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.

However, this one ended with a head first slide into 2nd base, catching the short-stop’s knee in my face.

Being woken up with my head face down on 2nd base by the umpire should have been my cue to exit the game. But, was I hurt or injured? I had no idea. I tried to shake the cobwebs like all those times in the past that one “just gets their bell rung”.

The very next pitch I was picked off 2nd base because I had about a 20-foot lead and had no clue the game was already continuing. Being that this occurred in the first inning of a 9-inning game, I continued on and still thought little other than that the cobwebs would shake out at some point.

The cobwebs still continue.

My memory, focus, and daily awareness are not what they were prior to that injury. These challenges seem minimal to many outsiders as they can’t necessarily see your injury that still lingers. That can make a person really feel alone in their battle leading to anxiety and depression. These are all things I’ve encountered post-concussion. Still, I want to pass on the message that no one is alone and that things do get better. I’m very fortunate to have an amazing family and wife who have seen me through and picked me up when I have had a difficult time in doing so.

Yes, the headaches may come and go. Memory and focus might not ever be as sharp as it used to, but we Never Quit. These deficiencies are off-set by the sharpening of other skills and the pride to overcome challenges. Thank you Knockout Project for the work you do. Just reading the stories that people have shared helped me not feel alone when I didn’t think anyone could understand what I was going through,  as well as the awareness you shed on concussions. For that I am thankful!

Win the battle,

Paul W Mallas

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.

It all started in the winter of 7th grade and the first year with my travel team, Ashburn Impact.  We were playing indoor soccer against our rivals.  I was headed towards the ball which bounced off the wall and rolled back to me, what I didn’t know was that one of the other team’s players was right on my back with her arms out straight.  Before I knew it, I was flying face first into the wooden wall.  As a dumb middle school student, I thought nothing of it and I only had a slight headache, dizziness and never lost consciousness.  I continued playing but my coach noticed slight confusion and took me off the field.  I went home, took it easy, and went to my pediatrician the next day.  She told me to rest for a few days without any stimulation; I did, and was back at school within a week with no problems.  I was in great shape and continued playing competitively and as physical as I always had with no fears.  I was never aware of the danger I could be putting myself in just after one concussion.

I learned that lesson just over a year later; I received my second and worst concussion on May 27, 2012, in a Memorial Day weekend tournament.  I have no memory of the tournament, but I have seen pictures and have been told this story multiple times since then.  It was over 95 degrees on the turf, and we were all on the brink of heat exhaustion, but that did not stop us.  I was receiving a goal kick from my own player; I jumped up to trap the ball but misjudged it.  I ended up taking the ball straight to the face, but that was not the end of it.  Moments later, a defending player ran through me before I touched the ground.  I flipped over and hit my head on the turf.  I was able to get up on my own and continued to play, or at least I thought I was playing but really, I was running in the wrong direction, away from the ball.  My coaches pulled me out of the game immediately, and I will be forever grateful for that decision because I was unable to make it myself.  After the game, I was unable to eat without becoming ill and I could not even walk without debilitating dizziness and headaches.  At that point, I should have gone to the Emergency Room but I did not.  We went back to the hotel at some point and I was babysat and forced to hydrate until I was able to fall asleep.  After all of that, I convinced my parents to let me play in the two following weekend games to finish out the season.  Looking back, that was the dumbest and most dangerous situation I could have put myself in.

The months that followed were full of headaches and symptoms such as dizziness, fatigue, and extreme irritability.  Doctors warned me and said to rest but with school out for the summer, I chose to do things such as swim, exercise, and use lots of technology, which I knew not to do, but it just ended up furthering my recovery.  The headaches continued into my sophomore year of high school, and my neurologist prescribed maintenance medications to control them.  In the fall, soccer started up again and I played through headaches until the last weekend…

My third concussion occurred a short, six months after my second in the end of season tournament, on November 18, 2012.  I was defending an opposing player, who had the ball and she elbowed me on my left cheekbone but I played through it thinking nothing of it.  My cheek was swollen and sore, but I had no concussion symptoms until 3 days later, at the start of Thanksgiving break.  I had gotten a headache that did not go away for quite awhile and the dizziness and irritability worried my parents and I.  I went to my concussion clinic almost a month later, took the Impact test, and was in the one percentile for reaction time, in my age group.  That is when I heard the words that I knew deep down were coming very soon….“I would not feel comfortable allowing you to continue playing contact sports.  If you were to get another concussion, it could result in permanent brain damage.”  Those words changed my future goals of playing high school and college soccer  and my love for the game turned to spite and sadness…I left that office with tears in my eyes knowing that I had played my last game of competitive soccer.  That winter was just as bad as the drive home from the doctor’s office.  It had sunken in that I was no longer preparing to play my first high school soccer season, instead I was crying myself to sleep and asking God, “why me?”

