In 1989, when I was a junior in high school, I was struck in the head by an eight pound ball of iron. I suffered a Grade III concussion, a brain contusion, and brain swelling. I survived the incident but to this day suffer symptoms. This post is intended to raise awareness of the long-term effects of brain trauma and Post-Concussion Syndrome for the millions of people who endure living with a wounded brain.

Sensitivity to Light

If you’ve ever had a migraine, you understand how sensitive you are to bright lights. Imagine that times forever, and you’ll get an idea of what photophobia is like. Prolonged exposure to bright light gives me a skull-splitting headache, and it’s a relatively common symptom of severe concussions.  I can’t spend more than five minutes outside without sunglasses, and sometimes, even indoor lighting can be an issue, especially fluorescents. You know, the kind used in virtually every public building ever. So sometimes, I have to wear my sunglasses indoors, as well. No, I’m not trying to emulate the Blues Brothers. I just want to pick up some chips and salsa without feeling like a marching band is practicing inside my skull.

Years ago, some friends took me to an outdoor art exhibit. Naturally, I wore my prescription sunglasses so I could enjoy the day and not end up curled in a corner whimpering. We got invited to an after-party, and because my regular glasses were at home, I was stuck in shades long after dark. Some hipster quipped about the Terminator terrorizing the party, and it drew quite a laugh from the crowd. There’s no explaining photophobia in that moment. There’s only skulking away alienated and humiliated, having just been owned by a hipster.

Headaches Become a Fact of Life

You know those people who refer to every little headache as a migraine? Not the people who suffer from real migraines; a real one will put the strongest person in bed. I’m referring to the people who call the slightest tension headache a migraine. Yeah, I dislike those people. For a full year after the accident, I lived with a constant headache. Some days, it was a dull ache, others a sharp, piercing ice- pick. On bad days, it pounded my skull so violently I questioned benevolence in the universe. After that first year, the headaches became less and less frequent, but I came to know them the way an aficionado knows cigars. To this day, I also get occasional sharp, blinding pains near my scar.

After that first year, once the constant one faded, I learned to ignore most headaches and accept them as my reality. Today, I still rarely acknowledge anything less than a skull-pounder and even those barely slow me down, so whenever a co-worker rubs their temples and whines, “I have such a migraine” I have to squelch the desire to laugh at them. A real headache debilitates you. A real headache puts you in bed and makes every sound and light a test of your will. People who have suffered brain trauma know that any headache that doesn’t land you in bed is merely a nuisance, hardly worth announcing to the world.

Swiss Cheese Memory

Amnesia is a common Hollywood trope for head injuries, but what they never show is the inconsistency of cognitive dysfunction. Since the accident, some days, my memory works flawlessly and I’ll remember the stat line of the punter for the 85 Bucs. Other days, I’ll forget your name as I’m telling you mine. Others, I lose my car keys twelve times. On really bad days, I stare at my keys trying to remember which one goes to what.

Once, I met John Rhys-Davies at a Sci-Fi convention and got to have a real conversation with him. We talked LOTR and Sliders and the back injury he suffered on the set of La Femme Musketeer. The encounter was nearly perfect until, as we were about say farewell, he quoted a line of Shakespeare. As an English major, I scoured the splotchy patches of my memory for the play’s title and noticed the flicker of disappointment on his face. I wanted to explain about my injury, wanted him to know I wasn’t just a dumb bumpkin, but once more the moment was lost.

Sleep Disruption

Insomnia is a frequent condition after a brain injury. Some nights, I merely have difficulty falling asleep, but once I do, I rest through the night. Some nights I sleep for twelve hours. Some nights, nothing works. On those nights, especially when a few string together, I crave rest so badly, I contemplate hitting myself in the head to see if that will allow me to sleep. Of all the side effects I endure, I feel this one has the most stigma. Go-getters are early risers, but my internal clock has shifted so obtusely noon is now the crack of dawn. None of my friends or family understand why I don’t just sleep like a normal person, and no matter how many times I try to explain that I can’t because of the injury, I still feel like they’re judging me. I look fine. That injury happened years ago. Surely I’m over it by now.

When I got my assistantship teaching assignment in grad school, the department had assigned classes alphabetically, so guess who got two 8:00 AM classes?  Guess how many of my “friends” jumped at the opportunity to trade with me?  For my final year of grad school, I ran on three hours sleep a night, at most. If there can be any positive spin, at least I had time to grade all those papers.

