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. 

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.

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.

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.