TBI – Chronic Courage

6 Year Reflections

On this day six years ago, I got my first concussion playing middle school soccer. Little did I know at the time how it would change my life forever.

Today is my 6th concussiversary (a word I created to mark my concussion anniversary). This time of year is usually quite hard for me as I look back on all that I’ve suffered and lost since that fateful day. It is a day usually surrounded by feelings of grief and a level of helplessness — helplessness at the lack of understanding, the lack of answers, the lack of forward progress.

The brain is a very complicated organ. While there are a number of brain-related specialists, they all deal with small corners of the greater picture. Concussion specialists deal with acute injury and inflammation, neurologists with permanent structural alterations, and chronic pain specialists with managing symptoms.

The Western medicine route did not work for me, and alternative medicine did not provide me enough relief. My concussiverary marked simply time passing — sure, an homage to my continued strength, but it long ago stopped feeling like a reflection of healing. Until now.

(Read more about my TBI journey here.)

“This year, there is a flicker of hope amid the grief.”

Photograph of a blazing orange sunset through coastal underbrush and plants.

"This year, there is a flicker of hope amid the grief."

This year, there is a flicker of hope amid the grief. For this is the first year that I know the full story. This is the first year I have answers. I now know that my concussion likely triggered underlying Lyme disease and co-infections. I was continuously told by doctors that “sometimes concussions just take a while to heal,” month after month, year after year, with no forward progress. I am now filing in the gaps of all of the symptoms that never quite made sense back then, that I attributed merely to the fact that our brains affect so many of our bodily systems.

I now understand that the persistent low-grade fever that spikes during migraines, the extreme heat intolerance, the face rash, the night thirst, the blood sugar swings, the easy bruising and the inability to heal were all manifestations of these underlying illnesses. For years I would try to explain to people how my pain sensitivity would “cycle” to the point where at it’s worst I couldn’t even hold a hot cup of coffee. I now recognize these as small flareups of my underlying conditions.

Watercolor painting of a stone path winding through a wooden arch in a fence, windflowers all around.

"There is a path forward."

“There is a path forward.”

(Read more about my diagnoses here.)

I’ve found that many “survivor” communities across a variety of illnesses and traumas tend to be quite niche. Having originally been diagnosed with a minor concussion, I never really felt quite like part of the hardcore TBI (traumatic brain injury) community, even as I found myself in a similar rehab position five years down the road as someone with a potentially more serious original injury.

And just as I began to accept my post-concussion journey as a TBI, I learned that tick-borne illnesses played a major role in my story as well. At first, I felt pulled and pushed in my mind between the two communities. I felt self-outcast, like I didn’t really “deserve” to be part of either. I didn’t feel like part of the TBI community because it wasn’t just a brain injury that upended my life. But I had (in my mind) only been truly “sick” for less than a year at that point. I felt like the two were mutually exclusive, and therefore felt excluded from both.

But I soon realized that it doesn’t have to be this way. I had a brain injury. I struggled (and still do) for years with post-concussion syndrome. I also have had Lyme and co-infections at least since that injury, probably dormant for many years prior. I can allow myself to be part of both communities for the full six years I’ve been fighting both. It doesn’t need to be one or the other. Plus, it is not uncommon for a concussion or another trauma to trigger underlying Lyme.

At the end of the day, I believe that while it is nice to connect with people who have parallel stories to ours, our experiences on this planet are all so unique, and yet in essence all very similar. Similar perception, similar feeling — that’s what we connect over. Emotions tie us together, and the emotions experienced across many illnesses and traumas can bond us in this shared human experience. Chronic illness, autoimmune disease, tick-borne illness, brain injury and more — we can all find value in connecting with each other and finding parallels in our stories.

Today, the constant headache I have still spikes into the worst pain I experience. And I may be more unwell now that I have been on any past concussiversary, but I have fought my way onto a road to health. I am no longer sitting in a field, search desperately for wildflowers. There is a path forward. There is still grief for all that I have lost and suffered. But the hope is there, burning low and persistent. Sometimes it has to get worse before it gets better. And with my support system behind me, I will continue to put one foot in front of the other towards reclaiming my health.

“The hope is there, burning low and persistent.”

Photograph of the author standing before a snowcapped Mount Shasta, glowing purple in the evening light.

