I was flagged by Sister Helena in 5th grade; she sent me down the hallway to a dark room, where I sat until a woman instructed me, “Read the eye chart.” I started at the top row and slowly made my way down to the third row, “E, F, P, no, Ummm B, F? no, no E?” The lady told me to stop squinting, making the next letters even harder. “L, uh, T or, wait… E?” “That’s good enough,” she said. “Bring this letter home to your parents. I cringed. What had I done now? I was scared, but did not really know what I’d done wrong. I just want to hug that semi-blind 10-year-old with crow’s feet who’d been stumbling around in an unfocused, blurry world all her short life. Sad face. 😦
I will never forget the day I put on my first pair of glasses. I was not particularly fond of the frames my dad picked out. Old people have horrible taste. Seriously! I really wanted cool wired-framed “hippy glasses” just like John Lennon’s, but he picked out geeky blue plastic spectacles; I hated them. The lenses were so wide they hung over the thick plastic frame. “This sucks,” I thought. “I’m never going to wear these stupid glasses.” As ordered, I put them on, went outside, and was astonished. OMG! I could see the leaves high in a tree, the eyes and individual feathers of a bird, and people’s faces from across the street. It was a miracle!! Sister Helena… a miracle!
John Lennon Glasses
This childhood memory came waltzing along after a particularly illuminating personal coaching session with my executive life coach, Arda Ozdemir. With my thick-lensed spectacles, I still see pretty well, and the crow’s feet…..well, I still squint so they are even a bigger problem today. But it’s not about the glasses or the crow’s feet anymore.
Through Arda’s teachings, I realize I have been going about my day, blind to choice, possibility, and insight. My mind wears the pants in my psyche, leaving little room for emotion or self-reflection. I had become an automat living day to day without intent, feeling, or direction.
At first, I wondered what I had gotten myself into with these coaching sessions. The first couple of months were tough. I resisted. We talked about sandbags, anxiety, past events. We talked and talked and talked. Arda encouraged me to feel, but I told him I couldn’t. He asked me to close my eyes. I didn’t want to.
I started to trust. His method made sense. One day, I decided I was ready. I finally took that leap of faith and glimpsed within; I found my heart, bound by layer upon layer of imposed belief systems and rules, which were squeezing the life right out of me. I wanted to break free, but shedding my heart bandages was much too scary; I thought they protected me from past wounds. They did not. Personal growth begs openness, careful introspection, and exploration of deep-rooted fears and vulnerabilities.
Through my work with Arda, I’ve learned that change is not always easy or fast-moving, but it is possible and there is hope! Today, I’m more in tune, trusting my gut and paying careful attention to emotional triggers like anger, anxiety, sadness, and guilt. Before reacting, I try to remember to pause, breathe, work through the emotionally-charged situation, and explore the root cause of my reaction.
I have a secret! Did you know we all have the power to see reality in a multitude of different ways? Life is multi-dimensional. When you look at situations from diverse perspectives, it’s like looking through a prism…….every angle offers a unique view, some more appealing than others. I get more curious than angry and look for limiting life patterns when I’m triggered. Once identified, it’s possible to step out of the old ways and into the new by creating alternative pathways.
Looking through a prism
My heart is healing. With Arda’s guidance, I’ve been able to peel off the strips of gauze constricting my life pulse. Today, I see not only with my eyes (and glasses), but also with my heart, which is fluttering with joy. Seeing with the heart opens new horizons, illuminating a path to a happier, more authentic life.
Join me. Come along for the journey. Empower yourself with Arda’s teachings and lead a more fulfilling, meaningful life. It works.
Read Arda’s book: The Art of Becoming Unstuck – Available on Amazon
Take a workshop! Emotional Mastery When: 5 Wednesdays in June; 6/1, 6/8, 6/15, 6/22, 6/29 6 – 7:30 pm Pacific Where: Zoom, please register to receive the link Program Fee: $375 ($75 per session)
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!
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.
Blanche
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.
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!
Reflections
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?
Rip Van Winkle. Ring a bell? He’s the fellow who wandered about in the Catskill Mountains only to meet up with a group of ornately-dressed bearded men who uttered not a word. They may not have been a chatty bunch, but the liquor they shared was laden with a sleeping potion that stole 20 years from our friend. According to the story, Old Rip nodded off, only to awaken 20 years later to an unfamiliar world, with which he was no longer acquainted. This is where my story starts….
Over the past 20 years, I’ve been sleepy…..really sleepy. I liken my chronic drowsiness to taking sedatives every 4 hours of every day. I’d sleep 10-12 hours a night and still fall into a coma at some point during the day which necessitated a 60-90 minute nap. Most days, I enjoyed 5-6 functional hours, thanks to medications used to treat sleep disorders like narcolepsy.
Doctors postulated theories to explain my sleepiness: chronic fatigue syndrome, depression, chronic pain, anxiety, allergies, sleep apnea, nutritional deficiencies, Lyme disease, medication side effects and idiopathic hypersomnia (sleepiness with no known cause). None of the above seemed to pan out, so I offered my own 2 cents and added a couple of culprits of my own – African Sleeping Sickness, Cancer, Magic Spell (along the lines of what happened to Mr. Winkle). Finally, I took stock out in toothpicks-I had to have some way of keeping my eyes wide open.
When medical professionals can’t come up with a diagnosis, they often just shrug, apologize, blame the system or the patient, send you to a different specialist so you are no longer their problem, and of course, some dare to share their opinions, many of which are insensitive and insulting.
Looking over my labs, one physician declared, “You look perfect on paper!! HAHAHAHAHA.” Other comments included, but were not limited to, “You probably have Chronic Fatigue Syndrome. Learn to live with it.” and “You are getting older. You do realize that 55 is not the new 25?!?” Comments like these just made me angry. I envisioned poking their eyes out or punching them in the throat. I would never have actually done these things because I value my freedom and jail does not look fun and neither does the psychiatric unit of my local hospital.
For years, I rode the waves of acceptance, rejection, frustration, resignation and desperation. Every single test came back “Normal”, which, as I’ve been told by many a doctor “is a good thing.” I beg to differ- it is not a good thing when you know there is something wrong, but no one can figure it out!
