Syracuse University Freshman Takes Us Inside Her Head

By Jenn Castro
castroThis is the first time I’ve really told my story to anyone. So, here’s what I’ve been through in the past four years in what will most likely be a very long letter. Good thing my writing skills weren’t affected by my concussions.

As I sit here, a college freshman, stressed and anxious for finals week, I cannot stop thinking about one thing in particular: my concussions. Earlier today, I received a notification on Facebook that my mom requested me to like a page known as “The Knockout Project”. Having no idea what this group was before looking at the page, I am now feeling more empowered than I have ever been in my entire life.

Having a mom who’s on Facebook may be embarrassing at times, with her witty comments on your pictures that you just have to keep up on the page because she’ll get mad if you delete them. However, today, by requesting me to like this page, my mom changed my life.

As I sit here in the study lounge at Syracuse University in a room full of people, I am not ashamed that I have had tears streaming down my face for the past hour. I decided to check out The Knockout Project’s website; little did I know, I would soon break down like a child and I still can’t seem to stop.

Growing up, everything I did revolved around sports. Today, I continue to live and breathe sports. (I also endured dozens of injuries while playing these sports that have set me back immeasurably. Most people I know say I’m the most injury prone person they’ve ever met. That’s not really something you want to be told.) Some people think I’m crazy for how much I love Boston sports teams and Cuse’s football and basketball teams. Throughout my life, I’ve tried almost every sport there is, but I’ve stuck to three: soccer, basketball, and softball. That was, however, until concussions stopped me right in my tracks.

After playing soccer since preschool, I certainly had plenty of skill to play on my high school team. Freshman year, I was fortunate enough to make varsity, and I was thrilled. I never knew that the happiness I felt after hearing I made the team would soon change to depression, anger, frustration, anxiety, and a hatred of life. A few days after tryouts ended, I felt a pop in my leg after going up for a header. Granted, this time, I didn’t hurt my head, but I learned later that day I had sprained my MCL in my knee. I was thankful it wasn’t torn, but little did I know, that injury kept me sidelined for the entire season. It killed me to sit on the sidelines and watch my teammates play a sport I lived for, and unfortunately, this was just the beginning of one of many seasons I’d sit out because of an injury. Freshman year of basketball, I sprained my ankle and was out for a good portion of the season. Sophomore soccer season, after “recovering” from my MCL injury, I strained my quad and was sidelined once again. During basketball and softball, I certainly had my fair share of bruised and broken fingers, too.

Yes, I do realize that these aren’t concussions. I haven’t gotten there yet.

Just like soccer, I absolutely loved playing (and watching) basketball. Although I was always the shortest girl on the team, I was tenacious on defense and had a pretty fantastic three-point shot. I soon learned that the sport I loved so much would destroy my life.

Sophomore year of high school, I was on the varsity team. I had a very, very tough coach who was new to the program. He was harsh on us, which was emotionally draining. It was certainly a very physically demanding season as well, which, as an athlete, I didn’t mind, but it took a lot out of me after I’d been at school all day and most likely stayed up until 2am the night before doing homework. Some of my older teammates had gotten injured during the season, so I was called on to step in. I was playing phenomenally well and couldn’t have been happier with my performance. Even with two ankle braces and a knee brace on during every practice and every game, I began to think that all these injuries would be behind me. I soon realized that I was very, very wrong.

Because two of our best players were sidelined, our record wasn’t the best. Nearing the end of the season, we needed one more win to make it to the state tournament, and that’d all be decided by a game against Whittier Tech the Saturday before February vacation. If we won, we’d head to states; if we lost, our season was over. This was the first real test for me as a high school athlete in a high-pressured, tense environment. On the bus ride there, I listened to my usual pump-up playlist. Surprisingly, I wasn’t really nervous about the game. Heading into warm-ups, my shots were pretty consistent and I was feeling great. Being introduced as a starter as I shook hands with the opposing team’s coach and ran through my teammates’ handshakes made me feel like a superstar. This would be my game, I thought to myself. As our boys’ basketball team was watching on in the stands (because they were playing directly after us), I secretly wanted to impress a few of them with how I played that day. Turns out, I did, but I also scared them and everyone else in that gymnasium.

The game was extremely physical and fast-paced throughout. Whittier Tech’s fans were rather loud and dicey with the referees all game, and my coach sure had some words with them, too. With 1:28 left in the fourth quarter, if I remember this correctly, the game was tied. I was coming off a season-high seventeen points and three three-pointers. Their coach was so frustrated with how well I was playing that he moved his team’s defense to a box-and-one, meaning four of the girls would play a zone defense, and their fifth player would play man-to-man defense on me, as to prevent me from getting the ball and make my life a living hell. Even as the smallest girl on the court, I was definitely feeling confident. I had made some great defensive plays along with strong passes to my teammates on offense. Well, after that 1:28 mark, my life was never the same. Crazy how it just takes an instant.

Whittier was inbounding the ball and I was guarding their point guard. The in-bounder then passed it in, and their coach had devised a screen play for my girl to receive the ball shortly after. The story I’m about to tell is not from memory. If it were not for a father in the stands videotaping and for my mom who was also at the game taking pictures, I would have absolutely no recollection of what happened for the rest of that day.

As soon as the ball was inbounded, I obviously stayed tightly marked on my girl. Seconds later, I was “hit by a train”, as my coach later told me. An opposing player ran full force at me to “set a screen” so that my girl could get free and in turn run the ball up the court. As soon as I turned my back from the ball to run with my girl, I was blindsided by her teammate with a shoulder and body check to the upper body and head. All momentum in my body was soon shot backwards. I immediately fell to the ground in a curled up, fetal position. What was strange about this fall was that I could still feel heavy sounds of feet running up the court. I thought, did I miss the whistle? Maybe I was so disoriented that the whistle came immediately after I was hit and I just missed it. I was later told that the referee, who was standing within feet of me when I was hit, did not call a foul or eject the girl from the game. This play was clearly a deliberate plea by the other team’s coach to get me out of the game. Not only do I believe that, but in the video, my coach, and also my teammate’s father, can be heard screaming, “That’s a foul!”

jenncastro

 

So, anyway, as I was seeing stars and couldn’t feel my entire body laying on the cold, hard ground, I had no idea what was going on. I couldn’t remember my name, where I was, and all I heard was silence in the gymnasium. There were gasps among people in the stands and I didn’t hear voices until my coach and the trainer approached my seemingly lifeless body. They started asking me all sorts of questions and after what seemed like a half hour, I was helped off the court with an immensely large headache, dizziness, and an extreme fear that my life would never be the same.

