In 1995 I woke up from routine heart valve surgery with the left side of my body paralyzed from a stroke caused by the surgery itself: A tiny piece of tissue had broken away from the valve, traveled through blood vessels and lodged in my brain, blocking the flow of blood with its essential supply of oxygen to the neurons that controlled movement on my left side. I was 43 years old, married, with two young children.
If I had obediently followed the prescribed role of stroke patient in the world of conventional medicine, I would be an invalid in a wheelchair today. Instead, I am back at work as a medical journalist, paying taxes instead of collecting social security.
I recovered because “adapting” to my disability — which is what the insurance company doctor (who had never met me) told me to do after two months of occupational and physical therapy — was not an acceptable option for me. I didn’t want to buy shoes with Velcro, buttonhole fasteners or devices to hold a tomato steady so I could slice it. I didn’t want to walk with a cane or use a wheelchair in the airport. And I certainly didn’t want to spend valuable recovery time learning to use adaptive devices.
During my recovery, the health providers whom I found most helpful were those who recognized the devastation and despair that I felt as the result of this physical calamity. They saw me not just as a patient, but also as a wife, mother, writer and even amateur musician. In their understanding I found the encouragement, strength and hope that I needed to fight back to recovery.
The doctors I found least helpful were those who saw me not as a whole person, but rather as a “stroke patient:” These included the neurologists who shrugged and said “wait and see” when I told them that they must be wrong: I needed my left arm and I needed to be able to walk; and the heart surgeon who breezed into my hospital room just long enough to say, “Sorry you stroked, but heart-wise you’re fine.”
I quickly learned that while the advances of modern surgery can save your life, the conventional medical system — along with the insurers who pay for it — is not set up for full recovery. The goal of the system was to get me out of the hospital or rehabilitation facility and send me home. What happened after that was up to me. The insurance company doctor (the one who never met me) told me that I had “plateaued,” which meant that while I had made progress in physical and occupational therapy, there would probably be no further improvement. I was at an impasse and additional intervention would be counterproductive (not to mention expensive).
As a patient, it feels as if the health insurers and many doctors want us to accept and “adapt” to our disabilities — whether we are recovering from a heart attack or stroke, suffering from chronic illness or pain or trying to manage the difficulties of growing older. It is easier to prescribe pills and adaptive devices than to help us take responsibility for our bodies and our health.
I chose to fight my way back to recovery, and this is a tough thing to do for those of us who are accustomed to seeing our doctors as omniscient beings who control our health. I learned about methods of healing outside of mainstream conventional medicine,including Traditional Chinese Medicine, chich has used acupuncture for thousands of years to treat stroke patients . Yoga, from the equally ancient Indian Ayurvedic system of medicine, gave me strength, balance and peace of mind. The Alexander Technique — a powerful system of movement education — taught me to use my body with less effort and reduced pain. Pilates exercise coaxed my weakened muscles back to work and craniosacral therapy restored my body’s natural rhythms.
I was fortunate: I had the will, the family support, the research skills and the financial means to pursue unconventional healing methods. Fighting the system is much harder for those who don’t have the money, the knowledge of alternative therapies or the emotional strength to keep up the lonely struggle for recovery. Too often, such people live with pain, disability and despair.
Doctors must understand what illness means in the lives of their patients. They must use their positions, their authority and their words wisely. They have the power to heal, but they also have the potential to destroy hope and, along with it, the chance to recover.
Own Your Health 