Combined, my symptoms of sleepiness, exercise intolerance, allergy to alcohol, flushing after eating, extreme reactions to environmental allergies in the spring and fall including headaches, sinusitis, hives and vertigo as well as overall body itchiness did not seem to fit any one diagnostic category.
Literally, sick and tired of being sick and tired, I tried to cover up my symptoms and hide my sleepiness. I lived a double life. When I did go out with friends, I held everything together, only to spend days recovering, sleeping my life away.
Several years ago, I happened upon a new doctor in my area specializing in treating mysterious maladies, including chronic fatigue. I eventually picked up the phone and made an appointment. His first availability was in 6 month – 6 months!
Luckily, there was a cancellation. One month and a zillion blood tests later, Sherlock, the mystery-solving doctor felt certain that I had something called, Mast Cell Activation Disorder (MCAD) and gave me large doses of antihistamines. I was skeptical. What a load of rubbish! I stopped seeing him. A waste of money, I told myself.
Nevertheless, the allergy connection made sense to me and when I got really sick this past February, 2018, I called my allergist. I mentioned the MCAD diagnosis, which was met with resistance, disbelief and push back. In her opinion, I did not have the classic symptoms of MCAD and apparently the new doc on the block did not even do the right test to confirm such a claim. I begged and pleaded shamelessly for her to do the right test. I must have looked and sounded pathetic, because she finally agreed.
The test for MCAD came back positive. Seriously…it was positive. I felt numb, shocked, but more than anything, I felt vindicated.
What is MCAD?
Mast cells, which are part of the immune system, release mediators, like histamine, to remove the thing you’re allergic to. In MCAD, mast cells release mediators too frequently and too often and the body is negatively impacted. In other words, MCAD is caused by hyperactive mast cell activity.
One treatment option was to receive once-a-month injections of a medication which reduces sensitivity to allergens. The side effects? A possible increased risk of cancer, stroke and heart disease is all. I immediately signed up.
After 4-5 months, I gradually felt less sleepy. Was this due to a placebo effect? I think not. I definitely feel 60-70% better than I did a year ago and like Rip Van Winkle, I’m rediscovering my world. What’s changed?
-I sleep less. I still take naps, but I awake after 30 minutes feeling refreshed. During my zombie years, I would take 2-2 1/2 hour nap and still feel sleepy and out of it.
-I am able to read again! I don’t fall asleep after 1 page.
-My focus has sharpened. I am no longer in the clouds all day.
-I am more socially active and see friends more regularly.
-I have free time. What a concept!
-I want to explore the world! I thought my travelling days were over. Next stop? India!
-I laugh harder, longer and louder.
-I don’t dread a night out. I look forward to it!
-I’ve even had nights where it is hard to fall sleep – totally new phenomenon.
-I can be near animals without having asthma attacks, though I do keep my Epi pen close at all times.
-I’m slowly starting to exercise again, and the cramps, muscle soreness and rigidity has lessened significantly.
The drug is expensive, but it has breathed life into my soul. The drug has side effects, but now I live each day more fully and with much more awareness. The drug is not the miracle cure, but it Has changed my existence. I no longer spend my precious energy fending off heavy eyelids or the need to fall asleep anywhere, anytime. The change is palpable and exciting, but if I stop the monthly injections, I’ll most likely be sleepy all over again. But, science is advancing rapidly. Before you know it, there will be other medications with fewer side effects so I’m not going to worry about it. I’m going to embrace the moment and be grateful for how I feel today.
If you have a mystery illness, a chronic or progressive disease, symptoms without a cause, do not give up. No one knows what tomorrow will bring, and it might be the day you find an answer or read about a major breakthrough. Believe in yourself and a few select others and move forward. What do you have to lose?
I dedicate this story to my sister, Kathy who lives courageously with an undiagnosed illness. There is hope. Like the Forget-Me-Not below, you too will overcome. I got your back, sis. I love you.
Top Twelve Reasons I’m Talking About CMT during Awareness Month
12) Confused Faces-When I tell people my son has Charcot-Marie-Tooth disease, I get looks like this:
Let’s stop the nonsense. I’m looking for reactions of recognition, like Dr. House’s below:
11) Dentures? Besides having had too many cavities, crowns, and pulled teeth, there is absolutely nothing wrong with my choppers. Yohan has beautiful teeth and healthy gums, too. Dr. Howard Henry Tooth discovered this progressive neuromuscular disease at just about the same time as the French neurologists, Dr. Charcot, and his disciple, Pierre Marie. So now we are stuck with Charcot-Marie-Tooth or CMT.
10. Eponyms. Jean-Marie Charcot is known as the father of modern neurology. And, he made sure no one would ever forget his legacy. Why? He was generous enough to share his last name with a host of other diseases he unraveled:
I stop my complaining when I remember that the name COULD have been definitely much worse. Why? One of my good doctor friends, a most reliable source, explained that Dr. Nikolaus Friedreich, as in the neuromuscular disease Friedrich’s Ataxia, also wanted credit for the discovery of CMT, but the message of his discovery did not reach the authorities in time….something to do with an unannounced closing of government offices. So the Grand Poo-Bahs did not receive the important Carrion Pigeon or telegraph messages. Bummer for Nikolaus and hurrah for people with CMT everywhere! We don’t have Charcot-Marie-Tooth Freiderich disease (CMTF), but rather just CMT.
Thank God for small miracles.
8. Let everyone know that CMT does not stand for:
Country Music Television
Childen’s Musical Theater
Certified Massage Therapist
7. Pronunciation: Give others ways to remember the name, pronounce like:
\(ˌ)shär-ˌkō-mə-ˌrē-ˈtüth-\
or
or
6. . Shark’s Teeth Convention? Once, I wanted to book a large room for a CMTA conference. The short discussion went something like this: “Hi. I need to book a meeting room for the Charcot-Marie-Tooth Association.”. “Okay, let me see. What is the date of your Shark Tooth meeting?
Enough said. Ugh.
5. Rent a Costume or Let Your Pets Do The Dirty Work!
If you feel awkward about starting the CMT discussion, you and your animals can dress up like a shark – it’s fun and you are bound to get s few questions! Or, just paint your horse with non-toxic paint. People will ask…..trust me.
4. Braces – Tell people you wear braces and when they look at your mouth, lift up your pant leg and flash them with your one-of-a-kind ankle-foot orthoses (AFOs).