I still can’t believe that girl wasn’t ejected from the game or even called for a foul. She never apologized to me and their coach never came over to see if I was okay. Their actions purely disgust me, but I’m not worried about their poor values because this is my life, so I’m only worried about myself. It still hurts me, though. They have no idea the impact that deliberate, malicious play has had on my entire life. I wish they did.

My team ended up winning the game in overtime. However, I was unable to really experience what that win felt like because I was sitting on the bench with ice bags on my head. My mom, who is the most incredible person in the world, has always taken pictures of my brother and I in every event we participate in. I do remember looking over at her across the gym, blurry vision and all, and her hands were in her face and she looked like she was crying. She immediately knew this wasn’t just another sprained ankle or broken finger that would take only a few weeks to heal.

My teammates were obviously ecstatic that we were heading to the state tournament. They were also concerned about my well-being. I ended up staying with my teammates to watch the boys’ game right after ours, which probably wasn’t the best idea. I assured myself I was fine; I only had a headache, I said. Bad idea, Jenn.

My mom immediately took me to the emergency room, as my headaches persisted. I was dizzy, nauseous (even though I didn’t tell her that), sensitive to light and noise, and had many other symptoms, too. From what I remember, which isn’t much, the doctors diagnosed me with a mild concussion. I was ordered to not use any sort of technology for a week, and was told to remain on complete bed-rest for a while until my symptoms went away.

**After showing this letter to my mom, she reminded me that I waited two weeks to go to the emergency room. I actually thought I was fine until I had practice and couldn’t run up the court without feeling like I was going to faint. Told you my memory was bad.

As a three-sport varsity athlete and High Honor student, rest was not something I was used to. I was incredibly busy and always on the go, so bed-rest made me feel like a couch potato. My friends and teammates reached out to my mom to see how I was doing, as I had no means of communicating with them. It was nice to receive phone calls, but after a while, I got really tired and upset of saying, “Yea, my head really hurts, and no, I haven’t left my bed.” I had never experienced a concussion before, so this whole process was very new to me. Certainly I’d had dozens of injuries before, but nothing, absolutely nothing, like this.

I have no idea who the man was who videotaped that basketball game, but I thank him from the bottom of my heart for doing it. If he hadn’t, I would have absolutely no idea about how well I played, and I’d have no recollection of the train-wreck that occurred with 1:28 left in the game. When I received a copy of the video, weeks after the game and weeks after my concussion diagnosis, I asked my mom if I could watch it by myself first. I had no idea what to expect, as I couldn’t remember a single thing from that game. So, I watched it from beginning to end. Right before the 1:28 mark, which I thought was ironic, the man videotaping held the video camera up to the scoreboard so as to see the score and time remaining. Soon after, the play began, and bam, as soon as I knew it, I was laying lifeless on the ground. When I saw the hit, I felt like I was going to throw up. It was one of those hits you’d only see in a football game where the defender would be flagged for a hit to the head. It was one of those hits you’d cringe watching every time for the rest of your life. I rewound the video to 1:28 about ten times just to watch the hit because I didn’t believe it was real. There was no way that was me. I had been having a phenomenal game, and just like that, it had all shattered. My heart broke after I saw that on tape. Obviously my heart broke when I was told that I had a concussion and couldn’t compete with my team in the state tournament, but this was really brutal for me to watch. After I gained my composure, I called my mom into the room so that she could watch it. Because her eyes are always behind a camera lens, it’s difficult for her to see what’s going on in much of the game if she’s capturing a certain play/person. I had no idea if she’d seen me get hit, even though she told me it happened right in front of her. As I sat on the couch and as she stood somewhat in front of me, I pressed “play” only for my heart to drop again. As I write this, tears stream down my face replaying her reaction in my mind. From what I remember, she made one of the loudest gasps and then bent over in what seemed to be frustration, fear, and anger. I really don’t remember much after that, but I’d assume it was followed by a long crying session and a very long hug. I think that’s what happened, actually. Then, the situation occurred again after I showed my dad.

Although I should probably be studying for finals right now, after reading stories on The Knockout Project’s website, I felt compelled to tell my own story. I’ve never gone into this much detail to anyone about this, and I feel my greatest strength is in writing, so that’s what I’ll do.

Thankfully, I had a week to rest and not have to worry about school immediately after my injury due to the fact that it was February vacation. After break, however, I went back to school almost full force, and I regret that deeply. I am so committed to my schoolwork that I couldn’t even begin to think about missing any days because of a head injury. I didn’t realize how big of a mistake this was until I was still struggling with headaches months after the injury. My teachers were understanding of what I was going through. My doctor had written very strict notes on what I could and could not do, although I didn’t listen to the “moderately go back to school” part. To anyone reading this, take their advice on that. Don’t push yourself. I did and it has negatively affected my life to this day, three years later.

I couldn’t stand being in brightly lit rooms at school, and the noise in my classes was unbearable. Unfortunately, being the tough girl that I am, I took medication and “shook it off”. As the weeks passed and I wasn’t getting better, my mom became concerned.  We went to multiple doctors who didn’t seem to have any reason as to why my symptoms weren’t going away.

Watching my teammates play in the state tournament while I sat on the sidelines broke my heart. We lost that game, and the locker room/bus ride home atmosphere was brutal. I cried as soon as that buzzer sounded. I couldn’t believe I held it in that long, but I knew I couldn’t cry in front of my teammates, my coach, and in front of people in the stands. There was nothing worse than watching them compete while I struggled with a pounding headache because of bright lights, bouncing balls, shouts from the stands/coaches, and whistles blowing.