 Nobody Can See the Mark

One of the most difficult aspects of head trauma is that no one can “see” what’s wrong. Even standard imaging techniques like MRIs and CT scans can only detect the subtle changes to the brain while it’s in a resting state. If neurologists can’t detect it, how can the average person? If I come to work on an hour’s sleep because my insomnia kicked in, I sometimes hear whispers through the grapevine that I stayed out all night drinking. If only. When I wear my shades in my office with the lights off, those whispers escalate. If I turn down 8:00 AM assignments, I’m simply lazy. After explaining the accident for the zillionth time, I watch their eyes travel up and down my body, searching for some physical sign of impairment, and even after I show them my scar or let them touch the dent in my skull, the doubts still linger in their eyes.

A few years ago, a colleague slipped and fell on a patch of ice in the parking lot. She had no visible injuries but suffered a concussion from the whiplash of the abrupt fall. Because she “looked” fine, our superiors couldn’t grasp why she couldn’t handle her usual workload. But I understood. All those tiny blood vessels and axons and synapses, as fragile as snowflakes, were violently shaken in a way nature never intended. I reassured her that in time she would find herself again and adjust to her new reality because I had managed to do so, and I spoke up for her with our superiors. Still, because we show few if any external signs of damage, they have a hard time grasping that our impairments are just as real as someone who has lopped off a finger. 

It Forces You to Change Your Life

When you’re in a crowd, your brain is able to process almost all the information subconsciously while you consciously focus on whatever you’re doing. For me, however, crowds are a nightmare. When too many people are moving in too many directions and having too many conversations, my brain becomes overloaded and within a few minutes, I can become completely disoriented. You can try to avoid crowds, but just like light, you’ll soon realize crowds are everywhere. So I take back roads with less traffic, shop during off hours, and work jobs that offer solitude. I don’t often go to live sporting events or concerts or even restaurants because the cacophony of noise and motion still completely overwhelms my brain a quarter of a century removed from the accident.

The worst example of this sensory overload occurred at another convention where I was attending as a guest author. I arrived a night early to get my badge, find my panel rooms, and have a plan, hoping to avoid the crowds as much as possible. Unfortunately, everyone else had the same plan because as the escalator deposited me into the lobby, I found myself in the middle of at least two thousand people, elbow to elbow. Within seconds, my senses were overwhelmed, and I struggled through the throng to find an exit sign.  The disorientation was so bad I had to withdraw from the convention and spent three days at home to recover. Isn’t there a line somewhere about the best laid plans?

It Also Changes Your Personality

Many people know about Phineas Gage, the railroad worker who underwent a major personality change after suffering a brain injury. I’m here to tell you that it doesn’t take a tamping iron fired through the skull to make a difference. After the injury, I became much more introverted and quiet. Like many who’ve suffer severe concussions, I’ve battled depression. Mood swings are common as well.

Not long after the accident (I think I still had my stitches – all 36 of them) my pickup truck stalled and wouldn’t refire. I tried and tried and tried to start it, and with each unsuccessful attempt, my frustration escalated. In a fit of rage, I hopped out of the truck, grabbed a shovel from the bed, and proceeded to beat on the hood until I couldn’t lift the shovel again. Before the accident, I rarely lost my cool, but in that first year after, I was a walking rage machine. Today, it takes quite a bit to push me to that point because I’ve learned to check the cauldron of emotions as they course through me, but if I do reach it, something will probably get broken.

Also before the accident, I was highly analytical and serious-minded with a nearly photographic memory. Afterwards, while much of my analytical ability remained intact, in addition to the memory issues, I became much more creative and free-spirited. While neuroscience still can’t fully explain why this happens, one plausible theory is that it’s akin to Frontotemporal Dementia. Because of the rewiring that occurs, the interactivity within different regions of the brain changes, resulting in a fundamental shift in cognition. More than likely some mechanism that inhibited creativity was damaged by the accident, which “turned on” my latent creative skills. In extreme situations, this can lead to Acquired Savant Syndrome, such as the case of Alonzo Clemons, who suffered a brain injury at three and developed a profound mastery of sculpting despite not being able to tie his own shoes.

Your Brain Becomes a Time Bomb

The weird thing about concussions is once you’ve had one, you’re more likely to get one again; after your first concussion, your chances of getting a second go up 400 freaking percent. And subsequent concussions can be catastrophically bad, even if you don’t have apparent permanent damage from the first. This is because if you only damage a small number of neurons, your brain figures out a way to work around it. The damage is still there, but you don’t notice it, which may falsely lead you to believe that your brain is as healthy as it ever was. Since those connections never heal, another concussion can destroy enough of them your brain can’t work around it any more, leading to more serious problems. Another complication that can arise is called Second Impact Syndrome, where after a concussion, even the slightest bump on the head before the brain has sufficiently healed causes it to rapidly swell inside the skull. Though rare, the mortality rate for SIS is about 50%, and the permanent disability rate from it is nearly 100%.

