Charcot-Marie-Tooth: The Blessings of 2024

Every year-end, newspapers, tabloids, and the like publish their top stories of the year. There are usually some natural disasters, politics, crime stories, and other news that are not necessarily the best or good news. Sometimes, when looking back, it seems to almost make the year look worse than it really was. This year, I thought I would do something different by looking at my top events in life and listing the blessings that happened instead of the negative.  I wish I had thought about this idea a month or so ago so it’d be published in January. I didn’t, but I don’t want to wait until next year.

The hugest blessing for me in 2024 was having God with me every second of the year. He guided my steps, took care of my needs, and blessed me in too many ways for me to list without leaving something off. He comforted me during my challenges with Charcot-Marie-Tooth (CMT), my heart challenges, and my frustrations with my health. His comfort got me through them.

A huge blessing for me was my wife with me when I was going to have surgery in late 2023, followed by cardiac tests/procedures to understand what is causing and how Atrilfibulation affects me. Having her with me was so incredible that it’s hard to put into words.

I remember waking up from a cardiac procedure and asking, “Where’s my wife? I want my wife. Where is she? I want my wife.” The comfort of her coming into the little waiting room was beyond description. According to the nurse, I wouldn’t let them do anything until they found my wife. I’m not so sure if that’s entirely true, except that I knew I wanted her faster than they were doing it. I am not referring or implying anything negative about the hospital staff, they were excellent.

Believe it or not, another huge blessing this year was recovering from my first surgical procedure. The blessing was that I recovered in my quiet country home, with the natural world near the Blue Ridge Mountains surrounding me instead of suburbia in Northern Virginia.

I could nap whenever I needed to do so or go for a short walk. Also, I got to enjoy watching the deer and foxes cross through the backyard. This was huge for me because I hadn’t had this before, and it honestly helped my recovery improve. I doubt my healing would have been as fast if I still lived in the hustle and bustle of suburbia. 

A blessing for me was my friendship with my “grandson.” First, I have no children or have been hiding a kid somewhere. However, a 22-year-old young man and I became friends after finding we had a lot in common. He nicknamed me “Grandpa” because of our age difference, and his grandfathers had passed away. As it turns out, he has some cardiac challenges of his own, so he was able to encourage me during my challenges. It was priceless because I’d never had cardiac challenges so it brought a lot of concerns. 

It has been a fun and interesting friendship as I see him growing into an extraordinary man. After not seeing him for three months, I recently got together with him and was amazed at God’s incredible work in his life.

An incredible blessing of a great boss turned great friend now. When I began working right after college, I was blessed with a part-time job in Christian radio. I was thrilled to get the job because I studied mass communications and worked part-time in radio for my college studies. Also, the station was part of the Washington D.C. radio market, so there might eventually be more opportunities.

Though my college professor had told my boss about my disability or the challenges I had, it was never held against me. She became interested in my health and expected me to do the same work as anyone else on staff. I liked that because it was how I wanted to live—and I still do.

After the radio station had changed owners and we all went our separate ways, we caught up again on social media. She is a reader of this blog and a great encourager. I have found this to be such a blessing.

I joined a CMT support group, although this introverted nerd initially didn’t see the need to do so. Since the group met via Zoom only occasionally, I figured I had nothing to lose but an hour or so of my time here and there.

As time passed, I learned that it is comforting to know you are not the oddball out; there are others with CMT. However, I would not wish the disease on anyone and am not happy that others have it. It does help my well-being to be part of this group.

My wife and I took a cruise with the Bill Gaither Homecoming Friends. I wanted to celebrate my 60th birthday and I am still walking by taking the cruise. Due to their age, it would be the last, or close to last, cruise Bill and Gloria Gaither would be hosting to Alaska. Since we had taken one several years ago and immensely enjoyed ourselves, we had to go.

Not only did we have fun together seeing Alaska, but we had nightly concerts of Southern Gospel music and some music events during the day.

When I was younger, my doctor told me I would be wheelchair-bound by age 40. I have been celebrating, since age 55, every five years that I am still walking. 

