had it bad, my sister had it worse. She was spared from the virus and felt guilty for not having it.
It was my brother who had turned me onto his doctor when I was starting to show symptoms some 14 years into the virus. I took his advice and had problems with my insurance, but it did help me. I had resisted going on treatment because when my brother started all they had was AZT and it turned him into a scarecrow. No way in hell did I want to go through that.
My brother was very successful in business but the last few years were very hard on him. He had to close stores and finally fold up completely. He could no longer afford insurance, but being a proud man he would not accept help. He told our doc he was seeing another doctor out of system and our family as well. This was a lie. The day after his funeral I had a doctors appointment with our ID and had to break the news to him.
Jeffy it seems many have lost their fight this year. Please stay strong even when you feel like you don't want to…I am saying this to myself too. I know we have been out of touch, but you know how to reach me. Please call anytime if you need someone to listen.