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When People Say I'm 'Too Smart' to Have a Brain Injury

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With as many as 1 in 45 Australians experiencing an acquired brain injury, it would be easy to assume that its effects and variations are well known and publicized. Unfortunately this is not always the case. This was most recently demonstrated to me when I returned to university and was greeted by blank stares and reiterations of “I’ve never even heard of that.”

While the primary reaction is often one of confusion or complete ignorance, once I explain in simple terms what exactly an acquired brain injury entails, I can be met with looks of disbelief. In the most literal sense, an acquired brain injury refers to any damage to the brain that occurs after birth. It can be triggered by everything from tumors, to strokes, to accidents and alcohol, to neurological diseases.

In my particular case, I have an acquired brain injury as part of my post-encephalitic syndrome. Due to a virus, my brain became inflamed and some of its functions were impaired or changed. That same virus has left me with a number of physical conditions, some of which relate back to the brain relaying incorrect signals to systems in the body.

Personally, I seem to exist in some sort of paradox: not only do I have an acquired brain injury, I am also extremely bright. It seems impossible for some people to accept that my brain can both malfunction and also work extremely well. That I can debate animatedly about highly intellectual concepts at university and then suddenly be unable to even find my way to the train station.

My intelligence was untouched by my brain injury, leaving me with a malfunctioning body and brain but with the clarity to be often completely aware of what is happening to me. My memory – I have been reliably informed – is at least as good as many of peers; my writing is still eloquent, my general communication excellent.

In being both bright and brain injured, I pose a problem to many perceptions of brain injury. Many people assume that anyone with a brain injury is somehow intellectually less capable. When I inform someone of my brain injury – whether in education or in passing – the
response is always that they would never have guessed it because “you’re so smart.” If it’s not a comment on my intellectual abilities, it’s a comment on my presentation; apparently it’s considered unusual for someone with a brain injury to be out wearing makeup and a pretty dress.

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My brain injury did not change my intelligence, but it did and does impact many other areas of my life. I am easily fatigued, to the point where after a day at university I’m so exhausted
I can’t even speak. I deal with chronic pain. I have a movement disorder that means I have lost the ability to walk automatically and have to consciously exercise every muscle in my legs. I struggle with migraines, vertigo and seizures. My eyesight has been permanently damaged. All of these things come under the umbrella of an acquired brain injury.

My sense of self has also been impacted. At times I have difficulty recognizing the person I am today, who has lived through so much but carries on anyway. That my intelligence remains with me feels like a gift that could so easily have been taken away. I am exceedingly
aware that this may not be the case for others, but I still wish to challenge the perception that those with brain injuries are in any way intellectually less capable. Many of us exist and function in society invisibly and anonymously; we go to work and school, we hold down jobs, we write novels, we do everything anyone else can.

The hope that accompanies acquired brain injury is the possibility of recovery. Hard-won progress can be achieved as neuroplasticity can allow the brain a capacity to recover what may have been lost in ways other organs cannot. I have seen the proof of this with my own eyes. Two years ago I couldn’t read for 15 minutes; now I can read for several hours. I’m still
not where I was before I had encephalitis, but I am more than capable of keeping up with my peers.

My personal prognosis looks good. I may never completely shake the effects of my brain injury, but I will in all likelihood return to most of my abilities. It may take several more years – and be extremely hard work – but for my brain, it may be that not all injuries are permanent.

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How I'm Learning to Accept Myself as a 'Frequent Faller'

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I’m a “frequent faller.” I fell a lot this summer, and I hated it. I have reduced balance, one of the aftereffects from two brain surgeries I had in 2005. Partial facial paralysis, double vision, and partial body weakness are the other big ones. Because the doctors had to go into the pons, the center of the brain where things like breathing, swallowing, and equilibrium are controlled, they had to lift up the cerebellum, the part of the brain that controls, among other things, coordination, precision, and accurate timing.

