HIV+ people who have never taken AIDS drugs, or have stopped taking them.
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Jamie

July, 2015

My name is Jamie. I’m 25 years old and I was born HIV+. My mother was given a batch of “bad blood” during a transfusion she had in 1984. I’m unclear of the facts concerning her own bout with the virus, but I do know she refused medication. I also know that by 1990, my birth year, the virus had progressed to AIDS and by 1994 she was gone.

For the first 4 years of my life I pretty much lived at the hospital. I don’t remember much, but from my understanding I was a great guinea pig. At the time, not much was known about medications and especially the effects they would have on a child. Once I was able to return home, I was closely monitored, and every 3 months I would have to return to the hospital for blood tests and a new concoction of meds. It was difficult as a child to understand why it was all necessary. To me it was just tiresome.

As I got older, my doctors explained more of what the virus was and what it did specifically to the body. Everyday, 3 times a day, I would have to take a syringe of some foul liquid that was supposed to keep me healthy. Despite everything though, it never felt real. I had no symptoms, I didn’t feel sick, so why all the hub bub?

During my time at the hospital I had made a friend. A boy, my age, who had also been diagnosed HIV+. It was wonderful to have someone to talk to. We complained about the blood tests and compared side effects of different medicines. We, or rather our guardians, always tried to schedule our visits together. Unfortunately, he passed away at the age of 13. That’s when I kind of started to understand. We were sick, we were different, and we were predicted to have hard, short lives.

At the age of 11, I moved away from my grandmother, who was my guardian, to live with my sister. I had progressed from liquid medications to pills. Every morning and every night I’d have to swallow up to 7 different pills. I had no idea what they did, much less what they were called. All I knew is that I was different, and I hated it. I was fragile, so I couldn’t play sports. I had to take medication every night, so I couldn’t sleep over at a friends because they might ask questions. There was so much I felt like I couldn’t do and so much of my life was governed by fear.

From a very young age it was instilled in me to never disclose my “condition”. I was told if people ever found out I could be kicked out of school, I would lose my friends, nobody would want to get near me. It was yet another example of how different I was. By 13, I started rebelling. I refused to take my meds. Instead I buried them in the back yard. I also started applying my differentness to other aspects of my life. I became reclusive, abrasive. I figured what was the point of having friends if I had to lie to them? I also took on more of a fatalistic view of life. We all die, my death will just be sooner. Of course, as a teenager, there’s already so much pressure at school and at home. With my disease added on top, it was no surprise that I became depressed, border line suicidal. I felt like I was sinking, but didn’t deserve to be saved.

My sister, at the time, had her own issues going on and had very little time for what she called “my drama”. All in all, it was a bad situation. At 15, I was moved from her place to live with my aunt and uncle. As an adult, I can now see and appreciate how they tried to get through to me. To make me see that if I was responsible, my disease wouldn’t be the end of my life. As an angry teenager though, it was just more adults telling me how I should feel and what I should do about something they had never experienced.

Tension rose to the point that I never left my room except for school. That lasted a year. Throughout all this was yet still more doctors, more tests, more medicine. I felt like I was trapped, losing myself. Not that I ever really had myself.

At 16, tensions rose and fell until the day the last straw broke. My aunt no longer wanted me in her house if I couldn’t bring myself to interact with her family. At the time I just wanted to be left alone and I guess I got my wish. A week later I was a ward of the state. A foster child. A reject.

Lucky for me, my foster family was nice. It was clear I wasn’t “real” family, but they clothed and fed me. They gave me a place to sleep as long as I stayed out of trouble.

It had been 3 years since I stopped taking medication. At my next doctor appointment I had fully expected them to tell me I was close to my death bed. But, surprise, surprise, my CD4 count was up and the viral load was so low it was barely traceable.

I couldn’t believe it. My whole life had been a lecture on the importance of medication and how I had to “stick it out” no matter the side effects. My life was a never ending chain of pills. Until I broke the chain and then found out that I’d never been healthier. My mind was blown.

Now, of course, it had only been 3 years and the virus was smart. There was always and will always be the possibility of declining health. But isn’t that true of everyone? We hit our peak in life and then start the steady decline of our health and mind. I made a decision that day. I was going to live the rest of my life on my terms. No more medications, no more doctors. If that meant I was going to die tomorrow, then that’s just how it was meant to be. I don’t believe in God or his plan, but I do believe there is a power moving the world beyond our control or understanding and when our time is up and the last breath is taken we must all accept it.

It’s now been over 12 years since I stopped my medications. It’s been about 9 since I’ve been to the doctor. Sometimes, I wonder if I made the right choice and how it will affect those who I’ve chosen to trust. When that happens I make myself stop thinking and start living. Embracing the life that I have while I have it. Free from nausea and headaches. Free from blood tests and doctors. Free to set my own path and to this day, I don’t regret it.