Charcot-Marie-Tooth: Happy Independence Day!

(C) 2025, Isaiah Jacobs

I almost let Independence Day pass without writing, as my schedule has been crazy busy this season. Between nearly 23″ of rain that has caused delays in finishing up my yard work, as I usually have everything planted and mulched by June 20, a new workout routine at the gym that’s requiring a bit more time, and a few other essential events in life, I have been overwhelmed. However, today has a history of good memories that I like to reflect on.

When I was a young boy, my parents would take us to my mother’s Aunt Mary’s house for a huge July 4th family reunion picnic. I had already been visiting with my grandmother before my parents came to visit. When we would head out to the celebration, I always wondered how many trains I would miss, as she lived near the busy Chesapeake and Ohio Railway tracks. How many? I will never know.

As we headed to the party, we always had a bit of a tradition of our own. Especially when we got to Pinch Ridge, WV. My father always felt the need to pinch my mother at that location. Later in life, I would do the same to my wife when we visited. I would get into the same trouble with my wife as my father had all those years.

When I was young, I didn’t appreciate the beauty of family reunions as much as my mother did. For her, it was a time to catch up with her parents, sister, brother, a few aunts, uncles, and cousins. She looked forward to it from the moment we got home from one to the time we attended the following year.

When I look back on those events, I realize that I was more introverted then than I am now. Don’t get me wrong, I’m still an introverted nerd and proud of it. I didn’t enjoy the reunions because there wasn’t anyone my age with whom I could play. I would enjoy a few hikes in the woods, watching for snakes at every single step, or a hike up to the top of the knob. My mother’s aunt lived on the side of a mountain. You could hike to the top of it by walking up the side. It was called a knob because their driveway circled it. When we got back to grandmother’s house, I would look up and down the railroad tracks, hoping to see a train or two to make up for missing the whole day. What I didn’t know at the time was that most, if not all, trains weren’t running due to the holiday.

As I’ve grown older, I’ve realized the importance of family, even when you’re an introverted nerd and want to sit by the railroad tracks all day, waiting for the trains to roll by. Family is more important than that. I realized that fact many years ago and have enjoyed visiting those relatives still living. Thankfully, I spent time with family closest to me before they passed away, and I couldn’t get together with them.

My mother’s side of the family is where I inherited Charcot-Marie-Tooth (CMT). Though I didn’t understand, or care about all that, as life was an adventure of exploring, as it should be for a young boy. I remember the family sharing their aches and pains, dealing with the disease. At the time, it wasn’t comforting to know that I could have to deal with that. However, that’s not necessarily true. CMT has various strains that affect people in different ways. Even if my brother and I had CMT Type 2, our symptoms weren’t necessarily the same. In the back of my mind, I think hearing what others had to say about the disease was an encouragement to fight against it.

Today is the 249th birthday, Independence Day, of our country. Remember to be thankful for the country and freedoms we have. Have a blessed fourth!

Happy Fourth of July!

(C) 2023, Isaiah Jacobs

The Fourth of July, Independence Day, brings back some great memories from my childhood and young adult years. They are a reminder to love family and friends, making time to enjoy their company.

When I was a young boy, as young as I can remember, my parents would take my brother and me to the hills of West Virginia to visit my grandparents. We would arrive a few days before the Fourth of July and stay a few days after. I like that because it gave me time to watch the trains rolling through my grandmother’s hometown. That was the highlight of the trip for me.

However, on the Fourth of July, the family on my mother’s side would gather at my Aunt Mary’s house on the side of a mountain. Everything is on the side of the mountain in West Virginia. There were quite a few cousins, uncles, aunts, grandparents, and great-grandparents, and the list could go on and on, gathering together for a day of fun.

There was always plenty of food, drinks, and desserts to last the day and a few afterward. And, there were games and hiking too. A few years, we went to the local city for the evening fireworks.

Aunt Mary and Uncle John were my mother’s favorite aunt and uncle. She always enjoyed the time she had with them. She spoke of them quite often during the year before our annual gathering.

Then, there’s my mother’s sister Connie. They loved each other dearly. They would chat about everything in the entire universe as if they hadn’t spoken with each other for years when, in actuality, they had spoken by phone possibly as much as once a month. They were the type that would giggle and laugh about everything leaving my Dad and I to wonder what was so funny. Usually, there wasn’t anything funny to the rest of us.

As a young kid, I didn’t quite enjoy these reunions as much as my family did. I always wondered what trains I missed watching rolling through town. However, I remember how much the family enjoyed the time together.

In my older adult years, I have come to miss these reunions. The family has either passed away or gone their separate ways. It seems it was the older generation that kept the reunions going, and as they went on to heaven, the gatherings ended. I have a few relatives which I am still in contact with which I have the pleasure of connecting up with once in a while.

However you celebrate today, may it be a blessed one full of fun and fellowship. Remember the reason we celebrate the day too. For if it weren’t for the many people before us going ahead with their dreams of a new country, we wouldn’t have the freedoms we have.

Happy 4th of July, Independence Day!

(C) 2022, Isaiah Jacobs

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.

Be careful and safe as you celebrate today!