Life With Purpose – Redefine Time

Flipping through my expired French passport, Gilles made a loud gasping noise, “You haven’t been back to France in 18 years!” “C’mon. It can’t be that long,” I countered. Squinting to see the faded passport stamp, I made out 15/06/2003. “Yikes! Where have I been? What have I done? Where’d the time go?” I wondered. Those years were a blur.

The sands of time had slipped through my fingers in a blink of an eye. I was mortified. Going forward, I was intent on figuring out a way of decelerating time. And I think I’m on to something. But first, the backstory.

The Backstory

In 1989, Gilles and I met in Grenoble, France. I was on a Fulbright scholarship in Grenoble. As an aside, when I told my family and friends I was going to spend a year in Grenoble, many heard Chernobyl (site of the 1986 nuclear accident) and completely freaked out. A year abroad in Grenoble was much easier to swallow.

Gilles was returning from the US, where he’d been employed by IBM in California. We met through my brother, Ray, who essentially set us up on a blind date (a story for another time)! Two years later, we were married in Biviers, France. 2 years after that, our son, Yohan, was born, and 2 years following that celebratory day, I threatened divorce!

We had a very disturbing conversation which went something like this:

G: Elizabeth, want to move to California?

E: Are you high?

G: Seriously, I’ve been talking to colleagues at HP in Palo Alto, and they’ve offered me a once-in-a-lifetime opportunity (this is a phrase I hear more and more with time).

E: You’re a funny guy!! Fat chance. I love my life here.

G: We can buy a nice house, be close to the ocean, and travel the country! 

How Baywatch Once Again Became One Of The Most Widely Distributed Series
Baywatch Babes

E: Are you freakin’ kidding me? Nope. No way. Negatory. I am not moving. We’ve been here for 7 years and I’m loving my life. Why would I want to go to a place where blond hair, big boobs, short skirts, and facelifts were a thing? (In my defense, as a Vermonter, my only real experience with Californians was the TV show, Baywatch. That’s not me. Although I’d never really spent any time on a farm or in the backwoods, I considered myself a VT country girl!!)

This same dialogue went on for weeks, took different twists and turns, and created a lot of tension:

G: But……..

E. NO!!

G: And……

E: You can’t make me.

G: Why don’t you talk to my friends Jo and Neil.

E: Why don’t you take a flying leap off a cliff?

After 4 to 5 pressure-filled months, Gilles convinced me. I totally caved. Begrudgingly, I moved to the Bay Area with Gilles and Yohan in 1995, and though I rarely admit Gilles is right, he hit it out of the ballpark on this decision. I’m glad we moved.

During our first preview trip, I sheepishly realized the Bay Area is nothing like Bay Watch…dodged that bullet! In fact, people were friendly, the weather was ideal and life seemed bearable.


This past November, I went back to France after an 18-year sabbatical. I cannot pinpoint why I avoided France like COVID; it just sort of happened that way. Gilles’ mom, Blanche, has not been in the best of health, so I wanted to spend time with her. Life is super fragile.

Leading up to our European adventure, Gilles encouraged me to reach out to good friends with whom we’d lost contact. Remember, in 1995, PCs were beginning to make their way into the homes of the general public. Up until then, the only way to stay in touch was through costly long-distance phone calls or letter writing. Cell phones were a luxury item, texting came much later and internet searches were done through Yahoo.

Except for an infrequent “Like” on Facebook, notification of a Linked-In anniversary or a kudos for a Strava accomplishment, I’d little to no communication with my French friends. In all honesty, I was afraid to look up certain people in the white pages for fear that they had died. What if my email landed in the hands of the grieving family members or was simply launched into deep chambers of cyberspace, never to be found?  I would never know if it was outright rejection, death, or incorrect contact information.

