Larry Beard was born in Dodge City, Kansas in 1942. He was educated at the University of Kansas in Lawrence and took a degree with five majors: philosophy, history, psychology, art and foreign languages. "I had enough credits to graduate I don't know how many people," he rightly pointed out. Following university he began law school but after a year and a half ran out of steam. Larry has CMT and working like he did in university just did him in. He had to quit school, but, hey, we're getting ahead of ourselves.

Larry's arms and legs started to atrophy when he was a year and a half old and continued to atrophy throughout grade school. From Grade 7 on, he used a wheelchair for mobility. Visits to medical centres including the Mayo Clinic in Rochester finally saw him diagnosed as a child as having CMT. "Everyone else thought it was muscular dystrophy," he said. "It was easier for them to say."

"I had a lot of friends in high school to help me. I enjoyed all of my education...lots of friends."

But that didn't last it seems, for by the time Larry left law school pretty much exhausted to go to a Meade, Kansas hospital for a year to rest and get his strength back, friends were in short supply. "They (the people at the hospital) really had no place to put me when it was evident that I should leave the hospital. My family was not really able to handle me with me weighing 180 pounds." So, Larry went into a nursing home in January 1967. He was depressed and down. What had been a great beginning looked hopeless. "I went down to 68 pounds in 10 years," he said. "It was a Mennonite home for the aged and nursing home, okay for someone who is terminally ill, I think, but it isn't okay for someone who has a life. My neighbours were 103 and 109 and I was 23 years old when I went in."

For 22 years Larry lived at the home. I heard from him in 1984 right after I started CMT International. He was painting and writing poetry and had several books including the history of Meade, Kansas to his credit. He exhibited his paintings by mailing them to art shows all over the United States. He sent me newspaper clippings and I saw in the photos a very thin man, painting by holding the brushes between the palms of his hands. In his letters he showed me that he was very much still in tune with life but hesitant to break out of the home and perhaps afraid of what the outside had in store for him if he did make such a move. He had been told he would die if he left the home--a part of him believed it. He asked me to send him a T-shirt for his collection. I didn't. Heaven knows I would have if I'd have known that that was about all he had to wear.

Larry found life pretty boring in the nursing home. His schedule, believe it or not, was to be in bed by 5 p.m. and up at 5 a.m. "It seemed to fit into their system," he said. He sat at his desk all day long. "That's where I sat for 22 years. I had no computer, my manual dexterity is not good and my vision is not that great. I'm legally blind." He painted more than 2,000 paintings during the time he was there, wrote five books and corresponded with a lot of people all over the country. "I made friends over the years," Larry said. "I didn't really have any visitors. My parents, who eventually moved into a retirement home 150 miles away, and a relative, came about twice a year. I imagine it was hard on them seeing me there but they didn't realize it was harder on me being there. I was bathed twice a week. My food was half a peanut butter sandwich for supper because I didn't like institution food. I don't remember what else I ate. It tasted like cardboard, like the cardboard people who run those places." Larry's weight was up to about 80 pounds when things began to change.

Enter Ginny

Ginny Browning was born in New London, Connecticut in 1948 and was educated for 12 years in private catholic schools. She is able-bodied and married right after she finished high school. "My husband was in the navy and leaving for Vietnam so we got married right away," she said. "Our son, Tom, was born that winter while my husband was still away."

Ginny spent two years as a navy wife while her husband was stationed on a destroyer. "But," she said, "my husband had a severe drinking problem and at the beginning of 1969 he became abusive and I had to leave. I didn't want to bring my son up in that atmosphere. It was rough but it was worth it. From the time Tom was two until he was five years old I cleaned houses and babysat for money. Then when he went to school I went to work, full time."

Ginny had a variety of jobs in the secretarial field from 1971 on. She worked her way up to office manager and administrative assistant. "About 10 years ago I began working in the field of human services and I liked that a lot." She had also started back to college taking social services and public relations courses. Five years ago she got involved in two new projects to deinstitutionalize people who are mentally retarded. "At that point I saw firsthand the problems that are encountered every day by people who have disabilities. The physical barriers, the attitudes of people, just everything."

