Biography Magazine Article 
"This article was originally published in Biography Magazine. © 2000. A&E Television Networks. All Rights Reserved."
"I Never Really Understood Until It Happened to Me"
Dr. Alicia Conill Becomes a Patient
By Barbara Burgower Hordern
What happens when a vibrant and popular young doctor develops a chronic disease that leaves her legs useless and fingertips numb?
For Dr. Alicia Conill, the first reaction was deep denial--so deep she bought a house with spiral staircases. Then she lapsed into a suicidal depression. But it was what came next that transformed her life and the lives of countless others: She began teaching able-bodied medical students and health-care workers just how it felt to have a debilitating illness.
It was an idea brilliant in its simplicity: Put future doctors and caregivers in wheelchairs for extended periods and assign them simple tasks like getting out of bed or going to the store. Put a bottle cap in their mouths so they know what it's like to try to speak after a stroke. Wrap a bungee cord around their legs to immobilize them so they experience the "feeling" of paralysis.
"I'd often dreamed of teaching medical students to understand the personal effects of illness," says Conill, now 42, who had a thriving internal medicine practice when, in fall 1988, she was diagnosed with multiple sclerosis. (A disease of the central nervous system. MS interfere with the brain's ability to send and receive messages that control movement.) "I thought I understood what it was like for my patients who were chronically ill. But I never really understood until it happened to me."
The one thing Conill always did know was that she wanted to heal others. Born in Havana, Cuba, on October 22, 1957, she told Biography Magazine that "even in kindergarten, I wanted to be a doctor." In 1960, after Fidel Castro came to power, she fled to New York with her now-divorced mother and maternal grandparents. When Alicia was 6, her mother married Rafael Conill, who later formally adopted the girl. Her parents founded Conill Advertising Associates Inc., which became the nation's most successful Spanish-language advertising agency.
Young Alicia's interest in medicine never wavered. "when I was 7, my parents gave me a nurse's outfit for Christmas," she remembers. "I got incredibly mad at them. I didn't want to be a nurse--I wanted to be a doctor."
Conill got her wish, graduating from Georgetown University in Washington, D.C., and then its medical school in 1983. From there she headed to Mount Sinai Hospital in New York. It was in 1986, while she was serving at Sinai as chief resident in internal medicine, that the first hint of multiple sclerosis appeared: a gray area blocked the 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 now cleared, Conill accepted a job at the prestigious University of Pennsylvania in Philadelphia and began building a practice.
But the following March, Conill's legs suddenly felt numb from the thighs down. When the numbness didn't go away, she elected to have an MRI. "The first MRI was at midnight," recalls her mother. "She knew as soon as she saw the films. The signs of MS were unmistakable."
Conill regained feeling in her legs and went on, dealing with temporary "flare." She became romantically involved with a counselor, who seemed undisturbed by her condition. And, determined that MS would not change her life, she bought a three-story townhouse with spiral staircases.
But the flares occurred more often, and Conill soon progressed 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, so as not to burden those around me." These additional duties included commuting frequently to New York to help care for both her ailing grandmother and father.
But by early 1995 she had to give up her practice and sell her home. Compounding her losses, her father died and she was dumped by her romantic partner.
Feeling helpless, useless, and alone, Conill considered suicide. "I thought my life was not worth living," she recalls, "that if I died, people who loved me would be relieved of the burden of a sad and angry sour."
"Her depression was a normal reaction to a huge loss." Explains Dr. Sankey Williams, chief of general internal medicine at Penn. "She had to find a new life. She handled it gracefully--the way we'd all deal with it if we could."
With medication and counseling, Conill's painful depression lifted. New drugs that can slow the progress f MS renewed her hope. Most important, with her mothers encouragement, Conill used some of the inheritance her father left to found the Conill Institute in Philadelphia, where she could make her dream of teaching compassion come true. In the process, she became a champion of the more than 54 million Americans living with chronic illness.
The Conill Institute is a nonprofit organization designed to help both those with chronic illness and those caring for them. Its centerpiece is the Disability Experience, in which participants are assigned roles as either patients or caregivers and told to stay "in character" for up to 26 hours.
Suddenly they encounter obstacles everywhere. "you're used to doing what you want, when you want." Malaka Jackson, a student playing the role of a disabled person, told the Philadelphia Inquirer, "You're not used to relying on someone else. It's not just one favor you're asking, it's lots of favors. You lose all control."
Students are assigned field trips on which they have to use two rest rooms--one designed for the handicapped and one that's not. They shop at a grocery store to see what they can reach, and they visit a library, where they're instructed to make a photocopy from a wheelchair.
Those playing caregivers learn lessons, as well. Joe Pace completed the program as a second-year medical student. He told Biography Magazine he now understands that "caregivers really need to take care of themselves, as well as their patients." Pace had to help his "wife" bathe, dress, and complete a series of daily injections. After just one frustrating hour in the caregiver role, he parked her in front of the V while he took a shower. "I was so glad to be alone," he says. "Imagine living like this over years and years."
The Disability Experience has proved so successful, the University of Pennsylvania is requiring all its medical students to enroll in the program (each spends time as both caregiver and patient.)
Conill has resumed her teaching duties at Penn and has taken a senior post in the University of Pennsylvania Health Care System, where she develops clinical practice guidelines for the American college of Physician. She has also worked as a consultant to an insurance company, formulating guidelines to help the disabled remain active and employed.
Today, Conill lives in the Philadelphia suburb of Ambler in a home built to accommodate her scooter. She drives a specially equipped van and is able to live independently with the help of two beloved dogs, a maid, and a part-time attendant.
"I feel blessed," she says. "Two-thirds of those with disabilities aren't working, and two-thirds of those would like to be. When people feel productive, they can still 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." •
Barbara burgower Hordern is a Houston-based Freelance Writer.
Multiple Sclerosis
No one knows what causes multiple sclerosis, which literally means "many scars." Healthy nerves are insulated by a fatty substance called myelin, which helps the brain's messages flow smoothly. With MS, myelin breaks down and is replaced by scar tissue, which can distort or block messages, causing temporary or permanent paralysis, numbness or tingling, muscle spasms, and problems with eyes, balance, memory, or speech. Symptoms often come and go, but as more damage is done to the nerves, patients less frequently regain full function of their bodies. B.B.H.
Getting Help
The Conill Institute for Chronic Illness is an excellent resource
for the 54 million Americans with disabilities and their families/caregivers.
Visit its Web site at www.conillinst.org
for links to everything from Alzheimer's to dwarfism to stuttering,
plus wilderness trips for people with and without disabilities. Or
contact the Institute: 3535 Market Street, Suite 4045, Philadelphia,
PA 19104. 215-746-7267. Or email:
The American Self-help Clearinghouse publishes a sourcebook of toll-free numbers for information and resources regarding chronic illness. For ordering information, call 973-625-3037.
The National Organization on Disabilities (NOD) promotes "equal participation in all aspects of life." Fact sheets, publications, and links for all age groups on a broad range of issues (including housing, public transportation, schooling, and employment) can be obtained from: NOD, 910 Sixteenth Street, N.W., Suite 600, Washington, D.C. 20006. 202-293-5960, (TDD) 202-293-5968. Or e-mail: www.nod.org.
Jane Summer