Symptomatic

My symptoms of FND present as motor deficits - tremors and spasms with muscle weakness, fatigue, and a tingly numbness in all four limbs. After waking up, and sometimes through the day, I couldn’t walk without supporting myself on furniture or whatever was nearby. Sprinkle in changes in cognition such as opening the fridge instead of the cupboard to put a plate away, and it made for a scary year and a half before I was diagnosed with Functional Neurological Disorder.

In taking this photo now that I have improved, my difficulty portraying symptoms support Edwards, Yogarajah and Stone’s work showing how FND is not feigning or malingering, so instead I try to show how the tremors and spasms felt - a sense of losing my footing and control, as if about to fall from a rock face. In my mid thirties the depression I struggled with was internal, something kept hidden from those around me, but with FND I felt exposed. The red hues suggest the pain, fear, and sense of danger that those of us with FND experience.

A Fine Mask

Societal norms have us ask when we meet, “How are you doing?” and most times we answer, “I’m fine, how are you?” before moving on. We rarely are, but who has time to get into all the details of the not fine parts? This convention is tougher to manage when dealing with disabilities, especially when the other person or people have no idea what FND is. Who can blame them, when we barely have a handle on what is going on ourselves?

Simpler to hide behind “fine” and put on the mask, though my eyes and the obviously fake smiley button reveal what’s going on behind the façade. “Do I look fine to you?” Although I was drawn to the imagery of the dark circle I’m standing in, I’m still not sure what it means. Is it a boundary restricting my movements? Is it a pit I’m hovering over, about to fall into at any time?

This image was taken by my lovely partner in time, who has seen the full Monty of my FND and has always supported me through it all.

Hostage

Often it felt as if the natural movement I had previously never given a thought to was being held hostage by forces I didn’t understand. Why me? Why couldn’t I free myself from this disorder, no matter how hard I tried? It sure seemed like, when all the tests were coming back normal, I was my own captor (the handwritten line) - but why? What was to be gained, and how?

I was very fortunate to have been seen by an FND specialist neuropsychiatrist, Dr. Mohamed Gheis, who pointed me to the work of Karl Friston and Anil Seth, among others. They helped me understand how our brains’ predictive “best guess” way of operating needs sensory feedback to support and refine the predictions, keeping us alive and moving through our environment. This is where the symptoms of FND seem to reside - at the intersections of those signal flow lines, and much more research is needed to understand what gives rise to the dysfunction. The hostage note concludes with an oblique appeal to medicine for treatments toward better health.

Still.  Moving.

The neurologist who diagnosed FND told me what differentiated FND from Parkinson’s was that FND tremors were distractible. If I was directed to do a task with the right hand the tremors in my left diminished or stopped, a rule in sign for FND. This prompted me to purchase the camera held in the photo, along with a tripod, as I couldn’t steady the camera in my hands. The tremors and spasms would fade away while I focused on composing an image in the viewfinder, so I practiced this kind of moving – stillness – as a type of therapy. Over many, many months ordered motion was restored for longer periods of time.

The person who took this image was also integral in guiding valuable movement back to my body, so it was personally meaningful they captured the photo. As a Registered Massage Therapist with a background in dance, they were able to help me strengthen connections with the muscles and tissue that, through a lifetime of injuries, work posture constraints and frankly just getting older, my body had developed awkward work arounds for. These life hacks had my body fighting itself in ways I never paid attention to, and as someone who previously believed my body’s main function was to move my important brain about the environment to do think-y stuff, I have come to terms with how necessary a balanced, integrated, and present body awareness was for free and ordered movement.

Still. Moving. Balanced. Mindful, but in a way unique to me. Able to leave the tripod behind most times. I am becoming healthier, so I am very grateful for everyone who has helped on this journey!