healing – Chronic Courage

Three Things to Remember When it Feels Like You’re Drowning in Life

Sometimes life just feels relentless. It feels like an endless sea of suffering, and you fight and fight the current to no avail. Maybe you finally learn to relax and surrender to the flow. Maybe you break the surface. Maybe you think the worst is over, just for a clean-up set to wash through and knock you flat again.

You feel like the lessons have been learned, like you’ve squeezed the lemons and made the lemonade. You don’t understand. Why now? Why more?

First – whether you believe there is a why or not, you don’t need to figure it all out now. You may look back and realize how you’ve grown or how it served you, or the knowing may never reveal itself. Right now, it is okay if it just sucks. Let yourself acknowledge that it is hard. Don’t diminish it or make excuses for yourself.

“Many parallels can be drawn between our existence and the sea.”

"Many parallels can be drawn between our existence and the sea."
A surfer walks along the rocky shoreline of Northern California, silhouetted by the setting sun.

Then – think of the ocean. We describe ourselves as feeling like we’re drowning for a reason. Metaphors run deep with the ocean because we are so connected to it as humans. Many parallels can be drawn between our existence and the sea.

Waves are formed from wind in far off places. The energy of that wind builds into swell as it crosses whole oceans, the memory of a breeze crashing on our shores. Waves come in sets. Sometimes there is a lull between sets. Sometimes the period is long and we have ample time to catch our breath between waves. Sometimes there is chop and we can’t catch a break. Sometimes we know what weather system brings the biggest waves, and sometimes the cause and direction remain a mystery. We’re all just trying to keep our heads above water.

We all have different breaking points. We have different beaches and sandbars and reefs and rocks that change how waves affect each one of us. Our different circumstances determine how hollow the waves are that hit us, how dangerous they are, and how much havoc they can wreak.

"We're all just trying to keep our heads above water."
Surfers sit in the Pacific Ocean as golden light hits the rocks behind them and a wave crashes unridden.

“We’re all just trying to keep our heads above water.”

Luckily, no matter how waves hit us, there are things we can all do.

One

We can learn how to surf. It takes time, and blood, and sweat, and tears, but we can learn how to ride the waves of our minds. We will fall and there will still be times when we feel like we are drowning. But we can lessen the impact of waves with healthy coping strategies, therapy, meditation and more.

Two

When a big set washes through and we get pushed under the surface, we can remember to stay calm. When a surfer gets held under, staying calm and relaxed is the most important thing they can do. In a literal sense, it conserves oxygen, and allows your buoyancy to bring you back up to the surface. It works similarly in the metaphorical. Stay calm, breathe deeply, and the wave will pass. Trust that you will be okay. Trust that you will survive it.

Three

Never give up and never lose hope. No matter how long you’ve been battling storms, you never know what is on the horizon. The ocean is ever-changing. Dozens of conditions are always in flux. And all it takes is a tiny shift of the wind, a few degrees, thousands of miles away, to change everything. A new ripple, compounded energy traveling across the expanse, gaining momentum to create new swell headed elsewhere, bringing you crystal clear waters and a lull to float on your back, sun on your face, smile, and take a deep, ease-full breath.

“All it takes is a tiny shift of the wind… thousands of miles away…”

"All it takes is a tiny shift of the wind... thousands of miles away..."
A crayon drawing of a naked woman lying on her back, floating in ripples of water, golden hair suspended around her head.

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.

6 Year Reflections

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

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

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

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

(Read more about my TBI journey here.)

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

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

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

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

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

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

"There is a path forward."

“There is a path forward.”

(Read more about my diagnoses here.)

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

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

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

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

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

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

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

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

Please Note:

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

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

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

A Bartonella Diagnosis

College decisions came out the same month I knew my Bartonella test was coming back. I was far more nervous about the test result.

Having had virtually perfect bloodwork markers on just about every generic test under the sun, my doctors had little quantitative data with which to make sure diagnoses for me. I was doing IV therapy (which I will go into in another post), but it was more about system support than targeted treatment and it wasn’t working as my doctors had hoped.

