Posted: June 17, 2020

My family members filed into the house, one after another, greeting each other with hugs and smiles. The house was loud, filled with laughter and conversation between cousins catching up, grandparents checking in and siblings making fun of each other. My family gathered around the Thanksgiving table to celebrate the privilege of being in one place together and enjoy each other’s company.

But I couldn’t.

The sounds of their laughter pierced my ears. The thud of their footsteps vibrated my skull. The clanking of forks and knives resembled nails on a chalkboard. The only thing that I could do to escape this, my family, the thing that means the most to me in life, was to curl up in bed in a dark room, holding my head in my hands. These were the moments where my mind went places where I wish they never went. For the first time in my life the idea of killing myself seemed liked a better alternative to living life in constant suffering. I cried. Uncontrollably. Thinking about all that felt so far away from me now. My friends, my soccer career, my education, my family. I was told that feeling more emotional and sad was part of Post-Concussion Syndrome, but nothing could have prepared me for what I was actually going to experience.

I’m the kind of person who is always in a genuinely great mood. I couldn’t turn off a smile if I tried. I’m always making jokes. It’s a part of me that I really love, something that truly defines me. But in this moment, it felt like every smile, every laugh and every joke was the biggest lie. For months, I tried to put on this façade that I was still the same Noah I had always been – believe me, I tried – but after my vision went black on that field, my life was turned upside down.

The actual play happened so quickly. Having watched the video replay hundreds of times since the injury, it’s hard to figure out what I actually remember and what I think I remember. My teammates who were closest to the play describe my head being whipped back like someone hitting a bobblehead. After the initial contact occurred, they recall blood gushing out the top of my head, seeping into the Parsons turf. An Elon player ran full speed into me and the only way his speed was reduced was his knee slamming into my skull.

Being significantly undersized and lacking God-given athleticism and speed for a D1 goalkeeper has led me to develop an aggressive playing style, always wearing my heart on my sleeve and making decisions without fear. When that bouncing ball came in, I didn’t have to think twice about coming out for a play that even many goalies at the highest level would avoid. That bouncing ball was the last thing I saw before I woke up to the blurry faces of my trainer and teammate standing over me and saying my name.

“I’m fine, I’m fine,” I drastically slurred as I felt a surging need to vomit. “I’m fine, let me up.”

Clearly, we weren’t on the same page and I was forced to stay on the floor and told to relax for a second. Eventually, my trainer and coach helped me over to the bench where I had an examination and told the trainer to stitch me up for the second half of the game.

A few minutes later, I passed out again for about 15 seconds, woke up, touched my trainer’s arm and said, “Get me to a hospital. Now.”

These last six months since my concussion have been an extremely volatile and dark time for me emotionally. I always thought that people who went through hard times emotionally were soft or ungrateful. How could a person with such a great life have anything to complain about?

As my symptoms progressed, I felt like I lived in a state of hangover. I was constantly nauseous, dizzy and had a headache. I couldn’t hang out with my teammates in our living room because the combination of their voices and the TV was too much to handle. I wasn’t able to watch my team play the remaining 12 games of the season because the lights on the field and the music in the locker room felt like I was being tortured. I wasn’t able to attend class because when I thought about more than one thing at once my brain simply hurt. But the physical symptoms had a source. I knew my head hurt because I was kicked and had 18 staples. It was the anxiety and the depression that I couldn’t understand. It was the fact that I would wake up every morning with a pit in my stomach and an overwhelming sense of doom that I just could not understand. The worst part about it all was the fact this was not a visible injury. It wasn’t like a broken arm that I could see. That could be proven with x-rays, that the doctor can put into a cast and tell me how long it will take to heal.

There is no rehab. There is no clear diagnosis. There is no timeline. The only thing that I could do was sit in dark rooms and cry about everything that was taken away from me, from my sport to my identity. The only time that I felt some relief from the constant suffering was when I drank.

At least for a couple hours, my headache disappeared, and I forgot that I was in constant pain. After a night of drinking and my hangover state returned the following morning, I returned back to my regular thought process: If I jump over my fifth-story fire escape, will all my pain and suffering go away?

I never got that close to the fire escape, but even having those fleeting thoughts is scary enough. But when I experienced these dark thoughts and moments of suffering, I later realized the good in what it brought out in me. Prior to this injury, soccer was my main priority in life. What happened to me on that field and in the six months that followed was the worst thing that’s ever happened to me, but also the best. Having so much time away from the game changed my point of view. Feeling constantly anxious and depressed altered my perspective. I realized that life isn’t always about what is directly in front of me. I stopped thinking like soccer was my end-all, be-all, my sole purpose, and my only source of happiness, and I started treating it like a passion that filled me but did not define me.

There is no shame in admitting that sometimes things get so hard you can’t handle it on your own. If anyone reading this is going through a rough period in their life, sport related or not, I encourage you to seek help from your loved ones, because some things in life are too difficult to take on by yourself. Without my close friends, my teammates, my family and my coaching staff supporting me, I don’t think that I would be here today. That doesn’t make you soft or ungrateful, but it makes you human.

If I could take it back, I wouldn’t have gone out for that ball, but I will always be grateful for what the time since that injury has taught me and how it has changed me.

