A Brain On Fire: Losing Everything to an Invisible Illness & Working My Damned Hardest to Get it All Back

From seemingly insurmountable loss, to gains brought to light through bravery and determination; simply by showing up to this life of ours, we are not just living, but thriving amidst the chaos, pain, and uncertainty of it all

This my friends, is Elli...

I see glimpses of her as I wind my way through wooded roads, scattered with branches, or rather, natures debris. I see glimpses of her as I lean against the nearby boulder to steady myself against the weight of elevation and a hike I didn't necessarily prepare myself for, but I continued on regardless as I felt Elli's gentle push of encouragement as she, despite the push back, always manages to find a way to keep herself moving forward, and with that, so shall I. 

And there she is, running between the fallen trees, through the debris, chaos, and uncertainty, and onto carry the weight, the thrill, the undeniable energy and life that she gains from every adventure.

Her feet are steadfast after years of uneven ground. Her mind determined and curious through the continuous fight of loss, of gains, and even more loss; no matter what this life throws at her, Elli picks herself back up and leans in close to the things, people, love, and support that you can always find right by her side, even when the absence weighs heavy. And when the dark clouds once again roll in as the air cools, sending chills throughout, and the path home is no longer clear, there she stands, ready to represent all that it means to be more than... 

All that it means to live a wild life of joy, adventure, love, fearlessness, connection, and curiosity; the loss that we feel never leaves us, but rather, teaches us to hold onto moments past, continue to pull hope from them, and use their light as every reason to keep moving toward happiness when the darkness creeps in.  

This is her story...


Introduction

In this exhilarating, humbling and terrifying moment - all the thoughts and words that have been burning a hole in my soul, begging to be shared - will be.

And in all honesty, when faced with the daunting task of putting to pen and paper what the past 15 years of my life have been like, I've been overwhelmed. But after weeks of coddling these ideas and memories, I'm ready.

My greatest fear, was and is not doing justice to a story that has shaped my entire self. But I'm going to try, try and convey that what you see now is not without tragedy. And the persona I embody on social media is really the product of many years of struggle, losing everything to an invisible illness and working my damned hardest to get it all back.

 

The Start (Me)

My health journey has led me down a rabbit hole so cavernous I can hardly remember all of what got me here. This has been everything thus far, because most every memory is overshadowed by it, at least on some level. For the longest time, it had become so deeply embedded in how I saw myself that it manifested in a lot of self-hate. It's taken me a long time to disassociate the two - and understand that I am not an anxious or sad person by nature and my symptoms are not a representation of my soul.

I've known crippling, panic-ridden anxiety, unwavering depression, debilitating chronic fatigue, obsessive tendencies and at times, suicidal thoughts because I couldn't bear any of it. Later on, there would be a brief but intense period of hallucinations, nightmares, panic attacks and what I think was manic depression and a loss of touch with reality. Not trying to scare you, but in actuality, a brain on-fucking-fire.

My symptoms were always inexplicable and largely not seen by others, or misunderstood as extreme social introversion, antisocial behavior, or laziness. Essentially, a conscious choice I was making in regards to distancing myself at one point or another from everyone I've ever known. This is partially true, albeit, most no one ever knew why.

I've always struggled with self-love, and could never truly accept myself in what felt like a body and mind constantly on the fritz. I shied away from intimacy and community because of a fear of coming into it as half of myself. Half of who I should have been. I had trouble fully engaging with my life, or anyone in it. My health felt like a dark secret, that was too terrifying to share for fear of being misunderstood, doubted or judged.

Anxiety and depression made for a life afraid, a constancy of second-guessing, ever-doubting and endless comparisons. I always knew something was wrong, but I'm at peace with what felt like hypochondriac tendencies, because I was right.

Unbeknown to me until about 3 years ago, I was suffering from lyme disease, mold toxicity (HLA-DRBQ gene), an MTHFR mutation, pyroluria, candida overgrowth, bartonella, copper toxicity and copper deficiency (fascinating, isn't it? yay science). I should note that while the lyme came from a tiny asshole of a creature - most everything else was genetic and many passed to me by my dad.

And it was his story that really shaped mine.

