By Diana Lund in Illinois
Brain injury often goes undiagnosed – it’s just an accident!
I had a granduncle who, according to the family lore, was accident-prone. When he hammered, he missed the nail, struck his thumb and dented the wall. When he swung an ax, the tree fell his way. Relatives recounted that he broke every bone in his body and some bones more than once. He’s had several accidents on the job at the quarry, several home accidents and several car accidents – including a car accident on the first day he got his license back after several years of not driving. Good-hearted Alfred was hoodwinked by gypsies; they stole his wallet and later he let them into his home and they stole the contents of that too. The extended family thinks of him as having been normal – he played a savvy game of pinochle – with a string of bad luck. Now, I think that there must be some tie to brain injury; all those falls and mishaps are characteristic of a person with brain injury.
People think I’m normal but I have a brain injury
People call me normal too. My face and body are symmetrical and I’m mainly coordinated again. In conversation, I give relevant responses enunciated clearly. Only I can tell my wit is missing and my vocabulary shortened. Inside I scramble to keep up, to sound normal, to appeal natural. During the silence of night, I long to shed my deep-seated, lost feeling.
It won’t leave. All experience provokes it.
At a bike club’s invitational, I am handing out t-shirts at the registration table when a slim man, approximately my age – fortyish, approaches. His words startle me. “There you are. I’ve been looking all over for you.”
The rider obviously knows me, but I have no recollection of him. Not unusual, I play along. Possibly something he says or does will generate a flicker of familiarity in my brain. “Well, you found me,” I respond.
He continues, “I wanted to make sure you saw me so that I get credit for participating.”
Evidently, I’d pressured him into supporting our charity event. I want to show gracious acceptance of his financial gift. “Consider yourself with credit,” whoever you are.
“Have a good ride.”
Pleased with my acknowledgment, he departs. He has no idea I don’t know who he is. The next time I see him and don’t remember him, I’ll pretend again. And by god, I hope that I give him his credit.
Hiding my confusion after TBI
My confusion doesn’t always slip smoothly past others. At the end of a work day, in the block-long and block-wide company parking lot, the search for my car begins. Wandering down aisle after aisle, I run into a coworker who asks, “Can’t find your car?”
“Yeah, I’ve forgotten where I parked it.” Again.
Empathizing with me, she replies, “Oh, I’ve been scatter-brained like that before.
That’s normal. Good luck on finding it soon.”
Explaining my behavior after brain injury
People want to idenfity with their chums and naturally, try to explain others’ behavior by self comparison. If they have acted this way once before, then my behavior is normal.
They miss the totality of my existence; I make a string of mistakes—one after another after another. They are not seeing behavioral exceptions, but the rule.
Not only that, but the tips of our icebergs are all that we have in common. Upon finding her car, the placement jogs memories of having parked there. My experience is more like a valet had parked my auto; I can’t access parking-the-car memories. Having no internal record of the recent past feels frightening and hollow, like watery remembrances swirling down a tub with a leaky plug, abandoning me naked and cold.
Is a life lived if it is not recorded? Did “I” really exist?
Repeatedly telling me, “I understand,” minimized and invalidated my experience, no matter how well intended, no matter how much I wished it true. Out of frustration, I sometimes blurted out to the caring person, “But, I’m not normal.”
Typically, I heard back, “It can’t be that bad. I forget things, too.”
Unable to explain myself in enough detail on such short notice disconnected us further.
Mild brain injury is not so “mild”
Particularly after the first year of mild traumatic brain injury from a car accident, I had silent and invisible disablements, indiscernible to my daily contacts. If my acts weren’t flagrant, they’d lump me into slightly-off-my-game normal. Too many of the same errors and the tone would change to, “Okay, stop doing this. Stop being different,” with possibly some sardonic ribbing. Even people who knew I had a brain injury tended to discount the diagnosis in favor of my having control over my brain’s functionality.
Why should someone who looked normal not be held to the same standards as everyone else? I began to feel that it would have been better if I had a visible defect, like a black-and-blue shaved scalp.
Like my girlfriend Jill’s nasty head gash from a car collision. The doctors stapled her flesh back together. People became sympathetic and compassionate when they saw the dried blood, the jagged cut and the metal holding her brain in. I watched her for signs of a more profound injury, brain injury, which, fortunately, I could not find.
Unlike her, I looked unscathed after my closed head injury. The broken part of me was encased behind a smiling, pretty face, and mostly, my internal discontinuity appeared singularly as within-most-social-limits. No extra care needed here.
That’s just nonsense. When the brain, the master controller of operations, goes down, it can take years of intricate and delicate work to get that system running again. The healing process takes longer than the injured person’s acquaintances care to remain attentive. People prefer to think that you are fully recovered. They fill in erroneous reasons for unusual behavior. I didn’t return their phone calls because I chose to ignore them, not because I’d lost the inner nagging voice to remind me to call. I didn’t answer their email because they were unimportant to me, not because I hadn’t formulated an answer yet. Word spread around the office about my poor attitude and bad work ethic. My brain’s damage unrecognized, the gossip exacerbated my problems.
Normal is not the answer
After enough “You’re Normal’s”, I cringed at the glossing-over, uninvolved response. “You’re normal,” a superficial slap in the face, “You’re normal. You’re normal,” a platter of platitudes, stung deeply. Each day I strained toward attaining the far away goal of normal I supposedly already had. Suggesting ways to remember where I parked my car, reminding me about an unanswered phone call, or trying to calm me down when I over-reacted, would have eased my load until I could learn to compensate for my faults. Increasingly isolated, I came to resent “normal” people living blindly to my abnormal life. Another normal-looking brain injured woman I’d met tried to commit suicide because she couldn’t overcome problems that friends and family didn’t view as sizeable.
Nothing irked me more, no single misunderstanding damaged my social life more, than the misnomer of normal. Whoever would have guessed during my young, smart life that, someday, I would aspire to be normal, and afterward, daily, people would assure me that I was.
Work to include others authentically. Diversity enriches our lives.