Mom's Plastic Brain
A guest post on motherhood and disability
This guest post is by Erin Ryan Heyneman of Rising and Gliding, a fantastic new Substack on the intersection of disability and culture. Erin is a disabled educator, mother, and tireless thinker, whose piece on taking her daughter to the Eras Tour while navigating her own access needs was the Taylor Swift content we didn’t know we needed.
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Erin has done me the honor of posting Part 2 of a three part series on motherhood and disability on Momspreading. You can read Part 1 and her between-parts Interlude on not being a hero on her Substack, and sign up for Rising and Gliding to make sure you don’t miss the final piece!
Mom’s Plastic Brain Part 2: The Mirror Box
In Part 1, Erin talks about how, as a mother of two and high school teacher in her thirties, a ‘stroke-mimicking’ flare of her “normally docile” Multiple Sclerosis paralyzed her on one side and rendered her disabled overnight. She ends up hospitalized for a month, rewiring her brain and body and relationship to herself. In Part 2, she writes about continuing her life at home, and rewiring her relationship to her family.
Back home in the Boston suburbs, life divided messily into the hallmark “before and after” of trauma. A joyful family reunion was easy for me to envision from the gentle quiet hours in the hospital. In reality, my homecoming only compounded my family’s fears and confusion. My four and six year old kids had experienced my absence as a painful and shocking loss of normalcy. When I got home, they saw that I was profoundly changed; their once active Mommy was in bed most of the day, rising for my PT and OT sessions before collapsing back into my room. The Mommy who had teased about too many bedtime stories was now out of breath and dizzy after one rhyming story. The kids began asking when I’d be “regular mommy” again.
Peter had taken on the burden of caring for two kids while working full time during a pandemic, and he was desperate for me to contribute to care tasks once I got home. We were both horrified to realize that I would actually add to his already full plate. On top of these discoveries, my brain reeled, dizzy from the sensory input of life with little kids: squeals of delight or protest, clanging dishes, quick movement of people and objects, these became triggers for intense brain fog and dizziness. We shared a collective frustration that I was not back in the ways any of us had expected. My pseudobulbar affect briefly worsened once home, and I remember ruining a family viewing of Disney’s 90s classic “Homeward Bound” (the voice-over dogs and kitty who get lost but return home). I couldn’t control my crying as Chance, the old dog we think has been lost, crests the horizon with a beautiful sunset behind him. He hobbles over the hill as Sassy the cat whispers, “Chance!” It’s a homecoming, and it’s beautiful. I saw myself reflected in Chance’s unsteady body. But I heaved and wailed and snotted so much that we’ve since banned the film from our home.
The pseudobulbar affect faded within months, and it was replaced by deep grief. I didn’t know that you could grieve for any major loss or change, not just a death. In time, I would come to embrace my disability as a valuable and major part of my identity, but not yet. My career as a high school English teacher was suspended and likely over. Over thirteen years, without my realizing it, “teacher” had become an important part of my identity. My colleagues were incredibly supportive, sending meaningful cards and gifts, but as soon as “back to school” media coverage started in the fall, I felt lost and without purpose. I mourned the ease with which I had once approached motherhood, too. Unsure of my new role in our family, I could barely help the kids pull their shoes on or remember what to put in their backpacks each morning. My purpose, for the moment at least, was to keep chipping away at the grueling and painstakingly slow recovery process. I was exhausted by the time I graduated from in-home to outpatient therapies.
Still, I trusted what I had learned about neuroplasticity in books like The Brain’s Way of Healing, and I continued the arduous task of in-home, then outpatient physical and occupational therapy. I’d begun practicing meditation in the hospital, as I had read that meditation can actually increase the amount of grey matter in the brain. I had actually begun a meditation practice years earlier, when I needed to find peace during the hectic hours I spent juggling childcare, grading, and cooking dinner, so I knew it could work. I started to notice that each time I made progress in something like walking on my left leg with fewer supports, I would experience a very specific brain fog: a dizzy / squishy / dull-headache feeling that I can only describe as “the sound of my brain working.” It felt strange but it also made sense - each time I repeated an activity that got me over a hurdle, my brain was literally rewiring itself in those moments. The “sound of my brain working” began to feel like proof that it was. When the sound overwhelmed me, I would retreat to a quiet spot to breathe and meditate until the nausea stopped.
I had been home for a few weeks and my arm continued in its state of flaccid paralysis. I remembered reading about a mirror box for paralyzed patients, but I hadn’t worked with this tool during my stay, and my in-home OT didn’t have training in the technology. After research into the work of Dr. VS Ramachandran, who developed the technology to help those who suffer with phantom limb pain, I found unofficial Youtube tutorials and I decided to try it for myself. I purchased a baseline model mirror box from mirrortherapy.com. It was the first but not last time I would experiment on myself. I figured it couldn’t hurt, could possibly help, and if it didn’t work out I would donate the equipment to an OT clinic in need.
