A story of HIV via Twitter
December 1st was World AIDS Day and it came and went with little attention from the media. You know Tiger Woods is much more important. Anyway. The Huffington Post spotlighted the Twitter feed of Chris MacDonald-Dennis. MacDonald-Dennis is a college dean in Philadelphia. On World AIDS day he fired off 100 tweets, 2,100 words, documenting his life and his HIV infection. It’s pretty moving and keeping in mind Twitter posts are limited to 140 words, the end result, when read chronologically, is like an epic poem. It is full of frank and honest dialogue and also hope.
* Today is World AIDS Day. In honor of it, I’ll tweet my story of living with HIV @ 9 pm EST.
* Good evening everyone
* In telling my story, I am going to use the hashtag #livingwithhiv
* I have spoken to thousands of people about my story but for some reason, I am nervous tonight
* Think it has something to do with not being able to see faces, get reactions. But I know people are reading and will learn
* I’d like to not only talk abt living w HIV but talk about the reasons I made the choices I made and the things I’ve learned
* A bit about me for those who may not know: I am 40, biracial and gay. I grew up in Boston in a working class neighborhood
* When asked to describe my family, I always tell folks that my parents shouldn’t have had children.
* I grew up in an extremely violent household.
* My dad was an alcoholic and my brother was diagnosed as a sociopath when he was a teenager.
* I tell you these things because I believe they informed why I did not choose to protect myself.
* Life was difficult for me growing up. I was a sissy in a place that did not allow sissies.
* At the age of 9, I was put into the hospital by neighborhood bullies because of my being effeminate.
* I often felt alone as a child and would spend hours w books, trying to escape the pain of my life. I never felt like I fit in
* When I went to college, I was thrilled to be in a place where I could be me. I became super gay man and came out to the world
* I was one of those folks “Hi, I’m gay and oh, by the way, my name is Chris”. Activism filled a hole for a while
* But because of the pain of my childhood, I always had this hole, this void. I never fit in, I didn’t trust people
* During college, I met this guy and we briefly dated. I’ll call him Rick. We went on a few dates but nothing came of it
* I dated two men from 1990-94, one for 2 1/2 years. The latter relationship was w someone on board of aids action
* In both relationship, I always used condoms.
* I “knew better”, as they say. But there was still the void. I used condoms, I realize, b/c the men insisted
* I broke with my long-term relationship in 1994, when I was in grad school. I moved out and got my own place in early 95
* I will never forget the night I reconnected with Rick: Easter Sunday 1995. In MA, there is a holiday called
* Patriot’s Day. (in MA, we have a day off every month Thus, I had that MOnday off. Friends and I went out to
* dance complex called Avalon, which had gay night on Sunday. EVERYONE was there. As I came off dance floor, I saw Rick
* You know how you see someone and they take your breath away because they’re so damn fine, that happened. I went up to him
* We started talking &he asked if he could take me home. I told him my friends & I had rule: you go together, come home 2gether
* He was a sweet-talker–went up to my friends and asked their permission. Of course they said yes. We went back to my place
* I remember when he did not put on a condom. I wanted to say something. But I was afraid that he would leave
* That void I described stopped me. I was more afraid he would leave than protecting myself.
* We had a tumultuous relationship. Those relationships that burn hot also burn out fast. I graduated NOrtheastern U and moved
* I moved to Detroit to become a Hall Director at a Catholic university in the city. During my first few months, I got
* a number of mysterious illnesses. One of my colleagues, for World AIDS Day, had some1 talk about living w HIV
* She described some of the things that happened to her body when she was first infected. I also remembered something Rick..
* had said when I asked about his status. He told me that he was afraid to find out. I had tried, after the 1st night, to ….
* convince myself that he MUST know he was negative. He did not. I realized I needed to get tested…but waited 2 months
* I went to get tested at the end of February. I have no idea why I finally did but I did. I went got my blood drawn and left
* I went back on March 10, 1996. I was with Sister Beth, the campus minister who lived in my hall.
* Sr. Beth stayed in the waiting room while I followed the counselor. He opened the file & told me that I was living with HIV
* I stared at him, dumbfounded. I really thought it’d be negative.
* He asked if I wanted a hug. I didn’t skip a beat :”Hugging strange men is what got me here.”
* He laughed. He told me that he could tell within moments how someone would fare b/c of their reacion.
* He told me I would be OK. I was not so sure. I went downstairs and put my head in Sr. Beth’s lap and cried
* I asked her what I was going to do. She looked at me and said “Live, THAT is what you are going to do…”
* I went back to my apartment and slept for a few days. Because of my past, I did not reach out to people. I was afraid…
* they would not be there and it would show hat I knew in my bones: no one cared about me. On day 3, I had to reach out
* I called my best friend from college who is a paleontologist. She is not emotional. She described what was happening in my
* body. She hung up and cried for 45 minutes. I called my former partner who had been in aids action. He got mad.
