Normalcy after Brain Injury

What’s Normal?

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.


Lash Blog Permission

8 responses to “Normalcy after Brain Injury”

  1. Justin says:

    Hey all, thank you for your posts. I had a TBI in April of 2013. I lost my sense of smell and taste but it’s the scar that is depressing more so than anything. My smell and taste has since returned for the most part so I’m not complaining at all. I just wanted to know if anyone has had a TBI and not experienced any long term side effects? I feel perfectly fine, the same that I did before my car accident. I don’t get light headed anymore, I don’t have vertigo anymore, I don’t have a loss for words, or any loss of physical function. I can still type very fast and accurately, I play video games without and trouble, I can still exercise and lift weights like I did, I don’t get headaches like i used to and I’m not anymore forgetful than I was before. It just seems as if every single post I read online is always people who have mild to very bad side effects and I’m beginning to wonder if I am extremely lucky or if there are underlying issues that I just haven’t noticed. I consider myself lucky as my surgeon said I shouldn’t be alive, let alone walking and talking. I should be vegetative at the least. The only problem I am having is finding work. It seems like people are afraid of hiring me based on this but the government finds me to be not disabled lol. What’s a boy supposed to do? I have a college education and by the standards of today, I’m incompetent to work. However, the government says there isn’t anything wrong with you, lazy ass, get back to work. If anyone reads this, please post a reply and let me know if you or anyone you know has experienced a TBI without any lasting effects. Oh, one last thing for you all that I found to be extremely helpful for me. My senses progress was very minimal if at all. I got back up on my horse and ran on the treadmill doing HIIT. After a couple weeks of HIIT, I began to smell and taste a lot better. I would say my senses probably 85-90% normal now. I’m not asking you to get on a treadmill and do anything to harm yourself but I found that the heavy, deep breathing through the nose has helped me tremendously. I hope it works for many of you because having no smell or taste is miserable.

  2. Elin says:

    I acquired a mild brain injury 25 years ago during surgery. I was dead for nearly 4 minutes. I never felt the same since that incident. I have discovered not being able to do some of the things I used to do like swimming and skating. I have difficulty with memory and often forget where I parked the car. I also have a lot of trouble finding the right words to use and have been accused of using ‘word salad!’ Its very frustrating! Driving is pure hell as I get lost all the time and it takes forever to familiarize myself with local areas. I have difficulties with people as they say I look so normal, or they can teach me how to do things. Anything I say is dismissed. It seems people do not understand that everything I do is a struggle and I have to think hard when I do things and still a lot of things do not turn out the way they should have. Its kind of like living in a fog all the time. I just try to do my best everyday.

  3. Marty says:

    I loved reading this. It is so true about life and brain injury. I fell 16 feet and really screwed up the left side of my body. Open skull fracture, 2 broken ribs, 3 vertebra, femur,and an impinged shoulder with a torn Labrum. Everything healed as it should except for my brain. I looked great, no scars. The major issues of TBI lingered for 2 years . Then I reached a point that it would be hard to improve from. I was still far from my “normal”. Everyone said I looked fine. They hardly noticed my deficiencies. I always get lost looking for words and forgetting things. It hurt so bad when my brother mentioned that he had all those same problems. I felt so sad after that. Almost cheated out of the sympathy I deserved. To think that I would go through life with “no excuse”. I wasn’t myself and will never be again. Even my wife is having a hard time understanding. She pushes me hard. Tries to remind me of everything. She’s a nurse that has seen people a lot worse off and doing better than I. That left a real taste of bitterness. I know I cheated death. I’m still paying the price. Only to be normal again.

  4. Amos says:

    I can so closely identify with this story. Thank you for your courage in posting this. I too have struggled in the almost 11 years that have passed since my traumatic brain injury, and to my great frustration have been continually reaffirmed by friends and family that I am normal when I certianly do not feel that way. I do feel blessed to have such supportive friends and family, however. Im a student at UCLA currently, and have had a very successful career before attending school, but still feel so disconnected from the world around me. It feels as though I am trapped behind a glass wall, separated invisibly from society and my peers…if that makes sense. I forget my keys, lock my keys in my car, forget where I parked, forget to check details, forget people and the people I do remember I forget their names, forget what I am talking about in the middle of a conversation. It’s so stressful and frustrating, and as much work as I have done to accept the nature of my situation and even have a good laugh about it sometimes, I cannot shake the feelings that I am alone in my pain.

