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.
I enjoyed this very much, Neil. Thank you for sharing.
and I didn’t mean knowing you have a condition, but rather your storytelling in sharing it with us.
ha, I assumed so!
Pattern of shame? Pretty mild shame, if any at all. And a cool story in many ways.
Next time we meet, let’s go out for spaghetti. I’ll teach you to eat it with chopsticks. No kiddingâ€”udon-soup-style should work for you. You can’t go through life denying yourself spaghetti!
I have done the spit in the tube and the cheek swab, and have worked out that my dad’s side is probably Jewish, but maybe Sinti Roma. What’s your paternal haplogroup? If we’re related, I’ll hit you up for a loan; that’s what families do, right?
Oh, I eat spaghetti and ramen all the time. I just avoid it on dates. As for the spit in the tube test, it was less of a genetic test than a DNA one, and frankly, I couldn’t understand a word or the report. But will talk to the doctor this week. I don’t think it helps me in any way, but it isolates where the faulty gene is. I think this is why my father was so silent…. even though he worked in a hospital as a physical therapist of all things! He knew nothing could really be done, and that they will use use mostly as research tools, so I get why he wanted to avoid a lot of it. I’m not sure I want to ever deal with a biopsy again.
I find this piece, and the responses to it, fascinating. Maybe I’m an insensitive turd, but I’m a little perplexed at the level of your shame.
Yes, the matter is personalâ€”especially when you and Sophia had to discuss the prospect of children with a more debilitating expression of your genetic abnormality. The conversations must have been heartbreaking, and I can only imagine how difficult you found it.
But shame? Why? You’re not personally to blame.
Yes, we should maintain a reasonable boundary between our public and private lives. A good rule of thumb that often comes up in some support groups I attend: healthy families respect privacy, unhealthy families keep secrets. You don’t want to blurt out your last seven breakfasts to a stranger you meet on the bus, but sharing something personal about yourself is a sign of warmth, honesty, and trust. And an utterly reasonable human act.
After a certain age, my siblings and I ceased to share our personal lives with our parentsâ€”way beyond the normal adolescent desire for independence. My father would weaponise any personal detail, finding something to fault with it. My mother went a bit too far in the opposite direction sometimes; she would not only tell the stranger on the bus her last seven breakfasts, but probably offer to show her family photos and caesarean scars.
By contrast, your story feels absolutely right. It’s very interestingâ€”I mean, it’s been written up in medical journals, fer chrissakes. And nothing you say would cause hurt or show disrespect.
Being a writerâ€”especially an exceptional writer such as yourselfâ€”means you will write about subjects that stir emotions. If you want to write something meaningful, it has to be personal in some way. Could you fictionalise it, to protect everyone’s feelings? I’m not sure that’s possible, especially nowadays when works that are purely fictional can be dismissed as contrived or inauthentic.
You’re not a James Patterson, George Orwell or J.K. Rowling, who work(ed) with invented characters. (And even Orwell wrote many personal essays)
You’re more a David Sedaris, Augusten Burroughs, William S. Burroughs, James Baldwin, Nick Flynn, or Mary Karr. (Yes, I know I chose lots of gay authors in that last sentence. So sue me.) In particular, Flynn’s “Another Bullshit Night in Suck City” turns the potentially shameful into moments of great emotional impact. And it would pack less of a wallop if it hid behind the the thin, unconvincing veil of “fictionalisation”.
P.S. I accept the chopstick challenge. But I need to know if you can hold a pencil in your right hand. If so, you can use chopsticks. I learned chopsticks as an adult, so I use them like a second languageâ€”that is, perfectly by the book, but probably without subtlety or nuance. I can also finish giving you the advice I promised on after-shave. Lemme know.
I love the way you speak of Sophia. Also the introspection you sometimes do in this way that is equal parts matter of fact and tender. I’m glad to have read it.
Having a genetically passed on condition myself, I feel you. Also, those EMG’s suck, don’t they? I had them testing all four limbs last year and I’m not going to lie, I cried because it hurt so frikkin much.
As always, good on Sophia. It can’t have been easy to get the male family members to open up and be tested, but you can all help prevent deterioration now. That’s a good gift she gave your family.
Neil – what can I say? When I share my deepest emotions and family issues publicly for years. It is healing, and I find it validates my feelings especially since I have had such a problem in trusting my emotions. So – absolutely thank you for sharing this, your very personal and important story of your life and family secret. It can only heal and make you stronger going forward. Sending love and light to you, dear old blogging companion!
You never cease to impress me. Today I was not only impressed by your candor and your delicious writing, but by your courage.
Thanks so much for sharing your story! It’s so important to do so… it’s healing and how connection grows. Wishing you all the best.
Thank you for sharing this deeply personal piece of your life and your courage to transform the shame into a powerful truth and help for others!
