The Bad Decision

A couple of months back I flew out to Nebraska on what turned out to be a rather ill-fated journey. It was a work trip, and I'd been really looking forward to writing about a different landscape and breaking out a few new adjectives (in case you're wondering, the Blue Ridge Mountains here in Asheville are: rippling, lush, panoramic, soaring, and, well- blue.) But it turns out I was in such crippling pain the whole time I was exploring the Great Plains I nearly lost my mind, just as the many mail-order pioneer brides that had come before me. 

That's right, friends, I still have fracking Lyme disease. I've gotten used to being in constant pain, as it's been well over a year now. The fact that we as humans are this adaptable is both a a terrible curse, and the only reason I haven't put myself into a forever sleep inside a snowbank. It's easier to exist in peace when you can't imagine what normal feels like any more, but there's also less motivation to try and get better. What's better? 

The trip to Nebraska was particularly haunting, as I'd just reached a milestone in my ubiquitous, longwinded, nebulous and, always, agonizingly expensive 'treatment.' We'd just managed to destroy all 13 species of mycoplasma I'd been suffering from- the stealthiest of all the stealth bacteria. Cause for celebration, because mycoplasma can cause such inconveniences as repeated miscarriage, but also tricky, as they create the biofilm where the Borrelia bacteria can live inside of you forever, cozy and protected from whatever onslaught of antibiotics you throw at them.

Not heard of biofilm? You've seen it. It's essentially a slime colony of bacteria, nature's lowest, basest, most repulsive level of life. Biofilm covers your teeth in the morning and sends you dashing out of bed to the toothbrush. It's the ring of discoloration that accumulates inside the toilet bowl, the one you'd rather die ignoring then face it and live. That's what I have clinging to my organs and vessels and bone. That's where the still-living-after-all-this-time pockets of Borrelia live like seniors in a Florida retirement community, totally insulated, playing bridge, enjoying Holiday potlucks. Swapping genetic information.  

At least, that's how things were until the day I successfully destroyed my 13 species of mycoplasma, the biofilm dissolved, a swarm of living lyme was released into my bloodstream, homeless and vengeful, and I blithely hopped on a plane to America's heartland, all excited about seeing the Oregon Trail in person.  

I'm catching us up a bit over a series of blog posts. The story continues soon. 

Bloggers, Instagrammers and Everyone with a Platform: Here is How We Return To Documenting Normal Life Again

Dear bloggers, instagrammers, and anyone with a social media profile,

Photo by Margaret Anderson 

Photo by Margaret Anderson 

Boy, we've had it rough since the election, haven't we? Is it just me, or does it feel like an awkward time to be in the business of writing about life- big, fun, beautiful, messy life?! Ever since the lucid, waking nightmare that was Tuesday night, getting back to business as usual (in my case, posts about mountains, Lyme Disease and my dog) feels tricky! Because a big, bad thing happened! So, with all of us in mind, I decided to break the ice and write a post about how in the world we can return to filtering and documenting our happy (sometimes!) and messy (so messy!) sometimes funny, mostly precious, warm and wonderful lives:

We don't. 

We can't get back to our normal lives because our lives are not normal any more. The appointment of an Alt Right leader as Whitehouse Chief Strategist is not normal. Having as a president-elect be the only world leader who claims that global warming is a hoax is not normal. Talk of forcing Muslim Americans to register, the same way that Jews were required to register during world war II Germany is not normal. 

And we as writers and photographers and bloggers, we cannot be the ones to normalize it. 

The administration that is going to lead our country starting January 21st have made it clear to us that they don't need to bother 'normalizing' their proposed policies by softening their language or mincing their words. They were elected on a platform or blatant fear-mongering, divisiveness, bigotry and hate speak. They are not appealing to us- they never have been. They realize that over half the country will disagree with them fundamentally. They're not depending on us to outright support them- they never needed our support. But they are depending on us to ignore them. To make it easy for them.

They're hoping that we just return to our lives and pretend this is not happening, or be too exhausted or scared to speak up, to get out of their way and shut up and return to what we find safe, and comfortable, and soothing. 

Here is exactly what that would look like:

Rape culture just claimed a major win, and while that bothers me, I never took a women's studies class, so I wouldn't be very articulate, or very profound, so I'm going to leave that up to the feminist scholars and instead, I'm going to write about the camping trip I took last week.

A wave of hate crimes is washing over this country, shattering our society, causing my friends and I to feel scared when we leave the house to pick up groceries. How would I ever address something like that on my blog, or in an instagram picture? Instead, I'm going to write a particularly cozy piece about the holidays so we can all enjoy a few moments of comfort, we certainly need it.