However, my soccer days did not stop there, I became the varsity manager for my high school girls’ soccer team, this meant that I was always in the locker room with the team.  On May 13, 2014, during my sophomore year, I was standing in the locker room when the wood door swung open right into the side of my head; it was not a major hit but just enough for my symptoms to flare up.  I was dizzy and had migraines worse than usual, for days.  In the mean time, I, irresponsibly, hid it from my parents in fear of their reaction and the consequences of getting a fourth concussion, because for some reason, I believed that if I did not say anything, it could not be true.  Unfortunately, (or fortunately depending on how you look at it) one of my teachers noticed my confusion and fatigue.  He called me out and said, “I’ll give you 48 hours to tell your parents, or I will.”  I did not want that so I told them.  They were not surprised and just told me to take it easy.  I made it through the end of the school year and relaxed most of the summer without problems except the usual headache.  I cannot thank that teacher enough for that courageous move in the interest of my health.

School started again in September and I had more problems than ever.  I could not concentrate or memorize vocabulary, and I was much more exhausted, and the stress began to take a toll on my emotions and well-being.  I knew something was wrong and informed my parents.  They decided to take me to a neuropsychologist, and they recommended that I go through with the neuropsychological testing process.  It was a grueling 8-hour test to analyze every single part of my brain.  Four weeks later, on December 31, 2014, I was officially diagnosed with post-concussion syndrome, it also identified attention problems, processing/organizational deficiencies, possible fine-motor issues, and possible depression, all consequences of my multiple concussions.  They recommended a few helpful accommodations for school and we are now in the process of implementing a 504 plan until I graduate.  This was a huge step for me as I am very stubborn and hesitant of change; I did not want to admit to needing help nor receive help at all, but in the end I need to do what will help me succeed in school and life.  Since then I have had setbacks making me realize how important it is to protect myself as well as how easy it is to get a concussion after already having multiple concussions.  It is a scary thought, but I am not living in fear.  Things happen, and there is no reason to live paranoid…just aware.

Life goes on, I truly thought my life was over without soccer but it was just beginning.  I have had multiple opportunities to share my soccer abilities with others; I have been the varsity soccer manager for my high school for three years, which has given me the ability to interact with the players as well as get insight on Athletic Training, which I hope to be my future career.  More importantly than that, I was able to coach a beginner, youth soccer team and share my experiences with the next generation, which is so much more rewarding than any step I ever took on the field as a player.  I will continue to stay involved in the sport because, no matter what, I will always have a love for the game.

My concussions, and the events that go along with them, will haunt me for the rest of my life, but I will not regret them.  I am now much more aware of the seriousness and consequences, and am able to help others get through the injury, and give coaches the knowledge they need to protect their players.  The strength and support I have gotten through this journey, I will be forever grateful for; without my club coaches, Kris, Dan and Mark, as well as, my high school coaches, I would not have the courage to come back to the field each day and sit on the sideline.  Although, most of all, I am thankful for my parents, for believing in me when I did not.

My journey has not ended. I am still recovering, but God placed me on this earth for a reason.  The saying “everything happens for a reason” is something I have always held very close to my heart; I have grown as a person and as a student, and know I have to do something in order to help others get through this far too common injury.  Which is when I came to Jay and I can’t thank him enough for this opportunity.

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.

Karageorge had sustained a number of concussions and much like me, probably suffered with deep depression and chronic pain. He was not able to understand what was happening to his mind and body that was once so perfect and gave him so much.

I knew as soon as it was confirmed that he was found dead of an apparent suicide. I knew his exact thoughts that lead to him pulling the trigger. I knew the pain he felt and that he believed he saw his way out. But, the first words out of my mouth after I heard the news was, “why didn’t you hold on a little bit longer?” In my experience, when an episode like this happens, it never lasts forever. It is a moment; a breath; an hour; but it never lasts forever and it’s not reality.  It has definitely taken me years to realize that. I have felt and thought what Karageorge felt that day as can anyone in chronic pain. I can tell you firsthand what it feels like to want nothing but death; to wish and pray that you die so you don’t have to live in pain any longer; to show the doctors who told you “there isn’t anything else we can do for you” how much pain you are in; to show everyone around you how concussions cause long-term physical, mental and emotional pain.

Karageorge was in a dark place and the pain he felt was real. Perhaps his brain injuries caused his depression which made him unable to regulate his brain chemistry? Maybe he was too scared to ask for help? Maybe he was too scared to admit that he needed it? Or, maybe he was too scared to give up the game that was so central to his identity? Whatever the reason was, I have thought them all and I have asked myself the same questions. There is help. He just could not seem to find it or ask for it.

The past few weeks, there hasn’t been a single day I haven’t thought about Kosta Karageorge.

