Comparing Early Brain Injury Recovery Stages to the Pandemic

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“I got this,” I thought when facing recovery from brain injury. In Concussion Is Brain Injury: Treating the Neurons and Me, I called this first stage the Honeymoon. Acute illness, the kind we’re all familiar with, tends to have a four-stage, upward progression: Get ill. Get diagnosed. Be given treatment. Be fully healed. Perhaps that’s why a concussion or a novel viral disease like COVID-19 devastates us when we learn it has a horribly different progression.

Honeymoon

My honeymoon stage lasted two years. I received my diagnosis and heard the neurorehab message that all would be well, with some adjustments, as long as I followed the evidence-based recommendations. I believed in the North American ideal of work-hard-and-rewards-follow, meaning full recovery of my social and working life.

Similarly, the pandemic began with governments united and neighbors rallying around the vulnerable. We believed evidence-based public health measures might last a few weeks or months, evidence-based vaccines were coming, and we'd return to our social and working lives.

Then the reality of “novel” hit.

Abandonment

Brain injury, like a novel virus, is so unknown and incomprehensible that grasping it is like snatching at mist. I assumed experts grasped brain injury, but as I lived longer with mine, and compared brain injury care to the care of anything else, I realized with horror that following their advice wouldn't return me to my life. Strategies and rest may be called “evidence-based” but compared to what and based on what? As my peer mentor advised from their actual lived-experience evidence, strategies used optimally work at best 50 percent of the time. I felt betrayed by the experts who’d assured me that strategies and rest would restore me. Then I learnt about neurostimulation therapies, which traditional medicine experts eschewed under the rubric of not being “evidence-based.” This further betrayal led to feeling abandoned.

Like others, my reaction morphed from “I got this” to “I want nothing more to do with this.” I wanted to leave brain injury, like family and friends had left me to live normal lives, but the darn thing follows like a leech on the brain. Trying to ignore it leads to bad things happening.

That’s what we’re seeing in this stage of the pandemic. Like I had, people feel betrayed, even though, unlike strategies and rest for brain injury, public health measures of quarantine and wearing masks have evidence to prove they work. A virus is more simple than a brain injury in that when you cut transmission, you cut illness. But which public health measures work best depends on knowing how the virus transmits and accepting research conducted in other jurisdictions as being as valid as North American research; and learning to treat it includes looking to innovative work in neuroplasticity that could alleviate surgical backlogs, diagnose, and possibly treat Long Covid, as well as considering some research being done into using neurostimulation to treat COVID-19.

“We believe that the experience gained confirms the correctness and equity of including low-level laser therapy in the Russian clinical guidelines. There is also full confidence that the method can be used for the effective prevention and treatment of COVID-19 patients.”¹ (Moskvin, 2021)

Some people began to react as I had to my brain injury: They tried to leave the pandemic. Unfortunately, SARS-CoV-2, like my brain injury, follows the unprotected like a leech. Bad things happen.

Salvation

Finding innovative neurostimulation outside of “evidence-based” care for my brain injury saved me. Being heard, validated, and told the honest truth about the unknown of brain injury and using neurostimulation to treat concussion, though well documented for ADHD and epilepsy, soothed my extreme distress from betrayal and abandonment.

“Not being listened to is ‘a major source of patient dissatisfaction’….In the words of George Bernard Shaw, ‘The single biggest problem in communication is the illusion that it has taken place.’”² (Berman, 2016)

That illusion describes today: You feel stable when a health care professional hears what you expect and is truthful that you’re a participant in novel research, that your experience will help those who follow you.

Unfortunately, this lesson isn’t being applied to the pandemic. If we’d reached the Salvation stage in the pandemic, then people would not still be protesting, demanding an end to vaccine mandates, assaulting others for wearing masks, and rejecting public health measures. We keep hearing the phrase “evidence-based.” Evidence for vaccines is about the principle of protection. But our collective participation in novel research into specific COVID-19 vaccines has not yet answered the questions of which vaccine, how often, and in what form will provide the best protection from both disease and transmission even though, as the World Health Organization said, “some of the steps in the research and development process have been happening in parallel” to speed up the process.

We rebel when we’re unheard and we recognize when experts exaggerate research into authoritative evidence. We know traditional vaccine research requires years to determine long-term effectiveness, dosages, forms, and safety. Yet barely two years in, we’re being told currently available vaccines alone will give us what we deserve: life without public health measures. Just as with my brain injury, telling people what they want to hear instead of the blunt truth perpetuates suffering and grows people's expectation that current COVID-19 vaccines stop transmission.

We need leaders honest enough to eschew “evidence-based” language and admit we are in the middle of a collective research study into SARS-CoV-2, COVID-19, and Long Covid; into how to guard against the train of variants with their differing transmission rates, infection methods, and intensity of disease; the role of neurostimulation in treating disease and alleviating surgical backlogs; and how best to protect ourselves.

Like those of us with brain injury who pine for normal life, everyone pines for our pre-pandemic innocence when a novel virus existed only in horror movies. Time for brutal honesty: The past normal isn’t coming back. We’ve moved into a new pandemic era that needs a different way of living. Our leaders need to present that future as so much brighter that we’ll feel stable again and step into hope.

Copyright ©2021 Shireen Anne Jeejeebhoy