Foot surgery

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

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

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

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

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

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

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

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

 

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

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

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My Brother, Anand

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As the video pans out, pain sears through my body as I watch him “walk.” Feeling somewhat queasy, I cannot take my eyes off from this young man living in Kolhapur, India as he carefully crosses the colorful and well-kept room with his thin CMT legs and horribly twisted feet. Each cautiously placed step reveals the soles of his feet, which are perfectly perpendicular to the opposing ankle. I’ve seen bad cases of supination, but it looked like his feet just decided to fold to the inside, forcing the tips of his tibia and fibula to bear his weight.

His hands are also terribly affected by CMT. A close-up reveals clawed fingers, stubbornly bent, refusing to move. Managing a few callisthenic-like arm movements, it becomes apparent that CMT has also ravaged his hands, leaving them weak and atrophied.

 

His email, video attached, found itself in my inbox.

Jan 30, 2013

Dear sir/madam

As you know I have CMT & I am from India. There is no awareness about CMT compared to your country. So please give me information on what type of care should I take. What type of exercise should I do? What type of shoes should I  wear?
Please help me. I am forwarding my video clip.

Anand Pramod Patki

 

I immediately emailed him. From that day, 4 years ago, Anand has become a close friend….my brother.

His story goes something like this: Anand started showing signs of CMT at 6 years old. His toes started to claw and the muscles in his lower legs were weakening.

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Anand – Age 6

 

By the age of 10, he was unable to stand upright in one position for more than 2-3 seconds without losing his balance.

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Anand – Age 10

He was 15 years old at his sister’s engagement party, but he could no longer walk long distances as his feet started to curve inward.

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Anand – Age 15

 

Despite the challenges of living in India with a physical disability, Anand finished high school and even received the 2nd highest grade on his high school board exams. A writing aid was offered, but Anand refused, insisting on independently write the answers to a grueling 3-hour long exam.

Officially diagnosed with CMT at age 20, his neurologist outright told him: “There is no treatment and you will become weaker and weaker.” With limited resources, information or support, Anand found the strength to mentally accept the diagnosis, and to retain a positive outlook on life.  He had a supportive family, parents, intelligence and deep inner fortitude.

When he reached out to the CMTA, he had been working as a computer operator at the Postal Department in India. There is no Americans with Disabilities Act (ADA) in India. To keep his job, and to make up for his slower than average data entry work, he had to work continuously for more than 8 hours at a time, without the luxury of a single break. Even the bathroom was off limits. Even if he had had the time, handicapped bathrooms are few and far between in India.

Yet, Anand emphasized, “I am enjoying my job. At this stage, I cannot walk without support on hard surfaces. I face a lot of problems performing my day- to- day tasks, like buttoning my shirts, wearing my shoes, counting cash, handling vouchers, inserting paper in the printer, etc.  I’ve also had a chronic ankle injury for the past five years. But, I am happy in my life. I have no complaints with my God.”

I communicate frequently through email and Skype with my Indian friend. Each correspondence brings us closer. I marvel at his optimism, boyish grin and resolve to live the best life possible despite all the obstacles he faces every single day.

But what could I do? Except for Anand and his family, I know no one in India. His town of Kolhapur is a mere 8,500 miles away from where I live in California.

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Yet, as we wrote back and forth, the possibility of foot surgery was discussed. Even if we did stumble upon an orthopedic doctor, would he be able to correct Ananda’s feet?

After months and months of searching, I turned to Dr. Glenn Pfeffer, who put me in contact with Dr. Rana, a well-known orthopedic surgeon who practices in New Dehli and was willing to take on this complex procedure.

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Dr. Rana

 

With the precious support of my colleagues on the CMTA’s Board of Directors, Anand was given the opportunity to have a potentially life-changing surgery.

2 years after meeting Anand, surgery was scheduled for April 18, 2015. Dr. Rana would perform a triple arthrodesis (fusing the three joints in the hindfoot) with Achilles tendon lengthening on each foot, one week apart. To get to New Delhi, Anand took his first-ever plane ride with his Baba (father), after which he enthusiastically wrote: “I was feeling like a free bird who flies in the sky!”

The surgeries went well, but there have been some complications due to low bone density, pressure sores, and screws not wanting to stay in place. Anand has waited patiently while healing and has had to undergo several smaller procedures to remove those uncollaborative pieces of metal.

With the help of thick plastic leg boots, today, Anand is able to walk on the soles of his feet.

