That Went Well: Adventures in Caring for My Sister

That Went Well
 

Adventures in Caring for My Sister

Terrell Harris Dougan
 

 
 

To all caring siblings of people
with disabilities everywhere.

Oh, Honey.
I know. I’ve been there. I am there now.
I will always be here and it’s not going away.
I wake up every day, as you do, asking,
“What fresh hell is
this?

Call me up and come over
and we’ll have a nice cup of tea together.
Well of
course
I’ll lace it with something stronger.
We darn well deserve it.

Contents
 

1.
Lightning Strikes Twice

2.
I Try to Confess

3.
We Find Out the Truth

4.
Childhood’s End

5.
College and Onward

6.
Tilting at Windmills

7.
The Spies Who Loved Community

8.
Eviction Is Such an Ugly Word

9.
Shall We Begin—Again?

10.
Travels with Mom

11.
Losses and Tantrums (Mine)

12.
Trying to Get a Life

13.
Family Struggling Please Help

14.
Adventures in Community Life

15.
Confessions of a Codependent

16.
Bowling with Irene

17.
Travels with Irene

18.
Friends, Labels, and the Future

19.
Letter to Irene

20.
With a Big Surprise Ending

 

I
t’s Christmastime, and in a bright supermarket, with “Joy to the World” spilling out of the overhead speaker, I am ducking a flying packaged chicken that is sailing past my head, thrown at me by my furious sister. I know the reason, of course. She doesn’t want the vegetables I have put in the cart; she wants chocolate bars and a case of Coke for dinner.

As the chicken flies by, it stops the meat department cold. People are staring at us both, two middle-aged women, one throwing and one ducking the chicken. I want to say to them, Listen: she is mentally disabled, see? She can’t read or write. She’s diabetic, and can’t have candy and Coke. We’re doing the best we can here. If you’ll just put down your meat for a minute, I’ll tell you all about it….

Lightning Strikes Twice
 

March 1946

 

I
t’s late afternoon. The clouds are rolling in, swift and dark, and my grandmother, Bammy, and I hear the rumble of thunder. The willow tree branches sway as the wind kicks up. “Oh my, look at that,” Bammy says, wrapping her arms around me as lightning flashes across the sky. It’s a blustery, scary, stormy day: just the way we like it, especially since we’re cuddled up safe and warm in the lamplight, with a coal fire burning in the fireplace. I am thinking of the pickled pigs’ feet we’ll eat while listening to our favorite radio program,
Mr. Keene, Tracer of Lost Persons.
Now the thunder claps so loudly it makes us jump. We both love the light show.

With one more deafening crack, thunder and lightning hit simultaneously, and our willow tree is smoking. Bammy screams and grabs me off the couch and into the middle of the living room. She’s afraid the tree will fall through the window on us.
But it doesn’t. It has split right down the middle, and the other half has fallen away from the house, toward the street.

Bammy runs to the telephone in the hall to call my dad. “Oh, Dick! The worst thing—yes, we’re all right, but the willow tree just got struck by lightning and split right in two! And our lights all went off! Yes! Oh good, we’ll see you in a few minutes.”

When my father got home, the storm had died down. He stood there regarding the tree for a long time, his arms folded over his chest. Coming inside, he took off his coat and tie, put on blue jeans and a work shirt, and drove our 1945 Packard to the hardware store. He came back with a jar of black, tarlike goop to paint onto the trunk of the tree. “We’re going to see if this will heal its wound and let it live and grow. It’s still a pretty tree, even like this.”

My little sister Irene had been born that morning, and Mom was still in the hospital. Since our electricity was out, we couldn’t hear
Mr. Keene, Tracer of Lost Persons
, and we were sad about that. We ate our pickled pigs’ feet by candlelight, which was okay, because we liked them cold just as well.

I had no idea then how much Irene’s birth would change all our lives, irrevocably and forever.

The next day I sat on the couch and watched the tree people chop up the stricken half of the willow and haul it away. Bammy was on the phone with one of her friends: “Yes, the baby’s here! Oh, Afton was in labor for hours. The doctor was mean to her, and her with her arthritis…. She had a terrible time. He made her put her feet in those stirrups when she couldn’t bend her knees! Told her she was being a bad patient. I could kill that man! Oh yes, the baby’s beautiful. They named her after me, you know. Yes! Irene! Well, tickled pink, of course.”

When Mom came home with my new baby sister, I couldn’t wait to hold Irene. She was beautiful and dainty, and fit in my arms like she belonged there. I loved her instantly, and of course so did Bammy, who crooned lullabies to her the way she had to me.

Mom and Dad slept in twin beds in a bedroom wallpapered in small pink roses and blue ribbons. Cuddling with Mom in that bed was my favorite thing to do. I loved her hands holding my arms. I thought her hands were beautiful: always perfectly manicured, the fingers splaying out sideways from hugely swollen knuckles. I wondered why mine didn’t do that, and why Dad’s and Bam’s weren’t as pretty as Mom’s.

