If I had to pick one pet-peeve I have with having Charcot-Marie-Tooth (CMT) it is the annoyance I get when I see people staring at my feet. Then, they look up at my face back to my feet and back to my face. I’m like “really?” Yes, my feet are turned out! Yes, it is difficult or challenging to walk. Yes, you probably have never seen feet like mine. Yes, it looks like I am walking on the sides of my feet. Trust me, I am not. Almost, but not yet. YES, IT IS RUDE to stare. Not only is it rude, it is painful to see someone staring at my feet. Stare at my face instead, it is better looking. If you keep staring at my feet, you will miss how handsome I really am!
So I understand when children do it since some are still learning manners and others don’t know any better because their parents haven’t taught them. The teenagers through senior adults need to re-learn their manners. When you see something unique on another person such as deformed feet, missing an arm or leg, or maybe wounds on someone’s face, think about how you would feel if you were them and people were staring. It is difficult enough to go through life having an obviously less-than-perfect body without the annoyance of stares.
Years ago, you would never catch me barefoot in public. It was heartbreakingly painful to see the stares. Before that, you wouldn’t catch me in public in shorts. So much easier to hide my feet in long pants and shoes.
However, I got to thinking. I love being outside in shorts and barefoot. I love the freedom it gives. Why should I let those who do not have enough manners not to stare stop me from enjoying myself in shorts or going barefoot? So, I practiced not paying attention to those people. Always looking ahead. And, when I see someone doing it, I look the other way.
In case you are wondering, yes, I would love to tell them to “quit staring- it’s rude!” But, I digress. It would be energy not well spent.
I was never, still aren’t, one of those people who get their feelings hurt easily or as some say, “carry their feelings on their shoulders waiting for them to be knocked off!” As a child, I wasn’t quite as thick-skinned as I am now but I wasn’t one those “sensitive” kids either. However, there were, and still are, times when – I get my feelings hurt.
I remember the days of being a young child and how rude other children were. They were often cruel too. I can remember being called names, nothing profane mind you, but still. I remember being laughed at because I could not do most of the P.E. requirements. I ran funny. I walked funny. I couldn’t do pull-ups. I couldn’t do sit-ups. I was always the last one chosen to play on a team’s side. The list could go on. I knew I was different, but, at the same time, I wasn’t sure why. Looking back, I cannot tell you all the things which happened or what was said or done, but it seemed like I was always getting my feelings hurt one way or another. Most of the time, it was something that I could not prevent.
I’m not sure why kids liked to tease me. Sometimes I think it is because I was funny looking or weird but they were too. I just never pointed it out or really paid attention to it. Maybe it was my feet. When I was younger, they started turning and have been doing it ever since!
I remember hoping or thinking that one day when I was older, the teasing, rudeness, and cruelty would stop. Ha! That’s not happened yet. The teasing and annoying behaviors went through college and even my adult years. Fortunately, I learned at an early age to love myself. If I didn’t love me, then nobody else would… and frankly, I really wanted a girl to fall in love with me despite Charcot-Marie-Tooth- but that’s another story for another time. I wasn’t much on hanging out with the guys so I didn’t give that much attention.
As an adult, I find one of the more rude things people like to do is make decisions for me. For instance, they do not invite me to do something because they know I have health issues and do not think I can do it. Well, that’s not for them to decide. A friend would not allow me to mow his yard, saving him time and money, because he was afraid I would fall. I told him it isn’t his fault if I fell and the work is good for me. It helps me to keep moving. Another decided that standing to assist at a funeral was too much for me. That cut deep- really deep. Depending on who it is, I will push myself to do something with someone or for someone because I care about them. Sometimes you have to bear some pain for someone in your life.
For me, my parent’s were a great support. Since I am the oldest, I’m not sure how they knew to tell me they “loved me” often. Somehow, they did. Even on the worst days, when the world would be taunting me, the fact that they loved me often rang in the back of my mind. As an adult, it did too. This fact, I believe, helped me to rise above the others and be more successful in life than if I hadn’t heard that from my parents.
After years of not being asked to do something because someone thinks I cannot do it, rather than asking me if I can or would, being the last to be picked to play on a team, not having much interest in sports because I cannot participate, I have become pretty introverted. I have tried to ignore “being left out” or the “things people do” but it isn’t always easiest.
To me, the challenges of living with Charcot-Marie-Tooth add to the frustrations. There isn’t anything I can do about it so I’ve learned to love and accept myself for what I am. Also, I focus on what I can do instead of what I cannot do. I tend to surround myself with friends who believe in me and will not “stifle” me as so many try to do, intentionally or not. This has helped me to live a happy life.