The Start (Him)

This is the hardest part. I've rewritten it a hundred times in my head. I'm keeping it brief, because I don't know if I'm ready to share it in it's entirety. “Time heals all wounds” just means you’ll develop a new normal. You won’t think about it as much. The pain morphs into a numbness. In reality, you’ve just adjusted, but when you stop to remember what you lost - all the hurt comes back so fast and so intense you wonder how you ever managed to turn it off. I don’t think this will ever go away, and honestly, I’m not sure I want it to.

What started as chronic fatigue and difficulty with balance - spiraled into a complete degeneration of mind, body and soul over the course of 6 years. It happened fast, but felt like a lifetime. His speech became slow, his eyes became sad and his spirit was nearly broken.

Doctor after doctor raised their hands in ignorant unison as they told us they were sorry, but they had no idea what was happening to him.

Questions went unanswered, and then were answered wrong. They said it was ALS. In truth, they didn't know what to look for, they didn't know what tests to run, and they ignored our research. What I didn't understand then was the politics and polarization of this disease, the intentional disregard. I have never felt so abandoned.

When we found the right doctor -  it was already too late. And after 6 months of intensive and terrifying treatment, with me as his caretaker, it was over in an instant. He just wasn't strong enough.

I saw the signs of what was to come, I pleaded with him to keep fighting, and I saw it in his eyes when he knew it was over.

And then I did too.

Lyme disease stole my dad from me.

He was 56, and I was 24.

From there, everything got a whole lot worse.

How Bad It Got

It's a real trip to find yourself sitting on the bathroom floor at 2am wondering if you're insane. They say crazy people don't know they're crazy, but I knew. You could say I was borderline manic, and I was fucking terrified. The knee-hugging, head-tucked, fetal position was one that I knew all too well. And let me tell you, when emotional and physical pain forces you into positions like that - you know it's all pretty fucked.

I was hallucinating, experiencing suicidal thoughts, forever in frenzied tears (over everything and nothing) and filled with incomprehensible rage. All at once, everything hurt and everything was numb. I had nightmares that would wake me from a dead sleep and leave me covered in cold sweat. And the anxiety, it was actually an incessant state of panic. Panic over just existing. How do you explain that to people? I'm not sure you can, unless they've felt it.

So many factors led to me being the sickest I've ever been, but the most driving - was having my heart shredded into a million pieces as I grieved the loss of the man I loved more than anyone and the life I was losing. My relationship was suffering as a result of my inability to function, and my friends felt further and further away as I turned in on myself.

Desperate, broken, and exasperated, I needed to act.

How I Healed

First, my boyfriend and I made a mutual decision to end our relationship. I moved out of our apartment, quit nursing school and went home to find peace.

Returning to the basics, and with mom’s help  - I focused on a pure diet that wouldn't feed the tiny monsters riddling my body and poisoning my blood, set a tedious and strict self-care schedule, and lived slowly, deeply and intentionally.

Like anyone coming back from the brink, I needed structure and purpose.

There were also countless blood tests, hours on hours of research, many non-conventional treatments and throughout, a mother advocating for me like no doctor ever could. We’ve always focused strongly on naturopathic and holistic remedies and they have worked very well for me. You might even call us witch doctors (and proud of it).

For my heart, I made a habit of setting up weekly coffee dates with my oldest friend. I took in foster puppies and bottle-fed lambs at a local farm. I dabbled in gardening (only good at growing tomatoes) and watched Gilmore Girls all the way through (repeatedly).

I took all the time I needed to work through my feelings, reflect, and listen to my body. And with the research (and boundless guinea-pig testing), I found answers.

I remember the exact moment when I felt a change. I was crying, over what I can't remember, but I became hyper-aware that my tears were actually a very normal/rational emotional response to the pain I was feeling. That might sound like common sense to you, but this was comforting, after months of being a shell of a person with little control over her emotions, and often no insight as to why she was feeling and acting so irrationally.

On 5/20/15, I wrote this:

"Huge, huge change.
Clear headed, sharp.
Bright eyes
I’m the chillest I’ve ever been.
I feel everything. Intense love, sadness and I appreciate everything I’m feeling. Because I’m feeling SOMETHING and it’s REAL."

