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  • Suzanne Casamento

I'm Writing a Memoir About Healing Chronic Lyme Disease

I recently attended an amazing writing retreat and residency in Greece offered by fabulous authors and magical humans, Kate Emmerson and Sarah Bullen. About 20 brilliant writers traveled to Greece from South Africa, England, Australia, Syria, and the Netherlands to work on their memoirs.

A group of writers sitting at a beachfront restaurant with a thatched roof as the sun begins to set over the Aegean Sea.
Some of the fabulous writers at work.

I went to the retreat and residency thinking I would restructure my latest novel, ALL THE MOMENTS IN BETWEEN, but three days in, I realized I'm supposed to write a memoir about surviving chronic Lyme disease. Maybe it was hearing scenes from the other writers' memoirs. Maybe it was getting past that bitchy voice that says, "Who's gonna want to read about your life?" But something clicked and the story started to flow. Here's the first scene I wrote.


 


Massachusetts September 2013


Beep. Beep. Beep.


My heart monitor pulses against muffled nurses’ voices beyond the curtain surrounding my emergency room bed. My boyfriend, Nate, sits in a green vinyl chair next to me, eyelids closed, chin to chest. It’s 4:00 am. He has to be at work in two hours.


Margaret, my nurse, swipes the curtain back. She has short, brown curly hair and wears scrubs covered in Peanuts characters. Margaret inspects the second IV bag I’ve ingested since I arrived earlier that evening. It’s about two thirds empty.


“All right, sweetheart,” she says in a deep Massachusetts accent which sounds more like sweet-hod.


Nate’s head pops up.


“We’re gonna have to admit you. This kidney infection is raging. You’ll need another bag or two of antibiotics once we get you to your room. I’ll be right back with your paperwork.” She smiles encouragingly and disappears behind the curtain.

Nate’s red eyes meet mine.


“Will you please walk me to the bathroom?”


He stands as I sit up and drag my legs over the side of the bed. My teeth chatter so much that I have to concentrate to keep my mouth closed.


Nate wraps an arm around me and grabs the IV pole with his free hand. We walk past the curtain, into the hallway, in silence. A phone rings. There’s more beeping. Nurses buzz around us. I wish I could make us invisible.

Nate opens the ladies’ room door. I lurch forward, almost missing the toilet, spewing vomit all over the seat.


He slides the IV pole into the bathroom. I hear the door click shut behind me.


I’d been vomiting for two days, huddled under blankets, freezing on Nate’s bathroom floor. How could there be anything left? I had lain there praying it was a flu, something that would go away on its own – anything that would not require paying for a doctor’s visit. But earlier that night, when I’d felt myself floating in and out of consciousness, I finally gave in to Nate and let him take me to the hospital.


When my insides are finally empty and I can stand, I open the door. Nate is there. His big brown eyes are sad and worried. He walks me back to bed and tucks the blanket around me. I’m still shivering, wondering why hospital blankets are always so thin.

Seconds later, Margaret pulls back the curtain, pokes her head in, and smiles at me.


“Ready to go to your room?” she asks.


“I have to leave,” I say.


“You can’t leave. You need more IV antibiotics.” Her penciled-in eyebrows shoot up. Her hands cinch her hips.


I bet she’s a mom. If I were her kid, I’d know I was in trouble.


“I don’t have insurance,” I whisper.


Her eyebrows drop. Her stern expression fades into something like pity. Margaret steps into the makeshift room and lets the curtain fall behind her. She leans in close and speaks softly.

“I’m going to prepare your release forms and timestamp them now so you don’t get charged for staying overnight. But you have to stay here and finish this IV bag. As soon as you’re done, I’ll take out the needle and you two will sneak out of here and fill the prescription I give you. But you have to finish this bag, ok?”


She pauses, puts a hand on my shoulder, and looks into my eyes.


“This is serious. You could die.”


It is not the first time someone told me I could die. And although I didn’t know it then, it would not be the last.


 


When I read that scene aloud at the writing retreat, the international writers were appalled. They said:


"You left the hospital because you couldn't afford to get the care you needed?"


"The US is one of the richest countries in the world. Why don't they take care of their citizens?" "You have to write this book. The world needs to know this stuff happens."

It was a great reminder that to the rest of the world, going into massive medical debt for healthcare is NOT normal. That in other countries, people don't have to launch a gofundme the minute a family member is diagnosed with a disease.

I realized that the memoir needs to not only be about my experiences navigating a commonly denied "mystery illness" like chronic Lyme disease, but it also needs to be about the US healthcare system and the $65,000 of medical debt I incurred (and that is beyond what my family graciously helped with, which was probably close to $50,000).

I am well aware that if I had not had the financial and emotional support of family and friends, at this point, I'd likely be dead, bankrupt, or both. Which of course makes me wonder, what happens to the people who don't have family and friends with compassion and/or resources? Being sick is horrible enough, but when you add the trauma of being terrified of going bankrupt, it is incredibly difficult to heal. So, I'm going to write a memoir. The question is, based on the scene above, would you read more?



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