Thirty-six years later

1980: A New Year’s Eve to remember
By Linda Crabtree, The Standard

Friday, December 30, 2016 7:26:44 EST PM

 


It was just nine lines in the St. Catharines Standard, under Marriages, on Jan. 2, 1981, but we’ll never forget the story behind it.

Graydon Book and I met in 1977 through a personals ad I put in The Standard, where I worked. I was divorced and he was a bachelor.

We got to know each other over a period of three years, and I eventually suggested we marry as it seemed as if he was never going to get around to asking.

We settled on a spring 1981 date until he, ever frugal, suggested we tie the knot before year-end as the tax rules then allowed us to claim the other as a dependant. The justice of the peace, Don Swift, was available on New Year’s Eve. His office was on the second floor of the Church Street police station.

Dec. 31 began with wedding nerves, but we both soon settled down. I dressed in a soft grey ensemble that included a silk blouse, wool slacks and velvet jacket. Graydon was handsome all in browns. He was 43, I was 38 with a progressive neuromuscular syndrome, Charcot-Marie-Tooth disease (CMT) that was slowly taking away my ability to walk.

There had been an ice storm the night before and the parking lot of the LCBO where we stopped to buy wine was like a skating rink. I stayed in the car.

The next stop was at the studio of a photographer I knew from the paper for a formal wedding picture. My pink rosebud corsage and Graydon’s boutonniere were gifts from people I knew from the paper.

Around 2:30 in the afternoon, Grace, Graydon’s 79-year-old mother, who lived kitty-corner from the police station, and Graydon held me up as we slipped and slid down the street and up the ice-covered steps to our appointed destination.

Inside, we asked directions to the office of the justice of the peace and were told it had closed at noon.

Disheartened, I asked her to call up — and he answered the phone. He had let his staff go at noon.

“Take the elevator up,” she said, “and don’t go down, that’s where the cells are.”

We all watched as Graydon pushed the ‘up’ button.

My mother and my sister, Kathie, arrived and within 20 minutes we had paid our $15, were married, had signed the register and were on our way back to the ice-covered streets.

I had arranged a dinner at our favourite Italian restaurant but was told it had to be early because they were totally booked for New Year’s Eve. I reserved for 5 p.m.

Crab legs, shrimp marinara and lasagna all disappeared quickly and our wedding cake was a double-layer chocolate with green and white icing Kathie had managed to smuggle in.

Grace excused herself to the ladies’ room and didn’t return. My mother went in after her. Grace was feeling nauseous — she’d never had shrimp before — and mom said she thought it had all been too much for her.

Graydon paid the $114 bill, we all packed up, and just as we were out the door mom and Kathie showered us with two bags of white confetti.

After delivering mothers, we went home, watched a bit of TV, kissed good night and, exhausted, fell asleep.

The entire wedding cost us something like $185 and yes, we claimed each other as a dependant from our income tax and both got the deduction.

This New Year’s Eve, we’ll celebrate our 36th wedding anniversary quietly.

It hasn’t all been easy for either of us. I can no longer walk and my hands are extremely weak. Graydon now uses his middle name, Ron. Throughout the years we’ve changed and grown. He is what you might call a domestic god — responsible for everything in our everyday lives, and he also looks after me. I write, and am an advocate for people with disabilities.

Ours is not an ordinary marriage, but we have made it this far and every New Year’s Eve is special because it marks another year we’ve had together and our hope that we’ll have more. And we’re still frugal.

Happy New Year everyone!

 

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Greetings

I can’t let the day go by without wishing you all a happy Christmas or whatever you celebrate.  Don’t let your CMT stop you from being as joyous as you can be. You are alive, your potential is as limited as your dreams. Go for it!

Ron and I celebrated yesterday with a visit to the Niagara Parks greenhouse (below), a turkey dinner out and then a snooze after the football game. Low key, you bet, but it suits us.

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Thank you for your readership.

Cheers to all!

Linda

 

December roses, pearls and praise

It’s starting to feel like winter here in Southern Ontario and Ron spotted our first snowflakes this morning. We’ve put the snow tires on the car and we’re ready for anything mother nature decides to dole out to us during the next three or four months. Personally, I’ll just hunker down and work on the final details of my autobiography for the next 16 weeks. This blog post is proof that I procrastinate. However, I promised myself at least two hours of writing this afternoon. I use a mac dictation program, any more than two hours and my voice gives out.

