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Suicide.

It’s certainly not something you consider lightly. Hilary Swank’s character, Maggie, went through with it in Clint Eastwood’s movie Million Dollar Baby and created a controversy.

Suicide.

Dr. Alicia M. Conill considered it, but didn’t go over the brink. You could attribute that partly to a heritage of being a “revolutionary” and to being a faculty member of the University of Pennsylvania School of Medicine.

Dr. Conill has Multiple Sclerosis (MS); she emphasizes her suicidal depression didn’t involve having someone assist her, as in the movie. She recalls, “No, I don’t think I would ask anyone to do that because they would have to live with second guessing and guilt about their action—not to mention possible legal consequences. I believe strongly in an individual’s right to self-determination and a woman’s right to choose. Similarly, I would favor counseling and other options to consider.”

Rx for empathy
What happens when a vibrant and popular young doctor develops MS? Dr. Conill’s first reaction was deep denial, suicidal depression, and later teaching medical students and healthcare workers how it feels to be “dis-abled.” She developed a curriculum to train medical students in one of their most pertinent skills: to be empathetic. She states, “I'd often dreamed of teaching medical students to understand the personal effects of illness.” At age 45, when she was diagnosed, she had a thriving internal medicine practice. “I thought I understood what it was like for my patients. I never really understood until it happened to me.”
 
Dr. Conill (pronounced Kah-NEEL) discovered a way to renew her career with a prescription for empathy and personal experience. She and her staff put future doctors and caregivers in wheelchairs and assigned “simple tasks, like getting out of bed or going to the store,”.Or they wrap a bungee cord around the legs of their students so that they might more realistically “experience” paralysis.
 
For her work, she won the 1997 National Multiple Sclerosis Society's Achievement Award. Her Conill Institute is an affiliate of the Dept. of Behavioral Health of the University of Pennsylvania Health System, and it was established in memory of her father, Rafael, who, with his wife, left Cuba during the Cuba revolution.  They launched a marketing career serving the U.S. Hispanic community.

Incredibly mad
A native of Cuba, born Oct. 22, 1957, Dr. Conill speaks fluent Spanish, is a trustee of the national MS society, and has published several articles. Her institute (215-746-7267  contact@conillinst.org) is a 501(c) (3) tax-exempt, educational and charitable organization under U.S. tax code. It develops educational programs to help patients, families, care partners, and employers “deal more effectively with chronic illness and disability.”

“Even in kindergarten I wanted to be a doctor,” she recalls. After Castro seized power, she fled to New York with her then-divorced mother and maternal grandparents. When she was 6, her mother married Rafael Conill, who adopted her. "When I was seven, my parents gave me a nurse's outfit for Christmas," she remembers. “I got incredibly mad at them. I wanted to be a doctor.” She graduated from Georgetown University, and then its medical school in 1983. At Mt. Sinai Hospital in New York City in 1986, when she was chief resident in internal medicine, the first hint of MS appeared as a gray area blocking vision in her right eye.

“I suspected a brain tumor and was relieved it was only optic neuritis,” she says. “I knew about half of those with optic neuritis go on to have MS, but I was much happier imagining I had a bad sinus infection.” In July 1987, her vision cleared; she joined Penn and began building a practice. In March 1988, suddenly her legs felt numb from the thighs down. She had an MRI and knew it was MS when she saw the films. She regained feeling in her legs, however, and dealt with temporary “flares” as she became involved romantically with a counselor. She also bought a three-story townhouse with spiral staircases. The flares occurred more often, and she went from cane to walker to wheelchair to scooter. “The sicker I got, the more stubborn I became,” she admits. “I took on more responsibilities and hid my fears.”

Disability Experience
She commuted to New York to help care for her ailing grandmother and father. In early 1995, she gave up her practice and sold her home. Her father died after a long struggle with Alzheimer's disease and her romantic partner left. She considered suicide: “If I died,” I sometimes thought, “people who love me would be relieved of the burden of a sad and angry sourpuss.” With medication and counseling, her depression lifted. With her mother’s encouragement, she used the inheritance from her father to found the Conill Institute. She resumed teaching at Penn and took a senior post in Penn’s Health Care System, where she develops clinical practice guidelines for the American College of Physicians. She lives in a home built to accommodate her scooter, and drives a specially-equipped van. She is able to live independently with the help of two beloved dogs, a maid, and a part-time attendant.

 “I didn’t appreciate the effort daily activities require, the isolation one feels, the stresses it puts on family and friends, or the losses that force you to redefine who you are and what you do. This is why I designed the program.”

Her disability experience has been adapted for all medical students at Penn, all senior nursing students at Villanova University, all graduate students in psychology and in social service at Penn, staff of service organizations including the Cerebral Palsy Association, the National Multiple Sclerosis Society, and many others, plus corporations as part of diversity training. She teaches students to “talk to patients at eye level. Address patients, not care partners, [but] because care partners have a different perspective, they can provide additional information that you might miss in talking [only] to patients. Does your office have wheelchair ramps? Can someone in a wheelchair use your bathroom? Evaluate the whole patient, and care, even if you can't cure.”

“Profession I Loved”
Dr. Conill admitted it “wasn’t until I [was] facing repeated experiences in the role of patient—when my body seemed to betray me and when I needed to relinquish control and ask for help with tasks that even a child could perform—that my role in a profession I loved was redefined.”

Dr. Conill recalled a day having “one last patient to see before I could leave the hospital and enjoy the sunshine. I walked into the patient room and saw a woman sitting on the edge of her bed. Although her shades were drawn, she had a big smile that lit up the room. The nurse had mentioned that her son had come to visit earlier that day. I began to ask questions and noticed that although I was asking the questions, I wasn’t waiting very long for the answers. It was kind of a monologue. -At one point, she looked me in the eye as I stood leaning on her bed rail, and said in a firm voice, ’Sit down, doctor, this is my story, not your story.’ I sat down and learned one of my first and most important lessons in empathy.”

She maintains that when doctors interrupt or ask leading questions, a significant part of the patient's story remains untold. “Listen, he or she is telling you the diagnosis, ” she added. “If you make assumptions and fill in the blanks, valuable clues can be overlooked. Very frequently, it is the taboo subjects such as drinking, sex, gambling, and so forth that are left out of the initial story. Trust between patient and physician will build in time. It is only after trust and time that a complete story can emerge. Yet another way we teach how to empathize.”

“I feel blessed,” she asserts. “When people feel productive, they feel whole. Companies need to understand this, and I hope to work with more of them. After all, any one of us could become disabled at a moment's notice.”

As Abraham Lincoln said, “It’s not the years in your life that count, it’s the life in your years.”

In his wheelchair, Jacksonville, FL resident Herb Drill heads Able Me & Associates. His e-mail address is
herbdrill@notaccessible.com.