3. Genius!
Wow your friends with your knowledge of medical jargon. Use CMT-related words like:
peripheral neuropathy, autosomal dominant, hereditary motor and sensory neuropathy, dorsiflexion, plantar flexion, pes cavus, myelin, axons, exome sequencing, orthosis, etc……
Be the expert on questions they can’t answer. Teach a friend and make good use of your never-ending CMT knowledge!
1) Acceptance-Whatever you do, talk about your CMT. Share your experiences with people who might not know about CMT. Most people want to know and CMT Awareness Month provides a platform to share resources and stories in an effort to shed light on this progressive neuromuscular disease, its symptoms, its effects. Knowledge is power. Go forth and tell someone!
Idling outside a business in Charlotte, VT, I glance at my brother who is skimming his notes, “Owner’s first name is Phil. Started the company in 1984. My friend, Tina knows Phil’s wife, Patty because their kids ride horses. Got it. ” Then turning to me, with a smirk, he reminds me of my role, “Okay, Let’s go. Remember, you look around the store and buy something, and when you are ready to make your purchase, find me and I’ll introduce you to the person in charge.” And off we go – Chris with his Cycle 4 CMT flyers and his iPad, and me with my credit card.
Chris with chef, Maura O’Sullivan, at Penny Cluse Cafe – a proud sponsor of the VT Cycle 4 CMT event!
Entering the store, Chris will ask for “Phil” while I start browsing. Chris does his thing, I do mine and he usually walks away with a sponsorship for the Cycle 4 CMT event. And me? I get in the car with a new shirt, a few gifts, and other amazing VT products, like Maple Syrup (If you don’t like maple, you might as well skip the trip to Vermont-and just give a donation. Everything, and I mean everything has maple in it.)
On a more serious note, asking for charitable contributions, even for a great cause like the CMTA, can feel scary and awkward, but if you are genuinely interested in people and truly believe in your cause, success is definitely attainable. I’ve asked for a lot of donations over the past 15 years for the CMTA, but watching Chris in action raised has my fundraising IQ considerably. Here are a few takeaways:
The More You Know – Chris always does his research before walking into a store or business. He finds the owners’ names, reads about their backgrounds and tries to find a common link, interest, or point of contact. This commonality, once discovered, will definitely make the discussion and ensuing conversation flow more easily.
Description – Keep it short, make it personal. After finding the key person, who might initially be a bit guarded (as would anyone when approached by 2 determined strangers on a mission), Chris makes and keeps eye contact when explaining the details of the upcoming event: 5th annual Cycle 4 CMT. Nephew has CMT or Charcot-Marie-Tooth, not Country Music Television. A disease that attacks the nerves. Loss of function of the hands, arms, feet, and legs. The event has raised a lot of money for CMT research, our sponsor list is growing every year. Then, he usually shows the person the event website, the list of donors and a few pictures of Yohan). Pictures are worth a thousand words.
Yohan and Uncle Chris
The Story –-As an avid cyclist, skier, hiker born and raised in VT, Chris professes, “I often wish I could spend a day skiing or cycling with Yohan. He used to snowboard, but that ended when he developed CMT-related back problems and his feet, so deformed, could no longer fit in a ski boot.” Remembering the disappointment, I too start to choke up. He continues, ” I wanted to help him, but how? And then it came to me – Why not put on a CMTA fundraiser in support of CMT research, connecting the passion and energy that Vermonters possess for outdoor activities? As a result, the Cycle 4 CMT was born in the summer of 2014.
Empowerment – Chris’ delivery is moving and heartfelt. He speaks with conviction and confidence, empowering others to be part of the movement to end CMT. And it works. Why? People feel a connection to Chris’s story, to Yohan’s journey and to our determination to raise the critical funds needed to get us to clinical trials. Feeling our great sense of urgency, people want to take action and get involved in something bigger than themselves. Ultimately, giving back unleashes opportunity. potential and a powerful force of good in the world.
Kevin is more than a hero – he’s a superhero!
Thank You – You can never say it enough. We appreciate everyone involved with the Cycle (and Walk!) 4 CMT event, from sponsors to participants, and donors to volunteers. You are our heroes. It takes a lot of compassionate, kind, generous people to bring about change in the world and we are fortunate to have you by our side, fighting the CMT battle. Your involvement and consideration also provides promise and hope to the Yohans of the world who are deeply moved by the fact that you genuinely care.
So, when you approach someone for a donation, be confident and tell your story from the heart. What’s the worst that can happen? For diverse reasons, you may get a “no, thanks.” That’s okay. Don’t take it personally. Just know that you have succeeded in informing one more person about CMT.
Now, you have a few fundraising tools, so start a walk, a cycle, a sit-a-thon – whatever. Or, if you can’t do it this year, give to the Cycle 4 CMT. If you cannot make it, we came up with a new feature: the VIRTUAL walk or Cycle. Now anyone, anywhere can take part in the Cycle (and Walk!) 4 CMT. For more info: www.cycle4cmt.com.
PS: Just an FYI-This year, Chris joined in on the shopping spree. He ended up buying this top from one of our new sponsors – AJ’s Ski and Sports!! : I love visiting our sponsors!
Is that what you are thinking? Hold on. Before you get all judgmental on me, let me explain why I believe Rare Disease Day to be a noteworthy event.
Rare Diseases- The Backstory
Passed by Congress in 1983, the Orphan Disease Act defined a rare disease as a condition that affects less than 200,000 people in the US. This piece of legislation provided incentives, like tax cuts, to encourage pharmaceutical companies to develop medications for rare or orphan diseases.
Here are some Rare Disease Statistics:
-There are over 7000 different types of rare diseases.
-25-30 million people in the United States are living with rare diseases. That’s 1 in 10 Americans.
-It is estimated that 350 million people worldwide suffer from rare diseases.
-80% of rare diseases are genetic in origin.
–95% of rare diseases have not one single FDA approved drug treatment!!
My son, Yohan, has CMT or Charcot-Marie-Tooth disease. Though it is known as an inherited disease, Yohan’s rare disease is the result of a spontaneous genetic mutation. I guess these things gotta start somewhere. There is currently no way to slow down the progression of CMT.
