I’m a bit nervous, but mostly excited as I drive to pick up my youngest sister. We are having a Sisters’ Day, just the two of us. We’ll have lunch at a Chinese buffet, Sue’s favorite place to eat, stop by to visit our mother, do a bit of shopping. I called a few days ago to make the arrangements, but I’m not sure Sue is going to like all of our plans.
I get lost and have to call for directions, so they’re waiting for me. I greet the receptionist and get further directions. Sue pops out of the break room, spots me.
“Jean! She’s here! My sister Jean here!”
I try to get a hug hello, but she’s off to gather her things, to say goodbye to her friends. I have heard she has a special friend, Ronny, whom she really likes, so I’m not surprised to be introduced to him.
“Jean, this is Ronny. Ronny my friend. Right Ronny?” Ronny agrees. We exchange greetings.
It takes a few minutes for Sue to be ready. She has to be sure she has everything. As soon as we’re in the van, she turns to me.
“I hate workshop!”
“I know.” How perfect, she’s given me the opening I need. “That’s why were going to look at a new one, remember?”
“I hungry, Jean. Chinese food?”
“Yes,” I reply. “But first we’ll go to the new workshop, ok? Me and you. Then we’ll go to get Chinese food. We can get some for Mum, too and bring it to her. Okay? First, the new workshop.”
“No, Jean. I hungry.”
“Well, you have your lunch with you, why don’t you have some of that?” I say, pointing to her lunchbox.
“No. Chinese food, please, Jean?”
I start the car, pull out into traffic.
“Sue, we need to see the new workshop first. It’s called a Day Hab. They have lots of fun things to do there. You don’t have to work. We’re just going to check it out, ok?”
“Sure. I bet they have coffee at the Day Hab. We’ll get some there.”
“No. Chinese food.”
I change the subject. I get lost.
“What are you doing, Jean Daley?” Sue asks with some exasperation, as I get off the highway, turn around and head back the way we came.
“I messed up. It’s ok now”
Sue doesn’t like getting lost. She’s getting agitated. I give her a John Mayer CD to put in.
It’s December in New England. About 45 degrees, and pouring rain. Slashing, sluicing, wind-blown, cat-and-dog type rain.
The Day Hab is hidden in an industrial park. We drive around for ten full minutes looking for the right building. I’ve mentioned that Sue doesn’t like getting lost?
Finally, I spot it. Large windows, a man sitting just inside, watching the comings and goings.
“I wait in car.”
My husband and I moved 100 miles away shortly after we married to a piece of land in the country. I drove nearly 3 hours in rush hour traffic to pick Sue up for this visit. My heart sinks.
“Ok,” I say, to keep the peace. “Do you want to come in for a cup of coffee? I’m going in to say hello.”
“No.” Her tone says there is no room for discussion. “Coffee at Chinese food. I wait in car, Jean.”
“Okay. I’ll see you in a bit.” The rain soaks through my shoes, my normally frizzy hair frizzes to the max.
The receptionist has her back to me. I wait for her to turn. When she does I notice a terrifying resemblance to the character Delores Claiborne from the Steven King film. I introduce myself, explain whom I am there to see. Delores points me in the right direction.
I introduce myself again, being careful to keep my van within my sight.
“Got any coffee?” I ask. Then, thinking that I sounded rude, I explain why. A woman grabs a jar of instant and hurries off.
The passenger side door on the van swings open. Sue gets out. I hurry out to meet her, show her which door to use.
“I need bathroom, Jean.”
Sure, I say, come on in.
Sue wants to use the bathroom at the Chinese restaurant. Rain tickles my scalp and runs into my eyes, my socks are damp. After discussing the pros and cons of the using the bathroom here or waiting to use the one at the Chinese restaurant, Sue agrees to use the one here. As soon as she does, she starts repeating “Pads. Ka-ka. I wet my pants?” She points to her ankle. I’m trying to quickly change the subject; this is not the first impression I was hoping she’d make.
She brushes by our tour guide, refuses to be introduced. We point her to the bathroom. She comes out in a rush, sees us waiting, turns the other way and bolts through a door marked “Authorized Personnel Only”. I follow, calling to her, trying to get her to stop. Finally, I convince her to come back with me. She shoots past our host and into an office.
Sarah calls, “Oh, you can’t go in there. Someone is using that office.”
Like Susan cares. I follow again. Cajole. Bribe. Offer her a dollar. Think what you want, but if a dollar is buying me a few minutes of peace, I’m paying. This is not a child I’m raising, but my 33-year-old sister. At the residence, they call these bribes ‘reinforcers’. Sue doesn’t bite. Sarah tells us that the next office is empty, available. Luckily, the man who is occupying this one doesn’t seem to be bothered by our presence.
