Shaking like a bowl of corn chowder
The Skinny Chronicles
February 26, 2020
WebMD defines essential tremors as a nerve disorder characterized by uncontrollable shaking, or “tremors,” in different parts and on different sides of the body. Areas affected often include the hands, arms, head, larynx (voice box), tongue, and chin.
I loved music videos when I was a kid, back when MTV actually played music videos 24 hours a day. My favorite video was Michael Jackson’s “Beat It.” Towards the end of the video, Michael engages with a fancy dancer in nice white pants. To begin the fight, each combatant’s right hand is tied to the others. In their free hand, each fighter has a knife. They dance beautifully together, each of them trying to stab the other while maintaining rhythm and street cred. Street fights were different in the eighties. At one point the video focuses on a gentleman wearing a Cleveland Indians baseball cap. The camera focuses on him as he breaks into some sort of choreographed full body shake. I had never seen anyone shake their whole body intentionally before. I saw the video and immediately set out to learn how to make my whole body shake all at once. My body shaking so hard that one could hear my teeth chattering. I thought it was funny back then. I showed all my friends and continued to so until my early twenties. That was a long time ago.
I have a twin sister that lives outside of Boston. We were very close growing up. That’s what twins are for. Ten years ago, or so, she informed me that she couldn’t stop shaking. That she had been to numerous doctors and they settled in on a diagnosis of Essential Tremor. She explained that it looks like Parkinson’s, the disease that inflicted Muhammad Ali and Michael J. Fox, but it’s not fatal. I watched her struggle with the pain and the shame. She was aware of people staring at her. She was aware of the whispers and the questions. Why was she shaking? She must have problems with alcohol or drugs. She must be weak. I saw her deal with all these things with good humor and grace. Every six months or so, she gets eight to ten Botox shots in her neck, to deal with some of the discomfort. She is a single mother raising three teenage kids. That is strength.
I don’t remember when my symptoms first appeared. I do remember thinking that it was anxiety. I assumed I had a hard time dealing with stress, which didn’t alarm me. I have always been a nervous fella. I started having difficulty with little things. Opening pill bottles, pouring my coffee in the morning, playing my guitar and singing. One morning I was brushing my teeth, looking at my reflection in the mirror, and I couldn’t keep my head still. In the mirror I could finally see my tremor. I thought to myself, if I can see it, that means other people can see it too. A week later, I got my diagnosis. My sister and I may have drifted apart a little over the years, life starts to get in the way of relationships sometimes. This diagnosis paved the way back to my sister. We are twins, we learned to share at an early age. We get to share as adults too.
There is no cure for Essential Tremor. There are no meds specifically designed to treat Essential Tremor. The meds I take are for other ailments, high blood pressure (which I don’t have), anxiety and depression. Somehow, these meds, designed to treat ailments that belong to other people, are supposed to help me navigate through life at life’s terms, not mine.
I keep my head down in public, when I go out in public, that is. The voice that once gave me so much joy, now lies hidden underneath a set of ticks and shakes. I could be angry. I could let this erase all the progress I have made in my personal life. I don’t have time for that. I keep moving forward. This is my ailment. This is the cross I am burdened with. I own this. I try not to be ashamed, but I fail sometimes. When I do, I get back up, because I have to.
Life is a constant series of assessments. You take a step. Gather your senses. Assess your situation. Take another step. Gather your senses. Assess your situation. I keep taking steps, gathering my senses, and assessing my situation. I keep moving forward. I don’t move as fast as when I was younger. My steps are a bit smaller, but I keep moving forward.
I keep hoping for the day MTV wants to reshoot the “Beat It” video. I have my Cleveland Indians hat ready. I got my shakes on.
So just “Beat it. No one wants to be defeated.”
Kim Reinike • Mar 9, 2020 at 2:07 am
This is so very true in every way and I am so saddened that you and your sister have both had to endure this disease but also, I am inspired by the strength and support that you both have for one another!
I was never able to have children and for a long time I did not understand why God choose not to bless me but I kept my faith and stood by his reasoning. I now know why, since this is a hereditary disease (mine came from my paternal grandmother that I never met), I am so glad I do not have to watch my child suffer through this…..
My biggest fight with this is how this is the #1 movement disorder in the world (add MS and Parkinsons together and ET is still the #1) and there are so little research and treatments for this disease and it is looked upon as just tremors or shakiness, no one talks about the balance issues, walking issues, memory issues, cognitive issues, the pain, and stiffness, the non-ability to write or drive, not being able to shower without handicap rails or chairs/stools, no longer being able to cook, work at a job you love, or do the things you love. Having to worry about who is going to take care of you as the disease progresses because it will progress…..
This is the fight I have, making people in general aware and keeping the medical professionals up to date and fight for our suffering like they do for MS and Parkinsons.
This disease may not be fatal but at times you wish it was…..At least I have.
I thank you for opening your life up and sharing the experience of you and your sister. I have been trying to spread awareness by doing a video journal via youtube and Facebook, here is my youtube channel…. https://www.youtube.com/channel/UCE4kqnhlzmaNABpkZPacI0A?view_as=subscriber
Please share what I have written and my youtube channel, I want and beg you to please do so, spread the awareness to as many people you can so we all with ET and out loved ones with ET can get more help and treatment as we well need and deserve!
Thank you!
Kim Reinike
Patrick McCartney • Mar 4, 2020 at 8:25 am
For more information on essential tremor check out the website for the International Essential Tremor Foundation at http://www.essentialtremor.org or call us toll free at 888-387-3667.