Memories of early life with brain injury conjure the feelings of unwanted, orphan children making the best of their childhood; swinging awkwardly, unwatched, unguided, yet nonetheless playing on a rusted swing set among the overgrowth of a condemned playground. But time is money, and we all know that cash is king! The memories of old become polished, understandable, and okay as we move through the stages of recovery. I will share one quick memory that made me smile today. At the time, no appreciation or lifting of my anguish occurred. Now, with the payments afforded through months and months or growth and reflection, I know this thirty seconds of memory reaffirmed whatever it is that makes people everything they can be along the spectrum – from cruel, psychopathic, and all the way through the gradient to the act I experienced that seems almost saintly.
Perhaps four-six months post moderate TBI, I was on my own, as usual, tasked with at least making it on my own to routine appointments. I even had a notebook with a decision tree. What decision came next was in writing for my review. I took the Bay Area Rapid Transit BART train system from Richmond, CA, to downtown San Francisco for my twice weekly psychotherapy appointments with my longtime psychiatrist. Being out of work and living in the SF Bay Area on SSDI made money a constant threat to my wellbeing. One impulsive decision and I could not afford groceries – you know the story. Back to the story at hand, I left for my trip into San Francisco and deposited my last 20 dollars, saw it had loaded on my train ticket, and knew it would get me there and back without a hiccup. Except with brain injury there is always a hiccup. Mine came on my return ride home. BART charges the fare according to the length of your trip, and if you do not have adequate funds on your ticket, an agent will prevent you from leaving the station until the issue is resolved. I passed my ticket through the gate and the red alert of “insufficient funds” flashed. Twice. Then a third time as I moved down the gates, assuming the card reader was the problem. When a shoulder of mine was pulled with the force enough to turn my body 180 degrees, I looked into the eyes of a weary station agent at the Richmond, CA BART station; Richmond, and I assume it’s BART station, have seen and heard it all. So, seemed, from the look of this agent that no “story” or promise I had paid earlier when departing would be met with unquestioned trust. I plead my case; I was certain my 20 dollars had been added, and confirmed to be loaded on my ticket that very morning. I do not ride BART alone often, and this is my habit – the machine must be stealing my money. “You have one dollar and forty cents. I need you to load the balance onto your fare before you can leave the station.” My emotional lability teetered between shock, anger, fear, and finally settling on the threat that I was being taken advantage of – again. That was my twenty dollars, please fix this ticket. I have never been more certain before. Please, I grunted, people try to take advantage of others all the time, and I am not having it. “Yes, but I am running your ticket’s history and you never loaded anything on it this morning. It was last used weeks ago, and the balance is just over a dollar. You did not put twenty dollars on this ticket.” My body language and speech must have begun to deteriorate noticeably, as they do when I am cognitively taxed. I knew I was right, and said so again. After the same explanation, I again stated my memory was correct; that twenty dollars had been taken from me. “Do you have any problems?” The agent asked, stepping back and relaxing his tone. “I have a brain injury. Why?” I said loudly and defensively. The agent sighed, knowing this was going to be a difficult time to have to involve the BART police. I wasn’t asking for money, I was asking for my money back. No measurable amount of seconds passed before a lean, late-thirties aged man simply stuck twenty dollars in my hand and walked through the gate without a word. Even more, he did this without even a look back towards us; his action was automatic, thoughtless, part of his being and not a calculation between altruism and a chance to preen his pride. I couldn’t appreciate what a kind gesture this was at the time. I felt my stolen money had been returned by a passenger who decided to end the public bickering at the gates I was blocking. Or perhaps he had the money to give, and not the time to spare intervening and simply paying my six or seven dollars fare.
Today I thought about how this was the first time I was asked if I had a brain “problem” by a stranger. I thought my deficits, if they even amounted to much, were not perceptible. They were clear as the day, but concealed most of all to myself. Second, this stranger who passed through without a break in his stride, understanding I felt owed twenty dollars, not simply the fare, knew without more than seeing and hearing the way I carried myself, interacted, repeated questions and answers, and bore a look of confusion that I poorly powdered with a layer of independence and pride. He knew what a human being is; it is a life exposed to the elements of hate, joy, ecstasy, awe, inspiration, loneliness, wonder, indifference, humor, anger, compassion, and pain of the greatest heights. I wish him the greatest of heights in his journey walking this earth.
Source: Explaining Your Brain Injury May Make You Feel Speechless, Yet the Lack of Language to Truly Impart the Experience of Living With Brain Injury is the Root to This Thorn. Until Public Discourse Deepens Definitions, Words Remain Reinforced Windows to Shame and Shut Our Mouths’ Speechless. But We are Not Speechless, We Are Wordless.
We are Not Speechless, We Are Wordless.
Each brain injury shares a common nucleus of similar injury symptoms. Some say the stages of healing and psychologically coming to terms with grief and change are so alike that rehabilitation professionals tend to match up these “newly injured,” or “high functioning adults.” Stop and remind yourself this:
“If you’ve seen one brain injury, then you’ve seen one brain injury.”
