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ADVOCACY
by Susan Markisz
Following the birth of my daughter in December 1984, I experienced life-threatening complications, requiring emergency surgery. Within a few hours, I was still alive, but very sick and my doctor told me I would need several units of blood, or it would be months before I would be able to take care of my children.
When I hesitated to sign the consent form, expressing concern about the safety of blood transfusions, the doctors and nurses reassured me by saying, "Our blood supply is safe, we test for hepatitis." I had been reading the papers and I was not concerned about hepatitis. I was concerned about contracting AIDS, a disease for which until that moment, I had felt little personal concern or alarm, but which was claiming lives around me by the thousands. A few years later, when my immune system started acting strangely, I was terrified. I was unable to throw off a simple head cold and antibiotics were of no help for the lingering infections that plagued me.
I ignored warning signs that something was amiss in my body, until one day I discovered a lump in my breast, and a large one at that. At the age of 36 I was diagnosed, not with AIDS, as I had feared, but with breast cancer, requiring a mastectomy and chemotherapy. Now, 12 years later, I am still cancer free, if not an emotional wreck whenever I have to go to the doctor.
Breast cancer catapulted me into a world for which I was totally unprepared, a world where the big "C" was actually a catch-word for the bigger "M" for mortality, an issue which affects AIDS and cancer patients alike. My breast cancer advocacy took me to Washington DC where I marched to raise awareness of the disease, and more money for research. I did autobiographical work and my photographs were published and exhibited throughout the world and in Congress.
Like AIDS activists, I became an advocate for my disease. As my body resumed a more normal shape, minus a breast, and my hair began to grow back to its natural state, now a little more gray, I embarked on a series of self portraits to document the emotional ramifications of a breast cancer diagnosis. Still feeling the surge of adrenaline, I figured I'd show the world that "Hey I beat the disease and there is a world full of beauty beyond breast cancer." When I printed the pictures, it was like seeing myself for the first time. I didn't see the world-full-of-beauty part, only something very real which had changed my world, and lots of anger.
The thing is, I wasn't simply angry with a few select people. Since no one could tell me how or why I got breast cancer. I was angry at the world at large, at God, at researchers and doctors who had failed to determine why 185,000 women are diagnosed every year in this country alone and why 46,000 American women continue to die every year of the disease. In my search for answers, I looked to a healthier diet, threw out suspicious pots and pans and tried to rid myself of stress on the chance these endeavors might result in a lifetime without recurrence. Selfishly, I was even angry at AIDS activists (and therefore AIDS patients) who were successful at getting a bigger piece of the funding pie, but who were nonetheless dying in huge numbers for the very same reasons that I was angry: no cause, no cure, no answers. Anger is not an uncommon response to illness but my misdirected anger told me volumes about my perceived ability to be caring and empathetic.
Illness is a funny thing. Besides its metaphorical---and life and death---significance, ironically, it also has the power to heal. I photographed other women struggling with breast cancer, and I understood the necessity of empathy and compassion in coping with disease. People have a strange way of reacting to illnesses too frightening to comprehend. Suddenly everyone was an expert, but without the M.D. When people randomly suggested my disease may have been caused by my morning cup of java, not enough exercise or roughage in my diet, too much stress in my life, I thought: "yeah, sure, easy for you to say on the healthy side of the fence, let's blame the victim."
When someone once told me, as I bemoaned our annual $18,000 health insurance premium, that she had little sympathy for AIDS and cancer patients, who were driving up her own health insurance costs, I was stunned and amazed at her arrogance and lack of compassion. But it occurred to me that perhaps my own capacity for empathy was limited by my own personal experiences. When one of my photographs was censored in Congress for "unsuitability for viewing by the general public" I decided it was time to start looking at the bigger picture. Dying IS unsuitable. Period
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Through photojournalism and my own search for answers, I have been fortunate to know people whose hearts are larger than life, people whose capacity for love and compassion extend to people in circumstances beyond their control, regardless of whether the circumstances are AIDS, cancer, cerebral palsy, aging or disability. I have met extraordinary people like Father Dan Egan, the noted "Junkie Priest," whose name was bequeathed to him many years ago by an intern frustrated at not being able to insert an I.V. line into a patient that he had brought to the hospital for treatment for a drug overdose. When Father Egan urged him to try another vein, he cynically asked him: "Who are you, a junkie priest?" |
Father Egan's life vocation was to
work with drug addicts; he founded several homes for the treatment for narcotics
and alcohol addiction and he was a pastoral minister for terminally ill AIDS
patients. Every Sunday he said Mass in the small basement of the Highbridge
Woodycrest Center, near Yankee Stadium in the Bronx. On a good day, Father Dan
Egan said he was lucky to get 10 people to attend Mass but on the Sunday I visited
with him, several years ago, fourteen people were in the TV room transformed
into sacristy, finding solace in the prayers and in Father Egan's compassionate
words. He once described his work at Highbridge Woodycrest as his last battlefield,
ironically, helping others with their own last battles. Father Egan, twice a
cancer survivor, had an understanding of mortality that allowed him to embrace
people struggling with life and death. At the age of 86, Father Egan died early
last summer, leaving Highbridge Woodycrest without a pastoral minister with
the same personal and compassionate involvement that he brought to his patients.
One of the folks there said recently, "you just can't replace a person like
that."
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Out of respect for the privacy of the patients, I was asked not to
photograph their faces. Some people were too sick to even sit up. |
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Susan B. Markisz
May 25, 2001
