Living with a disability and making it work for you and others
C.M., O.Ont., O.M.C., B.A., LL.D.(hon.)
Founder of AccessibleNiagara.com and CMT International (1984 - 2002)
Community Action Award (ON Govt.) 2009
Tourism Industry Association of Ontario Volunteer of the Year 2008
I think this is a bit much but a lot of people like to know who they are writing or talking to, so here goes.
I was born in Ontario, Canada in the early 1940s. By the time I was eight months old there was "something wrong with Linda." At birth I had my mother's very high-arched feet but as I began to carry my weight and learn to walk they soon fell until I had very flat feet. I learned very early that to stand still I had to bend my knees, and I remember being so tired from standing like that in line at the local movie theatre I'd pay my girlfriend's way into the theatre so she would be close at hand and I could just touch her to keep my balance and not have to bend my knees.
By the time I was six or seven, I had complete foot drop meaning I couldn't lift my foot to hit the ground with my heel as I took a step. By the time I was 12, I couldn't move anything, not toes, ankles, or even stretch out my leg from the knee... everything had atrophied in spite of (or perhaps partially because of) almost nightly physiotherapy sessions with my mother under the direction of a doctor. Because of the foot drop, I tripped often and had chronically bruised and cut knees; so I was put into heavy, metal braces from age seven until 14 when I protested so much my mother threw them in the closet. After that I wore soft, light moccasins and other very light shoes until I was 17 when I quit high school and joined the local newspaper, working in the library or morgue. One of the photographers at the paper got to know me and told me he had a friend studying to be an orthopedic surgeon at McGill University in Montreal and that he'd ask him about me. By that time I had been vaguely diagnosed but nobody was really sure what it was. Most doctors thought I'd had polio. Remember, this was in the 50s so not much was known about the disease I do have which is called Charcot-Marie-Tooth disease. CMT is named after two French neurologists and an English physician, Howard H. Tooth. CMT is also known as hereditary motor and sensory neuropathy.
That young McGill student sent me to a new doctor in town who had just moved up to Ontario from California. He knew how to do a foot and ankle fusion and I had both feet and ankles fused using a procedure known as a Triple Lambrinudi Arthrodesis. Each ankle and foot had to be fused separately but, in my case, there were five operations altogether because the doctor fused one heel over too far to the outside and I couldn't wear a shoe on that foot. The operations and healing time took two and a half years from age 19 to 21. I was in cast five times for six months each time and alternated between casts to the knee and then full leg casts depending on what he was fusing at the time, foot or ankle. After that, I had just about all of my toes fused because they were curling under and I was walking on my toenails.
Finding shoes had always been a real problem but after the operations I found my heels were still set so far to the outside that I could break down a pair of normal shoes in a week. I finally found a really good custom shoemaker, Johnson Brothers in Scarborough, Ontario, and they have make me lovely high boots with reinforced heels.
I think I was a week out of my final cast when, at 21, I boarded a train heading for Montreal and art school where I used crutches for the first two months and then gradually learned to walk again. My knees were so weak and I had lost so much strength in my legs that I had to have someone walk to school with me or I'd "knee" it up the curbs. Walking down a road until you find a curb or a driveway isn't safe in any big city. My friends were all trained and all learned to be a walking railing for "Crabtree" for the three years I studied art in Montreal.
My first job out of art school was in a photo studio where I "bummed" it up a huge flight of steps each morning to the second floor and didn't "bum" it back down until closing time. It too much work to go out for lunch. I bought running shoes to wear so I wouldn't slide in the water coming off the print dryers that I worked, pulling thousands of photos of half-naked women standing beside stacked cans of oil. Needless to say, I got out of there quickly and got a job with another art studio specializing in work for the World's Fair, Expo '67.
In 1968, I returned to Toronto and married. And, I eventually returned to work for the local newspaper, this time taking obituaries every morning over the telephone from local undertakers and deciphering and preparing thousands of letters-to-the-editor for print. Not too long after, I was given the job of editing a weekly page on art and I did that for nine years (still doing obits and letters-to-the-editor, as well) and then was promoted to the Family Section where I wrote about everything. During the last two years, I noticed that I was having trouble typing on the computer at work and that I was exhausted most of the time, couldn't climb stairs even with a railing and would often fall down stairs. I have always driven with hand controls and one morning I drove into the employees' parking lot, opened the door and fell out and under my car. I thought, as I looked up at the exhaust system, there has to be something else for me, I just can't do this any longer. I retired from the paper six months later after 12 years. I was so down I was suicidal.