With a little luck and a lot of research, I found my friends; they were all living and breathing! We made breakfast, lunch,4pm tea, appetizer, and dinner plans (sounds caloric, right? I just decided I no longer cared about calories and chose to eat when I was hungry, not obey random habits or schedules). More difficult still was the 20 years later, 20 years older (not necessarily wiser) problem. How many wrinkles, liver spots, and white hairs can you count? Ugh.

Lastly, we don’t speak a lot of French at home, so my language skills were rusty. I worried I would not be able to hold an in-depth conversation which would have literally killed me. Take away my ability to talk, I flatline.

Flatline - Stigma Free Society
Cause of Death? Silence.

This trip was about diving in headfirst, living with doubt and being spontaneous.

Grenoble (not Chernobyl)

Snow-Covered Alps

Driving into Grenoble, I recognized the snow-covered Alps, the Italian pizzerias next to the frigid Isère, the supermarket, Carrefour, and the eggs of the télépheric slowly gliding their way up and down the hill of the Bastille Fortress. If those reference points had disappeared, I would have had to make an appointment with a memory doctor for creeping dementia.   

I used to walk everywhere, hour after hour, mile after mile, and I knew the name of the streets, the shortcuts through farmers’ fields, and every neighborhood store. I was shocked to realize the local bakeries, butchers, fishmongers were few and far between, and the restaurants had changed hands at least ten times, with new buildings everywhere. I guess that sort of thing is to be expected over a 20-year period.

In addition to my disorientation, I was surprised to see so many food/drink machines in France. When did France become automated?

Want some wine? Just bring your bottle and fill ‘er up!

How about a baguette? After some thought, I cannot figure out how the long baguettes make their way out of that machine?  Maybe it’s a new thing – flexible baguettes!

Feel like eating a pizza? Put your Euros in the slot and they come out piping hot!!

Machine-made pizza!


In retrospect, I don’t think I ever really felt French. Being French is much more than language or a French passport. Being French is a way of dressing and thinking. It’s commitment to good food, pleasure, endless nonsensical arguments and a teasing sense of humor. And, as toxically positive Americans can be, the French weigh the scales in the opposite direction.

For example, if you like a meal, you’d say, “That was not bad. Maybe just a little more pepper next time.” Or, if you think someone is nice looking, you’d say, “He/she is not ugly!” Just a cultural thing that was really hard to get used to for a glass half full girl.

Annoyingly, my traitorous American accent was considered, “cute.” Okay, I’ll take the compliment. But, at the time I just did not want to be different. I yearned to fit in.

As for my size 11 athletic shoes, yoga pants and 5’9″inch height (skyscraper tall in France), my being screamed, “American Tourist! Right HERE. Come and see the American Tourist!!”

As we visited friends and family, many of those same fears and inadequacies came roaring back with vengeance. But, I was able to move beyond the discomfort, because those details were no longer important to me. If I was seen as too loud, too tall, too hard to understand, that’s okay. It just did not matter anymore. It’s taken 59 years, but I am more and more comfortable with who I am. Love me for me, or not at all.

As I look back on the 2 weeks we spent in France, I am grateful to have had quality time with Gilles’ mom.

Blanche is the definition of tenacity!

We also reconnected with many good friends, who welcomed us with open arms. The icing on the cake was the time I spent with my good friend Bethany, catching up, visiting Monaco and celebrating her 30th birthday together at the fancy Negresco hotel.

In Monaco

So, what’s the secret to slowing the perception of time?

First, as I age, I realize that time slows down when my attention is on the now and I prioritize mindfulness.

Secondly, boring daily routine is a time-eating monster, so seeking out novelty, as would a child, is a must. Long-lasting memories are built on deep emotional experiences.

Next, I am starting to limit my time checking email and scrolling through social media channels…..literal time wastes.

By seeking quality over quantity, and focusing on the present moment, I am making a conscious decision on how I spend the seconds, minutes, hours of my life. I know. It sounds good on paper, and no, I don’t have this all down to a perfect science; I am a work in progress, but aren’t we all?  

CMT: So Much More Than Hands and Feet!

Yohan gets Rylee’s mind off her knee pain.


