The World Within

“Jody was forever drifting off into private realms, while everything around her—the room she was in, the people she was with, the job she was on—faded like a memory.”

Jody had a round, innocent face and a soft, chubby body. She was twenty-five years old but, like many people with Down syndrome, looked younger than she was. At 4’5″ and 137 pounds, she was the shortest client at the Center—so short that after she climbed up into a chair, her feet wouldn’t reach the floor. She’d either let them dangle or tuck them underneath her or rest them on her footstool.

The footstool she carried wherever she went. She held it by its canvas strap, but carelessly, so it kept banging against her leg. She was too preoccupied to notice. As she walked, she looked straight down or stared into space or gawked at the ceiling, often while absentmindedly twirling her hair around her finger. She walked slowly, her tiny black patent leather shoes clacking on the linoleum floor. Sometimes an unfamiliar person standing in the lobby would catch her attention. Her gaze would stay on him like a homing device as her head became seemingly independent of her body—rolling up, around, and to the rear as she walked past him, wide-eyed and mesmerized.

Much of the time, however, Jody was oblivious to what was going on around her, absorbed as she was in her own bizarre, stereotypic behaviors: moving her mouth but making no sound; stroking her palm with the fingers of her other hand; looking up from her work and smiling at nothing or nodding at no one; getting up from her chair, turning 360 degrees, then sitting back down; staring at her hands while mumbling to herself; and gently biting the insides of her cheeks. If someone broke the spell by walking up to her and saying something, she’d let out a little “Oh!”—as though that person had, without warning, emerged from the thick fog that often seemed to envelop Jody, cutting her off from everyone and everything; or as though she had been awakened from a particularly compelling dream and was surprised to see we were all still here.

Jody was diagnosed psychotic, and was probably subject to visual or auditory hallucinations. Sometimes she sat with her fingers in her ears or with her hands cupped over her ears, or she’d put on the bright orange headset we allowed her to wear. When asked why she did these things, she’d respond, “Too loud.” She may have experienced auditory overload, which occurs when the brain is overwhelmed with more sounds than it can process. In response, Jody did what she could to stem the intrusion of unwanted voices or other sounds—voices or sounds that came perhaps from within, perhaps from without, perhaps both.

What went on in Jody’s head was a mystery. For instance, she arrived at the Center each morning seemingly content. She’d put her lunch away and hang up her coat, like everyone else. But then, during morning meeting, for no apparent reason, she would often fall apart.

The morning meeting was a pretty innocuous get-together. We’d take roll, announce any changes in work assignments or class schedules, and talk about other, miscellaneous matters. The meeting was run in a casual manner and was held in a room Jody felt comfortable in.

Frequently, though, it made her distraught. Crying loudly, she’d slide from her chair onto the floor.  If a teacher or supervisor helped her up, she’d immediately slide back down, screaming. Jody offered no explanation for this, and nothing that staff said or did seemed to have any effect, so eventually we decided to have her stay in the next room during the meeting. Even there, she’d sit on the floor, crying until it was time to go to work or class, but at least she was no longer disturbing everyone else.

Sometimes during one of these episodes I walked in and said, “Morning, Jo.”

She’d stop crying immediately and look up at me, her face streaked with tears. “Oh! Good morning, Glenn.” Jody’s speech had a simple, sincere tone, like that of a young child. Everything she said seemed somehow heartfelt.

“How are you doing today?” I’d ask.

“Oh, fine.”

“That’s good. Did you do anything special last night?”

“Watched TV.”

“Oh yeah? What’d you watch?”

Love Boat.”

“Uh-huh. Well, are you gonna work hard today?”

“Yeaaah, work hard.”

“Okay, good. I’ll see you later then, Jo.”

“See you later.”

Day after day these exchanges were identical. Then I’d leave and she’d resume her crying.

