brighter days

In the midst of it all, I picked up my camera again. I'd ignored it for a year- it was suddenly too complicated for my slow, foggy brain. Besides which, I wasn't entirely sure I wanted to remember this strange season, not in high definition anyway. 

Ever since David and I started dating I've meticulously documented our life together and created books of printed photos every six months. But the previous autumn, winter, and spring were nothing that I'd want glossily displayed on our living room table for friends to browse through. No wedding books or printed wedding photos either- I was terrified that if I kept getting sick, or if the medicine did not work as it does not work for so many people, I would have to leave Dave and go home to my parents house. I had to wait until I knew I would be okay enough to be a wife, till that time when everything wasn't so fragile; then the wedding would be real, then I could display photographic evidence of our marriage. 

By summer I was feeling better, better enough that not every one of our excursions was tinted with anxiety and fatigue. In the summer we would go days without mentioning Lyme disease; it began to feel like an afterthought. And so I created a beautiful book, filled mostly with swimming holes and waterfalls and rivers and lakes. When the book arrived in the mail, I declared summer officially over.

So I picked up my camera again, still rusty with the dials, but that will work itself out. I'm taking on work and marveling at how simple, even enjoyable, the articles feel as I type them out on my back porch. I still can't work from the coffee shops- noise is still very difficult, and I like sitting on our yoga bouncing balls instead of chairs. Chairs are too rigid, they make me squirm. One week I took on one article with Rootsrated, apprehensive to say the least. I remember earlier this year, sitting in front of the screen and crying, not understanding why my brain had forgotten how to write, how to form sentences, why my hands were shaking too hard to type. 

The one article took me a week instead of a day, but I got it done. The next week, somehow, I took on seven more. After that week, researching or writing from noon to ten pm I realized with a jolt- oh, hey, I'm back to work. How funny.  

When Rootsrated called and offered to send me to Nebraska to work with their Destination Marketing Organization, I was confident that I was well enough to travel. Believe it or not, it's rare to get to actually travel as a travel writer. I cover the Asheville area and the greater Southeast for the majority of my work, so I'm able to write from memory or imagination. But Nebraska? I know nothing about their outdoor scene, I'm excited to travel there on Tuesday and see a brand new landscape. 

I am looking forward to working again as a photographer. If you are local to Asheville and interested in a cheap session, send me an email : We can do a natural setting or someplace funky in town with all the crumbling stone, graffiti and railroad tracks. Because I'm just getting back into it, the rates are super cheap. 

I'm a strong proponent of photo shoots just for the hell of it. I don't think they need to be restricted to engagement, wedding and babies. I love shooting people just out with their friends or with their partner, no particular reason except they want to capture a nice day, a nice season of life. 

For New Englanders, I'll be home in Vermont from October 3-October 14th if you'd like to meet me there. 

I hope you enjoy these shots from a recent Saturday in the Blue Ridge Mountains with Erich and Melanie. It's so beautiful here. Autumn is off to a troubling start; this has been the warmest September on record and Asheville ran out of gasoline. My hope is that when I return from my three week trip to Nebraska and New England, the days will be crisp, the leaves on fire, and the blood they take every two weeks from my brachial artery will contain no more of this monster. 

If you're new, this blog is nearly 10 year old. You can read the whole story of my battle with Lyme Disease by clicking here.


 As happy as I was to reach the point in my treatment where I could be off antibiotics for two weeks at a time, the addition of Rifabutin to the mix crushed me. Rifabutin is a bright orange diamond shaped pill most commonly prescribed to HIV patients, and it leaves you so nauseated that even water feels iffy going down.

During the first two weeks of this new protocol, I started losing weight rapidly. I’d already lost a little over fifteen pounds since starting treatment in January, a lot of it muscle mass, but I seemed to have leveled out around 125.

Now the pounds started melting away and new bones emerged in my shoulders, my pelvis.

I went to three doctors about my newly enlarged lymph nodes, until the last one told me they weren’t actually enlarged, I just didn’t have any fat to cover them anymore. The barista at the café wistfully asked me one morning what I did to stay in shape. “I try and eat healthy, I run- but I want to look like you.”

I didn’t know what to say. I’ve never been weaker or in worse physical shape in my life.

“A pulsed regiment of Cipro, Omnicef, Septra Double Strenght and Rifabutin” would have been an honest response, but a very unhealthy one, perhaps vaguely illegal. A beautiful young woman with a gorgeous figure longing after the shape of a girl who has been sick for a year felt like a dismal report on society.

One day I stepped on the scale at a practitioner’s office in South Carolina and saw the needle fall below 120. I’ve never seen sub 120 numbers since I passed them on my way up. 119, 117- I was now lighter than I was in middle school.

I started to panic. I pictured myself in an OB office, a doctor informing me that a sudden drop in weight could be responsible for my inability to have a baby.

My theoretical infertility and the inexistence of this theoretical baby was constantly looming in the shadows of my mind, the greatest punishment from a god I thoroughly do not believe in.

There’s something about weight loss, it makes people suspicious. My mother sounds angry on the phone, so does my sister. David remains tight-lipped, refusing to say anything that might endorse this new shrinking wife. Unless you’re sick from chemo, there seems to be this idea that you are secretly in on it, quietly crazy about all the pounds flying off.  If you really wanted to gain weight, how hard could it be? Just eat some ice cream. 

At first my doctors tell me to supplement my diet with even more ‘good fats’. That translates to avocado, coconut milk and almond butter. Unfortunately for me I can’t stomach those things any more, besides it would take an awful lot of avocados to really pork somebody up.

Anything I ate back in the winter and spring when I was severely ill and terrified all of the time taste like rancid medicine to me now. Same with all the powdered maca and random superfoods I ordered off the Internet and now keep in glass jars on exposed shelving in the kitchen. Those powders and infusions provided more than just nourishment over the past year. I became obsessed with them, stirred them into concoctions that I would stage, photograph and upload to an instagram account I’d created just for them. Their powdery promises of miracles soothed me to sleep at night. I perused the Moon Juice website for fun. They became my friends when I was too sick to have real friends. Now they repulse me, they taste sick and sad.

On the two weeks off from medicine, I pitch my strict diet right out the window. My doctor looks at my charts and tells me to eat whatever I can whenever I can. That evening David and I walk to the ice cream store up the street from us, and I boldly order a kiddie cone. Salted Caramel. I lick it and then I throw it away. The sweetness burns in my mouth.

