STILL LIFE MOVES
DOUG MCLEOD
Symptomatic
My symptoms include tremors, spasms, muscle weakness, fatigue, and tingly numbness in my limbs. I regularly woke up, unable to walk, without supporting myself on whatever objects were nearby. Sprinkle in cognition changes like 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.Now that I‘ve improved, I found it difficult to portray my symptoms, supporting Edwards et al’s 2023 article showing how FND isn’t feigning or malingering. 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 can accompany FND.
A Fine Mask
Upon meeting, societal norms have us ask: “How are you doing?” and answer, “I’m fine, how are you?” We rarely are, but who has time to get into the details? This convention is tough to manage with disabilities, especially when others have no idea what FND is. Who can blame them, when we barely have a handle on it ourselves? Simpler to hide behind “fine” and put on a mask, yet my eyes and the obviously fake smiley button reveal what’s behind the façade. “Do I look fine to you?” I was drawn to the imagery of the dark circle I’m standing in but 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 partner in time, who has seen the full Monty of my FND and supported me through it all.
Hostage
Often it felt like the natural movement I’d taken for granted was 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 seemed like, when all the tests were “normal,” I was my captor. Why? What was to be gained by captivity? How could I escape? I was fortunate to see an FND specialist, Dr. Gheis, who introduced Karl Friston and Anil Seth’s research. They helped me understand how our brains’ predictive “best guess” function needs sensory feedback to refine its predictions to keep us alive and moving through our environment. This may be where FND symptoms reside - at the intersections of these signals, and research is needed to understand what causes the dysfunction.The hostage note ends with an oblique appeal to medicine for treatment toward better health.
Still. Moving.
A neurologist explained how FND tremors differ from Parkinson’s because they are distractible. If I completed a task with my right hand, the tremors in my left diminished, a rule in sign for FND. This prompted me to purchase the camera pictured, and a tripod, to steady myself. My tremors and spasms would fade while I composed an image in the viewfinder. I practiced this kind of moving – stillness – as therapy. Over many months, ordered motion was restored for longer periods. The person who took this photo was integral to guiding such movement back to my body, making it especially meaningful. An RMT with a dance background, they helped me strengthen connections between tissues that, through a lifetime of injuries, posture constraints, and aging, my body developed awkward workarounds for that I was unaware of. As someone who once thought my body’s main function was to move my important brain around to do think-y stuff, I have realized how necessary a balanced, integrated, and present body awareness is 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 and am grateful to everyone who has helped this journey
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