Suicide is preventable and help is available. If you are concerned that someone in your life may be suicidal, the five #BeThe1To steps are simple actions anyone can take to help someone in crisis. If you are struggling to cope and would like some emotional support, call the 988 Suicide & Crisis Lifeline at 988 to connect with a trained counselor. It’s free, confidential, and available to everyone in the United States. You do not have to be suicidal to call. If you’re not comfortable talking on the phone, consider using the Lifeline Crisis Chat.

Posted: June 9, 2020

Episode 1: Hello!

Episode 2: Mindset

Episode 3: Noise & Light Sensitivity

Episode 4: Staying Social

Episode 5: Coping with Loss

Episode 6: Sleep Issues

Episode 7: Exercise

Episode 8: Vision

Posted: April 6, 2020

At a time when social distancing and periods of isolation have become a widespread obstacle in the daily life of so many, Gracie Hussey of Memphis, TN is an expert on how to cope.

Gracie sustained her first concussion when she was just 8 years old and went on to suffer several additional concussions throughout her competitive youth soccer career. As she transitioned from middle school to high school, Gracie attempted to hide and fight through worsening Post-Concussion Syndrome symptoms. She suffered from headaches, sensitivity to light, sensitivity to smell, memory issues, and vision difficulties that interfered with her schoolwork and daily life. Eventually, Gracie’s symptoms became so severe she was forced to homeschool for a semester in 10th grade.

Now a college student at the University of Alabama, Gracie was told not to return to campus after spring break to help stop the spread of Coronavirus. For CLF’s webinar, Managing PCS in the Time of Coronavirus, Gracie shared her perspective on living through new social distancing measures and how the experience is similar to periods of inactivity and isolation she dealt with when her PCS symptoms were at their worst. One of the best strategies, Gracie says, is keeping a routine and taking breaks:

“Staying active and trying to keep my routine as normal as possible, even though I’m not allowed to go anywhere besides walking around my neighborhood and working out, has honestly been my savior because I haven’t gotten into the cycle of just lying in a dark room because my head hurts.”

Like so many forced to stay home from school or work, Gracie was concerned the PCS symptoms she’d worked to keep in check would make a comeback. The knowledge that she has conquered her symptoms through discipline, routine, and exercise countless times in the past helps Gracie remain hopeful.

Gracie has been an advocate for concussion safety with the Concussion Legacy Foundation since 2015. Below, Gracie shares her story for the Concussion Legacy Foundation’s Safer Soccer campaign.

Posted: June 13, 2019

As time went on, my headaches became rather unbearable and I could no longer tolerate gymnastics. So, 10 days after the initial incident, we went to the emergency room where it was confirmed that I did indeed have a concussion and could be at risk of developing Post-Concussion Syndrome (PCS). At that point we knew something more serious was going on than we thought and took all precautions.

With my headaches persisting and new sensitivities to light, sound, temperature and motion, I spent the next couple of months sleeping a lot, staying up in my room, and isolating myself from the outside world. I wasn’t quite sure what was going on, or what to do. We started to search for more doctors who could give us advice or guidance on treatments, as well as more information about concussions and PCS. Much of the time we got conflicting information and opposing advice. I started to realize not many people knew exactly what was going on in my brain, or what was causing my continued head and neck pain.

I had to miss starting high school for the first month, which is when you form most of your new friendships. I had a short period of time after seeing an acupuncturist when I felt better and returned to school, but the headaches soon returned. A few months after that, we were referred to a pain clinic as my headaches continued and I was medically deteriorating. We were hoping for a miracle.

The pain rehab program ended up doing much more harm than good because they did not understand PCS. The theory behind this program is to push through your pain, but it pushed me so far above my threshold that it ended up leaving me in a very bad place for a very long time. I had trouble just walking around school and got winded going up and down stairs. I spent most of the time at school in the nurses or guidance offices.

Deciding to Leave School

I was pushed not to leave school early, would only be allowed short breaks, and was strongly encouraged to take a computer technology class even when screen time was so difficult for me. As an athlete, I was used to being in the gym for many hours several days a week and learning to push through fears and pain on a regular basis. I could not understand why this recovery was so hard for me.

On the advice of the pain rehab program, I even went on a cross country flight to Hawaii as a “therapeutic” getaway. Neither I nor my family felt comfortable with the idea, but we tried anyway. With all the stimulation, decreased oxygen levels on the plane, crowds, loud noises, and lengthy plane ride it proved to be so far over my activity threshold that it sent me into a downward spiral that took me over a year to get out of. It was traumatic and not enjoyable at all. While there, my pain got so unbearable, that for the first time I felt truly hopeless and like I could no longer live this way.

I spent the next several months in and out of school, with my pain still worsening. I tried several different medications, many of which had scary side effects that were even worse than my symptoms. We investigated a multitude of treatments and everything under the sun to try and get some relief, even post-traumatic stress therapies. Car rides made me sick, but staying home was isolating. There were times when I would scream out loud for help due to the pain and other times I would go into my basement and scream into a pillow. I would refuse to go near a TV or sounds, even music or people talking. I would refuse to leave the house. The pain and distress escalated to the point where I was becoming someone I didn’t even recognize.