In October, I caught up with a friend I thought would never happen. But it did.  One of the hardest things about graduating from college was leaving two friends behind. Ed, Tony, and I had become best friends. It was something I would have liked to have never ended. Come to find out, it didn’t. 

I caught up with Ed a few years ago. His lovely wife, who was a great friend in college, too, had passed away. He caught up with me to share the news. My wife and I went to the Celebration of Life service to honor and remember her. After the ceremony, I told Ed that if he wanted to get away for a while to rest from all the stress, he would be welcome to visit us. We wouldn’t have to do anything or could do everything. It would be up to him. Fortunately, he took me up on my offer and came to visit within a few months. After that, we keep up by texting and visiting once a year. 

In December 2023, I came home from a dinner date with my lovely wife to find a Facebook notification email from Tony’s wife. At first, I thought, “Oh no, has something happened,” since I hadn’t heard from Tony in thirty-two years. He wasn’t much about keeping in touch, but I knew his wife through social media. She told me Tony was trying to catch up with me. He would be in Washington, D.C., for work and hoped to catch up with me. Needless to say, I was very surprised. We met for lunch and spent a few hours talking.

Fortunately, it didn’t end there. My wife and I were able to fly to Boise, Idaho, to visit Tony and meet his family. Ed drove up from Arkansas. It was an awesome week. We laughed, joked, played games, and put together puzzles. It was the most fun I had had with a group of people in a very long time. Memories of the trip still make me laugh with just a thought. 

Thanksgiving and Christmas were celebrated with a friend. After our families passed away, my father-in-law being the last a few years ago, my wife and I started to create our own traditions. This year, for the third time, we were joined for dinner on Thanksgiving and Christmas with a family friend who definitely made the season bright. 

Blessings are whatever you think they are, usually a positive moment or event in your life. I am not sharing these blessings to brag or make my life seem great. I learned to focus on the positive aspects of my life so that the negative aspects of CMT aren’t so concerning. After all, some of the pain of the disease and the constant new challenges can be a bit overwhelming. Focusing on and remembering life’s positive moments will make life happier.

Charcot-Marie-Tooth: New Year’s Revelations

Are you familiar with the age-old idea of making New Year’s Resolutions, where you list ways to improve yourself and use New Year’s Day as a starting point? I’m at it again this year.

For many years in my younger days, I made New Year’s Resolutions and did my best to keep them. This usually lasted until around the 20th or so of January. Amidst all that, I was constantly restarting the New Year, meaning restarting the resolutions on the 23rd meant that it was the New Year for the resolutions. It got old along about February 3rd. I did my best to keep whatever resolutions were left to keep. Along about June – July, I would take a trip to the beach where I would walk and evaluate my progress.

New Year’s Resolutions are good as long as you don’t try to conquer too many things all at once. In other words, I always managed to fail when I tried to reinvent myself by using a starting point of January 1. Eventually, I changed the New Year’s Resolutions to New Year’s Revelations because it would be a revelation if I really managed to make the changes.

This year, though I know it is hard to improve on perfection, I have decided to make some revelations for 2025. So here we go:

First and foremost of importance, I want to read my devotions and Bible more regularly. As I have had to change my morning routines more than a few times, and have had some battles with fatigue and exhaustion this past year, I found myself not reading my devotions and Bible as often as I should. Unfortunately, the old brain is forgetful, and it happened. Recently, I reminded myself that my tablet has access to devotions and my Bible. I have it with me everywhere around the house. So, there I go. 

Second, read as many books as possible in the year, aiming for at least twelve. A few years ago, my chiropractor told me that Charcot-Marie-Tooth (CMT) can affect the brain. I haven’t taken the time to read up on this yet, but it concerned me as he seems to know quite a bit about the disease. He suggested reading more often. 

My goal for 2025 is to read a book a month. This year, I plan to list what I read, as it could be that I am already reading more books than I realize. I tend to finish one and go on to another. 

