I say yes to the next quarter

Today I am 75. I can honestly say that it has been a long time getting here.  I feel as if it’s a  milestone of sorts: three quarters of a century.

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Me on my 75th

During the last 18 months, I have been writing my autobiography and began at the very beginning when I was just a little kid and my mother noticed that there was something wrong with the way I walked. I have relived everything: braces, high school, boyfriends, surgery, art school, marriage, divorce, many deaths, employment, being fired, marriage again, loving my work and having to quit, university and then starting CMT International. There’s a ton of life in there, 35 chapters of it. I wouldn’t have remembered a lot of it in detail if I hadn’t kept journals from 1966 until now, but I did. Whether anyone will be interested remains to be seen but for some reason I wanted to get it down. My editor and I are working on the last six chapters, I’m picking photographs for it and finishing up the final details. It will go on Amazon sometime within the next 6 to 8 weeks.

I know I’m living on borrowed time, we all are really, and I’m a lot closer to the end than I am to the beginning but I’m going to try to make the very best of the time I have left. My body is slowly breaking down. I haven’t walked in more than 20 years and my hands are getting worse by the year. I tried to turn the key in the van’s ignition today and I couldn’t. I can turn it off but I can’t turn it on and it’s got something to do with the way my wrist won’t work. I guess I won’t be driving alone anymore but I am very lucky that I have my Ron who goes everywhere with me and a couple of good friends who also accompany me for shopping trips or wherever I want to go or they want to go. Sometimes I’m just grateful to get out of the house.

I read something the other day by Ken Gallinger who writes a column on ethics, in fact I tore it out of the newspaper: ”Hope requires neither a cheery outlook nor imaginary friends. It requires only the courage to make ethical decisions in an unethical time – the courage to be kind, to be generous, to be faithful, to be loving.

In a world that too often says “no” to life, hope is the decision to say “yes, dammit, yes” – and then to live accordingly.”

I say “yes” to whatever life, and that includes CMT, has to throw at me. Yes.

From here on it’s like driving into the great unknown but there is one thing that you do know; it will end in death.  That’s one thing we all have to get our minds around as we go into our fourth-quarter. So, to those of you who are there, I say let’s drive down that road together, and say yes.

Till next time,

Linda

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A bunch of hepatica from Ron after his walk in the woods

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Welcome to CMT and Me

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Linda Crabtree

I’ve lived with Charcot-Marie-Tooth disease for 75 years and it has been quite a journey. From 1984 until 2002 my husband, Ron, and I ran CMT International. During that time I met thousands of people with CMT, learned a lot about our condition and published 103 CMT Newsletters. That was then. This blog features life as I live with CMT now. Please look below for regular posts and please subscribe if you like what I have to say. Knowing that people care enough to read my words makes my day. I can also be reached at linda@lindacrabtree.com and I’ve a personal page on facebook. As well, I run CMTCanada on facebook.

 

Your perfect apartment or home

I’m writing my newspaper column this month on accessible housing and I’d like to know what would you include in your perfect apartment or home to accommodate your particular disability. Also please tell me if you use a wheelchair and/or if your hands are involved. You don’t have to talk about there being no steps, wide doorways and lever handles on everything because they are a given but I would like to know the special things you would include because you don’t have them in the place you live in now.

You would be surprised at the number of people who have said they would love to have a small greenhouse. I can’t agree with them more.

I’d love to to hear from you soon as my column is due on Tuesday and I would like to include as many personal recommendations as possible from readers.

Thanks so much for this.

Linda

Pile of pillows eases pain

My husband makes my bed for me every morning.  He laughs when he looks at the pile of pillows I use at night to keep myself comfortable. I understand that they may look a little bit much but he hasn’t any idea what it’s like to live with CMT and, more importantly, to sleep with CMT.

During the day, I am on my scooter seated on a gel cushion with a pillow at my back. I am usually working so I don’t think about my pain very much. But at night, after the television is turned off and everything is dark and quiet there is nothing but my pain. I think that’s why I watch television so long at night. I am usually in bed by 11 but I don’t turn off the television until 12:30 as that seems to be my normal time to fall asleep. If that doesn’t work I take one inhale of medical marijuana and I am  asleep in about 10 minutes. However, the marijuana leaves me a bit drowsy the next morning and if I take it for too many nights in a row depression begins to set in so I have to have to be aware of how often I use it. It doesn’t really help the pain when I’m awake but it shuts my mind down so I can sleep at night and, for me, with sleep there is no pain.

