Sarah Goodman, right, with friend Tanya Greve.Liyat Benchetrit/Supplied
Sarah Goodman is a screenwriter and director whose credits include Army of One and Porch Stories.
I remember when I hit rock bottom. My husband would say this came when I sat motionless in a chair and couldn’t go down the stairs, but it was actually before that, during a visit to my nephews on a warm day in November.
We were on their back deck. The two boys were excited to have visitors – this was the middle of the pandemic – and were throwing balls in the air, zooming small cars along the ground and drawing with chalk, all seemingly at the same time. As they ran circles around me, I wanted more than anything to join in, but was frozen by their assault of visual motion and noise.
Their little faces, so alive, so joyous, ripped my heart out. The sensations in my head terrified me. I was not present. I was far away in a dark, narrow place where no one could help.
I slipped away into the house and sat at the kitchen table. It was quiet. My sister-in-law had arranged a bouquet of sunflowers. On the walls, bright crayon drawings. I sat there and cried for a long time. The awful sensations in my head were consuming me, alienating me from my own life. Here it was, two years after my stupid injury, and I was still so messed up.
My parents arrived. The pain in their eyes as they reckoned with this broken version of me was too much to bear. I longed to go back in time and undo my grave mistake.
In December, 2019, I was a stressed out staffer in the writers room of a TV show that was over-budget and out of time. As I grabbed my lunch one day from the kitchen, I considered whether it had been an error not to get a can of club soda. I decided it was. I’ve regretted that decision for a long time.
It was off-brand soda. There was only one can left, at the very back. I inserted the top half of my body into the fridge and reached for it. Thinking about everything I still had to do, I stood up with a surprising amount of force. The one thing I didn’t consider was that I was still bodily inside the fridge. And that’s when the freezer door attacked me.
Oh no. You’ve done it.
Fear seeped in immediately. A darkness inside me, a voice I knew well. The ER doctor described my injury as “mild” and filled out a WSIB form that indicated, among other things, that I was able to operate heavy machinery. In the cab ride home I looked out at the night and felt a creeping dread, and a voice warning me.
They say you’ll get better. But you won’t. There is something wrong with you.
The voice turned out to be right: in the midst of the pandemic, my world imploded. I was diagnosed with eye-brain issues. I could not look at a screen. I withdrew from almost everyone dear to me. I was lost, and seemingly no one could help. I sensed the practitioners’ frustrations with my lack of progress, and felt it was my fault.
Now, five years later, I finally have my life back. I’m working, climbing rocks with my nephews and biking like the wind. How did I get here from there? And why did a mild concussion become a disaster?
The answer lies at the nexus of neurology and psychology, in the pioneering field of functional neurological disorders. FND is a misfiring of the nervous system and can be triggered by an injury. For those who suffer from it, abnormalities can be detected in the functioning of brain networks. It is often connected to trauma, including intergenerational trauma, and there is a correlation with chronic pain. Symptoms include an array of functional problems, including seizures and a loss of control of one’s limbs. For me, it was a perpetual loop of concussion symptoms. This obscured what would have been so freeing to know – that I had already healed from my injury.
The physical manifestation was most acute in my eyes. It was as if the terror of my Holocaust survivor grandparents took over the functionality of my ocular system, and any wrong eye movement would lead to the horrific rupture they experienced. I retreated into the fuzzy world without my glasses on. Looking both ways before crossing the street was out of reach. I almost got hit a couple of times, and briefly wondered if I cared.
Finding a therapist and neurologist who understood me changed everything. No longer was I a freak, an aberration. As neurologist Z Paige L’Erario wrote last year in Scientific American, those with FND may be predisposed to feel shame – and negative experiences with medical professionals can worsen functional symptoms. Seventy-five per cent of those diagnosed are women, and there is a history of FND symptoms being minimized, stigmatized or undiagnosed for far too long. Dr. L’Erario is working on a study of 2SLGBTQ+ (a community of which I am a part) and gender fluid folks with FND, and suggests that all marginalized peoples are at higher risk, while also more prone to falling through the cracks of our health care system. When you’re the person falling, it feels more like an abyss.
I gradually learned with my therapist that my body was not cursed, but sending me SOS signals. I had explored the trauma I carried for years prior and had made the link with physical symptoms before. But I hadn’t believed I could actually change it, because the voice seemed so powerful … and ancient.
In the 1930s my grandparents Leo and Anna were Polish Jews living in Vienna with Leo’s mother, Doba-Lea Sara, who I am named after. A sister, Salcha, was nearby. After Hitler came to power and the Germans occupied Austria, Leo was beat up repeatedly by the SS. After many desperate attempts, they finally procured the necessary exit documents in late 1938 and fled. But Doba-Lea and Salcha refused to join, and perished, after being sent separately to Treblinka and Maly Trostinets concentration camps. How can one blame one’s relatives for being murdered by Nazis? Well, I did. They made a mistake and it cost them their lives.
This terror of mistakes attached itself to my accident in the kitchen and all other “mistakes” that flowed from that – returning to work when I shouldn’t have, stepping down too hard from the curb, looking at a screen, until my world had shrunk to a bent figure sitting inert in a chair, my only solace the plaintive chirps of robins outside my window. Later my neurologist, Dr. Matthew Burke, told me that those with intergenerational trauma are epigenetically predisposed for functional disorders. He also explained that conventional concussion rehab can worsen FND symptoms because it focuses attention on them; the key is to move your attention away – to develop new neural pathways outside of the problem area that keeps lighting up.
With the therapist, I began EMDR (Eye Movement Desensitization Reprocessing), which utilized my imagination – and began to push me out of the endless symptom loop. I visualized myself running and hiking. I saw myself in a meadow, bare feet in the grass. A black bear comforted me and protected me. I was still trapped in my chair, but my mind began to explore.
She asked me for a memory when I felt strong, nurturing. I remembered a backpacking trip in the Pyrenees with two high-school friends. I was 18. One night, camping near a peak between France and Spain, the storm hit. It battered our tent and broke a pole. As thunder and lightning crashed around us, my friends were terrified, but I jumped into action. I held the tent up and sang to them, reassuring them the best I could. On that mountain, I felt no fear. I knew in my bones we would be okay. The therapist had me notice where I could feel that, now, in my body.
Singing also became a way to reroute neural pathways. As did movement. Eventually I was dancing in the aisle at Dollarama. My husband’s face began to lift. I went back to screens. I was commended for my progress and insight into my path forward. I had worked hard for it.
One of my high-school friends recently found a photo at the bottom of a pile which captured our adventure in the Pyrenees. In the years since it has been taken, the photo has been ripped down the middle – bearing the mark of time but also the fault-line in my psyche. While the image can only be fixed in Photoshop, the wonder of the brain is that I could repair myself. This is not magic, but neuroplasticity and the human capacity for healing.
In fact, I was never broken. I just needed to connect back to where I was whole. When my needs were acute, I never imagined they could be met – or that I would be the one to meet them, with others’ help. The child who thought it was her job to save her ancestors, and who blamed them for their choices, had struggled inside me for a long time. Since I reached myself in that untouchable spot, I now have more capacity for others. The world is in deep distress and needs me. It feels good to be figuring out how to respond to that call in various ways.
I still experience some symptoms, but they don’t stop me, and I now view my recovery as a gift. As proud as I am of the other mountains I’ve climbed in my life, healing my brain is by far my biggest achievement.