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.
The pizza had just arrived. Before I could take my first bite, the subject of my husband’s company cocktail party surfaces. “Thanks, but no thanks. I don’t want to go,” I say with steadfast determination. “I’ve already made sure that chairs will be available,” he counters, attempting to make the event seem easy, cozy, attractive even. Then, as he points at me with the tip of his piping hot slice of pepperoni pizza, he gets all serious and a little pouty. “Look, I run the company. It would mean a lot to me if you came. My staff and colleagues are looking forward to meeting you. ” On the inside, I roll my eyes, feeling a little irritated that some of the melted cheese from the pizza was still stuck to his face. If I’m not there, who will make sure he wipes off his chin, which was now dripping with grease and mozzarella?
Resigned, and feeling slightly manipulated, I agree to join in on the merriment.
Gilles’ mom once told me that sometimes you just have to do things you don’t want to do, like get a root canal, euthanize your pet lizard or unplug the toilet. And, going to this cocktail party was right up there in the category of things to avoid.
At cocktail parties, everyone usually stands around with a drink in hand, eating hors-d’oeuvres and chatting. I’m all good with the chatting and eating part. I also enjoy meeting new people. It’s the standing around that is the most difficult. When it hurts to stand for more than 5 minutes because of nerve pain in your feet, it is hard to feel relaxed at these events.
After no more than 5 minutes after our grand entrance, my anxiety rises and I desperately scan the room for a chair or something to lean on. Rocking back and forth, relieving pressure first on the right foot, then on the left, the right, the left, I wondering if the other guests are noticing my discomfort. So as to not look too silly, I even start bopping my head and swinging my hips to the beat of the music, as if I were lightly dancing and really into the melody. (This probably made me stand out that much more, but at the time, it seemed reasonable.)
10 minutes is my max tolerance before I excuse myself from whatever superficial conversation I am engaged in and plop down right into the arms of my new best friend- the chair. Thank God – the pressure is off of my aching soles. I wave to Gilles, just to show him where I’ve landed. Colleagues in tow, Gilles slowly makes his way toward me and over the noise, the music, the laughter, I overhear, “…… foot problems……can’t stand too long…..pain.” One of his cohorts, wearing a glittery cocktail dress and 10-inch heels chimes in, trying to relate to my situation, “Oh, my feet are killing me too! Ouch! I just have to slip these off….what women wouldn’t do to look their best! Staring down at my bulky size 10 (mens) hiking shoes, I could not take it anymore. “OMG, can we leave now?” I pleaded to deaf ears. “I just can’t relate to these people and they obviously can’t relate to me.” But, my protests were drowned by the noises of background laughter, glasses clinking and live, blasting music.
Loving the comfort of my chair, people politely stop by to say hi, but no one really wants to sit with me. Why? Because it is a COCKTAIL PARTY and people STAND at cocktail parties. As a seated attendee, engaging in casual or meaningful conversation with a standing guest just translates into craning of the neck in an upward position for an extended amount of time. The result? A trip to the chiropractor’s the following day. So, to bypass unnecessary appointments and self -afflicted neck pain, I set my gaze forward, looking straight in front of me. From this vantage point, the scenery is mostly just crotches and belt buckles. That’s exactly what I wrote – crotches and belt buckles!! Yep. Can you say, awkward? What’s worse, if the room is crowded, intimacy is quickly forgotten with up-close views of back pockets and butts. Feeling pretty helpless, I just end up praying that no one passes gas too close to my face. Escape would be difficult.
I usually get a few stragglers who spend some time talking about how mean Gilles is as a boss (just kidding), but mostly I pretend to be really busy on my phone, answering urgent messages, texting and making note of some vital, earth-shattering information.
I’m usually overjoyed when it is time to leave. Another holiday party over. Check! In all honesty, I think I would have rather unplugged the toilet.
There is no moral to this story, but here are a few thoughts:
If you want to see crotches and belt buckles up close and personal, attend a cocktail party. Make sure to sit for the entire duration of the party so you’ll be able to relate to my experiences.
Feign sickness and just don’t go to standing only events. Stay home, watch a movie and cuddle with your cat or dog. It’s much more relaxing and the therapeutic value is undeniable.
Ever had to use a wheelchair to get from here to there? Now, I’m not talking about temporarily using a hospital wheelchair to nurse a broken toe or to be wheeled out of the maternity ward after having a baby. I’m talking about relying on a wheelchair to get around for an indefinite amount of time because walking is too painful, extremely hard or simply not possible.