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Pillows?  Pillows!  What would I do without them.  I’ve actually taken a picture of them so you can see the pile Ron makes every morning. There are seven. The first one is a neck roll. If you look inside the long brown pillowcase there is a little orange circle. I gave this to my mother to use when she was in long-term care. The orange circle is her laundry marker. She put the roll behind her neck anytime she was in bed. She may have had scoliosis as I do. Over the years I’ve developed a hump on the back of my neck likely from hunching over a computer for more than 45 years. There really isn’t anything I can do about the hump but a neck roll feels wonderful especially when sitting up in bed watching television.

The second one in the pile is a beanbag pillow that I can stick under my head to hold in higher, put under my neck if I needed and wad it up to hold my Kobo reader if I’m lying on my side reading in bed.

Number three as a memory foam contour pillow that really works well when I’m sleeping on my left side. Don’t ask me why but it is perfect.

Number four is an extra fat pillow I use as I fall asleep. I stick it into the corner of the wall giving it a good punch in the end and jam my shoulder up against the edge of the pillow. The height of the pillow holds my head in position so that my neck doesn’t hurt and I usually fall asleep that way.

Numbers five and seven go to the left of me and hold up my duvet so that it doesn’t touch my skin. It also holds my Kobo horizontally if I’m reading online on my left side.

Number six goes under my knees.  Without it I feel as if my back is breaking.

I don’t know if they count as pillows but I also take two to cold packs to bed. They have been in the freezer all day and one of them goes under my right knee and the other one goes under my right hip while I’m lying on my right side watching TV and getting “settled” as my old friend Karen Roth would say and ready for sleep. Those cold packs hold the key to pain relief for me. I rely on them during the day when the pain gets really bad. I can take cold much easier than I can burn so those two cold packs really sets the stage for sleep.

I also use something called Doctor’s Pain Formula, a roll-on concoction of menthol and herbs, under my knees. It burns for a little while and then the pain seems to subside even more.

At the end of my bed leaning up against the metal support holding the mattress on is another large pillow propped up on its side with a heating pad attached to it horizontally. I can put my feet on or near it. The control is within easy reach. I can’t sleep if my feet are cold. It seems strange that I can lie there with cold packs right out of the freezer under one knee and my hip but when my feet are cold sleep does not come.

My bed his automatic so I put the head up to about 5 inches and do the same with the foot. That leaves me in a hammock shaped bed. I am covered with a simple duvet with a mohair blanket folded over my feet.

As I said, if I am lucky, I fall asleep during a television show.  If not, my PAX marijuana vaporizer is within easy reach and one inhale plus 10 minutes sends me off.

At 75, I feel I am fortunate that I can sleep and that I sleep without pain but If anybody asks why Ron and I never take a vacation I think I’ll show them this post and tell them they’ve got to be kidding!

How do you make yourself comfortable at night? And if you tell me that you just snuggle on your husband’s arm and drift off, I’ll not only be jealous as hell but I probably won’t believe you.

It’s definitely spring here in southern Ontario and the torrential rains have finally stopped. My dogwoods are coming out and the azalea is in bloom.

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Till next time,

Linda

 

The threes

Sometimes I actually believe the superstition that bad, or good, things come in threes. Take, for instance, the last two days: on Saturday night, I transferred into bed from my scooter, watched a bit of television, turned out the light and snuggled into what I hoped would be a good nights’ sleep.  Around 2:30, or was it 3:30, I’m not sure as not all the clocks were set forward for daylight saving time, my bladder woke me up.  I must’ve accidentally leaned on the head button of my adjustable bed control because the head of the bed started to go up and, being in a semi-fog, it took me too long to figure out which button to push to stop it. I ended up with the head of the bed in a full upright sitting position and… no matter what I did, no matter what I pushed, I couldn’t get it to go back down again. What do I do? Of course, I kept pushing buttons but all I got was a soft whirring sound from underneath the bed. Do I wake up Ron? Or, do I silently roll into the living room and try to settle down on the couch? It’s too cold in there during the night when the heat is turned down. That’s not really an option.

