Hi Everyone —
On Thanksgiving day, I came home on a hospital day-pass for the first time since being diagnosed with the rare autoimmune illness called Guillain-Barre Syndrome. (You saying “Huh?” Go here to read my story.) Home was filled with welcome signs and flowers and a very happy dog. Talk about thankfulness!
I have huge appreciation for all the well wishes sent my way via snail mail, email, Facebook and thoughts. Every little bit has helped. Every day I make a little more progress towards normalcy.
Now I’ve been discharged from the nursing-rehab facility. I just spent my first wonderful night at home and have started outpatient therapy. I can do a lot of day-to-day things but don’t have much stamina. Still, I’m walking up stairs, cooking eggs in the kitchen and doing my exercises on the floor. Look at ‘er go! Woohoo!
Although I continue to feel upbeat and motivated about re-gaining my health and strength, I’m also facing the reality that I’ve had a huge and unexpected setback in my music career. I was so excited about putting together my big winter-long “Stay Warm Tour” as well as working out the final touches on my first-ever radio campaign and attending my first NERFA music conference. All the shows I’d worked so hard to book and rehearse this autumn and during the holiday season had to be cancelled. That was really, really hard.
But all is not lost.
I may not be able to travel and perform right now, but I can still ship CDs from home.
If you’ve been thinking about buying or gifting my CDs, now is the perfect time. You’ll give the magic of music … you’ll contribute to my occupational therapy … you’ll warm my hands and my heart.
For those who love holiday sales (like me!): If you order 4 or more CDs, I’ll add an extra CD for FREE. You can tell me which CD you’d like as the extra in the order notes, or via email. The second I get your order, I’ll sign ’em and lovingly pop them in the mail to you and/or to those special someones on your holiday gift list.
Please have a very merry holiday season everyone. Savor the cookies, the neighborhood lights, the people you care for, your own healthful moments.
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…