Your former wife Sophia deserves much of the credit for her love and never-giving-up spirit to get to the root cause.
Courage is liberating.
All the best wishes to Sophia & you.
I’m proud of you, Neil, and inspired. I live with thousands of secret stories and dream daily of being able to let them fly. I fear I lack your eloquence, so secret they sit. You’re going to help people by talking about it. You have already helped me. Hugs, Kristen
I think it’s great that you’re finally talking about this. Much love, Neil.
Thank you for sharing. This is fascinating and important history. I’ve never understood why so many people insist on secrecy about things that could so benefit from a little daylight exploration out in the open. There’s no shame in having a medical condition, or a genetic health issue. It is what it is. Let’s look at things directly….name them, talk about them, research them.
Every family has some issue. In mine it’s alcoholism/addiction and ADHD. I’m constantly trying to get my family members to openly acknowledge it and address it as something that many of us suffer from, since it affects everyone in the family either directly or indirectly! Denial is so strong though. I don’t get it.
I’m so glad you finally shared this. And I’m honored to be one of the few who already knew. Getting this out of your head and onto “paper” has to feel freeing.
I remember when I told you. We were having a drink at the top of the new World Trade Center. And I nervously said I have something very important to tell you. I was very glum. And you asked “Are we breaking up? Are you going back to Sophia? Are you dying?” And I was, “No, my right hand is weak!”
Hahah! It was basically just like that.
Ha, one of those sculptures is at Columbia!
First…you know I feel you friend. Second.. the mild shame. Yep… and for me the constant not knowing. I said to my phychaitrist during one of our first meeting a core essential truth. ” I never know WHY people are looking at me.” As a woman people look at you…I have never ever known why they look. Sounds minor…It’s major if you feed in to its unbalancing effects. You have to be you, tell you truth…and deal with h\the sick feeling that while others get to hide their imperfections on the inside… some of mine are on full display. Hugs.
well, you certainly looked happy on your trip to Vienna!
Well done. Honesty makes all the difference in blogging. This is what keeps me in the game.
Bravo! First time I have read your work, but this piece has made me a fan. You have revealed not only your own affliction, but also, and far more importantly, the personal torment with which we all often afflict ourselves for fear of what others may think. One of my mother’s favorite expression was, “It will never be noticed on a galloping horse.” As everyone else in the world gallops by, we all need to realize that they have far more important things on their minds that us. Mostly they are thinking about themselves.
I like your mom’s expression. Never heard of it before. Thanks for reading.
Oh I miss posts like this. And I am so honored that you have decided to share it with us! xo always
Yeah, we might need to buy health insurance just for our sick and lonely blogs.
I’m with so many here, I miss this kind of blog writing.
Thank you for your courage in two ways – first for seeing yourself clearly; and second for sharing your story with us.
Bravo! No doubt, someday someone who has been newly diagnosed with slow-channel congenital myasthenic syndrome (CMS), will google it. Hopefully, they’ll come up with your blog post and see that it’s much better to talk about and get treatment than to do nothing!
I was a little concerned about that, even if I should tag the syndrome. What if someone contacts me for advice, and I really don’t know that much?
Thanks for your honesty, Neil. I have never heard of this condition; undoubtedly you will help some people with this post.
Neil. So honest! I hope this heals some part of you. Thanks so much for sharing.
Thank you for sharing this story with us, for breaking the secrecy seal.
I have a lot of medical things going on and a family history that requires me to check almost every box on those new patient forms. It’s overwhelming to face this stuff down, but it’s made easier when there are people who will listen and offer guidance if they can.
What a great story! Only four of us knew? I always liked the way you hold your phone, I tried to capture that in my drawing of you back in Chicago. It’s one of the things that makes you, and yeah, several people commented on that about that drawing, so people did notice, they just didn’t know it was a congenital syndrome.
How do you feel now that you’ve shared it?
Neil – wow – very powerful. Thanks for sharing.
I understand. At our house when I was a kid, you got sick and they would say if you are not better by tomorrow we’ll go to the doctor. You either got better or died but we never went to the doctor as children except when my sister broke her arm and another sister was bit by a dog. My eyes were crossed and I was made fun of all through school. By the time I graduated I decided it was everyone else’s problem and didn’t worry about it much even though my vision was impaired. I was already married and an employer told me I should check to see about getting my eye fixed. I said it won’t help and insurance won’t cover it because they say it is only cosmetic. I don’t know what he did but the insurance did cover it and I had the surgery. My eyes still do not work together but at least they look like a ‘matched set’ from the outside now. If they had been fixed when I was a kid it probably would not have affected my vision. But my dad worked in a factory and probably didn’t have insurance to cover anything you weren’t dying from. I guess that generation just learned to make due and as long as something wasn’t completely debilitating you just live with it and forget about it.