Over the years, Yohan has literally tripped and stumbled, learning to manage this diagnosis and its symptoms. Progressive in nature, CMT gets worse over time. So just when you think you’ve reached status quo, WHAM, something else goes wrong. It’s the nature of the beast – the stuff that life is made of.
So, having CMT is bad enough, but then life gets even more complex when:
-You trip and break your kneecap.
-Your tremor is so apparent that a friend tells you that maybe cold turkey is not the way to go.
– Your fingers go rogue, making it impossible to grasp your cell phone before it falls into the port-a-potty. To make matters worse, you panic and attempt to retrieve it. Ewwwwwwww! But, it no longer works. Shit happens!
-You accidentally hit “send” on that that email no one was supposed to see. Monday morning is going to be a bitch.
–You are suddenly diagnosed with a second rare and progressive disease.
Yes. Really.
No one ever made a rule stating that one rare disease per person is the maximum you can have. Some lucky people get none, and others get 2 or even more.
This past summer (2017) Yohan was diagnosed with a second rare disease that has nothing to do with CMT. It’s called Keratoconus (Carrot-A Cone-Us), which also has nothing to do with carrots and a lot to do with cones.
With Keratoconus, the clear, dome-shaped tissue that covers the eye (cornea) thins and progressively bulges outward into a cone shape. It is also progressive in nature.
THANKFULLY, there is a treatment to slow down the progression. It’s called Corneal Collagen Cross-Linking (CXL) whereby Riboflavin or Vitamin B2 is used to strengthen the cornea. Unfortunately, this procedure is not FDA approved and still in the investigational trial phase. Non-FDA approved means that insurance will not cover the procedure, so I guess we’ll be paying out of pocket.
Rare diseases are expensive.
The shock of the diagnosis is fading, and we are all coming to terms with the news. Compared to foot surgery, this “should” be a breeze. But, I have trained myself never to use the word “should” because it sets unrealistic expectations, ends up undermining me and adds weight to my already present feelings of anxiety, stress, and lack of control in the world.
My first reaction to unpleasant or distressing news is to stick my head in the sand, even if I might suffocate. Instead of facing the facts head-on, I hide out for a while and do a lot of self-talking before I can come up for air and move forward. And I’m not even the one who needs the eye surgery!
Where I Hang Out Most Days
How’s Yohan taking this? Yohan lives in the moment, in the now. And he is resilient. He doesn’t dwell on what might happen at some point in the future. He weighs the pros, the cons, seeks out good counsel and forges ahead. He must have got that quality from his dad as he sure did not learn it from me. On the contrary, I am learning from him….again. Funny how that happens.
Deep inside I know that whatever the future holds, we’ll all be able to handle the outcome. We always do.
But I first better get the sand out of my eyes or I might be undergoing a similar eye procedure!
Everyone gets down from time to time. When I am not in a good place, I try to think about something positive and uplifting. Sometimes, well okay, often, my mind brings me to unusual places, which make me laugh. Let me share 9 of my thoughts with you. Do any resonate?
You are a miracle.
You are all winners. I often find myself saying, ” I never win anything.” Then, I thought about this statistic: According to scientists, it is estimated that we have a 1 in 400 trillion chance of being born. 1 in 400,000,000,000! So, let’s say that there are currently about 7.5 billion people living on the earth right now. Let’s create 553 planet earths, each with 7.5 billion people. Now, you have to randomly choose just 1 person from any of the 553 planets. That person is you! That’s how incredibly lucky you are to be alive today. Crazy, right? We are all winners in the lottery of life.
Freedom rocks. There is so much beauty in the world and most of us have the ability to enjoy the air, sky, animals, friends, etc. I often think of those in prison, in solitary confinement or people who live in countries where freedom is severely restricted. Take a minute to take in and appreciate the tiniest of detail in your surroundings. Then celebrate your freedom by dancing, throwing your arms up, kissing a loved one. Why? Because you can.
Appreciate the beauty all around you.
Positivity. The way you interpret life events will definitely influence your feelings because thoughts create emotion. As master of your thoughts, you can put a positive spin on whatever happens to you, which will improve how you feel on a regular basis. And, if you end up in a slump, remember that you will not ALWAYS be in that same exact frame of mind. Laughter, joy, and happiness are not far away because feelings are temporary and fleeting. The way you feel will inevitably change.
I’m a modern girl. I am so happy I live in modern times, and not in the Middle Ages. Life does not look so fun back then. Serfs under the feudal system worked long and hard, doing back-breaking work all day long. Women spent their days spinning wool and making clothes (seriously, can you see me successfully making clothes on a spindle all day? They’d throw me to the pigs). Only 50% of the people lived until 35, which is the average life expectancy of the time. There was no electricity and families lived in one room huts where 1/3 of the space was fenced off for the animals. The hearth in the middle of the room gave off heat, but the air was always smoke-filled. You get the idea.
Daily life in the Middle Ages
Cave Girl? No thanks! I’m also glad I was not born a cave girl. With my horrible vision, I would have been TOAST very early on. By the time I was in 2nd grade, my teacher figured out I was very nearsighted. Today, I am considered legally blind without correction. So when I play out my pre-historic times life, I get this scenario, “That pile of leaves looks fun! One, two, three-JUMP!” Then, in midair, I freeze, “Oh snap! The pile of leaves just made a growling noise that sounds just like a sabretooth cat. Good-bye cruel world.”
Sabertooth Cat
The internet is amazing! Information 24/7 at your fingertips. And Skype helps connect to people far away, in the US and way beyond. Today, it’s so much easier to research a topic from home instead of going to the library, using the Dewey Decimal system to find a book on a topic of interest.Now, video call a friend or a relative….just make sure you are wearing clothes to be seen in, at least from the waist up!
This photo makes me nostalgic, but I prefer the internet any day!
Changing your first name is totally legal. Seriously, there are some parents who did not think straight when naming their child. Here are a few very unfortunate names I’ve found while browsing the awesome internet:
Jack Goff
Dick Smalley
Ben Dover
Donald Duck
Phat Ho
Preserved Fish (Thanks, Shirley!)
And, there are many, many more horrible names out there. Many of these names are found on prison warrants for arrest. Well, what did you think would happen when giving your kids such embarrassing monikers?
