My name is Rachel, I am almost 22 years old, and I appear to be perfectly healthy. But, I have permanent brain damage. When I say “appear”, I mean that I’d like to consider myself a wonderful actor, who goes about her day without letting on that she’s struggling. Although, I am struggling. Additionally, it takes a highly-trained physician with expertise in traumatic head injuries to recognize what the problem is. However, to myself and anyone who knows the story, this is simple: I have what’s called a “chronic concussion”. This means that after sustaining several concussions, or one really bad one, your brain is unable to heal itself and your symptoms will persist. The reason a skilled physician is needed is because even today’s technology has difficulty pinpointing concussions, as scans and MRIs will usually come up clean. For those who are unaware, a concussion occurs when there is a traumatic blow to the head where the brain hits the skull. One of my neurologists at St. Michael’s hospital in Toronto, explained it to me like this: when concussed, your brain is basically a bruise and when the bruise heals, so should your symptoms. But, for whatever reason, when you have a chronic concussion, which is more likely to happen the more concussions you sustain, the bruise will heal, but your brain doesn’t recognize this and still thinks the bruise is there, so your symptoms will stay with you.
Unfortunately, while many scientific advances have been made in recent years pertaining to brain injuries, we still don’t know why this happens or how to stop it. What’s assumed by some medical professionals that have great expertise in head injuries, is that during the healing process, when the injury is more strenuous and timely to heal, the brain looks for different paths and channels to heal itself. When different paths are taken to heal the “bruise”, other paths become disrupted, causing a plethora of side effects. So, in many cases, medical professionals will look towards Cognitive Behavioral Therapy (CBT) as a means of trying to refocus and restore the brain’s channels, as well as teaching patients how to cope with their symptoms. Sometimes this will work, and it is basically the closest explanation we have at the moment for chronic concussions. But as someone who has tried CBT with countless different professionals, and with it always failing, I can tell you that this explanation is not completely sound.
Allow me to explain my personal experience. I sustained my first concussion when I was three. I was innocently playing with my brother and I got hurt. Completely normal, and I recovered from it with no problems. The thing about concussions that makes them so scary is how volatile they are. As I mentioned before, once you sustain your first, it becomes that much easier to have your next. My brain is now so accustomed to concussions, that I don’t even need to hit my head anymore to become re-concussed. All it takes is a shake of the head, and I’ll have a brand-new concussion. One thing you should know about me is that from the time I was 6 years old, I was a high performance artistic gymnast competing for the province of Ontario, and later competing Nationally in Canada. I competed in trampoline, along with artistic gymnastics. At one point, training 31 hours per week, I was very prone to injuries, as my body was working so hard. Throughout the years, I sustained several injuries and have made countless trips to the surgeon, but the one thing they could never fix was my brain. That was the unfixable.
The thing about the brain is that it is so complex, science is making new discoveries each and every day about it, but scientists still don't fully understand just how it functions and responds to certain things. After 8 concussions, you would think my brain would know how to react, and my body would adjust somehow but that's just the thing - it doesn't, and each concussion has come with its own set of drama completely unique. I’ve had several concussions, all making it easier to have more, but there was one major concussion that stood out from the rest that began my chronic concussion. The reason not only has to do with the amount of blunt force to my head, which was disastrous, but also the location of where the contact was made. This concussion was sustained with blunt trauma to the back of my head, a much rarer location, as concussions usually occur to the front or side of the head. Since this was to the back of my head, this has created more difficulties. The reason is because there is less communication happening, because it takes much longer for the back to receive signals sent from the front or side. From my experience, I have always been warned to be careful not to hit my head too hard because of the dangers of concussions, but I was never really told what that meant. From my personal experience, here are the things they don’t warn you about.
They don’t tell you how much not only your head will hurt, but your entire body. This may seem like a no brainer (pun intended) because when you sustain a concussion, your brain literally just smacked into your skull. But depending on the severity of your concussion, this pain is like no other. For the record, I have a high pain tolerance, having undergone two knee surgeries and opting to forgo pain medication after the first day for the most part. But the pain I experience on a regular basis due to my chronic concussion is like nothing I have ever felt in my entire life. It is crippling, and absolutely excruciating and there is nothing I can do about it. I’m allergic to NSAIDS (Non Steroidal Anti Inflammatory Drugs), and that makes matters so much worse. That means I am unable to take Advil (Ibuprofen), Aspirin (ASA), Aleve (Naproxen), and basically anything else that may help me. Prescription pain medication is not much of an option due to the frequency of the pain I experience. I tend to experience this sort of pain daily, sometimes more than once a day and it lasts for hours, if not more. So, you learn to endure the pain because taking prescribed pain medication daily is not healthy.
