This morning I pushed myself up into a sitting position with my own power. I was shocked and delighted. Progress for sure. I slid along a wooden board to shift into my wheelchair and Stacey, the nurse’s aide, washed my hair for the first time in over a week. Eureka! Those small things… matter.
So many times I’ve recited the mantra “Enjoy each moment – you never know when a curve ball will come your way.” Guess what? Curve ball!
Despite emergency hospitalization, paralysis of my lower body, partial paralysis of my upper body and face and having to postpone / cancel all of my upcoming gigs, I feel incredibly lucky.
On Oct 23rd, having just returned from a wonderful Ohio music tour, I woke up with numbness in my arms and legs, tight muscles, and huge fatigue. A few days later, back spasms. Ouch. Then increasing weakness until my legs were buckling under me when I tried to stand. I got scared. We went to Yale-New Haven Urgent care. The good doctor there sent me right to the Emergency Room. I remember him saying “Time is precious.”
A spinal MRI. Three spinal taps (not the band unfortunately). A fancy shock-the-nerves test called electromyography (EMG). Several neurologists asking me to squeeze, lift, push, pull. Knee reflexes absent. Arm reflexes absent. Nurses and aides guiding me gently to the bathroom … until I can’t walk at all any more. Bedpans. No interest whatsoever in food. Breathing tests every four hours. I need to be turned in bed. Weaker and weaker all over.
I have been diagnosed with a relatively rare and completely random condition called Guillain-Barre Syndrome. It’s pronounced ghee-YA-buh-RAY but I’ve heard it pronounced twenty five different ways.In Guillain-Barre syndrome, your immune system — which usually attacks only foreign material and invading organisms — begins attacking the nerves that carry signals to your brain. In the most common form of Guillain-Barre syndrome, the nerves’ protective covering (myelin sheath) is damaged, and this interferes with the signaling process, causing weakness, numbness or paralysis.
Here’s the good news: I’ve been handed an illness that 80% of the victims recover from completely. Thank Goodness. And I have incredibly loving, helpful support from Jim, my family and friends. So very lucky.
As of now I’m an acute rehab patient at Gaylord Hospital. I’m on the upswing. My nerves are beginning to regenerate, and each day there is notable progress and increased strength. But it will be months or longer for me to regain my body. There’s no way to know exactly how long it will take. I’m going to have to work very hard.
Today, holding on to parallel bars and being spotted by Dan, my fabulous physical therapist, I stood for the first time in two weeks. Like the rusted tin-man in the Wizard of Oz, my first steps were clumsy and felt strangely robotic. I am ecstatic.
There. Now you know. You know why I haven’t replied to email or returned phone calls … why my gig calendar says POSTPONED DUE TO ILLNESS all over it.
We were not sure what effect this paralyzing condition would have on my ability to play my instruments or sing. When I was handed my dulcimer for the first time a few days ago, I thought for a minute … awkwardly formed a few chords … then this is what came out…