Monday, August 29, 2016

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 piƱata, 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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Thursday, August 25, 2016

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 

Tuesday, August 23, 2016

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.