Up until a few weeks ago, I hadn’t heard of National Disability Pride Month. It caught my attention as I was reading something else so I read further about it.
What is National Disability Pride Month? It is a month designated to celebrate the uniqueness of people with disabilities and their contributions to society. The disabled community makes up about 15% of the population. This makes sense since many disabled people are overlooked or ignored because of something they cannot do. I have had that happen more than a few times in my life- sad to say. Also, It was created to bring awareness to the needs of making our community more accessible for the disabled.
Anyway, I am not one for letting Charcot-Marie-Tooth (CMT) be what people think about when they meet and get to know me. It doesn’t define me. God defines me and directs my life. As a matter of fact, I rarely mention my diagnosis to anyone except on a need-to-know basis. If they ask questions, depending on who it is and why they are asking, I may or may not answer their questions.
As a disabled man, “disabled” being a term I rarely ever use to describe myself, I have contributed to my community or society by working a full-time job, paying taxes, volunteering with a few charities, attending and supporting my church, helping my neighbor when needed, and taking care of myself without depending on the community, or government, to do so. When I was job searching, I paid attention to the physical requirements making sure that I could meet them. I wasn’t going to end up having government funds paying my way. I know the pros and cons being crippled and it’s limitations so I can serve others as best as I can without causing problems.
As I go through life, as difficult as it might be, I celebrate everything God made me to be. Yes, sometimes having CMT is hard to celebrate but I believe God made me this way for a reason. It might be when I get to heaven that I learn why but it is what I believe.
For me, I don’t believe in the idea of taking pride in myself. As a Christian, I know God considers “pride” a sin, a wrong thing to do. I’m not one to ever deliberately do something which God abhors. Therefore, I am not into the pride part of this month. For me, celebrating the uniqueness that God made me is the best way to go.
What makes you unique and special, different from others, because you have CMT and/or other health issues? Please share in the comments.
Do you know God? I mean more than simply crying out “GOD!” or “GOD HELP ME!”? Have you had the opportunity to meet Him in a real way? Are you a born-again Christian?
These days, the dark forces of this world make God out to be unnecessary or outdated or there is no need to worry about God. As a matter of fact, the things of this world which aren’t that important seem to glimmer and glitzy appearing to be the greatest to obtain or have, grabbing our attention.
I have been blessed to have grown up in a Christian home. My father was a Minister of Music for many years and my mother served as a church organist and in various volunteer roles in the church for many years. We were at church every time the doors were open. Yeah, as a kid, I did find that annoying. And, I often wondered why the other kids, later teenagers, weren’t required to be in church every Sunday too. Although, I remember never really asking that question to my parents.
I became a Christian at a very young age. I remember knowing that I wanted to know the God that the preacher that Sunday was talking about. So I prayed the prayer and become a Christian that day. It’s funny, at nearly 60 years old, I can’t remember what I did a few minutes ago or why I came downstairs to my studio for something. However, I still remember that day of becoming a Christian. In my early years in college, I heard remarks about young children becoming a Christian as such a young age probably wasn’t authentic or real as they were not likely to understand what they were doing. Also, a professor said, “You can’t get to heaven on your parent’s coattails, you have to make the decision yourself.” So, just to be sure, as I like to say, I rededicated my life to Christ- making sure I was a Christian.
As life has gone forth, in all its events, challenges, and tragedies, I learned that being in church all that time as a kid and into my youth, and continuing it in my adult life, is a very good thing. As Charcot-Marie-Tooth (CMT) gave me challenges that I didn’t understand, nor did the doctors, I look back now and realize it was God taking care of me. No doubt in my mind it was His Hand helping me.
Though recently I have been diagnosed with a severe case of CMT, and am not sure what the future holds, I have a peace that passes understanding because I know Jesus.
I am thrilled to share with you that I hiked Clingman’s Dome at the Great Smoky Mountains National Park on Tuesday, May 31, 2022, and made it to the top of the tower. Are you surprised? I am, but then again, I’m not.
Clingmans Dome is located in the Great Smoky Mountains National Park on the North Carolina/Tennessee border. You hike a steep paved incline trail up the hillside to a concrete trail that leads to the dome area. Once there, you have a view of seven states. On a clear day, you can see 100 miles or so. For someone with Charcot-Marie-Tooth (CMT), this can be a serious challenge to hike. Visit Clingmans Dome to learn more. As they state, “It is not wheelchair accessible.”
In late May, my wife and I took off for our annual Memorial Day weekend vacation. We enjoy attending the Bill Gaither Homecoming Family Fest in the Smokies at the Gatlinburg Convention Center for a few days of Southern Gospel music. After the concerts, we stay a few days longer so I can enjoy the beauty of the Great Smoky Mountains.