My biggest problem was I had never really accepted my CMT and suddenly, it seemed, I was so disabled I couldn't function. I'd written about disability for years but I had always avoided other people who were disabled not wanting to be thought of as "one of them." But I was one of them, whether I liked it or not, and if I wanted to get on with my life I had better start getting used to the fact that I had a pretty severe disability.
A few appointments with a very good psychiatrist who let me talk set me back on an even keel and I enrolled myself in university to find out why I was so down, so depressed, what had happened to me. I studied psychology for three years, only taking courses in other fields because I had to, and I learned a lot. I was allowed to tailor-make some of my studies and I dove into grief and rehabilitation counseling like a duck to water. Just to show you how much my life turned around while at university, I began wanting to specialize in grief counseling and graduated doing work on sex and disability. Quite a turnaround, I'd say!
When I began university, I realized I had to get an electric scooter because I couldn't walk the halls, I'd get knocked over. When I graduated with honors on that same scooter at age 45, I received a standing ovation from the crowd. Little did I know that seven years later I'd again be on that same stage receiving an honorary doctorate.
After graduation, I was accepted into the State University of New York at Buffalo for my MS degree in rehabilitation counseling but after four months I was a basket case. It broke my heart but I had to leave. My mind was eager to learn more, my body simply wasn't up to it.
The second year of my studies at Brock, 1984, I didn't take a summer evening course and decided that I needed to find others who also had CMT. I had only met one other person who had it and I needed to know more about the disease that was changing my life so I could truly be well mentally. Unfortunately (or fortunately depending on how you look at it), the Muscular Dystrophy Association of Canada didn't return my calls, so I sat down and wrote letters to editors of major newspapers all across Canada. Before I knew it, I had received letters from more than 300 people, all with CMT, all searching for the same answers. I also wrote to American papers and more people came forward. I almost panicked. There was no way I could answer all of those people so the only thing to do was to put my artistic, photographic and writing experience to work and start a newsletter.
The CMT Newsletter was born in August 1984. After that came CMT International, the not-for-profit organization, to keep the newsletter going, and after that several conventions that almost wore me to the ground and some guest speaking that I also found exhausting. I could dictate letters though and could help by talking to people with CMT on the telephone and through mail and e-mail. Thank heaven for good secretaries.
The 32 page, CMT Newsletter went out to several thousand people in 22 countries for 18 years until my husband turned 65 and I go so terribly weak even talking became exhausting. I had always relied on the expertise of good people who were able to do what my mind dreamed up. But by now, I could no longer walk at all, had lost the use of my vocal cords and had been operated on to help that, was having trouble with exhaustion and breathing, had experienced double cataract surgery and my hands were so weak I could barely shuffle paper much less hold a pen for any length of time.
We had helped thousand, promoted research, given away thousands of dollars of scholarship money to students with CMT all over the world, and published 103 newsletters that went out to some 32 countries. We shut the charity down in February 2002, leaving a huge website behind that featured the best of those 103 newsletters. It is still up at www.lindacrabtree.com.(this website).
During that time, I became a member of the Order of Ontario and the Order of Canada, was made a Paul Harris Fellow through Rotary International and an honorary lifetime member of Beta Sigma Phi as well as having received the Canada Volunteer Award. I have a whole wall of medals and honors from the government and awards from organizations.
Someone asked me once what these awards meant to me. I have thought about it because I've had most of them for many years. Because they come from my peers and my country they help me see that even though I am severely disabled physically, I've accomplished something worthwhile during my lifetime. I've been able to help others better cope with their disability. I found something worthwhile that I could do, even though my CMT was progressing, and I did it. I'll try to help others until I die or I can no longer talk, see or type at all ...I think it's just part of my nature. I really don't feel there is anything better you can do with your time on earth or spend your physical being doing than helping others.
Someone once told me that when I left the paper I could have done absolutely nothing for the rest of my life and no one would have thought less of me. I know I would have ended up in a mental institution. I have a need to give, to keep busy no matter how little I have to give, and a need to write. A blank computer screen is an exciting challenge to me. How best can I use it to help people out there searching, as I was and still am, for answers.
Believe it or not, I still run into people who think I'm developmentally delayed because my hands look like claws and I use a wheelchair or scooter for mobility. They are far and few between but hearing them enunciate D-I-S-T-I-N-C-T-L-Y as they speak loudly to me and sometimes being on the receiving end of their impatience, makes me take one look at that wall of medals, honors and degrees and I know I'm none of the things they think I am. I don't even need the medals anymore. I know who I am and what I have done throughout my life and believe there is nothing lacking there. I guess that through the years, I sometimes needed to be told that my effort and work was worthwhile and I certainly have been told, many times over. It has been wonderful! My mother laughed when she said that I'm the only person she knows who has more letters after their name then they have name. It's true.
