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I'm Done Apologizing for My Brain Injury

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In a typical day, there are two words I utter more frequently than any others: “I’m sorry.” Sorry I’m taking so long, sorry I need help, sorry I’m an inconvenience. I have hemiparesis with muscle spasms from a brain injury. It’s not noticeable to most people, but fine motor tasks are extremely difficult for me.

A few days ago I went to get fingerprinted for my new job. The technician said to start with my right thumb and press all of my fingers onto the scanner. When I didn’t move quickly enough, she repeated the instructions. I could tell she was getting irritated when she started to tell me for a third time, and I was too flustered to say anything but “Stop.” Breathe. Breathe. I explained briefly that it was hard for me, and told her how she could help. After awkwardly finishing the prints, the tech asked how I got the muscle problems, and I told her. She tried to make chit-chat.

This exchange is basically my nightmare, and I get to experience it on a regular basis. People get irritated when I don’t move as quickly as they think I should, or have trouble with a seemingly easy task, or forget things within seconds. Usually I am able to laugh it off before the situation gets (too) awkward. Regardless of the outcome, it always elicits varying degrees of the same response in me: panic. What amounts to an awkward 15 minutes for others is a constant sense of dread for me.

Is it my responsibility to notify people of the possible inconveniences caused by my invisible disability? Is the burden on me to make others feel less awkward? The more I think about it, the more I realize I deserve convenience as much as anyone else. I deserve patience and understanding. I live this life every single day, limitations and all. If it irritates you to wait five minutes, imagine my life. I have to wait on myself every minute of every day.

If the situation were reversed, how would I behave? I like to think that I would be patient and kind. If someone else needed accommodations, would I advocate for them? Of course I would. So why do I have such a hard time advocating for myself?

From now on, I’m going to challenge myself to stop apologizing. I will advocate for myself and treat myself with the same respect that I reserve for others. My disorder is invisible, but I’m not. #noapologies #spooniechallenge

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The 'Accidental Masterpieces' in My Life After a Brain Injury

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For much of 2007, my existence may best be characterized as lost. I had lost weight, hair, part of my skull, much muscular movement and fluidity, and my mobility. I had lost my memory, my history, my savings, my sense of security, and my identity. I had lost my mind.

Backing up…. In May of 2007, I was vacationing in San Francisco with my good friend Anna. We were exiting a café and for some unknown reason, I shot ahead on my travel scooter and fell off the high curb of the sidewalk into the street. According to Anna, I was not obviously drunk, sick, excessively tired, or otherwise impaired before this. It was unexplainable. I hit my head, began to bleed, and an ambulance was called.

This was all told to me later, as I have no recollection of the accident, any of the trip, nor even planning it. I have blocked the whole experience out. I have blocked a lot of experiences out.

Even as my memory congeals, much of my life takes place in stories and photographs, but not in the sensations of being there. I don’t have any flashbacks of being in the San Francisco hospital for 6 weeks after part of my skull was removed to allow for swelling, much of the time in a coma, and I recall very little of my time spent in a rehab hospital in Columbus, OH (where I grew up and my family lives). I only remember grueling therapy sessions there and one kind nurse, who let me have the whole container of chocolate pudding that was used to help me swallow medications.

I moved in with my mother at the end of the summer, in a place she had rented, but that I thought was her home I didn’t remember. Slowly, my strength and endurance came back. I exercised, read, wrote in a journal, drew in a sketchbook, and began to re-member – to put mind and body back together. Yet I was content to rarely leave my sanctuary.

In a couple months, I had surgery on my skull to reconstruct the amputation, after which, I had been told, I would improve drastically. Unfortunately, I had to endure a week in the hospital before I had the surgery, after an anesthesiologist punctured my lungs trying to put an IV in my chest. But I digress. I did feel better after my skull was intact, and in just a few weeks, I began teaching an online class, one of the three I was supposed to be teaching full time that fall. My knowledge of art history, the humanities, and how to teach came right back and, likely grew stronger. I was able to concentrate and exert authority more and more over time.

I soon moved back to my home in North Carolina and to my boyfriend, whose name I could now remember. As 2008 progressed, so did I, and I was determined to no longer put anything off. I proposed to the man I love and got married, taught full time, and began to write scholarly articles and to paint again. But I was still lost.