Messing with those two parts of the brain has far-reaching effects as far as moving about is concerned. In the past, I could just be standing still, talking to someone, and suddenly tip sideways, as if on a ship. I would walk from room to room of my house clinging to walls. Now it’s much better, but I always need a railing going up or down stairs, and doing things like walking and talking simultaneously can take a lot of concentration.

One fall this summer was on the stairs on the way to my son’s daycare. The stairs are concrete, and nothing is so hard as concrete when you slam on it. I feel embarassed to say I was carrying my son, and when I fell on the stairs I also dropped him. Not far, he wasn’t hurt, but he was crying. I had scrapes on my knees and elbows for weeks. The knees I could cover up, but the ones on the elbows kept peeking out from sleeves and under bandages. When someone would ask what happened, sometimes I told the truth, but sometimes, inexplicably, I made up something. I’d say I fell somewhere else, doing something else. I don’t know why. Why would that sound any better?

Is it the shoes? Sometimes I want to blame it on my shoes — sandals. Birkenstocks. Maybe they are too loose on me, and catch in that place between the toes and the shoe. But then I remember that just two weeks ago, I fell wearing my tennis shoes. I was wearing my new yoga pants and ripped them, and the blood from my scraped knee never came out.

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Maybe it’s because we moved to a new city. Really — after more than a decade of living in the same town where I knew the best routes to everywhere, I was negotiating new territory, and I had to figure out the safest routes, with the most level ground and least potholes, by trial and error.

I always have scrapes and bruises on my arms and legs. I only actually bite it once or twice a month, but there are countless times each week when I misjudge, say, a doorway and slam a shoulder, or stumble and knock a hip around a sharp corner.

Of course, people don’t understand. Why would they? My realtor jokingly asked my husband if he’d been beating me. It was hard to smile.

I have a nurse friend who talks about how angry nurses get when a patient gets out of bed when they shouldn’t and falls. People do not like it when adults fall when it could be avoided. I have a personal trainer, and we do balance exercises like trying to walk forwards and backwards in a straight line, playing catch standing on balance balls, and standing on one foot for as long as possible. My trainer used to feel bad about my tears of frustration, apologizing over and over, but now he doesn’t. When talking to others, I try not to ever bring up that I have a personal trainer, and this goes back to my embarrassment about falling, too.

Why do I hate to admit to having a trainer, to falling? It has something to do with not wanting to admit I’m different, but why should I worry about that? I’m 34 years old, what do I care? Maybe because walking and having balance should be so simple. It seems like something I should have control over. Not being able to balance makes me seem so incompetent in other areas of my life. What can I handle if I can’t handle this?

I have two small children I can mother, although it may not always be pretty. It means having conversations with my daughter, a kindergartener, about why my balance is bad or my left eye doesn’t move, and making peace with questioning looks from parents in the pick-up line. I have a husband who loves me fiercely, even though I struggle at times with the image the world sees of a “normal” man with a different-looking woman. I’m also a professor, a job I love and cherish. To me, teaching is about connecting with students, and I love nothing more than having those moments in the classroom that leave me feeling reset and centered — I have found that feeling nowhere else.

I can handle life, even though it appears otherwise at times. Maybe I’m afraid that when I fall, I have lost my ability to be someone whom others understand, to play a part in the world, to relate to others. I need to remember that being different isn’t the problem — feeling different is. Feelings are valid and should not be ignored, but I need to remember to look out, look around me, and take stock of all I have handled that is far more complex than walking a straight line.

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My Traumatic Brain Injury Is an Invisible Injury

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I had to walk away. My daughter and her boyfriend were engaged in a game of passive-aggressive argument due to the fact that he invited a rather gorgeous Cali chick to meet them at the Santa Monica Pier. Pitch black, the only light emanated from the Bubba Gump restaurant sign behind them. I turned and moved towards the other side of the pier, determined to go back to the Bombino concert and calm.