I could not accept what was happening to me. I felt like no one could help me, none of the treatments were working, and every doctor would say to “give it time,” but I felt like I could barely make it through each day. It was an everyday battle fighting negative thoughts and trying to stay positive. I was angry and irritable at times, and for a while, I could not see a future for myself.

The more I went to school, the worse my headaches got. After a while it got to the point where I was present at school, but not participating. That’s when we decided I should stop going, and I ended up leaving my freshman year and completing the work at home in small doses over the summer. I missed out on the entire high school experience. My friends from home and the gym started to forget about me and my coach didn’t understand how my recovery could possibly be taking so long.

A Burst of Hope

One night, I believe I got a gift from God. My mom and I were researching when we stumbled across the Concussion Legacy Foundation website, where we found stories of kids just like me. Before then, I had no idea that a concussion could last so long or be so severe. I was insistent that it couldn’t “just” be a concussion, and something more serious had to be going on.

The website had so much valuable information and we learned so much about what was happening to me, and that it was normal. It gave me a burst of hope. That’s also when we found Dr. Cantu. Thanks to Dr. Cantu, I was diagnosed with “dysautonomia,” a common PCS symptom that went unnoticed by several doctors. It helped to explain a lot of mysterious symptoms.

Dysautonomia is a term that describes what happens when your autonomic nervous system becomes dysregulated. This affected my heart rate, blood pressure, and temperature control and explained why I was having so much trouble with any physical activity. It also gave me flushing and burning of my face and hot and cold spells.

I had to be put on a Beta Blocker to control my blood pressure and use ice packs on my head, cheeks and even sometimes my feet to keep me cool! Since your brain controls all of your body functions, really anything can be affected by a concussion. I have also had issues with my endocrine system which controls hormones. My cortisol levels increased due to stress, which can contribute to weight gain and make other symptoms worse.

The truth about PCS is that there aren’t enough doctors, clinicians, coaches or parents that fully understand it. After discovering the Concussion Legacy Foundation website, Dr. Cantu, and the Headache Clinic at Boston Children’s Hospital, we could finally start the recovery process appropriately.

Tallying My Symptoms and Treatments

During this process I have celebrated 2 birthdays, missed most of freshman year and all of sophomore year. I have seen over 45 different doctors/ medical personnel, including four acupuncturists, six PT’s, five neurologists, one neurosurgeon, one hypnotist, five psychologists, one psychiatrist, four orthopedists, two cardiologists, one endocrinologist, one craniosacral therapist, four massage therapists, three pediatricians, three chiropractors, and two vision therapists. This does not include medical personnel from a few hospital stays! I have received nearly 200 various painful injections (not including acupuncture which does not hurt!) to my forehead, head, temples, neck, shoulders, and the bridge of my nose.

Note: CLF does not endorse all the therapies described above. Consult your doctor for a personalized treatment plan.

My Recovery and Message to Others

And finally, the good news. About a year after my injury, my headaches started to get less severe. It appeared the treatments were helping. That was my turning point. And then, a few months later, what really pushed me over the edge in my recovery was when I began seeing a Manual Physical Therapist. He was able to feel things that do not appear on any MRI. He was able to gently correct a misalignment of my skull and neck joints that no one else had discovered. I am now a year and a half post injury and feeling better every day. I still have a long road ahead to achieve full recovery and return to school and sports, but I can finally see the finish line and I want others to know that it can happen for them too!

 

The reason I am sharing my story, and all of my hardships with PCS, is not to scare, but rather to spread awareness of how serious it can be. Before I had PCS myself, I knew nothing about concussions and didn’t know PCS was even a “thing” and now it has consumed my life for nearly two years. PCS affects all aspects of your life and your entire family. Few people fully understand this injury, because it’s invisible. At school kids would say things like “concussions can’t last that long,” or “I had a concussion and it only lasted a couple days,” or “you’re so lucky you get to miss school.” I had some of my friends and acquaintances wonder if I was faking or exaggerating. Classmates would stare at me. Little did they know what my life was really like.

 

 

My best advice for anyone going through this is to keep trying until you find something that works for you, never give up hope, and always trust and follow your instincts. You may need to stretch out of your comfort zone but don’t push yourself too hard. Seeking out others who know what you are experiencing is important. Whatever your faith is, don’t stop believing, even if you have moments of doubt. I received over 100 cards, letters and gifts from family, friends and a nation-wide prayer group which was a big comfort. PCS can be overcome and now my focus is on helping as many other people as possible.

Posted: March 27, 2019

I started playing hockey at the age of five, doing local clinics, playing with local travel teams, and doing 3 on 3’s with my cousin. I fell in love with hockey because it takes not only great technique but a great mind to succeed. Hockey is a thinking sport where you must be thinking ahead to the next play before you can execute the current play. Through my own experiences and by learning from my teammates, hockey has made me a more dignified person, a better problem solver, and more understanding.

On a Sunday night in July 2018, though, my hockey career took a pause. One mammoth blow to the head on one play turned my life upside down. That’s why this past year has been the hardest of my life. And that’s why by telling my story, I hope I can provide some hope to other kids going through the same thing. Here’s how it happened.

