I'm lying in my bed covered in insects. I try and brush them off with my hands but I can't get rid of them. They're the worst type of insect- everywhere at once, biting, stinging, invisible. I twist against the blue flowered sheets, trying to relieve the crawling. The twisting becomes twitching, my muscles spasming until my I'm nearly jerking off the bed, rattling around like that time I was driven to the put-in of the Grand Canyon in the back of a pickup, bouncing through the rutted roads of Polygamy Country in an ice storm.
But there is no adventure now, no story to tell later on and no river waiting for me at the end of the road. Only me and a disease that half of the medical world will not admit exists, even though the Borrelia antibody continues to show up positive in my blood, band after darkened band on the Western Blot Test.
David is lying next to me, although I wish he would leave so I can be spared the terrible look on his face. He strokes the hair around my face until the convulsions begin, then he draws his hands back, the two of us repulsed by whatever mechanisms is causing this grotesque misfiring of my neurons.
By now, one month after the official diagnosis, my nightstand is piled with books on treatment, on Lyme Disease, littered with tissues and pill bottles, mostly benzos: ativan, seroquil, klonopin, lorazapam, ambien. I look like an addict, like some overprescribed fiend whose future is nearly guaranteed to lie in the hands of some Xalisco-boy black tar heroin cell whose drivers will arrive at my doorstep spitting balloons out of their mouths.
Only I hardly ever take these prescriptions; each one of them is like a hand that pushes my head under water. Half of them don't work, so why bother. The others will relax my muscles but they'll also soften my brain, leave me feeling drugged up for days, lost in a heavy fog of fatigue and nausea. They are not worth it. Instead, when these episodes hit, we wait them out.
When the convulsions first began, we considered going to the hospital, but that was a brief notion. I'm a smart girl; I know you can't show up at the Emergency Department and explain how you feel bugs crawling all over you. They'll just waive you away or ship you off to psych. I don't blame them for that.
As a matter of fact, you can't show up at the Emergency Department and tell them you have Lyme, either, no matter what the symptom. They'll waive you away or they'll ship you off to psych. I do blame them for that.
Poor David. This isn't what you thought it would be like, is it, honey.
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David is costarring in a kayaking film and we're driving down to Charlotte to watch the premier.
The day before, we had dinner with some of David's old friends, one of whom has battled chronic Lyme since she was a teenager. Since I am about to begin treatment, she was trying to prepare us for what the first few weeks or months might look like, when the disease becomes temporarily and often violently worse before it gets better, a phenomenon known as the Jarisch-Herxheimer reaction.
David held my hand as we walk back to the car after dinner, his face set. He barely said a word that night, just threw his keys on the nightstand and fell into bed.
And now we're driving in silence on what should be a night filled with excitement, the sprawl of Catawba County streaming past in a blur of neon.
I know he won't leave me, but what I don't know is whether or not I can stay with him if I get worse, if I can pull him down with me. Is that what you do to someone you love?
I cannot take the silence in the car, and so I make a split second decision. I tell him that if I don't recover within the year, I am going to leave him. I will not burden you with such a choice, David, whether or not to stay with me. I will leave you.
He grips the steering wheel.
He says, "Thank you."
That night, my husband runs first descents in Labrador, Canada on a huge projector screen while a hundred beautiful young kayakers in trucker hats look on. Up in front of the crowd after the show, David explains that three days after returning from this trip was his wedding day. "This trip was my bachelor party," he says, and the crowd laughs. My friend Maeve tells me this later, because I miss the movie, I miss all of it. I'm locked in a stall in the bathroom, holding my head in my hands, sobbing.
Things are so bad. Things are very, very, very bad for us right now.
But they get better. I'm writing this in May. There is more to the story, but our life doesn't look like that any more.