Warning: This story contains mention of suicide and may be triggering to some readers. 

Posted: May 24, 2021

Lost Inside Myself

My current symptoms are a result of not just one concussion, but a cluster of three head hits sustained over a three-day period. These most recent concussions occurred in early September 2018 – the first when I was hit in the back of my head with a car door. A day later I had gotten water in my eye in the shower and whipped my head back. Then later that night I ran into a metal bedpost in our bedroom. Clearly, I’m a walking disaster so there is no telling which hit specifically caused the concussion(s).

My first diagnosed concussion happened in 2016 after a volleyball accident at work when I was an athletic trainer. After that diagnosis, I slowly returned to normal activities as my symptoms subsided. I attempted to manage this last cluster of concussions the same way. I continued to have vision and noise sensitivity issues but assumed they would improve with time if I was careful. By November 2018, I was still struggling with daily living, so I went to see my primary care physician. She diagnosed me with Post-Concussion Syndrome (PCS) and referred me to their concussion management team. I received therapy for visual processing issues, vertigo, headaches, anxiety, depression, and post-traumatic stress disorder (PTSD).

My vision issues, vertigo, and headaches were incredibly intense and forced me to isolate in our home for multiple months. My husband and I sat in almost complete darkness and silence, with only side lamps for light and speaking in hushed tones. Unable to watch television, I sat alone in the dark for most of this time, only listening to podcasts and reruns of shows I’d seen enough times to replay the images in my head.
I couldn’t tolerate any part of the outside world for a very long time. I went six months without going to the grocery store. When I was forced to go out, I looked like Carmen Sandiego with a wide-brimmed hat, sunglasses, and earplugs or noise-canceling headphones. I looked like I didn’t belong. I felt like I didn’t belong. When I stepped outside of the house, my skin crawled from sensory overload.

I looked like I didn’t belong. I felt like I didn’t belong. When I stepped outside of the house, my skin crawled from sensory overload.

As time dragged on, my physical symptoms slowly improved. I was able to manage my mental health well in the beginning with the help of my neuropsychologist and counselor. I felt like I had a good-sized toolbox of resources to manage my anxiety and depression, which I had experienced and taken medication for when I was a teenager. I soon realized that the changes that were occurring in my brain were unlike anything I had experienced before and they were going to turn my life and sense of self upside down.

To me, it wasn’t a rollercoaster of highs and lows, or two steps forward one step back, until after I hit the one-year mark. Up until that point if I wasn’t battling one symptom, I was battling another, and the causes seemed unpredictable. My vision and headaches finally started to improve around February and March of 2019 after stabilizing on all the medications. As those physical symptoms got better, my mental health took a drastic turn for the worst. The mental health challenges I endured over the next few months were excruciating and the physical symptoms I still paled in comparison to the soul-torturing nightmare that was going on inside of my head.

I felt lost inside myself – like someone I didn’t know was behind the wheel. She was a person who did not feel at home in my life, who did not feel like she connected to and loved the people whom I loved, who was easily triggered, and who felt impulsive and dangerous. It felt as though she was going to hijack my life and burn everything I loved and worked so hard for to the ground. For a few weeks I talked to my therapist and neuropsychologist about whether I could be dealing with something in addition to anxiety, depression, and PTSD. I was concerned I was manic depressive or developing a personality disorder.

After my breakdown in the summer of 2017, nine months after my volleyball concussion, I stopped drinking alcohol and drastically limited my caffeine intake. Had I not quit those things that could eventually develop into an addiction or that I could self-medicate with, I think my story could have ended very differently.

I also struggle with perfectionism, so the confusion around what I was experiencing was especially brutal. I was a people-pleasing perfectionist who tried to always think of others, do nice things, be a good person, and analyze my words and actions for how they might affect others. It ate me alive to feel like I was someone who represents all the worst things I ever feared I could be. My anxiety was in overdrive and my depression about the horrible human being I was becoming was causing me to completely withdraw from every relationship in my life. I was dissociating and self-isolating in order to protect myself and the people that I loved. I believed I had to turn off my heart and my spirit to keep them from infecting this beautiful, tender, vulnerable, precious life of mine.