At one point, I could not get him out of my head and I was writing his name on my doodles in class. My roommate got scared because in the middle of the night they heard me talking and crying in the middle of my sleep saying “You didn’t have to die. Why did you do this?” and “I am so sad”. That was scary, because even while I was sleeping, my mind was there with him and I could not shake it or escape it although I so badly wanted to. It has gotten better over the last few weeks, but it will definitely take some time for me to work through.

So, what does this do for the rest of us?

What does this do for all of us still suffering each day and who are trying to find the light in depression and anxiety caused by brain injury? Karageorge’s suicide is frightening; it steals hope. It doesn’t give me much determination. But, it does give me a reality check that my symptoms and pain are real. I know how hard it is. I know what it is to feel that you simply cannot go on any longer; that you cannot move, breathe or do anything without pain. I know what it is to feel like your life is pain 24 hours a day, 7 days a week no matter how many doctors you have seen. I know what it is like to sit on the cold bathroom floor and pray for it all to stop: to sit there and say, “I give up. Take me please.” I cannot help but to wonder if this will happen to me. I say it will not, and I say that I am stronger than that. But, I also believe that Karageorge was as strong as I am. He fought his hardest as I do every day, and just because he could not fight anymore does not make him weak. It does not mean that he took the easy way out. It means that the pain was unbearable and he believed he had no help. How can I sit here and say that will never happen to me? We do not know our futures, and we do not know what tomorrow will bring. We can only work hard and live each day. I have been given helping hands and guiding lights to help me see my way through, and I have faith I will make it. I know that no matter how bad the pain I felt in response to Kosta Karageorge’s passing, it doesn’t compare to the pain my family and friends would feel if I made the same decision that he did.

I did not know Kosta personally, nor had I even heard of him before any of this happened. But, I wish that he would have held on for a little bit longer and searched for help. If there was one thing I would tell him if I were given the chance, it would be “I know how you feel, I understand. Let me help you.” Those words alone can save the life of a person in pain.

Rest easy Kosta, you are not in pain anymore.

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.

How does a parent deal with that?  I don’t care about the soccer, I know she loved playing, and being on the sidelines for the rest of the season was not going to be tough, her only regret is that she didn’t stop playing on her own terms. I know she wanted to play in college, but I knew she would succeed through her academics. My concern now focused on what to do next.  Hospital ER diagnosed the concussion, X-ray showed no fractures, MRI showed nothing abnormal, so we were relieved and thought it would work itself out.  See your family doctor and monitor the situation was their advice.  We were wrong.

We have been to at least 19 medical professionals, orthopedic surgeons, neurologists, physical therapy, vestibular therapy, ophthalmologists, chiropractor, massage therapists, surgeons….  All had different diagnoses for the headaches.  Tight muscles, eye convergence problems, atlas bone out of alignment, nerve swelling.  Who is right and what do we do?  A parent is never prepared for this.  The quality of life for my kid is severely diminished. There is no “How to treat your child with Post-Concussion Syndrome for Dummies”.

I saw it in her everyday. Most days she could not even make it through the entire school day without having to go home early. Or having to go in later was also a way to get through the day. I watched as she would lay in bed, in pain, with the lights off and wonder to myself “how can my healthy, active child feel so much pain, and nothing can help her?” It was not fair, and no child should have to feel it. No parent should have to feel hopeless and not be able to help their child either.

A few nights we would put Alicia in the back seat and take her to the Emergency Room at a nearby hospital where they would tell her she was just suffering a migraine and give her two Aleve and send her home. No one was helping her and no one was taking this pain away from her.

Her grades were suffering, her social life was suffering, all because she was physically suffering. She could not get her work done for class because she would come home and sleep right after school until dinner, which a lot of nights the nausea did not allow her to enjoy. And then she would go right back to bed for the rest of the nights. She was an AP and Honors student, we could not understand why she was failing her classes and not performing well all because she got hit in the head a few times. It was a very dark path for a few months before we found a little help that eased some pain.

Fortunately, there are resources.  When Alicia’s school work became affected, she was put on a 504 program where she was given consideration and extra time to complete exams and assignments.  The guidance department at her high school was tremendous in helping her get through the last 2 years of school.  Not pushed through, she earned it, battling every day.  For a parent, it was amazing to watch our child be in so much pain, and feel so hopeless because no one could help her; but knowing she was pushing through gave us strength as parents to be strong and keep pushing for treatments and a better life for our child.

This is where we are most proud.  Even on her worst days, Alicia never let on that this was going to defeat her.  She became involved in concussion awareness groups through The Knockout Project, Moms Team, the National Council on Youth Sports Safety, the PASS initiative (Protesting Athletes and Sports Safety, where she is a student ambassador and will be traveling the country next year to promote concussion awareness), Concussion Connection to get the word out that a concussion is nothing to take lightly.  She sat on a panel with former NFL  players who had concussions during Super Bowl week in New York at the United Nations.  You should have seen the look on their faces when they were lamenting their careers after concussions and she told them that there are a lot of kids just like her who were just hoping to make it through high school.  Proud moment indeed.