  5. Humpty Dumpty says:

    My accident was around noon.

    I was rushed into brain surgery and found myself home in time for the evening news, that day.

    The doctor, when asked why he was discharging me so soon, said: “He looks normal, he talks fine. He’s OK.”

    A few days later after re-inflammation, a grand mal seizure suggested I was not OK and was back under the knife, but this time at a proper hospital.

    It seems that an epideral hematoma should be carefully monitored as the inflammation can resurface (bad pun).

    This created a subderal hematoma (below the cortex i think) which damaged my brain with pressure and blood.

    (Blood cells are toxic to brain cells; brain cells need oxygen from blood but blood is worse to brain cells than like 10 freshman years in a frat).

    So, due to the doctor’s professional opinion of my normalcy, I suffered far worse damage than the fall itself. The inflammation, unchecked and only discovered after it caused a seizure is why my brain is damaged to such a degree.

    Armed with this story and a carefully shaved head (to highlight the scars), I still get “but you’re just fine, this is just as an excuse for your work behavior.”

    After months and months of physical/mental rehabilitation, I was allowed to work…I had a seizure the weekend before my first day.

    And still, I get the goddammned criticisms. And when someone else is the problem, not me, well: “he’s got a brain injury, we’ll have to do something about that” and not the troublemaker, he gets promoted.

    Am I normal and OK? Everyone says so but I don’t feel OK.

    Is it this medicine the actual cause of my fractured mind?

    Is it everything I lost and can’t seem to get back?

    Does any of that even matter? Normal, abnormal, mentally disabled, mentally stable?

    If I could ignore other people’s opinion of me, would I solve anything?

    Being normal, healthy, successful, wealthy, whatever; it doesn’t matter if a chunk of you’re brain is forever lost.

  6. Mellogurly says:

    “Normalcy After Brain Injury”… WOW. And over the past 4 years I have been feeling completely alienated and well…. not “normal”.

    It is because of the individuals who are willing to share their stories that help remind me that Im going to get through this and, I simply need to accept that this is just the way it is.

    Ironically, despite one of the conditions of my specific type of TBI is “supposed” to adversely affect math skills and multi-step problem solving however, similarly to Mateo’s post, I too am a chemistry major and, if you know anything about chemistry; its difficult with a perfectly intact brain but, those not willing to accept defeat from a “minor set back” from a teeny-weeny bump on the head, will unquestionably face challenges however, overcome them.

    I am sincerely grateful even for tidbits of info from others testimony. It ALL certainly help keep me grounded when I feel desperate and want to run away.

    thank you ALL for your contributions!

  7. Mateo says:

    This is a great post. I am struggling with the same troubles. I do not like to call it suffering because I consider myself lucky to be alive, but not remembering details all non-Traumatic Brain Injured have no problem with is tough.

    I fell off a building in March 2006 as a senior in high school. I was put into an induced coma and after a lot of hospital time and therapy, was able to go back to school at the end of April and graduate high school. I got into UCSB and graduated four years later with a degree in chemical engineering. Obviously, my brain is working.

    I did not have any too-significant memory problems through college (or at least they did not surface), but now they seem to be coming out. I cannot recall little details about movies or past experiences that other people have no trouble with. It is hard to carry on conversations with people because I confuse myself when speaking. Telling “stories” to others is so hard it’s almost painful for me.

    Now that I’m working (for our family company, which I am very fortunate to be have the opportunity to work for and be included in because I do not know how I could operate in “the real world”), life is hard. I do not consider myself normal, and when I talk or even just make myself present, I feel others judging me.

    The struggle continues…and hopefully improves. The only way is for me to just adapt!

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