When I was pregnant with Yohan, I developed plantar fasciitis. It was 1993 and we were living in France at the time. My french PT chose to implement jackhammer “massage” therapy on the bare bottoms of both feet to loosen up the tightened fascia.
He turned on the pummeling device and went to work for what seemed forever on the right foot: GRRAKKA KKAKKAKKAKKAKKAKKAKK AKKAKKAKKAKK AKKAKKAKK AKKA KKAKKA AKK (OW, OW, OW), and then the left: GRRRAKKA KKAKKAKKAKKAKKAKKAKK AKKAKKAKKAKK AKKAKKAKK AKKA KKAKKA AKK (Double OW, OW, OW). It really hurt but I figured, “No Pain, No Gain” right?
WRONG!!!
Long story short, from that day forward, 24 years ago, nothing will ever be the same. My life had forever changed. My brain translated the pulsating vibrations as a threat, leaving the soles of my feet to ache, burn, freeze, stab, and just plain hurt. I no longer count the years, but the memory and the pain are forever etched in my feet and in my heart.
3 years later, Yohan, Gilles and I moved to California and my feet were still killing me. I tried everything, and I mean everything to alleviate the constant discomfort: acupuncture, medication, nerve blocks, psychotherapy, Tens, myofascial release, creams, gels, patches. Nothing worked, so after a lengthy and heated internal debate (the reality of using a wheelchair scared me), I purchased a custom-built wheelchair.
Here are just a few highlights from the first year or two:
“Oh dear,” laments an eighty-something-year-old in the grocery store. As I look up, she was peering down at me, pursing her lips and shaking her head slowly from side to side. “You are just too young to be in that chair.” Um. No duh, but I am, for now, and by the way, why am I even talking to you?
“Hey, this looks FUN!” yells a “friend” as he unexpectedly grabs the push handles in the back of the chair and starts to zoom me down the street, swiveling erratically to the right and to the left. He thought he was brightening my day, adding a little zest to my boring existence. Careening down the street, I was furious with my helplessness, vulnerability, and especially Monsieur Rémy. The guy who was pushing me around? We are no longer friends. He’s dead to me.
“Well, Heeellooooo Sunshine!” singsongs a salesperson at Macy’s. How are you doing today? she asks, enunciating every syllable with exaggerated grimaces which made me wonder if she thought I was deaf and had to read lips to communicate. Then she simply turned to my sister and asked if there was anything in particular “she” needed, referring to me. Oh, I get it, she assumed that I was mentally and physically disabled. You have got to be kidding me. Her strategy: avoid all eye contact with the sitter and go with the stander, the one “in control” and who looks the most normal. Normal must be in the eye of the beholder because on that particular day, my sister, Kathy, was dress as a blueberry…really. She was drumming up business for her summer business, Island Blueberries.
On another note, if you don’t get killed, some of the following situations could be translated as funny…..years after the fact.
This is the real Kathy.
Kathy, bless her heart, always volunteered to push me around downtown Burlington when I visited in the summer. Going into the mall, Kathy grunted several times in an effort to get the front wheels of the chair over the seemingly extra tall threshold (bottom of door frame). She pushed once (Hey, that was my back!…don’t use your knee!), she pushed twice and the third time….SCORE! The wheelchair unexpectedly jerked over the doorframe with such force that I fell forward, right out of the wheelchair and onto the cold, hard floor!
.
That very afternoon, I Googled: manual wheelchairs + seatbelts+ overly enthusiastic sister.
On a different day, we encountered yet another obstacle. The wheelchair ramp to the store in question was short and steep. It looked something like this:
Going forward was out of the question, so Kathy, with all her might, pulled me into the store backward. Gravity was pulling me forward (I had not yet received that damn seatbelt). It felt like I was going to tumble out of that chair, and roll into the street. She got me to the top of the ramp and wouldn’t you know it…the bottom of the doorframe was again, extra high (What is it about buildings in VT?) I pleaded with her to just leave…it was not worth the trouble, but my sister does not back down when facing a challenge. And she rarely listens to me, so I held on tightly, trying to shift my weight backward. Then I heard 2 employees scream, “WE’VE GOT HER!” and before I could say, “this is really embarrassing“, one woman helped my sister pull, when the other suddenly appeared in front of me, and started pushing the arm rests to get the chair into the building. With three people pushing and/or pulling, we made it into the store, but I had had it, I was done shopping for the day.
