TikTok, Neuroplasticity, and Belief
How ideas turn into writing and how belief becomes reality
CN: Paralysis, Hospitals
The purpose of my TikTok account is to share my lived experience with Multiple Sclerosis specifically and disability more generally. I often share information about how the science of neuroplasticity played a role in my recovery from a major MS flare. While I enjoy making these videos, it sometimes feels like I create videos when I should be writing. It recently dawned on me that these TikTok videos play an important (maybe essential) part of my writing process. I have recorded several videos and chosen not to post them upon realizing that the idea I’m sharing is better-suited to an article where I can get specific about details (and grow my audience!). For context, I lost the ability to reliably write (both pen/paper and with a keyboard) with my dominant left hand in 2020, when I was paralyzed on the left side of my body for over a month. While I can write and type today, it’s physically painful - and I struggle with thinking much faster than I can write. Dictation has become my best option, but dictation still doesn’t feel like “writing” to me. TikToks, on the other hand, force me to consider length of sentences, my cadence, and overall structure; ultimately these videos come closer to the goal of a written piece.
I recently posted a video explaining my experience with neuroplasticity in paralysis recovery. As an experiment, I decided to take the captioned text of a video, complete with the natural verbal filler like “um,” “like,” and “so anyway,” and edit as if it were a first draft. My casual tone and register is obvious when the piece is written out. But the ideas sound logical when spoken because there is nothing wrong with using filler words in casual conversation. In fact, filler words can be a useful stand-in for a feeling that you don’t want to spend all day describing. So I cleaned it up. After editing, here is the piece that came out of that original video:
You may have heard about neuroplasticity, which is the brain’s ability to rewire itself in the face of trauma or learning, such as a traumatic brain injury to the brain, a traumatic event emotionally, or when learning a new skill. I had both trauma to the brain caused by a Multiple Sclerosis flare and physical trauma caused by a fall. The aftermath of these events is plainly apparent on the MRI taken six months later, pictured below. The large “hole” you see is on the right side of the screen (my right brain) in an area called the motor strip. Since the right brain controls the left side, my left side was totally paralyzed for over a month. In order for me to regain function, the circuits of firing neurons needed to figure out a path around the injury. During my month-long hospital stay, I became fascinated by the idea that our brains can adapt and change, and I began to read about neuroplasticity from my hospital bed. I read two popular science texts on Neuroplasticity, both by Canadian neuropsychologist Dr. Norman Doidge. In both The Brain That Changes Itself (2001) and its 2011 followup The Brain’s Way of Healing Doidge gives nearly miraculous accounts of patients who refused to listen to the “brain as machine” theory and try neuroplasticity exercises for themselves. After reading those books, I felt like I had proof (which is silly because proof is the opposite of belief) that neuroplasticity could work in my favor.
I have been an active member of various online MS support groups for decades, and I reached out for support when I was initially paralyzed. In hearing personal stories from group members, I realized that other people have healed from major, paralyzing MS flares, too. Armed with knowledge and a supportive community, I developed a very deep belief that I could use modalities like meditation, repetitive exercise, and brain-fog reducing breath-work to eventually get most of my physical functions back.
A specific meditation from Meditations by Marissa was particularly useful for me. In this guided practice, Marissa Peer asks you to (for a moment) put away sickness, illness, or whatever is impairing you, and to believe in your core (in your jellies as my kids say) that there is no problem within your brain or your extremities. This is obviously false - for example, I have impairments in both my brain and my extremities! But listening to that episode at least once a day for months seemed to have an effect - reduced brain fog, clearer thinking, and continually improving motor control. Perhaps I just felt relaxed enough to truly rest which in turn helped me get better. But it’s also possible that letting myself believe in my own healing “tricked” my brain into rewiring itself in an optimal way. Now, I should be clear here that I am and will always be disabled. Meditation did not and will not cure my Multiple Sclerosis, and there would be nothing wrong if I had not “recovered” at all. Mobility aids are morally neutral and I use them frequently. I share this story as a personal investigation into my journey with the mysteries of the brain.
Today I am about seventy percent physically “better,” but I’m completely changed as an individual. Achieving muscle return wasn't just about meditation, and no rehabilitation modality helped right away. For me, meditation was one piece of a massive puzzle and journey that lasted three years and continues today. My recovery included occupational, physical, and vestibular therapies, and repeating short exercises for hundreds of hours. I have another video on my TikTok called the Neuro-plasticity Dilemma. In that video, I describe how I actually had a much more severe brain injury than I or my doctors new about on the night I got sick. It's a bit of a medical mystery how I actually recovered from my injury. With so much damage to the right side of my brain, I should not (technically speaking) be able to do many of the things I can do today. And without any knowledge (or MRI visuals) of what had happened on the inside of my body, I had no reason to doubt what could happen on the outside of my body. Belief could be defined as faith in an unknown outcome, or the absence of doubt. I simply had no reason to doubt a positive outcome when I was recovering, and I can’t rule out the possibility that belief played a part in that journey.
Here is my original video, if you’d like to see the beginning of my writing process!
Erin Ryan Heyneman (she/her) 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. Oh, and please excuse general typos in this post; Erin has a disability that requires dictation of most messages, but don’t hesitate to reach out if she’s said something truly confusing!