As a TBI survivor, the nature of the injury takes on a different character – it has a different meaning for me. All the statistics matter in the grand scheme of things, but that all gets too overwhelming and disorienting. What matters about the nature of my injury (or shall we say, injuries, since I’ve had a number of them), is that it has always been chronic – long after the obvious issues had passed.
Each time I was concussed, I lost a part of myself. Sometimes I built that part back, sometimes it stayed missing. Some of the things I’ve lost seem to have disappeared for good.
When I was four, I was in daycare in a two-story house that held about ten kids each day, while their mothers worked. I was small for my age, and I had to stay downstairs with the little kids, which bothered me to no end. There were rowdy boys and girls upstairs who were roughhousing and running around, and I wanted to be up with them. One day, I sneaked up the stairs and started running around with the “big kids”. It was so freeing, to be with my peers, instead of stuck with the little kids down below. We ran around, yelling and screaming, chasing and climbing, and I felt like I was a real human being, for once.
In the course of roughhousing, I climbed up on a chair and it tipped over and went out from under me. I fell hard, hitting my head. Down for the count. I faintly remember one of the big kids running to get help from the woman who cared for us, and I remember her screaming at the other kids for letting something bad happen to me. Everybody felt badly, and the other big kids really had hell to pay. They checked me out, but they didn’t call a doctor. After that, I was not allowed upstairs anymore, but I kept trying. Because I wanted to get back in there. I wanted to be part of the action. I wanted that feeling of being wild and free and not under the eagle eye of our caretaker. But it was gone, baby, gone. And I was stuck downstairs with the little kids again.
When I was seven, I fell down a flight of stairs. I don’t remember anything between the time I was standing at the top of the stairs, and when I was standing in the middle of the dining room, dazed and silent. I have no recollection of how that affected me at the time. But concussions have a cumulative effect, and that fall – whether I was concussed or not – could have set me up for later consequences.
When I was eight, I was attacked by a couple of kids and knocked out briefly. Before getting hurt, I had always been a shy kid – shy, but still social, and the sort of person who made an effort to be kind to others. After my injury, I found myself becoming increasingly aggressive towards the other kids around me. I taunted them and called them names, and if I’d been big enough, I would have pushed them around, too. I heard myself saying mean and hurtful things to the other kids around me, and I couldn’t stop myself. I knew it was wrong, and I didn’t want to be doing it, but it seemed like someone else had taken over my identity. In the space of a few days, I went from being one kid of person to a very different one. And I didn’t much care for the person I’d become. Yet, I was helpless to stop it. Wanting to protect others from me, I withdrew and avoided people. I couldn’t be trusted, I believed. I was a problem walking around on two legs, and I needed to keep others safe from my impulsive cruelty.
When I was ten, my family moved, and the new friends I made in our new home were good-time hell-raisers. They seemed to be having the most fun out of anyone, roughhousing and playing hard, and they welcomed me with open arms. It was such a relief, after the self-imposed exile I’d been under before. I had a blank slate. I had a fresh start. And these were my kind of kids. Everything with them was extreme – as extreme as it can be, anyway, when you’re ten. They fought and brawled and pushed and punched and tackled, and after the isolation of my past life, I felt like I was finally with my kind of people again.
One day when we were playing, I fell hard, and I hit my head. Everything got weird. The world got hazy and dim, then it started to shimmer and shake before my eyes. When I got up, I was wobbly on my feet, and I stumbled away from the scrum pile to get my bearings. I was halfway across the field before someone got to me and led me back. I felt sick to my stomach, and I knew something wasn’t right.
After that, I pulled away from my new friends, and they felt hurt by my apparent rejection. When I made up some excuse about not wanting to play rough because I might get my clothes dirty, they ridiculed me, and that began a year-long gauntlet of teasing, bullying, making a laughingstock of me, and inciting all the other kids to shun me. My grades dropped precipitously, and I went from A’s to F’s in nearly all subjects. The new me, who had found new friends who knew how to really have fun, was suddenly gone. And I was back to that shadow life from before.
Several years passed without an obvious concussion that I can single out and recall specifically. But I always played rough, and hitting your head was a regular part of living. Falling or hitting my head, feeling dizzy and wobbly, and getting back into the game was a regular part of my life. Those things just happened. You didn’t worry about them, and you certainly didn’t stop playing because of them, or tell anyone about them. Getting your bell rung was just part of the game, and I took it in stride.
