Of all the sports available to us during my grade school years, I most enjoyed playing basketball. I wasn’t good at it, but I had a tall and lanky body, so I was useful as the center. Some team captains even picked me first during the tense boyhood ritual of â€œchoosing sides.” It boosted my ego.
My job as center was simple – wave my gawky arms in the face of the opposition until someone fouled me. Then I would strut up to the foul line, dribble once or twice, and throw the ball into the basket for a point. It sounded easier than it was to do.
One afternoon, I stood at the foul line, bouncing the ball, sweat soaking through my knee-high white crew socks, readying the shot, when I couldn’t fully extend the fingers of my right hand. My hand opened only to a 75% angle, so when I tossed the ball upwards, it spun like a planet flying out of gravitational orbit.
When I showed this to my parents, they assumed I had sprained my hand. I received the typical lecture about â€œbeing carefulâ€ when playing rough sports, as if my participation in my Hebrew Schoolâ€™s basketball team was the same as playing left tackle with the Dallas Cowboys.
When my hand didnâ€™t heal, I heard whispering in my parentsâ€™ room at night. One afternoon, my parents took me from school early and we traveled to Long Island Jewish Hospital by bus. I found myself flat on a neurology department table while a gray-haired doctor put electrodes on my head and stuck me with thin, electrically charged needles. He said I should tighten my muscles, then he twisted the needles in a circular motion into my body, as if searching for hidden treasure in the sand. Next to me stood an aquamarine metal box that reminded me of a Geiger counter I had seen in an episode of the Twilight Zone. It screamed with noisy static depending on the angle of the needle. The pain shot through my body, but I stopped myself from crying. After the test, my parents took me to Baskin-Robbins for Rocky Road ice cream.
My father was a funny and compassionate man, but born to that stoic generation of fathers that did their duty, expressed their love, but never shared their personal lives with their children. I knew nothing about my father’s childhood, his time during the Korean War, or even his job as a physical therapist. He didn’t imagine it would interest me.
Twenty-five years earlier, my grandmother brought my father to a neurologist in Brooklyn to take the same painful tests. His weakness affected his neck and chin rather than his hand. The doctors were baffled by it. It didn’t match any neurological diseases known at the time, such as muscular dystrophy. My grandmother, not wanting him to take any more tests, told him to just â€œlive with it and forget it.â€ My father, the oldest of three sons, and close to his mother, took her advice. He then ignored his disorder for decades, not even telling my mother about the condition before they were married.
While eating our Rocky Road at Baskin-Robbins that day, my father filled me in with vague information about the â€œsmallâ€ muscle condition that affected both of us in different ways. I had an unknown weakness in my hand; he had one in his neck and chin.
â€œLive with it, and forget it,â€ he said, repeating the advice of his mother. â€œItâ€™s better than getting prodded with those needles all your life.â€
I wasnâ€™t going to argue with that.
Even at that age, I knew my father avoided reality. By ignoring his ailment, he believed no one would notice it. Everyone did. As the years flew by, his muscle weakness got worse. When my father grew tired, he would put his fist under his chin to hold up his neck. Friends asked questions which I avoided, wanting everything to appear “normal.” Two bullies teased me about my father, saying he looked like he had a perpetual toothache. When a doctor suggested that my father wear a neck brace, he was too proud to wear it in public, certain no one noticed. I didnâ€™t have the heart to tell him the truth.
Iâ€™m ashamed to write this publicly, but I became embarrassed by my fatherâ€™s mysterious muscle condition, and angry that he deluded himself about it. Why didn’t he try to fix it? More troubling was the inevitable conclusion – this was going to be ME when Iâ€™m his age. I imagined my hand getting weaker and my neck collapsing, and by adulthood, I would look like the Elephant Man. I attempted to follow the path of “live with it and forget about it,” but I was never able to forget about it. I exerted years of energy into hiding my shame from others. I wouldnâ€™t let anyone see me weak or abnormal.
In high school, I taught myself to type by pointing and pecking. In college, I used chopsticks with my left hand. When a woman thought I was gay because I held a wine glass effeminately, I never held my wine glass in that hand again. Most people never noticed or cared much, but I always feared it. If they did, men would find me weak and exploit me. Women would find me monstrous and reject me. Employers wouldnâ€™t hire me, especially for production jobs in Hollywood. Even when thriving at school and work, I worried how people would respond if they discovered the truth.
