DR. ALICIA CONILL
People With MS and the Courage to Give
Chapter 2: When Doctor Became Patient
THOSE OF US CHOSEN, in a seemingly random way, by chronic illness also have a choice to make—the choice to live. I made that choice on a damp November day in 1995. Each morning that I struggle from bed to my wheelchair, or each night that leg spasms and pain keep me awake, I choose again.
It should have come as no surprise. Everyone I have ever spoken to about MS, as a physician or as a fellow patient, tells me there are always warning signs. Episodes of discomfort that pass. The activities you start avoiding without realizing it out of fear of triggering those “silly” symptoms. For me, it was an intense dislike of hot weather, occasional blurring of vision, and transient numbness and tingling. Well, certainly the fatigue could be explained. I was training to be a doctor and sleep was a luxury—and not one I indulged in often enough. I had reason to be tired.
I figured I would join an academic clinical practice where I would care for patients and teach students and residents the science, and even more importantly, the art of medicine. My schedule would finally allow for sleep. Even after my dear grandmother was diagnosed with an expanding abdominal aortic aneurysm and needed surgery, from which she developed complications that would result in an almost six-month ICU stay, I continued to believe that modern medicine would prevail in restoring her to good health and I would check in with a daily phone call and occasional weekend visit. Wrong.
Every night I would board a train from Philadelphia to NYC, catnap in a chair next to my grandmother’s bed, and board the 6 A.M. train back to Philly. Then, I began inpatient rounds and outpatient office hours. Admittedly, I held the innocent notion all young doctors share. I thought I was invincible. Wrong again.
After six months, my grandmother died, but not before the first sign surfaced that something was really wrong with me. I had already developed transient blindness in my right eye, which lasted approximately eight weeks before resolving spontaneously, and a persistent numbing and squeezing sensation from my butt and crotch area to my toes. But I convinced myself that the transient blindness was a corneal abrasion and the diffuse numbness a slipped disc.
Looking back, I am of course embarrassed at this admission. I believe I am an excellent diagnostician, but everything changes when doctor becomes patient. Fear and denial overcame all my diagnostic skills. Did I know? Yes, I knew. But, I wasn’t going to be the one to break the news to myself. When the wise and kind neurologist said, “This is multiple sclerosis,” some part of me wasn’t really surprised.
Nine years later, on a crisp fall day, the colors around me vibrant and breathtaking, I accepted a friend’s invitation to a barbecue even though I would only know a handful of people there. Of course people asked. “Alicia, what do you do?” I paused and replied, “I used to be a doctor.” My friend looked at me in dismay and interjected, “You’re still are a doctor!” What my friend didn’t know is that only a week earlier, in a voice lacking emotion, eyes avoiding mine, my neurologist (obviously not the same one who confirmed my diagnosis) told me that I was now totally disabled and could no longer practice my profession.
It was just a routine visit. I expressed my concern about loss of sensation on the tip of each finger, which sometimes interfered with my ability to confidently
perform physical examinations. I had to take extra time to be sure I did not miss a bump, a lump, or alterations in the rhythm and intensity of pulses. I had already cut back on office hours because the symptoms were always worse after long days, and at this point I had been using a three-wheel scooter for several years. Most of my patients were aware of my diagnosis, especially as it affected my legs. This new symptom, however, was invisible to the naked eye and easier to hide from others and deny to myself.
But there was no denial or hiding this time. I took an oath to primum non nocere (first, do no harm) and had always taken that oath very seriously in caring for people who entrusted their lives to me. So, I shared the symptoms with my physician, knowing full well that this would change my life for some time, possibly forever.
Silly me, I thought the neurologist might acknowledge the major loss this represented. No such luck. I received neither healing nor curing nor caring from him during that visit. He just said I should send him any papers I might need to fill out for permanent disability.
Leaving his office, the physical numbness in my legs seemed to spread and surround my entire being. If I could not be a doctor in the way I had been, if I had to close my practice and let go of a patient panel of over three thousand, if I had to hang up my white coat and stethoscope, who was I? The downward spiral had begun.
