Noggins To Noggins: Mackenzie's Year With PCS

By Mackenzie Stone

It's an invisible injury, something that's really not there, just a trick of the mind. That's what you might have heard. But lately, more recently, you might have been told that it's real. All those invisible injuries, the fake ones, they've been proving to really be there. So what is it like to live with an invisible injury? I'm sure some of you know the feeling. Hiding what is going on under the surface because it is impossible to explain, because it is impossible for other people to understand. These invisible injuries are far from fake, but they are far from being understood. I have had an entire year of experience with an invisible injury, I can't say it was the most fun thing I have ever dealt with. I had a concussion for a year last year. 

I didn't realize how much I didn't like looking back on my concussion until I started writing this, but I want this to help people. I want people to understand what it's like to have a concussion, not just what it is. Maybe this will help someone understand what a teammate, a friend, or family member is going through. Maybe this will help someone that has a concussion know that they are not alone and that one day, they will beat this. Maybe this will raise more awareness about concussions. Either way, I hope that despite what I had to go through, this helps someone, some way, some how. 

It all started October 2, 2015. It was the first game of the year, I was on the half wall on the power play and I faked a pass back to the point before cutting back sharply. That’s when my head got body checked and I dropped. After the game, people would tell me that it looked bad, really bad. That I dropped like a sac of potatoes. My trainer would tell me later that when she crouched down next to me on the ice, I said “I just got rocked.” But all I remember was that my sock was pushed half way down my shin pad and my leg was cold from the ice. I remember saying that I was fine to play the last 5 minutes, that I just felt a little out of it. I remember being told to undress. I remember doing memory and balance tests. And then, 30 minutes later I remember my first headache. The headache that would last me a year, little to my knowledge at the time. It hit me all at once, shooting pains through my head, aching across my forehead and all the while my head felt like someone had tried to inflate it with air. 

I have a high pain tolerance for headaches because I have always had them growing up. Perks of not knowing you’re gluten intolerant until you’re 19. But since I was so used to headaches I brushed it off a first. I really thought it would be gone in a week. I stayed out of most of my classes and away from hockey the first week. I stayed in a dark room. And then it was another week and another. It felt like someone had physically removed me from my own life. Like I was a petal that someone plucked and left drifting in the wind. I went from a full day of classes, practice, seeing my teammates, making meals, working or volunteering and doing homework all in one day to maybe going to a class or two. I remember trying to write a one page paper review that would normally take me less than an hour take me an entire day. I remember holding back my nausea when I would drive the 5 minute distance to school. I remember feeling like the projector screens were going to burn holes in the back of my eyes. And I remember dreading having to read labels and look through items at the grocery store because I would feel so dizzy. All the while I remember the sharp pains shooting across my forehead and the ever increasing pressure pushing against my skull.

Three months later I was getting impatient. I was going to vision therapy, I still couldn’t play hockey, I still couldn’t do anything but go on the bike and I was still getting headaches. I remember starting to feel frustrated that I couldn’t play hockey, go to parties, even go on road trips, or participate in the life that I once took for granted. I remember starting to feel lonely but I still remained hopeful. Because it was only three months. People usually get better around three months., but I didn’t. So I stayed at home over intercession to see a specialist. It was helpful to be at home because I could make sure I didn’t try to push myself too hard to get better quicker. That’s the other thing. When you’re an athlete, you think the hardest thing in training is pushing yourself beyond your breaking point. Mentally forcing your body to work even when it feels like it weighs 500 pounds. It wasn’t until I got my concussion that I realized the hardest thing was not to push yourself. The hardest thing was to bike for 50 minutes without your heart rising above 80 beat/min. Yes that is a walking pace. The hardest thing was to think about all the training you put in for the season that you wont get to play in. Never knowing if you would feel normal again, let alone play. 

 It was around this point in my concussion that I was getting scared I wouldn’t get better. The worst part is; no one can tell you it will. Because no one actually knows. They can’t give you a time frame like any other injury. There’s just, “if you keep doing the right things for your brain, one day it will be better.” As a doctor, it’s easy to say, but when it’s your life? It not easy to hear. It feels endless. It makes you feel anxious, helpless and hopeless, but you can’t do anything about it so you just have to keep trying. At the end up of January I was doing better. Keep in mind though, that all I was doing was gradually progressing my work outs and maybe watching a half hour of TV a day or hanging out with a friend for an hour. Yup, that’s it. Concussions make you tired. Really, really tired. I would sleep for 15 hours every day. The rest of the time, everything hurt me so much I would just lie in a dark room. Trust me, it gets old fast.

At the start of February, I came back to school. The headaches came back full fledge right away. Classes were too much for my head. My doctors all told me to lower my class load but I was stubborn. I had my own agenda of graduating on time. I probably would have gotten better sooner if I did. Instead, my life revolved around surviving my days. I could only do so many things in my day without my head feeling like it would actually break. So I had to pick and choose what I did each day. I picked only the essentials, rehab and school. I would go to class, I would take hours on homework assignments because I had to take breaks every ten minutes my head hurt so badly. I would take naps. I would do rehab. I would go to bed early. And repeat. I was a zombie. I was starting to lose all sense of reality. I still couldn’t travel with my team so I was alone every weekend. It felt like my old life no longer existed. I almost couldn’t believe a time where I could even listen to music in my car higher than at one bar. 

I remember one weekend, my parents drove me to my teams playoff game in Penn State because I couldn’t be on the bus, or in restaurants, or have a scheduled day because my head would hurt so badly. I remember watching the game with the loud music in the rink. I remember throwing up because it was hard for my eyes to follow the game and the game horn was so damn loud. I remember moments like these scaring me not just because, well that’s just so beyond normal, but because I was scared they would set me back even more. That since it got so bad that day, I would have to live an extra week with a concussion.