Months passed and I still wasn’t progressing. It was soon April and softball season was approaching. Freshman year, I had made the varsity team for a coach I loved and a team I really enjoyed being around, so I was excited to head into the season. Little did I know, I would miss over half of the year because of the concussion I’d sustained in February. I was finally cleared to play over four months after the incident occurred. Even at that point, I still wasn’t feeling right. I had failed not one, not two, but four (maybe even more, I can’t remember) Impact Concussion tests in that four month period. I was anxious to get back to sports, so I kept taking them when I didn’t have a headache for a day or two, thinking I was getting better. They probably hurt my injury even more, because they were so incredibly time consuming, computer generated, and highly thought provoking.

The headaches and other symptoms persisted throughout the rest of my sophomore year and into the summer. I don’t really remember much about that time, but I do know it was incredibly difficult for me. Things were so bad that I had to eat lunch in the nurse’s office every day at school. Every day. I couldn’t handle the bright lights and loud noises a lunch room took on daily, not even for the twenty minutes we were allowed to eat. I spent every day from February 23rd-June 23rd in my nurse’s office. Granted, the nurse is a very nice lady, and I became close with her, but what high-schooler wants to be away from her friends during lunch, one of the only times during a school day where we actually get to sit down and relax?

As the days passed, I became more and more frustrated with my body. I didn’t know why these symptoms weren’t going away, and quite frankly, neither did my doctors. I saw numerous professionals and neurologists for months. They prescribed me multiple medications that only made my symptoms worse, and actually made my depression and anxiety worse, too. I woke up every morning with a headache and went to bed every night with one. There wasn’t one day for a span of months that I didn’t contemplate disappearing and ending my life. It was an incredibly dark time for me, not just because I couldn’t play sports I loved. I couldn’t understand why this was happening to me; just months before, I was a starter on the varsity basketball team and having an incredible academic year. Now all that was in the past and would stay there.

I don’t remember much about the summer after sophomore year other than continued doctors appointments, frustration, tears, and pain. Once school started up in September, I had to make the very tough decision to not play varsity soccer, as it would affect my health and future, especially if I got another concussion. After playing soccer for over eleven years prior to that, it was hard watching my teammates play a game I loved knowing I couldn’t, especially after not being to play in the state tournament basketball game and also missing half of softball season months before.

Once winter came around, it was time for basketball season again. I still had headaches everyday and my other symptoms were present, too. However, I still gave tryouts a go and played that year…that is until I got another concussion. This concussion occurred much earlier in the season than the first one. It was right before Christmas break (ironic how both were right before breaks). I found it also ironic that this game was videotaped, too. That’s the only way I physically saw what happened to me. I took a charge against a girl who was significantly taller, broader, and stronger than I was, and immediately fell to the ground. Although this is a normal procedure in taking a charge, when I hit the ground, I also hit my head and suffered severe whiplash. This hit wasn’t as severe as my first concussion, but as soon as I got up, I knew something wasn’t right. I was discombobulated and immediately had the same symptoms I had shown during my first concussion. Because I stayed down on the court, I had to come out of the game for a bit. However, once I satisfied the rule of coming off the court, I went right back in, and that was a mistake. After one or two plays, I knew my mind wasn’t in the right place. I motioned for my coach to take me out, to which he did, and that was the last time I stepped foot on a basketball court and the last game I’ve ever played, and ever will play, in my life.

Whoa. Did that last sentence give you the chills? It did for me. Yup, last basketball game ever. This was my second concussion and I was absolutely devastated. Basketball is no longer in my vocabulary because it makes me too upset to talk about. It breaks my heart every time I watch my brother play in a game, or every time I watch the Celtics/college teams play in the winter. To this day, three years later, the thought of never playing again still bothers me. I feel like it always will. I would do anything to lace up those shoes, put on those Nike mid-calves, and even my two ankle braces and my knee brace to play again. You know the saying, “You don’t know what you have until it’s gone”? Yea, well, it’s true.

**Also after showing my mom this letter, she reminded me that the game before the one mentioned above, I had hit heads with an opponent but kind of shook it off. So, two hits to the head within a two-day span.

Normally, athletes who remain playing throughout their four years get to have a senior game, where their high school career is celebrated, and they know this will be a special day. I always dreamed of that for all three sports. I only got it for one: softball. For basketball, I unexpectedly had my last game ever and never in fact knew that would be my last game beforehand. For soccer, I never even made it to junior year.

For the rest of that basketball season, I went to every single one of my team’s practices and games even though I couldn’t play. Aside from the heartache of being sidelined, the loud noises left me with extreme headaches, dizziness, and fatigue. I went home trying to focus on homework and studying, but just couldn’t. It was an extremely long three months. I had to delay taking midterms because I still hadn’t recovered.  I had to again spend lunches in the nurse’s office, and had to go home early from school many times because it was just too much for me.

It’s hard to go into detail about the rest of that year because I don’t really remember it. All I know is that I’ve never been more emotional and frustrated in my entire life. From February 18th of sophomore year until now, I’ve experienced the hardest times of my entire life. I haven’t even talked about the struggling social aspect of having concussions and I’m already seven pages in.

Continuous doctors appointments left me feeling empty. Medication after medication proved to be ineffective. I tried physical therapy for the whiplash. It was alright I guess, but it left me in a lot of pain, and it was time-consuming. I was still trying to stomach a full school day, watch my team practice/play, complete homework/studying, and then PT, and it was certainly hectic and stressful. I received multiple special massages that were supposed to “heal” my muscles, and they actually made my symptoms worse. My mom was doing everything in her power to get me better. I felt so bad because none of this was her fault, yet she had to take on the burden of research, calling dozens of doctors, and being concerned about her daughter all because I played a sport and was seriously injured. My dad was also affected by this too, but he hid it better. I only realized how hurt he was after I received a blessing from the priest at my local church and he broke down the entire time.