Sue decides to move to the next office. It’s totally empty, even of furniture. We stand at the doorway, while Sue goes in and faces a wall, takes a moment to herself.
“I wait in car.”
“Jean,” says Delores Claiborne, “will Susan be coming here?”
I explain that we’re not sure, yet.
“Jean,” Delores says, “why is Susan outside?”
She’s nervous, I explain.
“Jean,” I am starting to hate the sound of own name, “where is Susan’s workshop now?”
Susan returns with a soda that needs to be opened. She doesn’t exactly return, but stands in the pouring rain, holding out the can in my general direction.
Back out into the deluge. My wool blazer is damp all the way through. Water trickles down the back of my neck. I convince Sue to come back inside. Sarah quickly proceeds with the tour, luring Sue along to where the others are having their daily dance. Music blares, people bop and sway.
Susan loves dancing! She begins to drift closer. Suddenly, she screams, “Tammy! Tammy! My friend! Jean, my friend Tammy!” She points to a very thin woman wearing a pink sweat suit and a Special Olympics medal.
Susan suddenly panics and runs back to the car.
But dancing! She comes back, hangs up her dripping windbreaker. Sue dances.
For the next ½ hour, we look around. Sue checks out all the bathrooms, long an obsession with her, even the men’s. She opens every door, sees what’s behind it. I always wonder if she’s mapping out future escape routes.
Sue has spent a lot of time trying to escape. When she was younger, she would often disappear when no one was looking. My mother would only need to shut the bathroom door, and Sue would be gone. All of my brothers and sisters would split up and chase after her. But Sue never caught a rule that most of us understood at a young age. Knocking on a door and waiting to be invited in simply isn’t on her radar screen. Whether she had ever met the residents or not, Sue felt welcome. So, in through the front door she’d go, uninvited. Since there were no guarantees that she’d come back out on her own, one of us would chase after her. I saw the inside of so many of our neighbors houses that way. Mostly in through the front door, out the back, through the yard, across the next yard, maybe in through their backdoor and out the front. And their shoes. If Sue wasn’t coming back out, it was because she’d found someone’s closet full of shoes and would be happily making herself at home, trying them on. She won medals at Special Olympics for her running speed and was always the fastest one in our house.
We check out a wall of photographs and Delores points out one of herself picking apples. The Day Hab uses dancing as exercise in disguise. Apple picking combines gross motor and fine motor. On Thursdays, they cook their own lunch, using more fine motor skills, living skills, nutrition class. There are frequent field trips, bingo games, arts and crafts, and time to socialize, or just relax. There is a nurse on duty at all times.
This time, when Sue goes to the car, I join her.
“Chinese food, Jean?”
“Jean?” I will be so glad to go home and hear the chorus of “Mum, Mum, Mum” after this.
“I ride in white van. I go workshop white van.”
“I go Ronny, Mary Ann. White van.”
“I go now?” she pleads.
“No. Tomorrow. Tomorrow you’ll go in the white van and back to your workshop.” I steal a quick glance. She’s rigid, so tense she looks as if she’ll snap in half.
“I ride Ronny and Mary Ann? I ride white van?”
“Yup. Someday, would you like to go back to the Day Hab?”
“I ride white van. I ride Ronny and Mary Ann.”
“Yes. Tomorrow. But Sue, some other day, next week,” which is the distant future to Sue, “would you like to go to the Day Hab again to visit Tammy? You could dance.”
“Yeah. Tammy? I dance Tammy?”
“Yeah! That’ll be fun, huh?”
“Yeah, Sue?” I know. In my heart, I already know.
“I ride white van? I ride…”
Many times over the course of the day, this conversation, this pleading for routine, is repeated. Many, many times. I explain that there would be another van, different friends to ride with, but she needs specifics, names, the color of the van, the name of the driver. I promise to find out for her.
As soon as we arrive at the Chinese restaurant, without waiting to be seated, Susan grabs a plate. She heads straight for the crayfish (or are they crawfish?) and begins piling them on her plate. We’ve done this before. She thinks they’re tiny lobsters.
Did you ever see Splash, the movie with Darryl Hannah as a mermaid who’s temporarily human? Tom Hanks takes her to dinner at a fancy restaurant.
They order lobsters.
Apparently, mermaids eat their lobsters, shell and all.
That’s how Sue eats the crawfish. It’s painful to watch. I try to redirect her, show her something else before she fills her plate with them. Her body language warns a storm is brewing, but she moves on, placing a giant spoonful of anything that interests her in the middle of her plate, one on top of the other.