In the next few days, however, my body begins to steady itself. No more HIV meds, no more Cipro, for two whole weeks. One night, out to dinner with Erich and our friends Cliff and Kate, I order a grasshopper milkshake. It goes down easy. Thus begins a regiment of daily, light green grasshopper milkshakes.

But 2hat about the inflammation? You might be asking yourself, clutching your glass vials of camu-camu. The casein! The sugar, for chrissakes! Fuck it. When you can’t win you may as well enjoy the taste of losing.

I go deliberately off the rails. I seek out desserts around the city even when I don’t really want them. The only thing I avoid is gluten. Long-term antibiotics can make you gluten intolerant for the rest of your life, even if you had no problem with a slice of bread when you were healthy. In ten days I take down a boatload of sugar. It would have shocked the pants off of my new community of autoimmune paleo lyme and MSIDS patients. I would have been kicked out of the club.

 One afternoon I take Whitney to a swimming hole up on the Blue Ridge Parkway. Whitney has been extremely sick for about two weeks, but I know if we can just get her to the water, the cold shock of it will help relieve at least a portion of her pain. It works out, we both feel better. In fact as we are driving home I feel so normal, so vivacious even, that I suddenly find myself daydreaming about an Oatmeal Porter from Highlands Brewery. Emboldened by my moment of good health, I blurt out, “Whit, what do you think would happen if I drank a beer?”

I expect a sinkhole to open up and swallow us down for voicing something so ludicrous. I expect Whitney to shake her head and tell me what a grave, grave error it would be. I haven’t tried alcohol for well over a year. I have the MTHFR gene mutation that makes methylation difficult, meaning I have problems detoxing even the everyday, unavoidable toxins. I spent the past ten months in what felt like one long continuous magnesium-salt bath, trying to rid my body of poisons. Now I wanted to drink a whole bottle of it?

Instead, Whitney says something truly shocking. “Nothing. I think nothing would happen.”

Later that afternoon, I hike up to Haywood Ave and buy myself a six pack of Oatmeal Porter from the Brew Pump, a gas station/bar hybrid that’s become the place to be in West Asheville. I half expected the cashier to stop me – “Woah, not for you!” in the same way that I half expect god will prevent me from having my baby. “Not for you!”

But she doesn’t even ask for my ID. I walk home with the sixpack in my hand, cutting through the Tuesday farmers market at the end of my street and ignoring the woman who normally sells me mason jars full of raw milk. I was going rogue.

Back home, I open one bottle and drink half of it. I wouldn’t say nothing happened- I become immediately intoxicated. While preparing my world-famous paleo pizza, I lose control of the knife and slice my finger so deeply that it would still be bleeding the next morning. I felt liberated and terrified. Then I poured a bath and sat in it, waiting for the world to end, or at least the hangover from hell. I had consumed half of a bottle a beer.

In the end, Whitney was right. Nothing came of it. I woke up the next morning and felt fine. Besides my new status as a mega-lightweight and a scar across my fingertip, it was entirely anticlimactic, which is exactly what I wanted. I didn’t want another beer, I just wanted to know that I could pose as a normal, healthy person for a few minutes and get away with it.

In fact, as the days fold forward, I do feel like a normal and healthy person, if perhaps a rambunctiously hungry one. I put on a few pounds and float through a string of miraculously easy days. Life seemed to be marching forward. Then Monday comes around again, with its twice daily handful of capsules. The nausea returns overnight.

“You would have been fine just losing a little weight,” says the stern god-doctor in my head. “But the yo-yoing, the up and down, that’s what’s costing you.”

Sometimes it all feels a little useless.

Click here to see all the posts relating to my Lyme Disease story. 

Rose Gold

This post is written with love to and solidarity with Heather Ann Brauer

We spent another weekend up at the farm, this time for Charli’s tenth birthday. Charli is one wild piece of moonlight, and Dave and I could barely keep up with the birthday party itinerary that Charles and Sarah had put together. There were presents and cake, a piñata, painting, a water balloon fight, slacklining and games of flashlight tag and Cherokee-Iroquois. After dark the forest was filled with flashing LED balloons and streamers, the kids covered us all in glow in the dark body paint, held spiting gold sparklers and roman candles, and long after I crawled into the tent, Charles let off a whole fireworks show. 

Do you think we’ll be able to pull something off like this for our kid?

David asked me at one point, genuine concern in his voice.

No flippin way

- I told him.

We’re hiring Sarah and Charles to throw our kid’s birthday parties. 

 Along with our Boone friends, Erich and Melanie camped out with us that night along with Rosie the dog, who has seizures. Erich suffered from acute Lyme disease this past summer but he’s getting much better. As for me, I’ve finally reached the two week on/ two week off portion of my treatment. I’m only one week in and I’m nervous about going a whole fourteen days without medicine, my immune system is very wobbly right now, like a fawn. But I can’t be on this regiment forever, I have to start weaning off the killers at some point.

This protocol is composed of extra heavy antibiotics. and after eight months of treatment my stomach has officially gone on strike. I’m on a diet of mush, just like a baby. I’m eating rice overcooked in bone broth and lentils overcooked in bone broth. Bone broth better be all it’s cracked up to be because I’m putting a lot of stock in it. (THAT PUN! YES! Yonton that was for you.)

From up at the farm, you can see a view of Roan Mountain and miles of rolling Appalachian on either side. On Saturday there were storms stretching across those mountains, with big silver showers of rain and strikes of hot, quiet lightning. Through big patches in the storms, the sunset glowed rose gold.

We burned old Christmas trees and Erich played the guitar. Erich is an incredible guitar player. This time he had babies crawling on him, and the babies were playing egg shakers and were so entranced by the music that they acted stoned out of their gourds. Maybe that’s what it's like to be a baby- you hear or see or feel something that pleases you and it makes you instantly stoned. Man. If only.

I was knocked flat with a migraine after the sun went down, but it was still a lovely evening. I just brought my pillow and blanket down to the fire and lay there, absorbing all of the nice things and people through my ears, and to be honest it was great to have an excuse not to play freeze tag. Those ten year olds swear that they’ll play by the rules but they never do.

 David later told me that it was hard for him to see me down for the count, again, but it wasn’t so bad for me. I’m not saying you get used to pain, the whole point of pain is that you don’t adapt to it, but once you can scrape clean a few layers of fear, guilt and disappointment and you’re left with straight physical discomfort, it’s not terrible. As long as the kids didn’t blow their whistles near my head I was totally content to lie by the fire with my friends all around me.

