Positive since 1984
I was born in 1984. At 3 months old, I needed open-heart surgery to correct a congenital heart defect. During the course of surgery and three long months in the intensive care unit, I was given a blood transfusion. I was finally sent home with a pacemaker. Imagine my parents’ reaction when they found out their kid is now battery powered.
When I turned 5 and started school, my family realized that I was the smallest kid in class. Luckily, it never stopped me from being a kid. I enjoyed life. I had a pacemaker replacement surgery when I was 10, and my family was still voicing concerns over my height and weight. Doctors assured them I was fine.
Life went on. Right after I started high school, I needed another pacemaker replacement. I was 15 at the time, and surgery went OK, but when I was coming out of it, I stopped breathing. I got back home and couldn’t get cleared to go back to school because of a bad cough that wouldn’t go away.
I went to see a pulmonologist. He asked me what was wrong with me. “Nice to meet you too doc. Geez! It’s my heart.” He proceeded to explain to me that my heart had nothing to do with my height or my weight. He then ran me through tests, ranging from dwarfism to cystic fibrosis. They all came back negative, so he sent me to another hospital and to new doctors to get growth hormones. My doctor at the new hospital was the head of her department, and she was using my case to teach students.
After about a year in treatment, which helped me grow over a foot taller, to 5 feet, and gain 50 pounds, I was introduced to one of the students in her class. The student told me that they had done a full chart review on me and noticed that I never had an HIV test and asked if I would submit to one. I agreed to the test and was sent home to wait for two weeks. The two weeks were spent with family going over every detail of the past 15 years. There was no way something like HIV would be overlooked that long. I saw the same doctors for years. They cared about my family and me.
The day my results finally came, I had my parents and grandparents with me. We all got put into a tiny little room, and one by one they pulled my family aside. My parents first, then my grandmothers. That left my grandfather and me. He did his best to keep me calm as I walked miles over that floor.
Finally, they came to get me. I was taken to a room. When the doors opened, I saw my parents with tears in their eyes. No one had to say what the test results were. I don’t remember much else of that day. I just shut down. I didn’t want to feel anything. I was numb. I just knew I was dead, and I began to picture my funeral.
A few weeks later, my journey into treatment began. I met an amazing medical team that not only brought me back to life but also showed my family how to laugh again. I was now a person living with HIV, and 22 pills a day was what was needed to keep me alive. I had one of those big medicine Trapper Keeper–like things. I hated it. Luckily, now the number of pills to take is a lot less.
Sometime later, I asked my doctor how long I would have had to live if I hadn’t found out about the virus. He told me I was within weeks of dying. I am happy to say that after a rough start with no immune system, I have rebuilt it and crushed the virus to undetectable levels. I’m as healthy as I’ll ever be thanks to great doctors and an amazingly supportive family. I am a survivor.
What three adjectives best describe you?
Fighter. Advocate. Friend.
What is your greatest achievement?
The fact I’m still alive.
What is your greatest regret?
The fact it took me so long to get the courage to tell my story.
What keeps you up at night?
Wondering if penguins have knees.
If you could change one thing about living with HIV, what would it be?
I want to change the stigma associated with it. We are not monsters to be feared. We are just like everyone else—only with better prescriptions.
What is the best advice you ever received?
I hope I haven’t received it yet.
What person in the HIV/AIDS community do you most admire?
Bob Bowers. He is one tough pirate.
What drives you to do what you do?
I live in the Southeast where new-infection rates are very high, and I want to help educate others on how to protect themselves.
What is your motto?
I can do this. It’s a phrase that has gotten me into trouble but always keeps me fighting into tomorrow.
If you had to evacuate your house immediately, what is the one thing you would grab on the way out?
My dogs. I love those crazy fluffy people.
If you could be any animal, what would you be? And why?
I would want to be an eagle. I like the idea of being able to soar above everything.
Editor’s note: Derek was a POZ 100 honoree in 2016.