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