The Art of Inciting Concern (What It’s Like To Not Look Okay)

Flickr / Walt Stoneburner
Flickr / Walt Stoneburner

“Are you okay?” Someone will ask me.

I am almost always puzzled at the presentation of this question. I tilt my head in confusion and begin a routine of self-examination. Do I look pale? Flushed? I wonder what could possibly be wrong with me in that very moment. If a mirror is near, I check it. I don’t think to ask why the question has been posed. I am intent on figuring out the reason for myself.

A moment later the motivation for that question sinks in like an anchor along with my own self-awareness.

“Yes.”

I respond with both an answer and an understanding of how I must appear to those who don’t already know the content of my story. The realization of what my body looks like to those who aren’t in it is suddenly clear.

“I’m fine.”

Cue explanation.

I am nine years old the first time I notice it. Watching my reflection as I lift a hand, the realization sets in. My hands, during use, shook.

My “shaking” grew more noticeable with time, increasing in both strength and frequency. Elementary school teachers scolded me for holding the pencil wrong. The weaving of writing utensils through my fingers was not a result of disobedience, but of convenience. Physically incapable of scribing any other way, I held on to pens with a near death grip. I was unable to conduct experiments in science class; every liquid I held was inevitably destined to meet the floor. My childhood dreams of becoming a waitress (I clearly had high aspirations) were crushed with the reality that I would never be perfectly still.

After multiple trips to different neurologists and a series of tests, I was finally given a diagnosis of Essential Tremor; a benign movement disorder apparent in active parts of the body. Similar to Parkinson’s, my disorder causes a constant tremor, an earthquake of the hands that shakes strangers into a flurry of concern. While I appear to be a natural disaster in the making, I am actually quite fine.

Bodily shaking is most commonly associated with nervousness, drug use, and faintness, therefore I am most commonly associated with nervousness, drug use, and faintness. Sophomore year of high school I am called into my guidance counselor’s office after my 5th period class. I later find that a teacher of mine had sent in a report about suspicions of drug use, stemming from a lack of knowledge about my tremor. I am shocked at the not so private accusation, anger and disappointment expanding inside of me like the disease had progressed. It wasn’t the unknowingness that bothered me, nor was it the ambiguity that my apparently nervous hands cause; it was because she never asked. I wanted nothing beyond stillness, to be able to hold out my hands without the fear of dropping their contents.

If I were to be honest, most days I forget about the ever-present vibrations my hands emit. I go on with my daily life, completely ignorant to the constant motion of my own body. I mostly just attempt to eat soup without wearing it on my clothing. My routine is as predictable as it should be, maybe even normal. Some days though, the fluctuation of my physical nerves can make what most consider simple into a challenge. My hands swell even after a short amount of usage. Pain similar to Arthritis can some times twist voluntary movement into a seemingly impossible task. Along with the shaking, my disorder comes with strange but common symptoms. I have a decreased sense of smell that comes and goes. On occasion the tremor will encompass my head, creating an unintentional vibrato in my voice. I suffer from short-term memory loss, frequently associated with neurological disorders. I am at an increased risk of obtaining Parkinson’s disease, something my mother’s sister has been recently diagnosed with (the reality of my genetic predisposition terrifies me incessantly). I am conscious of how severe my condition could be, how many people have it much worse than I do, but most days I still feel betrayed by my own body.

The ambiguity of my trembling is what catches the curiosity of those who do not know me. Even people I have known for a while, sometimes years, will often admit they hadn’t previously been aware of the rollercoaster my hands seem to ride.

I can say with certainty that a day has not passed in the last ten years where I have not been asked a concerned question directed towards my hands.

“Are you all right?”

“Are you nervous?”

“What’s wrong?”

“Are you cold?”

“Why are you shaking?”

The majority of the time, I explain calmly. Occasionally though, a stranger will come off offensive in their questioning, therefore triggering an emotional response. I rewind in my head to memories of peers in school who found my shaking a reason for mockery. I was often the butt of jokes, my disability often made into a punch line.

I feel awkward using the word disability sometimes due to the fact that the spectrum of it encases those with more severe problems. I am not wheelchair bound, I am not missing an arm or a leg, and I can do almost everything on my own without aid. While my disability may be quieter than most others, it is a loud, constant ringing in my ear. My disability is silent, creeping up on me at the exact moment I start to forget its existence. It is a catalyst to the attacks of anxiety I am flooded with. Some days, a wrongly worded inquiry can send me into a downward spiral of depression. When it comes to my mental state, my physical struggle plays a tremendous role and more important than that, the reaction of others to it.

I understand the interest and the desire to know the root of my shaking. . I can empathize with the concern exhibited towards my noticeable physical difference. The problem is not the conversation, but how we confront it. We are taught to hold our tongues when it comes to the topic of disability, something that is not the least bit beneficial. It is not about our query, but how we go about doing so.

“Are you okay?” Someone will ask me.

Most times, I am. I have to remind myself that while I am indeed okay, someone might not be when thinking that I am not.

“Yes.” I’ll smile in reply.

“My hands? They’re okay too.” TC mark

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