The Knockout Project has given Alicia something that maybe as parents we could not, understanding and community with people who were going through it with her. Posting on the foundation’s website has made us very proud, and many of our friends and relatives tell us how inspiring she is. Alicia inspires us everyday.

I always like to look for the silver lining of any situation.  Part of me thinks that some good came out of all of this.  I think that Alicia has shown to her parents that she is going to be OK.  Nothing could make a parent more proud than to know their child can take a bad situation, face it and turn it into something positive.  Would I turn back the clock to that Sunday in April and prevent that soccer ball from hitting her?  Absolutely.  But I cannot.  So we have to move forward, more doctors, more therapies, until we find the solution.

As Vice president of the student government at her High School, Alicia got to give a speech at graduation.  Through one of her bad headaches, she addressed the class about the future.  “We’re all in this together” was the overriding theme.  That’s true on so many levels.

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.

When I received my second concussion, I was in a basketball game. I was elbowed in the head while fighting for the ball. I knew immediately something was wrong. My vision was off and I didn’t feel right. The athletic trainer, Kelley, was quick to notice it and sat me out for the rest of the game. This was only one week after being cleared from the soccer injury, so when I went back to Boston Children’s Hospital, my doctor was not happy. He stated that if I were to receive another concussion he would pull me from sports. Let’s just say I didn’t go back to him after leaving the hospital with a third concussion practically a year later. I had definitely had more hits to the head in-between, but if I were to report them, I knew it would just be the same thing all over again.

The third time, I took a soccer ball to the temple. It was a full force strike that nailed me straight to the ground. I heard my coach come over and he was keeping me alert and asking questions. I stood up slowly and walked off in disbelief. The next few weeks were horrible. I could barely handle a car door closing without feeling like a gong went off in my head. The worst part about my concussions is how my personality has changed. It is so frustrating to know that I’ve changed but I can’t change myself back. Before all of this happened, I was the happiest kid with a contagious smile. Now, if you can get a smile out of me, then you’re doing a good job of entertaining me. Sometimes I can’t be as enthusiastic as I used to be about certain things. As much as I hate to admit it, my emotions are everywhere. I can go from being upset, to manic, to angry very quickly. Thankfully, I have learned to control my anger in better ways than I did two or three years ago. I now either ignore the situation and try and tune my head into something else, or I just become very quiet.

My anxiety can sometimes kick in randomly, too. One time, I was sitting in Biology class and out of nowhere I had an anxiety attack. I had no idea what hit me and I barely walked myself to the counselor’s room. Once I sat down she thought someone had slipped something into my water because it seemed like I was intensely high. The most displeasing part was when my dad had to come pick me up from school because they thought I was under the influence, and they rolled me out in a wheelchair, which was totally embarrassing. My anxiety attacks consist of feeling completely disoriented and unable to tell what reality is. Everything seems to move so slowly and I can’t grasp onto anything. It’s as if I’m falling in slow motion and I’m trying to hold myself up but it’s just an endless cycle I’m trapped in.

Ever since my concussions, I obviously haven’t been the same. I used to play sports year round. Due to the concussions, I was prohibited from doing strenuous activities and I couldn’t even make it through school half the time. This took a huge toll on me. I loved soccer and basketball, but I was sure I would be able to do other things. Before this happened, I went to a lot of events like games, the movies, nights out with friends, etc. Now, with my head, my sensitivity to noise, and my anxiety around a lot of people, I can’t really do much of that without getting a relapse headache.

Once I was allowed back to school I was completely confused, as if I had just come out of a four hour movie I didn’t understand. Everyone expected that I would just pick up where I had left off, and this was more pressure than I could have imagined. My teachers welcomed me back with work I had missed, and coaches were pressuring me to come back; the pressure was mounting. Classes were the most challenging obstacle of all. As soon as I tried to read an assignment, I got an instant headache. Struggling to make it through my classes became almost an everyday thing. I would ask my teachers for help and they would try to give it to me, but I just couldn’t comprehend the information. Asking for extra assistance soon fell off my table of options because it had started to feel pointless and even some of my teachers started giving me a hard time because they didn’t know what to do with me. Sometimes I would finally start to understand, but as soon as they were not there to guide me, I would be lost again; it was very aggravating. The 504 plan didn’t help much at the time, either. Some of my teachers weren’t aware of my condition and some major assignments were counted against me, which only made things harder.

Although I might appear fine to others, especially the uneducated ones, I’m not. The only time someone usually asks if I’m all right is if they see that I’m unable to stand up and walk straight. I was told once, by a fellow concussion friend, that she prefers to deal with her cancer than her traumatic brain injury (TBI). She reflected on how people treated her better when they realized she had cancer. Because concussions are an invisible injury and there is no specific treatment, she noticed that people didn’t think much of them and she wished they would be more compassionate. Dealing with headaches everyday, having trouble with memory, experiencing vision problems, and being used as an experiment is tiring.

