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Lyme Disease Almost Killed Me

A few years ago, I wrote thirty-eight goodbye letters. Some of them were to life-long friends, others to people I had met only in passing. All had left a lasting impact. Keeping the letters short, I only said what mattered; I needed to let them know how much I valued them.

In writing these, I took a look at value—my value—and realized I had it all wrong.

I thought of value as an end goal, a standing ovation from an invisible panel of judges I’d been trying to impress. The means were appearance and stature; insecurity was at its root; and social media was where I put it on display. How I looked, what I wore, who I knew, and my bullet point list of accomplishments were my metrics. Though I had always vouched to not care what others thought of me, that was an assertion that covered up a lie.

I wish I’d recognized this misconception sooner.

Back then, I had all the trappings of a fairly happy life. I had good friends, a career in music, and enough energy to keep me up until five in the morning making art and planning out the next five years. Luck was an everyday norm.

   A sudden jolt of electricity coursed through my brain. My eyes filled with stars. That night, I slept on the couch in my parent’s room. I tossed and turned until morning, my heart racing as the stars became the universe.

One day, I began to feel a bit ill. I thought a flu was coming on. After working sixty-hour weeks, it made sense that I’d feel run down. I stayed home, and my coworkers told me to take it easy.

My boyfriend and I were apartment hunting and I’d been staying at my parent’s house in the interim. Around midnight, at home in my bed, a sudden jolt of electricity coursed through my brain. My eyes filled with stars. My heartbeat sped up. My breath was short. My vision went blurry.

I fumbled towards my parent’s bedroom and called out for my dad.

“What’s going on, honey?”

“Something’s wrong,” I said, leaning my weight against the doorframe. “I don’t feel right.”

He got out of bed and took me downstairs. In the kitchen he pulled out salt and potassium tablets and filled up a glass of water, explaining that the heat of summer had probably depleted me of minerals. Still seeing stars, I swallowed everything he placed in front of me.

That night, I slept on the couch in my parent’s room. I tossed and turned until morning, my heart racing as the stars became the universe.

On the car ride to the doctor’s office the next morning, I didn’t speak much. My mind was full of the fear of what could be wrong, but my thoughts reflected a newfound simplicity: I was either going to survive or I wasn’t.

The doctor examined me and concluded that it was a virus. She sent me away to sleep it off.

   My mind was full of the fear of what could be wrong, but my thoughts reflected a newfound simplicity: I was either going to survive or I wasn’t.

I rested for two weeks and nothing changed. The existing symptoms grew worse and I tallied the new ones in a notebook.

“The dizziness has turned into constant vertigo.”

“The fear is now tremors through my limbs.”

“I’ve lost fifteen pounds without changing my diet.”

“I’m forgetting words and have a hard time completing sentences.”

“My heart continually races like a fourteen-year-old in love.”

I went back to the same doctor. She checked for cancer. Negative. Parkinson’s Disease. Negative. She did an ultrasound of my organs and checked my thyroid. Nothing.

She suggested I see a nutritionist. I went. I told him all of my symptoms; he tried to sell me products with his name on them. I cried in the elevator.

For the next few months I lay in bed and consulted with nine different doctors. They examined every inch of my body and found nothing. New symptoms appeared as fast as cars at rush hour.

I went to the emergency room five different times.

Inside, I waged a silent war. If I got too angry, I’d be institutionalized; one doctor had threatened, twice, to send me to a psych ward during one of my ER visits. But, if I was too calm, no one would take me seriously. If I wanted help, I had to develop a new personality.

So I wrote a new character: I was an innocent bystander held captive by my body that was, in turn, possessed by a mysterious force. I had to separate myself from my symptoms and prove I was of sound mind.

But I couldn’t convince the doctors of my undiagnosable pain. Their diagnosis was consistent across the board: I was having a nervous breakdown.

They prescribed Valium for panic attacks, suggested treatment facilities for the weight loss they could only understand as an eating disorder, and suggested uppers for depression.

It was all in my head.

For stretches of time I did not move or shower for days. When I finally found the strength, getting out of bed and walking to the bathroom took longer than it would have to order and drink a cup of coffee. Confronted by the mirror, I’d scan the new rashes along my chest and forehead. When I undressed, I had to stop over and over again, beset by waves of vertigo. Once I was naked, I looked back in the mirror and counted every rib. Ten more pounds lost. I was looking at myself but I felt like an outsider five feet away, watching myself dissolve.