"The hope is there, burning low and persistent.:

Please Note:

We can all grow and improve and heal in some way, even just in micro amounts. I believe that an additional aspect of the hope that I am feeling this year has to do with the emotional healing I have done, and continue to do, over the last year.

If you have a brain injury with no underlying conditions, I want you to know that there is hope to be held in your heart too. Physically speaking, our brains are beautiful and neuroplastic and we can heal for longer and far later than doctors once believed. Keep pushing, keep searching. Even if it is just our outlook on life, we can improve our own lives. Don’t give up on yourself. You are worth it.

If you would like to know what I tried along my journey, please reach out and I am more than happy to share.

My TBI Story

March is Brain Injury Awareness Month. In honor of a cause that holds a very special place in my heart, I have decided to share my own TBI (traumatic brain injury) story:

I skated up to the lift on shaky legs, sitting down harder than I intended as the seat hit the back of my knees before I could react. My heart beat fast, as if in anticipation of something. Rays flickered down on my face, filtering through the pine needles as we climbed. I put my goggles down. I put them up again, winced, and put them back down. I knew. I didn’t need a doctor to tell me or anyone else to confirm my fears. I just knew.

Three years prior in October of 2016, I was warming up for the last soccer game of my eighth grade season when I took a shot to the right temple. I was only thirteen years old. Little did I know that my life had just changed. It was diagnosed as a minor concussion, my first. But as time moved forward, my progress did not.

I distinctly remember one moment early on in my recovery when I emerged from my hobbit hole of a dark room. My brother had brought me something and tossed it to me from a foot away. In that split moment between his “head’s up” and his toss, I panicked. Startling, my hand closed on empty air. I was a lacrosse player. I was a coordinated athlete. I could catch things — one-handed — lefty — in my sleep. Who was this person that had taken over my body?

“I was a coordinated athlete…Who was this person that had taken over my body?”

Photograph of a teen girl play lacrosse.
"I was a coordinated athlete...Who was this person that had taken over my body?"

Photograph of a teen girl ski racing GS.
"I was a coordinated athlete...Who was this person that had taken over my body?"

I struggled with a constant headache, spikes of migraines, light sensitivity, sound sensitivity, and countless more symptoms on a daily basis. I was in and out of specialist’s offices from sports medicine to neurology, on and off of medications that gave me every side effect from depression to tremors, all while juggling high school. Sports were my sanctuary, and even my participation there fluctuated day by day, season by season. I spent years barely scraping by, talking myself through life, hour by hour.

Which brings us to my opening moment. My biggest fear after my first injury was hitting my head. I truly believed that I wasn’t strong enough to do it all again. Then, on February 12th, 2020, just over three years after my original brain injury, I crashed ski racing in Maine, shooting into the ground at 40 mph, sliding headfirst through the next gate. I do not remember much of what happened, nor much of the weeks that followed. I feel blessed to have walked away on my own.

So there I was, riding up that chairlift, skating to my team, keeping a hand firmly planted on my teammate’s shoulder to keep my balance, mixing up the location of the accident. Looking back, it feels like a dream. I was sleepwalking.

But the sharp stab behind my eyes tells me otherwise. I have additional vision issues now. When I am tired my right eye droops, not tracking with my left. I struggle with screens and reading. I run into doorways. Every minute of every day, I have a headache.

After the second accident, it took me a month to let myself fully grieve. I was petrified that if I let myself feel, if I let the walls crumble and I fell apart, that I would never be able to pick up the shattered pieces. But I did, painfully, piece by piece.

Pencil drawing of a girl's face made of a puzzle, one piece left to be places, representing the struggle of piecing yourself back together after a brain injury.
"But I did, painfully, piece by piece."

“But I did, painfully, piece by piece.”

For a while, I lost a part of myself. I was forced to give up things that were parts of my identity, some of which I haven’t gotten back. I struggled in school with simple problems, I couldn’t follow a conversation, I missed the jokes. I had to reconcile the fact that I am not the same as I was before, and I can’t go back to that person. All of this – twice. After my first injury, I found my new normal. I got back up off the ground for the world to lay me flat again. I have to once again make peace between who I was and who I am.