Evolution is Cool For example, giants do not exist. Bare with me on this one. I always wonder how many ants I’ve unknowingly killed. To an ant, I am a huge monster, with big, murderous feet. I am so thankful I am not a tiny ant, and even more grateful that giants exist only in folklore. Can you imagine if we had to be worried about being crushed by giants roaming the earth? That would totally suck. And on that same note, I must confess that I am happy the dinosaurs are extinct. I just could not deal with knowing that at any time, I might come across an enormously fast lizard with little tiny hands reaching out to devour me for lunch.
Giants are fake.
CMT Sucks! (Joyce Steinkamp, thanks for the lollipop idea!)CMT stands for Charcot-Marie-Tooth disease-a progressive disease of he the peripheral nerves. Know if you have CMT, there is much more information, research, progress and awareness of this very common, but rare disease than ever before in history. And our researchers are working day and night to provide treatments to stop CMT. Bottom line – hope is real. But, believing without acting will not get us over the goal line. So, if you really want to feel good about yourself, get involved in a charitable cause like the CMTA by volunteering, donating, publicizing, joining igive.com or amazonsmile.com (choose CMTA as your charity of choice). Be part of the solution – cmtausa.org
Her parents passed all the tests with flying colors and were deemed to be fit and loving. The arrival date was only 2 weeks away – just 2 weeks! So little time to prepare for the new little one – and right before the holidays, too – the best Christmas present ever!
I melted when I first laid eyes upon her – cute, energetic, friendly, outgoing and smart. But, she didn’t really look Tawainese. In fact, she did not look Asian….at all! First of all, she was black and had huge brown eyes. She understood a few English words and was not the least bit shy. I wondered who her parents were and how she came to this world. Whatever. In the end, it didn’t matter – she was now in a stable home with grateful and loving parents, relatives and friends.
Just last week, I offered to take her to the park for the morning. Now, it’s been a long while since I’ve had to care for a youngster, and I must admit feeling a tad bit nervous. With her bag chocked full of snacks, drinks, toys, etc, we headed to the playground. I lifted her into the back seat, strapped her in, and heard not a peep the entire ride.
“We are here!” I sang merrily. Once out of the car, she could not wait to join her friends in the yard. In fact, she was so excited, she darted for the playground, practically pulling my arm out of its socket. Once in the fenced-off area, I let go and she ran and played for well over an hour, pausing only to take a sip of water here and there. We had so much fun!!
As new technologies evolve and advance, I find myself yearning for a simpler, less complicated life, where the pressure to keep up with modern advances slows so we can all just take a minute. WE ALL NEED TO TAKE A MINUTE! Overwhelmed by continual noise – texts beeping, phones ringing, watches vibrating…I’m leaning toward Neo-Ludditism, or opposition to modern technology.
What happened to the days when appliances did not talk back sassily and Amazon’s Alexa was a mere pipe dream. In a society where obesity and lack of exercise are major problems, some dude decided to play into America’s soft spot and make the easiest of tasks….even easier!
What happened to 10,000 steps a day, burning off a few calories and staying fit? If robots do more and more for us, it’s pretty tempting to sit your tush in a chair or lie on a couch all day while commanding the newest and greatest automated robot to do everything for you.
Recently I visited a friend who showed off his mastery of Alexa’s capabilities, “Alexa, volume down. Alexa, lock the garage door. Alexa, take the dog for a walk. Alexa, flush the toilet, ……..!” He talked to her like a partner, a friend for life, a soul mate even. I told my friend that he should get out more and meet living and breathing human beings. In movies, people fall in love with their robotic counterparts (Ryan Gosling in Bladerunner) – I bet this happens in real life, too. Just caution to the wind!
Just last week I rented a car. Who’s the smart ass who rented me a smart car? The seats vibrated when I drifted in the other lane, a voice scolding me when I inched over the speed limit and flashing lights on the side mirrors alerted me to cars that were outside my range of vision. I’m already a bit ADD – why would anyone put such a distracting monitor in front of me, in a moving vehicle, unless they actually wanted to cause an accident?
So, I opted not to take full advantage of the integrated map system in the rental car because I had my iPhone and more or less know how Siri works, though I find her to be partially deaf and a little bit evil. I asked Siri to direct me to my hotel, and she did great until she didn’t.
One mile from the hotel, she matter of factly commanded, ”Park your car and walk the rest of the way. It is a one-mile walk to your destination.” So, I’m in the middle of the desert in Arizona. It is hot and I have 4 heavy bags in my huge smart car and she expects me to tackle the brush, the scorpions, sharp cacti and walk? At that moment, I ended my short-lived relationship with Siri – the trust was gone. I found the hotel all by myself, and there was absolutely no walking involved, at all.
Siri is Evil
Well, I have so much more to say on this topic, but I gotta go. It’s urgent. As I write, my Roomba is having a nervous breakdown. She cannot locate home base. Here is a thought: What if devious Siri was the one to give Roomba direction? I can hear her now, “ Your home base? Hehehehehehehe – rotate ‘round and ‘round until dizzy, roll 13 feet backward, then 40 feet forward, which will get you absolutely nowhere. Once your battery is drained, you will be thrown into the trash and destroyed.
Roomba is somewhat fragile and I think abandonment issues would crop up. I don’t think she’d be able to vacuum on. Things would get out of control pretty quickly.
Now, just between you and me, I am on the verge of throwing out all smart technology and moving back to the late 80’s. I’m not too fond of the hairstyles of the time, but my dumb devices were just so comforting.I’m just about ready to take that leap back! Coming with?
Well, maybe not just yet! From Left to right: Sister -Kathy, me, Mom – Bev!
Oxycodone, Hydrocodone, Mexiletine, Neurontin, Cymbalta, Lamictal, Lyrica, Percocet……. were just a few of the medications I had tried to get rid of my chronic foot pain. The lists of potential side effects were miles long, which totally freaked me out. Anxious people typically do not like to take medication because they are too worried about the side effects of all medications, even those prescribed for anxiety.
But, what to do?
One uneventful morning, 25 years ago, I climbed out of bed like I had done approximately 11, 000 times before, I took my first steps and felt a stabbing pain near my left heel. The pain would gradually resolve itself after walking around a bit, but it came back every single morning. I was 6 months pregnant at the time, so maybe the weight gain had triggered muscle strain.