When I was 13, I was climbing a tree and had a brief lapse of attention. I let go of the branch I was hanging onto, and I fell about 10 feet onto a large branch. My back hit it at a 90-degree angle, and my head snapped back hard. I could still move, and I rolled off the branch, the breath knocked from me. I couldn’t breathe. I got on my feet and tried to catch my breath, but I couldn’t. It wasn’t happening. Feeling like I was drowning, I started for home – only a few blocks away – and by the time I got to my street, I could take in a little bit of breath. I was wobbly and shaken, and everything felt weird. I called my best friend to check in, but they were with someone they were dating, and they couldn’t talk.
The weeks after that fall were chaotic. My friend had been feeling depressed and took some pills to sleep, and I freaked out. I called some other friends and we went over to their place. They weren’t responding, and I freaked out. We called 9-1-1, and I lost my shit — completely freaked out, crying uncontrollably and making people wonder what the hell was wrong with me. They had known me as a cool, chilled-out individual, but there I was, falling apart over what may or may not have been a suicide attempt.
My friend told me they couldn’t hang out with me anymore. They said they couldn’t associate with me. They gave me a letter where they’d collected their thoughts, and they tried to explain the situation. The letter said I was unstable. It said I wasn’t the sort of person they should be seen with. It said I was a danger to them and their mental health and it would be best if we parted ways. It was all a blur. I didn’t know what was happening. I sat there dumbly as they wrote me off, and I never sought them out again.
In the following summer, I was hanging out with some kids on my block. It was the summer before middle school started, and I was about to transition to a whole new school district, with all new peers. A bunch of us were hanging out, and we noticed a couple other kids down the street horsing around. For some reason, I thought it would be cool to provoke the kids down the street, so I mimicked their movements and mocked them from a distance. All the while, I was thinking it wasn’t such a great idea, and I should stop. The kids I was with tried to get me to stop, but it felt like I was being impelled by some invisible force I was powerless to halt. I kept up the provocation, until the kids down the street got angry and started yelling threats.
I shrugged them off, but when school started in the fall, I discovered that one of the kids I’d been mocking, was a grade ahead of me. And they had friends. And all of them were a lot bigger than me. The first day of 7th grade, they found me and encircled me and let me know I was in for trouble. I spent the rest of that year on the run, trying to not get my ass kicked by those kids. I spent a lot of time ducking behind walls and hiding in bathroom stalls with my feet pulled out of view. It was one long year of cat-and-mouse, and I was the mouse.
Two years later, I started high school, and things got better. For a while. Nobody knew what a freak I was. Nobody had any reason to suspect me of anything. I’d kept a low profile for the last couple of years, and nobody really knew me, anyway. I’d also grown six inches, since the bullies had last seen me, so I was less easy to intimidate. The gang who’d bullied me in 7th grade, found me on the first day of 9th grade, but I wasn’t the 80-pound weakling I’d been, two years before. I was as big and as tall as they were, and I was a lot less fun to push around. So they split. And they left me alone.
I found new friends, I got involved with sports, and I felt like I belonged somewhere more than I ever had. Sports – and the friends I had through them – gave me an outlet for my frustrations, and they also gave me structure I desperately needed in my life. There were clear rules to play by, and as long as I managed that, I was good. I was a gifted athlete, and I loved to play and compete.
Those four years of high school saw me playing a lot of sports – both organized and pick-up. I’m fortunate that I didn’t play organized contact sports in high school. I don’t doubt that my aggressive play would have gotten me hurt, again and again. In fact, there was a part of me that avoided all high school contact sports, because I knew I could get hurt – like I had in 5th grade, when everything had gotten so weird and wrong at the bottom of that scrum pile.
I ran cross country and track instead, and that got me away from people on those long practice runs. In my free time, however, I was a full-on contact sport player. Soccer. Football. Lacrosse. Baseball and softball. I preferred the games where everyone played rough, and I remember very clearly getting “dinged” a bunch of times, shaking it off, and playing through the feeling of sickness and disorientation… a rush of energy pulsing through me after each blow to the head, that made me feel like I was invincible. It didn’t matter that I was less coordinated and had trouble staying on my feet. I felt like nothing could stop me, and that was good enough for me.
Off the field, plenty was stopping me. I was a gifted student and my family was full of teachers, professors, and other professionals. It was expected I would get exemplary grades, and I tried. But it was spotty. There wasn’t a lot of consistency to my performance. One test, I’d do great, then the next… not so much. I’d study like a crazy person and think I’d aced it, then I’d get a C. I joined clubs and tried to write for the school paper, but I couldn’t seem to finish anything I started. I’d begin a story, but halfway through, I’d lose steam, and getting the final product from me was next to impossible. If I studied intently during the study hall before a test, chances were good that I’d ace it. But if I spread out my studying over the course of a few days, I couldn’t seem to retain anything. Everything got jumbled up in my head, and I spent a whole lot of time covering my tracks by pretending to know what the hell I was talking about, and guessing. The fact that I guessed right a lot of the time, made my outward life easier. But inside, it just confused me all the more. I literally did not know whether anything I said was right or wrong, till after someone told me. I learned to fake it and cover my tracks. And I also learned to distrust myself about nearly everything I was supposed to think or do.