There was captain’s practice at my High School. There was a coach present, but college kids were running it. At the end of practice, the college kids instructed that we do a non-contact 3-on-3 drill. In the last minute of practice, the college kids blew the whistle and I went in. There were upcoming freshmen on the team and I wanted to show them I was one of the nice kids and to help them learn and develop. I received the puck and dangled through two defenders and looked to pass to a freshman on the post. Out of the corner of my eye I saw a teammate charging at me halfway across the ice. I thought he was just going for the puck, and then BOOM. I was hit by what felt like a truck and suffered a double-concussion. The first came from the whiplash, then the second from my head hitting the ice. I saw stars and was very dizzy and my mind has felt cloudy ever since. I had no idea what was happening and stumbled back up and felt like I was going to throw up off the ice.

I was out for a couple of weeks after that day. I missed five practices and a camp, and started to feel pressure to practice again. I wasn’t completely symptom-free but felt close enough to normal to play again. But practicing brought on a headache and I stopped after that.

I tried to go about my normal life. I was hanging out with friends, going to school, exercising, and driving. I was trying to be a normal teenager. But my symptoms made that impossible. It got to a point where I was throwing up in school because I was trying to do math problems and then throwing up again at home because I was trying to catch up on the work I couldn’t do in school.

Eight months later, I am still symptomatic and have major neck problems. My memory has suffered since the incident. Before the injury, I was doing great in school, had a big group of friends, and was a tier-1 AAA hockey player with high hopes for playing college hockey. Since the injury, I have not been able to comprehend or learn new concepts at school, hang out with friends, or even have Thanksgiving dinner without my head pounding. My head feels like Niagara Falls is rushing through it.

I had to take a break from school, my friends, and hockey to recover. During that time, I’ve picked up some strategies to help deal with my headaches and nausea. I put a blindfold on when my symptoms flare up to help subdue them for parts of the day. Screens make my symptoms worse, so I limit my phone time and stopped watching TV. Busy areas only make things worse, so I avoid them now. And as much as I want to be an athlete again, I had to stop trying to exercise to give my brain a break.

Is it working? A little. I’ve seen progress and hope my sacrifices will end up curing my concussion for good.

While I’ve dealt with my concussion, my dad has been battling Stage 4 Pancreatic Cancer, lost his job, and is bed bound in chemotherapy. Hell is an understatement for what I’m going through. While this concussion has drastically changed my life, I know that all I can do is have hope. I know I will get better and have hope that I’ll be healthy and happy one day, hope that I’ll be very physically fit again, and hope of attending a good school and playing college hockey. I have hope that my dad will have energy again and be cured of his cancer. And I hope my story can show kids who are battling a concussion how things might seem tough, but if you take the time to recover it will all get better eventually.

Posted: July 25, 2018

Despite wanting to return to training, Schoutens battled nausea, headaches, light sensitivity, and emotional instability that made training impossible. But after taking the time to recover fully, Schoutens returned to the ice for the 2016-2017 season healthy and determined to reach the 2018 Winter Olympics in Korea. Schoutens’ remarkable drive to realize her Olympic dreams helped her overcome a late start to the 2016-2017 season and carried her all the way to Pyeongchang, where she earned a bronze medal in the Team Pursuit event.

Now, Schoutens is sharing her experience and joining the Concussion Legacy Foundation to help athletes who are struggling to cope with their concussions. Read on for an Olympic perspective on the hardest part of recovering from PCS, seeing an elite teammate struggle with a concussion, and what athletes at every level can do to navigate these challenges.

You suffered a pretty serious concussion back in 2015. How much did you know about concussions before then?

Not enough. I didn’t realize that it was a potential problem in my sport. I must have been around people that had concussions, especially in short track where there are more falls, but it just wasn’t on my radar. I always thought of contact sports first. Luckily it was on my coach’s radar.

I fell in a really uneventful way. I slipped in the turn and slammed into the pads, just like you’re taught to do as a kid: with your back first in a seated position. That was all completely textbook. At first, I had no symptoms at all – I finished the workout, did another workout, and went to work.

The next morning, I woke up early and I threw up. I tried to fall asleep, but I kept throwing up. I texted my coach and told him “I must have food poisoning or I’m just sick. I can’t come train.” He was worried because I had fallen the day before so he sent someone over to take me to the hospital. I was diagnosed with a concussion there. It never occurred to me that the nausea could have been from a concussion.

Schoutens (left) celebrating with her Team Pursuit teammates Mia Mangenello, Brittany Bowe, and Heather Bergsma in Pyeongchang after winning bronze.

No concussion experience and recovery are exactly alike. What was the most difficult part for you and what made the biggest difference in your recovery?

The early phase was easier, even though I was really sick – nausea, headaches, locked in a dark room kind of thing. There was a lot of empathy and understanding as to why I couldn’t come to practice and I couldn’t train.

Then there came this whole phase where I kept getting knocked back down in the recovery process when I thought I was ready to go. It became really frustrating – feeling like the recovery was dragging on forever. I didn’t know how to resume training without taking more risks. On top of that frustration, I had some cognitive symptoms like sadness and emotional instability. I didn’t know what more I should be doing to get better and I thought that was way harder.

So, I think a couple months later when I still was not over the concussion was a lot harder than the acute phase.

What were some things you didn’t know about concussions before you had one?

I didn’t really realize that mental or emotional symptoms can be a part of it. For me, after 4 or 5 months, it got really tough mentally to keep being patient and stay sane.

