October 31, 1995. I was sitting across from my counselor. She did not have to say a word. I already knew the results: I was HIV-positive. I was filled with shock, rage, hatred and fear.
Almost three years later, in July 1998, I received a call from my doctor. He told me that my viral load had dropped from over 750,000 to 650 in four months. Again I was filled with emotion--this time, excitement and relief.
The years between my first post-test counseling session and my doctor's call were difficult ones. It took all the support I could get to go through the anger, the denial, the sadness. I had to let my family and friends go through this process too. And I had to understand when some of them were not ready to accept the news.
The only experience I can offer is that of living day to day as a survivor. And the most valuable lesson I've learned is how powerful the mind and spirit are.
My experience with antiretroviral drugs shows just how important the mind and spirit can be. It also shows that these new drug combinations that some people have called an AIDS "cure" are not easy to take and don't always work.
I've been on seven different drug combinations. Some didn't affect the amount of HIV in my system, and others caused severe side effects. I'm actually running out of possibilities. I had to get FDA approval to take one of the drugs I'm on now, Sustiva, because it wasn't on the market yet. It was an experimental drug.
Even when the drugs do work, the side effects are very difficult. With some of the pills I used to take, I'd have blackout periods. I'd be walking and all of a sudden I'd be unconscious for a few seconds. Once I had to be wheeled out of my office in a chair and taken home because I couldn't even walk.
I have what's called neuropathy in my left hand. I feel tingling and numbness, and sometimes the pain is so bad I can't use it. There are times when I have a problem simply picking up a book with it. Sometimes I can do it, but other times the pain that goes through my hand is so bad that all I can do is cry. And I am not one to cry.
Neuropathy is a very common side effect. Other common side effects that I have experienced are headaches, upset stomach, diarrhea and loss of balance.
I take 38 pills a day. That's eight different medicines a day, including two allergy medicines and a multivitamin. When I have a side effect, I take more.
All but one of the medicines have to be taken with food. One of the side effects of these medicines is nausea. But even when I don't have the appetite to eat, I have to force myself to eat in order to take the pills. They are all pills, so I need fresh water to take them too.
One of the medicines must be taken on an empty stomach. I take four tablets dissolved in water first thing in the morning. Then I take ten pills at 10 a.m. and another nine at 4 p.m. Before I go to bed, I take 15 more pills.
It took me a couple of years to learn to take these medicines the way I am supposed to. I was saying, yes, I'm taking my pills, but in all honesty, I wasn't always. I was not brought up to take pills--I rarely took even an aspirin. So taking all these pills was a difficult new process I had to learn.
I started with AZT. I think the biggest reason AZT didn't work for me is that I went in with a negative attitude. I thought, I'm going to get all these side effects. And I did. I experience some side effects with the pills I'm taking now, including the neuropathy in my hand. But I'm learning that with a positive attitude, I'm able to overcome the side effects, or at least live with them.
For example, whenever I start feeling ill, I remember a walk I took with my parents in the spring when the cherry blossom trees were starting to bloom. I try to remember that feeling--how gorgeous it was, and how at peace I was with myself. And that helps tremendously--not just mentally, but physically.
I remember one time in particular, when I was walking and I tripped and scraped my hand. It really hurt. But I made myself think of the cherry blossoms, and then my hand didn't hurt any more. If I had sat down and looked at my hand, it probably would have hurt for a couple of days. But I didn't let the pain affect my mind. I took it away from the pain.
Of course this is not going to work every time. I still have pain in my hand, no matter how much I think about cherry blossoms. But there are times when you can overcome pain. Most of the time you can. You just have to keep trying until it works.
I realize that I am very fortunate to have access to antiretrovirals and even experimental drugs for HIV. But in my opinion, the most important factor in improving my health has been a positive attitude. Adopting a positive attitude has made a direct difference in my life. Now HIV is making me take care of not only my body, but also my mind and spirit.
It took me three years to learn just how powerful the mind and spirit are. I think the turning point was when I had a lymph node removed from my neck. They removed a mass the size of a tennis ball. Fortunately, it wasn't cancerous. But that was a real eye-opener for me. And I think that was when I stepped over the line and started to take an active role in making my HIV status a positive rather than a negative.
What helps me most is meditation, the support of family and friends, and reading--a lot of reading. Through reading, I've learned how to use meditation to conquer pain and I've been inspired by the success stories of other HIV-positive people.
The biggest success of my life so far has been riding my bike 350 miles from Raleigh, North Carolina, to Washington, D.C., last year in an "AIDS Ride" to raise money for HIV/AIDS care and support programs. I wore a jersey that said "Positive Pedaler" on the back, and I got so much support from the people in all the towns we went through. And seeing other people out there--all age groups, all genders, all races--for a cause that affected me directly was so uplifting.
When I started to train for the ride, I hadn't ridden a bike since I was a child. I couldn't even change a tire. So I never thought I could do the whole thing. But getting out there and proving to myself that I could do it was a wonderful feeling. When I grow old, that's one thing I will always remember.
Of course everyone doesn't need to go out and bike 350 miles. But regular exercise and good nutrition can help keep you healthy. Just getting out and walking every day can make a big difference. And you can use that time to meditate and relax, to concentrate on the positive things in your life.
Being at peace with myself helps me maintain a positive attitude as well. Many of us are told that we are being punished by a higher power. Once we realize that that isn't true, we can let spirituality back into our lives.
My daily inspiration is a quote that I have posted above my desk at work: "By being open about my status, I found it served more people than just myself. And that attitude has kept me alive."
I count myself extremely lucky because I can be very open about my HIV status with my friends and coworkers. And I enjoy talking about it because I like educating people. That education is three-fold: teaching people who are positive how this can be a good experience, talking to caretakers about how to care for those who are positive, and helping people who are negative understand how important it is to stay negative.
To all of them I say: "How we protect and care for ourselves matters now. Our positive attitudes and behavior matter now."
-- George Kerr III
George Kerr III is an administrative services assistant in FHI's HIV/AIDS Prevention and Care Department in Arlington,Virginia.
