Saturday, August 6, 2016

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.


Anonymous said...

You are very good at creating a beautiful world around yourself and those your love regardless of challenge!

Ashley said...

I think you may have a title here for a memoir!
The very act of putting up food is an act of hope, of preservation, and anticipation of a future. That sounds pretty super to me. Big ❤️.

Susan Spaulding said...

Hot damn, Melina, now yer cookin! June sounds like good people, and I absolutely love it that you said you're "putting up food." Takes me back 45 years to Iowa in August--green, sticky afternoons before the thunderstorms, skibbling off to the storm cellar to get my grandma a jar of the peaches she'd put up last summer. She gardened (if you can't get it to grow in Iowa soil, you didn't plant it) and stored produce down there in the cool. Potatoes, apples, winter squash, jars of saurkraut, pickles, green beans, pears, plums, peaches, apricots, pickled beets and eggs, and jam. Acres of jam. She grew onions and garlic but didn't eat them. She used them for medicinal purposes only. Short-tempered women in the steaming hot kitchen, dipping jars of food in and out of boiling water, they started cooking the evening meal--which included fresh cherry pie AND biscuits made from scratch--by 3:30 p.m., but didn't stop the canning process until everything was put up and the kitchen cleaned and ready for morning. Men stomped through the back screen door, tracked field dirt across the linoleum, and hollered, "When's supper, mama?" They lived 2 blocks down from the Hy-Vee, but they were farmers. Putting up food. Yes, indeedy.

Sharon Smith said...

Some of my happiest memories when I was a teenager, was on my grandparents farm in Johnston County, NC. My grandmother had a HUGE garden that would feed them through the winter. They had a big freezer bought with my grandfather 's good credit...they were very poor in the beginning. Going out on a hot summer morn was not fun. Picking green beans, butter beans, tomatoes, squash, garden peas, etc. my favorite part was ladies in the community would come over and help snap green beans and shell butter beans. Shuck corn. I loved listening to all their hard and good life stories of being poor farmers with families to feed and cloth.

Shilpa said...

Hi there -
So, I'm a fellow Ashe-villian but am getting ready to move to the PNW in a month or so. I used to be really into preserving and canning, but didn't have a garden this year, and have no clue what my living situation will be in Vancouver. All this to say, I have a canning set up that I will not be taking with me, and would you like to have it?

It's just one of those gigantic blue speckled pots with a rack for jars inside. When I first got it, it was an impulse buy, I'd been canning for years in my chili pot, but thought it would be fun to up my game. I'd love for it to go to a good home, it's been a great companion through many a hot and sticky August. I couldn't find an email with the blog, so if you see this and would like it, let me know and let's figure out how to get it to you.


Melina said...

@Shilpa, YES oh my gosh YES YES YES!!!!

my email is!!

This is AWESOME!!