I anticipate perfect health sometime in the future, but right now I’m still recovering and I never expect to feel well. When I do feel well, and there are hours and days that go by when I do, it comes as such a welcome luxury. It’s like preparing for sleeping out under a damp and overcast sky and getting a meteor shower and a warm breeze instead.

I explained this to Dave and he explained that while he was relieved to hear it, he just couldn’t understand reaching that level of acceptance.

When you’re not given a choice, it’s incredible what you can learn to accept.

Huxley barked the whole night through and that big tent filled with girls never stopped shrieking with exhausted laughter, but I finally managed to coax myself to sleep with reading and trazadone, and another summer weekend up at the farm drew to a smoke and star-filled close.

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Photobook : 100 Years

Great Smoky Mountain National Park
Big Pharma and the Epi Pen outrage: maybe one day that will be a hipster band name and nobody will understand the reference, because the days of unfettered capitalism and a CEO's casual raise of 8 million dollars while kids die from bee stings will be long buried in the past. I love this country but it's got some big ass problems.

Today is a very special day, however, a day to celebrate something that this country did very, very right: our National Parks! And monuments, markers, memorials, preserves and scenic trails byways. Today our National Park System turns 100 years old. David and I celebrated (a few days early) by hiking into the Great Smoky Mountain National Park right over the Tennessee border and finally exploring Midnight Hole.
Great Smoky Mountain National Park
Great Smoky Mountain National Park
While I've written about Midnight Hole many times for outdoor magazines, I've never actually visited there myself. Reason being is that our sidekick shorty, Hometeam, is not allowed inside the GSMNP, and it's no fun exploring without her. Well.....except just this one time. That place is so heavenly green, it really is just like swimming inside of an enormous, ice cold emerald. David and I had such a nice, easy breezy afternoon inside the Smokies. I came home feeling so grateful to the park for providing us with a place where we could feel so happy, healthy and normal again.

That led me to think about what a role the National Parks have played in our relationship: Dave and I never would have met if I hadn't run Colorado river through the length of the Grand Canyon in February eight long years ago. We got engaged on the Appalachian Trail, the National Scenic Trail that connects our home in Asheville to the backyard of my childhood home in Vermont. We explored Acadia on our honeymoon and have depended on brief excursions up the Blue Ridge Parkway to keep us sane during this past year.

Of course we were both busy exploring the parks long before we met one another. I spent a semester in the Southwest in high school learning to climb and camp in Zion, Arches, Escalante, balancing along the razor sharp ridge of Angels Landing and running through the Hoodoos. Then eleven years in Washington - between the Olympics, the North Cascades, Rainier and all the monuments and reserves, they may as well go ahead and turn that entire state into a National Park. I worked on the Endeavour on the inside passage of Alaska getting my mind blown every single hour of every single day with calving glaciers, the frigid stillness of Glacier Bay's silty turquoise water and the enormity of it all. For my high school reunion we roamed through Yellowstone and on a solo drive across country I managed to witness the strangeness of Mt. Rushmore, accompanied by my gentleman's flask.

Here are some shots from over the last sixteen years of exploring. These photos make me want more! I cannot believe I still haven't been to Yosemite, maybe that should be next. (After the Badlands, of course, since I've only been to South Dakota once, and also Glacier National Park - I'm ashamed I've never been there because I've spent weeks in Whitefish, just never went inside the park boundaries, and obviously I should visit the volcanoes in Hawaii, and.......) Alright, I need help: what's your favorite National Park?

Yellowstone National Park
Yellowstone National Park
Grand Canyon National Park, Ammen Jordan Photo 
Grand Canyon National Park, Fay Roepcke Photo 
Grand Canyon National Park, Ammen Jordan Photo
Mt. Rainier National Park
Mt. Rainier National Park 
Mt. Rainier National Park
Glacier Bay National Park
Glacier Bay National Park
Glacier Bay National Park
Glacier Bay National Park 
Mt. Rushmore National Memorial 
Acadia National Park

Acadia National Park 
Acadia National Park
Acadia National Park
Ebey's Landing Historic Reserve 
Ebey's Landing Historic Reserve
Ebey's Landing Historic Reserve
Grand Canyon National Park. Photo by Ammen Jordan 
Grand Canyon National Park 
Grand Canyon National Park
Appalachian National Scenic Trail 
Blue Ridge Parkway 
Blue Ridge Parkway 
Escalante National Monument 

Folly Beach

this post is written in gratitude to Teal Emyln, who has shown me such warmth, love, and art.

Over the course of the past year, I haven't given much thought as to whether or not the people in my life, from the readers of this blog to my closest friends, have believed -for lack of a better word-just how sick Lyme Disease has made me. The pain, fatigue and insomnia are so vicious and destructive when they swell that to even consider having to validate them to others is a ridiculous notion. 

I know people who have struggled intensely with this issue, their level of disability and despair are challenged by the very people who should be providing them with the warmest care and most tender support. 

I've managed to escape, for the most part, this particular callousness, but there will always be those whose judgement can never be avoided. If you post pictures of yourself from inside the deepest of gloom, hospital gowns, oxygen tubes, the rumpled self portrait of the third consecutive day in bed, pale skin, dark eye circles and sweat- then you're asking for pity, stuck in a self-perpetuating cycle of negativity and inactivity, driving yourself towards decay with full compliance.

Just get out of the house, go for a walk, you'll feel better!

But when you project instead the image of all the things you still can do, standing in the sunlight, happy and at ease, color in your face and your hair is wet, eating at a restaurant with a friend or sitting with your back against a tree in the middle of a forest, good heavens, even exercising- then you're not so sick, are you?

We knew it. 

I won't go any further into it, because the last thing I want to do is set an example for other Lyme sufferers that they should ever have to feel the need to validate the new world that this illness has created for them, and all the outrage, pain and struggle that can exist inside of it. But I am becoming curious as to how my story, which has been stretching on now for over a year, is being perceived. 

More specifically, I wonder how I - the old me, pre-illness- would feel reading this story if it were about someone else. Every week I meet with one or two Lyme patients, and through hearing their experiences, as well as certain excruciating moments of my own, I have been exposed to a level of suffering that the old me simply could not have understood.

