The Jerk: A Dystonia Tale

At the age of 15 I was involved in an ATV 3-Wheeler accident. The day after, I awoke to violent, rapid head-jerking muscle spasms turning & twisting my neck uncontrollably to the left. I simply could not stop. This continued for 9 months – I couldn’t eat sitting up, walk or move about properly, and was unable to attend school. Doctors were bewildered. After months of doctors visits, specialists, physical therapy, MRIs, CT scans, hospitalization and dozens of drug combinations I was diagnosed with Cervical Dystonia. A neurological disorder that causes involuntary body movements whereby you struggle with your own muscles to walk, speak, see, write, or simply be still depending on which form of dystonia you contract. There is no cure and treatments are limited to quarterly botulin toxin injections, medications and Deep Brain Stimulation surgery (DBS) for the most severe cases. The following is my attempt to give you an understanding of my daily life and 33 year battle with “the Jerk”.

The jerk steals more than just your physical abilities from you it takes away your very confidence. Leaving you with a vacuum of weakness in the muscular and nervous systems while at the same time removing pieces of your mental courage like a vile, destructive thief preying upon you day and night.

Any strand of normalcy soon becomes a distant memory as the fight left within you quickly vanishes and you are slowly replaced with a mere shell of your pathetic self. All sense of dignity and poise takes a backseat to this crooked, shaking individual with incredibly bizarre body formations and tilted, twisted head movements that are unceasing. You soon begin to wonder if life will regain balance and whether you can ever look into a person’s face with the character of who you truly are and not the shadowy hue of dull personality you must now portray.

If invisibility could be achieved it would be the one item you could look forward to in a world now casting a cruel spotlight on the chief oddity you have unwillingly turned into. Not even your thoughts allow you a morsel of peace as the movement entity betrays your sensibilities at every turn, in every wakeful hour. Mercy seems so far from your grasp as life takes a dark and downward spiral into the murky waters of incapacity. All the while you struggle to hold onto the capable and cheerful person you once remember yourself to be.

In the midst of it all, those closest to you are powerless to help you in this great internal battle now laying claim to you. There is no understanding in this dark forest of misfiring nerve endings and the mass overproduction of acetylcholine within the brain making your muscles move involuntarily and causing such abnormality in face, neck, head and body postures. At some moments revealed in very violent episodes of unstoppable jerking and twisting, whipping you about and thrashing your body against itself. And still others occurring less sporadic but leaving you oddly positioned and overpowered by invisible spasms in key muscle groups in the shoulders, upper back and neck.

The ebbs and flows of great fear developing and expanding as you realize that the only force in the world in your favor, modern medicine, is as helpless and empty of solutions as you are of hope. How you can ever break free of this mindful destructive nature seated somewhere in the deepest confines of your very own mind truly escapes you. Their one answer comes in the form of medicating you to the point of a seemingly constant state of delirium where your senses are dulled immensely.

The only solution is in finding that which will block the erroneous chemical messages being mass produced by the brain telling certain muscle groups to “move, move, move…continuously.” All the while your eyes and your body know that these are the wrong commands. The wrong actions being taken by another self.

This is betrayal of the highest standard from a place more primal and yet also the most intimate of structures possible. You have truly entered the greatest fight with your very self that you will ever undertake. Both in the mental and physical realms you have wandered into a new mysterious landscape where no one possesses a map and there are most certainly no tour guides. You are in this all alone so take good notes. This is your body. This is your mind. This is your life.

Perhaps the most challenging part of this lonely battle is how much you need others to be a part of your life; not just passengers but greater participants as intimacy is so much more vital and at the same time so much more fleeting. Expressing your needs when you are fighting to understand them yourself can be that much more painful than the very physical strains you now endure.

If hell ever had a playground it would certainly rest squarely between one’s shoulders, a place from which there would be no escape.

Dystonia is not a disorder one enters into voluntarily, but unfortunately far too many are conscripted for the remainder of their lifetime. If hell ever had a playground it would certainly rest squarely between one’s shoulders, a place from which there would be no escape.

Some days I am a great warrior and champion fighting back dystonia with every ounce of determination in me and still other days I cower quietly in the darkness scraping at mere inches of progress wishing I was someone else entirely. More often than not I find myself in the latter state of affairs, so much more than I would be willing to admit.

Suffering comes in waves, often camouflaged by tremendous spaces of pain and distorted reality, interspersed with glimmers of hope and genuine happiness. If only for the moment. If only…

As the years progress and you better understand yourself and your personalized version of this disorder so too emerges your strategy and eventual battle plan. You may lose many small battles along the way, but you have not surrendered the war. You will grow stronger in the midst of your weakness. All those days of despair and nights of anguish; all of those incredibly humiliating and socially awkward events that you thought were the very end of you will shudder back and echo into the corridors of your life…with a small whisper: “You don’t have me.”

Your life will unfold and unfurl like a glorious flag in a whipping wind proclaiming that you have stood your ground, that you will fight on another day. Character is not found in the cheery times this world honors us with trinkets of achievement or trophies of worldly excellence; no, character is wrought and wrung out of moments of egregious humiliation and suffering. Character emerges in response to you defying all the lowest times life has pushed you down only to raise your head for another round.

This disorder does not confront you meekly, it emerges like a flash of lightning in a fast approaching storm and seeks to consume every aspect of your being. To be victorious you will need to shed any semblance of pride, this fight will not leave you with an externally enticing image. If you want to win the war you will have to let go of your desire to be the popular socialite and don the armor of the awkward warrior who needs no approval for the decision to live fully and unapologetically in spite of all the shortcomings that surround you.

You will lose friends, or rather false friends, and other assorted social animals but with your new weaknesses will also emerge new found strengths. You will gain the ability to be a better judge of character, you will appreciate the time you have as the window of functionality becomes smaller. Life will be less about the work you perform and more about quality; spending quality time with quality people, pouring yourself into worthwhile causes and finding worthwhile opportunities.

When you have your life slighted by the viciousness of dystonia you will find yourself less accepting of negative people and negative circumstances. Developing into a positive, powerful force of hope you will grow in stature and strength quite unbeknownst to yourself. These attributes will follow after the humble and brokenhearted who will come to recognize the very same in the struggles of others.

The only certainty in this life my friends is that nothing is certain, even life itself. However, we can certainly be better individuals for ourselves and with how we treat others. There is enough pain and anguish to go around for everyone, in the middle of your extreme and unchosen hardship, dystonia, springs forth the opportunity to choose the higher ground and give rise to a powerful movement in a bold new direction. We can choose to languish in our lowliness or in the same instance reach further and higher than we ever have before.

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