Multiple Sclerosis. Concussion. Stroke. Traumatic Brain Injury (TBI). Long Covid. Diseases of and injuries to the Central Nervous System (CNS) are always patient-specific and rarely follow traditional narratives we are used to seeing in American culture. Usually, when a person gets sick or injured, they are expected to work hard and “fight” to get “back to normal.” We’ve told ourselves these stories often enough that they have become recognizable patterns or tropes. The “positive attitude overcomes” trope, the “disabled hero” trope, the “worked hard, got better, thankful for the blessings” trope. Even the idea of getting “better” implies that a person is becoming less disabled. Disability is rarely the central focus in our media landscape, and when it is, the portrayal of disability skews hard toward hopeful and heartwarming. Think nightly newscasters with pitying smiles and sappy background music. These narratives have never reflected my lived experience, and at times they have gotten in the way of self-acceptance.
I’ll never be “better” in a world that sees full recovery or inspiring story as the only acceptable outcomes.
I know that mine is a story of facing challenges, of digging deep and trying new things: the stuff that montages are made of. But the problem in even writing this story is that it will tie up neatly (it is an essay after all), and I risk lateral ableism in describing my rehabilitation as some kind of success story. For example, my motor function (or lack of) is due to Multiple Sclerosis, which relapses and goes into remission. Those with certain spinal cord injuries cannot replicate my experience - it’s lateral ableism to describe my recovery as a triumph when others live full, happy lives with more limitations than me. I am and will always be disabled, and there is nothing wrong with being disabled full stop. I am also a white, college-educated mom with all the privilege that entails. When I got really sick, doctors listened to and believed me. I received excellent care at one of the best rehabilitation hospitals in the world, and Peter’s salary allowed me to devote time to recovery and experiments with neuroplasticity. And I still suffer with chronic pain and debilitating fatigue from a disease with no cure. I’ll never be “better” in a world that sees full recovery or inspiring story as the only acceptable outcomes. In the aftermath of my flare, I rapidly lost thirty pounds because my appetite disappeared. Well-meaning friends and family told me I looked great, and I was such a fighter. I wanted to tell them how scared I was by the sudden weight loss, how fighter is not the word I’d choose (navigator, maybe), how people with disabilities have no other choice but to exist and adapt. I am proud to be part of the disability community, and I share my story for three reasons:
First, to educate a wide audience on what it feels like to become suddenly disabled, or live with a chronic illness, or both. The horror I experienced upon becoming disabled was due to internalized ableism that I had developed by living in a culture that views disability as something frightening that happens to other people (and isn’t it nice to see them overcoming it). I now know that anyone can become disabled at any time, and the general public should face stories like mine, often.
Second, to reach those who are newly disabled, to share what I have learned about neuroplasticity as something to try, especially if the medical system has offered the bare minimum of physical rehabilitation.
Third and finally, I hope to use my story to push clinicians to become more familiar with the science of neuroplasticity. Even some of my best therapists didn’t know the work of Dr. Doidge or Dr. Ramachandran, and I encourage clinicians to listen to patients who want to push the limits set forth in “best practices.” The stories that make up Norman Doidge’s The Brain That Changes Itself are proof that our knowledge of the human brain is scant at best. The more we as patients share our lived experiences, the more information we will have about the possibilities of neuroplasticity.
This piece is an interlude in my three part series, Mom’s Plastic Brain. Part two will be released in collaboration with Wheeler and her Momspreading Newsletter! Subscribe to Momspreading for insightful parenting and lifestyle essays, and to be alerted when Part 2 Goes live!
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 suggesting the word "navigator" in place of "fighter." Your writing always reminds me how important our words are.
I agree so much here. Neuroplasticity, and pushing the limits set forth in so called ‘best practices’ should be the norm for all practitioners, myself included. I think noticing the patient for the human they are, and believing that they are capable in achieving goals they set for themselves, is foundational to any treatment/healing/personal growth.