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. 
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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. 
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Sunday, June 12, 2016

From Lyme to Emerald


I want to give you a glimpse into the financial crush of treating Lyme and its Co-infections (Anaplasmosis, Bartonella, Babesia.) A good writer shows, not tells. 

The figure below shows the cost of the loathed anti-viral Mepron, you know, the one I complain about all the time- the foamy yellow liquid that comes up as often as it goes down.  I go through a 750 ml bottle about every 1.5 months. The bottle costs around $3,000, which means every time I throw up a teaspoon, it costs me around $100. That's some serious incentive to swallow. 


Insurance has paid a good portion of this medication until now. It's arbitrarily decided it is done with the Mepron. Oh, Blue Cross Blue Shield of North Carolina, I wish I was done with it, too. 

I would like everyone who has donated to my medical expenses or shared my blog online (a huge help) to see a concrete example of what Lyme patients are up against, and how you are helping to afford the treatment that is saving my life. Yes, Lyme does kill people. It works its way into the heart and it kills. I have a tendency to be hyperbolic but when I say that you're saving my life, I mean it. And many of you have never met me outside of the internet : I think you are especially astounding. 


Here is something I wanted to share today. My hometown of Woodstock, Vermont, led by an incredible woman named Leanne Velky who went to elementary school with me, has created a raffle (and created that lovely event banner) to help me afford the exorbitant cost of treatment. You can check out the items and buy tickets here. 

The enormous, life-altering swell of gratitude that I feel towards everyone involved: Leanne, Woodstock, Simon Pearce Glass, the massage therapists, the creator of those beautiful sea glass and pearl pendants and everyone who has donated to help me fight this monster of an illness....that is a different post for a different day. Some of it is private and belongs only inside the thank you cards that I am writing out every single day. 

I don't want to be an astronaut on the moon anymore. I want to go home and not feel sick all the time. I want my eyes to clear up and my hands to stop shaking and my pulse to stop bounding and this fever to be gone. I want to wake up and not be scared. I want to give David a break from this because he needs one. I want to be healthy enough to have a baby one day, and not be wracked with fear that she will be born with Borrellia already drilling holes inside of her. 

For now, I am going to swallow my morning's worth of the killing regiment: Mepron, Omnicef, Septra, Enula, Lactofernin, Artimisinin and Xylitol, and keep hoping. 

Friday, June 10, 2016

Fun Friday Flipout #3

Welcome to the third edition of Fun Friday Flipout. This is the time each week where we all just get to relax, enjoy ourselves, and examine the brighter side of things.

Last week wasn't so bright, so we didn't flip out on Friday. But today is a very good day, one of the best I've had in a long while. Let me tell you why.

I was getting my blood drawn this morning for my safety labs when I received an email from a girl here in Asheville who also has chronic Lyme. She said a friend of a friend had told her about me and would I like to get together for a dairy-free, sugar-free, wheat-free, soy-free something or other and talk?

I texted her immediately: "Yes. Now. Immediately."

Half an hour later we were sitting inside the cool brick and copper of Trade and Lore Coffee House, gauzy white wallhangings lifting in the breeze from the ceiling fans, drinking almond milk lattes and talking about everything. We share many of the same symptoms, swallow the same supplements, and even adhere to a similar antibiotic regiment. Besides part time writing and side gigs, we're both too sick to work and we spend every moment of every day trying to find a way out of this.

She is beautiful, capable, funny and optimistic. We both hope to become health coaches one day and help others navigate their way through chronic Lyme, and so we devour books, attend conferences and absorb as much information as we can about this monster that has invaded our organs and stolen our lives. We are both success stories in the making.

As I spoke with her, I felt a little of the terror that still clings to me after this past year melt away. We spoke the same language: anaplasmosis, air hunger, anger, babesia, borrelia meningitis, confusion, costochondritis, doxy, dismissal, eye twitch, fatigue, liver enzymes, optic neuritis, port lines, pulsed ABX, safety labs, uveitis. I felt instantly connected and less crazy.

Together we planned a summer filled with bite-sized excursions: paddleboarding, yoga, lying around, juicing, gardening, podcasts, hikes that are either short and sweet or long and slow, walking the dogs.

We're not sure who connected us, somebody told her friend about my blog and I don't know who it was, but thank you. Whoever you are.

There were other nice things this week, like cotton candy grapes, minted ice cubes, cold glasses of juiced collard greens, my red haired husband yanking ruby red beets from out of our garden, vegan peanut butter ice cream, an old friend who sent me a piece of sanded burl in the mail that is so unearthly beautiful that I cannot stop touching it, our friend Dan playing an acoustic set at the Mothlight and piles of thank you cards all neat inside their white envelopes and ready to go, but what I'll always remember from this week was meeting Whitney.

