30 Years Living with HIV/AIDS
In 1986, with the help of Delaware Lesbian Gay Health Advocates (DLGHA) I helped found, organize, and create The first Delaware AIDS Walk. The world was a different place and HIV/AIDS was called “the gay cancer.”
If someone had told me then I would still be here 30 years later, I would have said they were crazy. The HIV/AIDS epidemic was at an all time high with a life expectancy 6 to 21 months. Hollywood icon Rock Hudson announced on July 25, 1985 he had AIDS and on October 2, 1985 Rock Hudson lost his fight with HIV/AIDS.
Imagine being 25 years old and seeing the world from this perspective? I was not feeling well, I had been sick in bed for about two weeks. So I went to my family doctor to get checked out and asked to be tested for HIV. The reaction from my Doctor to my request of being tested for HIV/AIDS was astonishing. He left the room and came back in dressed like he was doing surgery on an airborn disease, covered from head to toe! Kind of scary.
I was not prepared for the call I got from his nurse about a week later. My test was positive she said. I asked, when I could come in to talk to the Doctor? “No the Doctor does not want to see you again he can’t help you!” she said. In my fear I asked her how long do I have to live. She replied maybe six months to a year. I was 25 years old and being just told I most likely would not see my 26th birthday!
I asked myself, “Why me?” I mean everything I had dealt with already in life “being different” as it was called then; picked on everyday in school, being beat up and humiliated in front of the other kids in school because I was gay! Learning how to accept and tell my family about this at age 16, that I was gay was challenging. I was really lucky I had the world’s best mon who stood by my side. She was with me the day I checked in to the Wilmington Hospital, seeing lot of guys I knew, very thin and sick. Seeing what I had to look forward to, so many thoughts were going through my heard. I remember I was scared as hell, but a wonderful and compassionate nurse named Arlene assured me I was going to be fine.
My life did change a few years later when I was living in Virginia Beach. My roommate was a nurse and told me about NIH and some drug studies. I was not on any meds yet because back then they did not treat it until your CD4s got to a certain level. I had to commit to taking three drugs every day: AZT, a pill, and two injections—alpha interferon and GMCSF. I was not sure about this. The side effects were one thing, what was going to happen was another. I was very healthy, I did not look sick, and I had energy and was always on the go.
They explained to me that they would be taking me almost to death and back, in a sense. I did it, what did I have to lose. I was not ready for the first night. I stayed with a close friend who lived in DC. I was more comfortable there, and Larry was a great guy, just a great caring friend. I took my first dose of all three around 9 p.m. I went to bed not knowing what was in store for me!
I went back to NIH the next morning. Hell no I am not doing this I thought. When I got to clinic, friends that I had meet from visits before said it would get better and made me look on the bright side, and the benefits. One of the guys said going to a warmer climate helped him a lot with his side effects. He asked if I knew anyone in Florida? I did, my godfather and great friend Dale. He was a life saver. He opened his door to me anytime I wanted. I chose not to work for about six months. I had no energy, and I had lost a lot of weight and my hair. I looked like I was dying. I looked really sick; it was not fun, and I lost the taste for food.
About a year and a half later my life got better. I adjusted to the meds and life went back to a new normal. I took a train to my weekly doctor’s appointment. I even made friends on the train. One person who stands out was my new train buddy Joe. He was our U.S. Senator, and we got to know each other on the train. He was someone that did not know or ask about my status. We shared many train rides over the years of my study at NIH. Joe gave me lot of advice as I strived to be an entrepreneur. I remember he said you will do it, trust me. I said I don’t know I have too many odds against me, and no money. If he only knew! I was on welfare and food stamps getting all sorts of public assistance. He did not know all that or the fact that I was HIV positive.
“Just be a true person and a person of your word”, he told me. He gave me some of his beliefs on what got him where he was. I was lucky to get to know him and appreciate the knowledge he shared with me. Thanks, Joe Biden! You were right Joe, you said to me “you can do it against all the odds, wait and see!” Those words of wisdom went a long way for me. Some days I was feeling terrible and he was the bright side of my trip to death and back, never knowing what or why I was going to DC. I was lucky to get to know him. He was a great inspiration!
The next year my life really changed, I moved to Tampa, Florida. In a few months I had a boyfriend and a dog all in the same day. There had been a stray dog I had been feeding. I named her April. The same night, I went out with my best friend Michal, and we went to a karaoke bar. After a few drinks he was ready to go. I said no, my future husband has yet to sing. Who are you talking about he replied. I pointed to this cute strawberry blond guy at the bar. I had no idea he was going to sing “Cats In The Cradle.” I melted. He was great, he could sing and dance and we hit it off.
He stood me up on our first date. I had gotten used to them running away after I told them I am HIV positive, but I had not told him the first night. I planned on dropping that bomb over dinner, but he never showed up. Later that evening I ran into him and I went right up to him and said you could have called me and said you were not coming. We talked, he told me why he stood me up, and he just thought once he told me he thought I would run like the rest of them.
We talked for hours. His name was Michael. He was born in Indianapolis, Indiana from the south side. We were together every night. Sadly I lost him 17 years ago and not a day goes by that I don’t think of him.
I was now 37 and single again and I remember the countless rejections when I told people I was HIV positive. Being HIV positive, I always felt rejected.
Last year my life change again, my best friend dropped dead of a massive heart attack. She was the rock that grounded me and the voice of reason. She knew everything about me. Her death took a big toll on me. It made me look at my life. In one of our last talks we talked about my HIV, and I confided a lot to her. She gave me a lot of good advice in business and in life. Life is too short not to be happy and not to live it to its fullest she said, along with a lot of other things. I had never had a friend like her before. She was a New Yorker and told you like it was. Her death made me realize what I have to be thankful for and the things I have overcome.
To those who still harbor stigma, try walking in my shoes for 30 years. I have been HIV positive, and I am one of the longest living HIV cases in the state of Delaware. Yes, I was a client of AIDS Delaware, at one time on Medicaid, and used the Ryan White fund to pay my rent. Today, I don’t need any of that because I own a successful business that I built from the ground up. I give my time and money to help people with HIV/AIDS, I have watched my closest friends lose their fight with HIV/AIDS. Now I get it. Trust me, I have had this for 30 years and it is not something I would wish on anyone, but its 2016!
I dedicate this article to two special people in my life. One is the love of my life Mike. He gave me the courage to be the best that I could be. He was my soulmate and was someone that treated me like a piece of bone china and told me he would live in a cardboard box just to be with me. The second is my mom. I lost her right after I contracted HIV. She was there to hold my hand until she slipped away.
I have overcome a lot in life. So you can reject me, or call me damaged goods, and I will overcome that too. I know I am HIV positive, healthy, happy, and successful. Now HIV does not define me. It’s just one small part of who I am.
Peter Chakonas, owner of Pride Klean, and a proud Board of Trustees member of the Delaware HIV Consortium, is helping to organize and recruit donations for the 30th annual AIDS Walk Delaware. He will be in Rehoboth at Grove Park for this year’s walk, one of two locations. Stop by and say, “Hi.” Consider making a donation or registering to walk at aidswalkdelaware.org.