Posted: April 25, 2016 | Written winter of 2015-16 during Esther’s medical leave

I suffered my first serious concussion in eighth grade. I struggled with Post-Concussion Syndrome (PCS) for about two and a half years and then suffered another serious concussion right before my junior year of high school.

Before my concussion in eighth grade, I played soccer, hockey, and tennis, I was a dedicated student, and life was good. I experienced the concussion during a soccer game, and did not know enough to take myself out of the game despite dizziness, nausea, blurry vision, and confusion. It took me a long time to realize that this was serious. I had no idea that this seemingly harmless hit would turn my life upside down.

Initially, all I wanted to do was play soccer. I wanted to get back to my team and continue playing, but this concussion was something that I could not hide. For the rest of eighth grade, a little over a month, I don’t think I was able to sit through a full class. I spent so much time in the nurse’s office drinking ginger ale and eating saltines.

It was bizarre to be sitting in math class and have all of the numbers on the board blur and get a headache so intense I had to leave class. Normally, I would have been a step ahead, solving homework problems during the lesson. Usually, I would have been excited that we were watching a documentary in history class, but now I would grimace, knowing that after watching the screen for only minutes, I would have to leave the room with a splitting headache and a wave of nausea. Even at the lunch table, because of background noise, I couldn’t focus on the person talking. Usually the one to be cracking jokes, it often took me minutes to get a joke or catch up with conversation.

I just never stopped having symptoms and have been struggling with Post-Concussion Syndrome (PCS) ever since.

Almost a year after this concussion, it fully hit me that I could not play contact sports anymore. I was crushed. Sports were a huge piece of who I was. I defined myself as an athlete. Sports were a shared interest I had with family and friends, and my club soccer team was so special to me. I lost a group of girls that I loved and a coach to whom I looked up and who had been a mentor to me for several years. I had spent probably twenty-five hours a week playing sports. I didn’t even know what to do with myself anymore.

I remember texting with my soccer coach, finally telling him that I definitely could never play again. He said “we all become fans at some point. You just became one a little earlier.” This was so comforting to me. He made it seem so normal and natural, like one door closes and another opens. This conversation gave me closure with soccer and the ability to move on and tackle new things.

‘I’m an athlete, and I can’t play contact sports, and I can’t run. What do I do?’ I remember thinking. My doctor suggested a low impact, non-contact sport; golf fit the bill. I had taken one golf lesson in my life (and I was terrible), but many people in my family were passionate golfers so I decided to try, banking on hereditary natural talent. I remember my first golf lesson. I barely made solid contact with the ball during that hour. Being a beginner at a sport was something I had not experienced since I was four. I was so frustrated. But, it was golf or the chess club so I started working hard. I went to the driving range after school, embarrassing myself in front of everyone, but I went. I took lessons even though it frustrated me that I wasn’t great after just a few lessons. I got better and my competitive spirit was back. Now, I’m not giving hard hits and sliding in mud on the soccer field, but rather hacking my way out of sandpits in polos at the golf course. I can hit a 230-yard drive, though. A change in sport, but once an athlete, always an athlete.

I started writing for my school newspaper, which I would never have had time to do had I been putting so much time into sports. I was appointed as an editor. I became a member of my school’s Disciplinary Committee, and I decided to row crew. I totally reinvented myself.

One of my doctors at Boston Children’s Hospital called me in April of tenth grade, asking me if I would do a live NESN interview with him about concussions and Children’s Brain Injury Center. I immediately said yes, not expecting it to manifest in anything. I quickly realized that I could help and that there are a lot of people out there silently soldiering on with PCS who go under the radar for medical care, with friends and family, and at school. I wanted to reach them because I guessed that they had all felt the same losses, disappointment, fear, and isolation that I had.

I had noticed a lack of education about concussions and PCS since eighth grade and decided that I needed to help change that. I did the interview as well as a few other events with Children’s and grew passionate.

Everything seemed to have fallen into place. I had developed new passions including concussion advocacy, I was still a strong student, and I was dealing with my symptoms. I felt like the ‘comeback kid’ and it felt amazing.

I was poised for a perfect junior year. I was taking two Honors and two AP classes, I was involved in extracurriculars I cared about, and I was feeling better than I had felt since eighth grade. Then, two weeks before school, I fell down a flight of stairs and suffered another bad concussion.

This was absolutely devastating. I tried to return to school and continue on with everything but this time I simply couldn’t.

