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Author Monica Wood On Her Developmentally Disabled Sister

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AUTHOR MONICA WOOD DISABLED FAMILY MEMBER
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By Monica Wood

Author Monica Wood sees more in her sister than developmental delays -- like intuition and wisdom, kindness and joy, and one hell of a sense of humor.

In the beginning, she was my big sister: three years older, a head taller, and -- I knew even then -- not like the rest of us. As I grew up, she became my little sister, whom I protected from mean boys, the neighbor's heartless crow, and the word "retard." She became literally littler, too: Today the fluffy top of her head barely grazes my shoulder, and I'm no giant myself.

When people ask about Betty's "mental age," I never know what to say. We're in our 50s now, shaped by the slings and arrows of fortune both outrageous and ordinary. The gap in our physical age broadens as her teeth loosen and her bones crumble; but the intellectual chasm that divides us, once so obvious and immutable, widens and narrows in startling ways. Betty can't write a grocery list or read a thermometer, but she can take the temperature of a room better than anyone I know. She can't reliably feed a cat or lock a door, but if you tell her a secret she'll keep it for a hundred years.

Betty calls her best friend, Laura, by her full name, a vaguely Victorian quirk that Laura mimics, because in certain tight circles Betty is the last word on etiquette and all else. Weekdays at 3 sharp, the phone rings.

"Hi, Betty Wood."

"Hi, Laura Ellis."

"What did you have for snack, Betty Wood?"

"Twinkie, Laura Ellis. You?"

"Twinkie, Betty Wood."

This is the After Work Call, following their shift at a sheltered workshop they refer to as "the shop." They've been at it for 30 years, pleasant hours sanding blocks, potting seedlings, or sorting secondhand clothes. Side by side they work, Laura with her telltale Down-syndrome silhouette: soft as a snow-muffled shrub, her round tongue resting on her lower lip like a winter berry. Betty, by contrast, is composed of points and angles, like a bird in a children's book: You could draw a decent likeness in a few sharp strokes. They chat and jabber from first bell to last, because the shop, like any workplace, teems with intrigue. Stolen boyfriends, hoarded candy, shifting alliances and dibs on lunch seats, the occasional dustup or medical crisis, the full operatic range of human striving.

Betty is the watcher, her pale eyes seeming to take in every contingency at once. If there's peace to be made, she will make it. If not, she's quick to step out of the way. "I'm a good lady," she tells whoever will listen, and I doubt that anyone to date has disagreed.

Because Betty thrives on routine, her week recycles the same highlight reel. Saturday morning infomercials, Tuesday lunch out, Thursday paycheck ($3); but the jewel in the crown is Friday night, when she beelines to Laura's house to laugh it up with Ron, Laura's adored and adorable old father. Because we lost our parents young, and then our beloved aunt and uncle, Betty has perfected the art of choosing surrogates. Ron -- whom Betty calls "Fella" -- makes their weekly lemon pie, a sacrosanct step-by-step that Betty hawkishly supervises, setting out utensils that her pushover host allows her to store according to her own unknowable logic. In a whip-quick sleight of hand, she plucks a measuring cup from a toy chest, and there ensues a great cloud of flour and much pan-rattling and conventional disaster -- the dog gulps up half the filling on a good day, all of it on a great one -- but somehow a pie results, a foamy treasure they can crow over.

Then Ron falls ill, and the trappings of piemaking give way to the trappings of something else. Pill bottles lining the counter. Apron strings wrapped twice around his ebbing waist. And finally no more pie, instead a hospital bed hogging the parlor, a sobering meringue of fluffed pillows and daisy-yellow sheets.

"Does she get it?" people ask. Which leaves me speechless.

Betty gets hospital bed. She gets soup by the thimbleful. She gets syringe in the fridge. She can spot, sooner than most, the signposts on that one-way road.

And she walks that road without fear. If you're lying on your deathbed, Betty's your gal. She won't shrink from the changed strange fact of you, from the rasp of your vanishing voice, from your ashy skin, your cracked fingernails, your morphine-addled visions. She will fail to register the blades of your cheekbones, the sweaty mess of your hair. She will see only you, the you beneath. She will place her sweet bird face into the filmy path of your breath and call you honey.