My depression and anxiety had gotten so bad during this time that I had to go to counseling, which I absolutely hated. I cried my eyes out every appointment (which I guess is what they want you to do??) but I disliked it because I actually had to tell someone how I was feeling. I’ve always been a person who keeps everything in emotionally, hence the point I made earlier that this is the first time I’ve really opened up about this and it’s over three years since the initial injury.

Come senior year, I once again had to make the very tough decision not to play soccer. Once basketball season came along, I gave tryouts a go and just couldn’t do it. Minutes in, I realized I would never make it through the season. I was dizzy instantly, my headaches were brutal, and I couldn’t even make it up the court without feeling like I had to faint. I was so embarrassed to be trying out for a physical basketball team in a condition like this, especially as a senior. I had broken down on the sidelines to the assistant coach and I told her there was no way I could do this. She encouraged me to stay a little bit longer to see if things progressed, so I did, but they just didn’t. This was one of the most heartbreaking experiences for me. I saw my basketball career dwindle and basically disappear before my eyes. I had originally been so excited about playing in my senior season, as every athlete should be, seeing as senior year is one of the greatest and most emotional times of our lives. As I came back for the second day of tryouts to see if I could muster it, I soon came to the conclusion that this was the end for me. As I unlaced my shoes and ankle braces for the last time ever, tears ran down my face. My teammates looked at me in confusion and I couldn’t even look them in the eyes. It was too much for me. It took me over a half hour to gain composure and bring myself to tell my coach that I wouldn’t be coming back. Walking to my car and out of that gymnasium was arguably one of the worst moments of my entire life. I felt like an absolute failure to myself, my team, my friends, my family, and most importantly, my parents. I was disgusted in myself. Damnit, just writing this brings me to tears. I fucking hate this. I fucking hate it.

(regain composure, Jenn, regain it)

I would like to point out that my boyfriend at the time did something that really helped me. Upon calling him in tears to tell him that I walked away from basketball, he knew right away that this wasn’t going to be an easy road for me. That night, after work, he walked out to my car with a bouquet of flowers with a beautiful ribbon wrapped around them, to which I’ll be forever grateful to him for. You may think they’re just flowers, but that gesture saved my life and he (nor anyone else) would have never known that until they read this very sentence. Thank you for saving my life, Riley McQuillin.

Someone along the road mentioned acupuncture. I never really knew much about it and wasn’t open to it at first because I’d become so incredibly frustrated with trying so many things and nothing ever working. I began going two to three times a week, and it made my body feel funny. During some appointments, as I had over twenty needles in my body, I bawled my eyes out, and other appointments, I just couldn’t stop laughing. The specialist said that was perfectly normal. The emotions released while someone is undergoing acupuncture are pretty cool, actually. Some of the places I had needles in were incredibly painful, and I couldn’t move for a whole hour in fear of feeling that pain. It felt like a pinched nerve if I moved a certain way, and I absolutely hated that. However, I do recognize that acupuncture helped me, and I am going to go back to it after finals week as I head into winter break. I hope it will help me now as much as it helped me back then.

I’m sure I’m missing a ton of things about what occurred doing those two concussions, but I just can’t remember everything. My memory has been affected severely since my brain injuries. I find myself often forgetting the simplest of things. It’s actually frightening. I feel like I have a 90-year old brain and it kills me inside. It really does. I fear everyday that I won’t be able to remember something on a test or remember something important that I need to do, and everyday, it always happens. I have to study twice as long as the average person and I still don’t remember many things.

Between those concussions, I took the Impact Concussion Test twelve times. Twelve. There are no words to describe how heart-wrenching it is to hear from the school’s trainer that my test scores were some of the lowest she’d ever seen, and even after months passed, my scores were even worse than they were immediately after the initial injury.

I’ve been writing this for over three hours. My hands are getting pretty sore and obviously my head hurts (what else is new). Time to wrap up.

Brain injuries are incredibly horrifying. I have been diagnosed with two concussions in the past four years, but surely, to my and my mother’s dismay, I have had numerous other hits and blows to the head that weren’t diagnosed. This experience has taught me to take nothing in life for granted. One day, I was having the time of my life as a sophomore on the basketball team, and now I’m a freshman in college still struggling with headaches, insomnia, depression, ADD, OCD, and anxiety.

I could go into the social struggles of having a concussion for another ten pages, but I just can’t muster up the courage. It’s too hard and too emotional for me. I just cannot do it. But, to the people who think concussions aren’t serious and that you can treat people with them like crap, then you have some serious thinking to do. You need to look back and re-evaluate your life. There is nothing more painful than having an injury that other people can’t physically see. There’s no cast, there’s no brace, and there are no crutches. Nobody can see that you’re physically, mentally, and emotionally dying inside. It is one of the hardest things I’ve had to deal with. After my second concussion, some people would walk around and say, “Wow, Jenn has ANOTHER concussion”, and not in a “I feel so bad” way. It was in a rude, inconsiderate, and incredibly hurtful way, like it was just something to brush off. Some people would even say that I was sitting out of games to gain attention. Absolute bullshit.

People don’t understand how painful concussions are until they actually have one. They affect absolutely EVERY aspect of your life. There are no words to describe how horrible I felt about myself after I heard some of the things people were saying about me. These past three years have been without a doubt the hardest of my entire life and I’m honestly not sure they’ve gotten better. Sure, I’ve accomplished many things since February 18th of my sophomore year, but headaches and other symptoms are still an everyday occurrence. I can hardly remember anything anymore. I can’t fall asleep at night. If I do fall asleep, it’s at 2am, 3am, or even 4am, and I then start my day at 7am. Doctors diagnosed me with anxiety and clinical depression. Other things happened, too. I’m just tired of crying tonight so I’ll end my story here. Thanks for reading. It means a lot to me to open up for the first time. I’d include more but this is over 5,300 words and I need to get back to studying.

I hope God has a plan for me. I know He’s putting me on this path for a reason, but I still haven’t figured out what this reason is. I just want to be happy and I just want to feel better. This has been so hard for me, my family, and my friends. My mom, dad, cousin, Aunt Debbie, and best friend Jordan, specifically, hate to see me suffer and would do anything in their power to help me. I appreciate them very much and am grateful to have them in my life. I don’t know what I’d do without them.