I also had never experienced the difference between [orthopedic] injuries and concussions. Not long after I got injured a teammate broke his arm and he couldn’t skate either. But the difference was, soon after his injury, he was able to go watch practice and hang out and cheer people on. I was so jealous of that because I couldn’t even do that. I couldn’t have that social interaction and support my teammates because I was stuck at home. I always felt like with some other injuries that are more visible or more physical you can focus on something else for a little while – like make a lot of progress in school or go on a vacation or go home. With a concussion, you can’t do anything at all and that was what was so tough about it.

What do you wish someone had told you while you were recovering from your concussion?

Focusing on recovery is very important. At first, they told me not to train for a week and I was like—ok, that’s pretty bad. I had no idea how much worse it was about to get. There was a point about 4 months in where we finally decided to give up on my season and that was just a load off my shoulders. I could just do nothing at all and focus on my recovery and not worry about skating for a bit.

I talked to a sports psychologist a lot throughout. One time he put me in touch with another athlete of his who had had a concussion. We just met up and had a coffee and she told me about her experience with her concussion. That was very helpful to me. Having that connection with her and being able to text her saying, ‘Oh I’m still not better. How are you?’ That was really nice.

I also did a good job of tracking my symptoms. I have a whole collection of sheets where I tracked my symptoms so we were able to see some kind of trend and progress and that was helpful.

Finally, setting small goals for things other than skating really helped me. Like ‘Oh today I’m going to floss my teeth’ and that would be my goal for the day. If I did it, I could check it off the list and say I had at least accomplished something.

Schoutens’ first skate after months of tracking her concussion symptoms in a notebook.

 

Your teammate Brittany Bowe also suffered a concussion in 2016. Did you ever get a chance to talk about the experience with her?

We’re around each other all the time so we definitely shared some experiences. I had just recovered and made my initial comeback when it happened to her. We had a very similar timeline – concussion in the early season, trying to come back, and having recurring symptoms. It was very similar to my experience. It’s pretty special that we were eventually on a team together and got that bronze medal after we both had very similar struggles leading up to the Olympics.

How do you think speed skating in general views concussions?

I think they are taken seriously now. What happened to me and Brittany gave people a reminder that concussions don’t only happen in short track and that concussions can be very, very serious.

Do you think Olympic athletes are properly informed about the risks of head trauma?

I think they are taken seriously now. What happened to me and Brittany gave people a reminder that concussions don’t only happen in short track and that concussions can be very, very serious.

Do you think Olympic athletes are properly informed about the risks of head trauma?

I think at my level, yes. We have so many resources being on the national team. I had a trainer that was available to drive me to the hospital the same day I started showing signs of a concussion and saw a doctor that was affiliated with US Speed Skating and could give direct feedback to my coaches.

But if you’re trying to get to the national level and you’re maybe five years old and you’re just at your local team with your local coach, maybe people don’t fully understand that a concussion is an injury that’s very serious. Not everyone has the same support we do, so I think that, for those kids that are trying to get to the national level, awareness is probably not as great.

So, what I would say to those kids is, even if you don’t feel outside pressure, you have to get over that pressure that you feel within yourself.  I feel like that’s a very big hurdle to overcome to finally give yourself time to recover and put that before any other goal you have.

How important do you think it is for elite athletes to set a good example when it comes to dealing with concussions?

I think that’s really important. If I was a 15-year-old with a concussion and I was getting ready for Junior Nationals or another big competition, I might want to ignore the symptoms of a concussion and be quiet about it and act like it never happened. But if I see someone at a higher level going through the same thing and stressing how important it is to focus on recovery then I maybe would feel more supported and be able to make the right decision.

How do you hope to use your role as a CLF Team Up Against Concussions Ambassador to impact your sport?

I think both my positions – as a Team Up Against Concussions Ambassador and member of the US Speedskating Athletes’ Advisory Council – give me an approachable, role model position where anyone could feel like I’m there to look out for them and help them.

I hope that I can use my reach within sports to let people know that I had a concussion and that it ended well after I took it seriously. I hope that everyone feels like they can reach out to me if they have any questions or they can use what happened to me as guidance for making their own decisions and feel like they aren’t alone in their concussion struggles.

What’s next for you?

I’m going to continue to speed skate in Salt Lake City. I was in medical school before I took a break to get ready for the Olympics so I’m also resuming medical school. I’m really looking forward to doing some research with the orthopedics department in Utah.

Posted: May 25, 2018

My story

​​On December 15, 2015, I hit my head on the granite counter top while picking up my homework off the kitchen floor. There was an immediate onset of headaches. After a couple of days visiting the school nurse, it was determined I may have a concussion and should see my doctor. What started out as a likely concussion escalated over time to much more. Eventually, I would end up seeing some of the best doctors the world has to offer at both The Floating Hospital for Children at Tufts Medical Center and Boston Children’s Hospital.

