Looking down at my younger brother’s feet in the beach parking lot, I thought such whiteness existed only in the dead.

Standing next to him in the elevator, I knew we were far apart.

SHELLSHOCKED

Looking down at my younger brother’s feet in the beach parking lot, I thought such whiteness existed only in the dead. It was a reminder that he didn’t get outdoors much, and this made me, an avid open-water swimmer, sad.
Fred “went away” to the Willowbrook State School for the Mentally Retarded at the age of four and from the age of twenty has resided in a group home for people with disabilities. Mom and Dad were his connection to “typical” life until their deaths. And I was always his hero. But probably because of a childhood of Sunday visits “to take Fred out,” I focused on career as a young adult and we became acquaintances. Becoming his guardian in my 50’s, I now wondered if we could again become brothers.
Although Fred was comfortable living among eight others with disabilities, he preferred spending free time with people labeled “typical.” Today, he was with my wife Lisbeth… and me.
We had just driven an hour from Manhattan to take advantage of the warm, almost breezeless October weather for a day at the beach. Fred often said he’d like to go, but when Mom was alive, he preferred walking with her on the boardwalk, not on the sand. He disliked “mess.”
We had removed our shoes because recent storms had flooded the area between us and the 200-yard-away shoreline. The distance always discouraged crowds; but this would be a particularly quiet day not only because of the time of year but circumnavigating the “pond” required hiking over brush-covered, four-foot dunes.
“I’m gonna fall down,” Fred said, as we made our first ascent. Because of asphyxiation at his premature birth, his disabilities included a poor sense of balance. His speech had also been impaired. Usually chatty, he’d determinedly battle a disobliging tongue to be understood.
“You’re not gonna fall down,” I said, unwilling to accept weakness…in either of us—a trait of the “typical” sibling.
“I don’t wanna go,” he said.
Fred often cancelled plans—not unlike Mom. Although strong-willed, she was ruled by fear—of what could happen…of what did happen.
By law, Fred’s counselors couldn’t force him to do things; I could.
“Come on.”
He grabbed my arm and pulled forward, oblivious to the sharp, long blades of grass. In a hurry to get it over with?
Lisbeth waved. “This way; we’re there.”
At the base of the last dune, Fred contorted his face, reared back his arm as if to throw something, and roared, “Aarrgh!”
Although easy going, Fred threw things when frustrated. “Hit the bed,” I had been advising, something learned as a student actor to dispel post-scene emotion. But when unprocessed information assaulted—walking against blowing snow, observing confusion, suffering unremitting noise—there would be no time to find a bed. When his eyeglasses or personal cassette player were unavailable to throw, his hand would go into the glass pane of a photo frame or his forearm down upon a dining table.
Lisbeth and I watched my brother’s delayed reaction to a disorderly hike.
Silence.
“No complaining today, Fred,” Lisbeth said in her direct manner of a professional psychoanalyst, reminding him of the remark that always preceded special occasions—a stay-over at our house, his birthday evening at the theater…the anniversary visits to Mom and Dad’s gravesite. Lisbeth and I had been exploring my brother’s untapped abilities, unseen by my parents and disregarded by the professionals that had been surrounding him until the past year.
Fred’s storm abruptly stopped.
At a spot nestled within dunes, we sat on our large, white blanket.
“Eat,” said Fred, a 102-pound, 5’2” man, always ready to eat, even after having just eaten.
“This is the life,” said Lisbeth, right behind my brother. “Isn’t it, Freddy? ... Freddy?”
He was focused on his grilled chicken on a bagel, coffee from our thermos by his side—even the ocean didn’t distract him. Did his three-minute feedings as a child, administered by attendants, each responsible for fifty children, train him to eat quickly and with such intensity? “Chew your food… slow down… put the sandwich down for a minute,” we frequently commented during mealtimes with Fred.
He dismissed Lisbeth with a wave of his arm. Some chicken fell onto his lap. He looked at me with a needy expression, pointing at the fallen food. This mimed helplessness annoyed me. Fred had become accustomed to people responding to his unspoken pleas to speed up shoelace tying, coat zippering or room cleaning.
“Pick it up and stick it back in,” I said. And he did. Fred didn’t know how capable he really was. When Lisbeth first observed potential, I felt upset and then anguished. A life had been limited, not because of intellectual disability but because professionals serving my brother were at first unaware that everyone could learn, and then overwhelmed by learning how to teach. I advocated for higher expectations of my brother. The three of us defeated his former group home supervisor’s unhealthy possessiveness of Fred, recently getting him into a better-managed home that had more mature staff and was located nearer to Lisbeth and me; we also found a different day program, its engaged, numerous counselors addressing his interests in reading, writing and music. He was no longer running through his home screaming; he was no longer avoiding personal grooming; he was no longer “in mourning for his life.”
A party fishing boat silently rested on the water’s surface half a mile away. The quiet lulled us; the usually ubiquitous seagulls were busy elsewhere, more interested in crabs and clams than our lunch. And the stillness that Fred insisted on was enjoyed by all, as we lay back to first look at clear blue and then nothing. It was a day for soothing the senses.
“It’s time to go in,” said Lisbeth. “We should do it now while the sun is hottest.”
“Fred, you want to go in?” I said.
“I’ll watch.”
Standing at the foot of the sea, where Lisbeth squealed, I turned back to see my brother. Bundled in his grey, hooded winter coat, he was a seal on the Arctic ice, patiently awaiting spring.
“Allan, come out, what are you doing?” said Lisbeth after a whoop of excitement. The surf was breaking over my legs as I held a thermometer/watch under water.
Sixty-six flashed on its face, the temperature of early-season one-mile Masters open water competitions. Sixty-two. Sixty. Fifty-six.