 I can see the old me growing frustrated with the character on this blog, the girl who keeps assuring everyone she's getting better and yet she's still not in remission, she still cannot work full time, still has no children, why isn't she working just a little harder? Her words are becoming monotonous, sometimes even inconsistent. What could she possibly be doing with her time? She must not truly want to be healthy. At this point, this has to be of her own making. 

Are these the type of thoughts that would be running through my mind if I were to have read this just two years ago? I think yes, although it's painful to admit that. I've had similar notions in the past towards others whose pain completely outside my realm of understanding, whose misfortunes seemed endless, although I would never have had the indecency to question, blame, or accuse them directly. 

I have a friend with a similar strain of Borrelia as I do. She is quick witted and funny, curious and smart and proactive. Recent photos show her laughing on a dock that stretches into a foggy lake in the early morning, cuddling a baby nephew at a birthday party with a look of dreamy contentment on her face. Yet she sleeps every night with a razor on her bedside table, the idea that she could choose to escape the pain and indignities of her illness being the most comforting thought to her, so soothing that it is what puts her to sleep. That is the maddening and nearly incomprehensible juxtaposition of invisible illness, and it makes sense to me if you do not understand. Two years ago, I certainly would not have understood.  

These photos are from a two day trip last week to Folly Beach outside of Charleston, South Carolina. Whitney had been spending some time on the ocean after a wedding, and was feeling so renewed and healthy being so close to the water that she invited me down for a mini Lyme retreat. The past week I've been on an antibiotic "holiday"as directed by my doctor, hoping that my immune system will kick into action and do some work on its own. These holidays are not holidays at all, it was a week of extreme fatigue and spasms and a pounding heart. You may have even seen me up on Haywood Avenue, sitting down on the sidewalk every few yards as I try and walk the dog. The five hour trip to Folly Beach sounded daunting, but I knew that water and sun and a change of scenery would be a real benefit to my health overall. 

We had a wonderful few days, but you probably would not have wanted to come along. Whitney's health began to crash when I arrived, and despite the slow improvement in my strength and energy that accompanied the joy of being on the ocean, I still couldn't venture more than a few minutes out of the beach house. We went swimming in the salty, sun warmed Atlantic, relishing the power of the waves crashing over our heads, and then laid down in the house with the shades drawn for an hour. Another excursion, this time to a local park on an estuary, but it was too hot and there was no shade- we paid the entrance fee but we had to leave. 

The trip was not without triumphs. On the advice of one of my readers, we found our way to the enormous, ancient "Angel Oak" on Johns Island. We found a farmers market with a cooling breeze and a Venezuelan food truck, we both slept well from the intense heat of the day, we ate Cuban Food outside in a rain storm and enjoyed one another's company immensely. I was able to return to the state park in the evening, when it was overcast. On the third day we had planned to venture into Charleston to explore a local homeware store I was interested in, and stroll down Broad Street, but instead we drove home. We were both crashing quickly, and what a luxury it was to not feel guilt about ending a trip early. 

I treasure these trips with Whitney, feeling such a close and almost cozy kinship with her. But the illness flared viciously for both of us upon returning home. This week, I gratefully began what should be my final, four month long protocol with the addition of Rifabutin, a brand new antibiotic for me. As soon as I was back on the killing drugs, I felt better, lighter and stronger. I am doing the work. I am doing all of the work. I want to be healthy again more than I've wanted anything else in my life- but then again, you understand that.  

Final Stages

This post is written especially for Gayley and her kindness. Gayley, there is something very special in the mail for you!

Mid August, and we are beginning to detect a change in seasons as summer rolls into its final stages. The heat and humidity of the day are still too much for me, especially since I'm burning up on the inside with a fever that ebbs and rages but never quite leaves me completely, but long afternoon rain showers are becoming more common, the evenings fall earlier and bring with them a drop in temperature. Before bed we open all the windows and turn the fans on, and the house takes a deep breath as the air starts moving through.

I can not remember ever being so enthralled with the seasons turning, not even in Vermont where the shift from summer to fall is so sharp and vibrant. I have never wanted, or needed, time to pass as quickly as I do now. Every day that passes takes me one step farther from the past winter and spring, which, looking back on it, feel like nothing but a fog of fear of despair.

These days- in their sameness and their routine of pills, chores, rest, walks- blend together, and on the days where it seems like I am not recovering, the very essence of time starts to blur. Doesn't there have to be change in order for there to be time? Maybe not. I don't know. But then in the midst of such questions I'll see an advertisement in the paper for Halloween decorations and it reminds me that things are moving forward, however slowly, however strangely.

Whoever designed that particular advertisement and arranged it in the right hand corner of the Mountain Times had no idea that a girl, sitting at the breakfast table one morning, scratching the dog with her foot, would find such triumph in reading it. That she would stand up and exclaim, "I KNEW IT!" then march it over to the bedroom where her husband was still waking up and say, "You see? This summer will end! It should be over soon!"

Not that it's been a terrible summer, not at all. I listen to a podcast called Lyme Voice where on each episode they discuss their "Fight Heal Live" mindset. I believe that I spent the past three seasons Fighting, and somewhere back in June I transitioned over to Healing. I can't wait until this is all behind us and I'm back to Living, but healing is a breeze compared to fighting.

Fighting was fear and convulsions and herxing and tremors, fearing food and telling my husband I was ready to give up and crawl back home to my childhood bed in the upstairs of my parents' house. Fighting also meant taking my medicine at exactly the right time every singe day, spending hours each night researching and taking notes, weekly acupuncture and therapy and daily PEMF treatment, salt baths, saunas and screaming and conjuring an enormous amount of strength and courage just to get out of bed every morning.

I wouldn't describe my summer as anything like that. Now I sit across from Whitney at the cafe and compare symptoms the way two mothers might compare the behavior of their two year olds. We roll our eyes and pay half attention- what's new this week? I'm sure this stage won't last too long, what else is new?

Yesterday I even forgot to take the Killing Medicine in the evening, which was not good, but it meant that my illness was not the first thing on my mind. Dave and I were at the YMCA swimming leapfrog laps, which means we swim under one another like leapfrog (four whole laps!) and we were having the greatest time, when we got home it was almost 10pm and after taking the dog for a walk we went straight to bed. In all the normalcy I forgot to swallow my Omnicef, Cipro and Mepron, it was fantastic. And it set me back one whole day.