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Hauling my legs out of bed, pulling my slippers on and transferring over to my scooter, I quietly, or as quietly as possible, open my bedroom door and drive the 10 feet to Ron’s bedroom door where I hear him softly snoring. Ron, I call gently so as not to shock him, and after several calls he wakes up with “Huh, what’s the matter?” I tell him what’s happened and he gets up, comes into my bedroom and goes through the same routine that I’ve just finished with exactly the same results. The head of the bed is permanently stuck in the up position. What next? I mean by now it’s 3 or 4 in the morning. No one is thinking too clearly. “Get into my bed,” he says. So, I climb into his bed but it is my routine to read myself to sleep and even the backlight from my Kobo reader is too bright for him. He knows he will not sleep even though I turn off the reader so off he goes into the living room, he doesn’t mind the cold, and I read myself to sleep.

Sunday morning I’m on the phone to the company where I bought the bed. The bed is no longer under warranty as it is 10 years old and they can’t have a service man out to me until Monday. I dearly need to sleep in my own bed with my seven pillows, heating pad for terminally cold feet and adjustable capabilities to help me breathe. A call to our friendly handyman sees he and Ron take probably 20 bolts out from underneath the bed frame, releasing the motor and, finally, the bed head goes down. Unfortunately, with those bolts out, the bed also slides back and forth on the frame and will easily slide right off the end of it which is exactly what happened after our friend went home and Ron was making the bed. Because the mattress is pure latex it weighs a ton, so a very apologetic call was put in to our friend who came back again, put a few bolts back to hold the bed onto the frame and let Ron make the bed. It was a crazy 18 hours and it would have been really funny if we hadn’t have been so tired, but thanks to those two terrific guys, I was able to sleep in my bed Sunday night. First thing Monday morning I ordered a new adjustable bedframe – $1250. taxes and delivery included.

Also on Monday morning I was greeted with the news that the $5000 I was awarded in June when I received the David C. Onley Award for Leadership in Accessibility is taxable. In Canada, lottery wins and awards like that are usually not taxed. That wasn’t good news. Being retired and on a somewhat fixed income, anything that makes me pay more taxes takes away from any disposable income I have to live on. Apparently, the government is looking into it but how long that will take is anyone’s guess.

And then to top it all off, the HP color printer I bought last September decided that it was out of toner. If you’re familiar with the cost of toner, you’ve probably just sucked in your breath. Now I didn’t know this but that particular printer is like the old-fashioned strings of Christmas lights we used to have: when one bulb burns out the entire string won’t work. The same thing happens with this printer: if one of the color cartridges is empty or, even just the black one, none of them work and the printer stops. Well, I simply assumed that the culprit was the black cartridge because I have been running off proofing pages for the book I’m writing. I didn’t realize that the printer was trying to tell me, by blinking its little orange light off and on, that it was out of magenta. By the time I twigged, Ron had already gone over to the local stationery store, given up the old black cartridge, which was probably just fine, for recycling and bought a new one for, gulp, $91. But the printer still wouldn’t work with the new black cartridge installed so off he went back to the store to retrieve the old black cartridge and pick up a magenta cartridge for, you guessed it, no, not $91, $87.50. But it still wouldn’t work so I called Hewlett-Packard and got a very patient  young woman on the phone who explained to me that I probably needed to reset the entire printer: pull out the plug, wait for 30 seconds, plug her back in and see what happens. We did that. Nothing. Then she asked me to look at the diagnostics for my printer on my computer and lo and behold both the yellow and the green were also extremely low. By that time, I had dollar signs dancing in my head. Was this printer out to get me? After expressing my frustration, I was offered two replacement cartridges at $20 off in Canadian money. Well, I thought, I have to have them or I won’t be able to print anything so I bit my bottom lip and gave her my Visa number. My cartridges should arrive via FedEx by Thursday if the foot of snow we woke up to this morning, and the fact that they don’t plow our streets for two days, doesn’t stop the FedEx man from delivering. I’ll count on being able to print something by next Monday.

