Let me count the ways? The ways I use to find people who have CMT in my area of southern Ontario that is called the Golden Horseshoe.
First, I have to say this: I am never so comfortable as when I am in the company of my peers. It doesn’t matter that I can’t walk or stand or pick something up, hold my food like others do or even project my voice. You get me because you know you could easily be me, if y0u aren’t already, and I love you and get you because of it. You could say we understand each other in a very fundamental way right from the get-go.
I live in St. Catharines, Ontario: a city of about 130,000 people in the Niagara Region that includes 430,000 people on the south shore of Lake Ontario. St. Catharines was once a huge General Motors city, and we still have a large GM plant here, but now our region is known more for our award-winning wines, our innovative college and university programs and, of course, Niagara Falls. And, our brew houses are beginning to take off big time as well; Niagara College even offers a course for budding brewmasters.
The Golden Horseshoe refers to the area from the Niagara River that slices through the Niagara Peninsula from Lake Erie to Lake Ontario in the east to Hamilton and Oakville in the west and the border of Toronto in the north directly across the lake from us.
For the last couple of years, I have wanted to pull together a group of CMT people in the Golden Horseshoe area for a social meeting. However, I have never given it the time needed to find enough people to make up an actual meeting with more than four or five. This summer I’m doing just that and I have made a vow, and kept it, to reach out every day, one way or another, be it through online social media, radio, television or newspapers and even snail mail to try to locate people with CMT in my area.
The first thing I did was find a venue that was totally accessible and fit the picture I had in mind of where I wanted us to meet. My husband, Ron, and I looked at four places: either the ceilings were too high, and you couldn’t hear your own voice much less that of someone else, or the place looked grungy, or dark, or too big or too small, or the cost was simply out of my range.
Finally, and I should’ve thought of this in the first place, I called my good friend Elisabeth at Heartland Forest Nature Experience in Niagara Falls. I know this place well because I was the accessibility consultant when they built it. Elisabeth told me to come down and look at the Forest View room because they had new folding doors across the grand hall and this room was perfect for meetings. Ron and I drove the 20 minutes to the Falls, parked in their accessible parking area, entered through their automatic gliding front doors and, TA-DA, the room was perfect. The first thing I noticed where the baffles hanging from the ceiling and I drove my scooter to the front of the room and asked Ron to stay at the back. Could he hear me clearly? When he answered yes, I knew we’d found our meeting place. The huge green plants, the floor-to-ceiling windows looking out into Heartland Forest and just the overall ambience of the place made me smile and I knew this was it. We can pull four or five tables together and be able to see each other as we talk. Perfect! Plus, I knew, because I have worked on all of the washrooms there, that there are at least three family-style, fully accessible washrooms just a few yards from the meeting room and there’s even a washroom with an adult change table plus another one with ceiling track and a lift available.
After the room was booked I set myself the task of locating people in my area who have CMT. During the years Ron and I ran CMT international [1984 to 2002] I knew thousands of people who had CMT but only six or seven in the Niagara area. Now, 14 years later, some have moved and some have died but I was able to start with four or five and to date have found 15 who have said they would love to come to a meeting and socialize with others who have CMT. I am hoping for 20. If I find more that will be wonderful.
I remember when we had conventions back in the CMT International days and were hosts to close to 200 people at a time. The conventions were wonderful and I met a huge number of terrific people but I never had much time to talk at length to anyone. I’m thinking that now smaller is better and having time to talk to each other will be precious. Yes, guest speakers can teach us a lot but we can also teach each other a great deal; I know this for a fact.
If you live anywhere within the Golden Horseshoe from Fort Erie on Lake Erie to the Toronto border, or even in Toronto, and would like to come to the very first CMT Niagara support meeting, Sunday, September 18 from 1 to 4 PM at Heartland Forest, 8215 Heartland Forest Road [formerly Kalar Road] in Niagara Falls, ON, please contact me through this page or at email@example.com or 905-685-0496 during afternoons. In fact, it doesn’t matter where you live, if you’d like to come to the meeting, and perhaps stay a few days in our beautiful Niagara Falls, you will be more than welcome to join us. And, If you’re looking for what you can do while you’re here and for accommodations, please go to AccessibleNiagara.com where you can find everything you need to spend a few day with us.
It has been so hot here in St. Catharines during the last couple of months that I can rarely go out without experiencing a lot of pain so working on my book and hunting for people with CMT has become my summer mission. And, I guess it’s how I do my part going into the CMT month of September. I’m excited about the meeting and for this old gal, that’s really something.
Till next time,