Three years ago I began to have problems with my concentration and memory. A veritable Goldilocks, I went from one physician to another seeking the solution. Each had a different explanation, of course, some more alarming than others. A few said I didn’t have a condition at all — that my symptoms simply aligned with an emotional story I was telling myself.
Two years into my quest for an answer I visited an integrative doctor specializing in Lyme’s Disease because I was told he was the area’s foremost authority on neuroinflammation, which I suspected I had. Two weeks after plastering twenty wires on my scalp (a quantitative electroencephalogram), he pulled up an image on his screen of my brain with a massive red spot in the middle.
Then he threw out four words that scared the hell out of me: pre-dementia and traumatic brain injury.
It turns out I did have Babesia, a tick-born illness like Lyme’s, which may have contributed to my cognitive sluggishness. He could have also been right about a medical procedure in my past causing some brain trauma. But I certainly didn’t have dementia. I know this now because I just finished binge watching the mini-series “Ted Lasso” with my twin sister and I picked up many of his hysterical one-liners that went over her head.
Giving Away My Power
In the months after I witnessed the red spot, I lived in panic. Every time I couldn’t follow a story or couldn’t place a snapshot from the past, my shoulders and neck tensed up and my breathing quickened. This is it. This is the beginning of the end, I thought. That anxiety was further compounded by the input from the other experts who suggested my complaints were not grounded in reliable data. You could remember her name if you wanted. You’re a drama queen blaming your cognitive laziness on dementia.
In addition to seeking help for my brain fog, I was also working with a physical therapist to heal some hip pain.
During one session she was telling me a story about the importance of a doctor’s bedside manners – the careful phrasing required to introduce a possible condition. I couldn’t help but tell her about the red spot because the phrase that preceded my diagnosis – “I’m not going to sugarcoat this” – made my hair stand on end. Halfway into the saga my lower lip started to quiver and I teared up.
She stopped her exercises and looked at me straight in the eye.
“An image doesn’t tell the whole story.”
“It just doesn’t.”
“Whatever is going on with your brain, I know it has the capacity to heal. I’ve seen this over and over again.”
A Dancer, a Runner, and a Horse Farm
Then she told me the story of Tiler Peck, the New York City Ballet star who was diagnosed with a severe herniated disc in her neck. The ballerina visited several doctors who suggested disc replacement or fusion. One even said if she didn’t have surgery she was taking a risk of becoming paralyzed. Finally she met with a specialist who told her that he thought she had a good chance of healing on her own if she took several months off and moved her head as little as possible. Her next scan showed progress and before long she was back on the stage dancing again.
Tiler Peck’s healing journey reminded me of the story of athlete Kathy Miller I read as a young girl, later made into a documentary starring Helen Hunt. At age 13, Kathy was disabled by an automobile accident. She persevered through intensive physical therapy, which involved its share of setbacks and friction with naysayers, to make a full recovery. Her story ends with her running a 10K race.
No doubt both Tiler and Kathy were shown some red spots of their own, suggesting they hang up their dreams. It’s possible some physicians questioned their symptoms – telling them science did not support their narratives. However, they didn’t let the image or an expert’s assessment predict their future or direct their health. They chose to believe in something bigger than an ultrasound or MRI.
During that confusing time when I was tempted to give a gaggle of doctors more power than they deserved, I drew strength from testimonies of people who stood by their own truths and beat the odds. Fortunately I was surrounded by them at the horse farm where I volunteer, a healing mecca that offers therapeutic riding to people with physical, cognitive, and emotional challenges.
“I was told my son would never walk,” one parent said to me before a lesson. I looked up to find the kid dismounting from his horse and running toward his mom.
“They said my daughter would never go to college,” another chimed in.
These families defied expert opinions by never giving up. Week after week the kids came, sat on a horse, and did the hard work in between.
A Wiser Goldilocks
Each of the physicians I saw during that period contributed an important piece to the puzzle. But none of them were able to assemble it all together. That was my job alone, with the help of my husband, the person who knows me best. Like the rest of the human race, doctors are driven by their own agendas and deeply ingrained belief systems – conscious or unconscious. For some it is simply too painful to acknowledge that the very treatments they use to help their patients can sometimes cause more harm than good.
Like Tiler and Kathy, I needed to set aside my first love – writing – for a significant stretch of time to let my brain heal. That was the hardest part — not knowing if I would ever compose thoughtful prose again. I was forced to define myself in other ways and build a new world for myself that did not revolve around words in case I could no longer string them together again in a coherent and clever way.
It was a lonely journey, marked with plenty of self-doubt. In the end, I did make sense of my story, which involved overcoming real cognitive challenges. With my husband’s input, I tapped into the resources I believed would be the most healing for me. Gradually I began to write again and read again and remember friends’ names. The answer was not found in a doctor’s office. This Goldilocks discovered it was all inside her.
Most of us are so ready to define ourselves by other people’s opinions, data, or medical reports. But even if the image suggests a diagnosis, it still says nothing about our possibility to recover and heal, about epigenetics – “our ability to write within the margins of our DNA,” as physician Pamela Peeke describes the term.
It says nothing about who we are or our potential.
That’s entirely up to us.