The Inside Scoop: The Real Story Behind Bethany’s Book, “How Should a Body Be”?

One day about 7-8  years ago, I get this random call from a young woman from Michigan. She wanted to volunteer with the CMTA. “Sure!”, I said enthusiastically. “We are always looking for volunteers-ALWAYS!”  Now, compared to my loud, overly animated voice and my quick speaking conversational style, my new friend, Bethany, spoke slowly, methodically and in whispered tones. She actually takes a moment to think before she spoke – a new concept for me.

She wanted to volunteer for CMTA but she was about to have foot surgery, and she assured me that she’d get back to me during or after recovery. I had no expectations, but she did indeed get back.  From this day forward, our friendship blossomed. I crept into her life like mold, and now, she’s never getting rid of me. We are stuck together like velcro.  She moved to London last year, probably hoping the distance would give her some space-WRONG. We talk frequently, Facebook tons, and I’ll be seeing her next week in Miami.

Following her then boyfriend, Josh,  to the Bay Area, California (a joke you’ll understand once you’ve read Bethany’s book), we got to know each other well. She really is not as quiet as you think when you first meet her. In fact, she’s quite chatty and holds her own in debates. From a shy, soft-spoken teen, to a master in digital communications, a successful fundraiser and a moving motivational speaker, Bethany has become a well known and loved figure in the world of CMT.

At 25, Bethany has published her first book, How Should a Body Be? which gives an intimate, honest and heartfelt portrayal of what it is like growing up with different abilities.  She’s a wonderful writer and I am in awe of her strength and “determination”  (I prefer the word stubbornness, but  Bethany’s not thrilled with that word). Here are my thoughts on Bethany’s memoir:

Bethany Meloche’s thoughtful memoir—“How Should a Body Be?”— recounts the life story of a strong-willed young woman with a never-give-up, never-look-back stance to being alive in this world. In a culture that places so much emphasis on physical perfection, many are dissatisfied with their appearance and obsess over achieving unrealistic standards of beauty and fitness. Compound these everyday societal pressures with a progressive neuromuscular disease like Charcot-Marie-Tooth—which causes foot deformities, muscle weakness, tremor and breathing difficulties—and growing up with confidence and assurance becomes that much more arduous.

With wit and humor, Bethany relates the challenges of living in a world where people’s well-intentioned, but short-sighted commentary and feedback inadvertently amplify her feelings of self-doubt, uncertainty, and isolation.

Driven by a lust for knowledge and unquenchable curiosity, Bethany lives each day to the fullest, making her story both unique and inspirational. It would have been easy for Bethany to surrender, to lose hope, to fall into the depths of despair and depression, but by turning her anger outward she discovers strength, willpower, connection and success.
“How Should a Body Be?” is a personal journey toward self-acceptance, healing and living life to its fullest, despite apparent limitations. Mature beyond her years, Bethany offers nuggets of wisdom to be shared, pondered and cherished. Honest, truthful and profoundly insightful, this book is for people with CMT, their families, their friends and anyone who struggles with self-image, confidence and the fear of being seen. This is the best book to date on growing up with physical differences, obvious or not.

 

Bottom line: Buy it. It’s that good. Buy it here:  http://amzn.to/2lBC9cz

Still not convinced? How can you say “no” to this cute face?

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My Name is Not Grace

Dedicated to all my friends who have a love/hate relationship with shoes.

“I love those shoes….OMG – they are sooooo cute!” enthusiastically commented an unknown, young, attractive, athletically built woman.  I looked around, certain that she was addressing someone behind me or outside my range of vision.  Mouth hanging open, I stood stunned, realizing she was referring to my shoes, my size 12 purple and aqua blue Solomon running shoes. Managing to spit out a “Thanks!” her casual compliment rendered me speechless for all of about 5 minutes (which seemed like an eternity…..to me).

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Above: The Complimented Shoes 

 

The last time someone actually told me they liked my shoes was back in September of 1967. I was 5 and my mom had just bought me a pair of black, shiny patent leather shoes. The compliments I received! Overjoyed with my new shoes I ran, jumped, danced and then, never fail, I slipped on our hardwood floors, landing head first into the electric radiator, at the base of the wall. As blood gushed from the gash on my forehead, a cloth was applied to the wound where it stayed until we reached the ER. The stitches left a small scar above my left eyebrow, a foreboding symbol of future foot-related misery.

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Above: Me, Age 5, Patent Leather Shoes

Nevertheless, I had not yet received the memo about imminent foot woes, so when my mom had to order new and very expensive shoes and winter boots from a shop in Montreal because my instep was so high, I thought that I was really something special.  Although I hadn’t a clue as to what a high instep actually was, I didn’t care. I felt like a princess who needed the best of what money could buy, and from abroad, to boot (a 2-hour drive from my hometown of Burlington, VT).  “I could get used to a life of royalty-Queen Elizabeth,” I imagined, my illusions of grandeur already a problem at such a young age. The thrill of ordering our butler around, “Andrew, Caviar, please! “or “I’ll wear the dazzling rubies this evening, Alfred! Snap, snap…I haven’t got all day!”