This year, since it seems that Charcot-Marie-Tooth (CMT) may be getting worse for me, I decided I wanted to attempt hiking up Clingman’s Dome in the Great Smoky Mountains National Park. Many years ago when I tried it, I hiked up only a few feet, thereabouts, and determined it was too much. However, since that day, so much has changed healthwise, for the better, I thought I would give it one more try.
A little backstory: Before I attempt hikes anywhere or do any physical workouts which are out of the ordinary, or that could stress my body physically, I prepare for it. Since I walk my dog, Abby, every day in our neighborhood, up and down gravel roads with challenging hills, it has helped me to be prepared for hikes like this one. Fortunately, I have been walking my dogs for many years which has really aided in my ability to do other activities. Also, it doesn’t hurt that I used to take nature hikes through local parks either. I frequent a chiropractor and massage therapist who provides tips on staying healthy and exercising. Though Clingmans Dome was definitely a challenge for me to hike, the preparation helped considerably.
We arrived at Clingmans Dome to find the parking places were full so I began thinking that I’d given it a shot- maybe we’ll just go elsewhere. However, God provided us with a parking spot at a perfect location. Not too far from the trail, restrooms, and gift shop. We were headed to the trail. Needless to say, I was excited to attempt the hike.
While I wish that I was able to select a hike and go for it, with CMT, I am limited and must take that into consideration. For one, I can walk around a half-mile without my braces wearing Crocs or walking shoes. Much further, I should wear my Arizona Braces with hiking boots. However, the Arizona Braces are designed to prevent me from turning my ankles, therefore, they are fairly stiff with little wiggle room. If I wear them walking down a slope or hill, they push a bit forward. If I am not paying attention, it is very easy for me to lose my balance gaining speed as I walk downhill. My wife saved me from what could have been a disastrous fall while walking down a hill in Baltimore not realizing ahead of time what could happen. I decided to wear my Hoka One One (no affiliation) walking shoes for this hike. They would offer comfort and stability.
I started my hike using a pair of ski poles my chiropractor suggested I use. I quickly learned they were excellent for helping me with stability. I wish that I could say that I made the hike since it is only a half-mile without stopping or sitting down on any benches. However, I found the benches the National Park Service placed along the trail to be quite a blessing and most definitely took advantage of them. I hiked until I needed to sit down, then started again. I tried not to use every single bench just so I could at least say I didn’t use every single bench. The view was incredible and made the hike so worth the effort. And, the amazing part is I completed the hike with no pain in my feet at all.
Along the way, I had the blessing of meeting several nice people while enjoying beautiful views of nature. I met a nice family from Pennsylvania who spent time at Cades Cove where they saw sixteen bears. I have to admit, I was slightly jealous because I’ve only seen one or two, maybe three, when I’ve been there. Their young boy was so happy to share his photos of the bears he saw with me it made my day. Also, when I reached the top of the tower, the father shared some very kind words of encouragement. He is a Christian and shared his faith. That warmed my heart. Also, he said he knows most people in my situation wouldn’t have even attempted this hike. He was happy to see me do it. His comments helped make my struggles up the hill more of a blessing.
Why am I not surprised that I was successful in the hike? I believe in a powerful God who made promises to me when I was in my twenties that He would be my strength and ability throughout my living with Charcot-Marie-Tooth. He has fulfilled that promise for 30+ years, He’s not stopping anytime soon. I will say, if the hike was something that I should not be attempting, God would have made me realize that too.
Charcot-Marie-Tooth affects all of us differently. Though I have been recently diagnosed with one of the more severe cases that my doctor has seen, I know my own abilities and have talked with a medical professional about exercising and workouts. Be sure to talk to your doctor before attempting any hikes or new exercise routines.
A huge “THANK YOU!” to all the people who made this day possible. Without the forefathers who sought to make this country great and all those who have followed after to continue our freedoms… THANK YOU!
For me, going to fireworks and large gatherings has become something that I cannot physically do anymore. As you know, walking is challenging enough and my Charcot-Marie-Tooth (CMT) has a nerve component which makes some things more challenging as it progresses.
Loud noises, chaos, crowds, and the like associated with July 4th events cause me quite the discomfort and challenges enjoying the event. Since I haven’t been one who enjoys these events very much to start with, I don’t feel it is much loss.