I went to see a regular doctor the other day, not a Lyme specialist, and he frowned and appeared quite concerned about all of my enlarged lymph nodes. If my CBC was off just a little bit, he told me, he'd send me to the hematologist. I left that office shaking and light headed with fear and frustration- I'm so


of this! Every time my phone rang for a week I'd jump out of my seat but it was always something innocuous- the computer store, the North Carolina Democratic party, a wrong number. Eventually the results came by mail, everything is normal. The doctor called later that day with a follow up. "Who knows," he said. "With Lyme, all bets are off."

My LLMD, June, told me my last visit that she's thrilled with my overall progress. In two weeks she's starting me on a four month course of Rifabutin, Minocycline and more Cipro and after that- I don't mean to jinx anything here, but I could transition to a year of maintenance antibiotics, which sounds like a walk in the park compared to this past year.

 One thing she made clear, however, is that because of my personality, I'm at a big risk for "Blowing it." Those are her words. David agrees with that wholeheartedly. He sees me wanting to take on more and more as I start to feel better- more writing assignments, bigger excursions away from the house, more exercise. We've agreed that traveling to New Hampshire for alternative treatment at a Lyme Clinic in September, a couple of low-stress articles for Roots Rated and a low residency course in positive psychology coaching that I'm starting in October along with Whitney should be more than enough. I'll travel home for Christmas but no trips besides that.

Other than that, it's just more of the same. Finding waterfalls to swim beneath, writing thank you letters, swallowing a handful of medicine each night to get to sleep, listening to podcasts as I do the dishes, trying to speed up time with my mind, keeping a tally of every clue that autumn is almost upon us, trying not to blow it.

We're not dead, Evelyn

This post is written in gratitude to Kelly Koetsier and his family, who have been a beacon of light in the form of sanded Burl.

Whitney and I have made good on our promise to get each other out of the house as we start to feel better. It's been a beautiful summer here in Western North Carolina and we are grateful for every day that we get to wake up and enjoy it. 

I saw June the other day, my Lyme doctor, and we agreed that since I was still running fevers and experiencing severe dyspnea, it would be unwise to continue with the treatment plan we'd come with a few months prior. 

I thought that after five month-long rounds of a complex protocol targeting Babesia, a co-infection similar to malaria, I would be free of that disease and ready to roll on. Instead, June wrote me yet another rounds of script for Omnicef, Septra, Mepron, Flaygl and Diflucan. I told her I couldn't do the Coartem tablets anymore, not if there was any possible way to avoid them. There are only so many times my husband can find me lying on the kitchen floor, too nauseated to even explain to him why I'm down there. June agreed. No more Coartem.

Just last Tuesday the temperature mercifully dropped a few degrees into the mid-80's. Whitney and I took that as a sign that we ought to take one of the field trips we'd been dreaming up. We spent the morning picking blackberries at Hickory Nut Gap Farm and feeling remarkably healthy out there under the afternoon haze. We had the thickets alone until the last fifteen minutes when a pair of middle-aged ladies suddenly appeared. One of them must have overheard Whitney and I talking, because out of nowhere she popped up behind a bush and said, "You girls here about the 5,000 year old man they found perfectly preserved?"

Whitney and I looked at one another. We shook our heads. 

"They found a spirochete in him, too!" She exclaimed, fanning her face as if she was on the verge of fainting. "I certainly hope you girls were tested for co-infections, because there's one....eurlich- eurlichia? I can't pronounce it but it'll kill you in three days."

"Stop it, Evelyn!" Her friend piped up, straightening up from the row behind her. "They're obviously not dead." 

That's right, Evelyn, we're not dead and we're lucky. In fact there are moments that come and go when I feel better than I have in years, owing to the fact that the mere absence of pain still makes me feel like I'm floating on the Dead Sea- weightless and soothed. I wonder what it would take to be able to hold onto that feeling, even as I continue to get better and this all fades away behind me, that even something as mundane as walking across a parking lot to reach the drug store is a miracle. 

After the berry picking we floated down the road to a farm stand that accompanied a field of pick your own wildflowers. There was nobody around, just a bucket to put your money and rows of produce in foggy glass bins. 

Whitney and I like to talk about the future, our upcoming treatment at a Lyme clinic in New Hampshire and a positive psychology coaching class that's starting in October. Something about hour we passed inside the long, quiet rows of bright zinnias, however, made us feel safe enough to bring up a little of the trauma from the past year. 

"I used to wail." I said. "All January I just cried and wailed, I didn't even sound human." 

Whitney nodded. "I had those days. My boyfriend would say, 'This can't go on like this. This can't go on like this."

It's taken a lot of hard work to get where we are, a place that June assures me is "halfway there" although it feels much farther than that. I've only had one new symptom lately- an intense pain that wanders up and down my right leg, and then the muscles of both legs will suddenly seize and become rock hard. This happened to me at the farmers market down the street the other day and I fell forward onto a booth, narrowly missing crushing about two dozen fresh eggs and startling the farmer. I picked myself up, brushed myself off and told him I must have tripped on something. 

Every day as I take my medicine in the morning, I hold my breath and pray that the heart pounding and the dyspnea do not return. At a recent Lyme event that I co-hosted, an older woman cupped my face with her hands and told me urgently, "You will never get rid of the Borrelia. Ever! It's with you for life. But the co-infections: you can kill them. You can eradicate them- be diligent! Promise me!"

I promised her so I could have my face back, but it was her voice that I heard in my head when I agreed with June to do one more round of anti-malarials, just to be thorough. So far, besides a fever of around 99.9 that emerges about an hour after I take my medicine, I haven't seen any evidence of a Herxeimer reaction, which means there is less and less Babesia left to kill in my red blood cells. My body is burning it off from the inside out.

Four pounds of blackberries yielded five half-pints of spiced jam sweetened with honey. I've taken up canning and preserving as a way of keeping busy inside the house, where it's cooler and I can quiet and calm and alone. By the time I filled up one whole cabinet with over 20 jars of preserves, however, I realized I'd discovered something that I truly love to do.

I wish I could say I loved going to museums and art galleries and movies, as it would certainly make me a more well-rounded individual, but I generally can't find the interest. David and I both have short attention spans and endless reserves of energy when we're healthy, and what we lack in creativity when it comes to entertaining ourselves around town we make up in a genuine delight in exploring in the wilderness. Besides for reading and straightening up the house, I'm not quite sure what to do with myself when I'm inside. At times, these past six months of being quasi-housebound felt like they were killing me, although in reality they were doing just the opposite.