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So, that’s what’s been happening to me the last few days. They are all first world problems, that’s for sure. I am so fortunate and privileged to be able to have a bed much less an adjustable one. I am equally fortunate to be worried about paying taxes. I am lucky that I have enough money that I do pay taxes although not usually very much. And as for the printer, I think the people who make printers should charge more for the printers and less for the toner. We buy the printer once, and I know they count on the fact that we have to continually buy toner, but at almost $320, or somewhere around there, for four toner cartridges, someone is making a lot of money. But again, that’s a first world problem and the people who are starving in Sudan would look at me like I’m out of my mind worrying about a printer.

Do bad things come in threes? Well they did for me but, being an optimist, I’m hoping that good things also come in threes. I’m taking a deep breath, being positive, and hoping that the worst is behind me, for now anyway.

Till next time…spring! Come to think of it, I still have yellow carnations in my bathroom, office and kitchen and that’s a good thing.

Take care of yourself,

Linda

My sanity strategy for the dark months

In the words of Betty White on her recent 95th birthday, “It’s your outlook on life that counts. If you take yourself lightly and don’t take yourself too seriously, pretty soon you can find the humor in our everyday lives. And sometimes it can be a lifesaver.” (Chicago Tribune)

I agree. I’ve just been through an incident with a relative whom I care for very much that has made my blood pressure soar.  I have to not take myself too seriously or I’ll probably have a stroke like my brother did. It scares me silly to think of living the rest of my life with only a few words or maybe only one working arm when I’m already an incomplete quadriplegic. I have to look after myself because I’m the only one who can and I’ve got too much to lose.

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“Get at least 8 hours of beauty sleep, 9 if you’re ugly.” (Huffington Post)

I usually get between nine and 10 hours of sleep the night so I must be trying to undo some bad ugly.  Hey, it’s about those dark circles under my eyes. I always wake up in the middle of the night either because I have to go the bathroom or I’m in pain. In order to go back to sleep, and rather than lie there going over what happened the day before and what I’m supposed to be doing in a few hours, I go to the freezer and grab a couple of cold packs, stick them under whatever part of my old body is burning, then switch on my Kobo reader and read until I can’t keep my eyes open. I’m reading about the life of Ingrid Bergman right now and it’s a fascinating tale.

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“Best thing about being in your 90s is you’re spoiled rotten. Everybody spoils you like mad and they treat you with such respect because you’re old. 

Little do they know, you haven’t changed. You haven’t changed in [the brain]. You’re just 90 every place else.” (People) 

(© 2017 KING)

As my mother went into her 80’s and then 90’s, she’d say to me, “Things are still the same, you know. I don’t feel any different than I did when I was 40 or 50 inside, and I think pretty well the same, I just look older.” I’m glad she said that to me because now, that I’m getting older, I know what she meant. Mom absolutely loved Betty White and looked quite a bit like her.  I know that she watched the Golden Girls over and over and, if she had her way, she would’ve brought several other older widows into her home to live with her after my father died but that was before Golden Girls and mom was fairly shy so asking people to come to live with her just didn’t happen. She lived in a small apartment over the garage in the home that she and my father built for us and always had a bed next to hers ready for anyone who wanted to stay. I don’t think anyone ever did. It must be hell to be that lonely.

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I just heard on the news that Mary Tyler Moore died at age 80.  She and Betty White brought us so much joy and laughter and Betty just keeps on going. I hope she makes 105!

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We’re almost through January so that’s one month down; one out of three months that see me in the house for weeks at a time.  Part of my sanity strategy is to try to get as much work done as possible so I won’t have a great deal on my plate when the ditches start to turn green, the frog start singing, and the trees begin to bud.  I also like to surround myself with flowers but they have to be flowers with very little or no scent because anything that has scent just flattens me.  Just a simple $8. bouquet of miniature carnations from the supermarket will see them spread throughout the house: in the kitchen window, the bathroom and besides my computer in the office. There is yellow alstroemeria on the living room table and four phalaenopsis orchids blooming in my bedroom. I could get through winter without flowers but they certainly make it easier and so does Betty White and memories of Mary Tyler Moore and my wonderful mother

What’s your strategy to get through these dark, cold months?

Take care everyone,

Linda

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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!

 

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