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.

 

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

 

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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