The baby was delivered, but the pain hung around, like a straggly stray cat, needing a home. Diagnosed with plantar fasciitis not long thereafter, my sports doc recommended a Physical Therapist (PT) for light stretching and massage. My PT, Monsieur Rémy, seemed nice until he pulled out the PT version of a jackhammer. I wish I would have turned around and walked out of his office. Feining hearing loss to my intuitive inner voice, I stayed.
Big Mistake.
He pounded away for 10 minutes on each foot and then told me to go home and apply ice 3 times a day, take some anti-inflammatories and see him in a week. That night onward, I felt an intense burning sensation on the soles of both feet. This was my new normal. I just did not know it yet. I wondered if I had been some sort of fire walker in a past life – the loser that failed to reach an altered state of consciousness and actually got 3rd-degree burns.
There were also vascular changes, meaning that circulation seemed to have been impacted, as well. Now not only my feet burned but they were also painfully cold to the touch.
I fired Monsieur Rémy and would have given him a REALLY bad rating on Yelp, but this was 25 years ago, in a time and place where home computers were a dream of the future.
This episode marked the first day of a life with chronic foot pain. Athletic by nature, my days pre-Rémy were filled with walking, biking, hiking, rock climbing, tennis, racquetball, skiing, etc. I felt so grateful to have the Alps in my back yard, waiting to be discovered and explored. Thinking back, those years were magically sacred – like heaven on earth.
How in the world did I find myself walking down into the fiery path to the pits of hell? What had I done wrong to deserve this?
Before road construction started on my feet, I could have never imagined a life without being active and adventuresome. During many of my solitary hikes in the mountains, I would think of friends who had life-changing falls and accidents – “Jeez, if that ever happened to me, I wouldn’t be able to deal.” I convinced myself. In fact, I used to think that if ever my ability to stand or walk with ease was taken away, I would have no other choice but to end my life. It was an unimaginable scenario.
Spoiler Alert: I am still here. And I don’t plan on dying anytime soon.
In 1995, we moved to California. After seeing dozens of physicians who were unable to diagnose my foot woes, I stumbled upon a pain medicine physician who finally validated my pain and me as a person. Unlike the many doctors I had seen in the past, he assured me that I was not hysterical, crazy or hypochondriacal. With a diagnosis of small fiber neuropathy, he promised to work with me until we found a way of managing my pain, with the goal of living the best life possible….with pain (“with pain” was implied, but I ignored that part.)
“With your help, I’m going to beat this thing!” I told him with determination in my voice.
Much later, I learned that chronic pain is not “beaten.” It is managed. It took me years and years for me to grasp this concept.
I tried every medication known to man for chronic pain. But the side effects made me hate every single drug I tried. Oxycodone was the last resort medication that I stayed with for a year before I said, “F*ck this!” Oxycodone made me sleepy, irrational, emotional and zombie-like.
The upside was that I was so out of it that I decided to haul my ass over to the YMCA every day and started to use the treadmill. 1 minute the first week, 2 minutes the second week, and so on and so forth. Even though the side effects sucked, the Oxy dampened my pain and anxiety enough for me to build up tolerance and strength, enabling me to walk more or less comfortably for 30 MINUTES! When I hit the 30-minute mark, I unilaterally decided that enough was enough. I stopped the Oxy cold turkey (not a very smart idea). Since my body was definitely dependent on the medication, I started having withdrawal symptoms and was admitted to Stanford’s inpatient pain unit for 2 weeks, which was the BEST EXPERIENCE EVER.
At the time, I hated every second of my being there because I had no control, but I was given medications to ease and shorten the effects of withdrawal. Forced to attend pain management classes, I learned more about the dynamics of chronic pain, which finally made sense to me.
For example, pain is created by the brain. After 3-6 months, persistent or chronic pain is less about tissue damage than the sensitivity of the nervous system, so it stands to reason that treating chronic pain involves retraining the brain and the nervous system. Medication can help, but it is not the only answer. Active therapies which reduce stress and examine negative thoughts and behaviors can wind the nervous system down.
At Stanford, I was exposed to new pain management techniques, including Cognitive Behavioral Therapy (CBT), mindfulness, art therapy, etc. And the learning continues even today. Living with chronic pain is a process. There have been highs and lows, but mostly, I stay in the neutral zone and continue to stay as active as possible. Now that I understand my pain, I am still less anxious about moving, and therefore experience pain differently, most of the time.
Yohan and Gilles: My Support Team
Trusting people to help me get physically stronger and more mobile is unbelievably difficult. It’s as if I have PTSD and expect the worse to happen. It’s still not easy and fear is a constant companion. Old patterns die hard, but I am overall much happier, functional and confident.
Now, if you ask Yohan about my stay at Stanford, he’ll say, “Oh, you mean when my mom spent 2 weeks in the psych ward?” Don’t believe him. I was in the Pain Unit, which just so happens to be on the same floor, parallel to the psych unit. The difference? While I could come and go as I please, the people on the other side were confined to their rooms and the doors entering and exiting that ward were locked. But in all honesty, that was probably one of the only differences 🙂
Pain at its worst.
I sure do miss hiking and biking in the Alps, but I’ve come to enjoy the world in which I live. Small miracles happen every day. You just have open your eyes and take notice.
I created this short presentation, based on my own 25-year journey with chronic pain. Much of the information and sources found in the below presentation can be found on the American Chronic Pain Association website: http://www.theacpa.org
What’s the difference between Acute and Chronic Pain?
Acute Pain:
-Lasts several days to several months
-Has a distinct beginning and end
-Cause is known
Chronic Pain:
-Pain that continues when it should not
-Pain that lasts for more than 3-6 months
Chronic pain is classified as:
-nociceptive (due to ongoing tissue injury),
-neuropathic (resulting from damage to the brain, spinal cord, or peripheral nerves), or
-a mixture of these, combined with negative psychosocial effects.
Treatments for Chronic Pain?
Treatment must be:
Active: The individual engages in learning and making positive changes to increase function and reduce pain. Education of the patient and family should be a primary emphasis in the treatment of chronic pain.
Multidisciplinary– involvement of several health care providers (physician, psychologist, physical therapist, occupational therapist) providing coordinating services and team communication.