“Are you OK?” the Sabrett hot dog guy asked as he attempted to pull me up. Face down, blood pouring from my open lip, it was impossible to respond. A man handed me a bottle of water and got down on the ground next to me. “You are really hurt. We need to get the pier police,” he murmured into my ear.

I was lying on a plastic couch as a police officer hovered over me. “Try to stay calm, OK. I’ve called the fire department and they’ll be here soon. We need to transport you to the hospital. Are you with anyone?” I nodded and told him that my daughter was standing in front of Bubba Gump.

I remember the EMTs talking to me. The one driving was flirting with my daughter and her girlfriend. Later my daughter would tell me that the firemen and EMTs were “hot.”

“You took quite a fall,” the ER doctor said. “We will have to stitch up the lip and put a brace on your knee. Looks like you might have hit your head pretty bad, too.”

My stepmother, her purple hair filling my line of sight, tried to make jokes, but I don’t remember them being funny.

On the plane home to New York, I wore a Warner Brothers hat in the hopes that no one would look at my face. My face was swollen, covered with scabs and bruises, stitched up. I was a walking Frankenstein.

For a month, I felt OK; things were healing and I was going about my daily life. Then I started to do strange things. I started the car engine and attempted to pull out of a garage whose door was closed. Lost keys, lost clothes, lost words. Suddenly, I was unable to understand anything people said to me. My hearing went. Going to the grocery store was impossible as the lights, the aisles and the shoppers would bring on a panic attack. Focusing on anything was impossible as nothing made sense. The inability to do the things that I had done before the fall became a cause of frustration and concern, especially since I was due to return to work as an English professor within the month.

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My neurologist told me that I had suffered severe frontal lobe damage and had cognitive issues. She sent me to Burke Rehabilitation Center, the same center that Christopher Reeve had received treatment. At Burke I underwent two weeks of testing, two weeks of difficult work.

“Ellen, I’m afraid you have some serious deficiencies and that you’ve done some damage to your brain,” my doctor said. “You’re going to have to learn new ways to do things in order to get through the world. And you’re not going to be able to teach ever again.” My IQ, something I was always proud of, was that of a child. My brain, the thing with which I made my living, had been totaled.

My entire life up to that point had been focused on intellect, on reading and writing, on analyzing, on educating others. The doctor’s words were nothing short of a death sentence.

Learning how to think again meant learning how to let go of the me that used to be. I went back to teaching but was honest about my difficulties. During the fall semester, I taught in the wrong classroom and admonished students for not doing their reading. When they told me they were not my students, I played the absent-minded professor card.

Every day I had to input what I had taught in each class to avoid reteaching the same lesson plan the next class. Post-it notes covered my desk at home and my desk at work. Not only did I have two hard planners, I had two computer planners. I begged my colleagues for help remembering how to get to locations on campus. I shared with my students my aphasia, which was at its worst during my 8 a.m. literature classes. I apologized when I forgot names, when I forgot to grade papers, when I couldn’t understand their questions.

I got angry quickly and could not identify why. My tears fell without warning and my emotions couldn’t be controlled. There were days of pure exhaustion, days of pure energy. There was a week of wanting to die followed by a week of cutting my arms with a scissor.

traumatic brain injury is an invisible injury. You cannot see that my brain has been severely injured, that my frontal lobe has suffered irreparable damage, that my ability to find words and to understand them has been altered. My brain no longer allows me to go to the mall, to be in crowds of people, to comprehend much of my daily life. Refusing to give up teaching means that I must create tools that allow me to work on a minute by minute basis.

Do not ask us why we are depressed, why we seem angry, why we cannot find the words or understand what you are saying. Do not ask why I cannot focus on a movie or sit through a lecture. Do not ask why we are no longer comfortable in crowds or why we have everything delivered. Do not ask why we no longer call you every day or why we say no to going out. Those of us with this injury are warriors, fighters against an enemy that only we know.