Those were also the years when I started drinking. I smoked some pot and took some drugs, but alcohol was my drug of choice. I spent a lot of time on the weekends, driving the back roads and drinking cheap wine and a bad excuse for beer. It was amazing. It was freeing. When I was drinking, no one knew – or cared – that I didn’t have a clue what the hell was going on around me. All that mattered was that I had a fake ID, and the bravado I honed while faking “normal” made it easier for me to pull a six pack out of a cooler at a local bar, walk up to the counter, and present my fake ID without batting an eye.
How many times I fell and hit my head while I was drinking, I’ll never know. I do know I was a falling-down drunk almost from the start, and now and then I was blacked out, so who can say? I soldiered on, getting decent enough grades to keep me out of trouble and keep off the radar of disciplinarians. So long as I was still a decent student, they left me alone.
During that time, I had a few more concussions that I do remember. A pickup game of football, when I was tackled hard and landed wrong. Everything was in slow motion, as the ball popped from my grasp, and I felt myself land hard underneath another player who was twice my size and weight. Everything went dim and blurry, followed by a split second of absolute silence, then “the lights came back on”, with the world looking squiggly and hazy, and a rush of intense energy filling every cell. It was as though someone had flipped a switch, and suddenly, parts of myself that were “dim” before, came online – in technicolor.
When I got up, I was wobbly and couldn’t walk in a straight line. I kept stumbling, because the ground kept swaying underneath me. I insisted on continuing to play. I just needed to walk it off. I’d be better. But after a few more plays, I wasn’t better – I was worse – and the rest of the kids knew I was done. I didn’t want to stop. No way, no how. That feeling of invincibility was coursing through my veins, and I needed to move. To run. To jump and throw and catch and tackle. C’mon! C’mon! I urged. But the rest of the kids looked at me with a hint of fear in their eyes.
What happened after that, I can’t recall. I went back to my life. Back to my drinking. I wasn’t running cross country that year, so I had more time in the fall to party and work, so I could make money to save up for college.
Once more that senior year, I fell. Again, the same story, this time in a friendly soccer game between kids in the Spanish and German language classes. I either got tackled or slipped, and when I fell, everything went dark briefly, then the lights came back on, and I felt that familiar rush. I was “on” again. I felt like myself again. The only problem was, I couldn’t walk – or run – in a straight line, and I kept running in the wrong direction, taking the ball to the wrong goal. At least I never scored against my own team. That’s one good thing.
The teachers yanked me before long, and I protested. But I was also not feeling right – sick to my stomach, hazy, wobbly. I stayed on the sidelines, feeling stupid, cheering my team on, wondering what the hell happened to me.
In the 30 years since high school, I’ve had four more concussions – three from motor vehicle accidents, one from a fall down some stairs in 2004. The car accidents weren’t dramatic – I was t-boned in one, and rear-ended twice. In the first rear-end accident in 1988, I wasn’t injured badly enough to need medical attention, but I had trouble reading, I was confused and all over the map in my conversations, and I was speeding a million miles an hour. People looked at me with concern, but I thought I was fine. I just had a lot of energy. That reading thing? Yah, so what? It righted itself, and I calmed down eventually, so the episode never really registered with me – till much later, when I learned about mild TBI.
When I was t-boned (on the driver’s side) again, I wasn’t hurt badly enough for medical attention, but I couldn’t understand anything that anyone was saying. It was like watching a movie where a bunch of frames were missing. Everything sounded stuttery, and it was like people were talking “Jabberwocky” to me. Light also blinded me, and noise was too much for me. I just stopped going to my job. There didn’t seem to be any point. I couldn’t understand what people were saying, and I couldn’t take light and sound, so I just quit going. Didn’t call anyone, didn’t return anyone’s calls. Just quit. And spent my days drinking beer and smoking cigarettes, while sitting around. Just sitting.
The third time I was rear-ended, I couldn’t read for days. I was driving a rental car, and I had to fill out paperwork after inspecting the car, but I couldn’t make out what the claim form said. Nothing made sense to me. None of the letters meant anything, and they certainly didn’t fit together. I went over the car with what I thought was a fine-tooth comb, and I didn’t see any damage. I was shaky for days after that, and everything was covered in a thick fog for me. I called the car rental folks, swore up-down-left-right that there was no damage, and I signed the claim form and sent it in, without knowing what I’d signed. Later I saw that the rear side reflector had popped out. Funny… I’d checked that part of the car a bunch of times, and I had never noticed it gone.
