How Dystonia Affects My Handwriting
Before I developed dystonia, I knew my handwriting had been good. My teachers would wave around my notebook and show how to write neatly in a beautiful handwriting. I did not think it was a big deal at that time. I mean, who would be happy to win prizes every year in handwriting competitions? That was a sure-shot category I didn’t even count. I didn’t even count them later when I would hold the pen in my hand instead of my fingers to write. I would spend nights wriggling in pain with pain-relieving ointment applied all over my right hand and arm, paying the price for writing. There were days when writing would be exceptionally difficult and I would feel helpless. But I still enjoyed writing.
Being able to write was a sign I was doing OK. When I prepared my projects, it was “show-off time.” I would change the sheet if the handwriting was anything less than perfect. Each page was a masterpiece: a proof I was at my best. That explains why I would re-do the entire page if my hand trembled even at the last word of the sheet. But it also meant I would put in all I had and I couldn’t write much while doing projects. I could only write three to five pages a day after taking frequent breaks.
Just as the food you cook for yourself is usually different from what you serve your guests, the handwriting in my personal notes was different from the answer scripts I wrote for examinations. I would put in extra effort to make the answer scripts special, to make it a treat for the reader. Any examiner reading my answer script had to know I had not let the efforts of the professor go to waste. And if my handwriting was a part of my assessment, so be it. After all, a good garnish doesn’t just make the food presentable, it also invigorates the taste buds.
Serving the examiner with the garnish meant first checking in the examination hall to see if the table was steady enough. Only my hands could afford to shake while writing. If not, I would fold a piece of paper and put it underneath the table before starting to write. I would check if my hair was nicely tied behind so I didn’t have to make my hand do anything else other than write. It gave me a feeling as if I was about to play a tennis match.
With that solid start, I would read the questions as seriously as I could, because by the time I would start writing the third question, I would be too exhausted to read and comprehend what was written. It also meant that while I was preparing for the examination, I would have to spend additional time to remember the cues for all the points one after another without fail, because after writing for a while, I became so exhausted, it was next to impossible to recall anything. And yet I was still sometimes told, “You lose marks because of your handwriting.”
I did not apply for a scribe at that stage. Though an autonomous decision, it was partly influenced by my experiences of how some people associate unfamiliar symptoms with stigmas and partly because I was not sure if I would be considered entitled to get a scribe when I could actually write. I faced some trouble in getting a scribe even at a later stage in the U.K. since the symptoms would show up only after I wrote a few sentences and would worsen gradually. Then a time came when all I could write were lines, lines that were not straight enough. I read about it over the internet and started practicing writing ABC again, as slowly as a kid just learning to write would do, on a white board of a classroom that has now turned into an office at my university. I would write as big as I could, gradually reducing the size.
I was perhaps happier to learn how to write at that time than when I was a kid. I even remember clapping for myself sometimes! I would carry a writing board to class, kept it vertical and continued to practice in between classes. First I mastered the capital letters and then the small ones. But all that effort was not enough to write even a classroom test. I could not write much, nor could I write “like a grown-up” would.
When I asked for time to arrange a scribe, one of my professors said I need not write the test. They had known me as a good student for a while and were willing to accommodate. I asked him to allow me to write the test after a few months since I knew I wouldn’t be in that state for long. He allowed me to do so. I ultimately wrote the test.
I had to apply for a scribe for my final examination that year and much to my relief, I got one. I still remember how nervous my scribe was before the first examination, wondering if she would be able to write as fast as I used to. She would roll up her sleeves, keep the watch next to her and just write as I said. It was a little difficult to coordinate on the first day. I would pause until she had completed writing what I said, only to forget what I was about to say. The next day, the moment I would pause, she would ask me to continue to speak as she would increase her pace. She had agreed to be a scribe after many people had refused. One of them had come to me and asked, “Didn’t you write exams all this while?” I kept explaining to many of them. But she said yes without even asking me a single question.
They say the proof of the pudding is in the eating. It’s particularly true in cases of “invisible” illnesses. Unlike the story of the Naked King where the clothes did not exist, these illnesses do exist but are only visible to those wise people who have experienced them. Otherwise people can only believe us or think whatever makes them feel comfortable.
I recently went to one of the best neurologists in the country to get a clearance. It was the first time I was visiting her. She examined me and asked, “What do you do?” I initially told her I scribble! “Huh?”
“I am a lawyer,” I said.
She was quite astonished. “How do you do it?”
I laughed. It was the first time I was asked this question. I told her I had reached that phase of my life where I am no longer judged by my handwriting. And it felt great embarking on this journey where I could appreciate every moment when I could hold a pen and move it by my own will. The gradual worsening of ability to control the hand as I wrote felt like chocolate chips in a cookie. You bite them hard, they hit you and you don’t enjoy the taste. You be with it, it dissolves. The more I experienced pain while writing, the more sense of triumph I felt after completing the assignment.
While the unpredictability caused fear, sometimes anxiety (I would wonder what would happen if one day the signatures did not match), not knowing if I would be able to write or not until I actually did would keep the fun of writing alive. Not everyone can look forward to the mere act of writing as I could.
Now I don’t have to try to write for others. That’s the best thing professional life has done to me. I can scribble notes every now and then during meetings without caring about the extent to which I can control the way I write.
Getty image by Nattakorn Maneerat.