Dystonia

Sometimes when I enter my kitchen I want to scream. And it's not because of the Mylanta green paint job of the cabinets. (That was my previous place) Imagine standing still for a second, hands at your sides. You can feel the air moving past you. You feel strong, sturdy, and then you step forward. Foot picking up, surging through that same air and landing on the floor. It was just a step, no big deal. Right? Now to the point of screaming: imagine you go to move your foot again, but nothing happens. It's jarring at first, how your brain isn't connecting with your leg. You look down at your limbs those appendages you've had all your life. Suddenly you've taken for granted the will power you have. Never having to think or worry about something as simple as a step. Well, at least I never did until I was standing in my kitchen trying to walk and unable to move my legs at will. Finally after a few seconds of coaxing, my foot picked up in a rigid and clumsy manner. But it was a step forward. I tried to regain my balance, my eyes focusing on the kitchen tile. This is so stupid, I remember thinking, just walk Audrey. I moved my other leg, or so I thought it. After a few seconds it moved. I did this so many times in the day. It was so miniscule but the impact it made was devastating. I kept thinking move, just take a step. But then I didn't and I couldn't understand why.

I turned thirty-six years old this year. In a nest of dark brown hair, the few whites I have developed stick out. In all honesty, I am not quite certain how I am supposed to feel at this age. Am I supposed to feel the grievances of age? Am I too young? Truth is, I never planned on living this long, but here I am. Eyes bulging from my sockets as I stare at the kitchen floor. In those moments, I had more drive and desire that not even the little stains and spots could have distracted me. A small ball of dog fir blew across the linoleum like a tumbweed during the pivotal shootout in a western. I could hear the soft coaching of my husband as his grip tightened to keep me from stumbling. It's just a step, I pled. My foot rising up off the floor and down as I moved. I wanted to apologize to him, to tell him how sorry I was for tricking him. I felt so guilty. So different from when we first met. It's all been different since the symptoms started showing. But no matter when or where I am the soft assurance of his voice has never changed. He is continuously in my corner, fighting for me. From the troubled kitchen walks to the dystonia and spasms. He is there trying to pull me from a body I've lost complete control over. Lying on my bed, awake, and of sound mind, all of my senses are working. But suddenly I cannot move my body. I can grasp that time has changed, I can hear summer at my windows, the birds tweeting, I can smell the Gardena near the back door. I am functioning in every way possible except I can't physically move. Is there a word for this that conveys the fear, the uncertainty, and the depression I feel? Petrified? Panicked? That's how this disease or illness has made me feel. And I am petrified because there's nothing I can seemingly do to stop it. In the calm moments after I have regained my mobility, my mind wanders toward a sliver of hope. Hope that the Audrey prior to Long Covid is still a possibility. I am grateful with the pain and pressure gone. Even if for a fleeting moment, it's a moment I can draw again. A moment, I can play a video game, call a loved one, empty the dishwasher, or start a movie.

I will never forget the first time a tremor occurred in public. I was in the frozen foods of Publix. We had just about wrapped up our shopping. When down at my side, my left hand twitched. It started out small, just a finger or two, I remember trying to brush it off as nothing. During this time, tremors weren't as common as the spasming was. When my arms and legs spasmed it resembled what I could only assume an exorcism looks like. But as I stood there I could feel something different about it. I panicked, my eyes jumping from face to face of every passing person. I wished I was invisible, or that I could slink up into a Looney Tunes hole. I exchanged a plea with my husband who by then noticed my hand. He wrapped his hands around mine, trying his damnedest to slow the tremor. He knew how embarrassed I got in public places. But it grew to more than the two fingers. He handed me the car keys to make a swift exit, leaving the cart in the center of the aisle. All the while my hand picking up speed. And I am suddenly very aware of my existence as the isolation seemingly separates me. I am terrified that the outlandish cartoon-style of my shaking will bring unwanted attention. That dragging my feet behind me will disrupt every quiet space I step into. Eyes flocking my way watching the strange Igor-ish creature fetching Frankenstein's monster's brain. Normality is no longer a part of my vocabulary. Although I'd do anything to feel it once again. To feel confident and assured in my steps. Rather than clumsy in them.

In cruel irony, my mind will periodically wander back to 2022. When my only fear was a staircase, or a steep incline. I still had some semblance of myself rather than the misshapen creature that shook or writhed in pain. It is the strangest feeling and extremely sobering to witness your self-decline. To see the arms you had your whole life, that created crazy works of art and even a novel, suddenly lie limp. Unable to accomplish simple tasks. Or shake so violently that it just about knocks you off your feet. But worst of all, curl into this death grip resembling a talon. To look at those disfigured fingers, almost willing them to move. Or watching my own feet, sensing that something was off. Feeling every joint pop as if I was a werewolf in a 1980s horror film. To feel so foreign to myself, making it hard not to analyze every little tic. I wouldn't wish this on anyone.

#MentalHealth #Anxiety #bodymovementdisorder #Article #scared #essay

Functional Neurological Disorder (FND) is a debilitating condition that causes a wide variety of symptoms. Although there are lots of similarities in the symptoms that a person experiences, the variety of the symptoms & the severity of those symptoms differ greatly from one person to another. This is where ‘FND Bingo’ comes in – it is an interactive way to help to raise awareness of FND as a condition; shows the variety of symptoms associated with it & how these debilitating symptoms are as unique as the individual experiencing them. The original image, now known as the ‘FND Bingo Card’ (created by @functionallyjess), consists of 15 of the more common symptoms of FND – Functional Seizure, Dizziness, Walking Difficulty, Weakness, Dystonia, Migraine, Chronic Pain, Numbness, Memory Issues, Sleep Issues, Functional Tremors, Paralysis, Sensory Issues, Swallowing Issues & Spasms. A sample of 25 of these FND Bingo Cards indicate how common these symptoms are among people living with FND. No matter how FND impacts you, there are people who understand the challenges you face.
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@fndhope @sassyfndlife #FunctionalNeurologicalDisorder