I grab a bowl and scoop out one ladleful of Hot and Sour Soup. When I turn back, maybe 10 seconds later, Sue’s plate is heaped; food threatens to slide off and her plate is precariously tipped. I reach out a hand to steady her plate.
“Jeeeean!” she warns.
She adds a few more spoonfuls of eggplant and tofu to the heap. I wonder if she’s ever had tofu before. She tells me it’s fish. The plate now weighs more than her somewhat weaker left arm can support. I insist on taking her plate, snatching it just as it starts to slip from her grasp. She’s angry, but hungry enough to follow me back to our table.
Her coffee, which she has asked for no less than 50 times in the last 2 hours, is at her place. She pushes it aside. I cajole her into coming to the ladies room with me, something I would have preferred to do before we fixed our plates.
Back at the table, I know to eat quickly. I suck back the soup, eat my dumplings, forget to see if I can taste the crab in the Crab Rangoon. Still, Sue clears the mountain of food in front of her well before I’m done. I’d like more food. I remind her of her coffee. She takes two sips, sighs, and pronounces herself done.
She pushes her plate to the edge of the table and looks around.
“What do you want, Sue?”
“No.” Her eyes are seeking out something; I’d prefer some warning of what’s coming.
She’s spots the waitress.
“Chinese girl!” she calls loudly and with authority, pointing to her plate. “Chinese girl! Here.” I wish I could crawl under the table.
I flash back to a dinner in a Chinese restaurant with Sue and our parents and siblings years ago. Sue was 8 or 9, maybe even older. She decided that she wanted to be under the table. My parents wanted her to sit at the table. An argument ensued. People turned to see what the commotion was. Sue began to scream and throw a fit. My father, having had a few too many, began throwing his own fit. A memorable meal. I apologize to the waitress, and she smiles understandingly.
I lean across to Sue and say, “Don’t say that. It’s not nice. She’s a waitress. If you need something, you call her ‘waitress’. And you say please.”
“Oh.” she says, as if we haven’t had this particular conversation a dozen times before. She shrugs. “Sorry.”
With more speed and less thought than I’d have liked, I fill a takeout container for my mother, who lives 5 minutes away.
My mother’s building is having its annual holiday sale. Any of the three buildings 900 elderly residents who wish to sell their crafts or some kick-knacks set up a table along with outside crafters. Parking is at a premium and it’s still raining hard. We have to park a good distance away and run. There’s a river of excess rainwater running through the parking lot. I try to point it out to Sue, but she thinks I’m pestering her and refuses to listen. The water covers her right foot to the mid-calf. She’s too surprised to stop and her left foot joins her right.
“I wet my pants, Jean.”
“No, you got your pants wet, but you didn’t wet them. Its okay, come on.”
There are hundreds of tables set up.
Susan bolts straight ahead to the reception desk. On top of it is a mug. Susan tells the woman she wants the mug, the very first thing she’s laid eyes on. She proffers her dollar and tries to take the mug.
The woman is not giving up so easily. She wants, she says, two dollars for the mug. It’s musical.
I whip out a dollar, a bargain to get Sue to come with me. Or it would have been if it had worked.
Susan takes the mug and heads to the table selling baked goods and coffee. She wants. She strikes up conversations with people who check their hearing aids, wondering why their having trouble-making sense of what she’s talking about.
In desperation, I mention that Mum has a dollar for her. We move to the elevator.
Immediately following saying hello to our mother, Susan retreats to the bathroom.
“Pads, Jean?” she yells from the bathroom. “C’mere, Jean, pleeeassse? Ka-ka. My pants. Jean? C’mere, Jean Daley.”
I do not want to go. I really, really do not want to open the door. But I know I have to.
About 6 inches.
“Jean,” she says, handing me her jeans, “These gross. I need clean ones.”
I cringe. I peek. Clean. I sigh. Sue points to an old stain. I try to explain the difference between a stain and something being dirty. She’s points out that they’re wet from the puddle she stepped in. I try explaining that we don’t have other pants with us. Finally, I leave to wait her out.
Now my mother is growing nervous.
“Can you tell her to come out of there? Rose will be here soon and she’ll need to get in there to clean.” Rose is my mothers’ homemaker. My mother fell this summer and broke her back. I’m wondering if she broke her good sense, too. It’s not like she doesn’t know how this goes.
“Yeah, Ma.” I say with less respect than one should bestow on their 81 year-old mother. “I’ll tell her. That’ll work.”
Before my mother can take it further, Susan emerges.
“I wet my pants,” she announces to my mother.
“No, you didn’t. You stepped in a puddle. You’re pants got wet. You didn’t wet your pants,” I tell her.
