“Merry Christmas” (C) Isaiah Jacobs, All Rights Reserved
I pray that you will have a blessed and very Merry Christmas!
I will be spending the day sharing a few presents with my wife and taking my father-in-law to lunch somewhere. After the loss of my parents, brother, and mother-in-law, Christmas has been a challenge because it brings back so many wonderful memories. Now, the celebration feels like it’s always missing something. However, we celebrate and enjoy our time together.
And, after lunch with my father-in-law, my wife and I will head home and probably enjoy a nap!
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.
Today in the United States, we salute, honor, and remember the men and women who served our country in the U.S. Armed Forces and paid the ultimate price. To me, it is a huge sacrifice to decide to serve in the armed forces to protect the freedoms of people you do not even know. Much less, these days, many people do not even respect those who served.
I was not able to serve. Charcot-Marie-Tooth gave me physical challenges at an early age so it kept me from serving. To be honest, I’m not sure what I would have done if I could have served. Would it have been the Air Force? Navy? Army? Coast Guard? At this point in life, I really do not know.
However, growing up in an area where several neighbors, family friends, and friends from school were serving in the military, I had several friends who went served after high school or college. I remember one friend who everyone in high school liked was serving somewhere in the Middle East and lost his life because of an attack.
I married an “Air Force Brat!” as she likes to call herself. I have learned quite a bit about what happens with the families of those who serve. Sometimes, a spouse is left alone for months while one spouse is overseas. Or, a spouse has a duty to fulfill so the family cannot attend an event. Or, a spouse serving has to miss many important family events, like graduation or marriage, because they are serving away from home. The sacrifices are endless and these do not even begin to describe what the families go through.
I have to say, that would be very hard for me to do. I would miss my family incredibly! I don’t like being away from my spouse more than a few hours or maybe a day but not for more than that.
Thank you to all the families of those whose family served in the U.S. Armed Forces and paid the ultimate sacrifice with their lives. Thank you isn’t enough but I cannot think of any other words than that.
Thank you to the men and women of the US Armed Forces who are serving to protect our freedoms. Thank you for all you have done and are doing!
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.
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.
When I was a young boy, I did not know that I had the Charcot-Marie-Tooth disease. I was an adventurous and curious kind of kid who never really got into trouble unless you call accidents while exploring my universe trouble.
I loved exploring the dirt hills on my bike at the end of the street which wasn’t far where we lived. There were great trails which lead to these hills and you could do jumps! A few friends were better than me but it was still fun. I loved to make forts in the woods too. I remember one we made next to this huge tree. We had old carpets and blankets spread out to create a floor so it would be our place to hang out. We leaned several good size boards against the tree to create a roof. It was fun.
However, I knew something wasn’t right and, at times, I was embarrassed about it. When it came to those infamous P.E. classes, I wasn’t able to run and jump hurdles like the other kids. I wasn’t able to pull myself up to do pull-ups or even do sit-ups. But, fortunately, what the other kids said, didn’t bother me enough to “scare” me for life or make me want to seek vengeance I just went on with life.
As I grew older, I knew or wondered if something wasn’t right because I was uncoordinated and had no interest in any type of sports. While other boys my age were strong and athletic, I didn’t quite develop as they did. It wasn’t something I focused on though but there were plenty of times of embarrassment.
When I look back at those days, I do not have any horrible memories of any mean or rude things other kids did to me. I’m not sure why I don’t because there were plenty I could remember or that could have really hurt me. I think the fact that I knew my parents loved me, whether I knew it from them saying it frequently or if I thought about it subconsciously, I’d have to say it kept a good positive attitude in me knowing it.
In my humble opinion, whether your child has Charcot-Marie-Tooth or not, you should verbally tell them, “I love you!” every day.
Hello! I have been wanting to create a website about my life with Charcot-Marie-Tooth for years. The disease is very annoying, to say the least, but, since it is what it is and I cannot change anything, I am making the best of it.
I wish I had had the vision when I was a young boy to begin writing about my experiences. I never really thought about. And, though I knew something was wrong, I wasn’t willing to admit it, have it diagnosed, or even pay attention to the fact that it was possible to have it until I was in my 20’s. Further, I needed to accomplish another goal before I began writing or talking about my health.
To be honest, regardless of what Charcot-Marie-Tooth does to my physical being, I could never have gotten through life without God and His care for me. God spoke to me while I was in college that He would be my strength which I will share about in a post. I will share more about that experience in another post.
My plan is to write about the different things I’ve done to help myself along life’s way. I hope that my tips and stories will help you fight whatever health issues you might have and be the best you possibly can be.
Please read my “About” page on this site. You’ll learn that I am a man sharing about my journey. Please always check with your doctor for their recommendations.
