“Grandma, why are you shaking your head?” asked my three-year-old grandson as I tucked him into bed when he stayed overnight. A few days later a salesman at a furniture store asked my husband and me if he could show us some couches. “No?” he said, looking at me in surprise. He obviously noticed my head shaking and thought I had no interest in his furniture. “Yes,” I said, embarrassed.
It turns out that my dip into the gene pool netted me a mutation that causes Essential Tremor. It lurked silently until my early forties, when I developed an on-again off-again neck tremor that my family began noticing and commenting on. I had no idea my head was shaking, and mostly still don’t know when it’s happening. Once in awhile, looking in the mirror, I’m surprised to see my reflection shaking its head at me.
Nobody knows what causes Essential Tremor, often mistaken for Parkinson’s Disease, progressive but not fatal. There are millions of us with Essential Tremor. Hand and arm tremors are the most common, often so bad that the sufferer can’t hold a fork or a glass, or sign their name. Less common are the side-to-side neck tremor (the no-no- tremor) and the up and down neck tremor (the yes-yes tremor). I have the no-no tremor. Too much caffeine, too much stress, and physical fatigue make it temporarily worse.
The neurologist who diagnosed me prescribed a pill I could take occasionally to control the tremor. Unless I’m dying or have an infection, I don’t take any meds until I research them. This prescription was for a beta-blocker, primarily used to treat high blood pressure. It can cause side effects like light-headedness and dizziness. No thanks. My blood pressure is already remarkably low, so I fear that if I take the medication I’ll immediately pass out. I also have the option of anti-epilepsy drugs, anti-depressants or botox injections. None are without side effects, and I’ve so far refused them all.
And so I live with the tremor, not usually aware when my head is shaking unless someone mentions it, or I hear through the grapevine that someone believes I have Parkinson’s. I’ve gotten quite self-conscious. When I’m out and about I wonder if I’m no-no-ing, and what people are thinking when I appear to be disagreeing with what they’re saying to me. Whenever possible, I’ve adopted a thoughtful chin-resting-on-the-hand position, which is actually an attempt to keep my head steady, just in case. I may never know all the ways the tremor has affected my life. Do people avoid me because of my shaking head? Do they see me as debilitated? Is the tremor the real, unstated reason I lost my job two years ago? Was I just too embarrassing to be seen at a piano on a stage? These questions sometimes keep me awake at night.
Why am I bringing this up? Wouldn’t it better to leave it alone? Well, because if you know me, you’ve noticed my tremor and there’s no point in ignoring it. And because March is National Essential Tremor Awareness Month. And because I want you to understand that I’m still me, even though this tremor makes me feel less than I am.
Essential Tremor has given me a glimpse into the world of those with serious physical handicaps. I believe that they want you to see them, not the wheelchair. To look at them, not the cane. To listen to what they’re saying, and not be staring at the twisted feet or the stooped back. To not ignore or minimize them because their physical appearance or strange movements make you uncomfortable.
We behave this way around people with impairments because being confronted with them is a startling reminder that, even if we’re currently walking around well and whole, we’re only one accident, or one illness, or one rebellious gene away from losing our wellness and wholeness. Who wants to face that?
There’s no question that we humans are bound to our bodies, largely defined by them, limited by them. But we’re so much more than our bodies. I think I speak for many people who want you to know we are not our condition or our disease or our handicap. We’re just us.