When playoffs finished I was around 6 months deep into my concussion and it was getting scary. Dark rooms were really starting to wear me out at this point. I wanted to be able to have fun and go out with my teammates but my head hurt so badly it wasn’t even worth it. It was around this time that I started to feel like I was losing it, like actually going crazy, because it was at this point, that I forgot what it felt like to live a normal life. I remember I would tell myself I could only cry for ten minutes a day. I would set a timer. I was scared I wouldn’t stop if I didn’t. Sometimes, on really bad days I would let myself cry twice. Some nights when I couldn’t sleep because it felt like someone was hitting my head with a hammer, I would just drive. I would drive an hour away at 1 am and then when I felt a little better I would drive back. 

It was never that people weren’t there for me or tried to understand. It was that no one could really understand, even if they tried. It was in these months that I realized how truly alone I was. Medically, there was no cure. Emotionally, as much as people tried to make me feel better, they couldn’t. The only thing that would have made me feel better was to be better. Concussions don’t just sideline you from your sport, they sideline you from your life. They take your ability to live. I mean really, what can you do if you don’t have a brain? I couldn’t really work, I couldn’t really burry my head in school work, I couldn’t be around groups of people, I couldn’t be in loud or busy settings, heck I couldn’t even watch Netflix. You are just left alone, day in day out, sitting in a dark room with your thoughts and killer headaches. Your crazy, scary thoughts start to consume you and it’s hard not to think about how you don’t even know who you are anymore. If you will ever really be happy again.  If you will ever be a functional person in the world. I missed living. You start to realize that there is no reason to cry for help. That there really isn’t a point in crying because no one can really understand and no one can make you better. You start to accept the loneliness.

When school ended, things started looking up. I went home for the summer. I went to a vestibular therapist and they helped. I went to a concussion optometrist and they helped too. Turns out my whole perception was off, I saw the whole world a little too much to the left. I couldn’t even walk straight. I had to wear prism lenses. I wish someone could have told me that 9 months earlier. Over the course of summer without school, I started to feel better. I started ramping up to doing my teams work outs and I had my eyes set on getting cleared in the fall. 

Funny thing is, I did get cleared. I remember thinking that when I got cleared, this nightmare would be over. I would be like my old self again. I don’t know why I was so naive. Being back playing hockey again was amazing. Waking up without a headache was amazing. Reading a chapter of a book without a pounding headache was amazing. All of these little things we take for granted everyday, that’s what I loved the most about feeling better. Although all these things were amazing, I felt like I had stepped out of a time machine. Like a year of my life was fast-forwarded. I could play hockey again but I hadn’t touched the ice for a year. I was back with my team again but I missed a whole year of inside jokes. I missed a whole year of my life. I was in the same house, played the same sport, went to the same school but everything was different. I was different.

I wasn’t as carefree and I was structured. I was scared that if I started to do everything again I would get headaches. I was right. They came back a little, but they were tolerable. I could deal with tolerable. I couldn’t deal with another year in a dark room. Looking back at my years at RIT, it’s hard to say that I was really here for four. To me, my third year doesn’t even count. It’s hard to count it as existing because really, I think of my third year as a dark room. But just like any scar, they heal. Just like my head did, but scars, they stick with you. I would get panic attacks if my teammates went hard into the boards. Even if they were fine, the initial moment would send me into sheer panic. The last thing I would ever want for anyone was to go through what I went through. When I got cleared to play, I was scared too. I never got back to playing like I used to. Partially because I missed a whole year of hockey. Partially because I couldn’t get past my subconscious fear. The thing is, I didn’t want to get past it. I wasn’t scared of getting hit in the head and dying, I was scared of getting hit in the head and having to live with another concussion. Of having to watch everyone live their lives while I stayed in a dark room, counting down an undefined number of days until I would be better again. It sounds twisted, dark and morbid but it’s the truth. It’s my story. These are concussions. 

Even now, 7 months from when I got cleared, I can’t say I’m the same as I was before. Just being in the same place, the same school is a constant reminder of what I had to live with. I feel like I am living a never ending loop of my concussion. I have to use a special blue light screen on my laptop. If I do too much school work in a day, I will feel it. I can’t cram before tests or I will get a migraine. Maybe it will be better when I take time off school and really let my body rest but then again, no one can guarantee that for me. I can’t say that I personally will ever be the same person that I was before my concussion either. I’m still not sure if that’s a good or bad thing. I think it’s just different.

It’s easy to say my concussion wrecked a year of my life. In some ways it definitely did, but bad things happen. Bad things happen to people everywhere, all the time, whether they deserve it or not. It’s life. It happens. In all reality, life is just what we do with what we are given. My concussion sucked. No better word to describe it. And yes, it changed my life. But maybe, in some strange way, my concussion changed my life for the better. My concussion made me appreciate everything. It made me fall back in love with all the little things. The things we take for granted so regularly in our busy lives. My concussion forced me to see the world in a light that was so different from how I normally saw it. It forced me to see the truth behind some friendships. It made me recognize the amazing support system that I have. It showed me what was truly, at the most basic levels life, important to me. It allowed me to understand a situation that most people will not ever, despite their best efforts, fully understand.

I believe there's reasons for everything in life. Sometimes, it's harder to find meanings behind some reasons, but I do believe that if we want to look for them, we can find them. Maybe we don't have all the answers, but I think we need to find a way to make peace with them ourselves.