Thursday, July 21, 2016

consummate actress on a morphine drip

(Start here if you need to catch up on the Lyme Disease Fun House.)
This post is written in gratitude to Jona from the boat, whose kindness is epic. And to Third Eye Blind.
What a tight rope walk it has been.

Inside a cafe in Decatur, Georgia, David and I find ourselves across a table from his brother, Jeffery, and our sister-in-law, Ariyele. No stranger to our odd little planet, Ariyele has been fighting chronic and autoimmune disease, chronic lyme included, for the past ten years. Jeffery by her side. When they ask how we're doing, they know the magnitude of such a seemingly simple inquiry.

Outside in the square, the day is scorchingly hot, the sun so bright that I can barely think beyond its brilliance. The cafe is a cool refuge, although I cannot resist ordering an almond croissant with my peach blossom tea iced tea. David gives me a quizzical look, opens his mouth to say something, and then stops.

I try and explain to Jeffery and Ariyele, who already understand, what a mixed bag it's been; all the ways that this past year of sickness has made us stronger, more empathetic. What a teacher it's been and how it unveiled what it is I want to do with my life, which is ( in its boiled down form) to learn everything about Lyme and then help everyone who has been infected. Abruptly, David excuses himself to use the bathroom.

Later on, driving North through the shimmer of heat that hangs over the green stripes of South Carolina Farmland, David says to me, "Lyme is pure evil. There is nothing good about it. Nothing."

You are right, my darling.

And so am I.

We lose each other almost daily.

To survive the daily sacrifices, limitations and sadness of living with someone who has been infected with Chronic Lyme, to say nothing of the financial burden and the stress of stretching one income to cover the cost of three: the two of you and the illness, which is always hungry, always demanding, never cheap, with unending reservoirs of patience, empathy and resolve would be possible only for a saint. Last time I checked saints are not real, they exist only in storybooks and statues.

To survive the daily indignities, dissolving identity and ever-changing blueprint of Lyme's greedy and ubiquitously painful claims on your brain, spirit, hemoglobin, heart, eyeballs, throat, stomach, voice, sense of balance and well being and the skin of fear and confusion that encompasses everything like an eggshell without becoming, on occasion, a maddening, wheedling, whining, angry, incoherent bore, a complete drain on resources in every sense of the word, would only be feasible for a saint, or a mannequin or a consummate actress on a morphine drip.

And would you believe it, nobody will give me morphine.

We slid off Compression Falls the other day in Tennessee. It was smooth ten foot rock slide over the lip into a twenty foot free fall, with just enough time to bicycle your feet like the coyote that moment he looks down and realizes the earth has vanished beneath him, and then you hit the aerated pool at the bottom in a remarkably soft landing. Then we spent the afternoon diving as deep as we could go and swimming along the river bottom, in a world that is decadently cold, dark and silent.

Our friend Charles has a farm not far from the waterfall and that's where camped out for the night. When we find each other again, it's usually in places like this, a couple of hours away from the house and its buckets of medicines, stacks of books by Buhner, Cowden, Horowitz, all of the bedding stained with bright patches of yellow from a Chinese tea that I soak in rags and lay across my eyes, the constant reminders.

On such evenings I like to sit beside the campfire in between David's legs and pull his arms around me as tight as possible. I call him my Hug Contraption. We watch rainclouds gather and break open over Roan mountain in the distance, and later, he'll wake me up to see heat lightning quietly brighten the sky with flashes of violet.

Very slowly, so slowly I'm not even sure if David is entirely aware, our outings are getting longer, becoming more involved. The other day we went for a mountain bike ride. Then an evening paddle boarding trip- in the same day. (Unfortunately the dog fell in, and consequently contracted pink eye.)  I survived three hours of Atlanta traffic behind the wheel without batting an eye, how many people can say that? Instead of going straight home after a night of camping last week, I lasted well into the next afternoon by falling asleep in a hammock. That may not sound like much but it is much. 