When I returned home from my trip, I was manic and uncoordinated. I slammed my foot so hard on a desk at work, I had to go to the emergency room. It wasn’t broken, but I had other issues. I was all over the map, attention-wise, and I was wildly manic. I also couldn’t stand my job. It was a good job, and I was lucky to have it, but it was making me crazy (or so I thought) and I had to get the hell out of there.
Within a few months, I jumped ship for a better job in a new field I was lucky to get into. My new manager saw the potential in me and wanted to promote me to a managerial position. What they didn’t know, was that I was still dealing with the after-effects of concussions – real problems with staying focused, keeping my cool, and communicating with others. All those years of coming up against people problems had convinced me that I wasn’t fit for a higher level position. And at the time, maybe I wasn’t. Long story short, that one missed opportunity led to many other misses, and stalled my career (and earnings) multiple times.
Each of these injuries over the years threw me off in some small way. They weren’t catastrophic, but they always threw a wrench in the works of my life – and also my perception of myself. Little things add up to big things, and that’s what happened with me.
My last TBI in 2004, when I fell down a flight of stairs, was the final straw on the mild traumatic brain injury camel’s back. Although I wasn’t knocked out for long – just a few seconds, if that – the cascade of damage was far worse. Over the course of the following six months, my comprehension and behavior deteriorated being manic and distracted, to aggressive and hostile and openly attacking people verbally at work, while blowing up, melting down and weeping uncontrollably for hours at home. Money disappeared from my bank account without any clue why or where or when. I skipped from high-level positions to lower-placed jobs for several years, while my resume became less and less attractive to potential employers. My spouse’s health worsened in obvious ways, and I couldn’t see it clearly enough to say or do anything about it.
My life was chaos for nearly ten years. The first four years, I was in a dizzying slide downhill in the aftermath of an undiagnosed mild TBI, watching my life savings evaporate, my working relationships fray beyond repair, my marriage flounder on the rocks, and my inner world turn upside-down with emotional extremes and behavioral problems I thought were completely justified.
For the past six years I have been engaged in active recovery, with the help of a competent neuropsychologist who never gave up on me, online forums, journaling/blogging, doing a lot of research and thinking, finding TBI recovery resources online, and a fair amount of dumb luck that made my path cross with others on the same type of path as myself. It hasn’t been easy, by any stretch. There have been many ups and downs, and I’ve been on the brink of despair a number of times. But now I’m very much on the good foot. The proverbial ship of my life has righted, as of now, and thanks to all the help I’ve received, I’m no longer in danger of losing my house, my marriage, my career, and my hope for the future.
Looking back, the strangest thing is that my TBI issues immediately after my fall in 2004 paled in comparison to the changes that took place in the following years. It was no fun being disoriented, confused, not being able to sleep through the night, having light and sound sensitivities that drove me nuts, and dealing with all the emotional fallout from myself and those around me.
But the worst havoc didn’t begin until months after my accident. And then it just got worse, in a downward slide I could not seem to stop. The chaos that consumed me, months and years after my actual “mild” injury, took a toll at a far deeper level than the physical or mental. My downward slide wasn’t at all proportional to the severity my injury. I just bumped my head. That’s all. It was a mild traumatic brain injury. But the long-term effects of that were significant and severe. and I’m still dealing with deficits – physical, cognitive, emotional, and behavioral.
The most challenging deficit of all is a loss of a Sense-Of-Self – knowing who I am, what I’m about, and feeling like myself.
I’ve been on the road to recovery for several years now, but I still don’t feel like my old self. I feel as though I’ve lost the person I was prior to my fall in 2004. Despite my past shortcomings and my failings (which were many), at least that person I used to be, was familiar. To myself and my loved ones. Looking back, each time I got hurt, I lost something different – and each time, I lost touch with a certain sense of myself, that has never fully recovered.
It might sound unlikely, but I believe that in the long run, losing your Sense-Of-Self to TBI is a far more debilitating symptom, than just about any others.
Something of us gets lost in the crush of traumatic brain injury. Be it mild, moderate, or severe, the shearing and twisting and fraying that happens in the connections of our brain disrupts our understanding of who we are, how we are, and how we need to be around others in the world, in ways that can short-circuit TBI recovery in significant ways.
Ignoring this, or minimizing it, makes no sense. And in the coming pages, I’ll explain why.