Now that I'm putting up food, I've found a way to pass the days in a happy and satisfying manner while still reserving most of my energy to fight off the diseases. David comes home in the evenings and finds me on my feet in a cloud of steam, the kitchen splattered floor to ceiling in boiled raspberries, or I crawl into our bed hours after he's gone to sleep because I've been waiting on the boiling water bath for the tomato sauce, and I can see him start to soften around the edges, begin to let go of the fear that this might never end and have faith that after so many dark moments the two of us might make it out of this thing together. 

Thank you for helping me to win this battle against Neuroborreliosis. 

Here is how to help, and here is how I am saying thank you.

Field Games

Thank you for helping me to win this battle against Neuroborreliosis.

Here is how to help, and here is how I am saying thank you.

Catch up here if you're new.

Halfway through family night last Friday, I hit the ground. The tile in the kitchen is cool and hard, two thing that are remarkably comforting when you're overwhelmed with nausea. David's been in the shower for forever, it seems, so Erich brings me a pillow and a bowl to throw up in. I've already prepared all the fixings of my world famous paleo pizza, but since I can't get off the ground to assemble it I try and tell Erich what to do.

Erich tells me he's an adult and he's made a pizza before. I tell him he needs to listen to me because I have to explain my patented multi-stage cheese-as-glue-for-toppings assembly process. He ignores me. David comes out of the shower, sees me on the ground, and turns on his heel to run me a bath.

It's sweet, but I think he just wants me to get out of the kitchen. As the water fills up the tub, I watch as he ignores the rolling pin and starts hammering out the dough with the heal of his palm. I say, "what's your friggin problem with kitchen utensils? Why can't you just use them?"

I am banished to the bathroom. I stew inside my bath. Then I throw up, and immediately I'm hungry for pizza. I have to eat it on the ground, with my back against the wall. "Do you want to come sit with me?" Asks Dave. I say, "No." The austerity of the floor feels good. I don't bother to explain that.

Erich has been on the West Coast for a few weeks, and we are ecstatic to have him back home with us. He crushed his medical boards, and David passed his national real estate exam, so I suggested a family night to celebrate all their accomplishments. We would have pizza and then go out to see Swiss Army Man at the movie theater.

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In the morning I checked my color coded medication schedule and dutifully swallowed four Coartem tablets. And sometimes around the pizza assembly stage, they kick in.

Things start to get worse after dinner. I lie down on the porch floor. The dog hovers her big, curious face over mine, then wanders off to find someone less pitiful to scratch her. I'm too nauseated to speak, which is something that you completely forget about when you're not nauseated, and then when you are, it's tough to explain, because that would require words.

Dave is mad that I've exploded the kitchen making the pizza and then he has to clean it up because I'm suddenly too sick. After a year of this, you might be angry, too.

Something is wrong with Erich's knees and he's in a terrible mood. Dave turns the porch light on and needs to know where the dog's eye medicine is. His voice is too loud. The light is too bright. He leaves to take the dog on a walk, leaving the light on, and suddenly I'm angry that I've thought to have a pizza night (and what fun it is) to celebrate their accomplishments and yet there's no pizza party for me having finally finished my fifth and (I wrongly assume, final) round of my Biofilm and Babesia Part B protocol. Tears start to stream down my cheeks. Erich goes into his room to talk to his girlfriend.

Before bed, I debate swallowing another four more Coartem tablets. I can't stand the thought of feeling this way for a minute longer, but I have to take them. I swallow them and head to my bedroom inside a little cloud of misery.

Dave has set up some blankets on the floor for me to sleep on, and dropped some peppermint oil into the diffuser,  which helps. Erich sticks his head in the room and says, suddenly jovial, "This felt like a real family night!"

And then we laugh, and laugh, and laugh. Erich sits down next to David on the bed above me, I swallow my sleep cocktail and drift away, holding David's hand, feeling very cozy and skinny.

Everybody that I know is getting pregnant. I knew this would happen, but there's no preparing for it. Nothing kills my mood like a cute little announcement, always precious, sometimes coy, always involving a pun. Two bags of ice and an ultrasound: Ice, Ice Baby!!!! Two pairs of grown-up shoes flanking a tiny little pair of baby moccasins. You know what I'm talking about.

Of course I'm thrilled for my friends. I'm not a monster. But it isn't easy. Each announcement reduces me to a child at an amusement park, the one who is still too short to get on the roller coaster and already a little sick from chewing an enormous wad of cotton candy.

Why do they get to have what they want? Why is it so easy for them? So instantaneous! Where is their struggle?

These are the sorts of enlightened questions I pose to a God that I do not believe in.

Why not me? 

The answer is the same, every time. Delivered from the puppet mouth of a Monty Python-esque God in the clouds - beard, robes, staff, booming voice:

Because you want it too badly. That's why.  

My doctor, I'll call her June because she looks like a June, has a different answer:

"Because you are currently battling the fight of your life against an insidious bacteria that has been living inside of you for a decade. Because Borrelia is congenital. We see 20 week miscarriages. Stillbirths. It's passed through breast milk. Babies born with Lyme are a tricky situation. Mothers too sick with Lyme to care for their babies is a tricky situation. Every medication you are taking is designed to kill. Because you are halfway there and you need to stay the course. Because I Want It Now is not a good enough reason."

"Shall I go on?" June asks, looking at me directly in the eye, as she always, always does. "Because it's your decision."

If you've been wondering where the most happening place to be is this summer, let me tell you: it's the Asheville Eye Associates Medical Square Park location at 8:15 in the morning. The line was already out the door when I arrived. My appointment was thorough and included three hours of reading charts, poking at dots of light, and having many people in white coats shine bright lights into my pupil. I've never been to an opthamologist in my life. I received an A+, 20/20 vision, and no sign of 'current or previous optic neuritis.' I went home weak with relief and instead of my nice blue eyes, I had two big black circles inside a little ring of white. To celebrate, we drove up to Boone and played flashlight tag, which, looking back on it, was a strange choice.

Uncomfortable as it was to have a flashlight pointed at your dilated eyeballs, nothing could beat the joy of camping out at a Christmas Tree Farm with a gaggle of ten year old girls and a few of our best friends. We played capture the flag and freeze tag between the rows of trees. There were clear skies and a bright full moon underneath which we roasted hot dogs and the girls stuffed their mouths full of marshmallows until they, too, threw up in the tall grass behind the fire pit, and everybody was happy.

