Thursday, April 24, 2008

Why I'm walking

My Participant Page

I didn't attend the wake or the funeral. I'm not sure who stayed with me on those days, but I remember my parents dressed in black, my mother clutching the black leather rose she was leaving in the casket. Later they told me how the Harley Davidson roar behind the funeral procession sounded and what it looked like to see one of the cousins, a grown man cry as he knelt over the casket. It took years for me to forgive myself for not attending the services. I was 10.

Mark was the crazy relative who brought the best presents and showed up after the party ended so he could have me to himself. My mother always said he was her favorite cousin because he was like her. He and my father got along great. They had the same taste in music and snake boots. He lived a reckless life full of women, drugs, and motorcycles making him one hard needle in a haystack to find. After one of his many disappearance acts, my mother tracked him down to make sure he attended their grandmother's anniversary party. She told him that it was imperative he attended because who knew how long Grammy would live for. Nobody thought he would die first.

I don't remember how my parents explained AIDS to me. I'm not sure they understood the difference between HIV/AIDS or anything about it, really. My mother began checking books out at the library. She became friendly with the people at AIDS Project Worcester. At nine years old I knew more about the disease than most people will ever know in their lifetime. I got a first hand account of the devastation it leaves.

He was living in a Hospice on Mission Hill in Boston. Every Tuesday and Thursday night my parents and I would pick up my Grandfather and visit Mark. In the beginning it was fun. We picked up dinner for everyone, usually Domino's or some form of Italian food because that's what he always wanted. He would joke around with me, always getting my doofy kid smile. He offered me juice boxes but I always declined. I hated Ecto coolor. I would always take the candy. As time wore on the visits became less pleasant. My parents explained to me that if I didn't want to go anymore I didn't have to. I spent a lot of time coloring in a room upstairs. I drew a picture with all different kids depicted, it was very diverse. I think I even had a wheelchair. I wrote something about accepting everyone no matter what. I gave it to the Hospice and they hung it up. I think they ended up sending it to Washington to be in an exhibit.

One day I told my parents I didn't want to visit Mark. He was almost completely non-responsive. They had to feed him through a tube. He didn't know who I was anymore. That weekend we went to an amusement park to celebrate my 10th birthday. I brought back a Harley Davidson pig that my dad won to give to Mark. We were all in the kitchen when the phone rang - nobody was surprised.

That first year his entire family participated in the AIDS Walk in Worcester. His mother had shirts made with his name on the back and a picture of a motorcycle. I walked with a giant stuffed Harley Davidson bear on my shoulders. My father joined a team and we walked the AIDS Boston Walk that year. And the next. I drew a picture of two guys that looked the same. Under one I wrote "He has AIDS." I listed all the things that were the same about the two boys and that we should love people with AIDS. My dad's team at work made my picture into their t-shirts that year.

And then we stopped walking. I got older, we got busy. My parents got divorced, I was in high school. Then I went to college. And although I didn't realize it, I carried my t-shirt from the first walk with me through all of life's many stages.

I made a pact with myself when I was 10 that as soon as I was legal to drink I would bring a can of Guinness to Mark's grave and pour it in. I've done it three times. His mother called my mother to ask where the can came from.

Tomorrow it will be 15 years since his death and I still think about him. How, even though he was reckless and contracted this awful disease, he used what was left of his life to make amends. He got clean and joined a sober biker club. He patched things up with his parents. He was involved with experimental drug testing so those to come after him would have a shot at a better life.

That is why I'm walking in the 2008 Boston AIDS Walk. I want to give back to an organization that fights the disease that took Mark away. Whenever things go wrong, especially family matters, my mother will go to his grave and yell at him for leaving too early. She said he always made things easier to deal with.

I would appreciate ANY donations. Really, if you want to pledge 1 cent, I'll happily pass it along! If you want to donate but don't want to do it online, they accept donations by check (mail) or even credit cards over the phone. And if you want to meet in a dark alley to shove cash into my pockets, I'll make sure they get that as well.

More information: AIDS Walk Boston
AIDS Action Committee of Massachusetts
Donate!