Learning to write left handed because of dystonia

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“Well-meaning friends who, for one reason or another, came to the knowledge of my long and tedious battle with writer’s cramp almost always asked whether I was absolutely certain it wasn’t all in my head.” ©Bits and Splits / Adobe Stock

Learning to write left handed because of dystonia

Dystonia, a neurological disorder, affected Joyce’s capacity to write and work as a nurse. Learning to write left-handed was her solution.

I sit in the waiting room outside the clinic of one of the top neurologists in the city. To my right, a man in a wheelchair slowly sinks to one side. His face is skewed and he gives me a crooked smile. His daughter wipes the drool from his mouth. The secretary resurfaces from behind the door and calls out a name. The woman to my left slowly gets to her feet, which shuffles temporarily as she holds up her walking stick with a tremulous hand. The younger boy who came with her has to take her by the arm in case she loses her balance. As soon as she gets in, the door closes. And everyone is back to not staring at me again.

What’s wrong with her? I can almost hear them think.

A little while later, the old lady exits the clinic as slowly and as tremulously as she went in. The secretary follows after her and holds up the clipboard. She calls my name and I raise a hand.

“Who’s the patient?” She asks me, scanning the space just in case I left my grandmother languishing in a corner somewhere.

“I am.”

The room grows quiet. I get up and make my way to the door, a sea of probing eyes locked in my direction. They’re on the lookout for a limp or some peculiarity in my manner of walking – anything that would betray the reason for my being here. But I have none of those. What could possibly be wrong with her? I can almost hear them think. 

"Does she have something like Repetitive Strain Injury or Scrivener's Palsy?

My dystonic writer's cramp was real and disabling

Writer’s cramp is a neurologic movement disorder that affects the muscles of the hand and forearm. It is given that name because it’s task-specific and manifests itself only when the person is writing, causing the hand to twist into odd and unusual postures, making it almost impossible to do the task without causing pain. It’s like getting a cramp in your leg and still trying to swim. You’ll be fine as long as you have no reason to be in the ocean, but if you’re a lifeguard, it can be a bit of a problem.

I wasn’t a lifeguard. I was, however, a nurse. And in nursing, whatever is not written down has not been done. Writing is fifty percent of the job. And where I was working, we were a long way away from electronic notes.

But that wasn’t the problem.

Weeks before my diagnosis, I was offered a nursing position in a reputable hospital in England. It would have been a huge relief for me, as I naturally assumed the job would require less paperwork compared to the same job in the Philippines.

However, before I could work as a nurse abroad, I had to pass the qualifying exam. The first part of this exam required a demonstration of actual hospital procedures, which would be nerve-racking in themselves, but which both my hands had no problem carrying out. The second part, however, was an essay. And therein lay my downfall. I would have borne it, though. It would hurt, of course, but I would see it to the end. If you wanted something badly enough, you would find a way to get it. And there was no other way around this one.

Or so I thought.

One day, as I sat in the nurse’s station struggling through the usual admitting notes, one of the doctors dropped by on her lunch break. She sat in a corner long enough to notice the odd angle of my hand and, without preamble, remarked that she thought she was looking at a classic case of writer’s cramp. This was the first time I’d ever heard of it. Seeing as I had for years assumed there was nothing clinically wrong with me, I never thought to look it up online. After a few more strokes with my pen, which she asked for and which I happily obliged, she offered to refer me to a neurologist who could officially confirm the diagnosis so we could begin treatment.

Treatment, I thought. For the first time, a door I never thought existed was finally opened for me. There was a silver lining, a pot of gold, and all other metaphors that, in my inexpressible delight, confounded themselves in a jumble of pure excitement. The bane of my life, after all, had a name. And knowing my enemy was the first step in conquering it.

It was on that lazy afternoon at the clinic that they confirmed that I had been suffering from a rare form of focal dystonia for the last seven years. It would be a while before I realized that I would quite understandably get very little empathy for it because of the unusual presentation of my disability.