Mom would come home from a dinner party and sit on my bed if I was still awake. I loved the smell of her perfumes: Fleur de Rocaille or Joy. She would stroke my hair and tell me about the party. I always loved hearing about it until she came to the part where someone squeezed her swollen, arthritic hand. “Oh, it hurt so much! They don’t know how my hands hurt, and they take them and squeeze them. It almost makes me
cry,
it hurts so much.”

Then she would kiss me and go to her bedroom, leaving me furious at the person who squeezed my mother’s hand and hurt her. She was so delicate. It made me want to protect her, and I was too little to do that.

But now she was home with Irene, who slept in a bassinet by Mom’s bed so she could nurse her in the night. I wished I could crawl in with Mom and Irene so I would be safe, and so I could see the roses and ribbons on the wallpaper in the morning.

One night I waited until everyone had gone to bed, then crept into Bammy’s bedroom next door to mine. She had just tuned in to her other favorite radio show,
True Detective,
“where real crimes
are solved by real detectives, with real criminals brought to justice.” She was rubbing cream on her heels.

“Bammy, have you noticed about Irene, that her eyes are crossed?”

“Yes, honey, I noticed.”

“What’s wrong, do you think?”

She put her jar of cream down and rubbed the rest into her hands. She frowned a little, thinking what to say, and then brightened. “Some babies get born that way and it takes a few months for the eyes to straighten out, that’s all. Their muscles are just weak.”

Bammy was my go-to person whenever I had questions. Mom didn’t give answers as fun and colorful as Bammy’s. While Mom had been pregnant, I asked how long it takes for a baby to get born. It was clear to me that you got married first and then you ordered one like you ordered up your newspaper delivery. Bammy thought a few moments and then said, “The first baby can come anytime after you’re married. After that, it takes nine months.”

Here are more facts she taught me:

 
  1. If you stay in the bathtub too long and your fingers wrinkle up, it means you are going to dissolve and you have to get out immediately.
  2. If you put your nightgown on inside out, you have to go to bed in it that way. If you change it, it’s very bad luck, and when you die, you’ll have to pick every stitch out of that nightgown with your teeth while you’re in heaven. Bammy’s mother, who was born in England in 1849, told her that. Everyone in her mom’s village knew that rule for a fact.
  3. Dreams go by opposites. If you dream about a death, it means a new baby is coming. And vice versa.
 

Bammy was my other mother, really, and my friend and my protector. She wasn’t about to alarm us both with Irene’s crossed eyes.

In the coming months, Irene’s eyes weren’t the only thing that seemed strange to me. Most days, Irene would lie quietly in her playpen, rotating her wrist round and round, watching her hand with fascination. I had never seen a baby do this before. Mrs. Murphy, across the field behind us, had just had her third baby, and none of them had ever acted that way. Besides, the other kids had learned to sit up by themselves faster than Irene did. Once she finally did sit up, Irene kept doing that thing with her hand. I could never figure it out. I mean, it seemed to me, once you’ve seen your hand, you’ve seen it. But to Irene, it was endlessly fascinating.

She was slow to do everything. When she finally walked at a year and a half, Tommy Murphy, who was playing with us in our sandpile, said, “Hey, what’s wrong with your sister? How come it took her so long to walk?”

I looked at Tommy for a minute, trying to decide how to reply. “Nothing. She’s just a little slow, that’s all.” I had heard my parents and Bammy say that over and over, looking at each other, hoping.

I hated the idea that Tommy noticed that there was something wrong with Irene, because the Murphys were everything I wanted our family to be: big, informal, and gloriously chaotic. I would go through the backyard from our Cape Cod home, past our vegetable garden, past the chicken coop and the sandpile
and the swings, through the picket fence and the field, and into the Murphys’ back lawn, where Mary Frances, Tommy, Grace Ann, and Margaret were playing. Mrs. Murphy was never in the yard. She always seemed to be pregnant and in the kitchen of their tiny, packed house, cooking and mumbling “Hail, Mary, full of grace,” to herself, a cigarette hanging from her lips. That, for me, was where all the action was.

The Murphys were Catholics. Their house, clanking and buzzing with the messy clamor of laughing children, attracted me as a moth to a lightbulb. Toys lay on top of folded laundry in baskets. Someone was always chasing someone else: the game went on all day. Our swing set, sandpile, and chicken coop brought them all over to our backyard, too. My dad had planted a Victory Garden, which many Americans did during World War II, to be more self-sufficient. Dad also raised chickens. The Murphy kids used to love watching Bammy on a Sunday, going out to the chicken coop with her hatchet, grabbing the fattest hen she could find, and chopping its head off. We stood in wonder as it ran around for a few more minutes before its legs got the message.

The Murphy kids went to a private Catholic school. My friend Mary Frances told me she was going to be a nun when she grew up. I didn’t believe it for a minute. I couldn’t picture her in that penguin uniform they wore.

