Growing up, I never gave much thought to "quality of life." Nor did I make decisions with any thought as to how they might impact it. Kids are like that. As an adult drug addict, I continued in the same vein (no pun intended), hoping that life would just get better. But I was still somewhat directionless -- and definitely powerless -- about getting my thoughts, and more importantly my actions, in sync with living.
My first step toward making self-supportive, quality of life decisions was realizing that I was miserable and that my drug taking was a big part of it. My quality of life definitely improved after a short while off drugs. I could think more clearly, and I wasn't broke all the time. But this didn't mean I knew what to do with my life, and I felt a fair amount of confusion when I even tried to think about it. That's where therapy came in. Although at times it was and still is painful, taking an up close and personal look at myself with a therapist helped me to feel steady, more real and in control. Diving into a 12-Step recovery group was the most important thing I've done to maintain an emotional quality of life over time.
But what about living with HIV, Hepatitis C and cirrhosis? When I look back at my reactions to these diagnoses, I see that over the course of the first few months an interesting process kicked in, a process that I half-jokingly call the AIDS Advantage. To get the "advantage" I had to sort through some feelings and put them together in a way that would support my health:
- the feeling that my time on earth could be drastically reduced by diseases;
- an understanding that stress and depression would kill me; and
- the recognition that doing things that excite and interest me feels good.
These simple thoughts, and a willingness to try, gave me a major advantage in living. They inspired me to cut out many of the negative influences in my life and stimulated me to do the things I always wanted to do but had put off for fear of failure. I discovered a tenacity for living and an inner strength I didn't know I had.
"We can get used to almost anything and incorporate the most extraordinary things into our lives."
In 1989, my doctor charted my life expectancy to be two years, but by going through this process I believed I could go to school, work, become an athlete, create art and do any number of things. People would say, "Why are you working so hard? Is this the way you want to spend your time -- on things you'll never get to finish?" My answer was, "Yes, what else should I be doing?"
My quality of life remained great until my T-cells got down to 5 and my viral load skyrocketed. I didn't feel sick, but the numbers said I was an accident waiting to happen. I started on HIV antiviral treatment in 1995 in one of the earliest Crixivan trials (ACTG 035), taking it with AZT/3TC. For the first three months, my physical quality of life plummeted. I had to take drugs with inconvenient eating restrictions three times a day. Side effects impacted on every area of my life, and my search for ways to lessen them became a mission. While the side effects were at their worst, I wondered if I could continue to perform well in the life that was giving me so much emotional benefit. The process I described above kicked in again, and I hung in there.
It's weird how adaptable humans are. We can get used to almost anything and incorporate the most extraordinary things into our lives . When facial wasting and truncal obesity entered my life, I was devastated but determined to do everything I could to stay on treatment. I am still in the 035 study and still have an undetectable viral load after five years. I feel as if I've traded some quality of physical life for a larger quantity of actual living.
As long as I am alive there is hope that one day my quality of life will be great in every area. Until then, I use the fortitude I've learned over the years to stay in the game, make the best of the life I have today, and help others know that quality of life is, for many, an inside job.
Lillian Thiemann is an HIV educator and a member of the NYC Women's HIV Collaborative, an organization that is currently formulating advocacy agendas and action to benefit HIV positive women.