I cannot comprehend it’s my 24th anniversary. I cannot compute that I have lived longer as an adult with brain injury than I did without one. My new life with catastrophic brain injury began on this day almost a quarter century ago close to this time of day.
Fitting that I ended my 24-day Christmas break today and also two days ago finished reading a novel that a fellow bible study member had loaned me a decade ago about the effects of brain injury on an intelligent, driven, Type-A woman. Sarah Nickerson, the injured woman in Left Neglected, was the same age I was when the universe thrust me into an unwanted life. But unlike her, I didn’t have the fairy tale support and a new, exciting life within a year.
Yet I gained something that Sarah didn’t; for in all her research, Sarah’s author Lisa Genova seems to have never heard about neurostimulation and/or neuromodulation to restore broken neurons and neural networks.
You can read my story in Concussion Is Brain Injury: Treating the Neurons and Me.
I borrowed Left Neglected reluctantly. The lender brushed away my trouble reading, that I didn’t know when I’d get to it, and pushed it into my hands. So much reminded them of me and my travails; whenever I could read it was OK.
I moved it from bookshelf to table and back again every time I had rare energy to dust my bookshelves. It stared back passively, reminding me of what I couldn’t do anymore because one driver needed to tailgate down a highway hill and another felt speeding was the only option for her. Although I regained my reading comprehension in 2018 — after I’d fully and finally given up on finding any program, any treatment to restore it — I buried Left Neglected under a pile of books so that it would stop taunting me.
But on the fifth of January in this new year, two weeks after I suddenly decided to take a complete social media, computer, and writing break — a break from the horrible world — I fished it out, ready to read it. I think I was ready because I extended my break twice from my original intention of 10 days to 2 weeks to 24 days. I read, reorganized, thought, cleaned, dusted, polished wood furniture, set a new Goodreads reading challenge, and watched an awful lot of Netflix and TV. All that physical activity was an antidote to my usual cognitive efforts and let me enter 2024 differently than I’d exited 2023.
My bible study friend was right. Much resonated with me. Her age; the suddenness of the car crash that upended Sarah’s world; rehab’s insistence on acceptance and her rejection of it; believing return to work would happen within weeks; rehab’s blunt rejection of that fantasy; practice, practice, practice skills and never get back to 100%. Yet I steamed over how Sarah was given standard rehab with no neurostimulation or neuromodulation whatsoever. I reminded myself that the publication date was 2011, that Genova probably wrote it in 2010, three years before the clinicians at the ADD Centre evaluated the research on tDCS and trialled it on me.
Neurostimulation Accelerates Brain Injury Recovery and Enhances Rehab
Transcranial direct current stimulation (tDCS) is a battery-operated, targetted, microvolt stimulation of the brain. A diagnostic qEEG determines where to place the sponge that conducts the microvolt current into the brain, either stimulating or inhibiting electrical activity. During the 10 to 20 minutes of neurostimulation, the person with brain injury engages in the activity that they want to restore so that the brain “knows” which pathways the tDCS’s electrical activity should rewire. This is what we did at the ADD Centre with me: I chatted while the tDCS stimulated an approximately 6-cm area of the left side of my brain. Because I chatted, I regained my natural speaking ability and conversational skills to the astonishment of one young brain-injured man’s mother.
Audiovisual entrainment can also engage the damaged networks; Mind Alive has a reading SMR session, which entrains the relaxed, focused attention brainwave rhythm while the person reads in order to facilitate reading.
Brain biofeedback enhances and inhibits specific brainwave frequencies at locations determined by qEEG evaluation and the client’s priorities, in order to restore foundational cognitive skills such as concentration, working memory, perception, vision; emotional centres; motor skills.
Photobiomodulation or low-intensity light therapy and PoNS work systemically, including reducing pain and restoring balance.
Just Because You’re Intelligent Doesn’t Mean You’ll Question the Experts
Sarah received none of these. True, the only ones proven at the time for brain injury were brain biofeedback and audiovisual entrainment, yet she could have benefitted from both. Sarah may’ve been an intelligent, driven Harvard graduate with a high-powered job in the business world, but she used none of that to search for a cure for her left neglect. She accepted without question the rehab she was given as the only methods available to heal her brain.
I did not.
Even so, it’s been 24 years and I still have not fully recovered.
A doctor once told me I’m doing better than 90% of those with brain injury. I thought that’s bad because I don’t feel I’m doing well at all.
What Is Brain Injury Recovery? Just Neuron Restoration?
Recovery is more than regaining one’s intellect, concentration, memory, writing (albeit different than before), and reading. Sure, I write a blog for Psychology Today, but my health care team ensures I get it done, and I receive help with basic errands. Sure, I read novels almost daily now. Today I drew off my bookshelf Battle for God, a book I’d begun reading 24 years ago after my brain injury in 2000, whose foreign terms were suddenly incomprehensible to me, that proved to me I couldn’t read. I’d stuffed it on my bookshelf, the cover holding my place on pages 150 to 151, ready to read it when I regained my reading in 2001 I figured. I figured wrong. Today after opening it, I saw large pages of text, the cover holding my place from 24 years earlier, felt intimidated, and shut it again.
The pain of my reading loss is like a neverending flashback.
The flashbacks aren’t from the loss so much as the unwillingness of family members and friends to accept my reading loss as real and hunt for treatment to help me. Only one person immediately empathized and began thinking about possible treatments: Dr. Michael Thompson at the ADD Centre. Otherwise, I was left to look for help on my own, like I had to for my entire brain. The Clinical Director Dr. Lynda Thompson eventually found Lindamood-Bell, and my neurodoc goaded by the professional competition, helped me practice once I finished the visualizing and verbalizing reading comprehension program at Lindamood-Bell.
You Love a Person? Accept Them When They’re Catastrophically Injured Otherwise Did You Love Them?
Unlike me, Sarah had family and friends who accepted her deficiencies as real. They plunged into therapy with her. They saw her as still having expertise and ideas worth following. They didn’t pat her on the head with “that’s a good idea” while dismissing it in practice. Nor did they deny her existence, elevate their limited knowledge over her experience, and diminish her knowledge and intelligence as valueless.
Recovery cannot be complete until love accepts the full catastrophe, participates in therapy and treatments, seeks better ways to restore like Sarah’s mom and husband did for her, makes an effort to accommodate and remain in the injured person’s daily life, and accepts the new person as valuable and their ideas as valued as they had been before the car crash. Night falls on my 24th anniversary of living with brain injury and such a complete recovery seems impossible from this vantage point. And so I shall return to getting Brain Injury, Trauma, and Grief into accessible ebook format, update my brain injury website, and continue my retrofitting journey as I begin each day with a novel and a cup of coffee.
