Over the last four years, I have listened to hundreds of patient stories as a medical student taking histories. Not all stories are equal in their impact, and some are so profound that one begins to see patients differently. The story of Ray has stayed with me for four years and will, I think, color my experience with every patient.
I first encountered Ray in the dermatology clinic in the Yale Physicians Building. I poked my head in, greeted him, and closed the door. I stood there for what seemed an eternity, mouth agape, as I gawked at the lesions that festered on every inch of his skin. Tumors the size of golf-balls appeared to be in a sort of limbo, not sure whether to remain embedded under the skin or to bud out. “Are you okay?” Ray asked self-effacingly, and I sat down in the chair usually occupied by the patient.
Ray had a severe and untreatable case of neurofibromatosis. The scheduled 15-minute visit turned into a two-hour conversation in which he recounted the endless ways it had changed his life. A normal kid growing up in a normal New Haven family, Ray had hoped to be a photographer running around New York City like the famous Weegee. His dreams faded when bumps the size of marbles began parasitizing his skin during adolescence. The doctors told him, “You have the elephant man’s disease—just bad luck.” Now, as then, there is no cure. The best medicine can do is manage the complications, which is why Ray has had more than 40 surgeries to remove fibromas that had become infected. Fifty years after diagnosis, alone and reclusive, Ray’s otherwise monotonous existence of television and videotapes is interrupted by a call inviting him to come to clinic and meet some students, which he enjoys doing in the hopes of educating us. “I want you all to be good docs,” he continually reminds us.
It is difficult not to have a changed perspective on the doctor-patient relationship, and a greater capacity for empathy, after meeting and talking with Ray. His greatest fear is that others will fear him, out of misplaced anxiety that he might be contagious.
Last summer while shopping at the market and covered from head to toe with a very long raincoat, Ray encountered a new cashier. When she saw him she shrieked, drawing the attention and stares of a crowd of onlookers as Ray pleaded with her to accept his 10-dollar bill. She placed his change on a napkin, and a very nervous Ray dropped the money on the floor. Embarrassed once again, he ran from the store, leaving his groceries and money. “It’s the unforeseeable reaction that I live with on a daily basis,” he says as he stares at the floor. He never looks you in the eye.
Ray affected me and has helped to make me a better doctor. Soon after I met him, I wondered how his story might help other medical students be good docs, too. A film about his life would say it all. After a meeting with Ray and one of his dermatologists, Irwin Braverman, M.D., we all agreed to make a documentary recounting Ray’s battle with this horrible disease. The film would be used to teach medical students and residents the profound impact that disease can have on patient lives, not only physically but socially as well.
With encouragement and direction from mentors at the medical school, I began work on Illness As Experience. The half-hour film took a year to make, with resources and financial support from the school, the Yale Film Studies Department and outside grants. Ray’s story unfolds in interviews with him and Dr. Braverman detailing the pervasive presence of neurofibromatosis in his life. The film is being shown at more than 100 medical schools and residency programs throughout the country as part of their humanities-in-medicine and ethics curricula.
Ray’s altruism towards young doctors, as he shares his life with us in the clinic and on the screen, goes beyond words. I occasionally view the documentary, and it is admittedly an unsettling experience; even the thought of briefly viewing the world through the eyes of a severely disfigured man is a vicarious experience most would rather not have. For many Yale students who meet Ray, however, it is a voyage we rarely forget.