How to live with a constant headache for six years straight.
This isn’t a metaphor. Six years ago today, I was kicked by accident in the head playing basketball my senior year of high school. I know right. Kicked? Playing Basketball? What..? You are telling me.
I loved basketball. I played AAU and all that jazz. I took it extremely seriously. I loved competing, and making myself better. I was starting point guard for Bethel Park High School (shoutout to the Blackhawks), and I couldn’t wait for the playoffs.
I was always the athletic kid who could do anything. I remember making a triple play in softball at age 6 when no one else knew what was going on. In grade school I wasn’t afraid to be the only girl playing football with the guys at recess. I wore Rec Specs when competing in soccer, softball, and basketball. I was known as “the girl with the goggles”. I loved it.
When I was lacing up my high-tops that morning, on February 7th, 2009, a Saturday just like today, I had no idea, this athletic identity I had all my life, would be stripped away in a split second, precisely, in the next forty-five minutes. I remember everything. I didn’t black out. It was a simple, intense accident, going after a lose ball. I remember thinking. “Does my head hurt? Of course it does, I just took a right high top to my left temple. Shit happens, I’ll just sit out practice and be good to go tomorrow.” As my symptoms worsened, I still believed it to be a mild concussion, something most people recover from in a few weeks.
However, not only did I never return to basketball that season, I ended up not being able to return to high school. I was way too sick with post-concussion symptoms and a constant tension headache. It wasn’t the way I imagined senior year to end.
When I wasn’t at various doctors appointments and vestibular therapy, I spent my days watching The Ellen DeGeneres Show, in my family’s LoveSac, and looking forward to what else was on TV. I couldn’t be in a room with more than two other people, or the stimulation was overwhelming. It was a really jarring transition, from feeling on top of the world, to living with a brain injury. I remember how truly happy I was on Senior Night, the last home game of the season, on the Thursday before my injury. I had easily declared it the best day of my life. Then only a few days later, suddenly its a struggle to walk around without feeling dizzy and nauseous, when the other day you were dribbling and sprinting down a basketball court. But not only did I miss the basketball, I missed school. I longed for the days to complain about homework again, and be like every other senior in high school.
I ended up finishing my diploma that spring struggling through some sort of home schooling tutoring program. Luckily, I was still able to walk in graduation, and I refused to miss prom because I mean, come on, that’s a milestone moment. I went happily in my ear plugs and was able to last a few hours in that environment, and then pay for it the next few days. Worth it. In the summer I decided to defer Penn State for a year because I thought I would just get better then go when I was healthy. I mean of course I was disappointed, but people recover all the time. “Some people just take longer,” I was told. So no brainer right, just go to college when I’m healthy again.
During my year off, I tried vestibular therapy, exertional therapy, chiropractors, acupuncture, cranial sacral therapy, and many, many post-concussion medications. But nothing really seemed to be helping. It was difficult watching your friends all go off to college, what’s supposed to be the most important part of our lives, and I was stuck at home. I missed feelings of achievement, so my mom would take me to the craft store and find things I could fiddle with. A year after my concussion I was proud of completing a paint-by-number. It took me a month or two, of doing it little by little, and I was proud of it.
Still, every single day, I had a constant headache that had not ever gone away. In the first year, my general sickness, and post-concussion symptoms improved to tolerable levels. I would walk everyday a half hour as therapy, I took a yoga class, golf class, and drawing classes to try and keep busy. I was doing everything I could to try and get better. I was taking all the doctors advice, I mean trust me, no one wants to get better more than me. I won’t ever forget going to a doctor in Pittsburgh who specializes in headaches and migraines, and after following his advice for a few months, with no results, he told me: “Well if you take a car to a bunch of different mechanics, and the car still isn’t fixed, chances are there is a problem with the car.” Wow! Thanks for the charming metaphor you prick. That appointment didn’t end well.