Sometimes I measure my progress in the amount of baths taken. This past spring essentially amounted to a three month long soak. Talk about pruning. Lately I find myself going for days without resorting to the tub. Victory!

I still need to sleep a lot. I vomit more than would be considered desirable, that's really the only way to put it. My eyeballs pulse with a stubborn pain that will not seem to leave me alone despite direct order and gentle coaxing and Tramadol.

I breathe very hard these days, as if I've just run a mile (ha! as if!) my chest feels as if its caving in and my heart thinks it's an animal that needs to pound its way out of my rib cage, but as we have come to learn, just like the fevers which still glide me every now and then into a filmy and secret world, these things too are to be celebrated. All of the Mepron, Omnicef, Minocycline, Septra, Cipro, Wormwood, Enula, Xylitol, Coaratem and Lactofernin from the past twelve weeks of the Lyme Biofilm and Babesia Protocol Part B is peeling off the infections layer by despicable layer and the Babesia infection is finally dying off, and making a big fuss as it goes.

Go on, little protazoa, pitch a fit, enjoy your funeral! You don't scare me anymore.
Life right now is so pretty and so ugly and so pretty and so ugly and so pretty and so ugly.

To help me afford my regiment of effective and unbelievably expensive medications, which are not covered by insurance, click here to learn more.

Friday, July 8, 2016

Relapsing Remitting


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.  

Instagram  : @thewildercoast

Monday, July 4, 2016

Shine Light on Lyme : The Event

just a few of the businesses participating in the raffle and silent auction!  

I am so excited to meet many of you this upcoming Sunday at the Shine Light on Lyme Benefit and Gala!

The festivities will be held on July 10th, from 2-5pm at Urban Orchards Cider House in our fine neighborhood of West Asheville.

Trader Joes is providing free food and Urban Orchards has plenty of delicious, house-made cider on tap as well as plenty of good Carolina beer and a full menu of local bites.

I'll be giving a very brief talk at 3pm just to discuss the purpose of this event : simply put, to connect those who need to be connected. Lyme warriors with other Lyme warriors, healers with those who need healing, friends and families of patients with chronic illness who need support and connection themselves. It is HARD to be a support person, to be an ally, a friend, partner, parent, of someone who is suffering. It takes a saint-like level of selflessness and patience. They need recognition as well, as well as some kick-ass raffle prizes.

I have not had to suffer in silence because of a combination of luck and resourcefulness, and now I want to share both of those things with others. Nobody should have to go through this feeling as if they are alone. We are anything but alone. We just need to find one another- hopefully on Sunday, on the sunny lawn of Urban Orchards with hammocks and drinks and food and prizes.

Everyone is invited to this event! No RSVP needed and there is no charge to attend. The raffle is STACKED! Art, photography, adventure packages, gift certificates to restaurants, breweries, juice bars, raw food cafes, health clubs, acupuncture, barber shops...there will even be a mobile clothing boutique on site!

Sunday will be uplifting, refreshing, helpful, honest, and fun. I cannot wait. And for those blog readers who I know will be attending (you know who you are...).....I am counting down the minutes till I can finally give y'all the hugs you deserve!

Any questions, please let me know. We are still warmly welcoming any additions to the event and the raffle / silent auction, so please let me know if you or your company would like to be involved. I am working with small businesses, artists and makers to help them get some great exposure and marketing as a thank you. A portion of the funds is going directly to the Lyme Light Foundation, which helps young adults and children afford facing Lyme and co-infections afford their treatment.

Together, we can transform this painful, mysterious, and frustrating health crisis into something worthy, something illuminating, lovely, a piece of our lives that brings us together instead of driving us apart, uplifts us instead of crippling us. A huge thank you to all of the local businesses who stand in solidarity with us that Lyme disease needs more recognition, awareness and acknowledgement! SEE YOU SUNDAY!!

