Lois H., San Diego, CA
(New York native)
My earliest memories of what I now know to be Myotonia Congenita are when I was about 4 years old. We had tall stools at a desk my dad built in our room, and I was always afraid to sit on them – I never felt safe getting on or off, and after sitting for a while, if I wiggled or shifted weight, I thought I’d fall off. It was the beginning of my lifelong fear of heights and precipices. I also remember my dad dancing with me, and me being stiff and feeling like I wished I could dance like my mother did. It was my first inkling that I was “clumsy”, even though I felt so graceful inside. I was also very self-conscious playing tag or hopscotch, and when I learned to roller skate, it was both a real thrill, and a very terrifying experience.
I loved horseback riding, but didn’t go very often because of the looks I got trying to mount the horse. And I always thought I was just a really poor ice skater (part of my “clumsiness” theme), even though I had such strong legs, and really tried hard. My parents made me take ballet lessons for years, and while I really loved it some of the time, I REALLY cursed it much of the time! Can you imagine someone with MC in toe shoes, doing en pointe? Good Grief!! Even the piano and violin lessons I had to take were a form of torture – I LOVE music, but could never play well, because my hands and fingers and arms and neck all conspired to make me miss notes, or hold them too long. And swimming was a nightmare too terrible to discuss.
I used to love to run, alone (once I got loosened up), just for the sheer thrill and freeness of it – though a few people who caught me in the act told me I looked like I was wearing stilts, or other odd observations about my stride. There are manifestations of this condition that I am constantly learning about – those “ah-ha!” moments where things suddenly become clear to me. Things I had to make excuses for all my life, knowing my excuses were really fibs (what a paradox – you’re not supposed to tell lies, but they won’t believe you when you tell the truth!), but figuring that the real reasons must have to do with deficiencies in my character or lifestyle or, of course, my weight, since everyone said there was nothing wrong with me that more exercise and diet and motivation couldn’t fix. Even when I really wasn’t heavy, my enormous muscles made my family believe I was fat, and they constantly badgered me about it. Now I’m very overweight – self-fulfilling prophesy.
People’s reactions, and my career: People have always commented how active and limber and strong I am. Then again, I worked very hard all my life to mask my symptoms as much as possible, so most people never saw the worst of them - or were satisfied with my constant supply of excuses and explanations about my frequent odd behaviors. I think it became part of the bubbly, bouncy hippie chick persona of my youth, maybe a bit quirky like Goldie Hawn. I can’t remember a time in my life when I didn’t feel drawn to do hard physical work of some sort, like hauling rocks, digging trenches, cutting firewood, etc.
There were a number of careers I would have chosen. My grandfather taught dog obedience, track and field, and trial, and I helped him sometimes – but was always afraid to teach my own classes because of the sudden actions required, and the “stage fright” of demonstrating techniques in front of a class full of people. It’s also why I “chickened out” of showing my dogs (We have Dobermans) – can you imagine running with a huge, strong dog around a ring with a bunch of other dogs. Yikes! I know he was disappointed that I didn’t become his protégé, and continue in his footsteps. I wanted to! It’s also one reason I did not become a teacher or a lawyer – 2 professions I would have loved passionately, and involve myself in peripherally.
I think one reason I loved acute rehab nursing was how very physically taxing it was – and how very rare it was to have emergencies. It was also so positive – I helped people to regain mobility, self-control and their independence. Early in my nursing career, I knew that people noticed how slowly I moved during a crisis, and probably figured I was scared to participate. Since I didn’t know why I couldn’t move fast, I just felt ashamed and inadequate. Once I found case management and utilization management, I became a different person, because I was valued for my brain, and excelled. It was a rebirth for me, and I blossomed.
My most embarrassing moment (there must be at least 1000 of them): One that I remember as if it were yesterday was a walk in the park with my boyfriend in high school. The park had a beautiful old stone wall, about 4 or 5 feet high, and I was walking on the capstones, feeling a bit daring. My boyfriend told me to jump down, into his arms, and I declined. He asked again, and I panicked, because I knew I would fall like a boulder, and look like a fool. I started to argue, then cry, because I felt so threatened and so stupid. He was thoroughly confused and thought I didn’t trust him to catch me. (He was very strong, and could easily have caught me if I weren’t stiff as a board.) Since I had no idea why I was the way I was, and covered up my problem quite effectively most of the time, I had nothing to explain my behavior with.
I hid my myotonia as many of us did – I became a master storyteller. I could think up excuses so quickly it would make your head spin. I let all the other students go up the stairs during class period changes because I had an itch, or had to check if I had the right paper. Getting on the bus, I would suddenly be unsure if I had the right change, or my bus pass. In a waiting room, I would pace or wiggle “because I was jittery”……. I always get window seats on airplanes, so I don’t have to stand and let people go by during the flight. They’d wet their pants waiting for me to move. We all know these routines. It’s just that some people knew why they were doing it, and others of us remained completely clueless, and were convinced by the adult world that our “nonsense” was all in our heads, or we were just playing games or looking for “ways out” of doing things that were required social norms.
I would never have known about Myotonia Congenita, and would have died thinking my body was just a horrible place to live, but that it was all my own fault. Then I acquired a work injury (Carpal Tunnel Syndrome plus de Quervain’s Syndrome and Repetitive Stress Injury). So, at age 54, during a routine diagnostic series of nerve and muscle conduction tests, an attentive and perceptive – and caring – neurologist heard the dive bomb sound, and asked me the fateful question that brought tears to my eyes… “Tell me what happens to you when you shake someone’s hand?” When I think about Dr. Jablecki’s simple but shocking question, I still get the same shaky, butterflies-in-my-stomach reaction I did on that day. I think that day, even more than my wedding day, or the birth of my son, was the very best day of my life, because it was the day I was actually given my very own life, my “real” life, and not the shadow life I had been living for 54 years. The last 3 years have been difficult ones because of my work injuries, and the fact that I have become disabled, can no longer work, and am having to fight “the system” to be approved for SS – but even so, I now know myself. I am grateful for that. I think my husband secretly believes I’m dwelling on it a bit too much, but I’m really just working on deconstructing, reconstructing and integrating 54 years of alter ego into my new real self. It’s sort of like a caterpillar becoming a butterfly – well, maybe a moth. (Can I be a dragonfly??) : )
Now that I have several disabling injuries, I find that the Myotonia presents other challenges. I have constant pain, weakness and instability of my left knee, and both hands and forearms. Plus, I am becoming somewhat arthritic, which is not uncommon at 57, and does run in my family; and is also a probable sequela of the injuries and surgeries. Since I move more slowly and deliberately most of the time now, the intense stiffening isn’t usually such an over-riding impediment anymore. However, because of the instability of my knee, if I do lose my footing, it’s very scary because my hands are no longer strong enough or stable enough to fall on or catch myself with, so I fall quite uncomfortably and clumsily, and fear one day I will break a hip, or my nose. I use a stick or cane when walking around the property with the dogs, both for the uneven ground, and because the dogs are rambunctious and think nothing of bumping into any member of “the pack”. For that reason, I am one of the few Baby Boomers who is actually thinking proactively about when the time will come to use a walker or scooter – or ATV?!! LOL!