For a painfully long time, I had no answer. My sense of self was so closely tied to being a physician that I feared I would be nothing, be worth nothing, without it. I had always wanted to heal people. My mother still has my kindergarten report card that says, “Alicia wants to be a doctor.” When I was seven, my parents gave me a nurse’s outfit for Christmas; I was infuriated and said, “I don’t want to be a nurse—I want to be a doctor.”
Many times I had prescribed counseling and medication for patients with clinical depression. I had given numerous talks about how to recognize and treat it. The warning signs were ingrained in my memory as if etched in stone. But I was a patient now and could not even access my own best advice. The descent continued. Accelerating it was the fact that my personal life had started to unravel as well. Truth be told, I came dangerously close to ending my life, but forces came together at just the right time, in just the right way, and led me out of my descent. I chose to live. Only then did I envision the difference I could still make. I would share the lessons learned through my experience as physician and patient.
I had become concerned about doctor burnout and loss of empathy. Empathy has been defined as “your pain in my heart.” It reflects understanding, but means more than understanding in a rational or mental way. It requires an ability to feel, care, and connect on an emotional level. Empathy is a critical component of healing. But it is not exactly emphasized in medical school. In fact, medical residents may find empathy reservoirs dangerously low after the stress and demands of residency. And these are the very people on the frontline of caring for the chronically ill, the disabled, the critically ill, and the dying.
The fact is, most residents are young and have not had any personal experience of illness or physical impairment. They have only viewed illness from the outside looking in. What happens to these young, idealistic men and women? What happens after they take their oath on graduation day and promise to first do no harm? Does our medical education provide any specific interventions during postgraduate training to foster a continued sense of medicine as an art, of communication as a critical diagnostic and therapeutic tool? Can empathy be taught? Those were just a few of the questions I started asking.
In 1998, in an attempt to search for answers, I founded the Conill Institute
for Chronic Illness. Its inaugural project was a program called the Disability Experience,© which would be an experiential seminar lasting up to twenty-six hours. The principle behind experiential learning is that by actually having the experience (even in a controlled setting), the learner will appreciate what it is like to “walk in their shoes” or “to sit in their wheelchair.”
For the Disability Experience,© future doctors and caregivers would be put into wheelchairs for extended periods and assigned simple tasks like getting out of bed or going to the store. Bottle caps would be put in their mouths so they would know what it’s like to try to speak after a stroke. Bungee cords would be wrapped around their legs to immobilize them so they could experience the “feeling” of paralysis.
The pilot was held for fourteen second-year med students.
This seminar is now required for all University of Pennsylvania medical students. It is also a requirement for third-year nursing students at Villanova School of Nursing in Pennsylvania. The program goals include increasing knowledge of the culture, diversity, and challenges of people living with disability as well as understanding the cyclical nature of adaptation to disability or chronic illness. Participants are encouraged to identify their own biases, stereotypes, and assumptions; to educate others; and advocate for those unable to do so for themselves.
At the outset, topics relevant to living with disability are presented in a didactic and interactive way. Pairs are then randomly assigned roles of care-partner or person living with a disability. The physical limitations are reproduced in as realistic a way as possible. Pairs are assigned a series of specific tasks in the “real world” environment, such as going for lunch, using a restroom, and doing some shopping. They are told to observe their physical sensations, thoughts, and feelings. They are asked to observe how their partner behaves as well as reactions of people they encounter.
The impact is palpable in the classroom upon their return. Space does not allow me to summarize the feedback we’ve gotten, but it is safe to say that these learners are changed by the experience. 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.”
We have also adapted this program for other audiences, including corporations conducting diversity training, psychology graduate students, and other allied health professionals.
Many people comment on the courage that I, and others like me, show in the face of chronic illnesses that come into our lives and steal our self-esteem, independence, and in my case, the career I cherished. Am I courageous? Sometimes I am. Other times, I am like the Cowardly Lion in The Wizard of Oz, tightly clenching my tail and using it to wipe tears away.
But now, when people ask, “Alicia, what do you do?” I reply by telling them a bit about who I am, and what I do, knowing that both are not necessarily synonymous, although for some of us fortunate ones they are. I am a physician and a patient. I am an educator. I am a woman who chooses to live and give, perhaps in spite of, and perhaps because of, my journey with multiple sclerosis.
For more information: www.conillinst.org
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