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,