On the way in from a trip to the grocery store yesterday, Ron plucked the last rose from our garden and put it in a crystal vase for me on the kitchen windowsill where I couldn’t help but see it. I love the rose but his message to me by doing what he did warmed me right down to my little CMT paralyzed toes. When he goes for a walk in the spring he brings home wildflowers from the trails he loves. Last summer he brought me home a small amber bottle that was used to feed medicine to a calf and was discarded in the field behind the cemetery where we have our plot.  It’s way out in the boonies and no one bothers him if he wants to wander around the fields out there. The little things mean a lot to me; he’s thinking about me as he’s walking, and I am thinking of him as he is out there hoping to God he doesn’t fall in a hole and break something. That’s why I always make sure he has our cell phone with him. If he’s stranded or hurt out in the fields we could likely find him by checking the phone.  He’s almost 80, and thankfully he doesn’t do much backwoods walking anymore but picking roses for me in December? That he can still safely do and I love him for it.

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I’ve never done this before but I know there are several hundred of you who read this blog and I thought I’d ask if anyone would be interested in a beautiful double string of cultured pearls I have that I can no longer wear. They are 14 to 15 inches long and now, in my later years, I am more comfortable with something longer than that. I have a full insurance appraisal for them that I will put here and ask that if you think you might like them email me at  linda@lindacrabtree.com.  I’ve only worn them once and they are too beautiful to just sit, year after year, in a box. If you wear them with the large mabe pearl clasp (mabe pearl is different from a traditional pearl in the way that it is grown and shaped. Regular pearls have a round shape, but mabe pearls have a half-spherical shape caused by the way the pearls are grown on the inside of the pearl oyster’s shell rather than within the mollusk’s body.) to the front they are stunning. I’ve only worn them once and that’s the way I wore them.

Elsie Yeung, G.G., at A Division of Rikki Jewellery, 21 Dundas Sq., Suite 608, Toronto dated August 13, 2002: one  2–rows of necklace [14 to 15”] of 97 cultured pearls set with 1 – 14 karat (stamped) yellow gold mabe pearl clasp. They are quite round, measuring from 6.50 mm to 7.00 mm. They are almost round, have find lustre and are well matched. They are medium spotted and have a thick translucent coating of cream colour.
Total weight of items: 57.50 grams.
Suggested insurance coverage: $3, hello use500.00
I paid $1,200. plus tax $1.380. and would like $600. Canadian, $500. U.S. Photo below.

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Thanks to everyone who suggested remedies from my spider bite. You are truly a caring group of friends. Ron bought several boxes of spider traps and placed them around my bedroom. I don’t know if that’ll work or not but at least I feel a little more secure. The swelling and redness in my face has gone down a great deal and a little dab of yellow concealer goes a long way to even up the blush on both cheeks.

That’s it for now, I really do have to get to my writing. I promise.:)

Till next time,

Linda

Facing up to Texas…Help!

Last Sunday morning I woke up and noticed a little bump on my left cheek. The phone rang and and after talking for about 10 minutes I went into bathroom to wash my face. I noticed the bump was more like a dent and I figured it was from holding the phone  up against my cheek. However, as the day progressed the bump became an angry, red blotch that ran down my face and up towards my eye. The next morning the face in the mirror was pretty alarming. The left side of my face was swollen, very red and there was a pocket of fluid there that was hot and hard. Gads!  I made an appointment with our GP for that afternoon and he suggested it was simply an insect bite, likely from a spider. Simply, gads!, I was starting to suggest that Ron call me Willy Lump-lump. The doc suggested I take Benadryl and gave me a prescription for Biaxin, an antibiotic, should it become infected.

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By Monday night my left cheek was very swollen and the swelling was going up into the tissue surrounding my eye. The photo was taken Monday.

By Wednesday it looked like the state of Texas on my cheek and my eye was almost closed shut.

Yesterday, things start to cool down and by last night Texas had lost its panhandle that formerly drooped downto my cheek.

This morning I can open my eye and the swelling has gone down considerably but I am wondering if any of you know anything I can use to decrease the swelling even further and get back to normal. I am one of those people who, when bitten by a black fly, takes forever for the itching, swelling and oozing to go away….like a month! I don’t want to look like I do now f0r another three weeks if I don’t have to. I have been using a neem oil stick on the skin and it takes the itch factor down considerably. The Benadryl puts me to sleep within 20 minutes of taking it.

If anyone has any suggestions as to how to take the swelling down and the redness away even further I’d appreciated it. This is a first for me and I don’t quite know how to deal with it. Also, if anyone knows any way to get rid of spiders, I am all ears. Something bit me while I was in bed and it makes me cringe to think that whatever it was, is still there. In the past I have shown you the pictures of orchids I grow under lights in my bedroom. My most recent acquisitions are from Florida, I think, and there are very different spiders there than there are in Canada. It is entirely possible a spider came in with my newest orchids.