I ended up having to take a medical leave from the school I had attended since age four. It seemed like yet again, my whole world had crumbled. I couldn’t participate in my school extracurriculars and my symptoms were worse than ever. The task of reinventing myself again seemed impossible.

But, I had my concussion advocacy, and that is what I have dedicated my year to, via an internship with the Concussion Legacy Foundation and continued work with Boston Children’s Hospital.

I want my legacy to be in educating the public – especially teenagers — about concussions and their long-term effects. Every person who plays sports deserves to know the risks—I certainly didn’t. I had no idea when signing up for middle school sports that I would be signing up for three years of headaches and symptoms. There is such a lack of education, even amongst athletes, and this needs to change. Concussion is a pervasive injury and can affect so many aspects of your life.

There are also rule changes that need to be made. Sports need to be safer. Do five year olds need to be tackling? Do six year olds need to be heading or checking into the boards?

I also just want to reach other people with PCS. It is hard to struggle through on your own, never having anyone who truly understands. Knowing that you aren’t alone and that your litany of misunderstood symptoms are a result of your injury is comforting.

I want to reach schools. Many schools do not understand PCS or know how to help students suffering with these symptoms. Many schools attribute PCS symptoms to other diagnosis, which severely disadvantages students with PCS.

I want to dispel this notion that concussion is solely a temporary and non-serious injury because it is simply not factual. True, most people recover in two to four weeks from a concussion, but multiple concussions take a toll. The reason that my eighth grade concussion was so bad was because I had probably suffered several minor concussions that I never took seriously and played through. This is so dangerous. There needs to be a cultural shift in order to change concussion reporting.

I get it, as an athlete you are supposed to be tough. You’re supposed to take hits and be fine. It’s different with head injuries. Playing with a sprain and potentially spraining again is nothing compared to potentially giving up your passions and totally changing your identity. It’s not worth it.

It takes a team to make a change like this. The coaches and players must all understand the severity of concussion and look out for each other. As a teammate, you have your quarterback’s back during the game, protecting him so he can make a play. You also have to have his back when he takes a hit and struggles to get up. Don’t put him back on his feet and give him a slap on the back. You have to say something and get him out of the game. That’s loyalty; putting him in imminent danger is not.

Though taking a medical leave was not ideal and this injury has totally changed my life and mostly not for the better, it’s made me stronger and I’ve realized that I have a cause that I care about more than anything else. I’m all in with concussions. I’ve found a passion and it might be a tad out of the ordinary. I’ve been through a lot and I don’t want other kids to go through what I’ve gone through. This is becoming an epidemic and we need to reverse the terrible effects.

At this point, as a teenager without medical credentials, I can’t cure concussions. So I’m going to do what I can do. I can share my story and my experiences.

I feel like I have an insight that only someone in the throes of PCS has and I want to use that. I want to be a cautionary tale of what happens when you don’t take minor hits seriously, but also as an inspiring story of getting back on your own two feet and getting back in the game even if it’s a new game. I hope that my story is one that other kids suffering with PCS can connect with, and I hope that I can reach schools and sports leagues. I’m all in.

Posted: March 21, 2017

What have I learned and gained from my experience with Post-Concussion Syndrome (PCS)?

Resilience- nobody is better at getting back in the saddle, no matter how many times they are knocked off.

This is a life lesson. You will have perseverance and resilience like nobody else.

Rallying- we may not be able to sustain pushing through pain for long durations, but we can pull everything together for something big.

Another important tool for the rest of your life. I may have had to take the year off from school but I pulled a 2270 on the SAT when, according to my mom, I walked into the test center swaying and weaving side to side, heavily concussed.

Empathy/not judging- people who have had PCS have an insight into silent suffering and having the exterior and the interior not match up. They may all look fine and happy on the outside whilst struggling with headaches and other symptoms.

As cheesy as it sounds, I feel like I don’t judge people anymore because I have learned that you never know what someone is going through and what burden they are carrying in silence.

Coping- we’ve all been through a lot, and we keep going. I think we’ve all found coping mechanisms to get through losses and pain.

My best coping mechanism is humor. I find solace in joking about my situation. I recently fell asleep on a rug at a friend’s house in front of all of my friends because I hadn’t had my nap and I had a bad headache. This story could highlight my impairments and sad current situation, but I would rather laugh at the fact that I woke up to my friends trying to find out where I was. I could give a list of rough things that have happened to me, but I would rather be laughing. This coping mechanism is also a flaw of mine. I like to make jokes about what has happened to me and I thus sometimes don’t allow myself to fully come to terms with how much it’s affected me. I don’t like crying, but I think I’ve found a balance. Every once in a while I’ll cry to my mom or my best friend, but the rest of the time, I keep my spirits up with jokes.

