A trio of grim-faced neurologists sat next to my bed in the intensive care unit. “We think you’ve had a stroke,” said one. “We can’t say when or if you’ll recover.” At first, all I felt was disbelief. This was supposed to be a routine surgery, but I’d woken with half my body paralyzed. I was 43 years old, with two children and a busy career as a medical writer. “You don’t understand,” I said. “I need my arm. I need to be able to walk.” I waited, but they shook their heads. “My life is ruined,” I remember saying to my husband. But I also remember something else: the moment I decided to take control of my health. I wouldn’t simply accept what the doctors were telling me–I’d trust my instincts and fight to get better. On my journey, I met other women who had reached the end of the line, medically speaking, but who found their own way forward. Janet McCourt’s “take control” moment came when her doctor told her it was time to think about hospice. For Erica Orloff, it was when Crohn’s disease threatened to leave her incapacitated for a lifetime. We each believed that we could make a difference in our health–and we found the people and therapies to help us. Here are our stories.
“I traded 44 pills a day for a macrobiotic diet”
Erica’s Story One day about 15 years ago, when my first child was a toddler, I collapsed in pain on my living room floor, vomiting black blood. Luckily, a friend was visiting and called an ambulance–otherwise, my doctor told me, I would have bled to death. I have Crohn’s disease, an inflammation of the bowel that can lie dormant for years and then suddenly erupt, causing pain, diarrhea, bleeding, scarring, and severe–sometimes fatal–obstruction of the intestine. Until I collapsed, my symptoms had been uncomfortable but manageable. That day, everything changed. After 3 weeks in the hospital, I came home taking 44 pills a day, including high-dose steroids. One side effect was a condition called steroid myopathy, which caused excruciating joint pain. All I could do was crawl or hobble. I’d gone from being fairly active to having what seemed to be no life at all. I couldn’t even take my daughter, Alexa, to the park. I desperately wanted more children, but every obstetrician I spoke to said it was impossible. “I have no more tricks up my sleeve,” my doctor told me. “I’m sorry–you might want to try a teaching hospital.” Something clicked. I’d always been deferential to doctors–in fact, long ago, when I’d been told my pain was all in my head, I’d accepted it (my diagnosis was delayed for 13 years). Now I was through being intimidated. I did find a teaching hospital and a world-renowned expert in Crohn’s disease. I told him I wanted off the steroids–and he was supportive. He prescribed less-powerful medication with fewer side effects, while I tried a macrobiotic diet and other dietary changes. I also used acupuncture, biofeedback, meditation, and deep-breathing techniques. As I began to feel stronger without the crippling steroids, I renewed my efforts to find an obstetrician who would help me have more children. Today, my husband and I have four children, from age 2 to 17; I have no symptoms and take no meds. I became a writer, and several of my novels feature heroines who are moms in their 40s overcoming health challenges. But in my life right now, there is simply no time to be sick! –As told to Roanne Weisman
“I chose acupuncture and exercise over a wheelchair”
Roanne’s Story “Sorry you stroked, but heartwise, you’re fine.” These were the only words my heart surgeon said to me a few days after an operation to replace a valve in my heart. I have Marfan syndrome, a disorder that affects the connective tissue. Untreated, it can make heart valves work improperly–and can cause enlarging of the aorta and, sometimes, sudden death. The surgery, in 1995, was supposed to be routine. But a bit of tissue in my heart had broken away, traveled through my blood vessels, and lodged in my brain. When I woke, I was unable to move my left arm and leg. With a rigorous program of occupational and physical therapy, I made slow progress. But after a few months, I got a call from the insurance company. Their doctor had reviewed my records; no further recovery was expected, so my policy would soon stop paying for rehab. I should focus on adapting–wear shoes with Velcro instead of laces and use bagel holders for one-handed cutting and a wheelchair for long “walks.” Suddenly, I saw myself at a fork in the road. One way led to accepting that I’d be an invalid for the rest of my life, and the other to fighting my disability. I had to make a choice that day, and I chose the road of fighting back. I didn’t want to reject conventional medicine, but I wanted to see if other therapies might help. I discovered that in traditional Chinese medicine, acupuncture has long been used to treat symptoms of stroke–and that in a Harvard pilot study on people disabled by a stroke, acupuncture helped. I immediately began getting that therapy. I also started going to Pilates classes–and yoga, tai chi, and more–because studies suggested that exercise could push the brain into forming new connections. Within a year, I was walking unaided and handling all the tasks of everyday life. Now, 13 years later, I realize that my health “catastrophe” taught me what I was capable of achieving–a lesson I remember as I write books, accept public-speaking engagements, and show my children that daunting obstacles can be overcome with hard work and determination.
