I can remember back when I was a child and things were difficult. All the lessons life had to teach me, the hardships, the abuse, homelessness, drugs, rape. I struggled and fought to survive, thru the darkness, only to make it to 18 and find something had hidden itself deep in my body and hung on for the ride.
Being diagnosed with HIV at 18 was difficult to hear. Being told I had 6 months to live was the icing on the cake. What does a person do with that kind of information? I will tell you what went thru my head and my heart. Fear, disbelief, anger. Feeling as if now I’m on limited time to do all the things I had dreamed of, planned of and wished on during the entire struggle that my life had been. Other people took it as a means to kick me to the curb or use me as a means for garnering pity for themselves. I really felt like I was trapped between my old life and the life I almost had. Part of me wanted to revert to the old and familiar life of drugs. Something inside me decided that was not the route to take.
So I waited. Biding my time waiting for death to claim me. 6 months came and went, then a year. I found myself putting life off because every time I saw the doctor they kept preparing me for opportunistic infections, giving me new restrictions on what I could and couldn't do. Then came the drug trials, AZT was the great wonder that made me so sick I felt like dying. That's how my life progressed, one inch at a time. I got really good at short term planning, any dreams for a normal future now gone. I distanced myself from people I knew, isolated myself from any new relationships because I thought it would be better to die alone and not put myself or anyone else thru the agony of death. In 2000 my HIV was suppressed; medication was getting better at allowing a person to live a fairly normal life.
Then something finally happened, but nobody could explain it. My brain got foggy and slow. I couldn't work. I could barely get out of bed. Reading, writing, driving, cooking, all things I did on a daily basis and took for granted were now nearly impossible. I went for tests, spinal taps, MRIs, CAT scans, you name it they did it and could not determine what was wrong. So they told me this was it. I had HIV dementia; I would be a mental vegetable forever. This was devastating to me, an independent stubborn survivor. The worst scenario was unfolding right in front of me, a long drawn out illness that would leave me dependent on other people.
After all the tests and some visits to a great psychiatrist who convinced me to try Ritalin, I fought back against the brain fog. I played games on my computer designed for kids, matching games, word games and math games. I read children's books until I had tears in my eyes from the effort of concentration. All the lessons of life had molded me into a fighter and I came back from the edge of oblivion again.
After 2 years of struggle I was determined to start living life instead of waiting for death. Life was staring me in the face, and as far as all the diagnoses and doctors' opinions were concerned, death was late. So I embarked on a journey with a lot of risk and uncertainty but with gritty determination to live life, to explore, to learn and to dream. I started with small educational goals, building confidence, going to school for certifications and I was successful. Now, 14 years later I am a full time online college student, in an accelerated BA program and I am getting straight A's. I also work full time. I am trying to reconnect with friends I thought I'd lost forever and give relationships a chance.
26 years is a very long way from 6 months, and I can see forever is again on my horizon. So never give up, keep your dreams close to your heart and trust that those challenges and lessons life throws at you are someday going to be the skills you call upon to thrive, not just survive.
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Thank you for updating us on all you've been up to! We are so happy to hear of the amazing things you are doing through your determination to not let this diagnosis stand in the way of fulfilling your dreams!