If there is a hero in this story, it’s my ex-wife, Sophia. After dating for two months, I told her about my weakness. She wasn’t surprised or scared by it, but confused by my lack of knowledge. She made it her personal project to get to the bottom of the mystery.
After extensive amount of research and calling, she found two specialists who dealt with obscure neurological diseases. My case was so unusual, two hospitals, the Mayo Clinic and UC Davis, started a bidding war for me as their research subject. Free airfare, hotel, and breakfast buffet! One doctor in Minnesota, Dr. Engels, had identified a disorder that fit my weakness. Sophia dragged me to take another of those needle tests, now known as an Electromyography (EMG). Sophia lovingly held my foot as they poked my body with needles. I had a biopsy that confirmed the diagnosis. My condition was slow-channel congenital myasthenic syndrome (CMS), an inherited neuromuscular disorder caused by a defect at the neuromuscular junction.
Slow-channel myasthenic syndrome is rare, about 800 cases of it in the country, all inherited through family, many of them either Eastern European Jews or French Canadians. The â€œslowâ€ in slow-channel describes the closing speed of the nerve junction. In a normal action, the nerves send pulses through the body, and then the junctions close. With a myasthenic syndrome, the nerve junctions close too slowly, and chemicals leak into the muscles, causing atrophy. The severity is different for each individual. My weakness was in the extension of my right fingers.
Sophia also wanted to understand the family component to the disorder, so she pushed my father to get tested again, much to his dismay. She didnâ€™t stop there. Sophia contacted my two uncles and a male cousin, questioning them like Sherlock Holmes. She discovered that each male member of my immediate family had a muscle weakness somewhere on the body, in the leg, neck, back, or toes. We had a common inherited syndrome, but no one knew it because no one confided in one another. We were the type of family that kept secrets. It took an outsider, Sophia, to bring us together to deal with our health. My grandmotherâ€™s advice to â€œlive with it and forget itâ€ created an atmosphere of silence and avoidance for three generations. Sophia prompted every male family member to get tested. We discovered that we inherited this syndrome from my grandmother herself. The doctors at Mayo Clinic and UC Davis wrote a paper about us.
There was some good news. Dr. Engels found a common prescription drug that stopped, or at least slowed, the leakage into the muscles by speeding up the closing at the junction. It was Prozac. For the last fifteen years, I have been taking 40-60mg of Prozac every day, not for depression or anxiety, but for the slow-channel disorder. My hand hasn’t gotten better, but nothing has gotten worse. Little has changed since childhood. Luckily, I have a mild case.
Of the thousands of people Iâ€™ve met over the last fifteen years, Iâ€™ve only told four of you about the slow-channel disorder. Iâ€™ve lied rather than be honest. I’ve come up with stories to explain why I hold the camera like a precious doll or text with my thumb. When I go on dates, I never order spaghetti because I never mastered eating it with my left hand. Whenever Iâ€™m asked why I donâ€™t have children, it’s easier to portray myself as a selfish Hollywood type busy with his career than say the truth. Sophia and I feared having kids. Doctors told us that a child would have a 50/50 chance of inheriting the syndrome. Would our child’s ailment be mild, like mine, or more severe, like my father’s? We didnâ€™t know the answers, so we just avoided the question of children until it was too late.
This mild ailment has plagued me my entire life. The anxiety was mostly self-made, intensified by a family that didnâ€™t communicate. I’m sure my father felt guilty for passing the disorder to me, which became a barrier between us, and the reason he avoided telling me about his past.
I recently visited my neurologist in New York. He suggested I take a genetic test. Ten years ago, it would cost $10,000. Nowadays, you spit into a tube at home, and send it to the clinic via the post office. I now have a chart mapping my genes, showing the irregularities. It’s cool what science can do. It’s also a reminder of the importance of health insurance (hint, message to the Trump administration).
One of my favorite sayings goes something like this, with some paraphrasing, â€œWhen you are twenty years old, you worry about what others think about you. When you are thirty, you try not to care what others think, but you still worry. By fifty, you realize others were always too busy with their own sh*t to think about you at all.â€
Why write about this subject today after these years of silence? I chatted with a friend last week who admired the honesty of my writing. I’ve always tried to be authentic on my blog, writing about my fatherâ€™s passing in 2006, my separation with Sophia, and the ups and downs of my dating life. But Iâ€™ve hidden this important truth from everyone, the result of a family tradition of avoidance.
And it’s time to break the pattern of shame.