My anxiety was in overdrive and my depression about the horrible human being I was becoming was causing me to completely withdraw from every relationship in my life.

One day, I hit a breaking point. I had gone to an appointment with my primary care physician and I lied to her about how I was doing mentally. I had suicidal thoughts a few times in the weeks before the appointment and was starting to feel like the people in my life would be better off without me. I shared none of that information with her. I drove to work after my appointment and broke down sobbing in my car in the parking lot. I called my husband and told him I no longer trusted myself to keep myself alive any longer. It was a giant red flag to know I was dangerously close to the point of no return, yet I still felt like withholding information from my physician. I needed a safety net because I wasn’t able to keep myself afloat anymore. Despite wanting to be off medication so my husband and I could start a family, I made the difficult decision to go back on medications. That day in the car, I realized I needed to stay alive before thinking about the future.

I met with my neuropsychologist the next day and she said I had a survivor’s instinct. That was something I didn’t expect – wasn’t I thinking about suicide? She explained how even at what felt like rock bottom, there was a part of me, the fighter in me, that understood how withholding information from a medical professional was deceptive. The fighter in me overrode whatever else I was feeling. We also talked about whether I thought I needed to go inpatient for suicide watch. It was scary to have to self-assess your ability to keep yourself alive. Until now, I don’t think I really appreciated the amount of integrity and grit it takes to evaluate your own mental stability and know you are the only person who knows if you are being truthful. I decided that I did feel “stable,” for lack of a better word, enough to start meds and not go into inpatient care. I bumped up my therapy to twice a week and was barely making it from day to day. I was practicing mindfulness like it was my religion to keep me afloat until the meds kicked in. I was in a kind of vast and unending darkness that I feared would swallow me whole. But I began to see a light in the corner. I had to keep it in my vision for fear that if I blinked it would go out, like a candle in the wind. Each day, the light grew slightly bigger, stronger, and warmer. I was starting to find some space and some room to breathe.

I was in a kind of vast and unending darkness that I feared would swallow me whole. But I began to see a light in the corner.

As the meds kicked in and the depression slowly started to lift, I was now regularly filled with grief. I cried. A lot. I was so overcome with grief for the life and future I felt like I had lost. My heart was filled with such brokenness, this is not how it was meant to be. I slowly realized that this grief was my heart unfreezing and although I was still very disconnected from the people and the things in my life that I loved, my heart missed them. That was important. That was a cause for hope.

Finding My Way Home

By the end of April 2019 and after two months of medication, I decided to transition back to work full-time as a P.E. and Health teacher. I was constantly exhausted, falling asleep by 6:30 p.m. and sleeping 11-12 hours on workdays. At this time I had also finally conquered the feat of everyday necessities like going to the grocery store. I could slowly start to do small things to lift my spirits like going for a walk or seeing family, but I could only do it on days I didn’t work.  I felt like I was running my life on a cost-benefit Excel sheet. Before doing any activity or leaving the house, I’d have to ask myself “what is this going to cost me?” and “what am I going to gain?” Life was not enjoyable, but I wasn’t constantly suffering anymore.

During the summer I got to really work on self-care. I walked on the greenbelt, swam in the pool 4-5 days a week, and spent time journaling. I was also able to focus on my relationships by taking love from just a feeling and making it into an action. I had come to realize I wasn’t feeling the same emotions I used to feel when I thought of someone or was with someone I cared about. I needed to work on flexing my love muscle and I diligently tried to cultivate this feeling in myself for the people in my life. This helped for a while but slowly morphed into me analyzing encounters I was having with those close to me. I started to question my decisions and picked apart my interactions with others. My dissociation only compounded as I continued to assess the damage PCS took on my life. Getting out of my head was so important and through mindfulness, I slowly got there. It took a ton of work. It still takes a ton of work. But each day, week, and month, the work slowly gets easier.