Whoever reads this, please pray for me. I have certainly achieved a lot since that February afternoon, but it’s still a very hard road for me and I need every prayer I can get. Thank you very much.

xoxo Jenn

Up and Coming NYC Corporate Young Gun Tastes the Sting of PCS

{Editor’s note: So many of us here at The Project have dealt and are dealing with Post-Concussion Syndrome from our days in sports. When I started The Project, it quickly became apparent to me that suffering people came from every avenue imaginable. Every sport whether collision-based or not was represented. What surprised me, however, were the people who I never considered that we heard from: soldiers, housewives from the Heartland who slipped and fell on ice, people injured in car accidents, cooks who had pots fall on their heads, and kids who hit their heads on the playground.  As a professional, *Anonymous joins the growing ranks of us who can now verbalize just how terrible and all-encompassing Post-Concussion Syndrome is.  –Jay}

By *Anonymous

anon-278x300My story as it relates to concussions started, unfortunately, at a very early age. I was around 8 years old, maybe a year or two younger. Playing backyard baseball with my brother and two babysitters, one of the babysitters hit the ball with a (metal) bat, and flung it away from her. The bat came whirling through the air at me; the thick part of it smashed into my forehead. I was knocked unconscious instantly, and woke up later (not sure how long I was out for) in my kitchen. Everything was bright, so bright it hurt to see, I was woozy, the world was spinning around me, and the sounds I heard seemed to somehow “blend” together. A large lump, almost the size of a baseball, grew on the front of my forehead.

At the time, no one really talked about it being a concussion. I don’t remember how we treated it, or what the doctors or my parents did to help me recover. That whole period is just kind of black in my mind. Eventually I got better and did not have, or seem to have, any symptoms of PCS… I was only a child, after all.

Throughout the course of playing high school soccer, I suffered two concussions, about a year and a half to two years apart. One time I went for an aggressive diving header and ended up flying head first into the goal post. Although I did not lose consciousness, I was sidelined, clearly “out of it,” and have this memory of the light being very painful for me in the days after this concussion. The second concussion came from another incident involving a low-to-the ground header; essentially, I was going for the diving header as another player wound up to kick the ball. My head got to the ball before the opponent’s foot did. When my opponent’s kick was executed, my head now occupied the space where the ball was, and I got a full force kick to the skull. I have absolutely no memory of what happened afterwards, the recovery, or anything in that general time frame. Though I did begin to grow depressed after this, it did not seem to be anything out of the ordinary “teenage angst” that everyone seemed to be going through. I did not think this growing depression could be linked to the concussions.

After this, it was about 7 and half years until my fourth concussion. I made it through college and almost 4 years in the working world without getting another concussion. That changed one day on my commute home at my former employer from Newark, NJ to Robbinsville, NJ. On the NJ Transit, I was sitting with a “train friend” of mine. I got up to go throw away some trash. The train lurched, so I tried to catch myself. In trying to catch myself in knee-jerk-reaction fashion, I propelled my head forcefully up and into the metal rails used to keep luggage bags above your head. I immediately fell back into my seat and was concussed. I do not have any memory of this, or the car ride home. Not sure how I was able to operate a car after this — I may have had my mom come get me, but I really can’t remember as I’m typing this. I do not remember going to a doctor, but I did see my family doctor at some point, who diagnosed me with concussion and ordered me home in recovery mode until I got better.

I was out of work for a while; that week after, light, sounds, TV… everything caused unbearable head pain. I couldn’t think or read or do anything I normally did. My depressed thoughts devolved into suicidal thinking, something I had never experienced before. I could not control my emotions or my thinking, and quite frankly, I wanted to die. I felt like a prisoner in my own body/mind. After nearly 2 weeks out of work, I finally went back. When I encountered my train friend, who I only ever interacted with on the train, she was very concerned for me. She tried looking me up but could not find me online, and we had never bothered to exchange numbers (since she was married and I was dating my now ex-girlfriend). She told me after hitting my head I was rambling to her as if utterly insane or drunk, going on about things that did not make sense or seem logical. Nor were these things connected to my train friend in any way… I was just talking and talking, kind of slipping in and out of awareness, as she later described to me.

She told me she never saw anyone start rambling like a lunatic after hitting their head, while also seeming to be on the verge of passing out. After this concussion, I started to experience depression like I had never experienced before. Depressed, suicidal thoughts became almost normal… and it seemed to take hours for me to build up the will to move. I never tried talking to family, friends, or even a doctor about it… I still did not see a connection between the concussions and the worsening state of my mind. Other than the diagnosis and being told by the doc to rest, I didn’t speak to the doctor again about it or the mental fallout that seemed to be happening to me. I would say after 5 or 6 months, my mental state started to improve and I was able to move past the depression, for the most part.

Finally, in March of 2015, I sustained my 5th and (hopefully) final concussion. I was with a new employer in NYC since November of 2014, and I started off tremendously strong at my new job. Everyone liked me a lot, and people were impressed by my willingness to take things on and always lend a hand. I was apparently a huge upgrade over the person who was my predecessor. One day before that 5th concussion, the wife of our CFO (my boss) came by our office to visit and when she met me she said “Oh so you’reeee the one I hear so much about! Well, let me tell you, he really loves you. Keep it up, kid.” I was ecstatic. I was on cloud 9. I thought I had been nominated for “top 30 under 30” or something really worthy of the great feelings that comment gave me.

That all changed after my 5th concussion… dramatically. Walking to work with ice on the ground, I slipped on my block just a few hundred yards away from my front door and landed on my back. My head jerked backwards and smashed into the icy concrete. I remember struggling to get up, needing the help of a person walking by to get back on my feet. Though I was woozy and really hurting, I was also freezing and only thinking of getting to work on time. I did not think I had concussed myself. I walked the 2 miles to the train station, got on the PATH train, and took it into NYC to go to work. The one memory I have of that walk is constantly wondering why walking was so hard. It didn’t make sense. I knew it was icy, but I also knew that my legs and body in general shouldn’t feel so clumsy and mushy because of ice on the ground.

