One of Us

Another beautiful day. Didn't do anything until late in the afternoon.

Call was at a group home for a patient who fell and had hip pain. I wasn't impressed with the pain, but the patient had osteoporisis, and it was a group home so the patient pretty much had to go get checked out.

All group home patients have a big binder that holds all their medical records. The aides, who accompany the patient, always want to take the binder with them in their car when they follow. I always ask to keep the binder with the patient. En route I read it, and use the information to fill out my trip card, meds, allergies, history, insurance numbers. They let me take it this time without much of a fight. I copy down the insurance numbers. She is on state Title 19 and Medicare.

The woman is in her 50s. She seems very childlike, but fully alert and oriented. She has no physical disabilities. She talks a mile a minute, often laughing and cracking jokes. I ask to take her blood pressure. "Oh, no you don't, call the police," she says. "Help, robber, robber." Then she laughs. "I suppose you want my pulse too, Go on, its yours, I'm helpless. You've got me strapped down, just give it back when your done." And she laughs again.

I am interested in her, 1) because she is so funny and peculiar and 2) because she has a famous last name. From talking to her further I learn that she does indeed come from the famous family whose name she bears.

While she talks to my partner about all the places she's lived (not Long Island, New York City, Miami, Paris but Mansfield Training Center, and later about eight different group homes), I peruse through her book.

"They thought I didn't know anything, but I could spell, read, write, do arthimatic, geography, history, penmanship. I showed them. They tried to keep me in a straightjacket. Ha ha. Ha. I told them in court what they did us. No more. They stopped that lickeyed split."

The Mansfield Training Center was a wharehouse for people with disabilities who had no one to care for them. After allegations and investigation of abuse, the state's institutions were closed down and patients disbursed to group homes. This was over twenty years ago.

"See this. You know what this is." She points to her throat. "That's a tracheotomy. I had one. I was little. I had pnemonia. I almost died."

I read her chart. It say she was a perfectly normal schoolgirl. Then she got a fever and lapsed into a coma. Her mental development was halted. Her intelligence tests place her between a seven and thirteen year old. She is described as being very pleasent, conversational, enjoys reading, going to the movies and chatting with friends. I read that she is subject to occasional moodiness, usually predicted by the job departure of a aide. She is basically just a young girl in a the body of a fifty-plus year old woman.

I ask some questions, curious. "When did you get sick?"

"When I was little."

"When you were ten?"

"Yes, that's right. I was in school, then I got sick."

"When did you go back to school?"

"I haven't gone back yet. No more reading, writing, artithmatic lessons for me."

I ask her if she sees her family.

"Sometimes they visit."

"When was the last time?"

She shruggs.

"Did you like it at the Training Center?"

"No, but I had friends there. One day someone dropped off a girl in a bucket. Nothing but a bucket. She was a Mongoliod. They didn't want her. That's not right. We're all as god made us, big little rich, poor, fat skinny, pretty, homely, smart, dumb, strong , weak. He loves us all -- that's his plan. People should be the same way. She was just a mongoloid. Didn't hurt anybody, and she was nice, and funny, too. That times we had." She laughs. "I could tell you stories, the trouble we got in. Then one day, somone adopted her. I prayed for her every night that she'd find a happy family. It happened for her. Not for me, but for her it came true. She was my good friend. I miss her. She was nice."

She looks at my partner and touching her sweater says, "White, white, you'll get married tonight."

"Oh, I've already been married," my partner says. "Many years ago."

"You like boys?" she asks.

"I love my husband."

"Let me tell you a secret. Bend over." My partner bends over and she holds her hand up and she whispers in my partner's ear, then blushes and breaks out laughing.

My partner laughs too.

"Can't live with them. Can't live without them," the girl says.

***

There was a patient at one of the local nursing homes I occassionaly was called to help. He was related to a famous American. He shot himself accidently while hunting as a young boy, over fifty years before. Spent his life in institutions. He was just a TBI patient, but could carry on a good conversation.

***

John F. Kennedy had a disabled sister, Rosemary, who spent her life in an institution.

***

I am continually amazed at the number of people I see in this job, who take care of sick family members, family members with cancer, or with physical or mental disabilities, who take care of them in their own homes, with their family always around. I worry that if I were in that situation, I would be the type that might just leave home one night for a drink at the local bar, and then just never come back. It must be exhausting for them. What a tough blow life has dealt them. What a change from everything they had known before. I once said to a person, how much I admired them for the way they -- and their whole family -- took care of their severely disabled daughter. They had to turn her and feed her, and clean her. And she couldn't even speak. She could smile, and had eyes that followed them, and could communicate with grunts. But that was it.

"How could we not?" the mother said. "How could we not? She is one of us. "