My mother remembers a bag my aunt dropped off for me that morning. It’s full of warm, white socks. I convince Sue to don dry socks, and she ties her shoes when she’s through. She amazes me.
We stay only a short time. Once Sue knows the agenda, she likes to keep moving.
On the elevator, I step out of the way to let someone by and we get separated. Sue is now manning the elevator buttons. I try to coach her from behind 2 or 3 women wielding canes. At one stop an attractively dressed woman in a red coat and hat moves a bit slower than Sue feels is absolutely necessary.
“Hurry up! Get on! You walkin’ slow. Hurry, lady, now!”
“Susan!” I exclaim. “That’s not nice.” Then to the woman, “I’m sorry.”
The woman gives Sue a summing-up look and then throws me a slow smile.
Off the elevator, Sue runs again to see what else she can buy. I bribe her with promises of nail polish. She throws a penny in the fountain, and we leave. She barely misses stepping in the run-off again.
Wal-mart is close by. The first thing Sue sees are disposable cameras. She asks me to buy her one. I counter with nail polish and 2 DVD’s to go with the DVD player she’s getting for Christmas. I win.
Unfortunately, the DVD’s are near the cell phones. Susan squeals with delight when she sees them.
“Oh, please, Jean Daley? I need a tone phone!”
I explain that I don’t own a ‘tone’ phone. She persists. We pick out nail polish and remover. I tell her I need dog food.
“I hate dogs,” she says.
She’s at my elbow as I grab 3 cans, turn and head back to the main aisle. I turn. Sue’s gone.
I hurry to the aisle to the right, no sign of her. I run to the left, nothing. I run back to the right, four aisles, six. Still no sign of her. I grab a sales woman.
“Please, I need help. You know that Code Adam thing you do? I need you to do it. I’ve lost my sister. She’s this tall.” I hold my hand chest high. I try to remember what’s she’s wearing and draw a blank.
The sales woman gives me a look. I know she’s thinking I can’t have a sister that young. She doesn’t move.
“She’s severely retarded.”
The woman hurries away and I stop three more saleswomen and try to enlist their help. Unable to give a description, I go with, “This tall. She’s severely retarded. You’ll know.” To me, at that moment in time, that pretty much covers it.
I finally find her at the end of the store, in the toy department, holding a Barbie cell phone. Two of the salespeople are still working as we walk back.
“You didn’t give me a description. I didn’t know what she looked like,” one says. I can see her point, but the description I did give warranted some attention as far as I’m concerned.
Sue wants a soda and I need veggies for a salad. We stop at the grocery store. It takes much longer to convince Sue that we are going to the produce section than it does for me to grab a cucumber and a bag of salad.
“Go home, Jean?” Sue’s tired, nervous. I look at the time. Her house is about 20 minutes away, but the staff won’t there for another 45 minutes. Sue doesn’t carry a key.
Sue always carries a purse. She can cram more stuff into a small purse than anyone I have ever met. No matter what the occasion, you can count on Sue having a movie in there. I pull into a parking lot and put the movie in the VCR in back. Sue watches the video while I drive and stall for time.
I have disrupted her routine today, wrinkled her day so that she’s had a hard time finding the anchors, the touchstones that keep her sane, solid, safe.
When she was younger, we could spend a day or even two together and I was the touchstone. Just being with me was enough to let her know she was safe. But then, too many things changed. Our father died. Sue became violent and angry. My mother had to sell the house. Sue moved to an adult residence after some bouncing around looking for a good fit. She lost her balance, in a sense. And now her routine gives it back. Without it, she’s adrift, lost. I am not enough.
Thankfully, one of the staff is a bit early and at the house when we get there. Sue jumps out of the car, runs up the steps. She’s home, I’ve been dismissed. I start carrying in her things, the DVD player, her purchases, lunchbox, etc. Once my arms are full, Sue runs back out. She needs to gather up her purse, her soda. It’s pouring rain and she’s in no hurry. I try to wait patiently, but it’s hard, and I can’t leave her outside alone.
I put away Sues’ things, try to set up the new electronics. Sue is mostly telling the staff about her day, sharing her candy with her roommates. I ask for a hug goodbye, but I have to follow her around to get one, to let her know I’m leaving.
Back in the car, I’m exhausted, facing a long ride home in a damp turtleneck and sweater, my shoes soggy.
The car is too quiet as I pull out into rush hour traffic.
How can silence be so jarring? How can I miss someone so soon and still feel such a wave of relief at being alone?
So, I said it was looonnnng. If anyone has made it this far, I could use a few bits of info. I'll post my questions in the feedback thread.