Today, we laugh when remembering those mortifying incidences, but to those who experience similar or worse situations daily, it’s really frustrating. Here are just a couple of tips when interacting with a person with a disability:
Respect Personal Space-many use mobility aids, so don’t touch, use, lean on or move the person’s wheelchair, walker, cane, etc
That hairy tarantula crawling around the ranch the other morning would have, by definition, freaked out anyone who suffers from has arachnophobia, a fear of spiders. While it was basking in the sun behind a tire’s worn treads, I so wanted to put it in my palm and pet it, but before I knew it, someone had scooped it up into a bucket and displaced it into a secluded grassy area, away from me and the lethal parking lot.
And come to think of it, one of the last times I impulsively picked up a feral, furry animal, it bit me. Thankfully, that scraggly rat did not have rabies, or I would have been whisked away to the nearest hospital receiving treatment for rabies which, at the time, included 21 injections, with very long needles, into my 10-year-old abdomen.
I am not afraid of 8-legged creatures, but after reading yesterday’s news, I just might reconsider my position. “Invisible Bugs In Kansas City Are Jumping Out of Trees to Bite People, read the headline of the Wall Street Journal. Apparently, it is oak tree itch mite season in Kansas City, MO and these microscopic arachnids are pouring out of trees and landing on people, making their lives an itchy living hell. Arachnophobes-beware! Don’t hang out under oak trees in Missouri.
Oak Tree Mite
The next news story, Creepy Clown Craze Sweeps the Globe, peaked my interest. I do not suffer from a fear of clowns (coulrophobia)…yet, but if I keep reading the news, I may have to ask for a lifetime prescription for Valium.
While we are on the subject of phobias, here is how I addressed my new-found support group of phobic cohorts: “Hey everyone. My name is Elizabeth and I’m afraid of inclines.” Inclines? Yes, inclines, also referred to as slopes, ramps, hills, gradients, or ascents. “Welcome, Elizabeth,” they all chanted in a monotone kind of way.
There is a word for my malady. It’s called bathmophobia. For over a decade, this phobia has severely limited my ability to function well in this world. I avoid walking on even the gentlest of slopes. I’ll walk backward up a hill, but no way will I attempt to walk forwards. Sounds weird, right? Well, if you’ve ever seen me walking backward up the jetway to the airport terminal, it looks even weirder. People stare, make jokes, avoid eye contact and get irritated at my slowness. Generally, I ignore people by pretending to be pulling a very heavy, wheeled carry-on, or feign looking for the rest of my family who has already escaped to the terminal so as not to be associated with me.
20 years of chronic foot pain can mess you up a bit. Over the years my brain has learned to avoid potentially noxious stimulus. Protecting the area of the body that hurts is a normal response, one which is deleterious if left to linger for an extended amount of time. Muscles, tendons, and fascia tighten, and rigidity sets in. My gait has changed. There is little heel to toe motion. My calves are tight. I’ve been walking as if I had big blocks of ice on my already very large, size 11 feet-bang, bang, bang. You can hear me coming for miles away. And you wonder why you never see me in a dress!
Up until now, I’ve been half-heartedly facing my bathmophobia. Like everything else in my life, if the consequences are not dire, the task or challenge will most likely remain at the bottom of my never-ending list. Here’s the thing – Gilles and I own horses who have to move to a new pasture soon, a pasture where I will be faced with a 6 percent grade incline. Oh my……
A little bit about Athos: He is more canine than equine. Initially, Athos belonged to Yohan who discontinued riding because of CMT-related fatigue and pain. Then, I started looking after him and he quickly became my primary reason to get up early in the morning to walk and exercise. Athos, lacking the 2 inches necessary to earn the title of horse, is technically a pony (shhhhh, don’t tell him), but he thinks he’s a Clydesdale, or maybe a Great Dane, depending on the day. I ride Athos too, but standing 5’9” tall, with daddy longlegs limbs, my ice blocks nearly touch the ground when I get on his back. I can almost break with my frozen heels…..no joke!
He loves kids, and kids love him. He is particularly fond of my 9-year-old “niece”, Bella, and vice versa.
:
Athos loves performing. In fact, he’s clicker trained and knows a lot of tricks, from nodding his head, “Yes” to pushing a ball around the arena to picking up sticks and retrieving. Athos will do almost anything for a carrot!
Watch the video below where Bella and Athos are playing!
So, I need to get moving in the upward direction. I have my mind set on conquering the 6% grade hill below (it’s steeper than it looks, folks). It’s become my Everest, my K2, my Annapurna. If I can do this, I can do almost anything I put my mind to. I’ll keep you posted.