At fifty-five degrees, I was satisfied the reading would drop no further. It was no colder than the Norwegian glacier lake where Lisbeth and I were exhilarated two summers earlier after doing three sets of ten strokes each. I wrapped the watch onto my wrist and pulled my goggles over my eyes. As Lisbeth hopped at the shore, I took a deep breath and fell forward into rolling waves. Slap, slap, slap went my arms, more to stay warm than to swim, my head above the surface. “Whew! Whew!” My next slap, slap, slaps were drowned out by Lisbeth screaming “Aiiii,” as she bounded in. “Aiii!” emanated between gasps for air as the cold emptied our lungs.
I lowered my head into the water and realized swimming wasn’t going to happen—earplugs and two caps didn’t prevent a numbing head. A few more slaps against the salty friend of summer and catching Lisbeth’s eye, we lunged toward shore, ran to the blanket, and avoided splashing Fred as we wiggled out of bathing suits to pull on our sweats, warmed by the sun.
“Fred, you want to go in?” I said.
“No.” Our whelping had not fazed him. He didn’t get the joke. A simple “No.”
“Let’s walk along the beach,” said Lisbeth, “to warm up.”
“Fred, you want to walk?” I asked.
“Yeah.”
Half way toward the water, I turned to wait for my brother, who had had trouble standing up. He came forward and stopped. “I don’t wanna walk.”
Was he miffed that we had gone ahead? Just stiff from sitting so long? Was my desire dismissing his? Or was this sibling rivalry?
“Come on,” I said.
We looked at a boy and two women leaning against a dune. Our waves of hello were not returned. What did they see? Did they see us? I deliberately didn’t inform new friends about to meet Fred of his disability, as I didn’t think it was something worth noting. But with strangers only glimpsing him, I was always apprehensive about their attitude, a reaction acquired from a childhood of walking alongside my brother. I had often found myself avoiding stares by keeping my head up, shoulders squared, and eyes forward, something I didn’t discuss with my parents, who were probably doing the same thing; I never met other “siblings” even though we lived in a housing project of thousands and one out of every ten American families is affected by intellectual and developmental disabilities. And despite deinstitutionalization and society’s “inclusion” of those with disabilities in community activities, I still studied strangers. Would they gawk … greet…run away from Fred’s droopy left eye, crooked eyeglasses, and this day, his oddly angled stocking cap?
“Nice day,” said Fred, no longer looking at the dune people.
“It’s a great day.”
The huge expanse of soft sand received our footprints as we occasionally rushed away from a sudden lapping of ocean wave; many seagulls chased another that was seeking a secure place to eat a fish sticking out of both sides of its beak. Gull calls cut through surging surf, surrounding us with a hypnotic symphony.
Fred bent down.
“What’s this?” he asked.
“It’s a shell. Put two together and they make a house.”
“Yeah?”
“The house protects a kind of fish called a clam or a scallop. This is a large clam shell.”
“Can I take it home?”
“Yeah.”
He picked up another and, as we negotiated the uneven sand, was soon balancing many, one atop the other.
“Paint them.”
“What?”
“Paint ‘em. Everybody. Bring them home.”
Fred’s housemates often did arts and crafts around the dinner table—this week they would paint seashells.
“Sure. Sure, you can paint them. That’s a great idea. And it’s very thoughtful of you to include everybody.”
“Here’s a good one, Fred,” Lisbeth said. “It’s perfect.” As his collection was about to topple, I held out the bottom of my sweatshirt to serve as a basket. “Here’s a great one,” continued Lisbeth, “but I’ll have to rinse it off.”
“Let Fred do it,” I said, to her retreating back. I feared he’d let her do all the bending and rinsing. Intent on self-esteem building, I wanted him to remain in action. Fred pointed to another shell.
“Pick it up,” I said, and he did. Lisbeth was too enthused for me to conquer her several rinse runs to the sea before she walked ahead.
Four motor homes huddled together, facing the waves. Each had fishing gear and a large cooler attached to its front fender for the men heaving baited fishing lines fifty yards into the Atlantic.
“How you doing?” each fisherman asked as we passed, Fred winning friends among faces etched with lines not caused only by weather.
“Hello,” said a smiling Fred next to a relieved me.
A five-year-old girl, at the feet of her snoozing dad, was scraping a path to the sea with her tiny fingers.
“Fred, do you want to give the little girl a shell?”
“Yeah.”
“Hi, would you like this?” I asked, unintentionally waking up the dad and surprising the girl.
“Yes,” she said, demurely studying the sand.
“Go ahead, give it to her,” I told Fred.
My brother took a step forward, extended his arm, and bent at the waist. “Here.”
“Thank you,” said the girl, boldly taking the shell.
“That’s very sweet,” said the grinning dad.
We had about ten pounds of shells when we reached the blanket.
“What you got there, Fred?” asked Lisbeth.
“Shells,” Fred said.
“You’re not planning to take them home?” she asked me, not one for clutter.
“Fred’s going to paint ‘em with his friends,” I said.
“All of them?”
Fred left the blanket to circulate over yet another cluster of shells. I watched, transfixed by the lone, little figure engaged in an independent activity. My brother was selecting shells for his collection…for his friends…for his plan. A picture etched into memory.
Although returning to the car still entailed “I’m gonna fall down” and plunging ahead unaware of the sharp blades of grass, there was no “Aarrgh!” in the parking lot where we brushed sand from between our toes and put on our socks and…shoes. Instead of sneakers, Fred had chosen to wear black oxfords; with pant legs still rolled up and stocking cap poking off to the right, he resembled a golfer…in Scotland.
“Fred, roll down your pants.” We chuckled, before piling into the car.
At his apartment building, Lisbeth said, “Fred, I want a painted shell.” But he was already hauling his three plastic bags of sea souvenirs into the lobby.
Standing next to him in the elevator, I knew we were far apart. But I didn’t know that a discovery of shells would one day evoke a family story shared by brothers.