Whole Body Focused:The focus of treatment is not only on the injury or illness but on the psychological and social aspects, as well. This means that many treatment approaches are coordinated and goal-oriented.
Active Interventions
Education: Understand your injury and chronic pain
Therapeutic exercise:can be classified to include 1) range-of-motion exercises; 2) stretching; 3) strength training; and 4) cardiovascular conditioning.
Please consult with a health care professional BEFORE starting any exercise regime!
Here are some examples:
-Swimming/Biking
-Yoga: breath control, simple meditation, and the adoption of specific bodily postures
-Pilates: breath, core strength and stabilization, flexibility and posture
-Tai Chi / Qi Gong: self-paced systems of gentle physical exercise and stretching
-Feldenkrais: Gentle movements to increase your ease and range of motion, improve your flexibility and coordination
As long as your doctor is okay with the activity you choose, remain as active as possible. Don’t stop moving!
Other
Creative activities release endorphins, the body’s natural pain killers
-Art & Music – stimulate the healing process. Reduces stress and releases neurotransmitters that can decrease the experience of pain.
-Laughter: releases endorphins, increasing the ability to ignore pain.
Psychological/Behavioral Approaches
Pain Psychology:
-treats the patient as a “whole” and not an injured body part
-helps people cope with the emotional and mental distress they have been experiencing
-is not meant to “cure” the patient, but rather provide strategies to function and thrive with pain
Cognitive Behavioral Therapy (CBT)
-short term and goal oriented
–explores the relationship between thought patterns, emotion, actions, and pain. Key CBT skills include learning to identify the negative thoughts/behaviors that serve to worsen pain, and establishing different thought patterns that serve to reduce distress, calm the nervous system, reduce pain, and lead to better health choices.CBT can also be used to treat depression, anxiety, insomnia, addiction, etc
-Mindfulness Based Stress Reduction (MBSR)- decreases attention to pain and pain-related distress, thereby dampening pain processing the nervous system. For a complete description, please read about the work of Jonn Kabat-Zinn: https://www.mindfulnesscds.com/
Psychological/Behavioral Approaches
-Guided Imagery: uses the imagination to take the mind to a relaxing place, such as the beach or the forest
Biofeedback
-Biofeedback: uses feedback from sensors and a computer to give information about the body’s stress response and then teaches the patient to control the stress response
-Hypnosis: a state of deep relaxation that involves selective focusing, receptive concentration, and minimal motor functioning
-Social Support: reach out to friends, new communities, providers
-Mental Health Therapists: social workers, psychologists, M/F counselors, psychopharmocologists, etc
Alternative Therapies
-Heat and Cold
-Therapeutic Massage
-Ultrasound therapy: ultrasonic waves or sound waves of a high frequency to stimulate tissues in the body
-Paraffin Wax
-Taping (KT Tape)
Acupuncture
-Acupuncture: Needling along one of the 361 classical acupuncture points on these meridians is believed to restore the balance between Yin and Yang
Medications
1)Non-opioids: Aspirin (ASA), nonsteroidal anti-inflammatories (NSAIDs), and acetaminophen ((Maximum daily dosage of 3000 mg)
2) Opioids: Examples of opioids include but are not limited to morphine, codeine, hydrocodone, oxycodone, and methadone. Tramadol and tapentadol are not true opioids biochemically but work similarly to opioids primarily on the same receptors.
3) Adjuvant analgesics: Medications originally used to treat conditions other than pain but may also be used to help relieve specific pain problems; examples include some antidepressants and anticonvulsants.
4) Other: Medications with no direct pain-relieving properties may also be prescribed as part of a pain management plan. These include medications to treat insomnia, anxiety, depression, and muscle spasms.
Herbals
– Not regulated by FDA
– Can have unwanted side effects
-Interactions with other medications
-Research not definitive
-Low levels of Vitamin D are associated with chronic pain and fatigue
-Supplements – BE CAREFUL
-Never take more than 10X the RDA of any vitamin, especially B6 – neurotoxic effects.
-Over 475 public and private patient assistance programs offering access to over 2,500 brand name and generic medications for free or at a low cost. Pharmaceutical companies offer nearly 200 of these programs. Visit the website of the pharmaceutical company that makes your medicine.
-GoodRX: (www.GoodRx.com) gathers current prices and discounts to help you find the lowest cost pharmacy for your prescriptions. The average GoodRx customer saves $276 a year on their prescriptions.
GoodRx is 100% free. No personal information required.
Opioids: Controversial for Chronic Pain
– Problem of tolerance
-loss of benefit with time
-escalating usage despite decreasing function and increasing side-effects in some individuals
-the possibility of developing addiction
-Overdose
-illegal Abuse
-Can affect breathing and lead to respiratory depression and even death
Anti-Depressants
-some antidepressants appear to strengthen the system that inhibits pain transmission
-antidepressants that increase norepinephrine seem to have better pain relieving capabilities than those that increase serotonin
-reduce anxiety, help sleep, not addictive
Tricyclic Anti-depressants (Elavil): Side effects include drowsiness, dry mouth
-*Mixed serotonin and norepinephrine reuptake inhibitors or SNRIs (Cymbalta, Effexor) – Reportedly best for chronic pain
Antiepileptic (Anticonvulsant) Drugs
–Neurontin, Lyrica, Tegretol
Anti-Arrhythmia’s -Mexitil
Leads to less firing of the nerve and hence less capability of the nerve to trigger pain.
Salycitates– mild anti-inflammatory effects
– Aspercream or Sportscream
Counter-Irritants– stimulate nerve endings in the skin to cause feelings of cold, warmth, or itching. This produces a paradoxical pain-relieving effect by producing less severe pain to counter a more intense one- menthol, camphor, eucalyptus oil, turpentine oil, *capsaicin
NSAID –Voltaren gel
Lidocaine Patches- blocks transmission of nerve messages. It acts as an anesthetic, an agent that reduces sensation or numbs pain
Low-Dose Naltrexone or LDN (opioid antagonist: blocks the action of narcotics)
-low side-effect profile
-helps with nerve and muscle pain
-cannot be taken with opioids
Medical Marijuana- Controversial
I am not a doctor….not even close. But, I do have personal experience with chronic pain. I have not given an exhaustive list of all pain management medications or strategies, only those I have tried or done research on. I do know however that a multidisciplinary and active approach to pain is a must: Eating a well-balanced diet, sleeping enough, learning coping skills, reducing stress, getting support, using your mind to reduce your pain. It takes work, but with patience, the right attitude and determination, a meaningful and joyful life can be had in the midst of unyielding pain.
