My Concussion Story: The Loneliness and Fear of Not Getting Better

In November 2014, I fell off a horse in a routine training ride at 25 years of age. Everything was going smoothly until my trusty mount, an 18-hand high (very big) black powerhouse gelding with a Conor McGregor-sized personality, decided to test his skills as a bronco after hearing lunch grain being distributed in the barn. I later learned that this was a quirk of his – he really didn’t like to miss lunch. I could feel his muscles tense as the grain hit the buckets in the barn half an arena away from us. He was deciding whether to knock me off or to let me stay on. It was comical at first, and I giggled to myself until I realized that he had some very serious athletic skills and I’d likely end up splattered on the wall or rocketing to the ground with force. He whipped me to and fro like a ragdoll before the latter proved true. I’m proud to say I made the eight-second mark, but it wasn’t much longer before I was launched out of the saddle and over his right shoulder. I landed on the back of my head with the edge of my helmet digging into my skull.

I was concussed instantly. I bounced up, though, as riders are conditioned to do, but I couldn’t shake the fogginess or the heaviness in my limbs. I was taught to always get back on the horse, so that’s exactly what I did. It didn’t even dawn on me to consider getting checked out first.

As a competitive horseback rider who has had her share of falls, along with some bad luck in cars, I should have known that things weren’t looking good for me when I couldn’t remember jumping a course mere seconds after completing it. I should have known something was wrong when I started processing things in a kind of slow motion, or when I noticed my head felt heavy and big enough to be a bobble head. I should have dismounted when I noticed that I felt wobbly and unbalanced, or when it became evident that none of my limbs could work together like they had before. It was like my body had forgotten how to ride. The motions that had been second nature to me for so many years had been knocked out of me when I hit the ground.

There were a lot of signs that something was wrong but I couldn’t comprehend the seriousness of any of them, and I vehemently shushed any concern from the coach. I was the tough girl, the girl that always got back on, and I wanted to stay that way. I finished my ride, tucked the horse in for the night, drove myself home and soaked in an Epsom salt bath with a glass of red wine, naively hoping I’d wake up as good as new and ready to ride again. I think, though, a part of me deep down knew this one would be different.

The problem was that my experience with concussions happened mostly before there was any real treatment for them, and before it was really talked about in my sport. It was just something that happened. Sometimes, people would act differently for years after hitting their heads and sometimes they’d be back to themselves in a day or two. It was just one of those things. So, while I knew the symptoms, I had no idea how to look after myself.

The next afternoon, I was driving on the highway and couldn’t believe how fast everyone around me seemed to be travelling. I was getting passed on each side, and people were honking and angrily waving their hands as they drove by. I couldn’t understand it. I felt like I was going normal speed – 100km/hour (the speed limit), so it didn’t make sense to me. My car didn’t seem to be pulling so it wasn’t a flat. Then I looked at the dashboard – I was going 50km/hour. That’s when I knew something was wrong. I drove straight to see my brother. By the time I got there, my left eye had, unbeknownst to me, started to wander and was looking to the top left and had a blown pupil. And, to top it off, the point of impact at the base of my skull had become hot and swollen. As soon as he saw me, my brother took my keys and drove me to the nearest emergency room which, luckily, was in a top brain injury hospital in my city.

Once we arrived and spoke to the nurse, I was ushered right in to see the doctor to go through the various concussion tests. By the time I saw the doctor, which wasn’t very long after, it was getting a lot harder to walk or stand upright, and my right leg and hand had altered sensations with a streak of tingling numbness starting in each. I could no longer see any of the letters on the eye test chart except for the very top one – an ‘A’. I also found it increasingly difficult to speak to the doctor because I couldn’t understand what he was saying, even though it was plain English and I knew it was English. I ended up looking blankly at my brother for help in answering his questions. My balance was way off and my neck was stiff and I couldn’t look over my shoulder. I was confused, exhausted, and my head hurt, and the fluorescent lights felt like they were setting my eyeballs on fire. But, I was lucky and the CT scan showed that didn’t have a bleed – so I was sent home to sit in a dark room for 48 hours until I could see a concussion specialist at a sports medicine clinic.