“What’s up with the knee brace?” I asked 12-year-old Rylee, who was visiting from Pennsylvania for a couple of days. Head down, in a whisper, she told me, “My knee keeps popping out of joint. It hurts really bad when that happens. ” Just the thought of having my patella on the side of my leg for any extended amount of time makes me cringe. Yuk!


I will not stand for this. Will you?

Helping Yo with his drops!

“Ugh. Can you put these drops in my eyes?” Yohan groaned. He had just had eye surgery and needed drops every hour, on the hour. I almost said, “Buddy, you can do that yourself.”  And then I remembered his tremor and weak grip strength.  “I tried,” he grimaced, with water streaming off his cheeks, “but I missed!”

I will not stand for this. Will you?

Bethany and Elizabeth

I dread the thought of Bethany coming down with a cold because coughing takes energy and congestion robs her of the precious air needed to breathe effectively. Did you know that CMT can affect the nerves leading to the respiratory muscles? For some with CMT, the thoughtless act of breathing freely becomes a forced, challenging and anxiety-provoking undertaking, which may necessitate frequent visits to the ER. Not fun. Not fun at all.

I will not stand for this. Will you?

So, you see, CMT is much more than a funky way of walking, foot drop, high arches, and leg braces. CMT may also causes cramps, falls, balance difficulties, cold extremities, nerve, muscle and joint pain, curled hands and toes, altered reflexes, extreme fatigue, sleep apnea, hearing loss, etc.  In short, CMT is a bitch!

I will not stand for this. Will you?

The most amazing thing about CMT is that we can fight it. Unlike many diseases, the genes that cause many types of CMT are known. The CMTA’s scientists are working tirelessly to stop or slow down the progression of CMT, and they are making headway. We’ve accomplished so much since 2008:



• Clinical planning has started. Working together with the NIH and the MDA, we are developing our clinical infrastructure: new centers, more clinicians, patient information and history over time.
• We are developing ways to measure disease progression in people with CMT.
• We are starting to use cellular and animal models of CMT to help pharmaceutical companies test their drugs quickly.
• We are partnering with pharmaceutical companies and labs to apply breakthrough genetic therapies (like gene therapy, RNAi, CRISPR) to CMT.
• We will continue to expand our program to cover more forms of CMT.

Join me to raise the funds to bring a drug to market and rid the world of CMT. Big goal? Well, maybe, but why not dream big? We’ve got to start somewhere.

WE will not stand for this.

Imagine what we can do TOGETHER! Did you know funds are what stand in the way between us and a treatment for CMT? Not scientific understanding. Not resources. Not clinics. Not patients. MONEY. I certainly don’t have all the money needed to bring a drug to market, but with your help and the help of others, the money can be raised to support scientific research. It’s doable.

Chris Ouellette-The organizer of the Cycle 4 CMT

Want to help? Our family has put all its efforts into Vermont’s Cycle (And Walk!) 4 CMT event and thanks to friends and family like you, we’ve raised close to $650,000 over the past 4 years. That’s not chump change, friends.

We are now preparing for the 5th Annual Cycle (and Walk!) 4 CMT event, to be held in Charlotte, VT on Sunday, August 26. Every dollar counts. Any donation is valued. Spread the word.

To join our efforts to build a better tomorrow, check out our website: and donate a little or a lot.


Here is how to start changing lives:

1) Register for the Cycle (and Walk!) event and/or,
2) Fundraise! Tell others why this cause is important to you and/or,
3) Spread the word and register a friend and/or
4) Sponsor a rider, a walker or the event itself and/or
5) Sign up for the after-party.

Thank you for offering a promising future to Yohan, Rylee, Bethany and the 2.8 million + people around the world with this debilitating disease.

Never Give up or Give In. Just GIVE!