I do not agree with the idea that we should rip apart families by deporting millions of people, but what you have to understand is, I'm a brand-rep, and I've been told to keep it neutral, because it's the holidays, and we have to sell these T-shirts. Or baby slings. Or moccasins. Or whatever. 

My blog is small, and personal, and could not possibly have any sway on the way others think. So I get a pass on this one. 

Or, let's get real here-

I worked for years building up my platform,  my readers, and this is my job, so I'm not going to 'out' myself as having any persuasions or opinions that could lose me a portion of those followers.  

Alright, so what- are we all supposed to go back to school and study political science and become experts in the field? Are we supposed to ignore our own lives because they're just not important any more? If I post a picture of my cute dog, am I enabling conversion therapy for gay people?  

Nah. Listen. Our individual lives are just as important as they were a week ago. Our cute dogs are probably even more important than they've ever been before. (Shout out to my dog, Hometeam, for absorbing with her fur a thousand tears that I've cried this week.) It's just that we have to learn to do both. Let's dissolve the label we've assigned- this blog is about babies, this one's about climbing, crafts, economics, religion, tips on decluttering the household- No.

We are all writing, in our own way, about the our current world and how we make sense and find meaning in that world. Period. And, for the majority of Americans anyway, our current world just blew up. 

It might be awkward at first. Let it be awkward. "And that concludes my photo essay about my toddler's winter wardrobe, and by the way, the idea of dismantling our national parks really bums me out because I really want to take said toddler to Yosemite, wearing the little fur jacket you saw in photo #4." 

Maybe it's your tagline : thanks for reading, everyone, love you all, Melina (who fervently believes that abortion should be kept safe and legal.)

Do we have to be so vocal every damn post? Nah. Will I? Nah. Here and there. When an issue of particular relevance to us comes to the forefront. Maybe when we feel particularly lost and outraged (as I do, every time I learn something new about Steve Bannon and the Breitbart News Channel, whose Headlines have read "Birth Control Makes Women Unattractive and Crazy" and "Bill Kristol, Republican Spoiler, Renegade Jew." I don't know, just doesn't sit right with me.)  

Do we need to be addressing our outrage on every post and picture for the next four years? Of course not. We'd implode. We'd lose our minds, and what good would that do? But we have to be willing to try and strike a balance, even if it does feel awkward, or your hands get clammy, or you have to run to delete it the first three times. Courage accumulates gradually, like snow. 

Let's make it totally normal for regular people like you and me to have an opinion and to talk about it on our blogs and our instagram feeds. That should feel right. And while we're at it, let's have faith in the people who follow us that they won't instantly leave us, that they may actually be interested in what we have to say and appreciate the opportunity to engage with us on that deeper level.  

And finally, for those of you thinking: my blog is my own, and I can write or not write whatever I damn well want. Well, you're right. That's certainly what I shouted at the screen a few years ago when The Wilder Coast made its first appearance on the internet hate site Get Off My Internets. This is mine, haters, I can write whatever the hell I want to. 

As long as you're not being silent because you don't think you have any influence- you do.

As long as you are not backing down because you aren't an expert, or particularly well worded- you don't have to be.

Or because you're not unbiased- we're all biased. 

As long as you're not silent because you're scared of losing followers because what has happened and what is about to - potentially- happen, is a far cry more important than the number of people who look at your Instagram photos. I'm sorry. But you know it is. 

As long as you fully understand the ramifications of looking away because it's uncomfortable, or because it hasn't effected you personally yet. History has told what happens when we do that. 

I'm calling on you. 

Much Love,

(Who really, totally depends on affordable health care that does not discriminate against pre-existing conditions.)

(And, since we're doing taglines, is still, yes still, slowly, steadily, and with great purpose, moving through her thank you letter list!) 


What I should have been saying all along

Do not tell me not to get political. Do not write me to say that you read blogs to escape the news and the election. We cannot pretend that this isn't happening. For the last two months I've been too paralyzed with fear to write. Everything feels trivial, every post that I started felt completely useless, and so instead of writing about what matters I just stopped. Did I fear that a post like this would polarize me and this space (which it will), lose followers (which it will) and fill my inbox with nasty emails (which it will), or ever worse, the patronizing messages about how I need to keep it happy and cute and neutral, please, always? Was I really so afraid of that? Did I let that stop me? 

God help me. 

The fact that it took me this long to realize that it wasn't my paralyzing fear of what my country could be heading towards, or the despair that it's gotten THIS far with a hate-spewing madman like Trump that stopped me from writing, but my own fear about losing popularity- that shames me. I have a platform, regardless of size, and I kept quiet. I'm so ashamed. But I'm done being such a coward. 