I’ve been steadily getting worse and worse, and as I’ve talked about in the past (read here), a diagnosis is vital to know what you’re up against and how to treat it.

So I cannot tell you the relief that I felt, the unconscious tension that melted off my forehead and shoulders when I received that positive result. I was far more elated at that positive marker than getting in to any dream school of mine. Sure I can choose a school, but with this result I finally have a fighting chance of being able to go.

I have a few other diagnoses in the works as well. I have MCAS (Mast cell activation syndrome), POTS (Postural orthostatic tachycardia syndrome), and potential EDS (Ehlers-Danlos syndrome). It is very likely that I have Lyme disease as well, but I have yet to test positive through the generic labs.

I am starting to learn the patience with which you must approach the diagnosing of complex, multi-system illnesses. You can’t address it all at once, so you try to identify the “mob boss” in the room and knock them out first. It takes many different angles of approach, and it may be years before you have a complete list of diagnoses.

All you can hope for is that each beast can be systematically taken down and that you keep feeling better along the way until, eventually, you’re the last one standing.

At this point, Bartonella seems to be my “mob boss,” so I thought I would go into what I know about Bartonella so far. I am learning so much through this process so this is not an exhaustive description by any means, just a basic summary based on my own personal experiences and research.

PLEASE NOTE: I am in no way a doctor, expert, or diagnosing professional. Bring up all concerns with your doctor and confer with them before changing anything in your healthcare plan. Do your own research to obtain the most accurate information about your own diagnoses. Every case is different. This is just my experience.

What is Bartonella?

Bartonella is a bacteria that hides out inside your cells, creating a variety of symptoms characteristic of infection. Also called Bartonellosis, the two prominent strains are Bartonella henselae, or Cat-scratch fever, and Bartonella quintana, or Trench fever. However, there are dozens of Bartonella strains, many of which cannot yet be detected clinically.

Bartonella is an opportunistic infection. This means that when the immune system is working well, the infection can be eliminated without much trouble. But when the immune system is compromised or weakened (read: mold toxicity, Lyme disease, surgery, childbirth, severe flu, intensely stressful life event), the immune system can no longer keep the bacteria at bay, allowing it to grow and spread.

A number of unique properties allow Bartonella to flourish undetected in the body. It can insinuate itself inside cells, hiding from the immune system and antibiotics, making it difficult to both diagnose and treat. My doctor was able to detect inflammation in the lining of my blood vessels from Bartonella on a thermal scan. (Read here.)

How do you get Bartonella?

About 40% of cats carry Bartonella, so a cat scratch or bite can allow the bacteria into the body. Bartonella can also be transmitted by ticks, fleas, sand fleas, and mosquitoes.

Bartonella is known as a co-infection of Lyme disease. Although the two can be mutually exclusive, Lyme disease is becoming more prevalent in the world today, weakening the system for Bartonella and other potentially present co-infections to wreak havoc.

When a tick bites, it can be infected with any number of different tick-borne diseases. These are often regurgitated back into the body by the tick, transmitting it’s contents into the blood stream. This is why it is important to tick-check when you have been in areas with tall grass or trails. If you freeze the tick once removed from your body, it can be sent in to test for tick-borne diseases. You do not need to have a bulls-eye rash to have Lyme disease. The tick does not need to have been attached for 48 hours to infect you. None of this is to scare anyone, but please make sure to bring it up to your doctor if you have an imbedded tick. Doctors will often prescribe a course of antibiotics just to be sure.

I grew up in Vermont and had a number of tick bites there, but I was never treated. We think that I got Lyme and co-infections as a kid, and the concussion that I got as a 13 year old triggered my infections. (Read here.)

It is important to note that although Bartonella is commonly transmitted through ticks, many people infected with Bartonella have no memory of a tick bite in their past. Please remember that ticks are not the only mode of transmission for this disease, and lack of a tick bite should not rule it out as a potential diagnosis.

What Kind of Doctor Deals with Bartonella?

I cannot stress enough the importance of finding a Lyme-literate medical doctor. Often referred to as LLMD’s, it can be incredibly hard to find one, especially one covered by insurance, but they do exist. There are ways to search online through the International Lyme and Associated Diseases Society, and on other sites as well.