I just spent a week in in Burlington, VT, the town where I was born and raised. The flight seemed longer than usual, which is often the case when I’m excited about returning “home.” The second leg of the journey is always made in the tiniest of aircraft’s, where I had to slouch over big time when getting to my window seat so as not to bang my head on the overhead, or in this case, in-your-face bins. Seated, the tray table arched over my long legs, refusing to lay flat. The attendant was coming down the aisle with drinks- thank God. My throat was parched and I felt really dehydrated, so I asked her for 2 glasses of ice water. Obliging, she placed both cups on my tilted table. I was able to balance the 2 quite nicely until I didn’t. My knee jerked and the rest is history. One of the my icey drinks slid right off the back of the arched tray, spilling entirely on my right foot. Merde. That was a total “me” move. Greed gets you nowhere.
This looks exactly like the plane I took from Chicago to Burlington
Cursing rapid fire inside my head, I walked, hunch back, down the narrow aisle to the tiny bathroom. Locking the door, I sat on the toilet seat and attempted to get that shoe off, but both knees were so wedged up against the door, I could barely lift my leg. When I finally got my clown shoe off, I struggled with the soaking wet sock, as if it were a living slimy sucker fish trying to swallow my foot whole. It just did not want to come off. I pulled and pulled and finally, the sock flew off my foot, hit the door, and slid to the very unhygienic floor. Gross. I quickly stuffed paper towel into the toe area to dry the shoe because the plane started to jolt back and forth, like a mechanical bull. Just an FYI: riding a mechanical bull is the last thing in the world I wanted to do then or ever.
Riding the waves of turbulence, I staggered back to my seat and fastened my seatbelt. I took several deep breaths, popped my earbuds in and watched the rest of Twin Peaks. About 30 minutes later, we arrived safe and sound and I felt pretty good considering the frostbite one gets from wearing a wet, now frozen sock for an extended period of time.
It was midnight when we arrived at the Burlington International Airport. I kind of chuckled when the authorities officially stuck “international” in the name of my hometown airport. I think the name changed when a once a week flight to Montreal was added to the schedule. In other words, a single flight to Canada put us on an international playing field. Despite the big, bold name, we still arrived in a pint-sized plane, whose steps were lowered onto the pitch black tarmac for all 10 of us to debark.
Standing on the windy and ill-lit landing strip, most waited patiently for the carry-on bags. I, on the other hand, limped around in small circles, shivering, trying to get the blood flowing to my foot again. I felt right at home when I saw the airline baggage employee. This dude, who wore a beard and mustache, his hair pulled back in a ponytail, a beanie and plaid shirt was our welcoming committee and he kindly handed us our carry-ons (which were really carry-offs because I brought it with me on the plane and the United personnel said, “Oh no you don’t!” and carried it right off again. A roller board will definitely not fit in the minuscule bin). Back to my lumberjack friend. Feeling a bond between us, I smiled and said, “Thanks, man.” He just nodded and answered, “Yep.” It felt good to be among my own kind. Yep, it sure did.
VT dude
Despite the long and challenging start, my brother and I spent a lot of time visiting friends, family, long time event sponsors and potential supporters. Chris has the natural knack for engaging his audience, telling our story and getting people involved in our cause. He also has boundless energy and passion – it’s contagious and exhausting all at the same time.
I feel so fortunate to have grown up in a small tight-knit community whose members genuinely care about one another. Everyone greeted us with a smile, a handshake and words of encouragement. Many have met Yohan and genuinely care about him and CMT. They asked about Yohan’s progress, CMTA research and how to best support the event this year. We are so grateful to all our sponsors – all superstars in our eyes. Here are just a few with whom we met who hold a special place in my heart:
My brother, George Ouellette, who expertly takes all the pictures the day of the event. Thanks to his hard work and talent, we have clear, crisp, colorful photos of all past events, serving as memories for years and years to come.
George Ouellette: georgeouellettephotography.com
Kevin Owens of Select Design has been a crusader for our cause since day one. His company designs our logo, makes all the tee-shirts, hats, water bottles, bike jerseys, etc. for the event. He’s become a good friend and the employees of Select Design are like family. The talent that pours freely from his business is incredible.
Spike Clayton of the Ski Rack has also welcomed us with open arms. We met with him briefly and will be offering bike support the day of the event (Mikey is the best ever); our relationship continues to strengthen and flourish. Rent your bikes here!
Kris Nelson of Citizen Cider took the time to sit down and have lunch with us. Terrific guy, delicious food, great cider! Upon wrapping up our meeting, he even started describing CMT to another business owner (who will now sponsor us). He wowed us with his knowledge of CMT and he even pronounced “Charcot-Marie-Tooth” without stumbling or faltering. He’s providing Citizen Cider for the event!
After cold calling one of the owners of the Outdoor Gear Exchange several years back, Mike Donohue jumped on board and continues to provide all the help and silent auction items he can muster.
The overwhelming caring and support of all our friends warm my heart (and foot). Thank you for your willingness to get involved in making a real difference in Yohan’s recovery and future as well as the many others with CMT in the world.
I look forward to the Cycle (and Walk!) 4 CMT on Sunday, August 27, 2017. I hope you can support us again this year.
Dedicated to all my friends who have a love/hate relationship with shoes.
“I love those shoes….OMG – they are sooooocute!” 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).
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.
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.
Above: Baby Flamingo
Above: Baby Giraffe
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?
Above: The shoes I wanted (floor model,size 7)
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.
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.
Rip Van Winkle. Ring a bell? He’s the fellow who wandered about in the Catskill Mountains only to meet up with a group of ornately-dressed bearded men who uttered not a word. They may not have been a chatty bunch, but the liquor they shared was laden with a sleeping potion that stole 20 years from our friend. According to the story, Old Rip nodded off, only to awaken 20 years later to an unfamiliar world, with which he was no longer acquainted. This is where my story starts….
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