Over the course of two years, I have been prescribed seven medications from my neurologist to try and cure my headaches. This doesn’t include painkillers and muscle relaxers from the ER visits, and four nerve block injections to my head. It’s hard to pick which one hurt most. Now I am under the care of Dr. Andrew Judelson at Spaulding Rehabilitation Hospital. So far he’s only prescribed three different medications, but I have never felt more confident in a doctor before. We’re getting somewhere; I can feel it. I was first prescribed Amantadine and that has helped a lot with getting through school. The other two are to help with the headaches / migraines, but nothing so far as worked. He referred me to Southcoast Rehabilitation Center for physical therapy, and speech therapy, which was easily one of the best decisions a doctor has made for me. My physical therapist, Angie, helped tremendously with my neck and vestibular problems. My speech therapist, Eileen, somehow improved my memory and attention without me even really realizing it was happening. I remember getting these horrible headaches when I first started seeing her and by the end, the work didn’t bring on a headache at all, which is huge for me! All the staff members there are awesome people, and I totally recommend them to anyone who needs the assistance.

Although I have improved, I still have everyday issues. It’s not easy at all. The impact can be very real, and very hard to cope with. I always thought I was mentally strong, but when I have to actually be strong and climb my way back from rock bottom, I’m tested several times on how strong I really am. Depression will set in, and I will want to give up. It’s never easy for us to talk about how our mental and emotional state was or is during the time of the TBI recovery process. It’s taken me years to finally start to come out about the “dark side” of my recovery. I used to cry just about everyday. I constantly picture how my life would be if this didn’t happen. Having no control over how I feel is torturous. I always feel “off” or “not right”. People are starting to hear more and more about athletes who have suffered concussions committing suicide. When my neurologist said that I’m showing symptoms of PTSD, my mom let heavy clouds in her mind release rain drops down her face. She was scared that I would end up like those “dead athletes”. Little did she know that I already hit that breaking point once. Although I may still experience a touch of how I felt that one day, I refuse to let myself retry what I did. I will never forget it. Silence as my eyes rolled back and I kept nodding off in a haze. Hours later light shone through the cracks of the soon to be shattered darkness. I awoke and had to either accept that it wasn’t meant to be, or think of a different approach for next time. I chose to accept that it wasn’t meant to be.

Changing so drastically in such a short period of time has been extremely negative for me. Once these changes stick around for a solid amount of time, TBI victims start to learn things. I asked a few of my concussion friends if they have learned anything as they continue through recovery. A few of the answers I received back were to enjoy the little things, how support can make a huge difference, not to take anything for granted, and that I have to be in touch with my sensitive side. A few of us have also learned that we shouldn’t judge people that seem strange. I know, myself, I view things from a totally different perspective now. Overall, what we all agreed on was how concussions are more serious than a lot of people think, and that education is key to preventing these types of injuries in the future so that others don’t have to go through what we have. The more people that are aware, the more we can make a positive difference, and that’s all that matters.

Simmons College Freshman Reflects on the Past Three Years with PCS

By Madeline Uretsky

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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.

Starting when I was four years old, sports were the most important aspect of my life. Prior to my injury, I played soccer and ice hockey, and ran track for my high school. I was extremely active and loved my teammates. When I was injured my sophomore year in an October soccer game, I knew that I would be sidelined for at least a few weeks. The thought of watching my friends play, and not being able to help my team, killed me inside. After all, it was not my fault that someone tripped me and I hit my head; I did not ask for this life-changing event.

What I had known my entire life was taken away from me in a matter of seconds. Although I had memory problems, this was something that I unfortunately could never forget. My neurosurgeon explained to me the severity of my head and neck injury at that first appointment and as a result, I had to miss the rest of the school year, and I have not been cleared to return to contact sports since. I was ordered not to look at a screen of any kind, do physical activity, homework, talk on the phone, or even draw for over four straight months. Essentially, complete “brain rest” was my prescription because I could not risk another head injury, and I needed to recover from this one.

Recovering from a brain injury is extremely exhausting, stressful, time consuming, and of course, painful work. A positive attitude and flexibility would determine the rate of my extensive recovery process. Planning ahead was never an option because my symptoms were unpredictable on any given day. I had to re-learn how to comprehend orally, to follow a conversation, to read effectively, to walk in a straight line, to catch a ball, and to do basic things around the house like turn on the stove. Now, over three years later, I can see that I am a more patient person. I had to recognize that not everything would come as easily to me, and that to be a successful person in the future, I would need to take care of myself by putting forth an effort to regain my personality, and abilities as a human being. Accepting what happened, and taking on each new challenge with an open mind were the keys to moving on, and avoiding depression.