In 1977, I divorced my first husband and in 1980 married Ron Book, who ran the CMT International office for 18 years and now, in his retirement, looks after the house and me and the dog so that I can do the things I want to do without worrying about what we have clean to wear or who's making supper... things like learning how to put up websites (I'm not the bridge playing type or a reader except for newspapers), write columns and do my artwork. Ron is one terrific guy. It isn't every man who would dig into housework and cook.
I can no longer walk and use an electric scooter all the time, indoors and out. To that end, we have our Toyota Sienna Entervan made by the Braun people and Northend Mobility in Welland, ON. There's a side loading, electrically run ramp that unfolds smoothly from the door behind the passenger seat. I can bomb backwards up the ramp on my scooter, leave it behind the seats, transfer to the driver's seat and away I go using my hand-controls. I love that van and it gets me all over Niagara.
My hands are very weak and I have no real grip but use a special quad grip that my entire hand fits into to hold the steering wheel. I type on the computer by using the knuckles of the little fingers of both hands or lightweight braces that give me one stiff finger on each hand. I am learning to use MacSpeech so I don’t have to use my hands on the computer at all.
My vocal cords are affected so I’m learning how to speak more efficiently at the local rehab centre. Speaking wears me out and using my voice constantly could mean I lose my voice again so I have to be very careful.
I have breathing problems with my CMT and do not sleep well. I also have a lot of pain from sitting but when you don't walk you haven't much of an alternative. I cannot cook because I drop everything. I can still feed myself but I can't cut the food most of the time. My hands just won't grip the utensils. However, I have found that if I take my own advice and make pacing and moderation my watchwords, I not only have a voice most days but breathe pretty well most of the time. Exhaustion is with me a great deal though so I have to limit everything I do.
After trying six months of not doing much at all in 2002, I found that I had to keep my mind busy or go a bit nuts so I regenerated a project I had started in 1997 called Accessible Niagara. It had three parts to it: a website at www.AccessibleNiagara.com and a printed guide echoing the information on the website but in less detail because space is limited in its 28 pages. The third step is a multi-million dollar resort for people with disabilities called Trillium Forest that I'd love to see built in Niagara but, being realistic, don't think I'll ever see happen in my lifetime. However, another person had the same idea as I did at the same time and he has been able to move forward with it. I've learned that if it is a good idea, it doesn't matter who does it, as long as it gets done. It is called Heartland Forest and it is turning into an absolute gem for Niagara. It is totally accessible and universal design is being used as the plans evolve.
In May of 2002, I joined the Mayor's Advisory Committee on Accessibility for the City of St. Catharines and was co-chair and also vice-chair of the Region of Niagara Accessibility Advisory Committee. I've also written a regular column called Access Niagara focusing on disability and accessibility for The St. Catharines Standard for many years. I am able to volunteer my time, as usual, as long as I can work at my own speed, rest when I have to, and can keep the chronic nerve pain I experience under control.
My involvement in the community has been recognized during the last several years with the Canadian Peter F. Drucker Niagara Regional Voluntary Sector Innovation Award for Community Leadership, the Joe Dinely Commemorative Award for Exceptional Leadership and Commitment to Furthering Integration and Accessibility of Persons with Disabilities in the Niagara Community, from the Ontario March of Dimes, and the T. Roy Adams Humanitarian of the Year Award from the Region of Niagara along with the Ontario March of Dimes Rick Hansen Award of Excellence.
In 2008 I was made a member of the Terry Fox Hall of Fame and awarded the Tourism Industry Association of Ontario Volunteer of the Year for the AccessibleNiagara.com website and the printed guide. In 2009 I received a Community Action Award from the Province of Ontario.
Living with a progressively debilitating, neuromuscular disease all of my life, and now with chronic pain as well, has taught me a lot. I still don't really know my limitations but maybe that's a good thing. I think that if you stop stretching your mind, you might as well be dead. Unfortunately, pushing myself into challenges that excite me also wears out my body but I'll never have to say I let my mind stagnate. I tire quickly because I've perhaps half of the muscle function of a normal person and my nervous system is severely compromised. Some days I'm just no good for anything but rest. But, I'm always learning something new or on the edge of tackling something I've never done before. I went gliding a while back and had a ball. It’s on my blog at www.lindacrabtree.wordpress.com. I’ve also put AccessibleNiagara.com on Facebook And, I am working on managing my pain.
Every morning, when I wake up, I make a mental assessment of what’s going on in my life and if it doesn’t excite me enough to make me want to get on my scooter and get going, I change things. There may be a great many things I cannot do but there are so many things I can do and it is up to me to find what excites me, makes me feel worthwhile, and lets me give back.
There, now you know about me!