Good for Sophia for digging til she got answers but I know how horribly hard that is. My mother had her last child in 1967 and from then until her death in 1999 she never went to a doctor. She said she was done with them. So when doctor’s ask about family medical history I just have to shrug and say well they are dead…
Hang in there.
Thank you for sharing the story of your family’s genetic disorder. It’s a very engaging read. I feel for your father and the men who bore this illness the best they could. You give us a glimpse of the toll it must have taken on him and your family.
How far science has come, it’s amazing how much more we are learning about the genome and genetic disorders. I applaud your courage in sharing this. So true about the importance of health insurance.
Very well written
This is interesting! Don’t be ashamed of it at all. Most people would be afraid to speak of such matters as well. Know that you aren’t alone 🙂
I really enjoyed reading this, and it made me realize that I shouldn’t be afraid to admit my faults and weaknesses. Thank you.
Indeed it is time to break the pattern of shame. And you’ve done it. It has no hold on you anymore. Instead, you’re free and in fact helping others to kick their shame to the curb too. Bravo. Carry on, warrior.
Wow this is fascinating. Thank you for taking the time to write it all for others to read
I enjoyed your writing. A great piece. I’m new to this blogging stuff so I thought I ought to meet some of the champions here. Thank you.
Great write up! It itakes certain amount of courage to be yourself and share your experiences. I’m sure this post will be helpful to many. Thank you.
Thanks Neil for sharing this with us, I personally believe that the bolder we are about sharing our vulnerabilities, the more human we really are. And on a personal note, I completely identify with you because living with myoclonus dystonia is such a profound experience that it becomes a little bit unsettling trying to explain what it is all about. And so I took to blogging (finally and with the gentle prodding of my best friend), realizing that my blog is less of an outlet and more of a beacon shining out to others with the message; “you are not alone”.
Being candid and bare when writing does carry a bit of your soul and that is the wonderful thing when I come across individuals like you. And I once again identify with your apprehension about having kids, because in as much as I did not choose this, I do not want to entertain the fear of passing it on. However I have always believed that the mystery of tomorrow should not be clouded by the fears of today. To say I was almost a wreck when my kid started having infantile spasms is putting it mildly but then again we are all creatures of purpose and I dare not hold back when I can give.
I would really love to share this post on my blog because it is from the heart and that is my signature style. A follow back would be really nice because of your statement on genetic testing because my neurologist has persistently advised against that since it is still a relatively unknown aspect. Thanks again for sharing and I salute you. Regards
Thank you so much for sharing. I know the feeling of shame that you wrote about. I’m 19 and have Limb Girdle Muscular Dystrophy 2A; so far I’m the only one in my family with this disease other than some really distant relatives who have it. I was diagnosed at the age of 15. At that time, I felt so alone because I felt like no one understood how I felt, not even my parents. I cried a lot, worrying about my future, worrying that no one would like me, etc.. Everytime my parents saw me crying, they would say, “It’s okay, you’ll be fine.” I knew deep inside that even they didn’t believe those words. I was so worried because with this disease, the doctor said my upper arms and legs would later become so weak that I would not be able to climb stairs, walk, lift my arms, stand up from chairs and floors if I fell, etc… Of course, thoughts would haunt my mind, I would think about myself not being able to hold and play with my own children if I ever got married. Stuff like that makes me sad sometimes, and I start to freak out once I start to dwell on those thoughts. So, I do my best to focus on the present. Yes, I do fall a lot, I cannot run at all, I cannot climb even a few steps without holding on to railings or support, I cannot walk a long distance without feeling like I’ve just ran a five mile marathon. When I go on walks, I constantly thank God that I am still able to put one foot in front of the other. I am still able to get around on my own and I’ve pretty much mastered the art of falling, lol. I still feel ashamed sometimes because I’m very self conscious about how I look when I walk though I never admit it to my friends. My goal lately is to inspire others. I’ve been asking God to help me to not look at this disease as a disappointment but rather have contentment in it. I want to bring glory to Him, help others, and not always focus on myself. I just don’t have the courage to talk about it to people. I didn’t mean to write this much lol so excuse the long comment/post. 🙂
Keep inspiring others as you have inspired me tonight! God bless you.
I really appreciate this post. I can relate, having been diagnosed with HNP, Hereditary Neuropathy, passed on by my father. I am thankful my case isn’t severe and appreciated that my diagnosis explained my lifelong challenges with balance and pins and needles sensations in my hands and feet. The EMG test was truly awful though! I’m seeing a new neurologist soon and hope I won’t have to be subjected to that torture again!
That was some really big and important honesty out there. It is absolutely nothing to be ashamed of , I’m glad you decided to come out in the end. Your story is highly inspirational Thanks for sharing!!!