Realizing who is a true friend and who isn’t- some people care a lot about you and want to help. Others don’t really care or take time to acknowledge what PCS has done to our lives. You learn who will stand by you.

I realized in high school what I think everyone finds out at some point: that you’re lucky if you have one or two really true friends. Though one person who I would have considered a true friend has let me down immensely through this process, I’ve emerged with a best friend with whom I can talk, and for that I am so grateful. I still hang out with my other friends, but I’ve come to terms with the fact that most of them won’t be there for me even if I am for them.

Not taking things for granted.

I have definitely learned that life can change in an instant. With that knowledge, I try to live in the moment and seize opportunities that are offered.

Posted: August 27, 2018

Esther Lovett is a Post-Concussion Syndrome (PCS) survivor, dedicated concussion advocate and beloved CLF blogger. Esther stopped by the CLF offices in Boston before leaving for her freshman year of college to share some tips and wisdom about going back to school with PCS symptoms. 

How are your PCS Symptoms these days?
I’ve been getting better over time, it’s been over 5 years that I’ve had PCS throughout a few different concussions. I’ve been seeing Dr. Cantu for a long time and doing different treatments that have helped, and then I think a big piece of it is just learning to manage symptoms and just figuring out how to go day to day still having symptoms and just staying optimistic about different treatments. I just keep getting better and better.

Tell us about your Headstrong Concussion project.
I started working on Headstrong last summer and the website officially came out in February. I’ve been involved with CLF for a long time and I still am, I sort of consider Headstrong my side hustle to CLF. But I just really wanted a place to connect with other kids and create a resource for them where they were getting real information about PCS, especially where they could follow along with my story because I felt it was helpful to me to hear other people’s stories and hear how they dealt with post-concussion syndrome. That helped me make choices during my recovery and just feel a sense of community and that there’s other people who are going through this as well and you’re not struggling alone. So more to create a community and to keep kids optimistic that you’re going to keep getting better and that there are lots of things to do and a lot of people that are going through this with you.

What are you looking forward to about going to college?
I am looking forward to heading off to college this week to Georgetown. I’m just excited to meet new people and figure out what I want to study.

Any back-to-school advice for people with PCS concerns?
I think it’s definitely important to talk to your doctor if you need any accommodations for school. Also just figuring out, whether it be neuro-psych testing or more just through your own experience, where you feel that you need more help and then either reaching out to find resources or yourself finding new ways to study. That really helps just to frame it in a new way. There’s a lot of resources at whatever school you’re at whether you’re in college or high school. Reach out and get a hold of those resources and make sure that you’re not struggling alone. Definitely be a self advocate and figure out what works for you. It may take a little longer to study, it can be frustrating at times, I know. But you’re going to find a way to do it for sure, and then you’re going to get better.

Any tips for managing PCS during the school year?
Through CLF and through my website Headstrong, I still talk to a lot of kids who are going through PCS as well and I think it’s really helpful to create a sense of community and connect with other kids who are going through something similar. Some tips I have for school – definitely utilize naps, naps are so underrated and can help give you a little boost after school before doing homework. Also, if you have struggles with your memory like I did, start studying early for tests and try using different mnemonic devices to help you remember. That’s been super helpful for me.

Posted: August 1, 2017

Disclaimer: I am not a medical professional. The advice that I’m giving is based on my personal experience and treatments that have worked for me. Please consult with your doctor before beginning any of the treatments.

Thank you to everyone who submitted questions on Post-Concussion Syndrome (PCS) for this #AskEsther mailbag! If you need a reminder of who I am, you’ll find that here. I hope to have more content soon, so if you have questions on PCS for a teenager who has been through it, don’t stop sending them to [email protected]. Now… on to the mailbag!

From Jenn

Hi Esther — my 13 yr old daughter had a severe concussion during a soccer game over 2 years ago. She has since struggled with migraines, neck pain, her grades have suffered, and she has not been the same socially. She went through extensive physical therapy for about a year following the concussion to help her back and neck. Is there anything we can do to help her with these other things that might be associated with her concussion?

Thanks for your help!