She did this with our mother. With our uncle. With our aunt. And now with Ron, who, despite Betty's tender ministrations, dies anyway.

Afterward we go to Laura's house, where the bed remains, empty and terrifying. "Can I get in it?" Betty asks. My other sisters and I exchange glances. Betty, predictable as the moon, can still muster the power to astonish us. Awestruck, we watch her climb over the metal sides of her surrogate father's bed and lie down where he lay, folding her skeletal hands one over the other. She stares at the ceiling. No one speaks. Eventually, she sits up, gets out, smooths the sheets, says nothing.

We do not ask. Whatever she has done, in our full view, is clearly private. Between her and Ron, perhaps. Or between her and God.

At times like this, I find in Betty's eyes a flame of wisdom, a burning intelligence, a flickering glimpse of a parallel self. She seems older in these moments, not just older than me, but older than everyone, older than her own mortal self. Divinity is the word that comes, even to this weak believer; then it's gone, and she's Betty again.

She and Laura share their grief in the only way available to them, to any of us: Keep going.

They resume their After Work Call, and also the 6:26, the Weather Report Call.

"What did the weatherman say, Betty Wood?" asks Laura, who has just watched exactly the same report on the same channel.

"Rain."

"Oh, no."

"Rain, Laura Ellis."

So it goes, until one day Laura arrives at the shop forgetting things, the first sign of a dementia that often afflicts Down-syndrome souls lucky enough to make it to 50. For Betty, a familiar rerun commences: appointments, pills, time measured out in "bad" days or "good."

On one of the last good days, the ladies and I take a sunny walk to a wooded path. It's still and fragrant here, the trees looming in silence, but the gals are loud talkers. Birds shy off from branches, unseen creatures flee into the brush. Suddenly Laura remembers her most reliable joke:

"Betty Wood lives in the woods."

I chuckle politely. They howl.

"Betty Wood lives in the woods. Betty Wood lives in the woods. Betty Wood lives in the woods."

After a few minutes of this, even Betty -- who will eagerly rewind a steak-knife commercial 50 times -- finds it tiresome. They tease each other a lot, these dear friends, but today Laura's "off" button is on the blink.

"Betty Wood lives in the woods."

My own inclination at this point is to find a hollow log in which to install myself until end-time, but instead I slip Betty some sisterly ammunition.

"Guess what?"

They stop. Turn to me in unison. "What?"

"Laura Ellis lives in a trellis."

The ladies find me incandescently hilarious in any case, but this -- this brilliant riposte -- oh, this takes the whole cake. They throw back their heads, haw-hawing like horses till they have to stop, take in some wheezing breaths, hang on to their quaking knees.

The rest of the walk -- why did I not see this coming? -- consists of a mind-numbing call and response:

"Laura Ellis lives in a trellis!"

"Betty Wood lives in the woods!"

In a few weeks' time, Laura Ellis lives not in a trellis but in a hospital bed moved back into the Ellis parlor. Betty is one of the last people Laura still knows. They hold hands. Do the woods-and-trellis joke. Cement the next day's weather forecast. Say goodbye.

Late that night, before Laura slips all the way under, she tells her mother, "Daddy's coming to get me. Can I go?"

"Yes," her mother says. "You can go."

"You won't cry?"

"I'll cry, but it's all right for you to go."

"It's going to be hard on the kids."

Her mother pauses, confused. "What kids?"

"Betty Wood."

She's right. It's hard on Betty Wood. Her grief is deep and old and full of memory. We make a tiny trellis out of sticks to hang on the Christmas tree. Ten times a day, Betty checks to make sure it's still there. We walk through the layering snow, her bony, mittened hand in mine. I say to her quietly, "Betty Wood lives in the woods."

She stops, shakes her bird-fluff head, looks into the unseeable distance, her smile wistful, and there it is again -- that glimpse of her what-if life, the brilliant "normal" life she might have lived.

But what of this life? What do I think I'm seeing, at these moments, that doesn't already exist? This is Betty: here, now, her eyes filled with sympathy and understanding. And yes, a kind of brilliance. The intellectual chasm between us divides, and I'm on the wrong side. From here, she looks like the kindly, durable person she has always been: the big sister shoring up in sorrow, charging ahead to the unknown and unknowable, showing her little sister how it's done.

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