My Turn by Mark Jacobs

On the day after Christmas in 1992, I sat very still, barely breathing, in the lobby of the Valley Clinic, waiting to hear the results of my most recent HIV test. I had just finished my first semester at Cal State Northridge School of Music, returning after many years to study clarinet. My first degree was in finance and pursued as the “practical” thing to do. At three years sober, studying music—a dream I’d had since I was a kid—breathed spectacularly fresh life in me, a life unripe for such a cataclysmic change.

In the haze of a positive verdict, I placed all emotion aside and blindly carried on with the new practicalities of my now-tainted life. I experimented with early HIV drug therapies in various combinations, none of which worked to boost my immune system. In fact, all these drugs drastically dampened the quality of my life, so I chose none at all.

By the time I collected my degree from CSUN in 1994, I had grown accustomed to the idea that I may die soon. My T cells decreased with every new checkup, actually dipping to 168, which according to bureaucracy meant I had AIDS. It never occurred to me, however, to take advantage of the government by collecting disability income because I felt perfectly healthy. In fact, I landed a great job as Director of Finance for a well-known music conservatory, secured a sweet new apartment, and even found a boyfriend. Life seemed happy again, but, in my mind, everything had “temporary” stamped on it.

The following year protease inhibitors were introduced as the new wonder drugs.  On a cloudless spring day, I remember sitting numb in the car after leaving my doctor’s office with three prescriptions, including one for a PI called Crixivan. These life-giving medications might have been a joyous reason to celebrate for most, but instead, I was distressed over their prohibitive cost at over $1,000 per month with no promise that medical insurance would bear the brunt of them.

Over several months, the new PI did live up to its hype as my T cells climbed out of the danger zone and the virus became undetectable. Insurance did, indeed, pick up most of the tab. But the numbing anger I felt on that sunny day in the car never subsided. I had become depressed and unfriendly and couldn’t extend even the simplest respect to most anyone crossing my path.

I thought these consuming feelings were because I was having difficulty finding a way to tell my parents about my status, so I entered therapy for the first time. It took quite a long time to dig through the pride, procrastination, fear, and profound sadness associated with the idea of now quite possibly living a normal life span due to PIs. It was safe, somehow, believing I would die at a young age. We sorted through all of my relationships, particularly those with my parents. In fact, HIV itself became secondary to why I lacked personal or professional goals, my nearly sexless relationship, and how I so desperately wanted to rediscover my lost attitudes of joy and kindness.

Over time, such unwanted, practical responsibilities as creating financial security or thinking about an alternative career sifted into my reality. I wanted to own a home rather than rent a space. It became evident that creativity fostered balance. Most importantly, though, a persistent, internal voice loudly proclaimed, “Love!”

I began to understand compassion, and tears filled my eyes regularly as I appreciated my surroundings with the deepest gratitude. It felt okay to care about current events or write letters to editors on passionate issues. I suddenly wanted to be available for my aging parents rather than have them stand over my death bed. I sought ways to be of service in the world rather than expect the world to serve me. Overall, I believe my old attitudes had to die so that I could begin to live.

I finally disclosed my status to my parents, who were extraordinarily supportive, and, today, my sense of self seems unwavering yet fluid, cradled in spiritual discipline. I now take time to decide what I want rather than what I don’t want because it’s much more daring and, indeed, challenging, to declare and commit to new ideals than it is to loosely build my character only through the process of eliminating old and negative beliefs. Slowly, I got used to the idea of living, rather than wondering when or how I would die. Emotional survival is an ongoing process as HIV continues to carve a roller coaster path through my psyche. However, because I chose to change some very rooted perceptions about my place in the world, I know in the sincerest place of my heart that life and love are eternally precious commodities.

Mark Jacobs is a freelance writer living in North Hollywood, California. He has been published in the Los Angeles Times, Out magazine, and other national publications.

July 2004