Actor Evan Handler was diagnosed by the hospital staff with acute leukemia—and extreme pushiness. He believes his aggressive, persistent style saved his life. Surviving, Cynthia Gorney discovers, isn't about being voted most popular patient.
Evan Handler knew he was going to be trouble the first time he walked into his new hospital room. He wanted to plug in his VCR.
His own VCR—not the hospital's, which was attached to a television that could be reserved in advance except that nobody ever seemed to know where it was. Handler was 24, newly diagnosed with acute myelogenous leukemia, and terrified. He was pretty sure he was going to die before long. He wanted to watch movies. He had the idea from reading he had done that watching humorous movies might help his chance at recovery, and anyway he wanted to watch them when he wanted to watch them, not when somebody in a hospital uniform thought movie-watching time had arrived. "So I brought a VCR with me, but I was told I couldn't plug it in," Handler says. "I was told the electrical outlets were needed for emergency equipment."
Handler wrote a book and performed an off-Broadway piece about his four years in cancer treatment; he played Harry Goldenblatt on Sex and the City, and was rather celebrated, for a time, as an Angry Patient Advocate. His 1996 memoir, Time on Fire: My Comedy of Terrors, is full of ferocious, unsentimental stories about what it's actually like to be a cancer patient. There's an abundance of physical pain in Handler's book ("If you can imagine what it might feel like to a bowl of chocolate pudding if you sucked some of it up through a straw, that's what it feels like to have a bone marrow aspirate"), but his real expertise turned out to be in survival, both physical and psychic, which he accomplished, in some large measure, by being—how else to put this?—pushy.
He declined, for example, to relinquish his VCR. When the nurses left his hospital room, he put the VCR discreetly under his bed, hooked it up to a tiny television friends had brought him, and stuck the plug into the outlet. "I was going to watch Annie Hall," Handler says. "If they needed emergency equipment, they could unplug it."
He closed the door to his hospital room sometimes—even though the staff appeared to disapprove—and taped up a DO NOT DISTURB sign. He figured out how to arrange his IV lines so he could have sex with his girlfriend in the hospital bathroom. He announced that he would not wear hospital gowns, because they made him feel foolish and helpless, and wore his own sweatpants and T-shirts on the ward. "I was capable of more life than the hospital gown symbolized," Handler says. "I felt it was like wearing a concentration camp uniform."
After a harrowing bone marrow transplant, he was finally left cancer-free. And although he knows much has changed since his recovery, both in hospital practice and in the availability of medical information to patients—"The Internet would have made things so much easier, and managed care might very well have killed me," he says—he still has strong ideas about what he would say to a friend just commencing a serious round of medical care. There must be doctors and nurses who to this day remember Evan Handler as the eccentric oncology guerrilla, the guy who invited a psychic healer to his room, reminded nurses that he reacted badly to Benadryl even though that's what they had been told to give him, and forged the doctor's signature in order to get his blood test results from the alternate hospital lab, the one that didn't make him wait all day.
Next: Handler's advice for getting the best medical care
"You just have to keep constant surveillance," he says. "Information is power. The more you know, the better equipped you are." Don't be cowed into silence by uniforms or vague references to "procedure," Handler says; as a patient it's possible to be courteous without being meek. Bring an advocate with you. Make noise. Get over the fear of being regarded as demanding. "Ask for what you want, a hundred percent of the time," he says. "Be willing to hear no. Be willing to negotiate. It sounds simple, but asking for what you want is difficult to do."
Here's how difficult: A while ago, in a doctor's office waiting room, mildly feverish and feeling low, Handler found himself gazing at a receptionist who had just told him to go wait for the doctor in the examining room—because she needed to step away from the desk for a few minutes, and the doctor would want Handler to be ready for him. "Now, I know that in the waiting room there are cushioned chairs and magazines, and it's warmer," Handler says. "And I was supposed to go sit in a hard chair in the cold examining room."
To his astonishment he hesitated, Handler says, and then said he believed he would stay where he was. "I said, 'Doesn't the doctor have legs? Couldn't he walk up here and find me?' She looked at me like I was out of my mind. And I was amazed to find that it was still hard for me, as a somewhat famous patient advocate, having been through everything I'd been through—here was this little young woman... So my main piece of advice is, don't ever give into that shyness. There's no reason not to say, 'You know, that doesn't work for me.' I don't know why that's so difficult to say. But it just has to be overcome."
Cynthia Gorney teaches at the graduate school of journalism, University of California, Berkeley.