Comments

NoNickname1 says,

I enjoyed reading your sweet story. My brother, Philip had Down Syndrome and was raised in a state institution. Because it upset my dad, it was something we didn't talk about and in fact was kept a secret from outside the family. My parents died in 1980 and Philip died from a heart attack a short time later. He was 41 years old. Sad, I think.

Fredsbrother says,

I'm so sorry you had such a short time to know your brother. And that you had to be part of a family secret, which hurt Dad and diminished Philip. Thanks for writing.

LLLopera says,

Your story was wonderful in so many ways. I'm writing about my life with my sister who's a year and a half younger than I am and has a rather lower intellectual level of about 18 months. I love the interaction you described with your brother and how you sense what he needs and know his abilities better than any one else. I admire your taking action to improve his living situation. I am not in the position to do that for my sister and she lives on the other side of the country. She's in Minnesota and I'm in Texas. I know I ache for her sometimes, because I can't give her words to speak or a kiss good night. I've come to realize though that she represents a part of me that I long to give expression to also. Being a sibling of a MR person is so complicated and challenging, but also rewarding. Thanks for your story.

Fredsbrother says,

LLLopera,
Just in case you are unaware of SibNet, here's the link.
http://www.siblingsupport.org/connect/the-sibnet-listserv

Allan

Bevvie says,

Wish I could meet Fred!

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