Mom's Plastic Brain Part 3: The Neat Ending

And A New Year Beginning

Photo by Milad Fakurian on Unsplash

Happy New Year!

This is the final piece in the Mom’s Plastic Brain series. Thank you for following as I have shared about a catastrophic stroke-mimicking Multiple Sclerosis flare that inspired me to identify as disabled for the first time. Here is Part 1, Interlude, and Part 2 respectively. Huge thank you to

Sarah Wheeler

from

Momspreading

for sharing Part 2 on Momspreading!

I wrote this piece over the three years that have followed “my event” (stroke-mimicking multiple sclerosis flare that caused paralysis and concurrent concussion is a mouthful). My hope is that somebody else, newly hospitalized with the same or similar issue will find this piece and see themselves reflected. The first week of my hospitalization, I was horrified to learn that my condition was so rare that it was barely google-able. There were only one or two first person accounts online, which I read over and over and over. I offer “Mom’s Plastic Brain” in the hope that my lived experience helps another patient feel less alone.

Part 3: The Neat Ending

Part 1, Interlude, Part 2

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That single hand flicker on the morning of July 27th (coincidentally the same day I celebrated 10 years of living alcohol free) set off a rapid chain of recovery in my arm function - almost too fast. It’s possible that my use of the mirror box, pictured above, factored into the arm muscles coming online too quickly, and not in the order clinicians are used to seeing. Generally, movement returns at the shoulder (proximal) first, eventually working down to the fingertips (distal). Eventually, my arm returned to what might pass for normal function, with near full range of motion with decreased grip strength. I can move each of my five fingers on command. But ever since the six weeks of paralysis, my arm has had trouble remembering how to be at rest, or how it moves in space. The scapula, or shoulder blade, is a unique bone because it isn’t connected to any of the other bones in the traditional sense - rather it’s held in place by deep back muscles and connected by ligaments and soft tissue. When these muscles were disconnected from my brain for six weeks, they lost all memory of where they sat and how they were used. In fact, muscles begin to atrophy and “forget” after only about three days of paralysis, and mine lasted for longer than a month. Through occupational therapy, my back muscles became strong enough to use my arm and hand, but they never quite got the hang of resting comfortably or holding up my loosely hanging arm. At first this problem meant discomfort, but after months of overworked muscles and ligaments, the discomfort turned into serious and chronic nerve pain.

My new Occupational Therapist is Elizabeth is well-trained in the science of neuroplasticity, and we’ve worked together to create an exercise regimen that is helping. We use visualization and mirrors frequently - I’ll close my eyes and imagine my left side feeling exactly like my right side. In doing so, I make barely noticeable adjustments to my posture and we use the mirror to verify if I’ve gotten it. It’s slow progress, and chronic shoulder pain is another (invisible) outcome of my already unfortunate event. Surgery is on the table, but for now I manage pain and attempt to regain functional movement.

The author, wearing a shoulder brace, on a solo outing with their children

While the science of neuroplasticity has helped me regain many functions, I still can’t fill out a simple form or go on a spur of the moment trip. Brain fog and fatigue are daily struggles that I manage with breath work and meditation. My sense of self is still changing and I often feel adrift, purposeless. Though I have tried, I have not been able to successfully return to even part-time work. After more than twenty years of living with Multiple Sclerosis, I am disabled, and after three years of disability, I embrace the disabled person. I focus on what I can do, like drive a car, walk a mile, and volunteer at my kids’ school. I am grateful and happy to be here, and that’s all most people want to hear. It has been years after all, and I look good in still photographs. But my kids have forgotten about “regular mommy” already. And although they gasp at videos where I'm dancing, or writing, or lifting them high in the air, they never ask for her back. I mostly don’t either.

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Erin Ryan Heyneman is a disabled educator, creator, and speaker. She is also a Commissioner on her city’s Commission on Disability. Find the rest of her work here

Thanks for reading Rising and Gliding! I started this publication in order to fill the “disability gap” that persists in today’s media landscape. In only one year, we have reached thousands of readers, hundreds of subscribers, and tens of thousands of TikTok users through Erin’s channel. This year, we will be featuring guest posts by disabled writers and creatives, beginning with acclaimed poet Cristina Cortez. Disabled creatives, please reach out if you would like to collaborate!

If you are not currently disabled, I encourage you to subscribe (it’s free!). Because awareness is the first step to inclusion. Here’s to Rising and Gliding into 2024.