If Trump wins, maybe I will be ok. I'm white, I was born here, I was raised upper middle class, I have resources, I live in a blue bubble in a red state. Then again, maybe I won't be ok. If Obamacare is repealed no insurance company would take me- not with my rap sheet of disease. What if I became pregnant, and got sick again, and there was a choice between my life and the pregnancy? What if Roe Vs. Wade was overturned, what would happen to me then? This is not an alarmist attitude. These are things that women everywhere have to think about, because it could happen to any of us, but particularly those of us with unpredictable illnesses. There more of us out there then you'd think. 

What if there was another unjustified, criminal war like the war in Iraq, and the economy tanked again, and both David and I lost our jobs? What if medicaid vanished, or social security? We both work very, very hard, but we live paycheck to paycheck, mostly because my disease has cost us everything. What if we lost our house?

But then again, we'll probably be ok. But what about the people in this country who are not as privileged as I am? Who already live in daily fear of being shamed or shot or picked on or left out or beat up? This is no comparison, but I drive around with a Hillary and Bernie bumper sticker on my car and I've been bullied, harassed, nearly driven off the road, I've considered taking those stickers off for my own safety but what about those people who can't peel off their ethnicity, religion or social status? If you're anti-Trump but you're choosing a protest, 3rd party vote- you may be just fine when he gets elected because of a privilege you may not even be aware of, but think about who will be effected, who will be punished by your choice. 

And what about our country itself? I LOVE this country, I have no doubt it's the most beautiful, giant piece of land in the world. I'm happy here. I'm proud of my country in so many way- not all way- but so many ways. My country does not build walls, or turn away those who are suffering, or ban entire sections of human, or label entire religions as terrorists, or give up on the poor or doom the sick- we're not perfect, we have a lot of work ahead of us but we're moving in the right direction. 

But enough with my liberal, bleeding heart. Forget about my opinion, just looks to the facts. Suddenly the far right seems to care about nothing except Immigration- the man's entire platform is built upon walls, xenophobia and fear mongering- but immigration is no more or less a 'problem' in this country than it's ever been before. Look at the facts

And stop saying it's a christian nation. The founding fathers (immigrants themselves) created this nation to be a place where anyone could freely and openly practice whatever religion they chose, the pilgrims themselves were fleeing from religious oppression, we all learned this in the 5th grade. "This government of the United States is not, in any sense, founded on the Christian religion." - John Adams. Freedom of religion means freedom of religion, period.

Look, where I live, I hear people talking. People are angry because their jobs went overseas and the American dream starts to feel pretty damn out of reach when your job gets exported. I'm not pretending to have experienced that myself, but do you want to know why I'm a full time freelancer who pays out of pocket for private insurance? Because I CAN'T GET A JOB. I've tried, for years, I couldn't even get a job at Trader Joes, and I have a college degree and I'm really good at interviews. There are not enough jobs and too many qualified applicants, period. The moment I stepped out of college the economy tanked. I'm not lazy and I'm making it work as a freelancer but NOT for want of trying to get a full time job. It has been agonizing. I get that. 

But Trump is not bringing those jobs back. Nothing is bringing those jobs back- free trade is happening, right or wrong, and it's not turning back. We have to look forward. We have to invest in renewable, American-made energy- can you fathom how many jobs are waiting for us there? In state likes mine. North Carolina could be the top state in the nation for off-shore wind power and yet lawmakers here are trying to ban the construction of wind turbines. There go the jobs. While we're at it, HB2 (unnecessary, nonsensical, fear-mongering, polarizing) has cost our state 400 million and counting. We really could have used that money.  

Obviously I could go on, because everything is at stake. I won't go on, but I'll say this: if Trump is elected, I'm not moving out of the country as goes the liberal rhetoric. I'm not giving up and turning over my country to the people who would choose to elect the man endorsed by the KKK. I'm staying here and I will work to mitigate the damage, I'll involve myself in my community in ways I should have done years ago, I'll look after my neighbors, I will fight to take back our country in four years. I'll do what I am capable of to honor all the millions of people, democrat and republican, who have worked to create and preserve the freedoms and liberty that we all (should) have today and to keep moving forward because it will never be time to rest.

Finally, I'm so happy that I'll have so many of you to work alongside with when that time comes, or- even more likely- to celebrate with when Hillary Clinton triumphs on November 8th. It shouldn't have taken me this long to say all of this. Speak out, friends. No platform is too small. Do not fear the fallout. Speak out. 


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.

Follow me on Instagram : @thewildercoast

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 

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.

Find us on Instagram @thewildercoast

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, 

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