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.

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16 Responses
  1. What a wonderful story. Not sure if I have anything of value to offer other than it is making me think very deeply about my own situation. The dilemma to go with your own ‘gut feeling’ or continue the search for a credible medical or psychological explanation isn’t an easy decision to make.

  2. Michael

    Well said. 25 years ago after her second bout of cancer my wife was told she had 2 to 6 months to live. She is still with us today. Thanks so much for your inspiring stories.

  3. Michael

    Well said. 25 years ago after her second bout of cancer my wife was told she had 2 to 6 months to live. She is still with us today. Thanks so much for your inspiring stories.

  4. srmarykathleen

    My parents were told when I was born that I would never learn to talk or walk. My grandmother who was an RN refused to believe such a bleak diagnosis. She worked with me day and night when I was an infant and toddler. After going to a special ed school for one year, it was determined that my intellect was fine, my fine motor skills were more than good, and my gross motor skills were overall fine although I always felt delayed in this part of me.

    The only thing that I really suffered from was a very strong lack of self-confidence as a child and this transferred to my many years as an adult too. I was slow at learning things which required balance and speed. As a child this felt devastating. I always knew something was “different” about me. I never knew my story as an infant until the night before my golden birthday— I was turning 20 and going to college to major in Elmentary and Special Education. My Dad shared the story with me. I was my parents’ miracle child and they were thrilled that I had chosen a profession to help children with special needs.

    I have also suffered from anxiety and depression for most of my adult life. This battle is the hardest of all. When I read your writings, Theresa, I feel like you are putting into words the challenge of dealing with depression and anxiety. There is such a bad stigma about mental illness —for me at least. Your writings fill me with hope and gratitude that I can heal and that I will heal each day more and more through the help of God’s grace and sincere consistent hard work. Thank you for putting into words what is so very hard to express and accept. God bless you.
    Sincerely in Christ,
    SMK

  5. Cynthia

    Terrific &, as usual, so empowering! Thank you, once again, Therese~ your words offer generous, genuine, support & hope to many of us, yet speaks to each of us personally.

  6. Cynthia

    Terrific &, as usual, so empowering! Thank you, once again, Therese~ your words offer generous, genuine, support & hope to many of us, yet speaks to each of us personally.

  7. Pat Schwimer

    Dear Theresa, thank you so much for sharing this. The message applied on so many levels physical as well as interpersonal. I am trying to work through a family problem trying to support my son and grandchildren in a situation confounded by a serious mental health problem. I have been shut out by the troubled one, but not my son.
    I have a wonderful friend who is my source of strength reminding me that I have the “smarts and guts” to work this out, at least in the small way one can with adult children.

  8. Kate

    Thanks Therese. We all have the little red dot that could define us if we let it. The older I get the more I can say I’ll work around the dot and just keep going. So happy that you’re pursuing your desire to be a chaplain. I’m 55 and am finishing up an MS in Clinical mental health, my real calling. Hard to start again in your 50’s but boy do you appreciate every step of the journey. Sending you God’s peace and blessings. Thank you Therese.

  9. Kate

    Thanks Therese. We all have the little red dot that could define us if we let it. The older I get the more I can say I’ll work around the dot and just keep going. So happy that you’re pursuing your desire to be a chaplain. I’m 55 and am finishing up an MS in Clinical mental health, my real calling. Hard to start again in your 50’s but boy do you appreciate every step of the journey. Sending you God’s peace and blessings. Thank you Therese.

  10. Dale Heins

    Hi Therese, That was a great article!! Thank you for writing it and putting truth into our doubts. My step daughter 14 years ago was pregnant, at her 24th week I took her to a hospital because she was having severe pain in her stomach. The doctors took a look at her and said they couldn’t help her at that hospital. They had an ambulance take her to a hospital that could maybe help. She was put into a induced coma and her mother and I were asked if we wanted to try and save the baby. Of course we do we said, My step daughter had gotten a very bad virus and they could not treat her and keep the baby. They did an emergency operation to take the baby she weighed 1 lbs and 6 oz, the baby was a little girl who stayed in the ICU for three months. During that time the doctors said the baby’s mom might not make it. Mom was in the ICU at a different hospital and remained in the induced coma in order to treat her. We were told our granddaughter might have some developmental delay in her mental capacities and my stepdaughter will have lasting affects due to the infection if she makes it. My stepdaughter now is healthy with another child as well. My 14 year old granddaughter has an above normal intellect and physically very normal except for a little scar where her feeding tube was attached and the mean girls tease her for having 2 belly buttons. That was one of the hardest 3 months in my life not knowing what this outcome would be.

  11. Susan Suchy

    Thank you Therese. I am so happy to again read your supportive empowering words. Yes I was worried when you took some time off but now I understand why. So glad we can share our journeys of hope.

  12. Mary Lynn Hendrickson

    Beautiful as always, Therese. You always weave wisdom from worries and wounds–and it’s profoundly helpful. Magnificent even. You go, girl. You go.

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