On the train I nearly vomited due to overwhelming nausea, which did not start until the train began moving. Then I put two and two together, and realized I must have concussed myself again. After getting off the train, I turned around and went home, emailing my boss what happened. He was cool with it, since I had not called out before, and he seemed to be a sports guy, so I assumed he knew a bit about concussions and understood. I went to the doctor’s office who I told the story to, the doctor took one look at my eyes (one pupil was huge, the other was very small, apparently) and I was diagnosed with concussion; they ordered a scan of my brain. Luckily, there was no bleeding.

After this 5th concussion, everything in my life spiraled out of control. Horrible, earsplitting head/brain aches became common… every day I fight some form of head and/or brain pain. It is like an ever present, dull ache. Some days intense, other days less so. I thought about — and unfortunately continue to do so — suicide on an almost daily basis; I do not seem to have control of these thoughts. I do not want to think these things, but they come into my mind. There is no off button to press to make them go away. When I try to muster the will to shove these thoughts aside, it is like I am drawing power from a source whose supply of energy has dried up.

My mood swings became unbearable and uncontrollable. Depression worse than ever before, and there seems to be no end in sight. Never have I experienced anger that infuriates me beyond reason. Never have I experienced absolutely crippling depression, to the point where I don’t want to get out of bed. I also have this fluctuating pressure that comes in my head and seems to go from one side of my skull to the other. I hear ringing every so often as well, like a prolonged and subtle screeching-type of tone that no one else hears if I ask them if they hear the same thing. My eyes now also do this thing where they kind of twitch/flicker — not my eyelids, but my pupils. They’ll just kind of flicker without me intending to move them. Usually they flicker up and to the right. This never used to happen to me before my 5th concussion.

Many important aspects of my life suffered after this concussion. My relationship with my ex-girlfriend, a woman I am still very much in love with, who I once thought I would marry, suffered perhaps more than anything else external to my mind. Essentially, my PCS symptoms – notably, me and her being unaware that PCS was the underlying cause of my new-found, horrible perception of life – drove her to the point of having a psychotic breakdown. Without knowing about PCS, I let the mood swings and the anger consume me at times, and I treated her very poorly. My treatment of her eventually drove her away from me and made her display behavior that was extremely out of character for her. After learning about PCS, I have tried to recover and rebuild what we had, but the damage was already done… it is too late to fix, even after she knows why I changed so dramatically.

I was living with my ex for over a year before that March 2015 concussion. We were very happy together; no fights or bad things that were out of the ordinary for a young couple living together. As of Dec. 15th, 2015, we broke up in horrible fashion and she moved out. She cannot tolerate my mood swings, my anger, my depression, the way I have changed, the way I attack her verbally now when I am mad… when I think about the fights we’ve had, and how the root of them are my inability to control my mind and what I say when I am overcome with rage and anger… in addition to my inability to properly process and understand what she says… I want to cry. I get depressed. Dark thoughts invade my mind and do not relent. I wish she did not have to experience this, and that I did not use my words to hurt her, but I cannot turn back time.

My work suffered after this, tremendously. In fact, I believe I was almost fired, or came pretty damn close — I got in pretty big trouble and was put “on notice” about it — for chronic absenteeism and calling out too much… and for being late (which was not a problem before my 5th concussion), which is usually connected to a morning headache, poor sleep, or feeling really depressed and moving slowly. If you look at my work record, I did not call out a single day of work before my 5th concussion. Post-concussion, not only did I burn all of my sick time in calling out on random days, but I burned through all my vacation time as well, which work had to turn into sick time for me after my actual sick time was exhausted. Some days I called out due to headaches/migraines and some days I was just too depressed to move.

On top of this, at work I am unfocused, easily distracted, and seem to always have a slight headache when I begin to think deeply. I am just not the same employee — or person — I used to be. I routinely forget what I was working on, as I’m working on it. My work looks down on me for calling out so much. They do not want to hear about comparing my sick days pre-5th-concussion vs. my sick days post-5th-concussion. They see it as “an excuse.” I used to be the new young-gun, ascending star in the company; our COO went out of his way to tell me how bright my “Destiny” could be… now I am the problem employee, the one who gets eye rolled at if they talk about a problem (PCS), and the one no one wants to deal with. My thoughts are that soon, they will try to get me to resign. They definitely have not responded favorably to any of my PCS-related problems, or my explanations of the problems… I do not expect them to want to tolerate this much longer… nor do I want to continue commuting into NYC when it causes so much physical pain and mental stress; especially for an employer who is unwilling to make a compromise with me on a health issue.

Fights with friends, family, and random people on trains have amped up. I am systematically isolating myself from everyone who was ever important to me… at least, I was doing so before I was diagnosed with PCS and letting my altered mental state run wild, unchecked. Knowledge is power, and now that I know, I am doing the best I can to keep myself stable.

I am constantly on public transportation, going to and from NYC. The lights, the noises, the poor quality of the commute — getting jerked back and forth on PATH and subway trains — drives me CRAZY. Things that used to annoy me — people cracking their gum too loud, sniffling incessantly, or making tapping noises with their feet or hands — now drive me to the brink of insanity and make me seethe with rage. If I forget my headphones that day, it will be a miserable day, because I end up on the trains in fear of the sounds coming from commuters and the train itself. Even when I do remember my headphones, I get a headache from listening to my music… but it at least beats out the rage from listening to the noises people make on public transportation. I literally want to hurt everyone who makes a noise that makes me “tick”… I feel helpless saying this, but I cannot control the anger or rage and it is virtually guaranteed I will be extremely miserable and nasty the rest of the day. I am so mentally unhealthy, I do not know where or how to begin to get better. PCS is an extremely difficult opponent to fight… and I want to punch every single person in the face who looks at me skeptically, when I describe it to them.

