Thursday, October 12, 2017
I was a rich yuppie, an Emmy nominee, a brisk walker, and a yogini, plus a prolific songwriter and speechwriter. My sunny Santa Barbara home had five sets of French doors and three fireplaces, and I never saw a doctor except for annual checkups and flu shots. Then in 2015 I was diagnosed with a rare disease called chronic regional pain syndrome (CRPS [also known as complex regional pain syndrome]). I could no longer walk, drive a car, bathe, cook, or even go to the bathroom unassisted.
CRPS attacks the hands and feet and spreads like a tsunami throughout the body. There is no cure. I was the CEO of two successful businesses, but as the illness progressed, the pain in my foot was so intense I could no longer do the creative work needed to make my clients happy. My mid-six-figure income plummeted to a few hundred dollars a month from Social Security.
I don’t have a family, and writing by myself at home is not a way to make friends, so I was totally alone. I took cabs to see every “ist” in town — orthopedist, podiatrist, physical therapist, and past-life regressionist. I called psychologists who were full, but referred me to therapists who were not taking new patients, who referred me to clinics with year-long waiting lists. Finally, there was an opening at a family-service agency. But the psychologist there, who had failed in musical comedy, told me to stop living in denial, get a wheelchair, and accept the fact that I would never walk again and that I’d be living with debilitating pain.
I contacted agencies to help with housekeeping, shopping, etc., but they wanted $30 an hour (four-hour minimum), so I placed Craigslist ads, which were answered by a parade of unemployables named Samantha, Fungus IV, Justin, and Dirt, all of whom gave "flakey" a bad name.
Meanwhile, over a period of 18 months, I lost my home and used up my retirement and most of my will to live. Suicide runs in my family; my father and two teenage cousins hanged themselves. For 556 days, I lay in a dark, vapid room, sobbing all day and searching online for ways to exit this excruciating world.
But lots of kind people were praying for me: a nun, a cantor, a music producer from Malibu’s Self-Realization Fellowship, and Lauren, a UCSB student I found on Craigslist. Every night I called Silent Unity’s toll-free prayer number.
And 323 days later, I got my miracle. An old friend I hadn’t seen since we took bat mitzvah lessons together called to wish me happy birthday. After hearing about my situation, she paid Lauren to drive me to Cedars-Sinai Medical Center in Los Angeles.
Dr. Howard Rosner, director of the pain clinic there, said that CRPS was an incorrect diagnosis. What I was actually suffering from was tarsal tunnel syndrome. (It’s like carpal tunnel, except affecting the ankle, not the wrist.) Dr. David Thordarson, the world-class surgeon, confirmed Rosner’s diagnosis and said the odds of him curing me were two out of three.
Lauren liked those odds. On the way home from L.A., we stopped for strawberry Twizzlers and parked under a budding jacaranda tree. Lauren said when it was in full bloom, I would be, too. I booked the surgery, but found out that although I had Medicare and good supplemental insurance, nothing covered my 10-day post-op stay in rehab. I smashed all my dishes with a hammer and was about to cancel the surgery when Ericka Dixon, my psychotherapist at Cottage Rehabilitation Hospital, hooked me up with The Cecilia Fund, a nonprofit that gives grants for medical and dental expenses to low-income Santa Barbara residents. It paid for my 10 days in rehab, which literally saved my life.
Now, nine months after surgery, I am back to me again. I still cry every time I sit in the driver’s seat of my car and push the ignition button. I’m writing love songs and speeches again, and have moved out of the dungeon where I was dying into a new house with eight skylights full of promises. Thanks to The Cecilia Fund, I made it home.