Several months after that first appointment, I was finally allowed to use my computer. Discovering that I was not alone, and that I could be a resource for others was a climactic moment. I joined several Facebook groups, started a website, and began speaking on behalf of the Brain Injury Association of Massachusetts. I recognized that sports were not all I had to offer, and that I could use my free time helping people in similar situations. I discovered a passion for writing, public speaking, and counseling other teenagers with brain injuries, as well as their families. Telling my story, and lecturing about sports safety to doctors, athletes, and families became my mission because the devastating effects of head injuries are not well known. An opportunity to try new things, and learn about a fascinating condition became a part of my daily life, even if it was in a painful way.

I am fortunate to be alive. Thankfully, I was not paralyzed when I snapped my neck. Walking is a blessing, even if it is not dribbling a soccer ball, ice skating, or running in a race. Graduating from high school seemed impossible a few years ago but because of my determination to recover, I can proudly call myself a college student. Good health is something to be appreciated. Even though I am still suffering from Post Concussion Syndrome, there are more detrimental medical conditions. Life is hard, and does not always go as planned, but it could always be worse. Everyone has something difficult that they have to handle, and keeping an open mind when talking with people has become a conscious effort on my part because one can never know what someone else is going through. Simple things like keeping the shades open in the house, watching television, and going to the mall are gifts never to be taken for granted because at one point even just a year ago, they were not possible for me.

Learning about my brain every week at the doctor was mesmerizing and eye opening. There is much to learn about the essential organ, and this has influenced my decision to pursue a career in neurology, something I would have never considered before my injury. This past summer, I was treated 2-3 days a week and at each session, my doctors would explain the exercise, and which part of my brain it would help. Though they did not have to do this with every patient, they understood that I had an interest in the subject matter. Investing time in understanding the process and reasoning behind each treatment made appointments less agonizing. Spending time with various types of doctors has taught me that there are numerous ways to help people, and no uniform procedure for treating concussions yet.

Spending hours on Facebook groups with teenagers across the country has been an incredible experience. The fact that someone needed my help and advice was extremely rewarding. Giving someone hope, guidance, and friendship brought a new type of joy to my everyday life, filling the void of sports. Three years ago, I would not have considered myself an empathetic person. If someone were to ask me to describe myself today, compassionate and empathetic would be at the top of my list. Although thinking about that first day in my neurosurgeon’s office does not revive happy memories, it was a new beginning. I am concussed but compassionate; disabled but determined; healing but hopeful. Every experience is one to learn from, and even though mine was out of my control, I have found a way to take control of my life again.

Amidst the Pain of Post-Concussion Syndrome, PA Girl Finds Herself

{Editor’s note: I am constantly amazed when I hear the stories of people who deal with PCS in school. As someone who inherently knows the misery involved with PCS because I deal with it myself, Alyssa’s story is heartbreaking for me. I am heartened though, by her maturity beyond her age and her resilience. I know that she will be successful as she moves forward in her life –Jay}

doudsMy name is Alyssa Douds. I am 18 and live in the Pittsburgh area.

Growing up, I was a tomboy. I played basketball, volleyball, softball, and I bowled. I had many friends and always kept busy! I always pictured myself growing up going to school for volleyball and majoring in sports management. Two days before my eighth grade year in August 2009, my mom, my friends, and I went to an arcade. Who would have ever thought that going to an arcade could change your life?

The arcade game “The Vortex” fell on my head. I tried to duck, but it smashed the back of my head. Right away, I knew something was wrong. Everything was blurry and I just wanted to throw up. I didn’t even know what my name was! My mom took me straight to the Emergency room. The doctor told me that I was fine and that every hit in the head wasn’t a concussion. Two days later was my first day of eighth grade. I went to school and kept coming home every day with a headache! I felt really confused and lost walking the halls. I still wasn’t myself. My mom called my primary doctor and they referred us to the UPMC Concussion Clinic.

My appointment was 2 weeks later. Just the act of being in school for the first 2 days after my concussion made my problems even worse. I didn’t realize that using my brain that little bit could set me so far back. When I went to the Concussion Clinic, I took the ImPACT test. Then we realized how bad my injury really was. All of my scores were as low as they could possibly be. Then, my doctor tested my eyesight and balance. After that, the doctor started listing all the specialists that I needed to see.

The doctor pulled me out of school, and I had to have a home tutor who would work with me (on my good days) when I could do some school work.  The Concussion Clinic was just the beginning of my journey. Goodbye friends. Goodbye sports. Goodbye to the old Alyssa I used to be. All I wanted was to be alone in my room, in the dark, in my bed. For 9 months, I was alone in my house. It seemed like every single day I was at the doctors. It varied from my concussion doctor seeing if my ImPact scores were improving to pain management and trying to get rid of my headaches. From getting hit in the head so hard, my neck had twisted vertebras, and dozens of trigger points. I had eye dis-convergence, meaning that my eyes wouldn’t stay focused together when I tried to look at something, so I had to do eye therapy!

