Dear Starry Night,

The patron saints of the wayward traveler looked to you to guide their way, ancestors of a culture steeped in respect for you. You lit their path through the inky night. 

You are the original roadmap. Connecting the dots, a finger traces a path through your abyss. 

You are a blanket that expands me rather than constricts me. Beneath your cool breeze I am infinitely small, and yet I am the whole universe. My worries subside under your ancient eye. 

Careful, you warn. Even we do not last forever. 

And when you do burn out, your light remains. You leave the kind of mark I dream of — stoking souls long, long after you are gone. You show me that even the strongest, most concrete fixtures of life are impermanent. You show me that while I am forever small, I am never alone. 

Photograph of the big dipper: "You are the original roadmap."

“You are the original roadmap.”

You are the wisest of them all. You listen to my silent fears and aspirations as I lay below you on the cold, damp earth, grass tickling at the tips of my ears. You are imprinted as a patchwork into some of my most cherished memories. 

And when I am apart, I look up at you, letting your cool light bathe my face and I know that no matter how far, this same light touches the faces of those that I hold dear. 

You are not warm and coddling, but rather incite the strength and passion within us to light up our own darkness, to fight our own battles. You do not champion us, but you quietly believe in us.

“You incite the strength and passion within us to light up our own darkness.”

Photograph of the starry night sky: (You incite the strength and passion within us to light up our own darkness."

A sisterhood of strength, bright enough to light up the darkest of nights, you ease the fear of all. Some connected, some apart, you shine your brightest for all, never discriminating. And even when we cannot see you, when you are hidden and we feel alone, you shine still, promising us that we will see the light once more. 

That is strength. To stand beside one another, solid and proud, and shine your light no matter who sees. You guide my way through the darkness. You show me how to find my own way through the darkness. And when I lose my way, all I need do is look up, and you are there to remind me that I too am made of stardust.

Pencil drawing of a woman's face, hair wild with constellations on her skin: "I too am made of stardust."

“I too am made of stardust.”

Love,

Ella

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. 

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

Drifting Diagnosis-less

“To heal is to touch with love that which we previously touched with fear.”

~ Stephen Levine

We, as humans, like things that have names. We do not like the indescribable. Things that have names have a nice little box that fits in its nice little slot in the universe. With undiagnosed chronic illness, I am free floating in space with no niche for me to cozy into. Living a life without a diagnosis is living a life untethered. 

The thing about our medical system is that they won’t treat what they can not name. No matter the debilitating symptoms that hold you back from living your life, without a name, you are adrift, alone in the fight. 

The needle has become a familiar friend as doctors run test after test until there aren’t any more and they circle back to the basics. I find myself hoping that my numbers will leap out of the normal range, alerting my doctors that no, this is not in my head. As my blood sugar crashes and my heart rate spikes I demand through a haze of pain,  No. There is something wrong. You just don’t know what. 

Shaded pencil drawing of a hand reaching out towards a frayed rope symbolizing when you are past the end of your rope and you are reaching for something to tether you.

“Living a life without a diagnosis is living a life untethered.”

There is no test to measure the shards of glass beneath my feet that everyone else seems to dodge, no test to determine the level of fatigue in my muscles that tire so much faster than they once did, no test to quantify the debilitating exhaustion that binds me to my bed. I know how I feel. But no doctor, no matter how qualified or compassionate, can feel what I feel. 

And so I drift. I find myself suspended in an in-between space. The space between the sick and the actively recovering. I wait for a wave of relief when someone finally gives me a name. That name holds so much power. I wait for the relief because with that name, there is a plan. A plan of how to move forward, how to anchor myself back down to the land of the truly living. 

But while a diagnosis will show me the path to physical wellness, I have spent enough time in the in-between space to know that I can begin to reclaim my power without a name. There are other avenues of wellness. I can listen to my body, and not push farther than it allows. And while I may not be able to heal my body, I can heal my brain. I can take care of my mental health, and send my body love. Through mindfulness, I can get rid of the thoughts that do not serve me, and learn to find joy. This, in itself, is healing. 

“This, in itself, is healing.”

Photograph of a silhouetted girl jumping for joy in the Pacific Ocean with the sun setting behind her.

Sure, I don’t have a diagnosis, and maybe that means I don’t get the medical attention I need just yet, but I am still growing. I may be adrift, but I am collecting pieces of driftwood, and soon I may just have a raft.