It is in this that I found LoveYourBrain and Concussed. For so many years, I told myself that post-concussive syndrome and traumatic brain injury were two very different things. I cut myself off from the TBI community because I didn’t believe that I deserved to be there with my “minor concussion.” But it wasn’t a minor situation. And slowly, I began to open myself up. Thanks in part to both LoveYourBrain and Concussed., I continue to do so.

Sometimes I wish that I could have insignificant teenage problems, like figuring out what to wear or who my friends are, but that isn’t the hand I was dealt. My injury happened at such a young age, when one is discovering so much about themself, that I truly don’t believe I would be the same person if not for my injury.

And I love the person that I have become. My injury taught me patience and self-love and resiliency. It taught me that life is not fair and that I won’t always have control over the important things and that bad things happen to good people without it being punishment for something. I learned that the athlete, buckle-down mentality I’ve always had is not to be at the expense of my health and wellbeing. (Read more about this here.)

“I love the person that I have become.”

Photograph of a girl looking out over trees on a hike in a baseball cap, laughing and smiling comfortably.
"I love the person that I have become."

Now, over five years later, I am grappling with my future. As I apply to college, I ask myself whether my brain will be able to handle the science- and math-heavy paths I am interested in. I struggle every day with the idea that I have so much of my life ahead of me, and yet that many decisions I make will most likely be impacted by this injury. But not all of them will be.

I have recently started journaling. In the morning I write down three things that I have control over, three little things that I will choose to do that day. At night I write down three tiny moments that brought me joy. I am working to focus on the aspects that I can control. (You can read more about my journaling here.)

People say that there is a light at the end of the tunnel. But what if it isn’t a tunnel? What if it’s a deep, dense forest, but you don’t need to make it to the other side? What if all you need to do is find the glints of sun through the trees? Listen to the birds chirp and find the little bits of light in your life. It is a process, but you don’t need to make it to the end of the tunnel to find happiness.

Photograph of light shining through tree branches as a metaphor for finding the light through the darkness.
"Listen to the birds chirp and find the little bits of light in your life."

“Listen to the birds chirp and find the little bits of light in your life.”

There are two traumatic brain injury organizations that are very close to my heart. In honor of Brain Injury Awareness Month, please consider donating to LoveYourBrain or Concussed. foundations. I am not affiliated with either, but they both mean a lot to me. Donations go to supporting TBI survivors and caregivers in acquiring resources, continuing research, and sponsoring individuals to go on TBI retreats. As someone who has attending such a retreat, I can tell you firsthand that it is a life-changing experience. Thank you for considering, and Happy Brain Injury Awareness Month!

_{disclaimer: partially adapted for a college essay.}

Forging Identity

“When a defining moment comes along, you define the moment, or the moment defines you.”
~ KEVIN COSTNER

Many people have a defining moment. Some have multiple. Whether for better or for worse, this moment separates who you were from who you are. In a single second, a fault line cracks, and a chasm appears. There is before, and there is after.

“There is before, and there is after.”

The birth of a child, the loss of a loved one, a proposal, an injury, a diagnosis – these are all defining moments. While they all come with an evolving persona, defining moments of dis-ease can be the most hard to rebound from. You are left bare and wide open, vulnerable and so very lost. For me, a concussion that never healed, a second head injury that compounded the problem, and a trip to the ER. Once the initial shock of such a moment has worn off, there is just you. But who are you anymore?

When your life changes, your identity changes. Some things are lost, some shifted, some paused, and some are gained. But who you are now doesn’t just appear. The things lost or paused leave gaping holes in your heart. You don’t feel like yourself. You don’t really know who “yourself” is. This isn’t me. I find myself saying this in the lowest moments. But this won’t be you forever. You will grow and become and keep adding to who you want to be until you have spun a web that will hold you safe inside.

“You will grow and become until you have spun a web that will hold you safe inside.”

We are a sum of everything that is meaningful to us. When we are forced to let go of some of those things, even temporarily, it can be crushing. Under most circumstances, you can’t just immediately be okay with the losses and no longer claim them as a part of you. Grieving the loss is part of healing.

No, a new identity doesn’t just appear. It must be crafted. You must place yourself in the fire, feel all of your feelings, and forge new pieces of yourself. You must drive the hammer and fight through the messy parts until you are ready to quench the blade and reveal a masterpiece.

A defining moment is an opportunity. An opportunity to dive into yourself and decide what parts of your identity serve you and what do not. It is an opportunity to choose who you want to be.