Many individuals with tick-borne illness understand the struggle of exhausting the Western medicine circle. I saw just about every specialist under the sun: from concussion specialists and chronic pain specialists to neurologists, endocrinologists, cardiologists, gastroenterologists, rheumatologists and more. And no one was able to tell me definitively what was going on inside my body.

LLMD’s have the skill set to diagnose and treat not just Lyme disease, but a number of complex chronic illnesses that other specialists are just guessing at. They often combine both Western and Eastern medicine to create a holistic approach to your health and wellbeing. What you are dealing with is not all in your head, and an LLMD will confirm that.

How do you test for Bartonella?

Bartonella is most commonly tested for in a simple blood test. Your doctor may elect to use another bodily fluid instead, depending on your individual case.

The problem with most labs covered by insurance (like Quest Diagnostics), is that their tests are not sensitive enough to pick up on most cases of Bartonella and tick-borne diseases. Especially because Bartonella likes to hide out inside cells, it can often go undetected in a normal blood test.

Some specialized labs such as IGeneX and Galaxy Diagnostics have developed more sensitive tests that are more likely to pick up on these pathogens in the body. These tests must still be ordered by a healthcare provider. The downside to these labs is that they are not covered by insurance.

Also, as stated above, there are dozens of Bartonella species, and only a few are detectable at this time. While these labs are more likely to pick up on Bartonella and other tick-borne diseases, they are not foolproof. Some LLMD’s will give a tentative diagnosis based off of symptoms and treat from there. If the treatment works, chances are you have the disease. Treatment can also bring Bartonella and other tick-borne illnesses out of hiding, making them more likely to appear on tests in the future.

My Main Symptoms

Bartonella can affect almost all systems of the body. Because there are so many symptoms that can be consistent with Bartonella, I am just going to talk about my main personal symptoms. Please remember that every case is different and that this is by no means an exhaustive list, or even my exhaustive list.

My biggest symptoms have to do with pain. I have lots of joint, nerve and muscular pain, as well as widespread feelings of “everything hurts.” I have peripheral neuropathy in my hands and feet, making it painful to walk far distances or put a lot of pressure on my hands. I have a lot of muscular pain, especially in my back. I get sore very easily from doing very little, even as an athlete. I heal slowly and bruise easily.

My joint pain includes weakened cartilage, resulting in a detached meniscus and surgery at the age of 16 and a torn labrum in my hip by merely sprinting in a straight line at 18. I have a number of micro-tears in other joints, evident on ultrasound, as a result of Bartonella.

I have swollen salivary glands and extreme excessive thirst, especially at night, making it hard to sleep. I get overwhelmed very easily. I have occasional panic attacks. I have trouble controlling my blood sugar. I have a painful face rash from the related MCAS that flares often, and heart rate spikes and dizziness from the related POTS.

I have severe chronic migraines stemming from my first concussion, and a constant headache. Because I have been in chronic pain for so long now (5+ years), my body often resorts to nausea to cope. While I have a high pain tolerance, I am very sensitive to additional pain. The inflammation in my body is palpable.

It was only when I saw a LLMD that all of the pieces started to come together and my long list of symptoms began to sort itself out into a shape that makes a little more sense every day.

My Plan Moving Forward

Before my diagnosis, I was doing NAD IV therapy. While there are a myriad of benefits to this treatment, I am too early in my recovery at this point and it ended up being more harm than good for me at this time.

I am currently on a number of herbal supplements and antibiotics together in a treatment plan that seems to be working well for me right now. My energy has improved enough to leave the house sometimes (yay!). I am prioritizing sleep and self-care while I allow my body to heal. I am not currently in school, but the hope is that I will be well enough to attend college in the Fall.

I hope that this general overview of Bartonella can be helpful for someone out there. I am a science nerd that loves to know how things work, and I have found it very difficult to find good information on these types of complex chronic illnesses. As I learn more, I will put together a list of resources I find have the most up-to-date, accurate information about Bartonella and other tick-borne illnesses. Let me know if you have any good resources to add to my list!

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?”

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.

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 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

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.