CMT and Me: An Intimate 75-year Journey of Love, Loss and Refusal to Surrender to a Disabling Disease

When Linda Crabtree was growing up in a small Canadian city in the early ‘40s, the future for a little kid with a disability didn’t look too promising. Seventy-five years later she writes about her forays into education, journalism, running a charity, publishing, art, antiques, designing a house and her travels. The emotional undercurrents of love, the question of children, marriage, alcoholism, divorce, marriage again and great loss are explored. And then there’s her love of dogs. It has been a roller-coaster of a ride and this passionate, entrepreneurial woman has kept plugging away all the while dealing with an inherited neuromuscular condition called Charcot-Marie-Tooth (CMT) disease, named after three doctors, that has slowly progressed over the years to take away her ability to walk and is now robbing her of the use of her hands. The recipient of 28 awards, medals and honours, Linda is proud to be a Member of the Order of Canada and the Order of Ontario and has been in Canada’s Who’s Who for the past 20 years. Find out why. 
 
Excerpt: “ …With $15 for paper and envelopes and a few postage stamps, I typed letters to editors of all of the newspapers in Canada, telling them that I had a rare disease with a strange name, knew no one else with it, and was looking for information and people to share our concerns and triumphs. My letters were published in newspapers across the country and within a few weeks I had received so many letters from people also diagnosed with CMT, or suspecting they had it, and wanting information that I knew I was onto something. My curiosity was piqued. How many people with CMT were out there? Now I had a real challenge. How many could I find? I went back to the library and photocopied all the addresses for the newspapers in the United States. Those letters went out and, before I knew it, I had more than 350 replies from people all wanting to know more. Trouble was, I didn’t have more to give them. We’d have to learn from each other. And there was no way I could type 350 individual letters in reply. I had to figure out a way to answer them all at the same time. Personal computers were a rare commodity at that time. The solution to my dilemma turned out to be a mass mailing and in the summer of 1984 the CMT Newsletter was born. It wasn’t much – only eight pages, the columns typed, cut out and pasted down and then everything photocopied – but it was something.”