My PCS eventually crossed from the months and into the years category. The idea of having PCS for years seemed unbearable and I really started to wrestle with how long I thought I could go through life like this. Could I care for others or children? Did I think I could be a worthy wife for my partner? Was it fair to my husband to ask him to stay married to me if I am like this forever? I tried to spend some time, but not too much time, mulling over these questions and their possible answers. A wise friend of mine named Ellen, who also had PCS (if you don’t already have a friend who has it, go find one) once said, “Sometimes it’s hard to know if there is an answer. You can drive yourself crazy looking for answers. Eventually, you just have to be OK with not having answers to some of your questions.” She could not have been more right. The conversations I had with her and another friend, Tessie, who serendipitously also had PCS at the same time as me, changed my perspective and my life. I don’t think I would be here today if it wasn’t for them. Find a PCS partner in crime, it will be one of the most important things you do on your journey.

Find a PCS partner in crime, it will be one of the most important things you do on your journey.

I had to come to terms with some hard truths and the quicker I did that, the quicker my heart softened, and I started to see a road home – a road back to myself. Unfortunately, or fortunately, depending on how you look at it, that road started with trust. Trust is about the hardest thing to lean into when you have PCS. For me, I didn’t feel I could trust anyone, and I didn’t feel like I or anyone could trust my brain. After suffering from PCS for so long, I felt my brain and body were always in danger. But I had to learn to trust. I had to trust that it would be OK. I had to trust this was happening for a reason. I slowly realized that home isn’t a place you find – it is a place you make. By making a home within myself, I created a place I’d always feel safe. I transitioned from feeling like a broken monster who could never belong anywhere to a healing person.

 

I have done immense amounts of work to help destigmatize mental health challenges at my job and in my community because I never want anyone else to feel as alienated as I did. I remember in the darkest hours of the darkest days believing there isn’t a place for people like me in this world. I thought I’d never again fit in and never again be made whole. Every time I write or read these two sentences, a weight fills my heart and tears fill my eyes. I feel those words perfectly encapsulate my PCS experience. It makes me so grateful I made it out alive and it fills me with so much empathy for those that did not.

I work very hard to focus on being present and what is in front of me instead of what happened or what the future will look like. It took a lot of deconditioning and reconditioning for me to learn that self-care isn’t selfish – it’s self-preserving and self-sustaining. I need self-care to function to the best of my abilities with these new parameters in this time that I prefer to see as “the weirds” instead of my “new normal.” “The weirds” is a phrase I’ve adopted from my favorite podcast, Staying In with Emily & Kumail. They use it to describe the time of COVID, but I think it also eloquently describes PCS recovery. “The weirds” seemed more palatable than a “new normal” and a much better description as this experience is weird and nothing about it is normal!

In November 2019, at the end of a long break from work and a year after being diagnosed with PCS, I had two days where I was symptom-free enough to forget I had PCS. Feeling that well for just two days changed everything. It gave me hope and changed what I believed was possible for me. Then I returned to work and all my symptoms came back. It was the same routine and my mind and body just felt like they had had enough. My symptoms continued to increase over the winter. Having the stark contrast of feeling healed against a flood of symptoms upon returning to work really proved how significantly and negatively my job was impacting my recovery. If being symptom-free was possible even for moments in time, that needed to be the goal. I wanted quality of life. I was sick of surviving. I had been surviving for too long. I decided to leave my job.