Of course, getting my feelings hurt is just a part of life. From what I hear, everyone goes through it or has these issues. Learning to get past this obstacle is a challenge but it can be done. I have found focusing on God, the people I love and support me in my challenges and are not obstacles, and, of course, the love of my dog and cat.
Parents love your children and tell them often. Friends of someone with CMT, allow them to be themselves. Help them when they ask or just listen when they need it. Be a friend, not an obstacle!
“A Tired Party Dog” (C) Storyblocks, Used by Permission
Happy birthday to ME! Happy birthday to ME! Happy Birthday to ME! Happy birthday to ME! Every year on my birthday I like to celebrate that I have made it another year walking and enjoying life. I am now 56 and I am thankful for every moment God has given me.
Sometimes with the problems and issues, I have with Charcot-Marie-Tooth (CMT), I find life challenging. It seems there is never an end to them or new problems begin just as I have adjusted to the others. Sometimes I have to find assistance from a doctor. Sometimes it’s a physical therapist. Sometimes both. Oh well, that is the life of the CMT patient.
However, it’s NOT the end of the world. I learned to find the good in every day decades ago. My life is blessed with God, my wife, my dog, and my cat. Just like the past year, I will enjoy the upcoming year as well.
One of my favorites escapes is to visit the Great Smoky Mountains in Tennessee and North Carolina.
I took one of my first really long hikes there and love taking a drive through the mountains looking for landscapes and wildlife, especially bears, to photograph. Of course, be very careful around bears! Know the regulations and law!
What do I like about the Great Smoky Mountains? It’s beauty. Being able to get outdoors and away from all the noise of the city.
Escaping to nature seems to help me incredibly to deal with Charcot-Marie-Tooth. Though hiking is more difficult for me than the average hiker, the trails I can hike are awesome.
There are quite a few things you can do and enjoy at the Smoky’s. To get some ideas, please visit the National Park Service – The Great Smoky Mountains. I will share more about the Smoky’s and other places to visit in upcoming posts.
A friend of mine shared this Scripture with me a few weeks ago. I have several favorites and may have to add this one to mine.
As a man with Charcot-Marie-Tooth which seems to almost change daily, and not for the better, trusting in God and placing ALL of my cares on Him has been the greatest part of my life.
If you would like to learn more about being a Christian, please visit “Peace With God!”
“For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life.” – John 3:16
Today I celebrate the Resurrection of Jesus. He died on a cruel cross on Good Friday and rose from the dead on Easter Sunday for our sins so that we may have eternal life with Him in Heaven.
My Christian faith, the Bible, Jesus Christ, God are the foundations of my life and helps me incredibly with Charcot-Marie-Tooth. I could not handle with the pain, frustrations and aggravations without God’s help all th way.
If you would like to learn more about God’s Plan of Salvation for man, please visit Peace With God.
When I was diagnosed with Charcot-Marie-Tooth, it was in the ‘80’s and I was around 22-years-old. Did I ever have the life sucked out of me!? That moment did it!
As a young man finishing my college degree, the news wasn’t helpful because I had many plans for my life. I was going to find the perfect job in the perfect location and the perfect wife. All of a sudden, these perfect dreams seemed to disappear. The job might come together, but, would a woman want to marry a guy with the physical struggles I would have? My thoughts were not likely.
It was at this point that I began to be depressed. I remember thinking “why me?” “Why can’t I be physically fit like other guys?” “Why can’t something in my life be normal or, at least, not a problem?” I don’t think I ever wished it on someone or would I want to do that. However, I did wish it away more than a few times. I’ve lost count on the times I have done that.
Back in the day, the doctors were not very positive about my future. That was not good. I began feeling like the world was ending and this was it. As I mentioned, I was too young for that to happen. However, the world wasn’t really ending. Yes, the diagnosis was real and the medical world only knew so much about the disease and it sure seemed like it was. But, it wasn’t ending. I have wondered over the years if an emphasis on regular physical exercise, better diet, and nutritional habits would have been more beneficial than telling me what I will not be able to do.
Why? To this day, I can remember what the doctor said I would not be able to do. It was a long list of things. In my opinion, that needed to be shared with me but a long list of positive things I should be able to do should have been shared too. He mentioned that swimming would be good for me but not much else.
Nowadays, I “interview” my doctors. I discuss my overall health and Charcot-Marie-Tooth. I look for someone who is positive and will help me to see the positive in life and my abilities. Unfortunately, I didn’t know about this until I got married (yes, I got married- more in another post). Anyone who has anything to do with my health needs to have the positive attitude of “anything” and “everything” is possible.
Today, I am not able to run. I am able to walk. And, I am able to walk much further than my original doctor of some forty-years ago. I swim, I go places with my wife and dog and we adapt if need be.
