The other day, an old graduate school friend and I got together to rehash our old lives and new experiences, and one of the first things he said when he saw me was, “Those red marks on your face remind me of Kaposi’s Sarcoma.” I was instantly stopped — “Kaposi’s Sarcoma” was a phrase I hadn’t heard in over a decade — and when I quickly explained the marks on my face were actually pinches of frostbite from the dermatologist to remove some overactive sebaceous gland residue, he smiled with relief. As an older Gay man, my friend knew lesions that look like that have traditionally indicated a dire diagnosis.
My friend was right to be concerned. Lesions like Kaposi’s Sarcoma were, not too long ago, the mark of a death sentence from HIV/AIDS. The lesions were instantly identifiable, and often pocked the nose, face and chest and mouth — and tended to especially brand Gay men with a new “mark of Cain” — in that they were infectious and ill and, in some hateful, chaotic, circles, deserving of community expulsion and shunning from the village like lepers in antiquity.
Here’s the National Library of Medicine’s definition of Kaposi’s Sarcoma from the National Institute of Health website:
Kaposi’s sarcoma is a cancer that causes patches of abnormal tissue to grow under the skin, in the lining of the mouth, nose, and throat or in other organs. The patches are usually red or purple and are made of cancer cells and blood cells. The red and purple patches often cause no symptoms, though they may be painful. If the cancer spreads to the digestive tract or lungs, bleeding can result. Lung tumors can make breathing hard.
Before the HIV/AIDS epidemic, KS usually developed slowly. In HIV/AIDS patients, though, the disease moves quickly. Treatment depends on where the lesions are and how bad they are. Treatment for HIV itself can shrink the lesions. However, treating KS does not improve survival from HIV/AIDS itself.
I was riveted back to a moment during my graduate school years when Bernie Jacobs, then the head of the Shubert Organization, told me a story about the famous Broadway musical director Michael Bennett. Michael was best known for directing “A Chorus Line” and “Dreamgirls” and one day he stopped in unannounced to see his good friend, and producer, and theatre owner, Bernie.
Michael told Bernie he needed to show him something and he steered Bernie out of his office and into a side storage room at the Shubert Theatre. Michael closed the door and lifted his shirt and showed Bernie a bunch of purple lesions on his chest.
“What’s wrong? What are those?” Bernie asked.
Michael said, “They’re lesions from Kaposi’s Sarcoma. I’m sick, Bernie. I’m not sure how long I have to live. The doctors tell me I have some sort of cancer.”
Bernie nodded and Michael lowered his shirt. Bernie took his hand, and together they silently stood there, still in the storage room, with nothing left to say because nothing could ever be said or done to make things right again. Michael Bennet died a few months later at the age of 44 from lymphoma brought on by complications from the AIDS virus.
Nobody really knew much about HIV/AIDS back then. All we knew was that too many of our friends were dying and those ugly, awful, lesions were a visual indicator that something really bad was active and in force.
Unfortunately, by the time the lesions began to show, few people ever recovered enough to continue living. Those marks became terrifying living tombstones. The world lost an entire generation of actors and musicians and creative minds to the scourge of the AIDS epidemic and, sometimes, I wonder if all that suffering and dying was all for naught. Fortunately, through the incredible advancement of medicine — HIV/AIDS and that awful Kaposi’s Sarcoma — are now better managed than they ever were before the outbreak.
When you hear stories today of young Gay men “riding bareback” — having sex without a condom — and their rationale for that deadly danger is if they ever get infected with HIV, there will be a cure before it becomes full-blown AIDS, you have to sit and shake your head and wonder at the incredible foolishness of the young mind where life is cheap and the body lives forever and history means nothing.
We need to remember the ravages of Kaposi’s Sarcoma, and we need to remember the example of Michael Bennett who faced the end of his young life by sharing his diagnosis and dismay with a good friend who could do nothing to help him in the end but to hold his hand.
(UPDATE: June 5, 2012 — We are delighted that this article was featured on WordPress.com’s Freshly Pressed.)