However, sometimes this is the only option. When I say this is the only option, this is exactly what I mean, because like I mentioned before, I am someone who avoids taking these drugs at all costs having forgone them after knee surgery. Sometimes the pain is so severe though, and I find myself trapped in a dark room, hugging my knees into my chest, while digging my nails into the ground with tears streaming down my face. I can’t move. I can’t breathe. I can’t think. It hurts so much you couldn’t imagine. The best I can explain the pain is like this: imagine a sheet of rubber with a tiny pin prick. Now imagine shoving a watermelon through that pinhole in the rubber. The watermelon is your head. It comes at you from all angles. It feels like this massive amount of pressure squeezing your head. It also comes in the form of daggers in the back of your head. Sometimes its icy, sometimes it burns. Sometimes it moves around a bit. And almost always, it will get in the way of everything and anything in your life. It can creep up on you and attack you full-force at any time. They don’t tell you that you’re going to wake up in the middle of the night with pain everywhere, and after years, I still have not been able to pinpoint any specific triggers. Also, since your brain sends out signals to the rest of your body, your head won’t be the only place you have pain. You’ll get severe back pain at times, neck pain, and joint pain. Tiger balm will become your best friend.
You’re usually warned about photosensitivity, but what they don’t tell you is just how much that will affect your everyday life. They don’t tell you that you’ll be unable to take your finals in school or even study because looking at the white paper will give you a migraine within less than 30 seconds. So now, you’ll need to obtain documentation from your physician vouching for this, and your professors will have to print all of your course materials on colored paper. Although this still won’t be enough, and you’ll have to wear sunglasses on top of this in order to take tests. They also don’t tell you that you will need to wear sunglasses at all times when you drive, even at night. (Of course avoiding un-lit areas that will cause the road to appear pitch-black with sunglasses). You’ll need to wear sunglasses when driving because the headlights from other cars will be painful for you to look at and will give you a migraine. You’ll be unable to take the window seat on an airplane. Forget going to a rave. Glow sticks = big mistake. Do you like looking at the stars? You probably don’t anymore. Also, make sure you have polarized sunglasses if you’re going swimming in the summer. Did your friend find something funny on their phone they’d like to show you? Better make sure the brightness is dimmed all the way to the very last notch.
They don’t tell you that now you’ll have daily bouts of anxiety that will creep up on you at any time, and panic attacks out of nowhere. They don’t tell you that nobody will understand. Nobody will know how to make it better for you. Nobody will understand why you’re irritable that day for ‘no reason’. Nobody will understand why you’re sitting up awake at night with your body physically shaking, as you get nauseous and over analyze your entire day without knowing why you’re doing it and unable to ground yourself and stop. They don’t tell you about the mood swings you’ll have when you have a migraine, with anything able to set you off.
They don’t tell you that you’ll not only have horrible insomnia but it will take a minimum of 2 hours to fall asleep every night. And that you’ll wake up every few hours throughout the night, tossing and turning and won’t be able to remember the last time you had a restful sleep. You’ll need 9-10 hours of sleep every night to feel ‘normal’ as opposed to the typical 7-8 hours most people require. You will also have trouble waking up every time you sleep, no matter how long you’ve slept for, even if it is just a quick nap in the afternoon. Sleep paralysis will also be common.
Do you like to go out with your friends? Having a casual glass of wine at home? You probably don’t love it so much anymore. One glass will be enough to get you incredibly intoxicated, and you’ll be feeling that single glass for the next three days as you try to recuperate. You heard me – three days.
In addition to the lights from cars on the road and stoplights, driving a car is going to do much more damage. They don’t tell you that if you get stuck in traffic, that the “starting and stopping” of the car is going to make you so nauseous that you’ll need to pull the car over to vomit. They don’t tell you that this can happen within a matter of minutes driving, without warning. Some days you will be fine, and other days you will get in your car and you just won’t be able to do it.
Do you like sports? Too bad you can’t participate in them anymore. Not only will you get horrible headaches, but you’ll become nauseous, weak and you may even faint. I’m pretty stubborn, so for the longest time I tried anyway, and still do from time to time. But, there are several dangers associated with not only sports, but engaging in any sort of exertion, including going to the gym and working out. You’ll need to be extremely careful not to overwork your body because your brain won’t be able to take it. If by chance you do overwork your brain, not only do you run the risk of further damage and becoming re-concussed, you will be in pain for days and possibly weeks afterwards. Consider it like a theoretical hangover for your head, minus the alcohol. If you go overboard, which depending on your condition, could mean running up one single flight of stairs, you can expect to pay for it.
Are you a student? Do you have plans to further your education in anyway? Or perhaps, maybe your job requires you to do research. Well, this just became a lot more difficult for you. Studying requires concentration, which means your brain needs to focus and work hard. Since your brain is inured, this becomes extremely difficult and will not only slow the healing process because your brain does not have time to heal, but several symptoms will begin to pop up. Migraines are especially common. You’ll need to take frequent breaks, and when I say frequent I mean that after 20 minutes, you’ll need at least 30 minutes to rest.
Concussions are seriously no joke. This list is only the tip of the iceberg. Concussions will have a major effect on your life. Concussions are not to be taken lightly and people don’t always understand just how debilitating they actually are, and how much they can change your life for the worse. I hope this gave some insight into what life is like with a chronic concussion, and I truly hope that if more awareness is brought to what thousands of people go through, more time will be put towards finding some answers.