movements

The sun is on my face, the wind feels and smells as if I were at the beach. The pines are whispering. Through them, I hear the lonely drone of a small airplane. Despite the twinge in my back and hip, plus a tinge of melancholia, it feels good to be moving.

This morning, Calvin was not his best self. His recent conscious-onset morning seizures have put me on edge. They are typically rare, and lately have seemed to come out of nowhere. I’m afraid to send him to school lest one happens on the bus, in the hallways or classroom. Despite seeing hundreds of them over the years, they’re hard to take, and I can only imagine how they make him feel.

As I stroll down a sloping road, moving from one side of the black tarmac to the other while noting the big sky above me and amber fields spanning out from my flanks, I sink into my sadness and angst. I ponder their roots, which have taken ahold and perhaps manifested in my stiff, achy parts. I assume it’s simply the weight of the world: the damn protracted pandemic restricting our movements and gatherings; the war waged against Ukraine and elsewhere on this small, precious planet; the terrorism and suffering of so many innocent beings; too many deceitful, badgering, insincere, criminal leaders.

Then, I think about Calvin’s burdens: his inability to effectively communicate; his incontinence; his poor vision and coordination; his seizures; the drug side effects he suffers. He’s confined to his own little messed-up world in which his movements are greatly hindered.

And yet, my poor boy can’t sit still. He’s on and off our lap almost in the same moment. He often paces without purpose. He sits at the table for mere minutes, taking a few bites of food before being compelled by something to get up and move. I know what possesses and troubles him: impending seizures and, perhaps mostly, epilepsy drugs and the lingering effects of their withdrawal.

One of Calvin’s worst afflictions is a drug-induced movement disorder called akathisia, which, like most drug side effects, I have researched and diagnosed myself:

akathisia: akəˈTHiZHə-ˈTHizēə | noun | A state of agitation, distress, and restlessness that is an occasional side-effect of antipsychotic and antidepressant drugs.

and:

A movement disorder characterized by a feeling of inner restlessness and a compelling need or urge to be in constant movement [despite fatigue.]

For the longest time, I was convinced Calvin’s restlessness was just from years of taking benzodiazepines. More recently, however, I think it could also be from one of his current antiepileptic drugs, Keppra, aka leviteracetam, which he’s been taking for over ten years. I fear the (brain) damage from both drugs might be permanent.

I read the literature. It’s all there, documented on multiple reputable websites (my go-to is rxlist.com): Keppra can cause drug-induced movement disorders. Calvin’s akathisia manifests mostly in his restlessness and repetitive, aimless pacing, but I wonder if it’s also displayed by his jaw-jutting, teeth-grinding, hyperventilating, knee-knocking, frantic fingers (pill rolling), and what I call crab-clawing. I believe the akathisia is why he likes riding in the car and spinning in his jumper so much; they allow him to move without expending much energy. 

Drug-induced akathesia is a miserable affliction which causes some sufferers to feel so achingly restless, frantic and panicky that they take their own lives in desperation. I can’t begin to understand what a child like Calvin—who doesn’t grasp abstractions such as the notions of tomorrow, life and death—must be thinking or feeling when he is most afflicted, which is pretty much whenever he’s awake. I’ve seen him in states of panic, pain, serious discomfort, distress, malaise and misery, which are often impossible for me to alleviate (thankfully, though, extra doses of my homemade THCA cannabis oil seems to help.)

As I approach the final stretch of my walk, the sky is blue and painted with clouds. The sun is beating down. The wind is still sifting through my hair. The road is flat and smooth, and my bit of melancholia still lingers, though has lessened. I think about how amazing it would be if Calvin could walk these back roads with me without faltering or balking. Maybe the fresh air and quiet could somehow relieve some of his own troubles. Perhaps there’s a chance one day my wish could come true. I’ll keep embracing hope. Sometimes it’s the only thing to hold onto.

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