48 hours turned into a week, which turned into two weeks, which turned into a month… Eventually I had spent most of the next three months in a dark room only being allowed to see immediate family. I couldn’t move or workout, I couldn’t read a book, I couldn’t listen to music or audiobooks…. I couldn’t even sit up without getting dizzy or symptomatic a lot of the time. I had a Dora the Explorer colouring book with big fat crayons that my clumsy fingers could grip, and I was allowed to colour for 15 minutes, twice a day, for entertainment… Sometimes I didn’t even have the energy to do that. I wore earplugs and sunglasses 24/7, even in the middle of the night, and the world still felt like it was bombarding my senses. And, to top it all off, my concussion doctor couldn’t tell me if I’d get better or how much better I’d get. He (along with many other well-intentioned people) also directed me to literature that taught me about how concussions have been linked to all sorts of disorders later in life, including Chronic Traumatic Encephalopathy (CTE), Alzheimer’s, dementia, ALS, and Parkinson’s. Since I couldn’t read this information on my own, I learned about the many dangers of brain injuries along with my family who I could see were just as concerned as I was. It was a (literally) dark and scary time.

From there, I progressed to short phone conversations with friends, and maybe a short visit on a really good day. Any sort of interaction would leave me mentally and physically exhausted, and I’d usually sleep for hours afterward. Yet, still there were people who’d look at me (or talk to me) and say, “You don’t seem that bad! I was expecting worse.”

Cue the frustrated eye roll.

Well, I was bad. I was really, really bad. The problem is, brain injuries are invisible. They don’t come with a sling or a brace or a cast. They don’t have a timeline for mending. They are invisible and they are unique to every individual and every experience. With science and professional sports just starting to catch up, there isn’t much hope for the everyday person to understand. And I get that. The reality of it just wasn’t something I was prepared for. Of course, some people are naturally empathetic and understanding, but most struggle to understand what it is you’re going through so they eventually stop trying. After the initial accident, or sometime thereafter, they’ll give up and expect you to be back to your old self. I found that, as I explored more and more of the world and what my brain would let me do, the more some people expected me to be my old self – ready to go at any time. That just wasn’t the case, so I ended up letting them down. As a result, I learned just how lonely brain injuries can be and I empathize with every single person who has had to find that out.

After my fall in 2014, my personality changed. I cried a lot. I was jealous of the world going on around me. I started having panic attacks. I could be happy and content one second and in heaving sobs the next. I was wildly irrational but I couldn’t control it. For example, I once became overwhelmed with sadness and broke into a fit of uncontrollable crying when, several months into recovery, someone handed me a pen instead of the pencil I had asked for. I was some strange shadow of my previous self, explosive and short-fused and insecure. I couldn’t be in a room with more than one other person because my mind literally could not distinguish between multiple voices or words being spoken at the same time – the TV or radio included – and that terrified me. My head ached. My body ached. Walking was a struggle. Thinking was even harder. A writer, I pride myself on my capacity for words and articulating thoughts but I’d mix up even the simplest of words and forget others entirely.

This went on for a year and a half.

I got better over time, sometimes plateauing and sometimes making big gains, and then sometimes regressing. I guess that’s just how healing goes. I’m a lot better now, though, and am back to living a full life. But, to this day, I can’t handle being in a crowded room. Sometimes it will start to look like a fishbowl because my eyes can’t adjust so I feel like I’m in some wonky house of mirrors when, really, it’s just a normal room. Sometimes I’ll stop being able to understand what people are saying to me. Other times I’ll get lucky and it’ll just be uncomfortable for my senses. Regardless, I’ll have a “hangover” for at least 48 hours just from the noise and strain of taking it all in. Unless circumstances are perfect (i.e., I’m relaxed and in a quiet place) I can’t drink. Any hangover I get now is usually from overdoing it. I still get migraines. It’s three years later and I still struggle with anxiety and mood swings that I didn’t have before. I still can’t workout like I used to, and I’ve been on a horse all of three times. The back of a horse is where I sorted out my life. It’s how I coped with stress. It’s where I nourished my soul. Now it’s a hit or miss of whether it’ll set off my symptoms or whether it’ll make me cry with joy, and I’ve had to work on re-training my body each time because the limbs still don’t work together like they used to. I’m back at work and starting to get back on track financially, but some days I still come home with a pressure headache so strong all I can do is lie down in the dark. I don’t know what restaurants are good, I don’t know where people go for drinks, I don’t know when things are going on in my city… I used to know all of these things but I don’t anymore because I can’t do them. Now I know the health food stores, the massage therapists, the osteopaths, the naturopaths, the shamans, and the meditation centres because that’s where I spend my time and money.