The stitches served to repair the outer appearance but the inner trauma has not, nor will it ever, be fully healed. The brace on my knee allowed me to walk, but the brace I’ve created (i.e. the new tools) has allowed me to live on a daily basis.

I will never be the person I was before I walked away from my daughter and into the darkness of the Santa Monica Pier on August 8, 2013. For me, and for those with such injuries, the world we live in now is no longer the world we once resided in. We did not ask for this new life but we do ask for understanding and patience and love.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255. You can reach the Crisis Text Line by texting “START” to 741-741.

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5 Tips for Pursuing Sports After a Traumatic Brain Injury

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I sustained a traumatic brain injury in 2014 at 21 years old. I was always an athlete, but after my injury I couldn’t participate in sports like I used to. Now I’m proud to call myself an adaptive athlete, participating in adaptive sports ranging from snowboarding to biking to kayaking. I enjoy reaching out to others with brain injuries and letting them know they aren’t “stuck,” as I used to think.

When you have a brain injury, whether it’s mild or severe, you may not be as coordinated as you used to be. You may have forgotten how to move or use your muscles in a different way. For me, the basics were a big struggle. From walking to talking to holding a fork, I was back at square one. So, I understand if you feel like you just can’t figure out what to do. I totally feel your pain. Here is a list of things to remember when you are giving your favorite sport a go again.

1. Your brain may not be ready — and that’s OK. Let me repeat — it is OK. You know why? Because when you keep on practicing, your brain will slowly remember what to do. You’re training your brain again. In your mind, you’re like “OK, I’m going to kick this soccer ball,” but you try and it just isn’t happening. Your brain is like “Woah, slow down. Let me figure this out.” Take things one step at a time. Literally. And keep on doing that until it becomes easier and easier.

Courtney snowboarding.
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Courtney snowboarding.

2. Take a lesson. If someone told me this two years ago, I would have laughed in their face. I snowboard. I also have a lot of pride. I know I’m not the only one who hates the whole “asking for help” thing. But I would have never been able to snowboard again without the help of my coaches. Please look into adaptive sports. I go to a fantastic program called New England Disabled Sports in Lincoln, New Hampshire. I would recommend this program for anyone, even a person without a disability. My coaches there have gotten me standing up on my board and actually snowboarding. Although I don’t ride like I used to and I fall, my coaches don’t let me sit there and be mad at myself very long.

Adaptive sports has come such a long way. There are programs all over the world, and they will get you set up and going. I could go on and on about how much adaptive sports has done for me.

3. Have a support team. Having a group that will support you in your goals is very important. When you feel down on yourself or too lazy that day, they’ll be there to keep on pushing and motivating you. Heck, I’ll be part of your team! There is no better feeling than having a bunch of people supporting you through this new journey!

4. Wear a damn helmet. If you are pursuing a sport that requires a helmet… just put the damn thing on. Your brain is already damaged; it’s even more fragile. Another small whack to your noggin could be ten times worse than it is for an average person without a brain injury. I know being younger, not wearing a helmet can be the “cool” thing to do, but it’s not a smart thing to do. You can even clutter your helmet with cool stickers and decals. You should see mine!

5. Remember you have a brain injury. When your brain is damaged, it may never be the same again. You may not recover all the way. Don’t push yourself to do difficult things right away. Make small goals for yourself.

I used to be a college soccer player, so you could say that I was pretty good at running. I decided to go to the track and walk 2 miles. I started getting really pumped. I was convinced I could jog the rest of the way. I start kind of running, but my legs got tangled and forgot what to do, so I ended up falling. That was a big ego crusher! Moral of the story — take it slow! Make a plan and go over it with someone, such as your physical therapist, and see if you are at that point in your recovery. You can even ask your physical or occupational therapist to implement your sport of choice into your session.

Disabilities should have no boundaries. Don’t let people tell you that you are unable to do the things you love. There are always other ways to do them. Adapt and overcome.