A mirror box is not a box at all - it’s much more like a tent. You set up the bread-box size tent on a flat surface, with the side of the tent that has a mirror on its outside facing the middle space, between where your arms will go. After removing or covering all identifying jewelry, nail polish, and tattoos from both hands so that your hands look sufficiently similar to each other, you place your affected hand inside the tent, which is lined with black felt. Your affected hand “disappears,” and you, the patient, are left looking at one working hand, and a mirror perfectly reflecting that same hand. If you visualize hard enough, you begin to trick yourself into thinking that the mirror is not there at all, and both your hands are making the same simple movement. One tutorial I watched pressed this point: make small, simple gestures such as slowly lifting and dropping one finger, or tapping two fingers together - it’s easier to visualize something that seems doable for your brain, and over-doing it could cause headaches.
Once my mirror box was set up, I spoke aloud to myself, “I am doing this with both hands,” as I made simple tapping and sliding movements with my right hand. Before five minutes had passed, I was too dizzy to continue, and decided to try again later that day. Later, I made it to about 7 minutes before the familiar pain and dizziness of “my brain working” was overwhelming, and I stopped, stumbling away to meditate and calm myself down. I only used the mirror box for three days before my kids accidentally broke it, and each session my body reacted with the same intense nausea. When the box broke, I was honestly relieved - nothing had happened with my left hand, and the sick feeling was horrible. I put the entire experiment out of my mind.
The very next morning, something jolted me awake - I swore I had felt a flicker of movement and I needed to confirm it wasn’t a dream, so I stared at my left hand and started filming with my phone. My hand was open, and I told it to close. After 5 - 10 seconds, I watched the fingers lightly fold into my upturned palm. I rush into the kitchen where Peter is sipping his coffee, watching Whitney Houston performances on Youtube at 7AM. It’s July 27th. The camera keeps rolling as I try to explain the situation. In my excitement, I can’t get my fingers to move again, but I can feel my shoulder has “turned on,” and I swish my body around. If you look closely enough, you see that my left arm is being held ever-so-slightly aloft instead of totally limp or folded in as in other videos. Peter laughs and says, “What’s going on? Is it the Greatest Love of All?” “I think it’s the mirror box,” I whisper.
I have relapsing-remitting Multiple Sclerosis, meaning that periods of relapse are followed by periods of remission. It is possible that my MS went into spontaneous remission that lined up perfectly with my mirror box usage, but I don’t believe that’s what happened. The large crater in my brain should be proof that my left-side motor function is gone. The tissue that used to house the motor functions of my left side no longer exists. The logic of a hard-wired brain tells us that handwriting, swimming, balancing on one foot, and flipping on a light switch should have gone along with the tissue. But I can do all those things today. With neuroplasticity, you must will yourself, trick your own mind into the belief that you are doing things you know are not currently possible - it feels silly to even try, but it’s the act of trying that works.
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.
Also, this:
It’s the first night of Hannukah! Traditionally* our family celebrates the first night as “Dumpling Night,” but this weekend I’ll be making shit tons of latkes for all our friends, as I do every year. I used my mother’s fabulous recipe for years but then switched over to the Smitten Kitchen version with potato starch (sorry mom, love you!). I make them small-ish (the size of the bottom of a can) and pass them on trays with various toppings (creme fraiche and fish eggs or taramasalata is my modern addition). Happy holidays y’all, hope you get your hands on a nice crispy latke asap.
And, what I’ve been up to…
Did you know I provide consultation to parents who are navigating life with a neurodivergent child, on the journey of getting support or a diagnosis, needing support interfacing with schools, etc??? Hit me up if you wanna talk! I also work with schools to support inclusion and understanding neurodiversity.
I was asked to be a guest columnist for Sofia Warren’s super fun illustrated advice column, You’re Doing Great. I wrote (with Sofia’s amazing images) about finding connection with your children as they age and grow, and my own childhood experiences of connecting and disconnecting from my family.
We’re having a lot of fun over at my new podcast, talking about whether the holidays are actually fun with Sara Petersen, the Britney memoir with Amanda Montei, and modern feminism and whether we’re watering it down.
It means so much for me when you listen, and especially when you rate and review (it’s dumb but it helps us get to new listenders), and MOST OF ALL when you join us on Patreon, where we’re launching the Mother Culture Movie Club, dissecting mother characters in the movies we love (or don’t!).
My Good Enough Parent column over at Romper is crack-a-lacking! This week I share thoughts about a less-painful divorce from an incredible psychologist (and Momspreading reader!) Patricia Papernow.
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Wow, thanks for introducing me to Erin's work. Excited to read more. And yay for all the dynamic collabos in your life!