When the time came to decide about college for the following year, a different doctor advised me to just stay home and go to community college. He didn’t think a big place like Penn State would be suitable for someone in my condition, and thought I should just stay home and go as I could. I was like ummm…fuck that. I didn’t work hard my whole life to just accept this is how it’s going to be. I knew then, even if I never fully recovered, I would be going to Penn State in that fall. I knew I couldn’t wait around for the perfect circumstances to continue on with my life. Just because this had happened to me, didn’t change who I was. I was still someone who loved to achieve and compete and be the best I could be, and it was killing me to be in limbo, not working towards anything. And I knew I would be happier if I discovered my passions, even though it would be difficult when my symptoms are exacerbated by reading, thinking, walking, doing anything at all actually. I began Penn State as a part-time disability student in the Fall of 2010.
So today is six years since my concussion. It is my fifth year at Penn State, my tenth semester, and I plan to graduate this December. I am majoring in Information Sciences and Technology and minoring in Film Studies. Since coming to Penn State, I have found passion for design, app development, and startup culture. I have had two wonderful internships with Boeing, and I plan to intern at DICK’s Sporting Goods in mobile apps this summer of 2015. I have learned so much, and met so many great people in the last five years that I can’t imagine my path being any different.
I also woke up for the 2,190th time this morning, living with a chronic brain injury, with symptoms, like this constant headache. Yep all the time, yep right now. Pain, always. I hardly remember what life is like without it, yet, time doesn’t just make me used to the symptoms, and the pain. I wish it did. But, what is more frustrating than continuous pain on the sides of your skull, are what I call my episodes. I’ve been told by some doctors its cataplexy, others its basilar migraines, but I have come to feel it doesn’t matter what it is called because no matter what it is, it happens to me. If I exert myself too much physically or mentally, my brain just breaks down. I slur my speech, I slump over, I have trouble walking, and I have muscle weakness all over. My friends, when my episodes occur, what I jokingly call, “Drunk Krista”, is in full effect.
So everyday, I still face these physical limitations, that I cannot control. In fact, I just had two of the most difficult weeks in a long time, where I had episodes everyday, and missed class for a week because I literally couldn’t get up to go. I tried to attend one class, sick of missing out, and just the effort of walking two minutes to class was too much for some reason and I had an episode upon arrival and left in tears. When this happens its frustrating beyond belief. I can’t really explain the irritation with my own body when it physically cannot walk two minutes to a classroom and listen to a lecture. Like, what the hell, get it together. But, it is absolutely beyond my control, and I just have to rest and wait it out. Luckily, I started feeling better, and more like my normal self two days ago. I am beyond fortunate that I am not always that sick. I was always a generally half-full kind of person, but dealing with six years of a chronic illness, you definitely recognize your blessings more, when you know how much worse it can still be.
It is challenging to live with a chronic illness. I am constantly assessing how I am feeling, to know when to take breaks, and how to schedule my time to be productive, and when to have fun. Noise and lights bother me. I wear an ear plug or two a lot in public places to help decrease the stimulation. Mental or physical exertion increases my headache, and exacerbates my symptoms of feeling generally out of it, which means I feel a lot more hazy at this point in the blog post than when I started. I have trouble paying attention unless I am looking at you. I have trouble concentrating, and have decreased mental processing speed or something that can be found in my ImPACT results test. It’s typical concussion stuff you have probably heard. I mean the headache alone, have you ever had a headache? Yeah, it’s like that except never ending. Lol. And I am still the same person as before my injury, interested in so many things, wanting to do it all, and take on the world, so when I have my symptoms physically stopping me it certainly makes me wish I didn’t have a brain injury and these limitations.
To be honest, sometimes it is really difficult to open my eyes in the morning and face the day, knowing how sick I feel, and knowing it will just get worse when I apply myself. But distracting myself with my passions, and feeling that sense of accomplishment is how I survive. Going to class, learning new tools and material, being a leader and reaching my goals, gives me that sense of accomplishment that makes me feel a lot happier when I attempt to sleep at night, then the days I can’t accomplish anything, and feel just as sick going to sleep.