 

A Place to Belong

In the most unfortunate of circumstances, God and Mother Earth brought the world to meet me where I was at. The cost the coronavirus took and continues to take on the world is astronomical. I see the hardship, sacrifice, anxiety, and turmoil not only on the news but in my own home. It feels unfair and selfish to revel in the peace I have found during this time. The world has come to a grinding halt. It is slower, quieter, and everything my brain yearns for my environment to be. I am outside for hours most days gardening, hiking, walking, or riding my bike around the neighborhood. I can do activities all day long with a small break or two, instead of only tolerating a few hours of activity. It is amazing what my brain could do when I am not with middle school students for 40 hours a week. My headaches are almost gone and I am completely off of my nausea meds. Most importantly, I feel more and more like myself. My sense of humor and wit, my kindness in acts and words, my thoughtfulness in the way I deeply think about others and their situations, my compassion and empathy for people, and my personality are returning. I can look around and feel like this is my life, these are my people, I belong here.

 

It has been over five years since my very first diagnosed concussion and I have been experiencing symptoms off and on from multiple concussions ever since. I deserve better and so do the people I care about. Things are definitely improving, but there are still hard moments. I have started to taper off my antidepressants and that feels scary. I think I am ready but the little doubters in my head make me question if I can do it or if I’ll fall apart. But I’ve found things that help me focus on the positives and I am sticking to them. I am doing my best to give myself the grace I deserve and proud of what I survived. I am proud to have survived. I am so grateful for the people who kept showing up for me every day even when I couldn’t show up for them or myself. I say to myself, “How lucky am I that I get to fall in love with my life all over again?” I feel even luckier that through this journey I’ve also fallen even more in love with my husband. I feel so blessed for my life and the growth I’ve had- the closure and resolution I’ve found where there was brokenness, the relationships that grew boundaries and connections in ways I never thought possible, and the light that found its way to me through what felt like impenetrable darkness. For all PCS took away from me, I have gained so much through it all.

For all PCS took away from me, I have gained so much through it all.

I hope part of my reason for having PCS is helping you. You are not alone. You will make it out the other side. As much as I disdain the term, you will find your “new normal.” You will create a worthwhile place where you can feel at home in “the weirds,” in your “weirds.” It may take endless therapy sessions talking about how afraid you are that things won’t feel or be the same but you will slowly start to evolve. You will see a shift towards a wholehearted you. Self-compassion, boundaries, strength, intuition, giving grace and leaning into the unknown will slowly and surely start to come easier. And it’s in part because over time, you changed your mindset. You have to believe you can rediscover the good in you.

I’ll leave you with one last story, a Cherokee parable titled “A Tale of Two Wolves”:

An old Cherokee told his grandson,
“My son, there is a battle between two wolves inside us all.
One is Evil. It is anger, jealousy, greed, resentment, inferiority, lies and ego.
The other is Good. It is joy, peace, love, hope, humility, kindness, empathy and truth.”
The boy thought about it, and asked, “Grandfather, which wolf wins?”
The old man quietly replied,
“The one you feed.”

May feeding your “Good Wolf” get easier. May you find the presence necessary to experience the beauty that is around you. May your head be full of peace and your soul be full of hope. May you find companionship in your journey and grace in your heart. May you practice self-compassion and learn to love the parts you once believed to be unlovable. May you never ever feel alone.

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If you or someone you know is struggling with concussion or suspected CTE symptoms, reach out to us through the CLF HelpLine. We support patients and families by providing personalized help to those struggling with the outcomes of brain injury. Submit your request today and a dedicated member of the Concussion Legacy Foundation team will be happy to assist you.

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 emotional support, call the 988 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.

Posted: March 16, 2021 

Courtney Spitzer’s story

Gymnastics became increasingly more difficult on my body as I grew older. By my 20s, many skills felt different, including my Jaeger—a skill on the uneven bars in which a gymnast starts in a handstand, swings forward, releases the bar, flips, and catches it again. If she misses, it’s a 10-foot fall to her stomach. By my senior year of college, I repeatedly fell off the bar multiple times a day, whiplashing my neck with each impact.