"I became involved with the disability rights movement and joined the independent living centre in Franklin which handles eastern Connecticut. That was two years ago. I was the second person to be hired and I was the administrative assistant and community educator, going out to school and seniors centres telling people what the centre is all about.

"We get a lot of information at the centre. A magazine on disability had an article about Larry in it. I looked at it and it made me feel a little sad that he'd been in a nursing home so long. I wrote to let him know that someone cared. I thought he would really be an interesting person to know. We wrote back and forth for four months and in those letters I could hear the despair and loneliness. I think Larry was on the verge of giving up, he was talking a lot about death and dying. I researched the drugs he was on. He was convinced he couldn't live outside the nursing home. The more I read about it all, the more I realized that it wasn't the CMT that was killing him but the loneliness and despair and the fact that he really didn't have anything to live for. He didn't want to spend any more time in the nursing home and the only way out was death.

"As an employee of the ILC I looked into benefits to see what he could get, when and if, he left there. Larry didn't get phone calls. I'm a talker and I'd call Larry just before bed at 5 p.m. and I talked to him every day for three months. It gave him something to live for every day. He didn't talk, he didn't know how to talk on the phone, no one ever called him. I used to wonder what's wrong with this person, but as months went by we talked about more and more and he started to open a bit.

"We arranged for me to go out to Meade Nov. 22, which is my birthday. At that point we had no intentions of him coming here to where I lived. We thought it might be a couple of months down the road. A week before my visit Larry said he was interested in coming back with me at that time. I think he was afraid that if I came and went he'd never see me again and he'd be left behind.

Ginny went to Kansas, and as she says, it was quite funny.

"I flew into Wichita and drive for three hours to Meade. I arrived about 7 p.m. I had these funny feelings as I drove up like, my God, I'm really here. I felt I already knew him. I saw the lodge sign, I went down the hall to his room, walked in and he was there. I put my arms around him and started to cry. He looked so little and lonely and scared but he had a big smile on his face and was he dirty! They hadn't cleaned him up in two weeks. He couldn't even brush his teeth himself and there was no one helping him.

We gathered up a few of his things; one of the nurses helped me get him into the car, and we drove to Dodge City about 40 miles away. His father had told him that if he even left with me on vacation he would stop all funding of the nursing home for him. I think that's what made Larry really decide to leave with me. We talked about what we were going to do. I had planned to stay a week but Larry didn't know if his father was going to have the police after him or what. I had checked into this beforehand and knew that Larry was a free person. He had no legal guardian and could do as he liked. The next day, Larry went to the bank and withdrew some money for his plane ticket back to Connecticut. The bank account was in his mother's name as well and he was sure the bank manager was on the phone to his mother and father. The bank manager asked him if he was going on a vacation as Larry was frantically signing travellers cheques. "I'm going on my own," he said simply.

"After the bank, we drove back to the nursing home. I'd brought a collapsible suitcase with me and I went into his room the back way and into the closet and began stuffing whatever I could into this bag. While I'm doing this, a nurse comes in. I tell her we need some extra shirts for the weekend. In the meantime I'm stuffing some 35 T-shirts into the bag and struggling to zipper it up as fast as I can. While I'm lugging this huge bag down the hall, the nurse is telling me that his parents have called and are trying to find him. We got the bag into the car and we drove off to Wichita.

"Once we got a motel room, we got on the phone to the airlines to get out as soon as possible. I'd only arrived the day before but we were anxious to get out of the state. Our flight out was booked for Friday. We spent the next day, Thanksgiving, in the motel room...sort of appropriate really, and we rented movies and had a great time. We got Larry cleaned up and shaved so he looked a lot better but he had no clothes except for his T-shirt collection and the pajama bottoms he had on when we left the home. I'm always kidding him that he flew on a major airline in his pajamas. That was his first airline flight.

"We finally arrived in Connecticut. I had Larry, a wheelchair and eight suitcases. We stayed at the Sheraton. We had planned to spend the weekend at the hotel to unwind but Larry was worried sick about meeting my son; about what my son would think. Larry only weighed 80 pounds. I had asked my son to pick up the suitcases. He walked in. I said, ‘Here's Larry.' He said, ‘Wow! Look at the neat television.' My son's 23. That was it. He was more interested in the TV than worried about Larry.

