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 : thewildercoast@gmail.com 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.

Grasshopper

 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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Catch up on the Lyme Disease Story by clicking here

Here is how you can help, and how I will say thank you 

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