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Watch this:

 

 

When he went back to work, his colleagues were thrilled to see him and stood, applauding his return. In 2-3 months, the braces will be exchanged for lighter, more user-friendly AFOs. The day that he is able to put on a pair of shoes, will be the day that we celebrate and consider the surgery to have been 100% successful.

Skype has been a wonderful tool. Virtually I have visited Anand in India and he has spent time with us in California. Yet, virtual reality will never be on par with being able to physically hug my brother, sit next to him, enjoy a meal, laugh, cry, talk. My dream is to visit him in Kolhapur. And I will and look forward to the day we can walk, arm in arm, down the street with my brother.

 

Anand’s Words of Wisdom

As you can see, I am getting weaker and weaker physically, but becoming stronger and stronger mentally. I cannot tell you that you will be victorious over your CMT, but you can manage the degeneration process of CMT by following these steps:

  • Always think positively.  To train your mind to think always positively is essential.  I believe in God and I also believe there are positive waves in nature.  So, you can change your life with positive thinking.
  • Remain hopeful. Don’t feel sad in your life. Our scientists and researchers are doing a lot of experiments on CMT. I know in next five years, we will get very close to making a world without CMT.
  • Don’t think of yourself as disabled. You are ‘specially- abled ‘. I know we cannot do much about our physical capacity, but you have a normal brain. Use it with your full capacity. Be honest and work hard in your job or field and try to become specially- abled .
  • Thank God. Don’t curse your God because God has gifted you with a super brain. Use it as your sixth sense. God has gifted you with normal eyes. Use them to see beautiful and good things in your life. Be satisfied and happy with what you have. Do not feel  badly about what you don’t have.
  • The most important thing is to maintain your physical capacity and try to improve it with proper exercise. For me, Yoga is the best option to improve my muscle flexibility.

Isn’t he somethng?

 

“FEEL” is a 4-Letter Word

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Yohan’s Foot Surgery #19

 

 

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I hear voices. Eavesdropping, as if I were an innocent bystander, I witness the back and forth volley of words, arguments, and reasoning. Often, I put a harsh stop to the banter, for fear of losing too many precious minutes to internal disputes and emotionally draining debates. Trying to reach my neutral, rational space often feels impossible, like I’m swimming against a strong current intent on overwhelming my frantic efforts.  Yet, somehow, someway, I usually manage to quiet the noise, at least temporarily, and transition into a state of calm deliberation, frantic activity or self-imposed numbness.

Yohan had his first ever foot reconstruction surgery in June and 8 months later, he’s still not walking without using crutches or a knee scooter (see previous blog posts for the whole story). As soon as he starts to put full pressure on his foot, sores develop.

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When that happens, staying off the foot until it heals is the remedy. To offset the pressure, he had his shoes modified, new orthotics made, which were adjusted again and again and again, only to have the sore reappear when weight-bearing.  I know that all surgeries do not go as planned. You probably also know that surgeries are risky, in many, many ways. But I thought the surgeries that went awry happened to other people.  But this time, Yohan is that other person.

The holidays came and went, and in January we found ourselves at a standstill, not knowing what direction to turn. The last pictures I sent to our surgeon showed how Yohan’s foot had healed, and it did not look right.  For some reason, his heel looked misaligned, causing excessive pronation and weight distribution imbalance.  Our surgeon, Dr. Pfeffer, was perplexed, but to his credit, he’s promised to make it right. Putting ego aside, Dr. Pfeffer is determined to make the next surgery the “last surgery” by asking for second and third opinions from well-respected colleagues.  He wants to make 100% sure that no rock is left unturned before going back in to correct the lopsided foot and straighten Yohan’s toes. His humility, commitment, and compassion command our genuine respect.

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Left Foot After Surgery

Nevertheless, I dread this second surgery. I just want Yohan to be able to walk with ease, even if it is only short distances. And in all honesty, I may have felt, if only for a microsecond, discouraged, angry and saddened by all the challenges Yohan’s already faced throughout his 23 years on this planet, due to the effects of CMT. He complains rarely and manages his day-to-day with laughter, humor, and hope. Yet it is difficult to witness his debilitating fatigue, chronic pain and now, successive surgeries. I wish it weren’t so, but it is so and that’s what is true.