PS: And in the meantime, stay away from 8-legged creatures, clowns, and oak trees!
When I received my first pair of eyeglasses in the fourth grade, a vivid and surprisingly clear world unfolded before me. I could actually make out the facial features of the people across the street. Each leaf had a shape, a form, a color, and an outline. Birds in the sky were no longer blurry, flying blobs, but creatures with discernible wings and beaks. I was SO excited… until I walked into school the next day.
“HaHaHahaHahHa,” my “friends” jeered and pointed as I walked into the classroom. “Hey four-eyes!” they howled. “Whatcha’ got there? Coke bottles for glasses? HaHaHaHaHa.”
Message received: Eye glasses were for losers.
Within a split second, I decided that I could see just fine. I put those spectacles in my desk and squinted the rest of the year. If only my dad had allowed me to get those round, John Lennon-style, wire-rimmed glasses my 17-year old half-brother wore. But, there was “no way in hell” (his words) his 9-year old daughter was going to look like a 17-year old hippie or rebel British pop music icon. I came home with very square and dorky tortoise plastic rims. I hated them. By fifth grade, I was wearing contacts.
Which do you prefer?
These? These?
While my eyes were dilating in the ophthalmologist’s waiting room today, remnants of the past hit me right upside the head. I started to get a headache and put my sunglasses on to shield my brain from the light shining through the window of my extra-large induced pupils.
The first part of eye exams always stresses me out. First, the doctor puts the super-complicated, multi-lensed mechanical “glasses” in front of my face, directing me to look at an eye chart, one eye at a time. My ophthalmologist systematically flipped the lenses in front of my eye until the letters were more or less visible. “I see an A, then a G, no wait, that must be an O. Hold on. Is it a Q?” I hesitate. Instead of responding, he answers my question with another question (don’t you hate people who do that?).
A Phoropter is the name for the big, mechanical, multi-lensed monster.
Here is the conversation that ensued:
Doctor: Looking at that same line of letters, which is clearer, #1 or #2?
Me: Honestly, they looked about the same. If I have to choose, I’d say, ummmm, #2 is clearer.
Doctor: Okay, how about now, #1 or #2, as he flips the lens once more?
Me: Uhhhhhh, can you do that again? I think I heard him sigh.
Flip flop, flip, flop, clicks the lenses.
Doctor: #1 or #2?
Me: I don’t like either of them. Is there a #3?
Doctor: No, there is no #3. Look again, #1 or #2? Which is clearer?
Me thinking: OMG. #1 and #2 are so close. I can’t see a difference. I don’t know. I can’t decide. This is way too stressful. Enough is enough.
I peeked around the machine and looked my doctor, quite appropriately, right in the eye and admitted, “This exam is making me anxious. What if I choose #1 and the right answer is #2, and then my prescription comes out all wrong? I cannot be responsible for my vision mistakes. I’m here because I cannot see. You’re the eye expert, not me.”
He reassured me that this part was really only a matter of personal comfort, and tried to calm my fears. “Don’t worry, we’ll get it right.” Then he simply pushed on with the exam which makes me even more anxious.
The next device of torture is called a tonometer, measuring eye pressure.
As I placed my lower jaw on the chin rest, he told me to look at his ear while the miniature gun came closer and closer to my eyeball. The thoughts in my head became louder and louder, “How close is he going to get? What if he misjudges and pokes my eye out. What if I sneeze and poke my own eyeball out. Is he going to puff air into my eye?”
I mentally closed my eyes and waited for something to happen. Before I knew it, he was on the other eye and when he was done, both eyes were still intact. Just for effect, I did ask him if he’d ever poked someone’s eye out with that thing. He answered in the negative, “That would be bad for business.” Yeah, it would be bad for someone’s eye too!
I was not happy when he handed me my prescription: -8.00 in the right eye and -9.25 in the left, which translates to: you are still a loser and blind as a bat, to0.
Before I left, I asked if he did eyeball transplants. He looked at me as if he were thinking, “Why are you still in my office?” But he humored me and admitted that the eyeball transplant technology has not yet been invented. Then he warned, “In any case, if you do hear of doctors performing the procedure in the future, don’t be the first in line. That’s never a good idea.”
Fair enough.
Now I have to decide if I want bifocals, progressives, or two separate sets of glasses, one for distance and one for reading. Since I don’t like change, I probably will do nothing and continue to push my glasses to the end of my nose when I need to read. Who needs to see clearly anyway?
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