My balance was off, so I had to go to vestibular therapy multiple times a week. Then, on top of all those doctors, I had a neurologist overlooking all of it and treating my occipital nerve damage in my head. My home tutor would come before or after appointments 2-3 times a week, only for as long as I could handle. Sometimes that would be 10 minutes. I missed out: I missed out on friends. I missed out on school activities. I missed out on sports. Seeing my parents learn, and try to understand what was going on made me feel even worse. Seeing your parents cry over you is a huge disappointment. I felt as if I was letting them down. I hated my sister telling my 3 year old niece to “be quiet”, or “leave your aunt alone she has a headache”. It’s something no one in my life knew anything about. As time went on and I wasn’t getting better, it felt like doctors were questioning me; like I was lying to them.

Multiple months went on and nothing was getting better. All of my medicines were just making me worse, causing more problems. I was losing more and more friends. I felt like everybody forgot about me. Doctors thought I would never get better and I thought that I was going to live the rest of my life trapped in my room feeling lost. I couldn’t even go to the mall just to walk around because the lights and movement of everything around me just made everything worse.

At night, I would sit there and wonder if I would wake back up. Why am I even alive? I would rather be dead than deal with this. Who wants to live this way? As time went by, my headaches started to fade. I was released to go back to school for a couple of hours each day. My ImPACT scores were still not as high as they should be, though. My teachers could still see I didn’t completely comprehend what I was learning and something still wasn’t right. I would stay after school every single day trying to get help on my work.

I finally went to see a psychologist who teamed up with a doctor from California. The doctors came in to do a functional MRI where I had to sit in a MRI machine with goggles on looking at a computer screen doing simple tasks and simple math problems. That way, they could test what parts of my brain were being used. They found that my working memory was permanently damaged. That’s why learning new things, doing multiple steps, and backtracking is so difficult for me. I was excused on all state testing as well as all the mandatory testing everyone needed to move on to high school. That really held me back from everything in school and what I wanted for my future plans.

In 9th grade, I was able to go back to school full time. People talked, and talked, and talked about me which made things a lot harder. I had to ignore all the rumors and realize who was really there for me. It was hard adjusting to just waking up going to school!

In May 2013, my junior year, I was sitting in school, tilted my head back, and hit my head off the corner of the wall. It wasn’t even that hard of a hit. Since I had this concussion before that never fully healed, all my symptoms came back again. Right away, my head was hurting and I knew something was wrong. The school nurse sent me straight to the emergency room. Since then, I’ve lived each day with the same headache that will not go away. I started missing a lot of school. My classmates would comment on why I wasn’t in school most of the time.

More medicines still were not fixing anything, so I started to get more treatments. I tried acupuncture three times, but it didn’t work. I had a nerve branch block on my right side. That didn’t work. I had 36 nerve blocks through my head. Those just made my head hurt even more. I’ve had way over 100 trigger point injections in my neck, yet they still come back. I would put myself in the emergency room to get “migraine cocktails” to try to get relief. My images were not showing anything: no bleeding or anything else on my brain, so what could it be? Doctors were at a loss, and had nothing else to do, so my parents took me to Buffalo, NY, for more options. There, they said I needed neuro-chiropractic work done.

I went through 4 chiropractors until one could finally help me. I still to this day get nerve blocks, and get chiropractic care for my neck. I was put in exertion therapy to try to get physically active again while dealing with my headaches, but medicines were making my heart rate go too high and my blood-pressure go too low. What does it take for me to finally leave all this in my past?

The day I never wanted to be here rose upon me: senior day for basketball. I couldn’t stop crying. I always pictured my parents walking me out and my family would be there to support me, but I couldn’t play. That was disappointing. My coach and team knew everything that was going on with me, but she still gave me a jersey to be part of the team and help keep my spirits up. I would sit on the bench with earplugs in and sunglasses on because the movement, noise, and lights bothered me. Other students and even the parents of players from other teams would point at me. I realized they were talking about me but no one knew what I was dealing with.

At our basketball banquet, my coach gave a speech and presented me with the courage award, which was a really big deal to my parents and I! My teachers in school didn’t even understand me. My teachers would call me out in front of the whole class, which embarrassed me. Teachers would yell at me saying they already explained to me what I had to do. They didn’t realize how easily I forgot when, in reality, part of my memory isn’t working!! I don’t want to stand out and let people know I am “different” or have problems. I wish I could wear my sunglasses everywhere without people judging me. I didn’t want anyone to know what was going on with me or that I did not have to take tests like the rest of them. It all started to bother me. It bothered me more than it should have. I was so stressed out about dealing with a headache every day- no matter what. Where was I going to go to college? What would I major in? No one in my school was helping me like they were supposed to. All I had was my mom.

I was depressed about everything that I go through every single day. No one can truly understand me, wake up, and see the days the way I see them.