The day I started treatment was the day I discovered there was no cure. Writer’s cramp, also known by its other names, mogigraphia, or scrivener’s palsy, used to be more common in the 1800s when most occupations required a lot of writing with pen and paper. The farthest we have gotten in terms of treatment is through injections of Clostridium botulinum, which is widely known today as Botox. I had six jabs of the toxin up my forearm. And since Botox only lasted an average of six months, I was expected to go through the same procedure on a regular basis. My arm felt heavy as I lay in bed that night. And I drifted off to sleep imagining the chemicals seeping through my muscles and working their magic.

What's scrivener's palsy commonly known as?

Well, it's called writer's cramp, mogigraphia, or scrivener's palsy. It's basically a condition where you get cramps or spasms in your hand and forearm muscles while doing tasks that require fine motor skills, like writing or playing an instrument. Writer's cramp is a specific type of hand dystonia, meaning the symptoms are limited to the hand, and it only happens when you engage in a particular activity. At first, it messes with your ability to write, especially for long periods of time. We don't know exactly what causes writer's cramp, but some people used to think it happened because of too much repetitive hand movements or bad writing techniques.

Source: The Recovery Village

I woke up the next morning with three of my fingers dead. Whatever magic that was, it certainly wasn’t the one I was expecting. My right middle finger, ring finger, and little finger had all but drooped down to my palm. And no amount of force or willpower was strong enough to move them – unless, of course, I held them up with my other hand, but what use was that? My thumb and index fingers were the only ones I could move about and control. I had pincers where my hand used to be. I hurried back to the hospital in the faint hope that there was still time left to break the spell.

This was the start of my two-week course of physiotherapy and transcutaneous electrical nerve stimulation (TENS). As it would typically take Botox about ten days to take full effect, I went through a regime of concordant muscle stimulation in the interim to help it along. Drooping was a common enough side effect, I’d been told, but I hadn’t fully grasped how badly it could get.

By day 3, I’d had to buy myself a battery-operated toothbrush since the virtual disappearance of three of my dominant fingers made even brushing my teeth nearly impossible to do. My left hand gave it a shot, but all it did was jab at my gums and try to poke my teeth out.

As the newly introduced toxin began bonding with my nerves, I realized day after day that it was only going to worsen. By the end of two weeks, I could no longer brush my hair properly, no longer hold a spoon, and to top the irony, I could no longer write at all. The task I had intended to salvage, I could now no longer perform even at the level of a five-year-old.

But life went on. My new job and dreaded exam were fast approaching, regardless of what was still happening to me. At the airport, my arm was numb and aching in places, and I couldn’t lift my luggage without feeling like my muscles were about to rip themselves apart. Six months, they said. Six months until the effects wore off. The good news was that it would wear off. The bad news was, the exam wasn’t going to wait that long. The state I was in, if I had to perform injections in front of a strict table of assessors, I’d be more than lucky if I didn’t end up jabbing myself in the process.

My mentor advised me to consider writing a letter to the Nursing and Midwifery Council asking if I could use a computer for the written part of the exam. But seeing as the main point of the entire business was to determine whether I could do the job and all that it entailed, we both agreed it wasn’t a very good idea. It was tantamount to sitting in a game of chess, announcing your weak squares, and asking your opponent to let you win regardless. I would have a much better chance if I waited and postponed my exam until I got the rest of my fingers back.

Soon enough, the Botox started to wear off, albeit rather slowly. A week before the exam, I was just about able to control my hand enough to put sterile gloves on flawlessly. This was, however, in the middle of somebody’s living room with friends in pajamas for audiences. I had no idea if I could pull it off in the actual assessment. Having drowsy fingers attached to sweaty palms, was like trying to slide a glove smoothly over five melting caramel sticks in the middle of summer. Not only that, but the rush of adrenaline also had a way of amplifying my condition ten times.

But at last, the heavens smiled at me, and I was able to take the test with everyone else, finishing both practical and written sections without incident. The writing was agony, of course, as I had pushed my newly awakened muscles within an inch of their life, outlining a care plan for a fictional patient. I had painful spasms up my arm for at least three days after that, but it was all worth it. I had passed. I got the job. I was going to be a nurse – again.