"About 6 p.m. we were laying down watching TV in the hotel room, just relaxing, when all of a sudden I felt the bed move. I asked Larry if he felt anything, and said, "Larry, this bed's moving! I'm looking underneath the bed, the bed was moving, it was vibrating and then I noticed the whole room was moving, the whole building. I knew this had been rough on us but I thought we were cracking up. It was the topic of conversation all night long. The next morning we walked down to the lobby and there were the headlines, Northeast Feels Earthquake. It was a first! I looked at him and laughed. You arrive in Connecticut and you bring the earthquake with you.

"We made it home on Sunday and had a friend bring in a portable ramp to get Larry into the house. A permanent ramp was built two weeks later.

The relationship was rough for about two months because Larry was coming off old medicines that he didn't really need. He was having headaches and was very tired. He ended up going to work with me and started working full time on a volunteer basis at the independent living centre, doing the newsletter.

"And I really enjoyed answering the phone," he said. "I became their full-time telephone operator and loved it." Sort of like a kid with a new toy after all of those years with not even one call.

Ginny and Larry decided to get married July 1, 1989 and because of that Larry lost some benefits from his father's social security.

"We came up to Ludlow, Vermont to get married and we fell in love with the area," he said. "The lifestyle is friendly and slow paced. We had talked about moving up there in four or five years but we decided why not do it now. We live in subsidized housing for elderly and disabled people and right now we aren't working but Ginny will be going to school full time in September, taking counselling and psychology and should be able to graduate in less than three years. Our pensions will take care of us in the meantime," Larry said. Ginny piped up, "I'm paid by the State of Vermont to take care of Larry."

"I think it's great," Larry said. "We've had quite a bit of snow. I like the colder weather. I can't stand heat at all. The weather in Kansas went from blizzard conditions to 116 in the summers. It was extreme and there were high winds all of the time. I enjoy there being no winds here. The winds exaggerate your feelings of being isolated and lonely, in fact some of the early pioneers went mad being out in the desert with nothing but wind. I now have all kinds of clothes."

"His shoes were 25 years old," Ginny said, "and didn't fit. His braces were useless, they had been made for him when he weighed 180 pounds and his glasses had never been changed. He no longer wears braces but tennis shoes, has new clothes and a transfer bench to help him get into the bathtub so he can keep clean on his own. We've had no help other than the MDA helped us buy a new wheelchair. He's a new man!"

How does Larry feel about it all? "People's attitude in public is different. They treat me more like a healthy person. Before, I looked ill and they treated me as an ill person. My wheelchair is better, the old one was a junior chair from eighth grade; now, I'm higher up."

"I call that neglect," Ginny said.

What does life have in store? Ginny is going to school, and they are looking at better housing in the city so Larry can get out to more things like concerts. Ginny's son only lives about 20 miles away so he can visit as often as he likes. Larry might go back to school and work on his master's degree in history and perhaps do some teaching if possible in an adult program.

"I'm just enjoying being out, enjoying the freedom. I keep telling Ginny I'm going to just go fishing and she can go to work." He laughs.

Update
April 1993

Linda Crabtree talks with Larry and Ginny Beard
In the February 1990 issue of the CMT Newsletter, we ran a story about Larry and Ginny Beard, living in Vermont, married a year and tying to adjust to each other. Larry had the additional challenge of trying to adjust to the world after having spent 22 years in a Mennonite Home for the Aged in Meade, Kansas.

Yes, Larry has CMT, and yes, he had been put in a home at the tender age of 23. No one thought of rehabilitation and it was before the time of independent living centres.
I've often thought Larry's life up to the time of his marriage would make a wonderful movie. Scenes depicting Ginny rescuing him from the home, their plane flight from Kansas with Larry in pajama bottoms for trousers because it was all he had, would be heart wrenching and yet hilarious. It would be sort of a CMT Rain Man, and who knows, someday it just might be written, but until that time, we'll follow their lives in the newsletter and keep watch over Larry, Ginny and her son Tom who are now living in Cape Cod, Massachusetts.