Like a winter turned to spring, I came alive. The fog lifted, my vision cleared and my soul felt like it was igniting for the first time. Everything felt different, and I was finally understanding what it meant to truly feel peace.

What Pushes Me Forward

I have bad days. They’re still terrifying. Three months ago, I quit my job, subletted my apartment and moved home to Connecticut for 8 weeks because I was drowning, again. I kept it very private, I was heartbroken and discouraged.

At the time, I wrote this:

"I left my shelter and ventured out into the world to see what I was capable of and what I’ve learned is that with any bit of pressure I start to break. I’m frustrated. This is hard. I feel defeated and lost and it hurts. I’ve spent the past two and a half years desperately trying to heal, regain my strength and vanquish the demons in my head. I made so much progress - and now, just 3 months into willfully moving across the country - I’m taking steps backwards so quickly that I barely have the balance left to stay standing."

But I didn't come this far to only come this far. And I have a lot of lost time to make up for. By hell or high water, I am going to be the wild and wonderful soul I was meant to be, fearless and bold. I refuse to be burdened by weights that instead of holding me down, could be pulling me forward. Driving forces that should push me beyond what I've known and towards all I've yet to do. Where I am meant to go.

And so, once again, I find myself out west pursuing the life I've dreamt for myself. I'm taking risks, they're paying off - and I'm throwing myself heart first into all of the things that terrified me as I scramble to escape an ever-growing comfort zone.

I see all the tough moments as lessons to be learned. What is my body trying to tell me, what am I doing wrong?  And each time I find the answer and correct course, it adds that much more to my resilience and confidence in my ability to overcome. Because you know what? It's okay to take a beat, because failure teaches us that we don't know everything, but with every misstep, we're growing and next time we'll know what to do.

As for my dad, losing him was without question the deepest and darkest pain I've ever known. I thought it would either kill me, or my heart would never feel full again. But from all of that, I've seen in myself a strength I never could have imagined. A strength in acknowledging my pain and choosing to live beyond it.

Chloe (@morethanlyme) said it best when she wrote a while back that,

"we have the ability to carry with us the voices of the people that have long past. We have the ability to take all that they have taught us, and pay it forward to a world that so desperately needs our love."

And in doing that, I honor him. And that brings me so much peace.

Where I Am Now

Now, the frequency of blissful moments is a normalcy I never could have imagined. I'm healing. And I am remaining true to myself as I continue to live a life alive.

With the calm comes so much reflection. And memories of my whole world crashing down around me are met by the stark comparison of then vs. now, and how far I've come. Emotionally, mentally and physically - I think this is what thriving is.

I’m proud of the steps I’ve taken to leave the pain behind. I moved across the country. I left everyone and everything to start completely fresh. To get to know myself in a situation void of any influences and learn what drives me.

I'm unplugging and immersing myself in nature because the raw simplicity of it, and humbleness that comes from being amidst it's beauty, inspires me again and again.

I'm chasing the moments that make my heart pound and my eyes water, I'm passionately loving the people who support me and I'm present enough in my own life to see the beauty in absolutely everything.

I can feel the pressure lessening, and more than anything - I'm so thankful, on most days, to have peace. Anxiety is an unrelenting weight. It settles in and expands, filling your entire consciousness. No other emotion can be truly felt in it's entirety. And free of it, I almost cannot comprehend the magnitude of all of the things I am able to feel.

Even as I write this, I can't help but smile. Because I am so much more.

You

Thank you so much for taking the time to read my story. I feed off of the love and support from this community. It was a connection I never knew just how badly I always needed. But sometimes you don't have to know what you're looking for in order to find what you're looking for.

We are here not only to learn from one another’s stories, but to build each other up when we feel small and our hearts are broken. And so, to all, on your darkest days - remember that it will get better. We are not defined by this, and we are not meant for this, I promise you.


You should all most definitely follow Elli along on her adventures by heading to her Instagram (@elliexplores)! And did I mention that she is not only an incredible writer, but also takes AH-may-zing photos. You can find them by clicking her Instagram link above^

Photos By: Ellie + her good friend, @kelton.gregory

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