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In general, I tend to live in my head, not my heart. Why open up to intense emotion, when the risk is getting sucked up into a vacuum of never-ending despair and misery? When my thoughts become dark, the voices in my head try to cheer me up, scold me for being negative and/or neutralize the negative with positive thoughts. This process has become so automatic that I often no longer know what I feel inside. Many believe that raw emotions, in all their complexity, are an undeniable part of the human experience, serving as a profound source of inner guidance and direction.

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Yeah, well my inner feeling mentor acts more like a sneaky stalker than a trusted ally, ready to pounce when I am least protected. I’d rather stay in the neutral zone and avoid the war-torn areas of my life. Yet I often wonder where those intense feelings go. Do they evaporate? Remain in the body unexpressed and ignored until the pressure builds so, they just explode? Do feelings have feelings? So many questions, so few answers.

The second surgery does not yet have a date, but it will be soon, in the near future. We’re all doing our best and trying to live in the moment. We’ll get through. Thanks for listening. And if you have a moment, let me know how you cope through difficult times. You never know, your advice and feedback may just be of help to others someone else.

My Name is Not Grace

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

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

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Above: The Complimented Shoes 

 

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

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Above: Me, Age 5, Patent Leather Shoes

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

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

 

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Above: Baby Flamingo

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Above: Baby Giraffe

 

 

 

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Above: Fliraffe (a giraffe with baby flamingo feet)

 

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

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

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

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

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Above: The shoes they brought out (size 12)

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

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

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Above: My body and feet

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

Just an FYI: CMT SUCKS

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Yohan’s Foot Surgery- #16

Thanks to all who have asked for an update on Yohan. I’ve been all caught up and preoccupied with the best-selling book, “101 Practical Tips for Dealing with CMT”.  If you have not ordered one, do so once you’ve finished reading this post. As a bonus, we are shipping all the books priority mail through December. So if you buy your copy by Dec 20, you will most likely get it in time for December 25. Here is the link:

Thanks to all who have asked for an update on Yohan. I’ve been all caught up and preoccupied with the best-selling book, “101 Practical Tips for Dealing with CMT”.  If you have not ordered one, do so once you’ve finished reading this post. As a bonus, we are shipping all the books priority mail through December. So if you buy your copy by Dec 20, you will most likely get it in time for December 25. Here is the link: http://www.cmtausa.org/101tips

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As for Yohan, he’s more or less become a permanent fixture in our dining room. Every once in a while I’ll stroll on by, dust him off, rearrange the furniture and water the plants. In front of his computer screen, he keeps himself busy with grad school applications, gaming, writing projects, gaming, reading, and did I mention gaming? He’d be perfect at that mannequin challenge which has gone viral over the past month or better yet, he might be able to break the Guinness World Record for competitive sitting (72 hours).

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Looking for Yohan? Look no Further!

The only reason I know he’s still living and breathing is that nasty cough he’s had for the past 30+ days. It almost feels like a game of psychological warfare where he’s trying to make me crack, and all truth be told, he’s succeeded. I’m worn down, my will is broken and I’m more than ready to divulge any and all information I might harbor. Let the interrogation begin!

The last time I checked in, Yohan had been cleared to walk and start PT. His progress has been molasses slow since then. Why? Pressure sores. After a week or two, these sores heal, and as soon as he’s given the green light to resume walking, they break open again. It’s so frustrating!! After surgery and casting, all his hard-earned calluses dropped away, leaving fresh, pink, baby skin. Problem is –  Yohan is 23 years old and he’s totally over the baby skin stage. Like, WAY over.

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He’s had a shoe insert made to relieve the force on the pressure spots. And we’ve been back and forth to San Francisco 3 times in the last month to have the orthotic modified, but we are not there yet. Just this morning, that stupid sore reopened, which means one thing: Stay off the foot and get back on crutches. UGGGGGHHHHH.

Yohan will be seeing Dr. Pfeffer next week for a consultation and we’ll go from there. If we can’t take the pressure off that one spot, he may need another procedure on that foot. No way are we delving into the second foot surgery until he is 95% ambulatory with the reconstructed one. We do not know how long that will take and grad school applications have been submitted for a fall 2017 admission.

Yohan does not like surprises. He yearns for certainty and security. We all do. How do you plan your life when you can’t really plan your life? Message from the universe: Shit happens and you just have to go with the flow. You make the best of what you’re given and deal. It’s definitely not optimal, but what choice do you have? CMT sucks.

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Question: Dealt with foot sores? Share how you managed them!