Carve away the parts of yourself that do not elevate you. I am working to chisel down the perfectionism, the codependency, the overachieving in my life. Like a sculptor to clay, let it fall away. Center yourself like a potter on a wheel. And fill your heart with new things.

“Like a sculptor to clay, let it fall away.”

If I could offer one piece of advice, it would be this. Learn a new skill. Always watched from the sidelines but wanted to try? Go for it! That old hobby that you never had time for until now? Start it up again! As long as you are not putting your health in jeopardy and it is within your power, the sky’s the limit. Any time someone learns a new skill that they are passionate about, they add to their identity. So when you feel lost and don’t know who you are anymore, learning something new can be incredibly grounding.

Since getting sick, I started drawing more. I’ve always loved drawing, but didn’t do it very often. I’ve started writing more too, hence this blog. I’m learning how to surf. It drains my body, but it feeds my soul.

“It drains my body, but it feeds my soul.”

When I feel the most lost and my heart aches for that which is out of my reach right now, any one of these things is a powerful outlet for me. I finally have the time to learn what I really want in life. It is hard and it is painful, but it is worth it.

It is healthy to grieve the loss of your old self. The losses you grieve the most – they will always be a part of you. Just because a soccer player retires, that doesn’t mean they are no longer a soccer player. Just because a hiker moves to the flatlands, that doesn’t mean they are no longer a hiker. What matters is what you hold in your heart. You are the blacksmith of your own life. Let the process happen. Honor your feelings. Know that while you can’t go back to who you were in the “before,” who you are now is incredible and worthy and beautifully whole.

“You are the blacksmith of your own life.”

The Athlete’s Mentality

“If you listen to your body when it whispers, you won’t have to hear it scream.”
~ unknown

I was raised on an athlete mentality. It was not driven by my family, but rather the activities I chose to take part in. It was ingrained in the coaches I had and the kids I surrounded myself with.

From a very young age, I was on the soccer field. You fall down and scrape your knee? Brush it off and keep playing!

I was also in the horse ring. Your horse dodges a jump and you go crashing down on top of it? You get back on, and do it again. Show that horse who’s boss!

As I got older, lacrosse and alpine ski racing soon joined my arsenal. If you wipe out in ski racing, you pop up as fast as you can and hike up the mountain, skis on, to the place you fell, in order to finish with a time.

An athlete's mentality "was ingrained in the coaches I had and the kids I surrounded myself with."

“It was ingrained in the coaches I had and the kids I surrounded myself with.”

As an athlete, I was taught to grit my teeth and push through. And I was good at it. No pain, no gain…right? But what happens when my body says no?

I was 13 when my body first said no. When I tried to brush off a concussion, to push through like I was always taught, my brain shut down.

When I was 18, as a senior in high school, a Prefect, a captain of the lacrosse team, a straight-A student, and a striving overachiever, my body once again said no. I was sent into a tailspin of chronic ailments, from heart rate dysregulation and POTS to debilitating joint pain and exhaustion.

I eventually realized that this was a wake-up call. My body was no longer asking me to listen to it, it was demanding. Where I was once able to stay on top of everything and continue powering through, I now found lights flashing in my peripheries. While I was once able to ignore physical ailments, my body now literally sent me to the ground, gasping for breath when I pushed too hard.

“As an athlete, I was taught to grit my teeth and push through. And I was good at it.”

"As an athlete, I was taught to grit my teeth and push through. And I was good at it." — Photo by Tim Stewart

Although I didn’t know it at the time, this became an opportunity for me. An opportunity to learn how to truly take care of myself, something very few athletes let themselves do. It was an opportunity to learn the tune of my inner self and to listen to her. I had to choose to work with my body, not against it.

So I played sports on and off, day by day, season by season. Instead of ski racing, I coached. I captained my lacrosse team mostly from the sidelines. I let my body rest when it said it needed it. And it sucks that this lesson has to come from such pain, and every day it is a battle, but I show up, and I try.

Photograph of a ski coach skating up to a lift before the sun rises on a race day. — Coaches rise before the sun on race days!

“Every day it is a battle, but I show up, and I try.”

Athletes take their bodies to incredible lengths. It is amazing what the human body can do, but it takes a toll. And that toll looks different for each individual. For me, that toll was too high. I committed with everything I had to the idea that the only way to get better was to push harder. And it nearly broke me.

