Childhood – Isaiah Jacobs

Happy Father’s Day!

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?

Happy Father’s Day. May you have a blessed day!

Finding A Hobby, Part 2

“NS 8081 leads through the Shenandoah Valley”
Photo by Brian Breeden on Unsplash

As I mentioned in my previous post, Finding a Hobby, Part 1, I think people who have a disability, especially Charcot-Marie-Tooth (CMT), should find a hobby to occupy their time helping to keep their minds from focusing on their health problems. Hobbies distract from thinking about the aches, pains, and what you cannot do. I started using hobbies to deter my attention several years ago and will probably continue forever. It has allowed me to explore the world!

When I retired, I moved to an area near where I grew up. On moving day, I was pleasantly surprised to hear train horns in the distance. I had forgotten about the trains. How could I? There weren’t trains near my previous home, I was busy with life including my marriage, a career, and trying to stay ahead of CMT.

After settling into my home, and hearing more train horns, I became interested in seeing trains roar by so I started exploring the area. I quickly found places where I could safely, and legally, watch trains go by and photograph too.

I became interested in trains as a young boy by spending time every summer at my grandmother’s house in West Virginia and living near the Southern Railway. She lived across the street from the mainline of the Chesapeake and Ohio Railway. To me, besides hanging out with my grandmother, the trains were the greatest highlight of my summer. It didn’t hurt that I lived not far from the railroad tracks of the Southern Railway where I often heard train horns, including whistles from steam engines.

So I dove deep into the Railfanning hobby doing as much as I could possibly do. I met some great people who enjoyed the hobby immensely. I learned how to chase trains, where great train watching locations are throughout Virginia, West Virginia, Maryland, and Pennsylvania. I found some great websites, a few historical societies, and several magazines which provided me with a wealth of railfanning information about trains and railroads. I was hooked. I learned how to use technology to determine when a train could be coming by and how to get to the tracks in time to see it.

Since I cannot always drop what I am doing to go watch trains, I found two great streaming websites where I can watch trains from around the country. One offers streaming from other countries. I subscribed to Railstream and began streaming trains on my devices any time I want. The other site, which I haven’t subscribed to yet is Virtual Railfan. Virtual Railfan offers free views of some cameras on their YouTube channel too.

I enjoy this hobby immensely. However, it wasn’t too long before I was overwhelmed. This happens with CMT people. A hobby shouldn’t overwhelm. So much to learn, so much information coming at me, and so much stuff fellow railfanning guys said that I had to know, it took the fun out of the hobby. So I took a step back. I don’t want to be “overwhelmed” with a hobby as it’s supposed to prevent me from being “overwhelmed” with my disability.

After much thought about how I can enjoy the hobby without it being overwhelming, I took a step back and tried to determine what I like best about railfanning and trains. For me, I don’t think I need to know every single detail in the entire universe of every single train which goes through every single community and train-watching location that I could watch throughout the entire universe. Nope. I just want to enjoy watching the trains go by, creating videos, and photographing. I have found Classic Trains and Trains Magazine to be my favorite publications. These magazines have websites where subscribers can learn more about trains. Also, the publications of the Chesapeake and Ohio Historical Society and the Railway and Locomotive Historical Society are my favorite as they are well-written publications aiding the person new to the hobby to understand much more.

My point is to find a hobby that you enjoy. Decide what you enjoy about it and get into it. If you should get discouraged about your symptoms of CMT, get into your hobby to make time to relax. However, do not use it as an escape to a point of neglecting your health and not seeing your doctor or following their advice.

Happy Valentine’s Day!

When I was younger, Valentine’s Day sometimes was a lonely day. Sometimes, I would be dating a girl and we’d go out or do something. But, many times not.

I wish that I had realized back then what I know now or learned along the way. Valentine’s Day isn’t just about being loved or loving your girl or boyfriend. It’s a day to celebrate love.

The greatest truth I learned along the way is that God loves me no matter what. He is always there for me and will ALWAYS love me… even when I mess up really bad.

Thankfully, I will spend today with my wife and two boys. We believe in saying “I love you!” quite often and doing special things for each other all the time. Today will be pretty much a normal day but we will stress our love with a nice dinner somewhere.

I will thank God for the love of my family and friends today too.

I hope and pray that you have an awesomely blessed day!

Getting My Feelings Hurt!

“Contemplation”
Photo by Brooke Winters on Unsplash

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 Diagnosis and Then What?

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!

“Doctor Waiting!”
Photo by Martin Brosy on Unsplash

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.

Early Years With Charcot-Marie-Tooth

Boy Exploring a Tree, Photo by Ksenia Makagonova on Unsplash

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.