However, it is something that you enjoy but the large events are a challenge for you, try to find a smaller event like in a small town or park. Maybe a neighborhood has a celebration you can enjoy. Or, do you have a friend with a deck or yard where you can sit and enjoy watching fireworks? When I was younger, my girlfriend who is now my wife, had an apartment where we could sit in her living room watching the fireworks show in Washington D.C.. Though we couldn’t see everything, like some of the ground displays, we saw quite a bit which made it fun. And, no crowds.
Happy Father’s Day to all the father’s in this awesome universe. Whether you are the father of your own children, a step-father, or a man who steps into that role for a child or two. Since I am a dog and cat lover at heart, always like to wish the animal father’s a “Happy Father’s Day” too.
My father passed away seven years ago now. I miss him and think of him often so I find myself glad that I spent time enjoying his company throughout our lives together. As society seems to make fathers to be less important than they really are, I like to think of the many teachings and gifts my father gave me as a child.
A teaching I will always cherish and be forever grateful for is my father taught me about God, Christianity, and the Bible. He made sure we knew about God, and took us to church every Sunday, Wednesday night, and revival services. He made sure my brother and I knew about heaven and the choice we had to make before we died. And, that we don’t know when death will come so we shouldn’t put it off. The choice? Where we want to spend eternity. It’s our choice. God will not force His Will on us so we decide. What would it be, heaven or hell? As a Christian, I am thankful for God’s Love for me and grateful my father showed me the way.
An indirect gift from my father was his love for music. He liked to joke that I was born during the playing of Tchaikovsky’s 1812 Overture but I never figured out how he had music playing while I was being born. Anyway, he played a lot of classical music, church music, and Southern Gospel, especially Bill Gaither, around the house. Over the years, I have gotten to where I love my classical music playing whenever I am working or reading. I enjoy church music and Southern Gospel music and usually play it when doing my gardening, household chores, or cleaning my studio. Also, for me, music is a good retreat from the chaos of life. I have found that when I stress if I turn on some classical music, my body will often relax.
There are many memories of my father that I could write about for many pages of text. I hope you have an awesome day with your father. If you aren’t able to get together with your father, be sure to give him a call to him know you love him. If you aren’t speaking to your father for whatever reason, whoever’s fault it is, get over it and give him a call. Life is too short not to share the love with your father. For those, like me, whose father has gone to heaven with Jesus, reflect on the good memories of your father as the day goes on. Maybe you know someone whose children live across the country and cannot get together with them. Why not take them to lunch?
My mother passed away a little over eleven years ago. I still miss her quite a bit, especially when I start planting perennials and annual flowers around this time of year. She had the “green thumb” in our family and taught me quite a bit about gardening. Of course, every Mother’s Day, I think about her and miss her.
I inherited Charcot-Marie-Tooth (CMT) from my mother’s side of the family. My uncle, aunt, grandmother, and great-grandmother had it too. Mom was always concerned that I would let CMT discourage me and not accomplish much in life if I allowed the symptoms to become my focus. So she always, and I mean always, encouraged me to keep going and never give up.
I miss her encouragement. She would be proud to see that I took her advice and that I never gave up. A mother’s love for a child with CMT is one of the most important aspects of the child’s life.
With my mother being deceased, I won’t be celebrating the day, but I would like to wish all mothers a very blessed day. If your mother is still living, be sure to take the time to celebrate the day with her.
Happy Spring! It is finally here. Although I have to admit, that was the fastest winter season I have ever been through in my life. Maybe it’s because it didn’t really stay cold the entire season like it so often does. Also, being retired, I don’t have to go out in it to fight snow/ice to or from the office. Or, it could be as you get older, time goes by faster… I will leave that one alone.
The winter season was different for me this year too. Since we moved south, I was curious how much our weather might be different though the move was only an hour away. We have more snow and colder temperatures by up to 5 degrees. Well, we are near the mountains which affect the weather. Also, not being in town with concrete and asphalt will affect temperatures too. Last summer, we were warmer than the northern area but not as nearly as hot.
Either way, it’s Spring. The warm weather is on its way. I will be outside enjoying as much of it as I can. I hope you do too.
My favorite time of year is coming soon. Tomorrow begins Daylight Saving Time at 3 a.m. Of course, I think I will sleep right through it until time to get up for church at 6 a.m.
This is my favorite time of year because it means if we have snow or other wintry weather, it will melt sooner than in the winter months, warmer days are coming, and I happen to enjoy the extra hours of sunlight at the end of the day. Before I retired, I especially enjoyed it because I could come home from work and enjoy the outdoors a few hours before dark. Also, it meant days off in warm weather were coming soon!
Tonight before bed, turn the clocks one hour forward. “Spring Forward!”
