A singular crow caws through the bare tree-lined alley that is our street. It’s 7:43 in the morning and I’m waiting for the nurse to come from the lab to take a fasting blood sample. I’ve been awake since 5 and Ron woke up around 3 when a smashing great thunderstorm passed through the Niagara peninsula.
November has been full of events and rewarding work. A couple of things I can think of are the mailing of a kit of information regarding my Ontario Trillium Foundation grant. Two hundred envelopes with a DVD I produced called Access is More than an Open Door: Accessible Tourism on Niagara, a list of basics to make your hotel or lodging accessible, two booklets on the Access for Ontarians with Disabilities Act and our Customer Service Standards, plus a letter from me, went out courtesy of The Niagara Parks Commission. They had promised to help with my project, the one that saw Eileen and me work to update the AccessibleNiagara.com website for 22 months, and they did.. Their help was wonderful because I was pretty well burned out after almost 2 years of working on the site.
I knew going in that I was asking for a lot more pain. Doing computer work uses a side of my brain that let’s me feel pain. Creative writing, painting or even reading a book or newspaper doesn’t. My hands also got a lot worse during that time. My right has about 15 per cent use and my left about 50 per cent. I’m also slowly developing wrist drop. To be totally honest, I don’t think I’ll ever take on another project like that again. Both Eileen and I worked long hours but we’re proud of the work we did and the site looks really good.
Being an optimist, I know hard work like this always brings something good and I was able to use the DVD as the opener for a small presentation I did to our mayor, city planner, city engineer and economic and tourism development officer who can change things at the City of St. Catharines.
The story behind the presentation goes like this: Eight years ago an advocate friend in New York City who has the same Charcot-Marie-Tooth disease as me, sent me some literature on a campaign they had launched to try to get rid of one step into commercial public buildings. The campaign was fairly successful and I’ve never forgotten it. I decided it was time to do something as our century old downtown area is soon to have a spanking new performing arts centre in it and the Brock University
School of performing and fine arts will also be located just below the embankment that is the main street. St. Catharines was a canal town way back and one of the old canals ran right through what is now the back of the downtown area. The main street, St. Paul St., was an old winding Indian trail and all the old buildings wind with it and the half on the north side are all built with their backsides two or three stories down the hill towards what was the old canal so the barges using the canal could deliver wares directly to the stores.
My sister, Kathie, and I spent a blustery cold afternoon downtown several weeks ago taking photos and measuring steps. I’d say between 45 and 50% of the entrances have a step of at least 3” which makes them impossible to get into if you’re on a scooter or using a wheelchair.
The meeting went well I thought and Diana Lecinski, the co-ordinator for the Mayor’s Advisory Committee on Accessibility for St. Catharines will be working with me to get what we need to try to move this along. The committee’s mandate is municipal buildings and their accessibility but we need to make the downtown area accessible as improvements are being made. The City is offering Community Improvement grants to people who want to improve the facade of their building. The grant is not attached to access. It should be. We’re working on it.
A month or two ago I talked to my breathing specialist about my weight and he suggested a weight loss program, the Wharton Medical Clinic, for people who have at least one co-morbidity factor. I don’t move much and I have CMT and asthma. You also have to have a BMI over 27 I believe. Mine is 29. I’m not classed as obese but overweight.
Last week my sister drove me over to Burlington, about 60 miles from here, for my initial two hour visit. They do tests, thus the blood test this morning, and you are counting calories, carbs, etc. It’s not going to be easy because I don’t move much but I have to give it a try. I‘d like to go into my 70s with less weight on my stomach and behind and less fat around my internal organs. And, my shoulders are starting to give out trying to lift 169 pounds about 20 times a day. The clinic is funded by the Ontario Health Insurance Program (OHIP) so I don’t have to pay. A gift like that shouldn’t be ignored. I’m committed to making it work the best way it can for me. It’ll likely take a year to lose 20 pounds but that’s okay. Food isn’t as important as my health at this stage of the game. The irony is: I have to eat at least five or six times a day now when I used to eat only twice. Eating less but more often means I’m hungry when I never was and I’m also a little warmer. And, I seem to be always eating. But, I feel that I owe it to myself to do the responsible thing and lose the weight. Having CMT isn’t going to get any easier as I get older and I’d like to get older.
A couple of weeks ago I finished a painting, Silver-tongued Snow Suckers, or Sippers if you want to sound a little more delicate. It is another triptych, three 12”x12” canvasses painted to look as one but they can be hung separately. It is just a fantasy but it was fun. It hung in the last St. Catharines Art Association show with the other two triptychs I’ve done. I’m painting what I like to do not what I think someone else will like. It has to me for me now. If someone like it, that’s great. They are all for sale but they also look great in my meeting room.
Finally, I found some lovely phalaenopsis orchids for sale at Walmart last week for only $11.98. That’s really cheap and they were fresh and happy and most had a lot of buds. I wanted to buy them all because I know that being a plant at Walmart is a tough job. If you’re watered, you’re lucky. Usually you just die if no one takes you home. The trouble with rescuing plants is that it encourages the sellers to buy more and abuse those as well. I chose one gorgeous mauve one that looks terrific with my others. I now have 18 and six are in spike, one in bloom. It won’t be long before my orchid shelf is a riot of gorgeous color…and it’ll stay that way until spring.
It has been an interesting month and it’s not over yet. I’m off to the One of a Kind Art and Craft Show in Toronto on Thursday with a painter friend. There are 800 artists and craftsmen exhibiting there. She’ll be walking all day but it’ll be exciting and fun. How I wish I could flip down a little seat on the back of my scooter and let my friends take a load off their feet when they get tired.
It’s noon, the sun is shining, the blood sample has been taken, I’ve answered several e-mails from people wanting help and talked to a woman who wanted to find a wheelchair accessible van driver that would take her brother, who’s had a stroke, can’t speak and uses a wheelchair, for a drive around the city. Now there’s a business for someone who could pick up a second-hand wheelchair van.
Ah, give it a rest Crabtree! Time to eat again.
Bye for now.