I had been careful to ration a few of my pain pills for this outing, and as a result I felt very close to normal, with one exception: my heart was beating so hard you could see it pounding through my T-shirt. A combination of babesia herx plus the sudden spike of energy it took for me to dash from my side of the field into enemy territory to grab the bandana during capture the flag was enough to take me down. Flag in hand, I dropped to my knees and crawled over to where the cars were parked, and then I slid my body beneath a truck and waited there, talking to my heart as if it were a horse.

Woah, girl. You're working so, so hard. It's time for you to just calm down, there. Let's give it a minute.

About twenty minutes later, I emerged from beneath the truck and crawled slowly and sneakily back to my side, where I triumphantly tied the flag to the Christmas tree- victory!- only to discover that the game was long over, we'd lost.

I had an appointment with June yesterday. I told her how I felt like I was in the last 10% of healing, and how I have to explain to Dave that the last 10% of healing is harder than the first 90%. She just smiled at me, looked me in the eye and said, "You're halfway there, Melina. Halfway. And you're doing so well."

Then, after hearing about my heart beat and air hunger, all signs of a persistent Babesia infection, she put me on one more round of Lyme Biofilm and Babesia Protocol Part B. This time I won't have to take the Coartem, because they made me too ill, but it's still one more month of Mepron, that $3,000 bottle of poison. You know what I wish I could do with that 3,000 dollars? Furnish a nursery and buy one of those stellar celebrity strollers that plug into your telephone. But there I go again, pitching a fit at the carnival. I must have eaten too much candy.

consummate actress on a morphine drip

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.

Relapsing Remitting

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?" 


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.  

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!!


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

- You can catch up here, if you need to - 

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. 

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. 

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. 

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.


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.

I've decided that today I am going into remission

I have decided that today I am going into remission. 

That means that this is the last time you're going to see what Lyme Disease- no, wait- what Multi Systemic Infectious Disease Syndrome (that's what we're calling it now) looks like. At least in my life. 

It's been a terror and a mess.

It's a bore and I'm done with it. A cure, as in the complete eradication of the disease-causing agent, feels so complex and improbable that right now I will settle for remission. I mean, think about it, we're attacking this thing over and over and over- it's bacterial, it's fungal, it's viral, it's a parasite- in order to achieve the cure and yet nobody knows for certain if a cure is even possible. 

But I'm starting to feel better now, I'm starting to feel as if I'm inching towards remission. So maybe that's what I've been after all along- reaching the point where I can coexist with this thing. Forever. Maintenance and monitoring and medicine for the rest of my life. Or until they come up with something better. 

Anyway, here is what it looked like on a bad day. Here it is even though I don't want you to see it, exactly. I just don't want to forget it. This is important for me to remember. 

Fun Friday Flip Out #2

First, some business: If you're just joining us, would you like to read my Lyme story from the beginning? Catch up a bit by clicking here.

If you'd like to listen, I recorded an episode with The Dirbag Diaries. Click here to listen to The Miracle of Darkness. 

Now. On with the story.
A huge thank you to Brenna Hersey. Check your mailbox girlfriend!
Hello and welcome to the second Fun Friday Flip Out here on the Wilder Coast. So what if it's Saturday? I was not feeling too well yesterday, but today is A-Ok, so let's just go with it. Fun Friday is a time to relax, enjoy ourselves and focus on the good things.

It's one thing for me to want to give an accurate portrayal of life with a space-age, misunderstood, hotly-contested, often debilitating and fascinatingly complex disease, but I'd rather not do that at the expense of all the color and contentment in my life, because how long is this thing going to drag on? I have no idea. Maybe I just have to get used to living like this. Good days and bad days. Here are some of the good days. And remember, on these posts I get to loosen up and write just like we were chatting at a cafe.

David, the dog and I went hiking at Mt. Mitchell State Park. Mitchell is the tallest mountain East of the Mississippi, can you believe that? I would have put my money on Mt. Washington, and I would have lost my money. The views up there are heavenly and slightly overwhelming. The wind was blowing and I walked to the edge of every cliff and peered over, I have absolutely no fear of heights. David has a fear of me walking next to cliffs, however, because my balance is not everything it should be at the moment. I miss climbing a whole lot. I can't wait until the day I'm better enough to climb again. Better enough- that should be my new goal. 

Most of the time, Lyme symptoms keeps me tethered to my neighborhood. I'm living very locally these days. I consider small outings to be great adventures. This week, Kelli and I ventured over to Villagers, the urban homesteading shop down the street, so she could buy a new cactus. I didn't like her cactus because it bit my finger, but she found it just delightful.

 I pay much closer to very small things. I'm getting to know the immediate world around me in great detail. 

Molly and Yonton took me to a brand new cafe by their house. It's gleaming and gorgeous inside and it made me miss Seattle for a moment. It was a brilliant day, clear and nearly 90 degrees, so we sat inside under a fan and drank iced coffee. Then we walked back to their house on a street I've never been on, stopping to examine gardens filled with poppies and azaleas, colorful walls and vines growing on fences. 

It's wonderful to have friends who don't mind taking the smallest excursions with you.
There's a nasty man lose in the wilderness right now. He tied a woman to a tree up at Craggy Gardens and almost beat the life out of her, but she lived. He's been spotted a few times but not caught, so everyone is advised not to hike alone- not even in the local parks like Bent Creek or Richmond Hill. The poor dog is getting sick of trotting on pavement as we wait for this guy to be removed. A few days ago, Steffi and I went to Bent Creek together and ate strawberries as Hometeam took a grateful dip in the water. 

Although, I am not supposed to eat any fruit. Too sweet. Can you believe that? What a bother.

Abby and Ella from Tera Preta Farms brought over a huge box of greens. They were off to Cincinnati for the weekend to see Abby's parents and they had a surplus of collards and enormous kale, bigger than the ears of an elephant, so they brought them to me. We sat on the back porch for a little while and drank cucumber spritzers and caught up until my eyes stopped tracking. When my eyes stop tracking I have to go lie down and lie black stones on my eyes, like some sort of old-school Egyptian corpse. That's me! I didn't think I could get through that jungle of greens all by myself but I did- I pulled up a stool next to my juicer and for two days straight, pausing only to sleep and use the bathroom- which, as one could imagine, was more than a few times- and juiced everything and then drank it. That's really all I did for two days. Now I feel like a superhero.  

