I am Deborah’s voice. I am the archivist of her past and the puppeteer of her present. I am my sister’s keeper.
This is my life.
I swing Deborah’s legs off the bed to jumpstart the part of her brain that used to be driven by motivation. “Let’s go to the park.” It is only when she is standing that the muscles in her face awake and she smiles, locking eyes with mine, registering who I am. She grabs my hands and pulls them chest high so she can lean into me, pushing so hard I have to step back with one leg to keep us both from toppling. “Do you want to dance?” I ask, adding a little bounce as I redirect her weight into a side to side motion faintly reminiscent to Betty Boop’s wiggles.
I don’t understand this pushing game of hers, this ritual, and she no longer has the means to explain. Frontotemporal dementia has eaten the part of her brain that controls her words. FTD has taken another piece of my sister.
Laurie, the red-head who is always laughing, sticks her head in the door.
“You taking Miss Deb Deb out? I just changed her. Have a good one.” She disappears before I can even answer. When we come back, I’ll ask if Deborah needs more yogurt or jello from the store, sweet favorites to help trigger her swallowing mechanism during meals.
It is a two handkerchief day in the park, one to wipe Deborah’s nose and the other to catch drool. Some days we don’t need handkerchiefs at all, somedays we need four. I choose a walk that has no stairs to play tricks on Deborah’s depth perception. It is too cold to wait at the top until her brain allows her foot to venture the first step, a step that starts an automatic sequence that will carry her to the bottom of the flight. Six months ago we were walking down stairs with little more than a reminder to hold the railing with the hand that wasn’t clutching mine. Six years ago, Deborah and I ran up and down the stairs to the beach in Santa Monica to tone our gluts. Now the only steps Deborah can navigate are ones leading up.
In April 2009 when I cleaned out Deborah’s house, apologetically sorting treasures into piles that included Good Will and Trash, my sister–3000 miles away and blissfully ignorant to my treachery–played solitaire in an assisted living near my home. A zippered plastic bag, the thick, pliable kind that holds high-end blankets, caught my eye as I raised my face from the sad mounds of clothes. I stood on a build-in to reach it, stretching to slide it off the shelf. When it tumbled to the carpet, yellowed letters and notebooks spilled out of a split seam.
My sister’s memories. Letters from summer camp. Diaries from junior high. Notes from high school boyfriends. Letters from friends as isolated and trapped as Deborah felt during long summers between college semesters. Journals of dreams, break-ups, and resolutions.
A treasure trove that is now sorted into files sitting on the bed in the room where I write, a room where I examine the irony of fate. As Deborah’s archivist, I’m learning more about my sister, even as she is slipping away.