Facing Spasticity in Public

On a bright afternoon, I sit at the corner café, a cozy spot with chairs that don’t quite match and the delightful scent of freshly-brewed coffee. I choose a window seat, my arms finding respite on the wooden table.

I glance at the menu, my eyes tracing the words. My arms, those unpredictable companions, twitch. Gradually, my fingers tremble, and my forearm tightens. I recognize the familiar signs: impending spasticity. It is part of my multiple sclerosis. My nervous system staging a quiet rebellion.

When I get spastic in public

I weigh my options. Should I order the latte, risking the delicate balance of cup and saucer? I take a deep breath. The server approaches, their smile warm. “What can I get you?” they ask. The cup arrives, a piping hot challenge. I lift it carefully, willing my muscles to cooperate. The first sip is a victory. My arms comply, and the hot liquid warms my insides.

I glance around at the couple engrossed in conversation, the student hunched over a laptop. No one seems to notice. My fear is exaggerated, my self-consciousness unwarranted. In this moment, I conquer the invisible foe. I am super impressed with myself!

Yeah, right. I’m not that cool.

What you just read is a quaint tale that is nothing like what happens to me when I get spastic in public. It is not the dainty trembling of a cup on a saucer. It is more like dropping a small pitcher of sweet tea. I do worry about arm drops. It is often a quick and painful muscle spasm that results in an unconscious *ouch* that others clearly can hear. There is no mistaking who made the sound: me!

Fear and shame

Unlike many people living with multiple sclerosis, my spasticity is primarily in my arms and shoulders. My symptoms include arm drops, finger, trembles, and sudden stiffening of my limbs. An arm locked in place can mean minutes of avoiding any bodily movement, because it results in intense pain. I have to play wax figurine until my muscles decide to relax. Simply thinking about that happening while waiting in line or during a quiet moment in a film made me fearful.

When I say fear, I do not mean the heart-pounding fear you experience during a horror movie or the adrenaline rush of a roller coaster. Instead, it’s a quieter, indirect feeling that sneaks up on you. For me, it is the what ifs and the running endless scenarios through my head. These mental gymnastics also come along with another sensation.

Shame is an unwarranted and unfair judgement that we can spring on ourselves. It is a common feeling that can come with having a chronic illness. When symptoms of MS rear their heads in public, they call attention to me that I don’t want. I have felt embarrassed more than once because that dropped popcorn calls me as having something “wrong.”

Picking my battles

When I was first diagnosed, the fear of experiencing a painful spastic episode was not on my mind. I did get tiny arm drops occasionally. It was minor and fairly rare. As my symptoms progressed and my issues were more apparent, I began to fear having a public incident. It was as much for any companions as much for myself. I love my friends and family. I am fortunate to have a teeny tiny village. Although I know they don’t care, my pride has kept me from going to a few events.

Rather than run from every situation or charge outside in full battle mode, I decided to allow myself some kindness. I have fear and shame around public displays of MS pain. I know that I cannot control what my body decides to do in any moment. I am completely okay with that at home. I am not 100 percent there on the public end, but I do try to take fear and shame less into account when making my decisions. The less that I press myself, the less I stress myself.

How do you cope with public displays of MS pain?