IntroductionThis book is about a global health epidemic that threatens to affect each and every one of us. However, the seeds for this book were sown in my own health crisis. Like 23.5 million other Americans, I suffer from autoimmune disease, and it has ravaged my life, placing before me the greatest obstacles I have ever known. Pages of this book were written during different stays in the small white hospital rooms of Johns Hopkins Hospital, and many chapters were drafted during long bedridden months at home.The greatest of these challenges began one fine spring afternoon as I was celebrating "Carpet Day" with my daughter. Carpet Day is our own personal mother-child holiday, celebrated only by us. On the first great spring day we take an old carpet and unroll it on our suburban drive.
We bring pillows, chalk, snacks, and lemonade and lie there, reading and chatting, pretending it's the beach for a whole afternoon. On Carpet Day, you can almost hear the seagulls and feel the breeze from the ocean waves that we still won't visit for months. That day, we brought our golden retriever puppy outside with us. He saw a squirrel, and off he went. I bounded after him, or tried to, only to find that my left leg wouldn't follow my right. I hurtled headlong into the grass.Over the next seventy-two hours, my left leg, then my right, then both arms lost all muscle control as my body underwent what was -- for me -- the all-too-familiar creeping paralysis of Guillain-Barre syndrome, an autoimmune illness in which the nerve's myelin sheaths are destroyed by the body's own immune system.Guillain-Barre syndrome, or GBS, usually attacks a month or so after a patient has had a common viral or bacterial infection.
Just three weeks earlier, I had had a stomach bug. My body's immune fighter cells had mounted a war to eliminate those germs, but once they'd achieved that goal, instead of ceasing their attack they turned on my own body -- in a deadly game of self-sabotage. With Guillain-Barre, the immune system gets its wires dangerously crossed and while trying to fight off the infectious agent also damages the myelin sheaths that wrap around all of our nerves like a protective insulation. The damage is so rapid that a patient's myelin sheaths and the axonal nerves they protect can be methodically and painfully stripped away -- leaving them entirely paralyzed within weeks, or even days.It was the second time in four years that I had been paralyzed with GBS. Once before, in the spring of 2001, when my son was six and my daughter two, I had developed this same bizarre and devastating disease after a stomach bug. In 2001, physicians at the local emergency room confidently misdiagnosed my leg weakness and back pain as a back injury and prescribed bed rest. But instead of improving with rest, I lost nerve and muscle control in my legs by steady degrees over a period of nearly two weeks.
One day I could stand on my toes, a few days later I couldn't quite manage it. A few days after that I couldn't flex my feet. A week later, I would stand up and try not to crash into the wall, but suddenly the wall would be there to greet me.A day or two later, I attempted to get to my two-year-old after she bloodied her toe by stubbing it on the leg of my dresser, but I couldn't make it there, even on my knees. The communiques my brain sent to my body to feel the floor beneath my feet simply didn't connect.One afternoon my son, then six, tried to rouse me by showing me how competent he'd become overnight at tying his shoes, as if by some magical power he could banish his mom's bizarre inability to budge from bed."Look, Mom!" he called to me from downstairs, near the front door where we kept our shoes. "I tied my shoes! On myown!" There was a moment's pause, and then -- making a decision to ignore the no-shoes-in-the-house rule -- he clambered up the stairs to show me his handiwork, pride w.