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?”

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.

Coping With Good News

I am finally getting the one thing I’ve been wanting.

For the last five and a half years, I have lost myself trying to find answers. I have put every fiber of my being into continuing to move forward. When I could, I truly lived, and when I couldn’t, I turned robotic.

Everyone who has faced severe illness or injury knows the switch. It is a magical button developed as a defense mechanism to protect us. It is archaic, intrinsic, instinctual. When we deal with truly scary things, we develop this ability to turn off what isn’t necessary for survival. We shut down things like emotions, reflection, and thinking. Our bodies says we cannot deal with that right now and survive. So we don’t deal with it, and we fight like hell to survive. 

I found a doctor who can help me. I found two, actually. I am getting the answers I have been searching for so desperately, and I feel like I’m slipping. 

No one talks about the grief that can come with good news. There is grief in meeting yourself where you are at. There is grief in the realization of how sick or hurt or tired you truly are. There is grief in the reflection of how far you’ve come, how hard you’ve fought, how much you’ve lost along the way. 

When we have to fight for ourselves for so long, releasing that fight can be so much harder than sounds.

“Releasing that fight can be so much harder than it sounds.”

"Releasing that fight can be so much harder than it sounds."
Photograph of a girl standing before the Pacific Ocean, wind blowing a blanket back behind her like a cape.

It’s like I’ve been running a marathon. And it’s entirely uphill. So I have tuned out the pain in order to make it through and I have fallen into a rhythm. The rhythm is all that there is. It is what’s keeping me alive. All I know is that I need to keep moving forward. And then someone offers me a ride. And I am so grateful, because the ride appears to be my only path in the right direction. But as soon as I sit down, I realize how much pain my body is in. I feel sick and nauseous and my muscles all seize. I am no longer in the zone, merely trying to survive, and now I feel it all. 

It is important to note that this ride will not carry me through to the pain-free zone. There is hard work ahead of me, some of the hardest I have yet to do. Without this ride I may not have hope of making it to the end, but I will have to finish the race myself. I am just lucky enough to have a team cheering me on, handing me water bottles and power bars along the way. 

"And now, I feel it all."
Pencil-drawn typograph face of a girl, emotions lining her features.

“And now, I feel it all.”

My body has been fighting for so long that as a hand extends to help me clear the brush and forge a path forward, I have begun to crash. My pain is at an all-time high. My tolerance is at an all-time low. I get overwhelmed instantly, sick and dizzy before I even step foot outside. My body is trying to catch its breath, but I am not yet to the part where it can recover it’s breath. 

I know that I am predisposed to this “feeling it all” feeling. I have always been a very sensitive person. I am deeply in tune with my body, which comes as a blessing and a curse. I trust my body above all, but I also feel everything. 

For example, I’ve dealt with joint pain for awhile. But joint pain is so obscure. Pain in general is so obscure. Is it coming from my brain and manifesting in my body? Is there actual damage? With my switch turned off, I didn’t — couldn’t — think about what this meant. But now, after seeing ultrasounds of the damage in joints that cause me the least pain, I can’t help but think about the destruction done to the joints in my body that are really crying out. 

Now that my reservoir has the tiniest trickle of energy to visualize, I am feeling everything so much more acutely. I feel the inflammation in my veins. I feel the cysts in my thyroid. I feel the swelling of my salivary glands. The imagination is a powerful tool, even when it works against you. 

“The imagination is a powerful tool, even when it works against you.”

Pencil drawing of a thermal scan of a female depicting inflammation in her vascular system representative of bartonella.
A recreation of a thermal scan showing the inflammation in my vascular system.

So much information is being thrown at me right now. I went from no answers for so long to all the possible answers, and it is extremely overwhelming. I have such little energy to process. For me, it has felt like a near-tipping point. I feel like saying to my doctors, my body is at max capacity, falling into your capable hands, and I can’t take any more information. But that is not quite how the process works.

And the guilt. I am so grateful, but I am not happy. Everyone is so happy for me, and I feel ungrateful by expressing that I am just not there yet. In fact, I haven’t been able to express the feeling openly. But the reality is that I am depressed and anxious as my loved ones cheer in relief.

But that is okay. My body is finally allowed to take a break, and it is crashing. There will come a time when I can close my eyes, think about it all, and a feeling of warmth will flood my body. But right now, all I get is a wave of nausea. I am so grateful, but I am not happy…yet. 

Photograph of a girl silhouetted sitting on rocks in front of the Pacific Ocean in the fading light of sunset.

“I am so grateful, but I am not happy…yet.”

No matter who you are, the human body can only take so much. So if you are at that point in your journey, the point where you are being given answers and just feel worse, it is okay. It is okay to be sad. It is okay to be overjoyed. It is okay to be anxious and depressed and elated and afraid all at the same time. It is okay to feel however you need to feel. It is nothing to be guilty about.

There will come a time when you and I will feel relief and joy and excitement as we see the faint glow of light at the end of the tunnel. We can be grateful, and still not be thrilled. And someday, in the not too distant future, as treatments come together and we settle in to this new routine with all of this new information, we will be able to feel the joy we deserve. 