Tuesday, June 21, 2016

Treasure

this post is written in gratitude to Linda Sharps, whose bravery inspires me daily

I'm beginning to feel different than everyone. Not lonely, but apart. There has been this aesthetic trend in the past year or so, you see it on social media mostly, to display a life that appears dainty and muted, every tiny detail presented in a manner that is off-handed yet quasi-sacred, rustic but always so very dainty. It seems as if there are whole armies out there of slightly more lackluster Gwenyth Paltrows, faces covered by the oversized brim of a sunhat, eating a tiny meal at a long white table decorated with neatly folded linens, populated by a dozen or so beautiful if slightly wan looking thirty-somethings.

From the looks of it, their sweet and effortless lives involve plucking a single daisy and poking its long, slender stem into a milk-glass bottle, wrapping babies origami-style in swathes of fabric, catching on film a single chip of rainbow light, cast from a twirling prism, as it journeys across a vast white wall, re-wrapping the babies, perhaps a single leek for lunch, or a lilac-tinted endive clutched in a child's small and earnest fist, extended and photographed against the same ocean-wide white wall.

I'm envious. 

I'm envious because I can't even stage that kind of existence, much less live it day in and day out, and it seems so very tempting. Even with its all its irritating qualities, it's faux-humble gentility, it still manages to somehow appeal to me. How pretty and soothing; how far from my grasp. 
join us on Instagram @thewildercoast
Everything in my life right now is so vivid. That's the only way I can think to describe it. I woke up a few nights ago with a bright red eye, a yellowish, blood-tinged tear slowly oozing down the side of my nose. You hardly even notice these things anymore. The cystitis has returned with a vengeance; I sleep with an ice pack between my legs. It's hard to appear dainty when you sleep with an ice pack between your legs.
We drove to Vermont a few days ago, stopping for the night at motel outside of Harrisburg whose blinking neon sign was barely ten yards away from the shoulder of I-81. For the first time in my life, I fell asleep in the bathtub. The next morning as we rolled North the landscape grew brighter and brighter, until by the time we arrived at my parents' house the world appeared as if in technicolor, ebullient and buzzing with insects, croaking with frogs, the sky blue and marbled with traces of thin white clouds. The peonies in the garden were fat explosions of magenta, their stalks bowing under the weight of their incredible feathery heft. The fields surrounded the roads and houses in a haze of tall, citrus-hued grasses.
 David and I spent the first few days in New England constantly seeking out water. Swimming has become an absolute joy, an escape from ubiquitous pain and the only time when my heart doesn't thump against my chest like an angry rabbit. When my vision softens and fades around the edges I look for a body of water in which to dunk my head, open my eyes beneath the surface and enjoy a world that's always blurry and cool.
When I'm fully immersed in fresh, living water, the weightlessness and ecstasy of the experience overcomes me and I'm flooded with intense feelings of coziness and contentment and goodwill. The feeling of pulling myself out of the cold, clear water of the quarry and pressing my body against a slab of sun-warmed granite on my stomach is better than opioids. Swimming is a temporary cure but it is a cure nonetheless.
 We've swam in the clear blue hole beneath the iron bridge in downtown Woodstock, where the perfectly manicured lawns slope down to meet the river, and every now and then a figure will pause on the bridge below us, wave and point a camera. We've floated around Silver lake on two air-filled tires, dipped below the pollen that dusts the surface of the pond like powdered gold, jumped off the shattered shale on the steep banks of the Quechee Gorge into the icy, dark green river.
Maybe on day soon, I will have my slender daisy in the milk-glass, a quality of airy cleanliness that follows me like a soft mist, a life free and clear of the small, perpetual horrors of Lyme disease. 

For now there is the crush of pain against relief, bright and rough, the cold shock of river water that swallows and protects me from the burning day and the treasured moments of joy and calm that blink like fireflies against a black summer sky. My life is filled with mess, filled with uncertainty, full of treasure. 
join us on Instagram @thewildercoast
If you'd like to help me get free of Lyme disease, here is how to help, and here is how I will say thank you.