As I grew taller, my feet inevitably grew longer. By 8th grade, I was at least 5’7’ and my feet already demanded a size 10 shoe. Long-limbed and gawky, I looked like a baby flamingo and walked like a newborn giraffe learning to take its first steps. Between the giraffe and the flamingo, I must have looked a lot like a fliraffe.

 

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Above: Baby Flamingo

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Above: Baby Giraffe

 

 

 

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Above: Fliraffe (a giraffe with baby flamingo feet)

 

If my parents had named me Grace, I would have been a laughing stock! It was bad enough with older brothers who had their own nicknames for me: clumsy, klutz, horse, big foot, clod, butterfingers, spazz, etc. I was always bumping into something and spent a  lot of time on the ground, either cleaning up something I had spilled or nursing wounded knees.

If you have CMT, you may be able to relate to my story and have a few of your own. Does this sound familiar? I fall over air, get caught up in my own feet, trip up stairs, run into furniture and constantly drop things. Here are just a few concrete examples which come to mind: I dropped my cell in public toilets, twice, got my bike tire caught in the rails of a tram, and just simply fell over onto my side in the middle of a busy plaza, tripped on nothing and everything, sprained ankles, broken toes and sported many, many bruises. And this is just the tip of the iceberg, as the list is way too long and the catastrophes, too many to count.

Many of my friends in high school and college wore high heeled shoes for events. Not me. At 5’9’’ I was already taller than the majority of other students, especially the guys. Secondly, a size 10 high heeled shoe was impossible to find and third, I would have broken my neck.  And have you ever found a sample size 6 or 7 shoe at the store, and when they brought out the size 10 or 11, it looked nothing at all like the size 7 you had already fallen in love with?

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Above: The shoes I wanted (floor model,size 7)

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Above: The shoes they brought out (size 12)

When I lived in France, the saleswoman wore a look of shock and disgust when I gave her my shoe size. As if being forced to wait on the Hunchback of Notre Dame, she nervously whimpered, “Madame, s’il vous plaît, look in zee secshun for zee man,” and she pointed in the direction of the men’s shoe department. How humiliating.

By adding padded and ultra cushy orthotics, my shoe size increased by 1 or 2 sizes!! On my body, an 11 or 12 shoe is not feminine. It just isn’t. I walk more like Herman Munster than a tall woman with long legs and big feet.

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Above: My body and feet

So when my new best friend complimented me on my “cute” shoes, I decided to take the compliment and wear it with pride. And, honestly, I am just grateful to be able to walk. Some are not so lucky. So, I say screw femininity.  The older I get, the less I care about what people think, especially if it is negative. Now give me positive commentary, and that my friends, is a different ball of wax.

Phobias: I’ll Tell You Mine, If You Tell Me Yours!

That hairy tarantula crawling around the ranch the other morning would have, by definition, freaked out anyone who suffers from has arachnophobia, a fear of spiders. While it was basking in the sun behind a tire’s worn treads, I so wanted to put it in my palm and pet it, but before I knew it, someone had scooped it up into a bucket and displaced it into a secluded grassy area, away from me and the lethal parking lot.

And come to think of it, one of the last times I impulsively picked up a feral, furry animal, it bit me. Thankfully, that scraggly rat did not have rabies, or I would have been whisked away to the nearest hospital receiving treatment for rabies which, at the time, included 21 injections, with very long needles, into my 10-year-old abdomen.

I am not afraid of 8-legged creatures, but after reading yesterday’s news, I just might reconsider my position. “Invisible Bugs In Kansas City Are Jumping Out of Trees to Bite People, read the headline of the Wall Street Journal.  Apparently, it is oak tree itch mite season in Kansas City, MO and these microscopic arachnids are pouring out of trees and landing on people, making their lives an itchy living hell. Arachnophobes-beware! Don’t hang out under oak trees in Missouri.

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Oak Tree Mite

The next news story, Creepy Clown Craze Sweeps the Globe, peaked my interest.  I do not suffer from a fear of clowns (coulrophobia)…yet, but if I keep reading the news, I may have to ask for a lifetime prescription for Valium.

clowns

While we are on the subject of phobias, here is how I addressed my new-found support group of phobic cohorts:  “Hey everyone. My name is Elizabeth and I’m afraid of inclines.” Inclines? Yes, inclines, also referred to as slopes, ramps, hills, gradients, or ascents. “Welcome, Elizabeth,” they all chanted in a monotone kind of way.