By November 2017, I was not feeling right. I had sustained two fairly serious concussions the previous year, so I was familiar with the symptoms. This experience was similar, but I remembered no specific impact, and neither I, nor my doctor, attributed this to a brain injury. For the next five months, I was sent from one physician to another as my extreme fatigue, headache, and nausea persisted, interspersed with confusing symptoms like low blood pressure and GI issues. No one could pinpoint the problem, until one day, my doctor, fresh from new training on concussion treatment, walked me through a series of tests which I failed miserably. I was diagnosed with Post-Concussion Syndrome (PCS) and referred to vision and vestibular therapy. At this point, there were only two months left in the school year, and I had missed the entirety of my 20th, and final, year of gymnastics.

Because of the understanding and flexibility of my professors, I successfully graduated from Cornell University in May and moved back to San Diego, having improved significantly, but without fully completing my treatment. Two weeks later, I was rear-ended. I reverted to my disoriented, nauseous and emotionally volatile state. Worst of all, I felt like my personality was gone. After weeks of little progress but plenty of fear, a cancellation gave me an appointment at UCSD’s concussion clinic. In addition to vestibular and vision therapy, I began a regimented return to physical activity and slowly took-up running. My balance and normal vision returned; my nausea, fatigue, and headaches decreased; and I finally felt more like myself.

When I was given an opportunity to work under a researcher at Harvard Medical School a few months later, I moved to Boston. My proximity to medicine and history of concussions influenced my decision to pursue a medical degree, so I enrolled in night classes and began studying for the MCAT. This overexerted my brain, and my fatigue returned, my headaches increased, and I felt my functioning slipping. I was referred to the concussion clinic at BU, and again, started vestibular therapy, a regimented exercise routine, osteopathic manipulation to help with neck pain, and acupuncture to relieve sharp pains emanating into the base of my skull.

Since this final visit to BU in 2019, I now feel like my normal self. I usually live symptom-free, but some days still experience headaches and brain fog. I’ve learned how to manage, when to take it easy, and when a run will likely relieve persistent fogginess. I understand how daunting the PCS healing process can be and the intense frustration of setbacks, but I take solace in knowing that my experiences have directed my goals. For anyone struggling with PCS, I hope you can find peace in your resilience and feel confident that one day you’ll feel like yourself again.

Lauren Wong’s story

As a senior in high school, college gymnastics seemed like an exciting next step in my athletic career. I was ready to take on the NCAA and planned to compete all four years as a consistent member in the Cornell University lineup. However, that all changed in January 2015 during my freshman year. I was at practice when I was on the floor performing a round-off back handspring double pike when I over-rotated the landing and smacked the back of my head on the floor as I rolled backwards. Initially, I felt fine and was adamant that I could continue with practice despite our trainer’s concerns. As the day progressed, I started to feel more and more out of it. My balance felt off, I was seeing double, and I was having major difficulty concentrating. After another hour or so, I was crying for no reason and complaining of head pain and the bright lights aggravating me. Another few hours passed and I wasn’t able to walk without assistance. My memory is still extremely fuzzy on the rest of the day’s events. I was out for the rest of the season and had to drop all but one of my classes. Recovery was extremely slow, and I didn’t start to feel like myself again until the summer.

By fall of sophomore year, I was feeling back to my old self after months of rest and recovery. Unfortunately, I suffered three more concussions throughout my collegiate career; one each academic year. Although each concussion decreased in severity, my Post-Concussion Syndrome (PCS) worsened, and after my third concussion, I began having visual problems and could not see properly. I started vision therapy and received special glasses to wear while studying. However, I wasn’t able to continue treatment due to travel difficulties and balancing therapy while still taking a full course of classes and gymnastics practice.

In 2018, I graduated from Cornell University and returned home to Los Angeles, California. I was still suffering from constant headaches, fatigue, and adverse reactions to blinking lights so I sought out treatment again. I figured being in LA with so many great universities and sports teams in the area it would be easy to find a doctor who understood my symptoms and could provide me with the appropriate treatment. Unfortunately, I was wrong. I went to my primary care physician and even a concussion clinic from a well-renowned university hospital. Both doctors told me that it was impossible for me to still have symptoms from my concussions and that I simply suffered from migraines. They gave me various medications and sent me home. These medications obviously were ineffective, and I was feeling utterly defeated; crazy that I was still having symptoms, frustrated that no one believed what I was saying, and hopeless that I would ever feel relief from my symptoms.

