happiness – Chronic Courage

22 Lessons in 2022

2022 has been a wild year for me. I’ve been at my most sick and had some of my physically lowest moments. But I’ve also had moments of the most true, profound joy I have ever experienced, made all the sweeter by the bitter times. This year was the year I got my Lyme/Bartonella diagnoses, found doctors I trusted, started treatment, and did a deep dive into healing. It has been a year of solitude and self-reflection. And I am so proud to say that I truly believe I have grown more this year than in any year before. (Read more about my health journey here.)

So here are 22 of the most important lessons I learned this year. I could not have learned these all on my own, so thank you to everyone who implicitly and explicitly guided me through this brutal, beautiful year.

1. Your path is your own. It doesn’t have to look like anyone else’s to be right.

Going to a New England Prep school, everyone’s path was set up very similarly. But when we hop on this traditional escalator, we often don’t take into consideration what we really want. I’m 20 years old, on my second gap year, and expect college to take me five or more years. And that is okay. Taking time off is okay. Reassessing your priorities is okay. Your healing is also your own and can look completely different from anyone else’s. Whatever your path looks like, it is valid.

2. Feelings are not facts.

When we experience an intense negative emotion, it can feel like the world is crashing down. Feelings can be so powerful. But our thoughts and feelings are not hard facts. Just because we feel like the pain will never end or like we are not worth the effort, that does not mean it’s true. Our feelings are valid, but what they hold isn’t always. When you recognize this, it takes some of the power away from the feeling. Learning to become consciously aware of our feelings and think greater than we feel allows us to rise above our emotions.

3. Now is not always.

Just like how feelings are not facts, how you feel now and where you’re at now is not where you will always be. Just because it’s been a bad day, or month, or year, does not mean that every following day, or month, or year will be the same. Things change. Healing is possible. Internalize that.

4. We must learn to love the parts of ourselves that we do not like.

Let’s face it — we will not always love everything about ourselves. But we must learn to embrace the parts of ourselves that we don’t like, whether we are actively trying to change them or not. I love how deeply I feel. I love how easily I trust. I love how empathetic I am. I love that I am a recovering people pleaser. I love that I am so hard on myself. When we meet the parts of ourselves we don’t like with grace and love, we can soften the judgement we self-inflict and deal with these difficult parts of ourselves much easier.

5. It is okay to outgrow people you still care about.

I believe that people come in and out of our lives to teach us things we need to understand. We all grow at different times and in different ways, and those times and ways don’t always align. It can be so hard and so painful to let go of people you love, but if they are no longer in your best interest, it is okay to take a step back. It is okay to still love them after. And it is okay to mourn their loss while still knowing in your heart it was the right decision.

6. Hope and realism are not mutually exclusive.

I am a realist. And as a realist, I’ve sometimes had a hard time being hopeful. But the two can be felt simultaneously. I can be realistic about where I am at in my health journey and the areas I am limited in right now, and still be hopeful that the little progress I’ve seen will blossom into more. I can be realistic about the state of climate and how much damage we are doing to our planet, and still be hopeful that we can turn things around. Hope is a feeling that you can attach to anything. You can look at things through a realistic lens, in which it may be unlikely that change will occur immediately, and still have hope that something will change. As long as you are not tied to the outcome of your hope, it is a powerful feeling to practice.

7. There is more to who you are than the things that you like.

Yes, the things we like are a big part of who we are. But they are not all that we are. This year I lost the ability to do a lot of the things that I like. And learning who I was when all of the superficial things were stripped away was hard. I felt lost for a while. And then I began to realize that there is so much more to me. I am sensitive and loving and silly, and no illness can take that away from me. In my lowest moments I didn’t have the energy to have much of a personality, but I was still determined and strong and resilient. All of these things are who I am in my truest sense. Everything else will come and go, but when you hold tight to who you really are at heart, you will always be able to find yourself again.

8. Progress is not linear.

There will be ups and there will be downs. That is just the way it is. The more you focus on the little wins, even as things may appear to worsen, the more you begin to see how much progress you’ve truly made. I may be in a very similar physical position to where I was this time last year. But I’m making this list, and I’m so incredibly proud of myself for growing so much in such a short time.

9. You can be going through hell and still have truly happy moments.

When we are suffering, it can be hard to allow ourselves moments of joy. As someone with an invisible illness, I often feel a pressure to not appear happy to those who already don’t see how hard things are for me. But when I have those moments — when I’m having a good day and dive in the ocean, or laugh with my family, or see a whale spout — I allow myself that contentment and happiness. I can also be happy for no reason at all. Having a moment of pure bliss does not discount all of the suffering you experience. It does not mean that things are not hard. It means that you are a fighter that recognizes the blessings in your life. It’s my story, and I’m not going to let anyone else make me feel bad for enjoying the beauty of life.

10. Music can be incredibly healing.

I was never much of a music listener, but this year that changed. I started listening to playlists and finding songs that spoke to me, creating my own playlists to boost my mood. Listening to uplifting music — whatever genre it is that brightens your spirit — is a very powerful thing. There are also certain frequencies of music proven to be calming and physically healing. You can look up healing hertz music or search for songs with 174 hz frequencies.

11. Self-care is a non-negotiable.

I used to always put others before myself. I had so much on my plate that I often forgot to take care of my own wellbeing. But we are not an afterthought. Our bodies are not afterthoughts. Our health is everything, and when we neglect ourselves physically and emotionally, we compromise our health, whether we recognize it or not.