I saw some friends. There were a select few who stuck around and brought light to my life. Some I only saw once; apparently, my unexplained condition was unappealing. The rest of them wrote off my absence as part of a creative phase; to them, I wasn’t dying, I was just being a hermetic artist.

   I realized this wasn’t just an illness, it was a metamorphosis. In the beginning, I thought getting better would mean going back to being the person I was before I was sick. This would never happen.

My boyfriend remained busy with his own life. He was disappointed with me. By me. “I don’t know what happened to the person I fell in love with,” he said when I dropped my end of a new desk we were loading into our apartment.

I wasn’t sure what I had done to deserve this. My lack of God didn’t help. I believed that we wrote our own lives, but this twist was unexpected. I didn’t remember plotting this course.

Once, in a hallucinatory state of panic, I saw a dark, blurred mass in the corner of my room. I asked it why it was here. It told me it was Death.

That’s when I wrote them: thirty-eight letters to the most impactful people in my life. In finishing the final one, I stopped to re-read what I had written:

“You were always such a positive presence in my life, whether you were physically there or not.”

I took a second to reflect. It hit me all at once.

A positive presence. When I walked away from these people, I wished I didn’t have to. I felt strong with them; I felt better. I was empowered by their existence alone.

Here’s who didn’t make me feel like that: My doctors, who discouraged me and told me I was crazy. My boyfriend, who had dug into my psyche and planted shame, convincing me that I should be sorry for my illness. The people who had turned their heads from me because the reality was too difficult to bear.

But those friends, the few that had stuck around, made me feel loved and cared for. My parents were the most supportive people I knew.

I stopped going to the ER. I stopped calling the doctors. I shunned those who did not support or believe in me.

I broke up with my boyfriend. He begged me to stay, punching himself in the chest as he apologized for his inability to empathize. I accepted his apology but not his presence in my life.

   I soldiered through each symptom until it was gone. It took 18 months to fully recover. My heart slowed down. My limbs stopped shaking. My body gained weight and, finally, I felt like I was in control.

I turned to the Internet. I searched every physical symptom of a nervous breakdown. Mentally, I knew I was sound, but if this was my “diagnosis” I was going to treat it with a side of rebellion. I printed out diets. I purchased every supplement and herb. I wrote down a routine I would follow, and I did. I soldiered through each symptom until it was gone. It took eighteen months to fully recover. My heart slowed down. My limbs stopped shaking. My body gained weight and, finally, I felt like I was in control.

I had come to realize this wasn’t just an illness, it was a metamorphosis. In the beginning, I thought getting better would mean going back to being the person I was before I was sick. This would never happen. There was no going back. I could only grow into who I was becoming.

Almost a year after my recovery I found out that, unbeknownst to me and everyone else, I had beaten Lyme disease.

It’s hard to swallow that where I thought I would be died during those years. I had been healthy and seemingly invincible, with the goals and expectations of a vibrant woman in her early twenties, and I had been working hard to attain them. But all that changed because a tick bit my hip. Instead of checking off achievements on my Life List, I’d learned what death felt like. I like to think that this insect chose me. I needed this awakening.

Value is measured in how much we can help another. It is our ability to love unconditionally. It’s in what we make and ultimately what that creation does for other people. It’s not giving into pretenses. It’s being a positive presence, the warm feeling we leave someone with when we walk away. It does not live in the pockets of our overpriced jeans or the apparent happiness we project. There’s no ovation.

   Value is our ability to love unconditionally. It’s in what we make and what that creation does for other people.

I approach my relationships differently now. It’s trite but true: Before I could be a true friend to anyone else I had to truly befriend myself. Now, knowing that, I can empathize and rejoice alongside friends and partners without losing any of my own strength and integrity. I used to think value was an invisible pedestal, but now I just think of the ways in which we can lift each other up. When someone walks away from me, do they feel empowered? More importantly, do I?

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    Alex Wisner
    About the author

    Alex is the writer of “Other Halves: a collection of short stories” and Founder of the music & writing pop-up called Treehouse. She lives between Los Angeles and Paris and will pretty much only leave her house if Mexican food is involved.

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