There is a word for my malady. It’s called bathmophobia. For over a decade, this phobia has severely limited my ability to function well in this world. I avoid walking on even the gentlest of slopes. I’ll walk backward up a hill, but no way will I attempt to walk forwards. Sounds weird, right? Well, if you’ve ever seen me walking backward up the jetway to the airport terminal, it looks even weirder.  People stare, make jokes, avoid eye contact and get irritated at my slowness.  Generally, I ignore people by pretending to be pulling a very heavy, wheeled carry-on, or feign looking for the rest of my family who has already escaped to the terminal so as not to be associated with me.

20 years of chronic foot pain can mess you up a bit. Over the years my brain has learned to avoid potentially noxious stimulus. Protecting the area of the body that hurts is a normal response, one which is deleterious if left to linger for an extended amount of time. Muscles, tendons, and fascia tighten, and rigidity sets in. My gait has changed. There is little heel to toe motion.  My calves are tight. I’ve been walking as if I had big blocks of ice on my already very large, size 11 feet-bang, bang, bang. You can hear me coming for miles away. And you wonder why you never see me in a dress!

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Up until now, I’ve been half-heartedly facing my bathmophobia. Like everything else in my life, if the consequences are not dire, the task or challenge will most likely remain at the bottom of my never-ending list. Here’s the thing – Gilles and I own horses who have to move to a new pasture soon, a pasture where I will be faced with a 6 percent grade incline. Oh my……

A little bit about Athos: He is more canine than equine. Initially, Athos belonged to Yohan who discontinued riding because of CMT-related fatigue and pain. Then, I started looking after him and he quickly became my primary reason to get up early in the morning to walk and exercise.  Athos, lacking the 2 inches necessary to earn the title of horse, is technically a pony (shhhhh, don’t tell him), but he thinks he’s a Clydesdale, or maybe a Great Dane, depending on the day.  I ride Athos too, but standing 5’9” tall, with daddy longlegs limbs, my ice blocks nearly touch the ground when I get on his back. I can almost break with my frozen heels…..no joke!

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He loves kids, and kids love him. He is particularly fond of my 9-year-old “niece”, Bella, and vice versa.

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Athos loves performing.  In fact, he’s clicker trained and knows a lot of tricks, from nodding his head, “Yes” to pushing a ball around the arena to picking up sticks and retrieving. Athos will do almost anything for a carrot!

Watch the video below where Bella and Athos are playing!

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https://www.youtube.com/watch?v=gRWbpvvf0Mg

 

So, I need to get moving in the upward direction. I have my mind set on conquering the 6% grade hill below (it’s steeper than it looks, folks).  It’s become my Everest, my K2, my Annapurna. If I can do this, I can do almost anything I put my mind to.  I’ll keep you posted.

slope

 

PS: And in the meantime, stay away from 8-legged creatures, clowns, and oak trees!

 

Surgery is Imminent

Yohan’s Surgery #1 – Surgery is Imminent
June 20, 2016
The Eve of Surgery

 

His toes are curled, especially the pinky toe which begs attention by standing just that much higher to make wearing any shoe a challenge. His crescent arches make walking a balancing act. His calves are as tight as the string of a bow and his ankles are turning out as the supporting tendons lose their grip. Thick, but hard earned callouses are just a bonus for winning the CMT lottery.

CMT is usually passed down from one generation to the next. It is inherited. Yet, neither my husband nor I have it. Yohan is the first person in our families to have CMT. His CMT is caused by a spontaneous genetic mutation. A mutation that can be passed on to his children, his children’s children, and so on and so forth.

Yohan will have reconstructive foot surgery tomorrow morning at 7:00 am, a surgery which has been planned for a year and scheduled for 3 months.

CMT foot

A few weeks ago, in a moment of sheer fear and anxiety, I clumsily suggested that we might want to get a second opinion on the necessity of surgery, a surgery that was only 3 weeks away.

In shocked disbelief, Yohan blurted out, “Are you expletive kidding me? After choosing to put my life on hold for a year after graduation? After all the in-depth discussions and conversations we’ve had?   No way. I’m resolute in my decision. Now let’s get this over with and put it behind us.”

Enough said. My worry asked the question and the voice of reason responded: the surgery is a go. The reality is that Yohan can no longer run, walk with confidence or stand without pain. It’s time. It’s time for an upgrade that only the hands and skills of a competent orthopedic surgeon like Dr. Pfeffer can offer. After tomorrow’s surgery and a 6-month healing process, Yohan’s calves will relax, his pinky toe will align, his arch will flatten and his tendons will be strengthened. Tomorrow brings the promise of less pain and more stability.

Any surgery is risky. And the recovery for this particular surgery is long and tedious.  But the possibilities of a new tomorrow are endless. So, when anxiety rears its ugly head, I am guided by Yohan’s words: Plan for tomorrow, then live in the now. Our brightest future lies in the sound decisions of today.