12. You must nourish yourself first in order to give.

Connected to the last point about self-care, we must fill our own wells in order to give water to others. Picture that we each have a bucket. When we give, we give from our buckets. If our buckets are empty, we are giving more than we have. We are giving from ourselves. When life depletes our buckets, we can fill them ourselves through acts of self-care. We can’t give what we don’t have. So we must ensure that we nourish ourselves so that we may give instead of giving first so others will nourish us after.

13. Rest is productive.

REST. IS. PRODUCTIVE. Say it again. This is one of the hardest lessons I learned this year. For so many of us, myself previously included, our worth is tied to our productivity. Well, no more. Even when my body screamed for rest, I used to push through. A lot of kids learn this as athletes and never shake it. But our bodies need rest. Rest is when we replenish. Rest is when learning sinks in. Rest is when we heal. Allow yourself rest without guilt. You deserve it. Your body deserves it.

14. Putting in the work to better yourself always pays off, no matter how hard it is.

Bettering ourselves is not comfortable. But few things worthwhile are always comfortable. Going back into your past to heal, confronting hard truths about yourself, beginning to exercise — whatever avenue of self-improvement you go down, it won’t be easy. But trust that it will be so incredibly worth it. Remember that it is perfectly okay to ask for help. And be proud of yourself for taking the leap.

15. Follow your joy.

The things that bring you joy? Chase them. If something is no longer bringing you joy, whether it be a person, a place, or a job — maybe it is time to reassess. You don’t need anything superficial to be happy. But when you follow your heart, you put yourself in a position of contentment where joy flows more easily. Trust that feeling, and see what amazing things it leads you to.

16. Let yourself daydream.

Dreaming is so powerful on every level. Not only does positive visualization improve your mood, it also triggers neuronal pathways in the brain, helping the neurons fire together that would fire in the real life scenario as well. This can help with improvement in sports, presentations and more, as well as actually changing the neurochemistry of your brain for the better.

17. Setting yourself on fire to keep others warm is not noble.

When we put others before ourselves at our own expense, it is not honorable. Sure, maybe we’re honoring the needs of someone else, but we are certainly not honoring our own needs. This quote — “Stop setting yourself on fire to keep others warm,” hit me hard. I always thought that it was the right thing to do to keep other people warm no matter what. I didn’t even realize that I was on fire until the damage had been done. But while sacrificing yourself may be the noble thing to do in the movies, doing it again and again in real life is not the righteous thing to do. It is just hurting yourself.

18. Your body is so wise. Listen to it.

I don’t think I would be sick if I hadn’t ignored the signals of my body and pushed through for so many years. When we say yes to everything, pushing through our own boundaries and compromising ourselves, our body eventually says no for us. And some of us get very, very sick, myself included. I am learning how to listen to my body and how to trust her again. Our bodies look out for us. They tell us when it is too much, when we need to step back to protect ourselves, both physically and emotionally. Listen to your gut feeling. It will pay off.

19. Vulnerable is the strongest thing you can be.

In our society we are taught (especially men) that emotional vulnerability is weak. And sure, in survival of the fittest, the physically vulnerable animals are more at risk. But that’s not so relevant in our advanced, evolved state as humans. And yet we are taught this anyway, and people put up thick walls. In a world where few people are emotionally vulnerable, I truly believe it’s the strongest thing you can be. Sharing your hardships and innermost feelings is far from easy. Putting your heart out on the chopping block is scary. But it is worth it if you can help even just a few people survive their own struggles. When we are vulnerable, we show others that they are not alone in their silent battles. When we bring the dark into the light, it loses it’s power. And all who put themselves out there in this way should celebrate their strength.

20. All your emotions need to be felt.

Suppressing emotions is not healthy. Lashing out is also not healthy, nor fair to the people around you. But feeling your emotions and acting on them are two different things. When we suppress our emotions, we do not get rid of them. They find ways to resurface, either emotionally or physically, and they wreak havoc. When we feel our emotions, acknowledge them and sit with them, we can process them. Anger, resentment, guilt, pain, despair — these are all okay to feel. In fact, when they arise, you must feel them. Listen to them, sit with them and then find a way to irrigate them. Write, exercise, wiggle, sing, draw, color — let them leave your body.

21. Asking for help does not make you a burden.

The thing I am most proud of myself for so far in my life is admitting that I needed mental health help and finding a therapist. As humans, we can’t go it alone. We need community. We need each other. Asking for help is never something you should be ashamed of. Whether it’s help with mental health, or your homework, or any other number of things, the right people will not make you feel guilty for it. The people you love don’t want to see you struggle. Anyone who cares about you wants to see you succeed. You are not a burden for needing support. We all need help at some point.

22. It is okay to mourn the person you used to be, even as you’re proud of who you’ve become.

Over time, we grow and adapt and change. Our beliefs may change, our hobbies, the people we hold close. There is a lot of loss in growing up and moving on and healing. It is okay to feel that loss. It is not wrong for you to feel grief for your old self, even if you are glad you are no longer that person. I feel a lot of grief for the little girl who had no idea the roller coaster that life had in store for her. But I wouldn’t change the lessons I’ve learned and the person I’ve become through it for anything.

So thank you, 2022, for the tears cried, the laughs shared and the lessons learned. Here’s to a new year of more growth, more healing and more vibrancy. Happy New Year everyone! Wishing you all of the health and happiness.

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.}

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.