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How My Trike Makes Me Feel 'Free and Alive' After a Brain Injury

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​I am Gary Nagel, and I am one of The Mighty, a brain injury survivor. I grew up on a dairy farm in rural Wisconsin and enjoyed farming, but what I really wanted to do from a young age was own a small business. I decided to study business and accounting, and paid for my first year of college by selling the eggs from 100 hens I owned. That was a lot of eggs! My passion for many years was running businesses and doing outdoor activities like camping with my son, cross-country skiing, playing basketball, chopping wood, plowing snow with my tractor, and playing with my dogs.

In September of 2013, I had a severe brain injury, and it felt like everything was taken away from me. My body no longer cooperated, and I couldn’t do most of the things I used to be able to do. So many days at the rehabilitation center and at home, I wanted to just give up; everything was so hard! But I am an overcomer, so I decided to keep on truckin’! I have always felt I had something to give and share with others; now I would just have to figure out how to do it in a different way.

A year after my brain injury, my wife helped me find my new passion: riding a TerraTrike, which I named The Scorpion. The first time I rode my recumbent trike, I felt so free and alive! I did a test ride in a big, empty parking lot, and I zipped around shouting and singing. My wife and I were crying because we were both so happy. When I ride my trike, people are intrigued by my cool “ride,” and I am just a cyclist like everyone else, not “a guy with disabilities.”

Gary on his trike, racing in the Special Olympics
Gary racing in the Special Olympics.
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I set goals for riding my trike, so I joined Special Olympics in Wyoming and won a silver medal in the 1,000 meters at our state competition. Last summer my goal was to ride to our local general store for a latte (good motivation!); it was 2.5 miles of dirt road, hills, and some pavement and traffic. I made it, no problem, and enjoyed drinking my latte on the patio of the Etna Trading Company, my brother-in-law’s small business. As of today, I have ridden over 200 miles on my trike in rain, snow, wind, and sunshine!

Whenever I would ride The Scorpion, I longed for others in my situation to experience how great it feels to ride a trike. I decided to start a charity and do projects to raise money to buy trikes for people who can’t afford one. I want to raise enough money to donate 5 trikes to others with brain injury. I am happy to say that this summer, I will donate my first trike to someone who had a stroke and has mobility challenges like mine. Doing these projects fills me with a sense of purpose, and it gives me a reason to get out of bed each day, even when my body hurts so much and my brain feels foggy. I know my life can still make a difference for others, and I feel God has a purpose and a future for me.

Gary riding his trike on a trail through the prairie.
Gary riding his trike on a trail through the prairie.

Being physically active is extremely important after a brain injury, and it helps me develop my coordination, strength, and attention skills. But most importantly, it’s fun and helps me feel healthy and positive. I get to be outdoors in the fresh air, and share time with the people I love, my family and friends who walk or ride alongside me. Someday, I hope to have a therapy dog named Turbo, and she can come on my rides, too.

Every day, I remember that even though everything changed after my brain injury, I still have lots of abilities, and I am still me! I love to help people overcome obstacles and have hope, so I am going to use all my abilities to do just that. Be The Mighty!

Gary enjoying a view of the mountains on his trike.
Gary enjoying a view of the mountains on his trike.

The Mighty is asking the following: What was one moment you received help in an unexpected or unorthodox way related to disability, disease or mental illness? Check out our Submit a Story page for more about our submission guidelines.

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7 Ways to Support a Loved One With Traumatic Brain Injury

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If someone you love is dealing with a traumatic brain injury (TBI), you may want to offer support, but not know how. As a survivor of TBI, these are my thoughts on how to support a friend or family member going through this difficult experience.