Jody wasn’t exactly a dynamic worker. In 1982, when we moved the Glass Department from the basement to the main floor, the clients did the carrying, usually taking good-sized loads: a couple of plastic chairs or a bin full of supplies, a box of glasses or a drawerful of tools. I was upstairs receiving all this, and would have expected Jody’s loads to be on the light side. Still, I was surprised one time when she walked up and handed me four bars of soap. Even at that rate she grew weary. We knew she was done for the day when, at two in the afternoon, we found her sitting on the floor of the foyer with her coat on.

When Jody was on the workfloor, sitting at her work station, she would descend into a kind of dream state. She understood work as something we asked her to do, but didn’t see it as a purpose-driven activity, an activity that was meant to achieve a particular goal. In the steelwooling area, I tried to show her the difference between a glass that was finished and a glass that still needed more work. She’d respond with a blank look, her mouth dropped open, her eyes unblinking. When she was working on a glass, she’d rub it lightly with the steel wool, but she wasn’t really trying to clean the grout off the mosaic pieces; she just found the rhythmic, repetitive motion a soothing one. Indeed, sometimes she fell into such a deep trance that if the steel wool slipped from her hand, she wouldn’t even notice. She’d continue with the same motion, gently stroking the glass with her now empty fingers.

Jody’s mind was like a radio station you keep losing when driving through the mountains. Her connection with the outside world was only intermittent—here one minute, gone the next. She was forever drifting off into private realms, while everything around her—the room she was in, the people she was with, the job she was on—faded like a memory.

People had been watching over Jody all her life. She had six half sisters and two half brothers, all older, and was the only child her parents had together. With some misgivings, they sent her to Boulder at age eight; but a year later, not happy with how she looked, they brought her home to stay. Jody became very attached to her father, and even as a teenager was sometimes afraid to enter an unfamiliar room unless he was holding her hand. He died when she was eighteen, though; after that, her favorite brother-in-law became a sort of surrogate father. At home she never did much on her own, though she might watch TV or do a little coloring if someone suggested it. When she turned twenty-three, her mother, feeling that Jody needed more of a social life, reluctantly put her in a group home.

Jody did bring out the protectiveness in people. At the Center, even Dave, who had enough trouble just taking care of himself, watched over her affectionately. “C’mon, Thody,” he’d say, putting his arm around her shoulders and escorting her down the hall.

Everybody liked Jody, though she seldom had much to say. She was barely conscious of other people, even where the most personal matters were concerned. You always knew when Jody was having her menstrual period because she’d open her lunch box and pull out a Tampax; then she’d carry it across the lunchroom and into the bathroom, heedless of the double takes from curious male clients.

Jody was like Doug in one respect: both led extraordinarily private lives. Both lived in worlds that other people couldn’t penetrate, though Jody was certainly more responsive to people. Doug, on the other hand, was much more aware of the objects around him, while Jody focused not on her environment but on the spellbinding allure of her own sensations.

One afternoon when the clients were outside, waiting for the buses, I watched for several minutes as Jody walked here and there, around and back, sometimes in a circle, sometimes in a line, like a toy mechanical mouse puttering about aimlessly. She was looking straight down, unaware of where she was going, and all the while was pulling her jacket zipper up and down, up and down. Eventually she found herself facing the wall of the building. She raised her head, and for about thirty seconds pressed her nose against one of the bricks. Then, head down, she went in motion once more, this time bumping into me. She looked up. “Oh, hi!”

The world within was where she lived; the world without she just passed through. Sometimes even that was too much. Occasionally she escaped the clamor and commotion of the Center by retiring, unnoticed, to our out-of-the-way storage room, lying down on the bed in there. She spent most of one morning sitting in another rarely used room; we didn’t even realize she had come to work that day until a supervisor happened upon her. And one day she apparently got to the lunchroom early, walked over to the floor-length draperies that ran along one wall, sat down on the floor, and wrapped the drapes around her. The lunchroom filled with clients and staff, but Jody remained hidden from view, detected by no one. She spent the next half hour in her own dark, solipsistic womb, and might have stayed there well into the afternoon if, as we were all leaving the lunchroom, someone hadn’t commented on the strange bulge in the curtains.

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