My health significantly deteriorated between December 2015 and March 2016 with no real known explanation other than the concussion. School, work, and activities were stripped away, school days were reduced, and homework was no longer an option, yet my health continued to worsen. Following a visit to my Ophthalmologist at the end of March 2016, he found significant swelling of the optic nerve and fluid-filled optic discs, further launching a myriad of testing. It wasn’t until early April 2016 when my growing medical team found a blood clot at the base of my sagittal sinus vein. To quote one of my physicians, “it was the perfect storm”:  a concussion, high intracranial pressure and a blood clot.” Said another way, “it’s complicated”, a term that I have become all too familiar with. I was hospitalized in April 2016 to address the blot clot and pain management. I did not attend school from April – June, missing out on my last year of elementary school and all the fun activities that went along with it.  During this time, I remained in significant pain. In addition, I lost my balance forcing me to walk with a cane, spent many hours enduring tests and sitting in doctor offices, attended physical therapy several times a week, participated in alternative treatment options, was tutored to get caught up on missed academics and somehow managed to get through each day, using the mailbox of cards and acts of kindness from friends and strangers as my beacon of hope. Not to mention, I did try to enjoy a daily dose of the Ellen DeGeneres show, along with my sisters, to make me laugh. It usually worked.  “Hope” was, and is, a word we use daily. I received fantastic news at the end of August 2016 when the blood clot had dissipated, my balance returned and I was able to return to school as a proud middle-schooler in September 2016.

Although the blood clot cleared, there are lingering medical issues that remain, with the most prevalent long-term side effect of a constant headache and chronic fatigue resulting from high intracranial hypertension and post concussive syndrome. Neither can be seen to the eye, but are part of the hidden illness that have never gone away.

After meeting with many doctors at The Floating Hospital for Children at Tufts Medical Center and The Brain Injury Center at Boston Children’s Hospital, I was encouraged to get involved with something that would help replace what I have lost in terms of my participation in activities I once loved, e.g. contact sports and related activities, and to help with the associated psychological impact. After one of my many physicians had learned of my 2016 philanthropy efforts of donating my birthday money in the form of gift cards to the Hematology Clinic at Tufts, I was encouraged to move forward with the Mighty Meredith Project. Therefore, after months of discussing the purpose and potential charitable offerings, together with my parents, we decided on the following mission for the Mighty Meredith Project:

• Bring education and awareness to having a Traumatic Brain Injury as an adolescent, with specific attention on their hidden impact – both physical and psychological.

• An avenue to give back to the medical community involved in my care, both past and present and support TBI research.

• Promote kindness, especially to those who may have a “hidden injury or illness.”

Presently, my recovery is slow and sometimes stymied by complications from the TBI. While I am able to attend school and participate in activities such as Student Council and re-defining my new “normal” through the world of dance, philanthropy and the advent of the Mighty Meredith Project; some things will always remain off limits and my life has been forever altered with one hit of the head.   The hope for the Mighty Meredith Project is to bring a bit of hope, joy and education to as many people as we can and to let traumatic brain injury suffers there is a network of us willing to help at any time.

Interview with Mighty Meredith

If there’s one thing you’d want everyone with TBI to know, what would it be?

You’re not alone.

You had to adjust to a “new normal.” What are some of the adjustments you have had to make?

I used to play lots of sports but I can no longer play any sports for the rest of my life. I can’t ski, I can’t sled. I can only dance. And that was a big one because I used to play soccer, basketball, lacrosse, everything. And now it’s just dance.

Concussions are an “Invisible injury.” Was that one of the most difficult things about it? 

Yeah. It was one of the most difficult things because I would go to school and do my homework but people only saw me at school, they didn’t see me go home, go to bed, cry because of the pain. I would go to school and seem fine. Also, living with a headache constantly was hard. People would usually think, ‘a concussion! Big whoop.’ Not really- it is a lot more than that. I have lost a couple friends from this, because they thought I was lying or exaggerating for attention.

What was most important to you when you started the Mighty Meredith project?

I love being kind. I love seeing people smile when I do something nice for them. That was a big part of it. Another part of it was raising awareness for traumatic brain injuries.

What is your main goal with the Mighty Meredith Project?

I think I want everyone to understand what it is like. I don’t want them to have to go through it but I want everyone to understand what it is like to live with a hidden illness. I want everyone to be kind to one another because you never know what is going on behind the scenes.

Are there any short-term goals for Mighty Meredith project? What do you have planned this summer?

We did a bake sale last year. We are doing another one this year. What I, personally, really want to do… when I was sick… I would watch Ellen every day, and I have always wanted to be on the Ellen Show.

How does it feel, knowing that you are other people’s strength as Mighty Meredith?

It is nerve wracking, but it is also feels really good. When I was sick, I didn’t really have anyone I could look up to who’d been through this.  I was just kinda figuring it out by myself. If I did have someone, I think it would be a lot easier. Now that people can see me and see that they are not alone and that they have someone that knows what they are going through. It’s good.

Was there one specific talk that made you step back and realize, whoa this is something?

I have done a couple. Some with local Daisy-Brownie troops, one with the student council at the high school. But there was one, at a local gym in town, after the fundraiser was over, I stood up and spoke and everyone started to cry. And I realized then, that this is big and this is what I want to do. It’s cool.

What was it like to meet Chris Nowinski and the CLF staff?