Jenn,

I’m so sorry to hear about your daughter, and I can relate to what she’s going through. Physical therapy significantly helped me with my symptoms. The aspect of PT that was most helpful for me was vestibular therapy, which not all PT includes. Vestibular therapy can help with neck pain and headaches. In addition, my physical therapist gave me exercises for my eyes; I had a severe convergence insufficiency, which meant that I was seeing double much too far away which made reading and schoolwork difficult. I had no idea that I had this convergence issue so I’d suggest asking about it even if your daughter doesn’t have any eye symptoms. Improving this helped my headaches and made schoolwork easier.

I would also recommend Cognitive Behavioral Therapy (CBT), which is basically memory and executive functioning retraining; doing CBT made me feel confident about going back to school after concussions, and I really credit it with my success in school. Finding a CBT specialist may not be easy: make sure that he or she combines memory retraining with helpful daily skills.

In terms of school and grades, help your daughter find good advocates at school (a school nurse, teacher, adviser) since she may need accommodations such as extra time or reduced coursework. Her school may ask for neuropsychological testing in order to grant accommodations.

Other treatments that I tried were acupuncture, chiropractic therapy, massage, and migraine medications; I would suggest talking with your doctor about any of those. The Concussion Legacy Foundation has some great content on PCS treatments here.

As I understand it, and I’m not a doctor, headaches with PCS can be migrainous, and they can also be tension headaches as a result of having to try harder to stay focused.  Ask your daughter’s doctor to help her distinguish which she might be having.

You also mentioned that your daughter has not been the same socially. I have found the social piece one of the hardest things during my concussion journey. I think it is extremely important to stay social, but oftentimes social engagements seem like a burden. I’m in high school, and I’ve found that I just can’t go to parties because of the noise, stimulation, and lights, but I’ve found alternative ways to still see friends. I’d recommend finding quiet restaurants to go to dinner with friends or having friends over to watch a movie rather than going to the cinema, which can be a lot of stimulation. And please tell her not to be afraid to tell her friends why she can’t participate in certain things. I have found that while some friends cannot understand or even remotely empathize with invisible symptoms, good friends are more than happy to accommodate you.

Hope this helps, and I wish all the best to you and your daughter!
Esther

From Jennifer

In September, it will be two years since I was run over by my horse. I don’t remember any of it, and I was in the hospital for 3 days and 2 nights, I didn’t break anything, it was for the concussion, and I couldn’t remember what someone said to me the moment before for about 20 hours afterwards apparently. It was a rough go for several months afterwards, I’m doing much better now, however I still get light headed every time my head bends down low, will this go away at some point or can I expect to deal with that indefinitely?

Jennifer,

I’m glad that you are feeling better now, but that sounds like such an awful experience! The lightheadedness is hard—I’ve experienced it as well. One thing that may help is vestibular therapy, which helps dizziness, lightheadedness, and balance.  You might also ask a trained physical therapist or specialized eye doctor to check you for any vision problems, such as convergence insufficiency. These therapies helped to decrease my dizziness and lightheadedness.

Generally, when you’ve suffered with symptoms for a while you can think that this will be a problem forever, but I urge you to be hopeful since you certainly have been recovering since this injury!

All the best,
Esther

From Marrianne

Hi Esther, 

I’ve never had a concussion before until I had a really bad fall on May 10th, 2017.  It was more like a “flying face plant” to the floor, rushing through the airport full speed, and tripped over a table and went flying and landed on my face/head. Paramedics checked me out, but I didn’t want to go right to the hospital because I hadn’t seen my son in 2 years. However, the next morning the pain was twice as bad all over, & in my head and my right eye was swollen shut. My husband took me to the ER and they did a CT scan, lots of x-rays, etc. I was bruised from head to toe, but only broken nose and lots of swelling above my right eye. Really big bump on the forehead above right eye. I’ve also had my eyes checked w/ an ophthalmologist because my right eye vision is just a little off, not terribly blurry, but a little around the periphery. He didn’t find anything wrong, and said something like if there’s swelling inside pressing on my optic nerve there’s nothing he can do about that anyway. I’m hoping that the swelling will continue to go down and it will get better. I use ice packs on my head, warm wraps on my very painful neck, etc.

Previous to all this I had chronic migraines which doesn’t help matters, but my question is that as the weeks have gone on I was still having daily headaches and nausea every day which has been super bad some days. No actual vomiting, just nausea. I have read a lot since the accident about concussions and realize how important rest is, and I’ve tried in the last couple days to rest more (actually feel like I’ve done nothing, other than washing dishes and a little laundry; which is hard for me- I normally work from home, and do lots of computer work, I know the screen time has to be limited).  The last two days have been a little bit better, no nausea.

