The doctor’s office is utilitarian: chair, desk, plain walls, papers strewn across faux wood. The diagnosing physician relates in neutral tones that your brain has been knocked about and is now damaged. You leave. And then over the months, more and more brain injury reveals itself. Concussion is such an old word that connotes “no big deal.” Brain injury is a term that feels abstract to most, something that happens to others but isn’t real or manifests in talking slowly, walking with a dragging foot, sitting mute and drooling. Long Covid’s neurological symptoms are a recent addition to brain injury causes, and like with concussion, seem to be a puzzle untied to brain injury. To the person with it, each new revelation brings a tiny bit more discernment about what this diagnosis means.
Babies die from being shaken; adults aren’t unaffected. Viruses damage silently. Bleeds spread their destruction. Trauma wounds.
Life is destroyed.
No one explains brain injury to the person with it in ways they can understand because their instrument of understanding — the brain — can no longer pay attention, take in language at normal speed, process information efficiently, add to existing knowledge, and remember for longer than a few minutes. The instrument of understanding also tends to get stuck on an idea, an event, a word, a tone, an encounter, like an old-fashioned needle in a dirty vinyl record. “Rumination,” specialists call it. Busy brain is the type of brainwave pattern that creates it. Only someone willing to use simple words and pictures, willing to speak slowly and in even tones, willing to repeat themselves for days, weeks, months, years, willing to answer the same questions as if the injured person had never asked them before, can help them gradually and painfully figure out what brain injury from concussion, a virus, a bleed, surgery, tumour, etc. really means.
Yet specialists expect the injured person to grasp the enormity of the injury, to skip over grief to gratitude, perceive the long-term ramifications, and decide on the best treatments immediately else the eyes of compassion turn to slits of animosity, accusations of malingering, not accepting what’s happened.
Humans understand by talking. Human beings with brain injury land over and over on the same point because we cannot process language and concepts with automaticity anymore; because we get lost on the way to understanding; because rumination hiccups our progress. Yet while still lost in understanding, and even when embarking on recovery, the first words we hear from so-called loved ones, words some specialists seem to think are valid, are: “You talk too much about your brain injury. Stop talking about your brain injury. Brain injury this. Brain injury that. Talk about something else. No one wants to hear you talk about your brain injury. You have no friends because all you talk about is brain injury. No one wants to be with you when you do that all the time. You need to get on with your life. You can’t do that when you’re obsessed with brain injury.”
When one has a brain injury.
Another impediment to understanding are specialists who hear typical symptoms of brain injury and respond with head scratching, for they have not read up on brain injury or continue to perceive it as it was understood decades ago. Or brain injury specialists who diagnose or treat with standard medical care respond to their patients who explain over and over their difficulties, that these difficulties aren’t due to brain injury and disbelieve that they didn’t have them prior to the injury. Or they diminish the difficulties to the level of nuisance instead of understanding they’re life-impeding. Specialist or loved one, failure to read up on brain injury, to learn from specialists using neurostimulation therapies is akin to abandoning the person with brain injury, to proclaiming they don’t want to understand what their patient, client, or loved one is going through.
Are judgement or dismissal or a refusal to read up — even watch webinars — and understand appropriate responses to a person stuck with a diagnosis few fully understand, enduring losses that no one could ever imagine are possible, striving and failing to regain normal life with a brain that no longer knows how to execute skills automatically such as walking, talking, cooking yet without the medical system actively treating stretched axons and shredded blood supply?
Would someone say to a person diagnosed with cancer, pale from their disease, fatigued from their treatments: “You talk too much about your cancer treatments. Go for a long walk and get on with your life. You spend too much time on health care. You’d be better off if you focused on something else.”?
Is judgement or refusal to learn, to research what brain injury is and how to treat it effectively, a way to heal a person? Does criticizing relentlessly and bleating to the person with a brain injury about how hard it is to be with them, help them recover? When did we as a society come to believe that criticism, judgement, and refusal to learn are effective in treating an injury and supporting a person through the tough times of recovering?