David and I went to our friends Laura and Steve's wedding. I had to spend most of the afternoon curled up on the couch (the wedding was at Laura's family's cabin) but luckily, around 8pm my energy came back. It does this- I wrote about it a few months ago- I really come to life between 8 and 10pm. I googled it once, because it is so pronounced, and it appears that becoming wildly energetic between 8 and 10 is a symptom of adrenal fatigue, if you choose to believe in such things. Whatever if is, I live for those hours. I danced for two hours straight. People told me I had a wild look in my eye.

A long time ago, a friend of mine named Jess taught me that when it's time to dance, put your hair in a side pony tail and just go to town. So that's what I do.
join The Wilder Coast on Instagram! @thewildercoast
On the dark drive home from the wedding, David and I wrote a lengthy and involved joke about a pack of marsupials, and when I see you next, believe me I'm going to tell it to you. 

I drove Dave and his boys to the Greenville airport a few nights ago. We left the house at 1:30am and I didn't get home till 6am, then I slept for an hour and went to treatment at 8am. Come to think of it, that may be why I didn't feel so great on Friday. But it felt good to be Better Enough to be able to do that. 

Dave and his 7th graders are in Costa Rica for the week. That means Hometeam and I are bachelorettes. Any ideas of what we should get into? We're up for anything that does not involve alcohol, dairy, staying up late, eating grains, being away from the bathtub for more than six hours, fruit, vigorous exercise or legumes. But beyond that, we're up for anything! Watch out world!   

Now- here are some of your bright moments. From brand new babies to corgis on SUP boards, I love seeing what we're all getting into these days. Thank you for sharing your color and adventure and letting me live vicariously just a little bit. Tag your Instagram photos #thewildercoast and join us!

Thank you @ielaraj, Christina (@nitrosister), @midbynorthwest,  Sharon (@wakeforart), Aimee (@ahain0013), Jaclyn (@jccline), Amanda (@amandabuck), and Ellie (@barefootmontana) and Mackenzie Nicole (@oncewildhere)!

And finally, here is what made my heart explode this week. My cousins Tracy and Todd adopted a little baby! Welcome to the world and to the family, Mr. Finn Coogan Plants!!

go hide and be brave

First, some business: If you're just joining us, would you like to read my Lyme story from the beginning? Catch up a bit by clicking here.

If you'd like to listen, I recorded an episode with The Dirbag Diaries.

 Click here to listen to The Miracle of Darkness. 

Now. On with the story.

thank you to Sarajane. Check your mailbox and enjoy your tiny treat at Trade and Lore!

I don't feel well enough today to write anything. I don't have any thoughts about it, either. So much of this disease is blank space. Staring up at the ceiling with nothing new to think about. Same four walls. Same bed. Same bathtub. Pain is frightening and certainly exhausting, but it's the blankness that I find to be the most agonizing. The world is streaming along outside the window, bright and humid, early summer, but time has stopped for me today. I have a feeling tomorrow is going to be better- it usually is these days. Still, it's been a year now that I've been sick. It does start to wear on you.

Dave took that photo of me the day that I was diagnosed. We had this idea that we were starting some new adventure, however macabre. We were curious, confident, ready to pull out all the stops. Grateful to have an answer, finally. My doctors suspect that I was infected nine years ago, and the funny thing is, I can read through this blog and see hints of it. Nearly a decade of troubling symptoms and misdiagnosis and finally we had an answer. I thought it was something worth posing for, brave little silhouette I was.

Later that night I called my sister in law in California. She heard my raspy little voice-


little voice, I was


- and she said, "Okay babe, from here it gets a little more complicated." But what does she know. She's only suffered from chronic lyme for years, and years.

A few weeks before my diagnosis, our friend Michael drove up the Carolina coast, checked himself into a motel and shot himself in the head. The night before his funeral was when I first noticed the rash behind my kneecaps. David called Erich into our room. I was lying in bed in my underwear. "Just turn over so Erich can see it," said Dave, because Erich's in medical school and he is our best friend, although Michael was his best friend. I rolled over onto my stomach, embarrassed, feeling like a little kid. Erich said it looked like poison ivy.

But the next day, as we were driving home from the funeral in a storm, we stopped at a gas station and in the bathroom's silvery, graffitied mirror I spotted the same red, blotchy pattern blooming up my neck and across my jaw. The skin was rough and raised, and it felt burned, like a hair drier held up to my face. That rash stayed with me for three months.

Then there was more, and more, and more, until we flew to New England and David propped me up on the papery examination table at an urgent care clinic, and two weeks later a chipper lab technician called and announced, with inexplicable triumph, "You have Lyme disease!" Sometimes, because of the timing of it, I joke with David and Erich that this was all Michael's fault. We resort to gallows humor. We say terrible things.

So began our big adventure, and I did sun salutations on a rock to show the world how feisty I was. The very next day our friend Taylor drowned. Erich called me in the morning, which is what he did the day Mike died, which is how I knew it was bad, otherwise he wouldn't call me in the morning. "Would you mind telling David," he asked, "I can't do it. I can't do it again."

So I call David at work and I tell him that Taylor drowned, this lovely young man who only knew how to kayak because David and Mike and Erich taught him for six years in a row at summer camp. David suggested that he go to Ecuador to paddle, because that's what David did when he was Taylor's age. Taylor went to Ecuador and drowned. I told David and he goes, "Does that mean he's dead?" I said Yes and David said Ok and hung up the phone.

Listen, I didn't know how to write any of this and I certainly didn't want to. But a few weeks ago my eyes turned yellow from the detoxification or babesia in the liver, and that sort of freaked my husband out. It's tricky to have an illness that is for the most part invisible, although I've lost 20 pounds which is a clue, but all in all David finds it reassuring that I look so normal. So when my eyes became a little jaundiced he didn't like that at all.

Here's the thing though, last week I wrote that some days I feel like this disease and what it's done to our life is not bearable. It is bearable but sometimes it feels like it isn't. I never wanted to write that before, because one does not want to invite pity. Pity makes a sad party worse. But I wrote it, finally, and the very next morning my eyes were white again.

I needed to get this out, the thing about Michael and Taylor. Nobody I know had a great autumn, we certainly didn't. Yes it does get a little more complicated. Perhaps you are safer as a silhouette with no features to discern. Hide. Although you know what they say about hiding. There's no place and you can't run now, either. Blame the bad joints. It is an adventure you were right about that. But you never could have anticipated the blankness that's settled between your ears, or the empty hours: not the sheer amount, nor how slowly they will pass.

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.