Backing up further…. As a congenital amputee, I have been physically disabled since birth. I was born asymmetrical, as my right extremities are longer than my left; my right arm ends with a pointy tip, which serves as my hand, and my left arm ends just below the elbow with a soft, tiny finger known officially as a “residual limb.” My right leg ends below the knee with another residual limb I have called my “tickle” since I was a child, and my left leg is a few inches long and appears like a ball with a large dimple at the end.

Indoors, I crawl or move around on the floor in a seated position, in an act I call my “butt scoot,” and I use prosthetic legs and crutches to walk some. I learned long ago how to manipulate my hands and legs with numerous adaptations, such that I can do almost whatever I want to do with practice, innovation, and the right resources. I have also incorporated disability studies as a discipline, as well as my identity as a disabled woman, into my teaching and writing. I was/am independent(ish) and damn proud of it. I have traveled internationally, lived in 3 cities, and gotten my PhD. I was, for better or worse, fearless. Now I will feel anxious taking my scooter to the grocery store one day, without worry about anything specific happening, while the next day I will relish riding my scooter or bicycle on the neighborhood trail.

The anxiety about injury lessens over time. The anxiety over being lost and having lost control are still, and may always be, unbearable. I can’t sleep through the night without taking pills, my moods fluctuate from high to low without warning, and I can’t remember certain people, places, and personal things. I sometimes have to laugh as, for example, I realize that not everyone looks oddly familiar because I have forgotten them, but because people just look alike. I can laugh at my loss at times, while at other times I am consumed by feelings of emptiness and the desire to know what happened and why.

The hardest lesson to learn is that my personal history will never, and could never be contained by a linear narrative. I have discovered countless things from this specific accident about myself and the world I live in. But the main thing I have learned is that “lost” and “found” are not absolutes. They are states of being, always in flux. They collide, overlap, and intertwine. Sometimes, they make it a chore to get up in the morning. And sometimes, they produce accidental masterpieces.

This is an excerpt from Ann Millett-Gallant’s memoir “Re-Membering.”

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When People See How Well I Snowboard After My Brain Injury

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I don’t know why I snowboard better than I walk, but I do.

This picture was taken at The Hartford’s Ski Spectacular in Breckenridge, Colorado last November 2016. Disabled Sports USA helped me fly out there to race train with the National snowboard team (Paralympic snowboarders) and at the end of the week, there was a Diana Golden race where we competed against each other and put everything we learned that week into action.

It is my second season back on my snowboard and I have been wanting to do more and more. That can happen with brain injuries like the one I had. The doctors tell your family that you will probably won’t be able to function the way you used to, both physically and cognitively, and then once you start breaking barriers and proving doctors wrong, you may start thinking you can conquer the world — even though you can’t. It starts with the first step you take after your TBI. That’s a big accomplishment — and boom — you may feel like you can conquer the world.

A lot of people see me on my snowboard and they don’t realize I am disabled. I snowboard like any other snowboarder, although I do have some adaptions on my board to help out and I have to move my body differently than an able-bodied person to be able to maneuver my board.

People notice after I get off my board that I have ataxia and I lose my balance or fall for no apparent reason. Well, the reason is that my brain can’t tell where my body is in space. From there, I don’t know the whole reason why I lose my balance or fall, but the only reason I can think of is because then my brain knows where it is for sure — on the ground!

It can be frustrating when people say “You can snowboard, why can’t you do [insert activity here]?” That is a hard question to answer because I seriously don’t have a real answer to why. I just can’t coordinate my body to do certain things. Either my muscle tone acts up or I just can’t figure out how to tell my limbs what to do when I want them to. People don’t get this. It’s very frustrating. It’s not like I don’t want to be able to do certain things, it’s that I just haven’t figured out how to do it.

The people who see this picture don’t see the struggle and training it took to get here. They don’t see all the gnarly falls I’ve taken, the bruises, the frustration. They didn’t see the days after my injury when I was unaware of my surroundings and unable to speak. They don’t see my training days in the gym where I continue to push the boundaries.

I believe I exceed expectations because the words “no” and “can’t” are not in my vocabulary.

Follow Courtney on Instagram.

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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.

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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Thinkstock photo by Pecaphoto77.

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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.

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.

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.

Lead photo source: Thinkstock Images

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