I cannot stress this point enough. People who have suffered severe brain trauma have to accept that their brain should not be exposed to additional risks. I struggled with this fact for years because I had been a competitive athlete, and after the accident, I felt compelled to continue to prove my toughness. Today, a quarter of a century removed, I recognize the folly of that thinking. Just surviving the incident is tough enough. Your body may still be strong and virile. Your muscles and bones may not have suffered permanent damage from the head trauma, so you sometimes may believe yourself still capable of competing in the sports you love. But your brain is permanently injured. You have to accept that fact and not expose yourself to further damage.

In college, I drove a delivery truck on the weekends. It was a refurbished moving truck with one of the rear doors that slides up like a garage door. One night, the door didn’t open fully, and in the darkness I couldn’t see it as I stepped up into the cargo bay. My forehead slammed into the aluminum guard full force. As I crumpled to the wooden bed (luckily falling into the truck and not three feet down to the concrete parking lot) my final thought before I lost consciousness was that I had just killed myself. Later that night, when I finally made it home, I couldn’t figure out how to make a tub hold water. Fortunately, I recovered with no further permanent damage, but from that moment forward I became much more protective of my head.

Your Health Becomes an Uncertainty Forever

Since brain damage can manifest symptoms in countless ways (or not at all), I constantly find myself wondering every time my eyelid twitches if it’s just normal body behavior, or if it’s my nervous system starting to break down. Having a concussion puts you at much higher risk for diseases like Parkinson’s and Alzheimer’s. The Mayo Clinic found that even a mild concussion made you four times more likely to develop Parkinson’s, and another study found that three or more concussions made you five times more likely to suffer early-onset Alzheimer’s. Additionally, multiple concussions can cause Chronic Traumatic Encephalopathy, which is the degenerative brain disorder that has prompted the NFL to address the concussion issue. And until neuroscience progresses further, there’s no real way to predict if you’ll get it until you start exhibiting symptoms.

Ever since the accident, if I hold my arm a certain way, my left index finger pulses involuntarily. For twenty-two years, I thought little of it, other than slight embarrassment when it occurred while I taught. Three years ago, my left hand began trembling more frequently and would occasionally cramp in a way that drew my fingers together in a twisted knot. I began experiencing other symptoms that mirrored MS and Parkinson’s. For six or seven months, while doctors ran test after test with no answers, I lived in absolute terror that the accident had slowly degenerated my brain to a lethal point. It turned out to be an unrelated issue concerning gluten sensitivity, and today, I won’t say I’m back to normal, but as long as I completely avoid gluten, I do fairly well with it. But the lingering effects of that scare are that I can no longer tell if I’m aging normally or degenerating more rapidly than my peers. I now fear every sharp pain near my scar, pains I ignored for twenty-two years because they were simply my reality. And where I once shrugged off the memory lapses, I now question if my recall is worsening or if I’m just imagining it. Those fears are real, as real as any of the other side effects, and living with those constant concerns for my brain’s health can become rather tedious.

You Slowly Gain Acceptance and Adapt

Despite all these limitations and discomforts, over time, I’ve learned to accept my reality. The process wasn’t easy, and for the first five or six years after the accident, I wallowed in self-pity over everything it had taken from me. Then, one day, the epiphany struck me that I was lucky just to be alive. I’ve since learned, through years of trial and error, to find pleasure in the things I can still do and let go of the things I can’t. I’ve learned to appreciate the little things because I know firsthand the fragility of life.

I’ve learned to stop trying to conform to society’s expectations of who it thinks I should be and embrace the reality of who I am.  I’m one who has survived a trauma that should have killed me, and that fact alone is pretty special. I’ve carved out my niche based on the skills the accident unlocked, and I’ve learned to be grateful for each and every day regardless of how many times I lose my keys or misplace my sunglasses because I’m simply still here.

If you’re living with the effects of Post-Concussion Syndrome, please know you’re not alone. Please know that you can carve out a fulfilling life if you learn to work within and around your limitations. You’ll never again be the person you were before your trauma, but in time, you can find the new you, one who is a survivor, one who discovers new talents you never knew you had, and one who finds pleasure in the little things. In time, you too can learn to operate within the boundaries of your wounded brain.

D.A. Adams is bestselling author of The Brotherhood of Dwarves series and a survivor of severe brain trauma. You can follow him on Twitter @authordaadams

A special thank you to Chris Radomile, who assisted with the development of this article. You can follow him on Twitter @raddystuition