“I Treated Illness Like a Business Problem”
Janet’s Story It was a cold January day 11 years ago when I heard my doctor say it was time to consider hospice. A biopsy had just revealed cancer–called multiple myeloma–that was aggressively invading my bone marrow. What’s more, it had shut down my kidneys, so I would need dialysis four times a week. Finally, I understood what had been causing my bone fractures, weakness, and near-constant vomiting. But medicine couldn’t do much to help me. I couldn’t get standard treatment for my cancer–chemo followed by a bone marrow transplant–because my kidneys couldn’t take the toxic chemicals. And I couldn’t get a transplant to substitute for my failed kidneys, partly because my cancer meant I couldn’t take the anti-rejection drugs. My only remaining option was steroids, which wrecked my stomach and esophagus. To make matters worse, the dialysis left me so exhausted I could barely walk up a flight of stairs, let alone handle the construction company I’d started a couple of years before. I either wanted my life back or I wanted it to be over. At the age of 55, I began preparing myself to die. But a call from my daughter changed everything: She was pregnant. Right then, I decided I was going to live long enough to see my first grandchild. I’ve launched several successful businesses, and I decided to treat this illness as just another management problem to be solved. It was clear that medicine could do no more for me; I’d have to rely on my inner strength. I read everything I could on alternative treatments and tried many of them. But I think the most important thing I did was to record tapes saying that I was getting better. I listened to these tapes nearly 24 hours a day, even in my sleep and during dialysis. After a month, my cancer had gone into remission–much to the surprise of my doctor. Now, I thought, all I needed was a kidney transplant–until my doctor explained that remission didn’t mean cured, and that my cancer would still make a transplant impossible. But I decided I wouldn’t take no for an answer. So when my doctor went on vacation, I seized the moment: I lied to the dialysis nurse, telling her that my doctor had authorized a referral to Massachusetts General Hospital to discuss a kidney transplant. But sure enough, the team there told me I wasn’t eligible. That wasn’t the end of it, though. Struck by my determination, one of the transplant doctors told me they were experimenting with something new: a simultaneous kidney and bone marrow transplant, which might make long-term anti-rejection drugs unnecessary. The hope was that the bone marrow I got from the kidney donor would result in an immune system that was a mix of my own and the donor’s–which wouldn’t see my new organ as “foreign” and reject it. But this had never been tried in a human before. Would I be willing to take the risk? Yes–I had absolutely nothing to lose. The procedure was successful. I am now 65, with a perfectly functioning kidney, and my cancer is undetectable. I have gained five grandchildren and a degree in art and have spent a semester studying painting in Italy. I also volunteer with immigrants and refugees. Coming so close to death taught me that human connections are the most important things in life. –As told to Roanne Weisman
How to Take Control
If you’re faced with a scary diagnosis, the first step is to remember that your doctor is an expert, but he or she works for you. Other moves to make: Get a second opinion In a 2006 study, when breast cancer patients got a second doctor’s review, surgery recommendations changed for a full 50% of the women. A good doctor knows that a request for a second opinion isn’t a comment on his competence, says Harvard cardiologist H. Eugene Lindsey Jr., MD. Keep a recordOutline your history in the calm of your own home and keep it updated. Include symptoms, treatments, and test results–but also their effects on your life. Bring a copy to new providers to help focus the appointment. Ask about alternativesIf you’re interested in complementary remedies, ask your doctor to look into them–chances are, he’ll have to play catch-up. To prevent interactions, inform him of any alternatives you try. Investigate the cutting edge The National Institutes of Health (NIH) runs trials of new treatments for many diseases; even if you end up in the group that gets standard care, you’ll likely be given extra attention. Check the NIH Web site (and ask your doc to do the same): clinicalresearch.nih.gov.