CMT Is Exhausting: 5 Insider Tips For Friends

Judging a Book by its Cover-Just Don’t

“Who is that girl?” she asked, squinting warily while jerking her chin forward like a rooster, not so discreetly pointing out the slim, well-dressed woman in question. “She doesn’t have CMT! Look at those heels!! Pfft! Forget about it. She’s a fraud!” It’s true, Jeana did not appear to have CMT on the outside, but her past revealed a different reality. Surgeries on both feet when she was only 16 helped her gait immensely, enabling her to walk brace free today.

However, if you look real close, her pinky toes look funky, betraying a harrowing brush


Jeana’s pinky toe reacts to the surgeon’s scalpel.

with a surgeon’s scalpel. “No need to worry about the little toes on each foot.” the surgeon grinned. “I simply removed all the bones! All fixed!” So, instead of hammer toes, sticking up and out, she ended up with cute, floppy, puppy dog ear toes, which prove to be quite the challenge when wearing sandals.

Floppy toes, like floppy ears, have a mind of their own!

People’s CMT vary dramatically from one person to another, and telltale symptoms of foot drop, muscle wasting, fatigue, pain are not always super obvious. So, to my embarrassment, I often forget she has CMT.

But, I forgot you have CMT!!

How many times has CMT gotten me into trouble? When Jeana and I organize CMTA conferences together, we always do our best to make sure that everything is handicapped accessible; tongs are not used, tables are separated, leaving enough room for scooters and wheelchairs to pass, boxed lunches are chosen over buffets. Inevitably, no matter how much we prep the hotel staff, someone always seems to make a mistake, and we have to think fast on our feet to rectify the situation.

At the Patient and Family conference we held in Los Angeles a few years back, I remember the room being stuffy and hot. After 90 minutes of sweating and fanning ourselves with the paper programs, we took our first 15-minute break. “A big round of applause for Dr. So and So…what an informative presentation!” I exclaimed into the microphone.   “Now, let’s take a few minutes to stretch and quench your thirst with some nice, refreshing beverages. We’ll see you back here in 15 minutes.” I walked out into the hall, and what do I see? Big, heavy pitchers of water and lemonade. Merde!

Making life difficult for people with CMT.

We quickly asked family and friends without CMT or hand weakness to serve the drinks during the break.  After about 5 minutes, I look over at the drink station and our beverage volunteer happened to have wandered off and just disappeared into thin air. People were thirsty….parched even and getting more and more impatient while shifting their weight from left to right, left to right just to stop from teetering over (keeping your balance while standing is difficult with CMT).

I ran over and filled the empty spot for a couple of minutes before my little eye spied Jeana, who was talking, and talking and talking (no surprise there, right?), to a conference attendee.

I spied Jeana with my little eye.

“Jeana,” I blurted out frantically and a bit too harshly,  “if you can’t find someone to stay at the water station, just stand here and serve the beverages to these poor people with CMT who are struggling.” She looked at me in disbelief. Her face expressed what she was thinking. “Really? You are asking me to fill glasses, dumb ass? I too have CMT!” But being the mature and respectful person we’ve all grown to admire and love, she nodded her head and made her way to the water station and tried her best to serve our conference clientele. When I realized what I had asked of her, I regretted it….immediately.  Not because I made her suffer, but because she would never let me live this situation down….EVER!  As much as she did not say in the moment, she let her thoughts be known loud and clear after the conference. In fact, she won’t hesitate to bring this up when she needs a little extra material to tease me with. I hear her voice now, “Oh, really? I’ve got a better one. Elizabeth, remember that day when….  “


People with CMT are fighters with motivation, determination, strength, and willpower. Some are a bit sassy, too! One day, wearing my very concerned and sad face, crying-face_1f622I said something like, “Bethany, I don’t know how you do it every day.  Just putting on socks, braces, and shoes takes so long. It all seems so limiting.”   I was attempting, albeit poorly, to relate to her emotionally in some small way.  Thankfully, I have a Master degree in Counseling Psychology, which makes communication with people from all walks of life so much easier (Like Judge Judy below, I’m inflicting some heavy duty eye rolling on myself right now).