Does anyone know of any kind of bait I can put out or trap for spiders as I don’t want to spray the bedroom being very allergic to any kind of spray.

Thank you, my friends, f0r any suggestions you can give.

Linda

p.s. – One thing I’ve learned from this is that the world will not dissolve if I don’t spend the afternoon at my computer. Thanks, Benadryl.

Welcoming the beauty of November and finding Ann

In my last post I mention that I was looking for Ann Gasser who is one of the most prolific and funniest poets I have ever met. She also happens to have CMT and is into her nineties but you never know it, because she’s still a going concern. One of you kindly gave me her email address, which I had lost, and I asked her if I could use several of her poems for my book, which she agreed to, and she said, “I am still writing, and I edit two publications for the Pennsylvania Poetry Society, Inc. One is an
illustrated online journal called PENNESSENCE which I have been doing monthly since September 2012. It goes out to members, and anyone with Internet access can read the issues by Googling NFSPS.com and clicking STATE LINKS PENNSYLVANIA PUBLICATIONS PENNESSENCE

“My hands continue to get worse, and of course my legs are not reliable—if I stand they could collapse without warning as happened six years ago and I broke both ankles. Now I slide from power chair to wherever, and the only time I stand is to pull up my pants. You can bet I have my chair directly under me when I do that!

“My brain still works fine, I manage to live alone, and all in all, I am in good shape for a ninety-four year old. I guess I still have a quirky sense of humour which comes out when I write light verse. I have well over 3500 poems on my database, (over 900 of which have won awards), and lots more that have never been catalogued.” Here is
a sample.

APRES SKI

Oh pity the poor guy who skis,
falls and breaks both his arms, both his knees.
Wheels may get him about
here and there–maybe out,
but the bathroom’s not mastered with ease.

And he may have a lot he can do,
watch TV, read a long book or two,
but how can he function
each time there’s compunction
to make a quick trip to the loo?

Our advice he may take if he will,
but these words will most likely be nil:
Sell the skis, try aerobics,
join exercise phobics
and don’t go near snow on a hill.

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My November roses – the last of months of beautiful blooms

Now in another direction, I don’t know about you but after four or five days in the house, and sometimes even a week or more, I go little still crazy, my pain gets worse and I start to get really antsy… I need to get out and I really need to get out into nature.

Something was wrong, and the stress of delving into times past for my writing which includes several traumatic experiences involving death, a family matter, and, believe it or not, the American election (watching the two candidates throw hate and talk over each other plus all of the negative advertising on every American channel) had put me in a real discombobulated mood. Yes, I know I’m Canadian, I don’t have to worry if one of the candidates will eventually run Canada but whatever affects the United States spills over into Canada especially when you live only 20 miles from the border. Over the months I have sensed ugly divisions forming that I personally have never seen before in that great country.

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So, Ron in his wisdom asked me if I’d like to go out in the country, and go we did. It’s only about 20 miles from home but it’s a beautiful provincial park with a short trail for people in wheelchairs and a waterfall that has just recently recovered from our summer drought. I could feel myself relaxing about 20 yards into the woods when I started noticing the colour in the trees, the patterns of the dry weeds, the cloudless deep blue sky and the gold pine needle covered floor.

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We took pictures, we talked, but mostly we just walked (rolled), taking in the absolute beauty around us. Most people would say it was nothing special but, in reality, it was raw nature many millions of years old. Indigenous peoples had lived here, settlers had homesteaded here and, before that, dinosaurs grazed here. It made me feel small, not insignificant, but small, and the world felt big and my worries really not all that important.  The feeling that there is so much more to the world than just my immediate concerns, the concerns that were pulling me down when I’m in the house for long periods of time and self absorbed in my work, bouyed me up. “It’s not that important!,” it kept saying to me, “It’s not that important.”

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Gray hair and all – I’m getting used to it. 

Yes, I have every intention of finishing my book, I only have two chapters to go, but I feel so good this morning that I know getting out of the house and being immersed in nature is a far better tonic than anything else I could possibly do for myself.

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Our humble abode with dogwoods (left) and Japanese maple (right) on fire

One of the chapters of the book is going to list various organizations across the world working on CMT or working with people who have CMT and I’m going to ask if you know of any except for the two in the United States, CMT UK, and the facebook pages CMTUS, CMT Canada and CMT Niagara. And, if you’ve use any kind of gadget or anything that has really helped you cope with your CMT, would you please let me know?

