Simmons College Freshman Reflects on the Past Three Years with PCS

By Madeline Uretsky


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


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

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

Joanne Stankos, Mother of Twelve Year Old Taekwondo Black Belt Jaden, Tells “Jaden’s Story”

{Editor’s note: This piece speaks for itself, but I just wanted to mention how proud I am of Jaden and his family for the work they are doing during their journey. Jaden, you’re an impressive young man and a true warrior. I hope that I get a chance to meet you and your Mom at some point! –Jay}

By Joanne Stankos


This is Jaden’s story.  His story of living with Post Concussion Syndrome.  He would write this on his own if he could, but he can’t.  His story is like so many other suffering with PCS.  But his takes a slightly different turn.  But I am getting ahead of myself here.  I am his mom.  I hope I do him justice by telling his story.  He will definitely let me know.

July 2, 2013.  That is when Jaden’s life changed.  I can still hear the deafening sound of the arena going silent when it happened.  It was the only time I have cried immediately upon seeing Jaden get kicked.  I knew that this time was different.  Little did I know how different.   We had just entered into the world of PCS. Continue reading

Get Up: A Letter to a Young Person Recovering From a Concussion

{Editor’s note: I am thrilled to share Lindsey’s piece today on The Knockout Project. In the fog of post-concussion syndrome, it is easy to lose one’s way. Lindsey’s words are a most important compass for anyone who considers themselves lost in this journey. They also serve as a pertinent warning to those who might unknowingly venture down this path.  –Jay}

By LB Carfagna

Get up.crosby-get-up1

Even if you can’t get up physically, get up in your mind. Stand up straight. Look the world in the eye. Even if you’re wearing sunglasses. You matter. Your life isn’t over. It’s just different now. You’ll have a chance to mourn what was, trust me. Right now might not be that moment, if you’re anything like me. Crying makes the headaches worse. (It’s ok to cry though.) Right now, you just have to believe. Continue reading

A Concussion Photo Essay: This Is My Story

By Jay Fraga

Once, there was a little boy. The boy loved to ride motorcycles with his Father. The boy was transfixed with speed and g-forces and devices with two wheels.


The boy dreamed of two-wheeled heroes; of men with nicknames like, “Hurricane”. Continue reading

The 504 Plan: School Accommodations and Protections for Your Concussed Student Athlete

By Alicia Jensen

After student athletes suffer a concussion, the first thing that pops into their heads is, “When can I play again?” What many might not realize at first is that the effects of concussions are way more than just physical in nature. Concussions mentally and cognitively impair that athlete either along with the physical symptoms or even after they have been cleared to go back on the field.

Many student athletes like me who are diagnosed with Post-Concussion Syndrome may notice some cognitive symptoms as they return back to school. Symptoms such as memory loss, confusion, a short attention span, and the terrible list goes on and on. Continue reading

A Rising Tide Floats All Boats; A Falling Tide Drops Them All On The Rocks


We’ve all taken our eyes off the ball

By: Jay Fraga

While the sports world stands trivially transfixed with Richard Sherman’s NFC Championship post-game interview, lawyers on both sides of the recently-denied-for-preliminary-approval NFL Concussion Settlement scurry around in relative obscurity. With the sheer outrage mustered toward Sherman’s antics, one would think that America’s Game is being threatened. Once again, we’re proving as a nation that we are easily distracted.

America’s Game IS being threatened- but it’s not being threatened by Richard Sherman’s interview decorum. America’s Game is being threatened by a sub-par settlement, chiseled out by the bean counters and face savers at the NFL as well as a handful of plaintiff attorneys, who will take a sizeable sum of the bounty for their own coffers rather than forward it to deserving players. Worse yet, the settlement is based on troublesome language that calls to question just which players might qualify for medical benefits under it (for more detail on that, Patrick Hruby’s January 14th article is good reading). Continue reading