October / November 1994
Checking In: Love Matters
by Aileen Getty
Aileen Getty is often described as daughter of oil tycoon J. Paul Getty Jr. or mother to Elizabeth Taylor's grandchildren. But after the thirtysomething heiress came out as HIV positive in the pages of Vanity Fair, she has redefined herself by her accomplishments against the epidemic: She founded the Aileen Getty Homes for Women with AIDS, volunteers regularly at service organizations and was recently commended by Los Angeles Mayor Richard Riordan for her tireless activism.
Nine years of fighting HIV has taught me that medical treatment is far more complex than simply following doctor's orders. It involves trial and error, swallowing handfuls of pills and powders, suffering through injections, transfusions and looking for comfort in pharmaceutical inspirations and delusions.
Real medical treatment is not something that a physician does to a patient. A treatment regimen is something borne of a mutual exploration by doctor and patient. It is a middle path that weds appropriate medical intervention with a patient's sensibilities, concerns and lifestyle. This collaboration transforms a physician from a tyrant issuing decrees to a guardian angel extending care.
My guardian angel is the acclaimed Dr. Thomas Magee, whose cutting-edge practice and aggressive, attentive, loving and diligent devotion to my well-being has given me time when time was running out. Tom is the first doctor to listen to and believe my health concerns. Tom respects me enough to confront me and hold up a mirror: Sometimes the reflection is smooth and I'm full of love and life; other times, however, the mirror is cracked and I become irrational, confused by the contradictions of treating this disease. It is during these times that Tom helps me sweep up the broken glass and start anew.
I take 68 different pills a day and my regimen changes on a weekly basis. I have the great fortune of having a home health care worker, Nelson. He has a full-time job keeping track of drug changes, doses and refills -- and coercing me into swallowing them three times a day.
There are times when I physically can't swallow my pills and I instinctively know I have exceeded my toxicity level. Yet, it feels so taboo to question your treatment and trust your instincts.
Thinking about the social, political, economic and global role of AIDS actually helps me put up with my treatment: I know I'm not singled out. This gives relevance to my life and to my struggle against AIDS. As soon as I take a step back from my day-to-day life, I realize the epidemic is a fascinating chapter of history to be a part of. AIDS will always be a historical marker and I am not a victim of HIV but part of a shift in the planet's history.
Drugs and theory keep me going but the most critical element of my treatment -- and my survival -- is to be needed and to love and be loved. Of course, humor (spasmodic laughter), along with prayer and public activism, work wonders for my health. Forgiveness, frolicking, teasing, losing yourself in foolishness and gratitude for being graced with the gift of life -- no matter how long or short -- nicely complements my recommended medical treatment.
But no matter how effective my medicine is, if I had not been bestowed with the great love of my sons, Caleb and Andrew, I would not be alive today. Their love sustains my belief that when you think you have gone as far as you can, trust that you will wear out many more shoes walking even farther.
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