This is not to say that all parts of an athlete mentality are bad. Mental toughness is one of the most important life skills one can learn. Because of athletics, I know my strength. I know leadership, teamwork, and perseverance. I know that it is never over until it is over. My athlete mentality is the reason I keep fighting for my body every single day.

This is also not to say that we should stay within our comfort zones. Life is not always comfortable. Athletics taught me how to push through that discomfort, to find a path forward through experiences of displeasure. Athletics taught me grit. But grit that gets you through hardships and grit that destroys your body are two different things. Discomfort is okay, until that little voice inside you rings a warning bell.

We need to change the way we view being an athlete. Being a hardcore athlete doesn’t need to mean never coming off the field. Being an inspiring athlete doesn’t need to mean playing through every adversity. Yes, there are times when we brush it off and we get back up. But there are times when your gut tells you something is wrong, and you ignore it because you were taught to pick yourself up, no matter what. If not for yourself, for your team, we are told. But your health matters. Your wellbeing matters. You are no good to your team incapacitated. We need to respect the boundaries that our body places for us. And we need to not cross those lines so clearly set for ourselves.

It is not weak to take a step back. It is not weak to listen to your body. It is not weak to take more time than expected to heal. You are not weak for taking care of yourself.

“You are not weak for taking care of yourself.”

Photograph of lacrosse sticks lined up on the sidelines, taken by a player sidelined by injury. — From the sidelines…

I crossed a line when I didn’t pull myself off the field that day I got my first concussion. I crossed a few more when I rode a horse and then played two different instruments the next day.

I am learning how to respect my body’s boundaries — the big ones, and the daily fluctuating ones. My body said no to college this year, so I listened. Last week I may have played in a full lacrosse game, but if my body says no to practice today, I sit out.

We must learn to read the tiny intricacies of ourselves, the little signals that are so vital to our health. To me, being an athlete was once pushing through the warning bells and achieving anyway, but my definition is changing.

Imagine what we as athletes could achieve if we respected our bodies and gave them what they truly need to succeed . . . what they ask for.

The Power of Vulnerability: This is Me

First Post

We are a combination of what we define ourselves as and what the world sees us as. In our world today, young people tend to put a lot more value on crafting a persona the world will fall in love with instead of prioritizing self-worth and acceptance.

However, both sides of my claim hold equal importance. How we define ourselves holds just as much weight as how we present ourselves to the world.

A photograph of the author looking out a window as a metaphor for being stuck behind the glass of who we really are.

“How we define ourselves holds just as much weight as how we present ourselves to the world.”

For me, the world always saw me as the person I aspired to be. I was driven, hard-working, talented, athletic, quick-witted. I was the “perfect” student, the “perfect” friend, the “perfect” daughter. I was a role model.

But being “perfect” is not sustainable. Something has to give. For me, it was my health: a “mild” concussion I never healed from, and an ever-growing list of chronic illness symptoms.

And yet I fought to maintain the persona I worked so hard to create. I kept pushing my mind and body harder, faster, farther, and eventually, it couldn’t sustain itself anymore. While the world may still have seen me as the overachiever and perfectionist, I defined myself by injury, pain, fear, and loss.

A pencil drawing of a girl with a split face between how she portrays herself to the world and the sickness she feels on the inside.

“While the world may still have seen me as the overachiever and perfectionist, I defined myself by injury, pain, fear, and loss.”

Over time, I came to see that the way I defined myself was not fact, and the way the world saw me wasn’t entirely true either. I am not defined by the pain I endure or the loss I grieve. They are a valid part of my experience, but I choose to define myself by the gifts they have given me: the grit, the perseverance, the strength.

These characteristics were hidden from the world when I chose to hide my story. The more I go through, the more I feel ready to share my experience. I am ready to show the world the full picture of who I am.

At times, it may make me feel weak to share the more vulnerable parts of myself, but that is just the human in me. We are all scared of being accepted when we show who we truly are. I hope that by sharing my vulnerability, I will encourage others to share their most open, honest selves, and show that we all have a voice to be heard.

I am still driven, hard-working, talented, athletic, and quick-witted. But I am also so much more.

I get back up no matter how many times the world knocks me down.

I am a warrior.

I am learning.

I am strong.

I am chronically courageous.