chronic illness – 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.

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!

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.”

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."

“It 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.