Fortunately, I have a great support system of friends and family that believe my symptoms and that I can get better. Because of their support and by hearing other’s concussion stories, I am motivated again to start finding treatment for my PCS. I currently still suffer from many symptoms but am searching for new treatments available near me and am hopeful that I will return to my normal self! I have learned it’s never too late to start looking for treatment and you are not alone. There is an amazing community here that believes in you and supports you so don’t give up and keep on moving forward one day at a time!

Why we created the Resilient Minds 5K

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Please join us for the Resilient Minds 5K or support us by donating to CLF!

Posted: August 5, 2020

Concussion. A word I don’t want to say for the rest of my life. But that’s just not the case, because I’m about to say “concussion” a whole lot in this story. I wouldn’t wish a concussion on my worst enemy… well maybe my WORST, worst enemy…

So how did I get my concussion? It was September 2019. Yes, September, as in nine months ago! I went to a theme park I’ve never been to with the intent of having a jolly ole time, but unfortunately it didn’t end up that way. After having a few snacks and riding some rides, my boyfriend Frank and I decided to go on this interesting looking roller coaster. It looked different, but I didn’t think much of it. I looked at the safety warnings, and they were no different than any other roller coaster I’ve been on.

We got on the roller coaster, strapped in, got the over the shoulders seat secured, and the ride began. The coaster started out normally and went up for the drop. It dropped, and immediately went directly back up and BOOM my head and neck thrash back causing my head to hit VERY hard against the headrest. I felt an immediate blow to my skull, with an intense sense of pain right away. I wanted to get off the ride immediately, but unfortunately this was only the beginning. The whiplash motion happened a few more times, each time my head slamming against the headrest. After the last drop, which was the highest drop of all, the roller coaster took a few rough upside-down turns, slamming my head even more, and at the last loop, we remained upside down for a few seconds. Fun, right?

So, the ride finally came to an end, and I got off and immediately felt like a huge bag of sh%t! I was nauseous, dizzy, and obviously in a ton of pain. I took a seat to rest for a while. I put ice cubes on my head, neck, and body to kind of wake myself up (I didn’t pass out, I just felt extreme fatigue like I wanted to go to sleep). It never occurred to me this could possibly be a concussion. I had never had a concussion before so it didn’t cross my mind that a roller coaster could cause a brain injury.

Frank took this picture moments after I hit my head:

This picture where I look sad, angry, and in pain is exactly how I was feeling. And yes, those are tears forming in my eyes. To be honest, I don’t remember much of the day after this. The next day, Frank and I had plans to fly out to LA to film a quick project. I woke up that morning feeling like absolute crap, but we stuck with our plans because I thought the pain would pass. On our ride to the airport, I felt extremely nauseous, like I was about to throw up. I honestly thought I was feeling this way because I ate junk food the day before, but looking back, I was clearly feeling nauseous because I had a brain injury.

Days went by, and I still had a horrible headache. Weeks passed, I still had a horrible headache. A month went by, and surprise, I still had a horrible headache. It wasn’t until my older brother, Dewey, told me I could possibly have a concussion. At this point, about a month after my head injury, it still never crossed my mind that I could even possibly have a concussion. When I think of suffering a concussion, I think of being in a car accident or being punched in the face or getting knocked out or being thrown off a Hell in a Cell… not riding a roller coaster. I’ve been riding the biggest, tallest, most intense roller coasters across the country since I was in first grade (yes, I was tall enough even at 6 years old). Over the past 20 years I’ve ridden hundreds, if not thousands, of roller coasters and I have never had any type of issue or injury.