I always wanted to stay for dinner at the Murphys’ house because it was so different from mine. First, Mrs. Murphy had us hold out our spoons. She went around the table filling each one with cod-liver oil, which I found very tasty. Then we folded our hands and said, “Bless us, O Lord, and these thy gifts….” Dinner was often spaghetti with the best sauce I’d ever tasted, and
then, glory of glories, Jell-O for dessert. Mom and Bammy never made Jell-O.

At my house when we had spaghetti, it was very different. I would push mine around on the plate, and when asked why I wasn’t eating it, I would say, “I like Mrs. Murphy’s better.”

Mom considered herself the spaghetti queen; her gourmet sauce took an hour to prepare and a few more hours to simmer. When Irene and I were babies, she made us spaghetti with bacon, canned tomatoes, and Velveeta cheese. But for the family and guests, her big, meaty, grown-up spaghetti, laden with garlic, just a touch of sugar, and the secret ingredient, grated lemon peel, was the recipe all her friends copied. So naturally she was quite hurt that I preferred Mrs. Murphy’s spaghetti sauce, and wondered if it was a big family secret.

Mom called Catherine Murphy to ask for her spaghetti sauce recipe. Catherine took a big puff on her cigarette and said, “I’m not going to tell you.”

She had tasted Mom’s spaghetti. She wasn’t about to tell Mom she just poured a can of undiluted tomato soup over noodles.

To Mrs. Murphy, my family probably lived like royalty. Mom and Bam served elegant meals at our dinner table, laid with fresh flowers, crystal, and silver. My parents and my grandmother dressed up and went out a lot: Bammy to her bridge games, Mom and Dad to dinner parties. I have a memory of Mrs. Murphy, a wistful look on her face, balancing a baby on one hip, visiting our backyard as Mom laid embroidered white tablecloths and candles over card tables for a party that evening. Mrs. Murphy didn’t realize it, but for me, her house was a running party, all day, every day. She didn’t need any special settings: her big family
was
the party.

One summer evening Mrs. Murphy was standing at the top
of the steps on their back porch, watering the lawn with a hose. A baby was perched on her hip. Mr. Murphy, coming home from work, trudged up the hill from the bus stop, wearing his brown suit, and carrying his briefcase. As he approached, Mrs. Murphy very calmly and slowly turned the hose on him, drenching him completely, including his brown felt hat. There was no expression on her face. Mr. Murphy stood there dripping, looking back at her with no expression on his face, either. Mrs. Murphy, looking grave, turned the hose back to the lawn as if nothing had happened. We all stood stock still, staring.

Finally Mr. Murphy put down his soaked briefcase and started to shake with laughter. He ran up the stairs after Mrs. Murphy, who had dropped the hose and run with the baby into the house. Tommy grabbed the hose and showered us all as we scattered, squealing, across the yard. All I could think of was that my family would never have had that much fun in a month of summer evenings. Looking back on it, I can see that any woman might want to turn a hose on a man for whom she had borne six children in eight years.

Summer evenings at our house, my father’s parents or Mom’s brother Bob and his wife, Nicky, would drop in for a cocktail on the back patio. Uncle Bob, tall and handsome, and Aunt Nicky, who looked just like Vivien Leigh, completed our Sunday dinners. It was so pleasant: clinking ice cubes; the scent of freshly mown grass and roses in bloom against the white garage wall; Irene playing with a doll on the grass. Bammy might be sitting outside with them, crushing mint for her mint sauce, asking Dad to pull her freshly baked rolls from the oven while he made another drink. When we went inside for dinner, we would see out of the corner of our eyes some little Murphy faces peering in our
window. Bammy would get up and go to her extra pan of rolls, already split and buttered just for them, and hand them out, along with a jar of her raspberry jam and a spoon.

Mom also invited Dad’s folks to dinner. My other grandparents were schoolteachers; Wingie, my grandfather, was now a school principal, and Mammah taught English at a junior high. They loved the world of books, which sat in bookcases with glass covers in their little adobe house on U Street and Second Avenue. Whereas Bammy simply closed her eyes and told stories of her childhood, Mammah would get out a book and read to me. Her special treat was to let me go down the steep, rickety stairs in their musty basement to the grab bag. The grab bag was a pillowcase filled with odds and ends that nowadays would have been tossed in a box for the Goodwill. But Mammah kept every seemingly useless item: an empty thread spool, a lone pretty button, a piece of fabric wrapped in a rubber band, an old-fashioned clothespin. She knew that if you asked a child to close her eyes and reach in and grab three things, but only three, the mysteries of treasure not seen but just felt would hold magic for the whole afternoon. After feeling carefully around in the grab bag, I would come out with three items, and then Mammah and I would plan together what possibilities they held for us. A thread spool became a chair for a fairy; an empty perfume bottle could start a cosmetic counter where I sold many elegant scents; the fabric could be used to wrap and dress a clothespin doll. Mammah never spent money she didn’t need to. This drove my father crazy, as by now the Depression was over and life was not so hard. But Mammah and Wingie still persisted in wrapping the dinner rolls from a restaurant and putting them in her purse for breakfast. My father felt it was humiliating.

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