I have tried to get work to be on board with letting me work from home, something almost everyone at my company can do — at least some of the time, which would be a great relief to me — but they won’t even entertain the notion. My position is not defined as a work from home position (which they had to “explicitly explain to me” as they like to point out), and nothing I tell them about concussions or PCS will change their mind. In fact, when I talked to them about this, they look at me skeptically like I am some crazy nut job off the street. I personally feel as if I would be a much healthier person, mentally, if I did not have to commute to and from NYC every day… at least until I get better.

So finally, about two weeks ago — around the same time as my breakup with my ex — I reached out to NYU Langone Concussion Center, which happens to be right around the corner from my job. I saw Dr. Myrna Cardiel, who was great… when I left her office, I felt so happy and confident she would be able to help me, I cried. In fact, thinking about my hopefulness now is bringing tears to my eyes. Dr. Cardiel said I undoubtedly have a bad case of PCS. She gave me migraine medication Cambia and prescribed Effexor, which I have not started yet. I am nervous to use the antidepressant, as I’ve never had them before.

At this point, I really don’t care what happens with my work or anything else. I just want to leave this dark and despair-laden place I have been in for ¾ of a year. My biggest struggle daily is dealing with my own thoughts and feelings. Since I have no sick time left (and since work is convinced I am some delinquent employee seeking to use sick time on a whim to feed my fleeting desire to randomly not come to work), I need to wait until 2016 when my time re-fills to really start doing what Dr. Cardiel wants to do. That includes a 5 hour long mental fitness test that will evaluate my psych, isolate different sections of my brain and measure how they are working, as well as rigorously test my memory. I haven’t mentioned it, but every step along the way from March 2015 to today has been riddled with random patches of lost memory. This memory loss has been a huge factor at work especially, as I am CONSTANTLY apologizing to people for forgetting to do something they asked me to do.

So after these tests in early 2016, Dr. Cardiel will start me on a more specific therapy that will be tailored to me, based on the test results. I think, out of everything she told me, what gave me the most hope was hearing: “You are not alone. We are here to help you, and we will. You will get better.”

Really, that help cannot come fast enough. I need it.

California BMX Racing Pro Reflects on What He Thought He Knew

{Editor’s note:  Is it finally OK for BMX Racers to talk about concussions? This is MY sport and I feel like awareness in the racing ranks has been more difficult to achieve than in many other sports. BMX racers are a slightly different breed mentally and physically, to put it lightly. Most of us think that we were forged in iron until it’s irrefutably proven that we weren’t. By then, the damage is done and the regret is incredible. 

Today’s knowledge comes Straiiiiiiiighttttttt out of Fresno, California. If you’ve followed the National USABMX Racing scene, you either know or have heard of Austin. I first heard of this blazing fast grommet on the tail end of my own career as a washed-up cruiser racer. He was about 15 years old and lighting tracks up. Now, he’s a pro and in his early 20’s. He has learned some things over the course of his career that he’d like to pass on. Continue reading

Yale Hockey Player Writes- Don’t Be a Hero: Second Impact Syndrome and the Risks Athletes Take by Playing Through Their Brain Pain

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Paige Decker

{Editor’s note:  In November of 2013, Paige Decker, a forward on the Yale Women’s Ice Hockey Team, suffered what she believed to be a rather minor concussion. What followed was a battle with a concussion so severe in its symptoms that it would go on to change her life forever.  Recently, Paige began to speak out about her injury and the healing process, which is something we know all too well about: You can’t keep an athlete down for very long- even in the midst of miserable symptoms. Motivation and determination tends to seep into different outlets when we are removed from competition. You can view her blog at www.theinvisibleinjury.net . Paige- keep at it. You WILL get there–Jay}

 

By Paige Decker

If there was one message I want you to take away from my journey, it would be this:

Do NOT play through your concussion symptoms.

This is a hard lesson to learn considering it is the exact opposite of what so many athletes have done their entire careers.  Practice of any sport basically programs a player to push through any form of injury, whether physical or mental.  This is something that is committed to muscle memory; whether it’s an ankle sprain, stress fracture, tendonitis, or pulled groin, you leave the trainer’s room and get back to business.

I was no newcomer to playing through injury.

In high school I played field hockey with a broken jaw, two busted teeth and a split open lip.  I played lacrosse with a broken wrist for three weeks before realizing it was actually broke.  And I’ve played with many of the common injuries I listed above.

These stories aren’t special.  Any competitive athlete can tell his or her own versions.
Injuries are expected and sometimes you just have to suck it up and push through it.

I mistakenly applied this logic to my concussion. Continue reading

Wisconsin Baseball Player Paul Mallas Writes In To The Project

mallascomboGood morning Knockout Project,

I have been following the organization for about the last year and a half since I discovered it on Facebook.

As a person who has suffered multiple concussions throughout my life of 37 years, I want to say thank you. I’ve always been an active person. Like many, I played football and baseball through high school and college baseball as well.

As we all know as an athlete or an active person, we all suffer bumps and bruises. In the past, I always heard the phrase, “Are you hurt or injured?”- which is Coach’s speak for “can you suck it up and play or not?” I never thought much of these words until my last concussion on July 14th, 2013. It was a typical summer Sunday morning baseball game in a competitive, local, adult league. I singled and a few pitches later, found myself caught in a run-down. Usually, “Pickle!” from the movie Sandlot would fill my memories of getting caught in run downs. Continue reading

Virginia HS Junior Reflects On “The Journey”

{Editor’s note:  When we tell our stories, it’s as much to get them off our chest as it is to release the regret that we feel for having done something to ourselves that likely could have turned out differently if we knew ahead of time that suffering like this was even remotely possible. Marissa is very eloquent in this piece, but what should not be lost while reading it is the very real physical and emotional pain that she still feels to this day. Saving others the expense of dealing with this pain is a common thread in all of our experiences. These stories are all here for a reason. Heed them. –Jay}

flora

Marissa, left, and friend

By Marissa Flora

“Invincible,” the word that would rush through my head each time I stepped out on the field.  It was a reminder that I would never be the one to get hurt, and if I did, I somehow convinced myself that I could play through anything and I would be just fine.  These days, that idea has changed; “invisible,” is now the word that rushes through my head each time someone does not ask, “What’s wrong?”  No one can see my injury, no one understands what I struggle with to get through the day, and no one knows how much harder I have to work to be successful. Continue reading

Teenage Athlete With PCS Writes About The Death of Kosta Karageorge

{Editor’s note: I received the following piece from a teenage athlete who suffers from Post-Concussion Syndrome. I speak to this person often, and they have the benefit of a constant and all-encompassing support system with everyone from multiple professionals, family, and peers. That’s important.