If you know Bethany, she usually thinks through her answers before responding. Not that day! That fine afternoon she was quick and sharp, replying without missing a beat, “Yeah, it’s not the best, but I feel fortunate that I’m walking. From wheelchair to walking is a pretty huge deal.” There was a short hesitation before she emphatically reminded me that she was able to walk much further and longer than I can…a LOT further and a LOT longer. “You are limited by your foot pain.  My braces have set me free!” she replied without flinching.

IN YOUR FACE! OUCH! Insert knife and rotate slowly 3 times. I mean, what do you say to that? ……..Exactly. I said nothing and followed her progress as she trained to walk a 5-day 40 Mile Trek of Peddars Way in Norfolk, England! She succeeded and came through with flying colors!

Bethany walking and training. I am in the picture for effect only. 🙂

Just Ask

I had spoken over the phone to Bethany quite a few times before she moved to the Bay Area in 2012. We had some great conversations, talked about volunteer opportunities and CMTA-related projects. When she moved here, we made a lunch date. I drove. On the way to the restaurant, I asked 100 million questions to which she sequentially answered, “Yes. No, I don’t know”  over and over again until I got really bad cotton mouth from talking too much. So, I stopped blabbering and lived painfully through seconds upon seconds of dreadful silence (The longest ten seconds I’d ever experienced –  it felt more like 10 hours- can you tell I’m an extrovert and hyperactive?) Bethany started to loosen up by the end of lunch, and I caught a few glimpses of the witty and sardonic person living and breathing underneath that cloak of quiet reservation.

Heading back to the car, we crossed the road and I saw that she was struggling a bit to walk, but I did not know if she needed or wanted help. What to do? So, I did absolutely nothing. I pretended she wasn’t struggling and that everything was A-Okay. Walking a step or 2 in front of her, I heard a faint whisper, “Elizabeth?”  I turned around to an outreached hand.  “Can you give me your arm to cross the road?” she asked politely (her mother did a hell of a job teaching this girl manners). My elbow jutted out in a microsecond and off we went, arm in arm across the road. Walking harmoniously side by side, she interjected, with a mischievous grin,” Jeesh. You of all people did not think of lending a helping hand? I’m so disappointed.” WHOA! The girl is a live wire….a comedian! This snarky comment was proof that her dad was also very involved in her upbringing. From that moment on, we became forever friends.

Laughter Really is the best Medicine!

The CMTA held its first-ever leader conference in Las Vegas many years ago. Leaders from all over the US attended, forming bonds of friendship and caring. The first evening, after dinner, we all made our way to our rooms, preparing for a very long day ahead. Breakfast was at 8am sharp the following day. At 7 am, Pat D. our Director of Community Services at the time called me with an urgent request, “ One of our leaders needs help buttoning and zipping his pants.”  Apparently, he lived with family and on his own, buttoning and zipping were practically impossible. “Why do I have to go?” I groaned.  “Can’t we get Dana to go help him…man-to-man? Now, on the verge of yelling, Pat reminded me that, “Dana can’t button or zip his own pants, how is he going to button someone else’s pants?” Good point.

Zippers and Buttons: the enemy

So, off I go to room 3016. When he opened the door, I could tell by his red cheeks that he was quite embarrassed. I felt a bit awkward, but what were our alternatives? I could have insisted that he attend the conference in his boxers, but I’m not usually that mean. So, I simply knelt down in front of him, (please do not visualize this scene!) zipped and buttoned him up and made a joke about the entire scenario. It was a true bonding experience.  The rest of the conference was a no-brainer compared to that experience.

To all my friends with CMT, thank you for trusting me with your struggles, accomplishments, thoughts, and anxieties. And thank you for your patience. I’ve learned so much from every single one of you and continue to learn more every day. And, when I mess up, let me know  – my closest friends don’t let me off the hook, why should you?

Good Friends Are Hard To Find (which can be a very good thing). From Left to right: Me, Bethany, Jeana

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:

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

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