Would you still advise seeing a neurologist at this point or not?  I’m frustrated because I don’t know how much rest is rest. And I don’t know how long this is supposed to take to recover. 

If you can give any advice I will really appreciate it! 

Thank you!

Marrianne,

I’m so sorry to hear that you experienced this! I would definitely suggest seeing a neurologist since you are still experiencing symptoms.

As for rest, this was a hard thing for me to gage as well; if you are used doing a lot and always being busy it can be very hard to take time off, but it’s very important to do so, especially if you have felt better the last two days whilst resting—seems like your brain needs this. I think taking frequent breaks from tasks and especially from screen time can be very helpful. I would also recommend a yellow filter for your screen when you have to use a screen (you can use a clear plastic folder from Staples). Anything you can do to reduce stimulation to light, noise, elevated heart rate, and cognitive work would help now in my experience. Wear sunglasses when outside, when indoors face away from sunlit windows, try to avoid stimulating environments (sometimes a mall or loud restaurant can feel very overwhelming).

Some people with Post-Concussion Syndrome experience migraine-like headaches, so your history of migraines confuses things, and your vision issue may be contributing.  A good neurologist may be helpful.

Posted: February 7, 2017

I wake up most days with a headache. Sometimes a cup of tea does it, but other times I need two Motrin and twenty minutes more sleep.  Sometimes I need two hours and miss classes. At school, I put a strong face on. I smile, I engage in class, I work hard, and I get good grades. However, sitting in class I often find the board blurring in front of me and I have to work so hard to keep all of the writing as just one of itself. The teacher’s voice often goes in and out as I struggle to focus with a splitting headache.

During free periods, I spend all of my time doing homework because it just takes me longer to do everything.  I have to carefully plan how I study. Prior to the injury, I had an excellent memory which was advantageous for school. After, I struggled with my memory and other symptoms. I could no longer just quickly review work the night before, so I began to have to plan more before any assessment, carefully making study guides, and using mnemonic devices to master vocabulary. I could no longer sit for four hours straight and complete all of my assignments. I had to set a timer for thirty minutes, get up, stretch, do some jumping jacks, drink water, and then return back to work. I still quickly understand material, and my performance and output are as strong as they were pre-concussion – I just have to work differently. Initially it was frustrating to have to drastically alter the way that I studied, but I have made it work.

I had to totally change the way that I exercise as well.  Rather than playing team sports, running, and doing workouts specific to my sports, I found myself having to work out just to work out.  No longer able to run, I had to switch to Pilates, yoga, and light weights, always careful not to hurt my neck or back more.

It is hard to have to change so many routine things that you never imagined would have to change. Once a stress reliever and something I enjoyed, running even for just a few minutes leaves me extremely dizzy and nauseated with a blood-pounding headache.

When I’ve thrown up at school because of a headache, I had to just continue my day because I hate complaining and I didn’t want to miss school.

With a bad headache I often become very sensitive to smell. I feel bad when I turn down a meal that is usually one of my favorites and have to go to a dark room instead of eating with my family.

I sometimes get really irritable. I was a very calm and ‘go with the flow’ person, and now, sometimes the littlest things just really annoy me.

My confidence has taken a toll. When you no longer feel like yourself and struggle to remember things, you don’t feel very confident about schoolwork. I was always a strong student and now I tentatively submit my answers to online quizzes. Though I still receive good grades, they come with more work and stress.

I used to have 20/10 vision in both eyes and my eye doctor told me that I should be an aviator with such crisp vision. Now, I squint to read and my vision blurs or doubles – I don’t think I’ll be piloting any time soon.

I used to put my hair in a ponytail almost every day. Now, ponytails worsen my headache so even when working out, I have to leave my hair down or in a braid.

I sometimes wear sunglasses inside my house while doing work since sunlight and glare make me headachy. I wear sunglasses almost all of the time when I’m outside.

I randomly lose my balance and get dizzy. I guess I’m glad that I can make people laugh as I topple over or near-miss a wall, but it is disconcerting to walk around when everything is blurry or have a conversation when the person is blurry and double.

I always considered myself a quick wit, and now I laugh with a considerable delay or think of a great addition to a conversation that happened five minutes ago.

All of these things show how pervasive Post-Concussion Syndrome (PCS) is. It’s not just your sport or just your academics. It’s your whole life and each little loss and change adds up.