Ideally, I would like to read through my Bible Prophecy library books by July. That, however, would be impossible for even the fastest and most intelligent readers unless they had all day and night to do nothing but read. That being said, I plan to read as many of these books as possible this year. 

Third, listen to more music and watch less TV. In early 2024, I got back into my favorite classical music hobby. I had a medical procedure in late 2023 that caused me to have to rest for three weeks. When I came home from the procedure, I went to bed to rest. I had my tablet when I started thinking about what I enjoyed and could enjoy while recuperating. Though I hadn’t waited until the last minute to prepare for this, I did a web search on classical music. I had forgotten how valuable the internet could be for someone interested in music. So, the exploring began.

I discovered the wonderful world of streaming concerts from around the globe via Medici.TV, Symphony.Live, and Stage+. As a result, I found myself enjoying my CD collection and cataloging purchases as much as I did years ago.

 Over the past few months, I have left the TV off and played classical CDs in the mornings while writing or doing my online church work. Unexpectedly, but not surprised, I found that my stress levels went down as I didn’t have the TV noise on as much. Also, there were plenty of moments when the music was so sublimely beautiful it was incredible. That alone was worth keeping the TV off.

I will continue my workouts in 2025, possibly adding a day and a routine. About a year ago, I started working out at a Wellness Center in my town. As a result, I have increased my strength, improved my confidence, am feeling much better, and even made a few friends along the way.

I will continue my workouts in 2025, possibly adding a day and a routine. About a year ago, I started working out at a Wellness Center in my town. As a result, I have increased my strength, improved my confidence, am feeling much better, and even made a few friends along the way. 

However, I am not much on working out. I go twice a week because I know that I will feel better if I do so. If I do not work out, the pains of CMT will become annoying again, and I don’t want that. It would be good for me to workout three days a week. In these winter days, I would have time to do it. When the weather changes to spring and the outdoor chores return, it will not be possible. So, am giving thought to adding the third day. 

Also, my exercise specialist gave me a list of exercises I can do at home to firm up the old man’s gut. I am going to start doing them. 

And finally, there have been too many times in 2024 when I neglected to walk my dog. It is a great exercise for both of us. She and I love getting outside and exploring. My goal is to make walking her a priority. 

By the end of 2025, I should be even more perfect than I already am. I think these efforts will be worth it!

Happy New Year!

Charcot-Marie-Tooth: National Disability Pride Month – July 2022

“Enjoying the Outdoors with Friends!
Photo by ELEVATE

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.

Charcot-Marie-Tooth? Did God See My Disappointment?

“Contemplating the Diagnosis”
Photo by Martin Péchy from Pexels

I had put off being diagnosed with Charcot-Marie-Tooth (CMT) as long as I could. However, the pain in my feet and lower legs had gotten so bad by age 22, that I needed to find out if it was CMT, or something else.

The doctor gave his diagnosis and I was right as expected. It’s CMT. He gave a prognosis of not being able to walk after age 40, would be using a wheelchair, that I should never run, should not do this, should not do that, and the list went on and on. Of course, being a young man and in college, sex was always on my mind but the doctor didn’t say much about the subject.

I left the doctor’s office pretty upset and disappointed. It seemed that my life was crushed or over. Everything was falling apart. I wanted to finish college, find a good job, find a wonderful woman to marry, and live happily ever after in our 4-bedroom home with 2.5 children and a dog. That seemed to be disappearing.

Most of the guys I knew or had seen in classes at college were in great physical shape. They were athletic, happy, and able to do just about what they wanted to do. I wanted that. However, it wasn’t going to happen.

When I look back, I believe that God had heard my silent cries of disappointment, and, hey, maybe even angry tears. I didn’t blame Him as it just never really occurred to me to do so and probably because to me, that was disrespectful. I don’t remember praying about it either. I wouldn’t see the extent of what God heard, saw, or felt until I went back to college in the fall.

After the diagnosis, I went back to what I was doing in life. Playing, working, running, and doing whatever. I went back to college in the fall as I wasn’t going to give in to this disease!

Hello!

Boy Writing Notes

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.