You can catch up here, if you need to.
Thank you letters and tokens of gratitude
are sailing through the postal service with more to come. I am giving each letter the time and attention it deserves. I am very well organized. Thank you for your patience.
written in gratitude for Aimee and Sharon
Five months into treatment, I develop a fever. It comes and goes; some nights I'll wake up burning and drenched in sweat and by the morning I'll be perfectly fine. Other times I'll be walking through a field, running my hand against the tops of the tall grass and it strikes me, the air becomes suddenly thick, the earth beneath me tilts.
One particularly humid night it finds me on the dance floor of an outdoor wedding, spinning and energized. I push through the crowd, wobble past the cake table and the DJ and the long, long path through a meadow until I'm safely in my car with the motor on (guiltily) breathing refrigerated air as I slip backwards into the glossy back alleys of my consciousness.
My doctor tells me that this is as encouraging a sign as I could hope for at this point in my treatment. A relapsing remitting fever and flu-like symptoms (essentially, the flu) could be a herxeimer reaction from the Babesia, a protozoan that infects my red blood cells and steals my oxygen from the inside. This would mean that we have defeated enough of the Borrelia (the lyme causing agent) for this particular co-infection to finally emerge from hiding, and we are successfully destroying it.
I love my fevers. They make me feel powerful, mystical even, like I exist between this world and the dreamy, filmy world that I slip into when they hit. I have been infected with Lyme for ten years, tortured by Lyme for one full year, and this is the first sign that my body has noticed something is wrong, that it's starting fighting back.
The six week on-agan-off-again flu steals my appetite. I've lost twenty pounds since I was diagnosed and now I lose a few more. I am prescribed Marinol to increase my appetite. I never dreamed there would be a day in my so far ravenous life that I would have to swallow a tiny little ball so that I'd want to eat. David starts making me these blended monstrosities and sitting across from me as I sip them, his arms crossed, foot tapping against the linoleum.
I feel more powerful every day. It doesn't matter that I'm not hungry and that sometimes it feels very much like I am drowning on dry land, and I can say that for certain because I nearly drowned once. I become out of breath with this intense pressure in my face and I cannot speak more than two words at a time. It's a particularly venomous Babesia symptom known as Air Hunger. Nevertheless, something has switched inside of me, something only I can detect. It may not be visible to the outside world yet but inside my own dreamy fever world, I can feel it. I am no longer defeated by Lyme. I'm winning. The symptoms come and go and I observe them, but I am not attached to them. I don't cower in fear the way I used to.
One afternoon, at a bakery in Vermont with my mom and my uncle, I'm trying to tell a story about something that happened to me in Burlington the day before. I breathe in short gasps, one word per breath, and I'm stabbing my sternum with two fingers, hard- some habit I've picked up that helps me cope with air hunger. My other arm, without me noticing, is flapping against my side, the heal of my hand beating my left leg. (Sometimes, when a limb goes numb or tingling, I find it helps to hit it over as if to prove to myself that it's still there.)
So I'm stabbing myself between the ribs and flapping my arm and trying to tell this story between gasps and I don't even notice any of it anymore. But my uncle is looking at my mother and my mother is looking at me with this expression of horror, and then she reaches out and holds onto the arm that is beating my leg and she says, "Let's not do that here, honey."
I freeze. "Sorry." I say.
"Why don't we go home now," she says gently, standing up and gathering her belongings.
this is mom
My doctor tells me to buy a pulse oximeter to wear on my finger when the drowning begins. "Try to stay above 95%, ok?" She writes.
"What do I do if it goes below that?"
"ER."
I keep the device in my glove compartment. Sometimes I wear it at night, mostly out of curiosity. I watch the numbers flicker up and down. I smile to myself. It's a game to me now, the killing. Lyme hates oxygen so I take huge deep breaths, watching the monitor. I fall asleep inventing a video game in my head: Borrelia Hunter. The Spirochete Slasher. See how many ways you can kill it without killing yourself in the process.
Still, despite all of this, David and I have a remarkably normal trip back to Vermont. We swim every single day, driving up and down the spine of the Green Mountains in search of swimming holes. The cold water acts as a full-body anti inflammatory; it slows my heart-rate, reduces the vice grip on my chest and resets my breathing. We dive into waterfalls, disappear into potholes beneath the current and swim through storms of hard, warm rain. On our one year anniversary, we take a boat ride on Lake Champlain. "To a wonderful year," we toast. "Actually a fucking terrible year." And then we both break down laughing.
It's done now. That first year is behind us. Finally, we can refer to it as in the past.
The passing of time means nothing to an invasive, hole-drilling bacteria, but it means something to us.
Is it over?
Can we breathe now?
Our trips become longer and longer as I get stronger. We drive with the windows down and stop along the way to buy sandwiches and iced coffee. I travel with instant ice packs that will pop open with a squeeze just in case I need them. It's no bother at all. Two days pass in which I take no prescription pain medicine, then three.
My aunt and uncle up the road have a small cedar sauna built into the corner of their basement, and every evening David and I sit and swelter until we can't take it any more, and then we run down the road and plunge into the pond. We swim after dinner and before bed. I lie on my bed in the afternoon and listen to my mother playing piano in the living room, my uncle playing the oboe upstairs.
One day, I feel so confident that I leave the house for an overnight, my first in a very long time. I meet up with my friend Elissa in Burlington, and we walk all over town and down along the waterfront. We talk about the apocalypse and our old friend who fell off the Quechee Gorge and lived. "I'm not sure if he fell," she explains, "or if he sort of bounced."
More than anyone else in my life, Liss is able to help me transform the trauma of this past year into something that feels powerfully human. She listens when I tell her about grief and pain and everything this year has taken from us and instead of sympathy I detect a sense of admiration. Like she's proud of me. She watches these pieces of me fall out, instinctual and vulnerable and messy, and then it's as if she reaches out and lifts them away from me, crushing them inside of her fist and the opening her hand to reveal a palmful of diamonds.
We eat dinner out, watch River Whyless play at Common Grounds. She teaches me how to make an infusion of daisies and red clover. I sleep on her couch beneath a weighted blanket she's sewn herself - "don't ever try and sew one of these, they'll make you want to kill yourself" - and I wake up at 6:30 am to her toddler running in circles through the living room. She makes me a bracelet of Baltic Amber to help with the pain, and every day there is less of it.
I felt so normal after that trip to Burlington. And normal doesn't mean normal anymore, it's something way better.
Imagine every time you walk you feel like you're floating. Every time you're able to run an errand it feels too good to be true. You spend a night away from the safety of your own home and you feel as proud of yourself as if you had summited Everest.
That's what I've been doing. Getting stronger and stronger and higher and higher until some days I'm floating on the ceiling, all by myself, just enjoying the very fact that I am still alive.
