Just before Thanksgiving 2019, I was walking with my wife to get a morning coffee at Cafenated – a café in North Berkeley – when I was hit with an insatiable desire for electrolytes. Not a preference I normally have, but my desire had a word and I asked my wife to go into the store while I rested.
I waited for my wonderful partner to come out of the neighborhood CVS while I sat nervously on a low concrete stoop in front of the exit doors. She came out and handed me the Pedialyte, and when I went to twist the plastic cap my muscles misfired wildly.
This was the onset of the first of several seizures that would take me to Alta Bates Hospital and ultimately the University of California San Francisco (UCSF) Neurology ICU, as the doctors at Alta Bates were unsure of what was causing my persistent and progressively-worsening seizures.
My memories of the first week are sparse, as each seizure seemed to wipe out my memory. However, I do remember cracking a joke about them serving me a “seizure (Caesar) salad” for lunch, and also the nurse, who upon learning of my love of the out-of-doors, let me bask in the sun for five minutes during a transfer to the CAT scan wing of the hospital.
A few months after my stabilization and release from the hospital, the UCSF Institute for Human Genetics would come up with a diagnosis that’s treatable and manageable with mega-doses of vitamin B-1 and Biotin, and exceedingly rare: https://www.ncbi.nlm.nih.gov/books/NBK169615/. While backpacking in Kashmir at age 14, I had actually experienced what we now know was another episode of this disease; genetic testing was not as advanced in 1989 and the diagnosis back then was somewhat inconclusive.
I re-entered the world with a can-do attitude mixed with a large dose of stubbornness. About two weeks later, I had my wife drive me to a client’s house so that I could do a 90-minute massage. I had to quit after an hour, as I was tired from standing and she loves deep tissue. She was gracious and kind, and I thanked her profusely for helping me get on my feet again.
When you meet me now, you might clue into something being “off,” as I struggle to speak clearly. My fine motor skills are also impacted, so it’s a good thing Esalen massage fundamentals employ long, broad, rhythmic strokes. Because I’m not shy or ashamed of my disability, I speak openly about it. I’ve had many clients for a decade, or longer, who still get their regular deep tissue sessions with me. They say the massage is the same, wonderful, consistent and creative work it has always been.
It’s interesting to observe clients’ perceptions of my disability. When you’ve given over 10,000 professional massages throughout the West, you’re bound to run into people all over the country who you’ve done bodywork with. Post-seizures, I ran into a client who’s a rabbi. He’d been trying to book a session and was reminded by seeing me in line at a coffee shop. He effusively approached me and I was bowled over by his energy, so I deflected and gave him the “CliffsNotes version” of my medical journey. He listened intently to the short story and then said, “Best of luck, let me know when you get back on your horse again.”
Often, clients who are inspired by receiving my loving touch and good energy will offer to help pack my stuff after the session has concluded. Learning to purely receive is a challenge. Before the seizures, I would always politely decline as their help always seemed to get in the way. Now that my fine motor skills are a challenge, I really love help and graciously accept offers to assist in packing.
I refer to the disorder prominently on my site because many clients shop for massage based on image, and for some getting a massage from a disabled human is not their image of a healing session. I have lost a couple of clients in this manner. That’s quite alright; there are no “greatest therapists,” just the ones you resonate with.
Through my brushes with death, I’ve developed a profound peace and acceptance of severe illness. It certainly has helped me remain grounded with cancer and HIV-positive clients. I feel like my understanding of disease, life and healing has only deepened with the latest episode.
My neurology has quieted my mind significantly, and one of the exercises I do to pass the time is observe how people interact with my disability. It is truly fascinating and provides great grist to mull over.