On certain mornings I still wake up locked in sleep paralysis. It's a sluggish, weird thing, not the greatest omen for the day. Once my mind is awake, I begin the uncomfortable process of reconnecting it to my body, beginning with my eyelids. I open them heavily, they fall shut. I do it again, keeping my eyes open for a few seconds longer each time.
David helps to unlock me. He brings me coffee in bed every morning at 7am. About half of the time I'm asleep in our bed. The other half of the time I'm passed out in my own room, electrodes from the TENS unit still stuck to my shoulders, the oil infuser blowing lavender steam, fan blasting, sound machine set to Tropical Summer Night. David wades carefully into the room, switching off the various machines as he makes his way towards the bed.
Dressed for work, he props me up, leans over and tilts the cup of coffee into my open mouth.
Recently, my friend Aimee sent me a mug that's tapered at the top, so it's easier for him to feed me (drink me?) without spilling. David and I have gotten used to this bizarre ritual, the way you eventually get used to most things. He calls it, 'First sip.'
"Are you ready for first sip?" he'll ask as he enters the room, switching off the sounds of Jungle Night. After the first sip, I'm ready to drink on my own.
David's sweet but dry humor has gotten us through a boatload of misery this past year as we try and make our way through the murky landscape of Lyme Disease. One afternoon I tried medical marijuana- a god sent for many, but it sent me into convulsions. Lying on the couch watching television, I twitched like a rag doll, pressing my palms against my eyes. "Well," David remarked calmly from his chair. "I guess that didn't work."
My favorite is a young nurse named Becky, who has straight dark hair and is constantly chewing gum. She's sarcastic and witty and fun. When I first started going to the center a few months ago, I told her I felt like I was dying. (Melodramatic, certainly- lying on the table, whispering, a wide-eyed stare- but what can I say, other than those early days were marked by pure terror.)
"Oh, you aren't dying," she responded in the heaviest North Carolina accent I have ever heard. "But you are real messed up."
That's what I like to tell people now when they ask how I'm doing. "I'm not dying. But I am real messed up."