Post-Concussion related suicide is the 800 pound elephant in the room. It’s obviously a touchy subject and hard for some to understand, but it must be talked about in the open rather than trying to reverse engineer after the fact why someone who can no longer speak for themselves might have done it.  I recently had a conversation with an AP reporter whose head was swimming with trying to sort out the rationale behind why someone with acute PCS might take their life. I told them quite simply that, “People don’t want to be dead- they just want the constant misery and pain to end”. Unless you have felt it, it’s very difficult to understand. It is an unbelievable level of suffering.

Part of our job here at The Knockout Project is to show others that the incredible pain that comes post-injury doesn’t stay at that level forever. There is light after all of that darkness and you simply must hang on and get good doctors involved. This is why we speak. It can and does get better.

If things ever get too intense, PLEASE call the National Suicide Prevention Hotline 24×7 at (800) 273-8255. Bad times do not last.   –Jay}

despair

By Anonymous

“Suicide.”

As soon as I saw the news report, I had to leave the room, retreat to the bathroom and bawl my eyes out. Kosta Karageorge, the former defensive lineman for the Ohio State Buckeyes had been missing a few days before he was found dead in a dumpster with a handgun nearby. My heart sank, broken into a million pieces, and my thoughts and fears were uncontrollable. My heart raced and I could barely breathe.  I could not fathom what was happening.

I did not have to bring myself to understand why or how; I already knew. Pain. Continue reading

PCS: A Parents’ Perspective

{Editor’s note: In 2012, I was contacted by a then-sophomore in high school who was having trouble dealing with the rigors of PCS on top of trying to be a student. She asked me to help her work through things. What came out of that has been a wonderful friendship with a very resilient girl who is now a freshman in college and who still soldiers through some absolutely incredible symptoms. She always tells me how tough I am, but I think she’s tougher. It has also earned me a director on our board in the form of that very resilient girl. Who better to help me guide the trajectory of The Knockout Project? I am thankful that Alicia has such great parents who will go to such lengths in her search for good health.  –Jay}

jensensFrom left: Mike and Joy Jensen with their children Mike, Alicia, Sean, Ashley, and Matthew

By Mike Jensen

As any parent would agree, the most difficult and stressful job you could ever have is raising a child.  You take all of your experiences that you learned in life, and use them to guide and teach your children to meet the challenges that life will throw at them, and hopefully they can build a better life for themselves and future generations.  But, there is one thing you can never prepare for.  That is if your child is sick or injured.  When Alicia got her concussion in April 2012, I was concerned, but, with the little experience I had with concussions, I didn’t know what to expect.  When I was in youth sports, if someone got hit in the head, or, as we used to call it “got his bell rung”, it was no big deal.  Even if the word concussion was mentioned, the consensus for getting better was a few days rest.

I learned a lot since April 2012.  Alicia was 15 at the time, been playing soccer since she was 6, never got too badly hurt.  Not even a minor injury would set her back too far.  On this day, she was defending a play when the opposing player attempted to kick the ball down into the offensive when it struck the side of Alicia’s head.  She went down, got right up, slowly, and said she was fine.  That was right at the end of the half, so there was no real question of removing her form the game, the half was over.  After half time, she felt OK, went back out, and right at the end of the game, she got hit again.  Hit twice the same way in the same game.  After 10 years of soccer, she played her last game, and has had a debilitating headache ever since. Continue reading

South Coast MA Soccer Player Lindsey Santos: 4 Years and Counting

By: Lindsey Santos
Edited By: Carolyn Kenney

santos3I think it’s about time I use the real date of when I actually got my first concussion. I’ve been using different dates in my writings in the hope that it will scramble my memory and I’ll forget eventually the date that is imprinted in my mind. Well, it didn’t work like I hoped it would.

So, I will use the real date: October 28th, 2010.

It was a cold, dark night. Our blood was pumping, fueling our energy as we arrived at the high school. Lights were shining down on the field that we were about to play on. Tension was growing as both teams warmed up for a rival conference game. I had played over 2,000 games of soccer, and I had no idea this one would end up changing my life. I was having one of the best games of the season. Distributing the ball and getting around people came simple to me. With one minute left, the score was zero-zero. We had a corner kick, so I went into a position where I could run in and head the ball. As I was jumping up, I was grabbed by the waist and pulled down to the ground. Before I had time to react, I was kicked in the head two times before blocking the third strike with my hand. I got up and took a few steps before I felt overwhelmed and threw up. I jogged myself off the field. Little did I know I would be on the sidelines for three months. Continue reading

Simmons College Freshman Reflects on the Past Three Years with PCS

By Madeline Uretsky

madeline

Recently in my college writing class, I was assigned to write a paper on a learning experience. Naturally, I chose to write about living with a brain injury. I hope that this can be of help to anyone suffering, or any caregivers who may need hope.

Sunglasses on, and slumped in my seat, I awaited the verdict at the first of many appointments with my neurosurgeon. After producing an unsatisfactory symptom chart, and failing almost every test, I knew that I would be diagnosed with a severe concussion and neck injury. Everyone I had come in contact with could tell that something was just not right with me. Was it the fact that I had no short-term memory? That I wore sunglasses inside my dark house? That I could not walk on my own? Or, that I was unable to hold a conversation? My fifteen-year-old self never could have predicted the physical and emotional effects that followed this first appointment. While painfully recovering from this injury for over three years, persevering and giving hope to others has helped me to find my place in this world. Continue reading

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