Makereta Brown
I have had Essential Tremor since I was in my teens. Essential Tremor (ET) causes parts of the body to shake when you are doing an activity. As opposed to a Parkinsons tremor, the tremor associated with ET goes away when the body is at rest. In New Zealand, ET is thought to affect 1-5% of the population. My tremor primarily affects muscles in my right fore, middle and ring fingers. The fine motor control in my dominant hand has been deteriorating for decades.
I was top of English in Year 13, but I botched my end of year internal. On that day, for the first time, my writing hand would not hold the pen. I remember having to grip my writing hand with the other hand just to hold the pen steady. I didn’t finish the questions in the exam because I ran out of time. I put that first experience down to stress. That month I had started working with a counsellor. Eventually, the decades revealed that the incremental physical destabilisation was not caused by childhood sexual abuse or adoption issues. Emotional turmoil acts upon ET in the way a speaker amplifies feedback. While not creating the physical condition in itself, stress can certainly intensify the shaking impulses when an individual’s cerebellum, thalamus, and motor cortex circuits happen to be incorrectly rigged for smooth precise movement.
I learned to work around the nuisance somewhat. Most sufferers are diagnosed with ET in their 40s or later, but a few of us develop the condition when very young.
Many of my initial inconveniences were small. I might fumble tying shoelaces. My tennis serve suffered. I used to play a mean pool game – me, a meek looking Pasifika girl with glasses, cutting unsuspecting male billiard champions down to gob-smacked size with the deft thrust of my favourite cue. In my day, I uplifted considerable winnings, not to mention a fair bit of popularity, as I went. But you need both hands to be steady to pull off pool tricks. I lost that capacity early.
The common wisdom is that learning to live with ET young makes mental and emotional adaptation easier. I tend to agree. Some things I simply take in my stride after all these years, things I watch older-onset patients struggle with.
Cutlery is an ongoing issue. I have a fear of burning my mouth. I used to regularly disperse hot soup or stew droplets down my front as my brain struggled to reconcile the likelihood of injury with my involuntary shaking. If I was lucky, I would simply spatter the burning liquid from the wavering spoon onto clothes or tablecloth. On particularly humiliating occasions, I would have to spit or dribble back into the bowl like a cat with a furball. I never wear light or block colours to dinner parties or restaurants. I have no hesitation asking the waitstaff to cut up my meat or pour tea from a pot. I will eat with my fingers if I see fit. At home, I change my top according to what’s for dinner. I sometimes wear a bib in the form of a towel.
Chopping vegetables, getting dressed, applying makeup and cleaning all require extra time. Carrying heavy trays, an over-filled cup or a delicately stemmed glass in my right hand can present a problem.
There have been more serious repercussions. I simply couldn’t pass exams. I hadn’t been diagnosed, so it never occurred to me to ask for a writer. In my family, you didn’t ask for help unless you were disabled and no one realised that I might be dealing with a physical impairment. I failed exam after exam. I was still undergoing therapy for some deep issues. I put it down to that. I lost confidence. I thought I was irreparably damaged. I gave up university.
Most challenging has been the effect ET has had on my ability to express myself. I was once an excellent portrait painter: I can’t hold a brush now. I was once a notably good singer. The condition has affected my vocal cords and I can no longer perform.
Most significant though, has been the effect on my writing. I liken it to developing a stutter. I used to carry pens in all my bags, in my purse and in the car so I could write my thoughts in notebooks, on A4 pads, on the backs of serviettes and menus. Being able to jot down notes immediately has always been, unironically, essential to me. My random ideas date back to when I could first form letters with a crayon. The physical writing of words onto paper with a pen was the actual flow of my voice.
I reinvented the process with keyboard, screen and printer to some degree. However, recently, the tremor has compromised my ability to type. My wrist flails wildly. I am learning to make use of the recording function, utilising my voice to create written sentences onto the paper. The ‘out loud’ technique is not how my brain works. It’s another new trick this old dog needs to learn, another synapse path for my brain to engage with.
But that is a good thing.
I recognise certain benefits of my ET journey retrospectively and in relation to other aspects of my life. It is a non-life-threatening condition which has taught me to adapt better than I might have been able to without it. Yet, like all degenerative complaints, it has stolen from me as well. The betrayal and grief go on.
So, however, do the insights.
Such is life.
Makereta Brown holds a Bachelor of Applied Counselling and is developing a creative arts-based therapeutic practice to help adults to navigate degenerative physical conditions. She was an Emerging Pasifika resident at the Michael King Writer’s Centre in 2019, and is currently based in North Auckland.
For further information, please contact the New Zealand Essential Tremor Support Group (NZETSG).
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