This truth is evidence that each of our stories must be told, heard, and felt – whether publicly or privately, and through any medium that you, your loved ones, caregivers, and any other soul touched by this topic choose to utilize so that our honest expressions can be actually understood and heard by the often indifferent majority of people. I will share some of my memories, reflections, some resources, repost others’ blogs, and do my best to tell no lie – even if it is only a lie because I could not find the right words to make it deeply honest. As Bruce Lee said, “It is easy for me to put on a show and be cocky…to show you some really fancy movement. But, to express myself honestly. To express yourself honestly, not lying to yourself. Now that, my friends, is very hard to do.”
Common to every brain injured patient, and often any caregivers, is the misunderstanding and fear surrounding traumatic brain injuries and concussions. Injured persons are desperate to feel understood, believed in, and treated as if they were the same old person inside. Yet even after the behavioral, emotional, cognitive, and physical changes present soon after the brain injury, people do not expect that what happens next will be so unexpected. People like a clear, linear path of recovery to a place the brain was, and will never will be again. Further, initial brain injuries can seem to be difficult for the patient in certain ways those around them come to recognize. Yet after initial injury, the brain sets in motion a cascade of neurophysiological responses to scramble metabolism, inflammation, blood and oxygen rates, and hormonal system alterations. Some patients do not go through much, but many change dramatically, seem to be progressing in ways that later decline, and new organic and trauma related emotional and erratic behavioral changes now accompany the injuries own organic, neuropsychological stages of brain in its survival mode, reprogramming and adapting as best as it can to mimic the previous levels of function a patient may have included as a character trait, or a skill known proudly by others.
Education, experiences with medical providers, insurance, disability, psychosocial effects, and the expansive secondary impact upon caregivers, friends, occupational engagements, and more hold devastating consequence to survivors and their communities, too, for each person lost in our system is lost to us in our society.
It is a scientific puzzle, the brain, and the answer is simply that we do not know enough about what occurs when the brain is injured. To make this worse, each brain is different, each is injured differently, and each responds to the post-injury event differently. Plus, we all have lives that vary in socioeconomic group, geographic location, individual health status, and we vary as to the responsibilities and expectations within even community wide social commonalities. Yet, to make diagnosis neatly wrapped in separate packaging, medical trends consider similar categories of brain injury together, while even the severity of the injury is usually given a point system rating scale. Strokes, closed head injuries, open head injuries, Mild Traumatic Brain Injury, Moderate TBI, Severe TBI, diffuse axonal injuries, focal injuries, concussion, post concussion syndrome, mild neurocognitive disorder…these may appear categorically similar, but directing similarly looking injuries may not always guide appropriate treatment decisions. Should I suffer from a gun shot wound to the chest, legs, and stomach, will any hospital funnel you into a “catastrophic bodily injury” treatment center? Of course not! The patient with breast cancer, the student athlete with a torn ACL, the man with pancreatitis, and me and my bullet riddled torso in no way are eased by the efficiency of segregating patients in this way. The brain is everything else. It is too foreign to the brightest of us, and brain injury, the recovery, and the experience living after any type of brain injury is not generally “alike” enough to pursue efficiency through head versus body injury. Then there is one other problem. Even we who suffer a type of brain injury ourselves find it is not easy to explain or describe to others; it almost seems to be a topic deemed unspeakable to everyone around us who will just never empathically feel our innermost turmoil and sensations of the body, mood, and mind. How can we fix this?
Explaining to someone naive to the experiences survivors of brain injury have encountered is difficult; the social editor inside ourselves leaves us to often hold back from revealing honestly and thoroughly the truly raw and deeply held emotional and experiential intensities. Recovering and adjusting to life after brain injury is far too isolating enough as it is without feeling speechless when describing our innermost feelings and experiences. We are not so speechless to describe the experience of brain injury so much as we are wordless – it cannot ever be truly impressed in full spectrum in any typical fashion. For this reason, we must choose to speak from the honest feelings within us as if no audience is present to interpret and misunderstand; by any medium necessary we must transmit both the facts and the feelings related to traumas; we must engage in self-observation, speak through our somatic awareness, our body’s stress and tensions. By first willingly perceiving our own visceral sensations, we begin to develop the ways to describe our innermost recesses and trauma. Whether privately or publicly, by medium of speech, poem, story, art or other expression, we find honesty, break the walls of isolation, and come to regard ourselves and others with compassion. Gradually, as we rehabilitate and adapt to the changes of brain injury origin, working hard to repair the brain will naturally accompany the cultivation of our heart and the happiness, kindness, and joy of living that escapes too many of us after brain injury.
Survivors of any form of acquired and traumatic brain injury, their caregivers, their loved ones, and others affected or touched by the topic should post stories, share art, share jokes, use any coping skill or strategy to get the truth out. This will help remind us that we thought we lost our minds, but the impacts of the injury meant our minds also found a place to hide. It’s not time to hide now. It is time to just be.