Right after Dewey told me about the possibility of a concussion, I did a simple Google search and it turned out I had almost every single symptom of a concussion. I finally got an appointment to get my head checked out. Right away, the doctor confirmed it was a concussion and ordered physical therapy sessions and also ordered an X-ray of my neck because the doctor could feel my neck was very stiff. The X-ray came back that the cervical spine in my neck was curved backwards, most likely as a result of the whiplash of the roller coaster.

I can count on one hand how many times I’ve driven at night in the past nine months. And when I’m in the car at night, with someone else driving, I have to wear sunglasses and completely cover my face with a jacket, blanket, or hat. As far as sounds, it feels like I have the hearing of an owl (fun fact- owls can hear the heartbeat of the mouse 400m away). Well maybe my hearing isn’t that intense, but it is still super-dee-duper sensitive. From the vacuum, to the TV, to my little brother talking too loudly, to my dogs barking, sometimes it feels impossible to escape the sounds. So that’s why I have earplugs next to me at all times so I can just pop them in if the noises are too overwhelming.

The back of my head is still extremely sensitive to touch. Even when I’m trying to go to sleep, it hurts to put my head on the pillow, so I have to readjust a lot to find a way for my head to be comfortable. Also, every time I’ve been in the car, I have not let my head even touch the headrest, just in case we hit a bump or hit the brakes a little too hard. I just cannot risk my head even being slightly hit. I’m scarred from headrests, literally.

Aside from the obvious pain that comes with concussions, I’ve also been suffering mentally and emotionally. In simple terms, I’ve been a mess. Not a hot mess, not a cute mess, just a straight up MESS. Basically, every single one of my emotions has been heightened and amplified. I’ve been through periods of depression throughout this whole concussion journey. I’ve had mental breakdowns, meltdowns and panic attacks; some of which happened in public.

One of the very last times I was in public, before the pandemic, Frank and I went out to this nice restaurant for dinner. They sat us at a really nice table, but it was right under a bright light, so we had to move tables. We sat down again at a dimmer lit table and as we were looking at our menus, a big party sat down next to us. Right away they started taking pictures with flash! My mortal enemy! And by the fourth flash I internally started to freak out. I grabbed my stuff, told the waiter I have to leave (he was very confused) and I essentially ran out of the restaurant leaving Frank behind. And then I let it all out in the stairway (my tears). It really sucks because everywhere I go, I have to be on alert of bright lights and loud sounds, even at places like restaurants. This certainly wasn’t the first time I had to leave something because of lights, cameras, or loud noises. Do you know where it happened a lot? The Disney Cruise I just went on a few months ago.

I booked a Disney cruise back in October, one month after my concussion. After a little research, I found that most concussions last one to two months, tops! On average, concussion symptoms typically last only a few weeks. The cruise was booked for the end of February and I thought “There is NO way I could possibly still have concussion symptoms by then.” Boy was I wrong!

I was looking forward to this cruise so much! I’m a huge Disney fan, and I haven’t been on a Disney cruise since I was in middle school, so I was just really excited to feel happy for once… but it did not turn out that way. The morning of the cruise, I was feeling horrific; even worse than normal. Most likely due to a few restless nights before. Basically, sleep is the only thing that helps me, and if I don’t get enough sleep, it’s going to be a very, very bad day.

We get on the cruise, walk around for a little, eat some lunch, and all I want to do is lay down, even on this gorgeous cruise ship. I felt so horrible that I missed dinners, shows, and even the Pirates of the Caribbean dance party. I basically missed every fun activity on the cruise ship because my head could not tolerate the pain and I was internally miserable (despite what my Instagram looked like). Most of my Instagram pictures in the past nine months have either been throwback pictures or me just putting on a fake smile.

Here is what I actually looked like on the cruise:

It is a very scary thing how much pain a smile can hide. Not just in pictures, but in real life too. I put on a smile for other people when the last thing I wanted to do was smile. I just don’t like to be a downer or bring down the mood of others, especially while on vacation. I do feel bad for Frank because he missed out on all the fun activities of the cruise because he mostly stayed with me.

