The AIDS Foundation – My family’s personal story

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At the time I was selected as a judge for The AIDS Foundation World of Chocolate event, the great people at the foundation had no idea that AIDS had touched my family and after I told them, they asked if I would share our story. Very few people outside of my family know this because the topic is quite sensitive to us and in fact for more than a decade none of us has spoken of it, and as a result the feelings are still fresh and the tears come very quickly. After some discussion and a lot of thinking, we all agreed it is finally time to share the story of my Uncle Jesse. For me this means finally processing a long repressed loss and as I tap this out on my keyboard, the tears keep rolling and it feels like a weight is lifting.

He passed on October 31, 2001. He had been diagnosed in 1992, and I remember vividly my grandmother sitting next to me on the sofa and telling me. My mind instantly jumped to the thought of losing him and I cried as she held me. My uncle was a very kind, always thinking about everyone else, independent person with a big heart and though he could be very direct, he was also reserved and rarely spoke openly about his feelings. For the first six years he wasn’t suffering, or at least he didn’t let it show, and one day in early ’98 he asked me to move into his house, though he never asked me directly to help him out. Although my grandparents were just down the road, he needed someone to stay with him which of course I did. He taught me the precautions I needed to take while staying there, and I called the AIDS foundation hotline to learn as much as I could about the disease, and how to take care of him. It was in that year that that I saw him at his best, and also at his worst. Every night he would sit and count out his pills for the next day, he was on so many different prescriptions that it took a monthly pill box to organize what he needed for a single week.

He was always fun to hang out with, always a joker and when he would walk into the room he would bop me on the head and say “Hey Butthead!” to which I would respond “Hey Bigger Butthead!”, to which he always responded “how original.”

He had always been an avid traveler, and after his diagnosis he began to travel even more, intent on seeing everything he’d always wanted to see. When I wanted to apply to FIDM in Los Angeles I was prepared for him and everyone to try and talk me out of it, but he insisted he wanted me to go and wanted to take me there to visit the campus. When we arrived at LAX he surprised me with a rented convertible, saying “You can’t go to LA and not rent a convertible!” He went with me to my admissions interview, walked with me around the campus, and when that was all finished he said “So, can we have some fun now?” and we went to Universal and MGM Studios, then later to Hollywood, Venice beach, Santa Monica, and Rodeo drive, because, he said, “that’s just what you do when you visit LA.” Even if you only go for two days.

Eventually he started losing weight, growing thin and weak. I chose instead a school in Chicago, and I moved there in late ’99. I wasn’t there with him for the last couple of years as often I was in the previous, and though we talked often on the phone, he never told me honestly how he was doing. I received the call on Halloween that he had passed while lying in his bed. Not being there with him when he passed is one of the most painful things I’ve gone through in my life, because I didn’t get to say goodbye, and I still don’t have any closure.

My uncle Jesse was a great man with a wonderful personality and a big heart. He was my friend and is sorely missed every day.

About 50,000 Americans are infected with HIV each year. In 2010, there were about 47,500 new HIV infections in the United States. In 2011, the most recent year for which there is information, there were about 1.2 million people in the US living with HIV. Of those people, about 14% don’t know they are infected. In 2011, there were 13,834 AIDS deaths, and to date, an estimated 648,459 Americans have died of AIDS. HIV continues to be a significant cause of death among certain populations, and each of us can and must be a part of the solution. Find out what you can do to help today.

HIV/AIDS Information and Resources:
General information about HIV/AIDS
HIV/AIDS news
AIDS Foundation – Get involved
Act Against AIDS campaign
National HIV/AIDS Strategy

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