A lot of people who know me, really have no idea about my daily struggles and thats okay. It’s not that I hate to talk about it, in fact, I’m human, and all I want is to feel related to, and understood, which is why I am finally writing something like this today, and have wanted to for a long time. Feeling understood can be extremely difficult, because no one can really understand, unless they have gone through this themselves. It’s no ones fault it is just the way it is. It’s a bad feeling to have to flake on someone at the last minute because I don’t feel well, and feel like I am a disappointment, without them understanding what I am experiencing. Unless you have experienced a concussion, and had my same symptoms the past six years, you can’t fully grasp it. Even if you have had a concussion, I can relate, but can’t understand your journey because every single brain injury affects everyone differently.
I spend everyday trying to ignore it the best I can and keep distracted, until I possibly have an episode and it can’t be ignored. Of course I am always cognizant of it, I really can’t escape it, but it’s not something that needs to be discussed, unless it needs to be discussed. Confusing, I know. Early on I developed a cringe reaction to questions like “How are feeling?”, because it’s the same answer in my head really, “I’m doing the best I can.” But over time, I have established my new normal, so my close friends and family understand when I say I’m “bad” or “good” what that really means for me. It’s all relative.
My brain injury is no doubt a big part of my life, and who I am. It shapes a lot of decisions I make daily. But, I am still me, and I do not let my constant pain, my headache, define me. I push my limits all the time. I have goals. I am still competitive. I enjoy getting better, succeeding, achieving. And I am still my own worst critic. Although before the injury, I was known as the athletic kid, and now I may never run, or play any sport over again. That’s okay. There are many other parts of who I am that I still identify with. I love working hard: I have a 3.99 GPA. I love being a good friend and helping people. I love being a dependable, loving family member. I love meeting new people and learning their stories. I love being creative, through designing and video editing. I love learning about technology, and how software works. The brain injury, although a part of me, will not, and does not, define me.
In the last five years, yes, I have still tried therapies and remedies, trying to figure out this monster and become healthy. To name a few, I spent a week in the hospital in the summer of 2011, where doctors tried to cycle various medicines through my body in an attempt to break my headache. Spoiler alert. Not only was it unsuccessful, but it turns out its not so fun to withdrawal from heavy medications all at the same time. I don’t recommend it. I’ve tried oxygen therapy, you know like when you lay in that chamber? I went everyday for a month or so. That was fun. Summer of 2012, it was discovered I had a bone spur in my nose and I thought for sure that was what was causing my headache (I did a lot of internet research). Turns out it wasn’t, but the surgery certainly helped me breathe better.
Most recently, in January 2014, I spent a week at the Carrick Brain Center, where Sidney Crosby went and found relief for his concussions. I met some great people who gave me a better understanding of what is going on with my brain, though not a remedy of how to fix it. Although these and other attempts have been unsuccessful so far, I am not, and will not ever give up hope.
To wrap this up, (if you have read this far, I really appreciate you), concussions are a real thing. They affect many people besides me. I didn’t choose to suffer a brain injury, but my life has been engulfed with how I reacted to it. Everyone has their own shit in life, and this is mine. The point of life is not letting our shit define us. It’s about overcoming adversity. It’s about using our adversity to build our own confidence and swagger about who we are as people. If you know someone who has had a concussion, maybe after reading this, you can relate to them a little more. If you, or someone you know is playing any sport right now and they hit their head. Take the necessary precautions. Get educated. However important the game, the practice, the whatever it is, life is more important. Sit it out, and give yourself the best chance to recover. Finally, if you are someone who thinks its funny to hit people in the head, please stop. The brain literally is in charge of who we are, respect it.
Finally, I want to thank my support system. I have an incredible family, and many friends, who are constantly there when I need them, and can even anticipate when I will need them, when I am being stubborn and ignoring my symptoms trying to be like everyone else. A lot of these people have chosen to know me, and chosen to be on this journey with me, and chosen to understand me. I would not be where I am today without them, and where I am is pretty damn good.