 

So, in a much better frame of mind, I am going back at chapter 31 and hope to have it finished by the weekend. I’m going to put some pictures we took yesterday here so you can see what I’m talking about.

I hope not too many of my American readers are suffering from PESD (Post Election Stress Disorder) tomorrow. I don’t think an election has ever affected me like this one and it isn’t even my country. Strange times!

Till next time,

Linda

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p.s. – Here’s a mystery for you. In the woods there is a shack used to house a car on occasion. On the front of the building is a picture of a girl. Why is it there? Who is she? She looks something like Shirley Temple to me. Strange and we may never know but it’s one of those little things you can’t help wondering about as you make your way up the rough leaf-strewn roadway into the woods. Any thoughts?

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October mumblings

“When you arise in the morning, think of what a precious privilege it is to be alive – to breathe, to think, to enjoy, to love.” –  Marcus Aurelius

Even though I have to drag my legs out of bed and then drag my whole body over to my scooter seat after putting on my slippers with hands that will barely hold the weight of one, I am still extremely grateful that I am alive and able to drag my legs and body about.

When I hear my husband, Ron, moving about in the morning, I’m also very thankful that he is alive and still loves me. At this stage in our lives our greatest fear is that we will lose one or the other of us.  We know it is inevitable that one of us will go first and I am hoping it is me because there is no way on earth I want to breathe without him.

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Now for something not quite so daunting: someone asked me how the CMT Niagara support meeting that I held in September went and I have to tell you that I feel it was a success even though I had close to 30 people who said they would come and only half of that number did.  However, we filled the three hours easily by going around the circle and asking people to talk about their CMT and their lives. It was truly wonderful to hear people talking about what they have accomplished in spite of CMT. We also had a young man aged 11 or 12 with us and several people brought delicious homemade cookies, so many I was even given some to bring home.  I gave out some questionnaires and quite a bit of literature on CMT and I also put up a CMT Niagara Facebook page to go along with our CMT Canada page.

I get as many people from around the world asking to join CMT Canada as I do Canadians but CMT Canada is just for Canadians to share information about what’s going on in Canada regarding CMT. Canada has such a small population, only 36 million, mostly spread out along the border to the United States across thousands and thousands of miles from the Atlantic to Pacific that it isn’t easy for us to find each other but slowly people are finding CMT Canada and sharing information.

I hope to have another CMT Niagara support meeting next spring or perhaps a barbecue next summer for anyone in the Niagara area with CMT and their families. I’m not getting any younger and holding a meeting takes a lot out of me and when people say they’re coming and don’t show up it means that I’ve done a lot of work for nothing. My friend Lynda accompanied me to give things out and move about as I can’t.  She is veteran of many, many committees and boards and gave me some sage advice: “Plan for many, expect few.” Lesson learned.

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One of the readers of this blog told me that she enjoyed seeing inside my home and I’ve taken a few pictures of my bedroom where I grow a few orchids under lights, keep my collection of strange and animated dogs, (I’ve just found a tiny metal poodle at an antiques show – poodles are hard to come by – the hound, above, is sorrowful, to say the least) and watch a lot of PBS and, sometimes, sleep. It is also my habit to read after I wake up at night to use the urinal. I don’t go to the bathroom because it would wake Ron up and he has a terrible time getting back to sleep so, in the privacy of my own bedroom, I use a very lightweight urinal and he empties it for me in the morning.  However, after taking care of what woke me up, rather than lying there trying to turn my mind off, I open my Kobo reader and read for about a half an hour, usually between 4 and 5 a.m. I’ve read several hundred books in the wee hours of the morning and am now almost finished Sophie’s Choice. I’ve have never seen the movie but want to after reading the book.img_1876

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Speaking of books, I am just about to start chapter 31 of my autobiography (CMT and Me) and calculate that I probably have three or four more chapters to go and then I can start the editing stage. I have set a deadline to have it up on Amazon by my 75th birthday on April 16, 2017.  I’ve been at it now for more than two years, and am writing almost exclusively using iSpeak on my Mac computer as my hands have really deteriorated over the last year and a half. My editor says it’s a good read, so I’ll keep poking along. I am enjoying the journey, for the most part.

Does anyone know how to contact the CMT poet, Ann Gasser?  I’d like to use one of her poems in the book and need to contact her about it.

Wishing all of you good health and please consider getting a flu shot.

Till next time,

Linda

 

How do I love thee?

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.

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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.

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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 linda@lindacrabtree.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,

Linda

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