Out There

I climb 

Each step higher a step wiser

Golden hills glint flaxen 

A wispy hand in the clouds reaches down

to brush the cheek of a proud green peak

My path is carved by trunks

solid and peaceful

old souls cocooned in bark  

Wind roars 

like the fire in my soul

flames fed by an untouched world

Out there I am infinitely small.

I frolick

Rainbow droplet spray off my worn rubber boots

I turn wild with the flowers grown thick wherever they wish to take root

Movements light 

Smile easy 

A turn onto a dirt road

Gravel scatters in the wake of adventure 

Spontaneity a loved one 

as the future unfurls it’s wings and takes flight before me 

Out there joy seeks me out. 

I fly

Twin arcs slice

angles calculated

hip reaching to kiss the snow 

Load and release 

a zing forward

a burst of speed

pure unbridled adrenaline flows 

Board slices through water

cutting sharp lines 

A shadow

one with nature

flirts with the depths  

A whole world watching from below 

Controlled breath

racing heart 

a craving to find more

dig deeper 

push harder 

faster 

farther 

Innovation the new game 

Out there I strive for my best. 

I amble 

Journey eclipses destination

Each moment unique

individual

worthy of attention

A keen eye catches details 

an open heart captures them

A search with no goal

A path with no end 

An idea with no expectations 

Relishing time that cannot be re-spent

Here

Now 

Out there I simply exist.

I laugh

Each second a gift 

I choose to elevate

not deteriorate 

A twinkle of the eye

more brilliant than the sun itself 

A crinkle of authenticity pulls reciprocation from strangers 

A beam of light 

shining 

heals the world one smiling face at a time 

Out there I am free.

I rest

Laying under the stars 

Mother Earth runs her fingers through my hair 

The sky winks

painting a picture of the millennia 

A story playing out before my eyes 

close enough to touch

yet infinitely far away 

A snapshot in time 

Pulse slows  

Out there I am at peace.

I dream

Smile playing on lips

as I imagine

infinite possibilities

wide open for those who chose 

Chose to defy

Chose to let go

Chose to be brave 

Anywhere 

Anything 

Forever searching for the next adventure 

Ambition revving

like the engine of an old truck

Heart racing at the mere thought 

of adventuring once more

Out there is where you will find me.

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.”

Dear Ocean,

My dad used to ask me, “If you could choose either the mountains or the ocean, which would it be?”

I knew his choice was you, ocean, but at first, mine was mountains. Mountains meant skiing, and as a ski racer, mountains were, and still are, a part of my identity, a chunk of who I am. But as I grew older and my fascination with you expanded, I found my answer coming in closer to a tie. When visiting you, it took me more and more time to say goodbye each time I left. 

The more I get to know you, the more I wanted to spend my life getting to know you. I want to discover the secrets you hold, the life you breathe into this planet. I want to live out there, just you and me and the breeze filling my sails in a big, blue, endless world of our own. 

“Just you and me and the breeze filling my sails in a big, blue, endless world of our own.”

A sailboat sails off into the sunset on the Pacific Ocean.

I go to you when I lose myself in order to find my way. You sing me your song, again and again, crashing against the rocks, wave after wave, until your message is pounded into my head:

Let go.

Let go.

Let go.

Let go of the negativity. Let go of the future. Let go of what you do not have control over. Let go of the weight you carry with you, and the duty you feel to appease others. Let go. Let go. Let go. You remind me that I am free. You remind me that I am alive. 

A pencil drawing of a wave crashing powerfully, letting go of all that it cannot control.

“Let go.”

There are days when you are calm and there are days when you are angry, but you are always beautiful. True beauty is not dependent on showing up the way others want you to, but showing up exactly as you are. 

The mountains may be a part of who I am, but you remind me of who I am. You take me exactly as I am, in whatever state I go to you in. When I get too proud, you knock me down. You keep me honest and on my toes. It makes every one of my cells sing just looking at the power building beneath your churning depths, your muscles rippling under foamy crests as you curl the weight of the world.

And then you let it go, releasing your hold and need for control just as you are teaching me to do. Only you can enrapture me so intensely, the mystery that you are, the sorcery that you seem to conduct. Only you can be at once so dangerous and comforting. 

You calm, lapping gently at my feet, caressing my ankles as you swallow my broken tears in the dark. When I dive into you, you accept me willingly, wrapping your arms around me and stealing my breath away. And for one weightless, shocking second, you are all that was, all that is, and all that will be.

“You are all that was, all that is, and all that will be.”

The sun setting on the seemingly endless Pacific Ocean.

And when I shatter, you heal me,

one

jagged

piece

at

a

time. 

“The tides are in our veins.”

~ Robinson jeffers
A photograph of the setting sun over the Pacific Ocean and a rock with a tiny figure perched on it, transfixed by the ocean.
A tiny me on my non-thinking rock.

Love, 

Ella

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

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