I have wanted to meet Chris Nowinski ever since I heard about the CLF and what he was doing to help others with TBI’s and raising awareness of concussions. I thought our scheduled meeting would just be involving Chris, my mother and I. I then turned the corner and it was like I was a celebrity walking the red carpet. The entire staff of the CLF was right in front of me. My heart was pounding with joy and my mouth hurt from smiling so much. The fact that the entire team took time out of their busy day to meet with me made me feel overwhelmed with love. That was the best day ever! Thank you to all the CLF staff for meeting with me, and to Chris for making me, a girl who once struggled with finding her new normal, feel like I was a part of something big.

Posted: May 11, 2018

“You are what you’ve overcome,” reads the military dog tag that hangs from my neck. Today and every day, it is a symbolic and physical reminder of how far I’ve come in the three years since choosing to apply to Dartmouth College instead of West Point.

With one concussion under my belt from my final high school baseball days, I walked onto the Dartmouth varsity soccer team as a goalie. Two weeks into practice, I was knocked on the temple by a stray shot I didn’t see coming. Exactly one year later, I took a ball to the nose during a scrimmage. All three times, I felt fine – just “shook it off” and continued with practice. It wasn’t until the following morning that tremendous pressure would fill my head, signaling something was wrong.

As athletes, we are conditioned to think we are invincible. We have to perform at 110% every time we hit the field, and are pushed back into playing before injuries (to the brain or otherwise) are fully healed. I fell victim to that competitive nature, returning to play when I was “good enough,” not good. There was no doctor mandating I stop contact sports. I was the only person who knew how my head was doing, and was the only person who could decide my future.

I started to feel more insecure than ever. I was going through the motions, listening to the same prognosis from doctor after doctor, and sitting on the sideline every day at practice. I was unhappy and unfulfilled, but unable to admit it to myself. I thought being an athlete was everything. As a ballerina, soccer, and baseball player from the age of four, “athlete” was the only identity I’d ever stuck with. But after nine months of school, waking up every day feeling the same – or worse – than the day before, I started to come to grips with the decision I knew I had to make.

Little did I know that trading my cleats in for character shoes in the spring of my sophomore year would finally bring me home. Theater was the last activity to be cut from my schedule when I committed to college soccer, but the first one I returned to after quitting. I took my first college theater class that spring, and fell so in love with it that I found myself interning this past fall at Northern Stage, a regional theater in Vermont run by one of Dartmouth’s professors, Carol Dunne. It was during this internship that I learned about marketing, development, and education in the theater sphere, and got my first professional acting contract. Dunne pushed me to pursue writing in my free time, knowing that I was still struggling with Post-Concussion Syndrome (PCS). Though I truly couldn’t think of anything scarier, I agreed to dive into a one woman show on my own experience with head trauma… “my diary – staged,” as the play begins.

For over a year, by that point, I had practiced shutting the bad out, afraid that sinking into the negatives of PCS would make my recovery even longer. Writing this play, ironically titled “It’s Fine, I’m Fine,” became a way for me to finally put into words everything I couldn’t before.

But it’s not just a play about a headache.

“It’s Fine, I’m Fine” is about the invisible. Anyone who has dealt with TBI and PCS knows that our symptoms aren’t our only trouble, and we certainly know that they’re never conveniently-timed. “It’s Fine, I’m Fine” is about transitions and self-discovery. About losing direction and letting go. About relationships and sexuality. About mental health and the therapist my parents don’t know exists. It’s an ode to the twists, turns, and deep dives in adolescence that we mask with “I’m fine.”

Maman’s Cooking

When Maman – that’s French for Mom – cooks,

you best stay out her way.

By the time I wake on Saturday mornings,

the smells slipping through the

space under the door

are a delightfully confusing mix of

roasting garlic and

Vermont maple syrup.

She’s up at the crack of 9am to begin that evening’s meal

just as dad finishes breakfast.

By the time I reveal myself,

she is two countertops-deep in

the dish of the day.

Clanging pots and pans,

she doesn’t care –

if she’s up,

so, too,

should the world

be.

From the sunporch

comes the banging of drums and African dialects.

Music from

Senegal,

Ghana,

la Cote D’Ivoire –

in this, Maman does not discriminate.

And so we have Saturday morning:

sound waves and scents

wafting and weaving

together in

sweetly-savored harmony.

But now

when memories like these pull me back home,

I can do nothing but sit and stare –

knowing that full meals of this

will end in misery.

Like dessert on a too-full stomach,

Maman’s cooking is too rich,

too heavy.

Bogging down my foggy mind.

No,

rabbit food will have to do.

Sometimes I fail, and I indulge.

Feeling, in those 20 minutes

before my new plateau derails,

that everything is back to normal.

And I am just home

on a Saturday morning…

 

My friends, my family, my community – they all know me as the confident, put-together girl who bounces from one extracurricular to the next with apparent ease. This show is my way of taking the mask off, even if just for an hour. This show is me admitting that sometimes I’m scared out of my mind, that sometimes I’m weak, that sometimes I cancel plans to go home and cry on my dorm room floor. The state of my head is my first thought in the morning, and most often the determinant of my bed time. I feel trapped by the things I have to do, or the food I have to eat, or the events I have to miss just to keep the muscle tension from getting worse than it is to start. In the show, I reference the exact number of days I’ve been dealing with the symptoms of my third concussion. When I was writing, that number was in the 300s. A week ago, that number doubled.