Another point I will make is to learn all you can about Charcot-Marie-Tooth. Don’t just take your doctors word or what (s)he says it will do to you. Read and learn. With the internet, that’s a much easier thing to do these days. If it’s too much for you to read and learn about your disease, then have a friend who will help. I had a few girlfriends who helped me to learn more and were an excellent inspiration.
One of the more difficult and frustrating times of my life has been the winter months. It’s cold. It’s hard to get warm. It takes forever to get warm, but not much, or long, to get cold again. I have to admit, it’s annoying.
For me, Charcot-Marie-Tooth (CMT) causes my lower legs and feet and my lower arms and hands to have neuropathy. I noticed many years ago that I had to be careful handling hot cups of coffee and hot plates of food because I didn’t always know at first that they were hot. As for cold, I have noticed that my feet and hands get cold really quick but I do not always know how cold they really are. Maybe others do too. But, with the neuropathy, it causes you to get hot or cold faster.
One of my issues with the cold weather is I have tasks outside which I have to do but they can be dangerous for me. Until a few years ago, I always shoveled my driveway and sidewalks of snow and brushed off our cars. Even when we would have a huge snow of 5 inches or more. To me, it is my responsibility to take care of my property.
Unfortunately, as I grew older, these tasks and the cold weather became more of a challenge and more dangerous. When I lived in a Northern Virginia neighborhood years ago, I was blessed with a neighbor who would frequently “sneak” and shovel our front walk. She and her husband would get outside early and begin the task to my surprise. I returned the favor a few times too. This was a huge blessing for me. Every once in a great while, a neighborhood teenager would stop by and ask to shovel my walk. I paid them well so they would return if it snowed again but to no avail.
I have to admit, being a man there are traits built within me that drives me to take care of my home and family. I have a hard time allowing others to do tasks that I should do. However, when it’s a matter of “safety,” for me and/or others, involved, it becomes a matter of being safe rather than my male ego. That is easier said than done.
A few winters ago now, my wife and I had moved to the house where we will live in retirement. A huge snowstorm of around 3 feet was predicted and it happened. We would have been stuck except that I learned from neighbors about some teenagers wanting to make some extra cash. I hired them and gave them a decent tip. I wanted them to “think of me” the next time it snowed. I didn’t need to be their first stop or a top priority, I just needed the walk and driveway shoveled.
The next few snowstorms, the boys did think about me and made contact. They came by and shoveled the walk and driveway. This went on for a few more snowstorms until they had the nerve to graduate high school and go off to college. Soon after that, I was blessed with friends who came by and surprised me by shoveling me out.
These two incidents allowed me to step back from something I should not do, safe my male ego and heart without anyone else knowing. I have to admit, it felt good about giving the teenagers cash for their Saturday night dates too. I would have loved someone to have done that for me when I was their age. It’s an ego thing.
I love the new year. To me, it gives a chance to evaluate what went right and what went wrong in the last year health-wise, that is. When I do this, it gives me the opportunity to realize where I can improve myself this next year.
For someone with Charcot-Marie-Tooth, setting health goals might seem a little silly or maybe even stupid. No, not at all. I can have goals to try to reach, but, I need to be wise with what goals I set. For example, in 2017, I walked 312 miles. Of course, this was with the encouragement of my dog! I set a goal to walk further than that. I think I set it to be around 350 miles. Surprisingly, I made it!
The setting of a health goal, made me get off my behind and go for a walk! Instead of being totally lazy, I walked. As I mentioned, it helped quite a bit that my dog wanted to go out for a walk too. He always reminded me to go for a walk and not to forget!
Another goal I realized in 2018 was to take advantage of the Deep Water Aerobics classes on a regular basis. The classes are offered 5-days a week. Since I tend to “burn out” on repetitive activities like taking the class every single day but Sunday, I planned to take the class every Tuesday and Thursday when I am in town. Maybe on Mondays when I might miss one of those days. I succeeded in attending my classes and will plan it again in 2019.
Health goals, as I call them, for someone having Charcot-Marie-Tooth needs to be reasonable. For me to decide in 2019 to walk 500 miles is unreasonable. It is 150 miles over what I did in 2018. I might aim for 375. An easy way for me to think about it is a mile day and a little more here and there. However, if I aim too high and get too ambitious, I could hurt myself and get discouraged with not making my goal. Too low and I might feel like I didn’t accomplish anything.
An important aspect to keep in mind, is if you miss a day or two, don’t stress about it, just pick right up and get going again. For me, it took many years to reach the about to walk very far- it did not happen overnight.
Using an app on your Smartphone to track miles walked and any other exercise is really a great way to track your success.
As always, talk to your doctor about health goals and any, and all, exercise routines. Each Charcot-Marie-Tooth patient can have different symptom and situations. Your doctor will know what’s best for you.