In the beginning of my concussion journey, I could barely talk or smile because I was in so much pain and it was honestly exhausting to put much energy into something as simple as grinning and speaking. Over time, I got better at talking and smiling, not because I was feeling better, but because I got better at hiding it. The average person would never suspect I was in so much pain underneath my smile.

So that’s how my concussion has been going. I’ve been trying several different treatments for my head, but nothing seems to actually help. I’ve tried physical therapy, acupuncture, electrotherapy, cupping, breathing exercises, extremely deep neck massages to help break up the pressure in my neck, flotation tanks, SOS manual therapy, herbal medicines, eating healthy, and taking supplements.

I’ve also been resting a ton; I was self-quarantining even before this pandemic, despite it looking like I’m living my best life on Instagram. I didn’t leave my house or wash my face for three weeks in January. That was where I was at, just no motivation for anything. I’ve cut down screen time on my phone and computer, I stopped emailing companies, which has made me lose a lot of work. I’ve cancelled fun plans and trips. I haven’t been able to work out in nine months because it makes me feel even worse. I’ve basically stopped life. And I’m sure a lot of you are feeling the same way right about now because of the current situation of our world. I want to continue to try out other treatments, even the most outlandish ones, but it’s been hard the last few months with places being shut down, and I don’t want to put myself (or my family) at risk if I were to go to clinics that are open. I’ve recently been trying to manage the pain with monthly migraine prevention injections. They hurt way worse than any other shot I’ve had, and I have to do the shot myself. Some days it helps, other days it doesn’t… at all.

There are a few reasons why my concussion symptoms are lasting so long. One doctor told me that I could have sustained multiple concussions, a cluster of concussions, while riding the roller coaster. Each time my head slammed on the headrest could’ve been a new concussion. Another reason could be because of the curve in my cervical spine being backwards, therefore putting extra pressure on my neck, not allowing enough circulation and blood flow to go to my brain. I have been trying out different ways and supplements to increase blood flow to see if anything helps.

I recently spoke on the phone with Olympic Speed Skater, Carlijn Schoutens, who also suffered from Post-Concussion Syndrome for nearly a year. It was really nice to talk to someone who shared some of my exact struggles and knew exactly what I was going through. It definitely helps to speak to someone who has been in a similar position. I know what you’re probably thinking right now… “what about your dad?” While my dad has suffered many concussions throughout his wrestling career, he said none of his concussions ever lasted this long. It’s hard for him to give it advice other than just rest and take it easy, but he did connect me with Chris Nowinski, Ph.D. who is the CEO of Concussion Legacy Foundation, and he helped me find the correct clinics and doctors to go to.

Not only has this concussion affected my life, it’s affected my family and loved ones’ lives too. I can tell my family is super annoyed by me and my concussion. They say they have to live their life under Noelle’s rules… which is kind of true! Noelle’s rules include: no bright lights! If they turn on any lights, they have to let me know before so I can take cover and close my eyes, and same goes with turning off lights. No loud noises, so they need to keep their voices low, keep the TV low, and prevent my dogs from barking at all costs. Sometimes they have to help me take food out from the fridge because the fridge lights are way too bright for me.

I cannot wait until the day where I can be headache free and not force a smile and drive at night, and take pictures with the flash on, and just be happy. All these things I’ve taken for granted my whole life. I really cannot wait until all the pain is gone, because this is truly ruining my life.

Every day is different for me. Some days I’m OK, and some days I feel like I got hit by a train. Some days I feel completely defeated by my concussion, but I still have hope that there are better days ahead. And if you’re reading this and you are also suffering from a concussion or anything else going on in your life, just know that things will eventually get better, even if it takes a long time. You just have to stick with it and think positive thoughts, and not give up!

If you’re interested in being connected with a mentor like Noelle was with Carlijin, if you need help finding a doctor, or if you want to learn about evidence-based treatment options for your symptoms you can submit a request to the CLF HelpLine. A dedicated staff member will point you toward resources to help in your recovery.