It’s not that I am a Scrooge or an antisocial curmudgeon that wants everybody never to party again. Or that there should never be office parties. Well, maybe as an introvert, I am a bit anti-social but I think that comes along with my personality.
When I was working in an office setting, I kept my health issues to myself. The reasons for that will be shared in another post. However, doing so caused me to be wary about many known factors I have with Charcot-Marie-Tooth (CMT) which can be so embarrassing that I prefer to avoid any situations or events which could cause them to be displayed.
What factors? These:
The first one is my inability to ALWAYS control what my feet will do. As you might know too, I can be walking when all of a sudden I trip over nothing. Yes, nothing. There is nothing on the ground. As far as I can tell the ground is level. However, I have tripped on nothing repeatedly. It’s usually pretty funny to the observer when I am doing my best effort to recover without falling down on the ground. I can just see myself with a full plate of food, or two, finding a place without looking for it to trip and throw my food across the room. It would only be funny if the food fell on my least favorite co-worker or maybe the annoying boss, but I didn’t say that.
The second one is my inability to ALWAYS control my hands. While most of the time, I don’t have much trouble with them, there are moments when I drop things. These moments seem to be increasing as time goes forward. I don’t like being embarrassed by doing some perceived as stupid, no one does. So trying to balance a plate of food while selecting what I want to eat, trying not to drop the utensil used to get the food to my plate, and walking forward without stumbling is not on my list for a fun activity.
The third one is the inability to balance my plate of food, put food on it, and talk to someone else while doing it all. Crazy sounding isn’t it? I have never understood those people at potluck luncheons or social events who can talk to everyone about everything while simultaneously placing food on a plate without dropping one little bit. I would have food everywhere with maybe a little on my plate.
My guess is the deterioration of the nervous system from CMT is the culprit behind my dislike of these social events. It is something I can’t help nor is there much I can do about it. At work, I would do whatever I could to avoid the event including taking the day off or offering to run the office while the rest enjoyed their time. That was always my favorite thing to do. However, I have yet to find a “fix” to this problem. Avoiding them isn’t always the best answer because I think it offends people but that’s really the best I can do.
I will consider attending a social event with pot luck luncheon, or whatever they are called these days, with my wife. She is good about helping me with carrying my plate and drink. She seems to have learned to manage the fine line of helping but not embarrassing me. Though, to be honest, I’m grateful for her help. She isn’t doing anything as embarrassing as I would be by tripping and throwing food all over the place. My luck, it’d be on someone I didn’t like to start with.
This post is intended to be the first of many about my use of braces and hiking boots to enable me to continue walking. It’s been a great journey, but, with some challenges. I hope that you will learn something helpful by my sharing these experiences. As always, speak with your doctor for specific medical advice.
The year was late 1999. The pain and issues with Charcot-Marie-Tooth (CMT) were really starting to be, well, very painful and challenging. Thankfully, I have a fairly positive attitude which was really helping me at this point. However, with the new challenges to walking, I needed some kind of assistance.
My wife and I had decided on a family doctor which I later learned was good about thinking “outside the box” for my care. She knew a doctor who made braces for people in many situations so I was referred to see her.
My appointment went well. It was the usual battery of tests to see how I walk, what seems to be wrong with my feet, and how she can help. Obviously, it’s CMT. However, as you may know, it affects everyone differently, even within the same family. For me, I had the blessing of having the most severe case. So, I didn’t have any family members to ask questions and went on my own way to learn how to help myself.
The Orthopedic doctor took a cast of my feet and calves from just below the knees down. I sat a few minutes, or less, while the casting material set. Once dry, she marked out the pressure points of my feet onto the cast. WOW! Well, with deformed feet, there are plenty of places to mark. Once she finished, a small saw machine was used to cut the mold. That was a weird experience as it grabbed more than a few leg hairs, that I have just spent all of my life growing, as it went up and down my leg. It wasn’t painful, just tingly weird. It did set my nerves off because of the constant vibration but once it settled, I was good.
I waited about two weeks for the braces to arrive and they finally did. I went to the orthopedics office to get them and I’ll admit that I was a bit discouraged about having to get these braces. Yes, I knew they would help me to walk and hopefully reduce the energy it takes for me to do it. However, it’s not how anyone would want to spend life.
The braces fit great. All I had to do was put them on and put the leather straps across my leg through a metal loop on the other side and tighten. Easy enough, yes. But, hardly the last step in this journey. Learning to walk again. Learning to drive again. Learning to just plain ol’ live again would be the new life for me… after I bought more than a few walking shoes a size larger than I normally would wear.