But, that’s the side of concussions you’ve heard about – the missing out, the pain, the change in personality. And, I’ll be the first to tell you that, while it was a bad concussion, it could have been a million times worse. I’m lucky. I have incredibly supportive parents who took care of me the entire time I was recovering. They cooked for me, took my dog out, even checked my emails for me when I couldn’t. My recently rescued nervous street dog seemed to know I needed some love so he snuggled me all day and all night. All of them kept me smiling, which was paramount to seeing the positives in my situation. I think seeing the good helps you heal, gives you that sense of purpose and calm, and keeps you out of the dark place. It took me a while but I found the positive, the silver lining to my brain injury – I was forced to get to know and be good to myself.

I used to worry that I’d never be the same person I was before the accident. Now I hope I never am. Not that I don’t like who I was, but I was a young kid looking to find her place in the world. Sometimes, a lot of the time, that meant adjusting who I was to fit what other people wanted me to be. I didn’t really know who I was. I’m guilty of doing exactly what so many other young people do – giving up parts of themselves just to feel like they “belong”. With a brain injury, I couldn’t do that anymore. I had to be me all the time, flawed and broken and imperfect. My brain couldn’t handle being anyone else.

As time went by, I started to see who would stick by me when I was just being me, through the mood swings and boring nights in, the cry fests and the quiet spells. I saw who was still waiting for me at the end of my three-month hiatus, and who asked for updates on my progress. I noticed who still liked to hang out with me when I couldn’t do the things they wanted to do. Because I was being me – I was doing what I wanted to do and what I could do – I wasn’t compromising myself anymore and I started seeing what was real in my life.

I also started to learn about the things that mattered most to me. I didn’t, and still don’t, have a lot of capacity for activities. I need a lot of down time to rest and recuperate. To make sure that I can still do the things I want to do and see the people I want to see, while still moving forward with work and other aspects of life, I’m very selective with my schedule and have learned to prioritize, and I have had to set myself up to do the things I need to do to help me get better.

And, most importantly, this concussion taught me how to say “no”. I never used to like to say the word because I always felt like I’d be letting someone down. I liked to be the one always game. Now I have no choice but to decline. And I can’t feel bad about it because it’s for my health. At first, I felt like the whole thing was a burden, the symptoms a scary chain with no key associated with a brain injury. I’d become the “no” girl, always bailing on plans and missing out. But it’s not. It’s part of growing up. You can’t say “yes” to everybody, nor should you. Sometimes other things will take precedence, sometimes you won’t make it out, and sometimes you’ll just need a night to stay in and eat a fat burrito before going to bed at 8:30pm. And, for me, sometimes I need to do what I need to do to keep myself feeling good. At some point in life, I was going to have to grow up and learn that. I’m happy it was sooner than later because it’s saving me a lot of stress for the future while also helping me heal now.

I’ve never been a big bar person, though that seemed to be something I did for a while. I like sleep and I like mornings. I like to work out, I like to be outdoors, and I like to write. I like to have good friends I can be myself with, but I don’t enjoy friends that make it feel like work. I love to support my friends, but I don’t want to lose myself in trying to please them.

These ideas seem simple, but it took this concussion for me to realize all of them.

I’m still looking for my place in this big, amazing world of ours, but now I’m on a path to find the right place for me and not some place that others expect to find me. Even with all the ups and downs in my mental and physical health, relationships, jobs, fitness, and prognosis, this concussion has been a gift in disguise. It’s given me the time to pause and reflect on the present and the future, forced me to prioritize my life, and given me the strength to start saying “no”. And it’s taught me how to look after myself. I want to give myself the best possible chance to live a long, happy, and healthy life. I want to do everything I can to help my brain heal. My health comes first so I can’t be living based on what others want or think. It’s not their brain and it’s not their future. It’s mine.

And, as though the universe wanted to prove to me that I was on the right track, this concussion gave me the push to write my first book (which is now in circulation) and led me to make the smartest emotional decision I’ve yet to make – to take a chance and go out with someone unlike anyone I’d dated before. I ended up falling in love with the person who is now my best friend.

I may still be a bit broken and I may still be missing out on things, but I’m happier now than I have been in a long time. As terrible and destructive as concussions are, and aside from how much I still worry about what the future might hold, I needed to learn how to let myself be happy. I needed to learn to take care of myself. And, evidently, this is what the universe thought it would take.

#health #concussion #reallife

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