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.