But I am a happier person than I was at 300, and miles above where I was at 0. I found my way back to theater, and know wholeheartedly that it is what I want to pursue for the rest of my life. There is no better feeling than telling stories night after night that matter, that change lives. If my show makes just one more person think twice before making assumptions, I’ll be happy. I know this is what I am called to do – finding the silver linings, inspiring compassion, and making the invisible visible.

Posted: February 14, 2018 

I got my first concussion when I was ten years old, but the concussion that scared me the most was my fifth concussion when I was in eighth grade. I remember sitting in school the day before, writing an essay on John Brown and Harper’s Ferry, and the next thing I remember is sitting against a brick wall in the gym the next day. My teammates had to tell me what happened. It was December, so we were practicing indoors, and I was going in for a tackle but I got tripped up with another girl and fell and hit my head against the wall. I was knocked unconscious and hit my head again on the floor. I was only out briefly, but when I came to I was crying. I was hallucinating mice and started vomiting uncontrollably. I went to the doctor two days later. He said I probably had a small brain bleed, and that I definitely had a concussion. I missed three months of school. I could never have imagined how much a concussion could impact my daily life and how long the symptoms would plague me.

I spent all my time at home laying in a dark room during my recovery. At school, I spent most of my time in the nurse’s office sipping ginger ale and eating saltines. I couldn’t think. Math that used to be easy for me became impossible. I couldn’t exercise at all for eight months. When I was finally able to get my heart rate up again, I would go blind in my left eye. Ten months after my fifth concussion, I lied to my doctor and went back to soccer.

My sophomore year of high school I was playing for the varsity team. I played through concussion after concussion, but my tenth concussion cost me my soccer career. I’d gotten a concussion in practice the day before, but I was able to hide it. The next day, I was body checked from the back. I never saw it coming. My head was flung forward and I hit the ground: hard. I couldn’t see anything. That didn’t stop me from playing, though. Later in that game I was going for a loose ball in the box and went to volley it but instead kicked the goalie in the head because of how bad my vision was. I never reported my injury and continued to play. Finally, after ignoring my concussion symptoms during the winter and part of my spring season, I went to the doctor because my head hurt so badly. I had an abnormal neurological exam and the doctor ordered an MRI. The scan showed some scarring. I was told I would never play soccer, or any contact sport, again.

 

Unfortunately, my concussion history doesn’t end there. I went to overnight camp that summer.  It was August 2015. During color war at camp I was playing an intense game of team handball. I don’t remember what happened, but I woke up on the ground. My friend was holding me on my side and yelling my name. I sat up and was so angry for no reason. I couldn’t organize my thoughts. My head was killing me and I was extremely nauseous. A few minutes later I started to vomit. I ignored these symptoms, played them off as dehydration, and I continued with my activities. A few days later I went home and went to the doctor. We decided that I should do half days of school, but when this was too much to handle we decided I should take the year off to focus on my health. Instead of preparing for junior year and the SAT, I was going to 10 doctor’s appointments a week. I was laying in a dark room in debilitating pain. I was depressed. I felt so alone and many of my friends could not understand why I stopped going to school. I ended up losing many friendships.

 

My symptoms are still very severe. I can’t focus on anything for more than a few minutes. My short-term memory is shot. I’ve become impulsive and sometimes say things without thinking through the consequences. I’ve had to leave class to vomit in school many times.  I always have a headache, and it spikes throughout the day. I get dizzy often, my balance isn’t good and I still go blind in my left eye when my heart rate goes up. I’m fatigued all the time, I have severe insomnia, and I also have tremors. I have anxiety and depression which at one point got so bad I wanted to kill myself. I got to a point where I’d take too many pain pills to see how far I could push it.

 

What gave me hope was being an assistant coach for my former club coach and his U-10 team. I helped them improve their soccer skills and got to know them as people. That was an extremely rewarding experience. I started to feel normal again. I had human contact. I was helping people. I found a sense of purpose that I had lost. I was able to pass along my knowledge of soccer and life to younger girls. I even recognized a concussion in one of the girls and I was in charge of explaining why she couldn’t go back into the game to her dad. I was also accepted at a new school and started back for my junior year September of 2016. Things were looking up, but I’ve had to accept that my life will never be the same.

 

 

Concussions changed the trajectory of my life, and for some time I let the concussions win by thinking I had lost my identity. I now realize that my concussions helped me figure out who I wanted to be in the future. Next year I will be a freshman at the University of Pittsburgh and will study neuroscience so I can go to medical school and hopefully one day specialize in pediatric TBI and concussions.

People ask me if I regret playing through my concussions. Depending on the day, you might get a different answer. Most days my answer is no. I realize that sounds strange given what I have and will deal with. But soccer was everything to me. I could not have lived with myself if I didn’t get everything out of soccer that I could. However, as more time passes, I’m starting to see that it wasn’t worth it. I’d never expect a teammate to play through a concussion, and I’d always let my coach know if I thought a teammate had one. I expect that from anyone. I encourage everyone who is reading this to speak up if you think you or someone you know has a concussion. And when you suspect you might have a concussion, always choose to come out of the game. I risked my life by staying in. I took unnecessary risks and there is much more to life than soccer. I encourage everyone to #TeamUpAgainstConcussions to prevent concussions from derailing more lives.