From the very beginning, I had been transparent about my condition with anyone who needed to know. And bless them all, although half of the people I told thought writer’s cramp was the stuff of legend, they did their best to wrap their heads around what I could and couldn’t do. Since the Botox had almost completely left my system, I was back to having just one item on my list of impossibilities. In as apologetic a manner as I could, I came clean on my very first day of work and told the necessary people that I couldn’t write standing over a patient’s bedside, couldn’t write on an inclined surface, and couldn’t write unless I was sitting in front of a desk, and even then, with great difficulty.

I wasn’t one to draw attention to myself, especially when so many patients had much bigger problems than I did, so after that first introductory statement about my predicament, I carried on without complaint. But as was only natural, anyone who saw me injecting and cannulating and doing all other jobs with ease instantly forgot that the same hand I used to carry out these fine motor skills would be unable to do something as elementary as putting pen to paper.

The first person I confided in about my condition turned out to be the one who would hold my limitations against me. I was taken aside and told that I wasn’t taking my job seriously, as documentation was crucial inpatient care, and I often waited until the end of my shift to update the notes. I knew deep down that the guilt I harbored was misplaced; nevertheless, I felt terrible and inadequate. It was at this moment that I decided to get everything down in black and white.

It took two different doctors and one neurophysiologist to confirm my previous diagnosis of dystonia and get an official sick note saying that I was “currently unable to write” and could carry on working with “amended duties.” But the journey wasn’t finished yet. It took several months of physiotherapy, ten different types of pen grips, and a very well-intentioned wrist splint to prove that not a single one could help me.

I was referred to one of the big hospitals in London to see a specialist in movement disorders only to be told, yet again, that the best option for me was Botox. Yes, there was a chance my fingers would droop; and yes, it was a reasonable risk, they said. I could do nothing but heave a sigh of frustration on the train home. I had tried everything and had come full circle. There was no way I was going down that road again.

Confirmation from a current total of six qualified doctors in two different countries did very little on the side of empathy, however. Well-meaning friends who, for one reason or another, came to the knowledge of my long and tedious battle with writer’s cramp almost always asked whether I was absolutely certain it wasn’t all in my head.

My reaction to these remarks isn’t one that I can assemble into polite sentences, but suffice it to say that this often became my litmus test for identifying which friends were worth keeping.

Some friends abandon you when are sick. Some stick by you. I mean, what to do when people don't believe you're sick?

It was all in good humor – or as much good humor as I could manage – but the results turned out to be correct nearly all of the time. Whoever thought my right hand could be such a great judge of character?

Learning to write left handed was the solution

I knew from the beginning that learning to write left-handed would be the equivalent of learning a foreign language. But when pushing my right hand became more difficult than fumbling with my left, it was clear I had no choice. It was either learning to write left-handed or Botox. 

If people could learn to write with their feet or paint with their mouths instead of their hands, there was no reason why I couldn’t teach an appendage the same task its twin had already mastered. As long as I told myself I couldn’t, I knew I never would. And so, over the next two years, I taught myself to write with my left hand. That in itself is something I will always be proud of.

It’s not all the time, however, that the talk of writer’s cramp becomes an unsolicited diagnosis of psychosomatic disorders and an inquiry into my mental health. Sometimes the answers are far more interesting. One evening, for instance, a colleague noticed the obvious and asked whether I’d been left-handed all along. I ended up giving her the litmus test.

“Oh, really?” she said. “Lucky you’re not a writer, then.”

I didn’t say a word. For that, my friends, is a whole ‘nother story.

"I taught myself to write with my left hand. That in itself is something I will always be proud of."

Article by
Joyce Rachelle

Joyce Rachelle, author of "Learning to write left handed because of dystonia," spent her childhood in the Philippines, where she published All the Lines, an anthology of traditional poems, and Sewing Figs, a story in verse.