Last month, September, in 2020, I got slightly distracted, from my accustomed way of life, by a doctor entering a hospital room to inform me that I had six TIAs and a stroke. It was a multi-focal, bilateral cerebellar stroke. Two hemispheres of my cerebellum got damaged, more damage on the left, but some on the right. At that point, I couldn’t walk nor understand my relation to physical space but I was still breathing and coherent, so I guess there was nothing else for it but to unravel myself from this bewildering state.
Everyday, these days, I awake and I say to myself, 'Right, I have twenty-four hours," and that is the sum of my life until the next twenty-four hours. The symptoms are milder but not any easier. The idea of kicking back and relaxing is a luxury to me. I have moments of reprieve, and that’s what I seek. Delicious moments where I feel as if I hadn’t any troubles at all. These occur at odd times, mainly in the morning when my brain hasn’t properly started communicating with my central nervous system. Other times, it’s after a few beers or when completely immersed in company. It’s a strange and uncomfortable existence, peppered with thoughts of further complications or a plateau of a dysfunctional last leg of my life’s journey.
When symptoms are acute, it’s a bit like how I imagine bungee jumping is, I don’t want to backtrack and let fear stop me from stepping forward, but it is still exhausting. In theory, everyday movement should be rehabilitating my symptoms, and still I’m creeping along with progress, but I suspect certain psychological obstructions may impede this process a little. The cerebellum is a complex and under-studied part of the brain, and I suspect there is little understanding of the effects of Schmahmann’s syndrome from the perspective of a stroke survivor. I imagine my cerebellum like a city, what got blitzed? There were six transient attacks, maybe striking some major infrastructure, disabling it but in that moment, putting offline other integral networks. The two strokes, left and right; the left disrupting transport facilities and observational units, and the right hitting libraries and assemblies. What a mess. What a clean up.
The ongoing complication, with it all, is that four years ago, I was a younger, fitter fellow and subsequently have aged, no doubt with deterioration associated with aging, other bodily erosion, and the weakened state of my corporeal being. Not to mention the challenge to my mental state, which has defended its sanity like the Black Knight from Monty Python and The Holy Grail, “'Tis but a scratch.” - “A scratch? Your arm’s off.” - “No, it isn’t.” - “Well, what’s that then?” - “I’ve had worse.”.
So, what are my residual symptoms? Well, residual from stroke is ongoing visual/spatial confusion. I can be walking and depth of field narrows which means I slow down but then the field of vision increases, causing me to stumble slightly. The nystagmus can be quite intense at times, so much so I can almost feel it in my eyes. I believe I have vertical and horizontal nystagmus and, as far as I know, there is no cure or rehabilitation for it. Dyspnoea is still oppressive at times, even with controlled breathing techniques to put my mind at rest that I am not slowly suffocating. Brain has its energy easily zapped by cognitive activities, particularly following information and absorbing it. Working memory can still be a little undependable but other memory functions have actually improved and exceeded functionality prior to stroke. I have a strange dichotomy between target fixation and low levels of concentration. Mind seems to be able to interpret and react very quickly on its own terms, but is slow in responding to stimulus. Tinnitus and auditory overload still persist. Have days when nothing soothes.
That wraps up four years with my five year personal review of symptoms coming up next year in 2025. I don’t look to recover completely, but would rather just pootle along the passing years, trying to be productive and sensory, until it’s my time to exit stage left.