My body started fighting my body. Strands of my hair were just falling out. My hair got really thin and it was starting to get very noticeable that I was losing my hair. I had a weird rash all over my arms, and my weight kept dropping uncontrollably. My head hurts so badly that I can’t just put my head down to sleep. Then, I can’t function the next day.

Graduation day was finally here and it felt like the biggest accomplishment. I struggled so much to get to this point. I lost so much in my life and I could not wait to get out of that school. People who were supposed to love me were using my “brain damage” against me. Girls were making fun of my weight, constantly dealing with teachers who didn’t understand- I just couldn’t wait to leave!

Now, I go to a therapist and talk once a week about depression. I’ve learned to be proud of myself and the issues I have. I shared my story for the first time in front of school nurses and coaches with the PA BrainSTEPS team because people do not realize how important and serious a hit in the head can be, whether it’s sports related or not. The summer after graduation, I requested a meeting with our superintendent and Special Education department to let them know how I was treated. Hopefully, by speaking up, other students can receive more help and not go through what I had to. I still get headaches every single day and feel sad sometimes, but I learned to hide it and keep moving forward. I will never be that Alyssa I used to be, though, and it will be a long road to recovery. Five years later, I still go doctor to doctor looking for help. I may look normal on the outside, but on the inside is a different story. Thats the biggest problem with head injuries! It’s like I almost wear makeup and get all dressed up every day and use it as my mask. I still have some flashbacks of everything happening to me.

The doctors that I have now are like my best friends! My mom gives me Imitrex shots as needed and we are still looking for other treatment options. I will be starting school at a career institute with extra help and assistive technology on my computer. Eye doctors have made me special tinted magnifying glasses for reading and on the computer as well as special darker lenses in sunglasses.

I’m not the old Alyssa I once was or wanted to be, but I have found myself.

I’m going to try to get signed with a modeling agency, but most importantly continue to raise awareness and help people with brain injuries. I have a couple of friends and that’s all I need. The most important thing to me is family because they will always be there through everything.

I have found that the point is this: You can’t control what happens in your life and you have to believe that things happen for a reason. As hard as it may be to accept your life changing, this is your life still, so let it make you a better person and make the best of it. It’s very lonely and no one understands unless they have been through it.

Learn to be proud and remember to love yourself. No matter how you feel, put a brave face on, get up, get ready, and NEVER give up.

A Letter to Myself, Two Years Ago

{Editor’s note: Alicia Jensen is a freshman at Towson University. She was diagnosed with post-concussion syndrome her sophomore year of high school. After writing this, she read it and sat on it. She realized that it reminded her of Luka Carfagna’s wonderful piece. I told Alicia to hand it over and that it was important to publish it anyway. –Jay}

By Alicia Jensen

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Alicia, second from right 

Dear Alicia,

You’re in pain. I can feel it now, and I know exactly where you are: Probably laying in bed, in the dark, alone, praying and wishing for the pain of PCS to go away. You had a tough day at school today, huh? head on the desk, waiting for the bell to ring just so that you can go to another one for 52 minutes. I wish I could tell you that tomorrow will be easier and that you’ll be in less pain, but I can’t. Continue reading

An Open Letter to Wes

By Jay Fraga
A3~0

Wes, I turned 42 this summer. The last four years have been hard.

Before I became this guy, I was a meat-eating, hard-charging, will-powered machine of a person. I believed that I could do anything. I still kind of believe that I can do anything. I raced bikes and loved it. The end came with what was my 8th concussion on paper. I know I’ve had many more than that. I’m sure you know what I mean.

Lots of pundits are out there discussing your well-being and what you should do. A lot of them are well-intentioned, but don’t speak from experience. Continue reading

Graduating NJ HS Senior’s Concussion Complicates The End of Her School Year

{Editor’s note: I can’t think of any time that’s a good one to suffer a concussion and ensuing symptoms, but the crunch time leading up to high school graduation seems exceptionally brutal. Becca echoes the uncertainty that all of us who suffer from PCS feel. Her positivity, however, is what will lead her through it. –Jay}

beccaBy Becca Earnest

Wednesday April 30th, 2014.

My accident isn’t due to an athletic injury, although I did play my share of softball, field hockey, and a teeny bit of soccer when I was young. I didn’t hit my head in a brave, heroic type of way how most athletes suffer their concussions. Although I do remember very well the defeated feeling you receive when you’re told you’re not allowed to go back to playing the sport you’re most passionate about. I was on the verge of tearing my rotator cuff my freshman year of high school playing for the lady lions softball and I was told that if I was to continue playing and continuing to wear out my arm, I would probably need surgery and have to deal with that injury for the rest of my life. But that’s beside the point, I just wanted to say that I identify with that loss and kudos to those of you that turned that loss into a gain and are helping other players out. You’re the realest of the MVPs out there.

My accident that resulted in my head injury was from a simple little fender bender on my way to school one morning. It was 7:30 and like always, I was running late. Continue reading