* Even aids action man got mad because he loved me…. I had friends spend hours on the phone with me.
* 1 friend called three days later. She told me to pick her up b/c she was at Detroit airport. She had come to take care of me
* I had never believed people would be there for me. I did not think I was worthy. But they showed me I was
* I went through a range of emotions: anger, sadness, fear. I remember brushing my teeth and my gums bleeding. I burst into…
* tears knowing people would be afraid of me.
* I did tell Rick and he got tested. It took him a while to do it but he did find out that he was +.
* when I found out, I was convinced that I was going to die immediately. I decided to move back home
* I accepted a position at a small rural college in New Hampshire. It was RURAL. I lived next to a covered bridge
* I chose that school b/c it was a place to figure out who I was with this disease.
* My colleagues at U of Detroit Mercy were wonderful but I had to be closer to people I love
* My 2 years in NH were difficult. I met many men who would say to me “you are everything I want except I can’t deal w this”
* One guy, who I had really hit it off with, did the same thing. That night, I sat at my desk with a bottle of pills
* I truly thought I had to end it. I did not want to go thru life lonely and having ppl be afraid of me
* Suddenly, I heard a little voice in my head say “What the hell are you doing? Look at you! Some man will be LUCKY to get u”
* did I believe that voice? Not so much…but it kept me alive. I thought of the pain of my childhood
* I thought “you did not survive a childhood no one should have had to off yourself b/c of this.”
* I used that time to journal, to come to love myself, to figure out what I wanted to do. I didn’t know how long I had…
* I attended a support group that helped show me what I was meant to do. We were a motley crew: gay, straight, black, latino
* poor, rich, trans, cis. Some contracted it thru drugs, some sex…. what we had in common was that we were all
* society’s throwaways. I knew that I my activism had to go on. I had to fight for us….to change this society
* I realized that I had too many people to piss off to die. I decided to go back to school for my doctorate.
* Before I started school,. I finally decided to tell my mother. We had never been close.
* However, my dad died during my freshman year of college and my brother died during my senior year: it was just us
* I went home for my 10th HS reunion and sat my mother down. I told he I had something to tell her. I have never seen such fear
* I explained that I was living with HIV. She fell into my arms and begged me not to die. I promised her I wouldn’t.
* My mom is a small woman and I just held her while she cried. She told me that I was the one thing she did right and I
* could not go…. I moved to Amherst, MA to start school. I was in a wonderful place in my life. Things were good…
* I did not have a partner but had many, many friends. In March of 1999, I attended a professional conference in Atlanta.
* A friend was speaking on a panel and I went to hear her. I sat down and saw this man checking me out
* I introduce myself and he did the same. He was the director of LGBT affairs at the U of Michigan and his name was Frederic.
* He was shy, which was generally not my type. I usually liked the flashy types. But he was a great listener.
* I asked him if he wanted to get together that night after the conference. He told me he would meet me in the veranda
* That night I met him. I tried to take a nap but there was something about him that kept me up. I went to the veranda & waited
* I looked up at the escalator and saw him coming down with his hands in pocket. My heart skipped a beat
* here was this shy gay Black man from Alabama. He belonged to 2 groups of men who often try to hide behind bravado
* but he was vulnerable. It touched me deeply. We hung out the whole conference. The last night he asked what was up
* I told him that I could not imagine getting on the plane and never seeing him again. He went back to MI and I went to MA
* we decided to try the long distance thing. Within a week I knew I loved him and within 3 weeks that I was going to spend
* the rest of my life with him. We have been together since then.
* It has been hard. He lost is mother a year before we met. He REVERED her…. he was afraid to fall in love w someone
* who could die…but he knew he had to, no matter how much time we had together.
* We talked a lot about life and death and what we wanted. Heady things for men in their late 20s/early 30s.
* He is negative and has remained negative.
* I always tell people that HIV has been the greatest gift I have ever received. I have learned such important things
* I healed because of this disease. I grew from the pain of my life. I learned to thrive.
* Does this mean I am not afraid? Not at all. I have been lucky with this disease.
* I started taking a medicine called Trizivir since 2001. I needed to take it bc I was put in the hospital due to low platelets
* Seems my immune system, while fighting the HIV, was destroying my platelets. So, I take 2 pills a day…not bad at all.
* This is my story. I would be happy to answer any questions. Thank you for reading. I am truly humbled….