"We are renting now but our basic problem is that we've always been placed in apartment buildings mainly for senior citizens and we've been told by seniors that we don't belong there. They don't mean to criticize but feel we are taking up a space that could be filled by another senior citizen. What they don't realize is we've never been able to find a two-bedroom accessible unit anywhere. We have to have a ramp built. The bathroom in this house isn't accessible for my wheelchair. I haven't been in a shower in three years and I've been using a commode for two years," Larry said.

"Our move to Cape Cod was brought about because the weather is so much better here than in Vermont, the stores and shops are more accessible. Thirty per cent of the people living on The Cape are elderly, that's why it's so accessible. We are 3/4 of a mile from the Atlantic Ocean and half a mile from Cape Cod Bay.

"It's hard. There is great stress on Ginny being a full-time caregiver. She hasn't had a day off in five years. She has to back up what PCAs (Personal Care Attendants) we can find and make sure they show up and really ends up doing all the work anyway. Over a five-year period, she has only recently been able to find reliable people.

"Ginny is wife, caregiver, lover, nurse, homemaker and gofer, and each one of these jobs calls for separate times because they are separate roles. I'll also add she has to have one incredible sense of humour! You have to learn to be assertive. All of this is very stressful on her, on me and on the marriage. Some so-called experts have told us we have to be more normal. They say Ginny should go out and get a job," Larry said.

"After they have known me for a few months, they'll ask, ‘Are you working?' and if we move they say, ‘Maybe you can find a job there,' Ginny said. "I've become more assertive and I can tell them now, I have a full-time job; I look after Larry, and the house, and everything else."

"They have no idea what our life is really like," piped up Larry. "It's hard to find accessible doctors, dentists, optometrists. There may be a ramp outside but they have no way of getting you into the chair or onto the table.

"Transportation is a big problem. I have to have help getting in and out of the car. Ginny has to lift me in and out of bed and on and off the commode to my wheelchair. The problem is she has to lift me. I only weigh 120 pounds and I can put my arms around her neck so I'm not a complete dead weight but she's doing it eight to 10 times a day. We badly need to buy a wheelchair equipped van but I have no income so I can't get a loan and Ginny can't get paid for the work she does with me. We run into this kind of situation all the time, with no jobs we can't get loans. There has to be another way the financial institutions can investigate us. The Massachusetts Commission on the Blind here has given me a cheque cashing card or I'd not even be able to cash a cheque because I don't have a driver's licence. I'm also legally blind so I can get help through them. I've received a talking book machine from them and a cassette recorder, a talking clock and talking scale. They've been a big help."

Ginny then came on to say that some of the things that make Larry's life better are a remote control device that can turn on and off his lights, fan, radio, stereo, TV so he has control over his immediate environment. Larry also has a speaker phone and an intercom system so he can speak to Ginny throughout the house.

"Some of the things we enjoy are drives to the beach and strolling down the boardwalks and getting into the sand. We are able to go to a lot of concerts in the summer and we love eating out," she said.

And Larry added in his sober, deep voice, "We find solace in art, poetry, nature and music."

"I read to him. Sometimes I'll sit down and read a whole book over a couple of evenings. Larry is working on his autobiography and we are really writing it together so that keeps us busy, too," Ginny interjected.

"I feel I've adjusted pretty well; the biggest problems are mobility, transfers and fatigue," Larry said. "I think I'm realizing what few pains I do have are connected to my personality and not my disability. I'm a perfectionist. I just love being with Ginny and just love everything we do. I love the freedom and control mainly, the electric wheelchair emphasizes that control. From my chair I can see people in the eye instead of looking at them in the crotch. Also, if I want to leave a conversation, I can just roll away. I'm finding all kinds of things to do. If someone is disagreeable I can follow them down the sidewalk and argue with them. An electric wheelchair does give you a sense of power. In the nursing home, I had no knowledge of my rights."

"Larry doesn't need care," Ginny asserted, "he needs assistance. I assist him and it's the easiest thing in the world. It's time consuming and it's 24 hours a day, but what makes it so easy is that he's the kindest and sweetest man in the world to help. I wish I'd have met him 22 years before I did.

"In spite of some of the setbacks, I wouldn't change it for anything," Larry said, "and I really have to acknowledge some of the wonderful people who have helped us over the years in New York, Vermont and now here in Massachusetts. These people have really helped us out financially and otherwise when we've really needed it. We've found out who our friends really are over the years."