Understanding traumatic brain injury begins by thinking about basic things we take for granted each day. You probably take for granted that when you wake up, you will go to sleep that night as the same person you were when you began your day. You thought the same thoughts, had the same feelings, dreams, goals and abilities as you did the day before. You expect that the next day you will still look at yourself in the mirror and recognize your face, body and voice as yours. You know yourself. Whether or not you like yourself, you have full recognition of your body, mind and spirit. You may not be content or satisfied with who you’ve become, but you understand how you got that way, and you think about what you need to do to change, grow and progress.

Now, imagine waking up one day and within the course of your normal activities, a blow to the head removes all that. Imagine your sense of self disappearing like a document in your computer that you forgot to save. You remember it, mostly, kinda. You search for it; you know it’s there, somewhere, but no matter how hard you search, you just can’t find it. So you try to make a new one, as close to the old one as possible, but all the subtle nuances and specific details are gone. All you can do is try to make copy of the “you” that used to be.

You may feel like an impostor. You may feel like you’re living someone else’s life, but it’s your life. You’re lonely for yourself. You feel lost.

Things that were so important before may have no meaning. Relationships that you once treasured can be difficult to connect with. You understand the meaning of the lyrics in Gordon Lightfoot’s song, “If You Could Read My Mind” because you walk around like a ghost in your own life “with chains around your feet,” agonizing because “the feeling’s gone and you just can’t get it back.”

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Picture yourself getting into your car that only you drive, and suddenly, the seat is in the wrong position. You try the adjust it back to where you’ve always had it, but your most comfortable setting is gone. The steering wheel won’t tilt into place, and the HVAC system no longer has your temperature of choice. The radio has been reprogrammed without any station you recognize. The wipers stick and squeak. The defrost only works on one side of the window. The gas tank is on the other side. You try to drive it anyway, but no matter how hard you try, you just can’t get the speed up. You can’t see, your back hurts, it’s too cold/hot, the music is too loud, the wipers are driving you crazy, and you are so frustrated by everyone honking at you that you just pull over, put your head in your hands and cry.

Now imagine that car is your brain. That’s TBI.

7 Ways to Support a Loved One With Traumatic Brain Injury

1. Believe them. The pain is real. The fatigue is real. The confusion and mood changes aren’t their fault. It’s an injury. Treat it that way. Talk about depression and suicidal thoughts and feelings. I started a Facebook page that contains articles about TBI depression and other mental health issues.

2. Rehabilitation is vital. And it’s not all the same. Get your loved one into the best program you can find as soon as possible. If you’re in the USA, the Brain Injury Association of America has many resources on their website. It’s easy to get overwhelmed. Have your friends and family look for resources and do research for you. My friend Trina Chambers-Bradlee and I started a page to help others find financial help because I had a difficult time finding resources.

3. Not all concussion doctors are equal. Regardless of their status in the medical community, if you feel that the care is unsatisfactory for your situation, find another doctor.

4. An anti-inflammatory diet may be crucial. Fish oil shows evidence of being extremely helpful after brain injury. J.J. Virgin wrote a an e-book about her son’s recovery called “Walking Hope” in which she outlines how they used fish oil in his care. There are many functional medicine doctors and books online with more information about diet.

5. Join support groups. Whether they are in your rehabilitation center, online or at the hospital, support groups are vital to understanding TBI. Don’t try to get through this alone. Support groups will help you deal with all the things that the doctor doesn’t know or doesn’t have time to tell you.

6. Don’t give up. The more tools you put in your toolbox, the better you’ll be able to handle what’s happened. The more help you get for yourself, the more you’ll be able to help your loved one.

7. This is a life-changing event. However, there is life after TBI. The more you understand that you now have to put in extra effort for your loved one, the more enrichment you’ll both receive. Learning about TBI and experiencing it is like learning a new language for both of you. Think of yourselves as if you have suddenly been thrust into a new, strange country. The more you learn and adapt, the more opportunities you’ll have to rebuild a successful life together.

Editor’s note: This is based on one person’s experiences and should not be taken as medical advice. Consult a doctor or medical professional for any questions or concerns you have.

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The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

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