Imagine you live half your life quietly alone on the moon, sifting through moondust, searching for a way back to earth. You are coping but you're very lonely and you're afraid you might be losing your mind. And then suddenly a spaceship lands and another little astronaut emerges. "I'd like to get back to earth, too," they say. "Let's figure this out together."

Imagine. Just imagine what a difference that would make.

Tuesday, June 7, 2016

Spiral

This one is for Ashley and Dan, in gratitude. Dave and I love you both.
(You can catch up here, if you need to.)

It's a small thing, a scheduling error, but it leaves me crying over the sink, rotating the sponge in circles on the plate like a record player. I am a record player, my chip of diamond catching in the groove and repeating, repeating, repeating.

We do something wrong, my husband and I, we forget about a work obligation and so we have to cancel the weekend plans. It is nothing, nothing out of the ordinary, but just enough to splinter the thin exterior gloss that we skate on every day, and we fall through. For a moment we are suspended in that bleak space below the surface, acutely aware that since we cancelled the weekend plans, it means I will have been almost completely homebound for three weeks. David has done nothing but go to work and come home and I have done nothing but the dishes, the dog's daily walk, the shuffle of pills from orange bottles to plastic squares to my own throat, morning and night, a glass of water. Repeat. Repeat. Repeat.

This below-surface world is darker than the one we have tried our best occupy for the past year, and cloudier. On the surface we are bright and buoyant, we speak of this disease in terms of the lessons we've learned and the gifts we have received, both of which ripple through the landscape like thin veins of sparkling gold yet still this place is one we would both leave behind in an instant, given the chance. We discuss the future as if the cure is not just inevitable but close, out of eyesight but certainly, so close. We have come so far, we have made such progress and that keeps us afloat- doesn't it? Haven't we?

We have come to understand, by now, that things are decidedly more complicated than we thought they would be. We like to tell ourselves that we are moving forward, a slow yet gradual climb but really, time inches forward in a tedious spiral. We move in these slow circles and after completing each rotation we get a little bit further from where we started, yes- progress!- and yet our life is still composed of circles. Over time, the looping makes us feel a little bit insane.

We shuffle our schedule, I hang up the phone, mark the calendar, and then lock the doors to the house. Alone, I return to the sink and start to cry, my voice high and sing-songy. I consider kicking the cabinets but decide against it. The tears dripping down my face feel almost indescribably soothing to my eyes, which are swollen and infected by Bartonella, Cat-Scratch Fever. Tears are probably the best thing for me right now. How funny. Maybe crying is the medicine I need- not in some trapped-bird release metaphor but in terms of chemistry. And these days, I'm much more invested in the chemistry of recovery than in anything less tangible.

I am not in remission. I have a good week but then I catch a virus, just a little virus with a fever and swollen glands, how quaint. But while I wait for it to pass I have to pause my other medication and that is the very last thing I want to do. I do not want to stop this train, I want to run it off of the cliff and be done with it.

While we wait, we baby my liver with Milk Thistle and Glutathione. We're keeping close tabs on my liver with CBCs, but my eyeballs remain stubbornly bloodshot and opaque. What is it, the Bartonella, or the medication that we use to combat the Bartonella? Do we tiptoe backwards, carefully and apologetically or do we keep plunging ahead? That's not a question I'm asking you to answer. I just need you to know the type of thought that consumes me on the days when you don't hear from me. Please try and trust my team of doctors. Please try and understand how tricky this is.

I have spent long hours in the past few months embarrassed that my life has shrunk down to the size of a city block. How paper thin my excursions have become, how witheringly repetitive I must sound. But then I'll drink a cup of coffee and stumble down the road with the dog in a caffeinated haze, perky and taking pictures of clouds, and I'll return home with some five-cent profundity about what a meaningful thing it is to live so close to home. 'I look deeper now,' I'll chirp. 'Not further- deeper!'

But that's not real. Not to me. It is cheap for me to say that because that is not how I feel.

But here is the one thing that I have realized: it does not matter how I feel about my circumstances. Whether or not I feel satisfied by what constitutes my days- it does not matter because I am not entitled to anything more. I did not move willingly from the world of the healthy to the world of the sick, but then again, nobody does. Any moment of grace or joy that I find here is treasure, and I have found more of that than most people because I have been absurdly, obscenely lucky.

I thought I was owed more. My life until now has been so clear and carefree that it was easy to imagine that it would all continue to roll forward like that. I thought I was entitled to so many things, my health included, simply because I wanted them. But I was wrong. Thank god I'm finally beginning to understand that.
If you're interested in helping me get better, here is how, here is why, and here is how I'm going to say thank you.