You might be thinking that I am a day behind since the first day of Spring, the Vernal Equinox was yesterday, not today. I have been traveling and am a bit behind. Also, I was thinking spring started today but everything is a bit earlier this year and I didn’t catch it.
Since this is probably my favorite season with summer following a very close second, I couldn’t pass up celebrating the day. Spring is my favorite season because it means the harsh winter storms are over, what little we had. If we get a winter storm, it will melt off fast and not be problematic to get around. This year, we had a few storms but they were mostly rain except maybe one snow but it wasn’t enough to keep me home for a day.
As the past fall and winter season came upon me, I decided that I would bide the time by taking classes. The first I took was “The Theology of Eschatology,” from September to December. My interest in Biblical End Times has been a fascination for many years. I had a few others planned, however, a few health challenges arose that kept me busily distracted for about four months. Things are great now, just in time to enjoy my favorite season.
I learned a lot during the health challenges that I plan to write about. However, coming into Spring with all it’s outdoor chores and opportunities, it might be a bit before I sit down and write. Hopefully not as I think those with the challenges of Charcot-Marie-Tooth might benefit from what I learned.
Happy Spring! Get outside this season and enjoy the beauty of God’s Creation!
Another year has passed faster than I anticipated. And it didn’t seem to be that fast when I was going through the year, but here we seventeen days into the beginning of another new year. Every once in a while, a buddy will text me, “Wow! The week has gone by so fast!” More recently, “A few more days of 2023 to go.” I know how he feels, though I think time goes faster for him since he’s older than me.
2023 was my most challenging year yet, though it had some great aspects or parts along the way. At this time of year, I like to reflect on what I accomplished or didn’t accomplish over the past year. Also, what was fun and challenging, and where was I successful? To be honest, I can be pretty hard on myself. Not because I have low self-esteem or anything like that, but because I want to always be my best. Also, there isn’t much point in reflection if you aren’t truthful with yourself.
The year started out with problems relating to my medications. In 2022, I asked my Nurse Practitioner if she knew why I was taking certain medications. She didn’t, so I discussed stepping down from one medication. She was fine with that so I followed the recommended routine to do it. While stepping down, I didn’t notice any difference with me so I continued planning to quit taking it.
The new year 2023, brought a prescriptions refill faux pas between the doctor’s office and my prescription company. One said the other had requested a refill when in actuality, neither knew what the other did. I ended up unintentionally stepping down from these medications too.
About this time, I discovered a holistic product that could help me with pain and the neurological issues associated with Charcot-Marie-Tooth (CMT). I was excited about it because I prefer taking holistic products over medications and want to try that before taking a new prescription.
Since I had stepped down from another medication years ago, I was hoping that stepping down from these three prescriptions would be as successful. However, that wasn’t the case. In March 2023, everything came crashing down on me. I was having breakfast at a local restaurant with a buddy when I started feeling the worst I had ever felt. I wasn’t in danger of anything except that I felt horrible with my neurological system acting crazy. Long story short, I returned to the three medications, which were doing a great job with my neurological system. Now, I know what the medications do!
A highlight of 2023 was in February when I began working out at a local wellness center. I met a personal trainer who is a Christian. She quickly agreed with my belief to “believe the impossible.” My belief is if God wants me stronger and healthier, He will help me accomplish it. Yes, I have to do all the work but He will help me reach goals that otherwise I could miss. I spent the year working on an exercise routine with weights, a few other exercises, and a deep water aerobics routine. By year’s end, I had raised the weights on the machines by ten pounds!
I ended 2023 with an interesting journey. I learned that I had injured myself somewhere along life’s way when I was having fun. I have no idea what I did to cause it. This was proof that is often difficult for someone with CMT to know they hurt themselves. I sought medical help with it, which led to discovering another health problem existed. While a bit challenging, God brought all of this together in a way that blessed me, as it didn’t require a hospital visit.
My goals for 2024? Exercise a bit more. I plan to increase my weight-lifting by at least 10 more pounds or more, while the deep water aerobics will probably stay about the same. Last year, I took a class on the “Theology of Escathology” through a local college and enjoyed every minute of it. I am looking to take more classes like that this year. No, I am not looking to be a theologian but to learn more about God and my faith.
I heard on the radio recently about a lady who doesn’t believe in making New Year’s Resolutions. The word “resolutions” was too harsh and she often wasn’t successful. Instead, she “amends” whatever she thinks needs to be improved. I like that idea. I am going to “amend” certain things in my life in 2024 hoping to be successful.
Do you have any goals for 2024? Please share them in the comments below.
I have been thinking about what tip I have learned over the years living with Charcot-Marie-Tooth (CMT) would be my “best tip” or “No. 1.” Or, which one would be most beneficial? I can share many tips, tricks, and hacks, but only one stands at the forefront of anything I have ever done that I would never want to be without.
What is it? Follow Jesus. I gave my life to Jesus Christ, allowing Him to take over becoming a Christian. I recommend reading the Bible, a daily devotional, attending a local Bible-believing and teaching church, and getting involved in it. Yes, simple as that. I will admit, I would absolutely NOT EVER want to fight any of the battles against Charcot-Marie-Tooth (CMT) as I have over the past forty years without Jesus. He has been a strong comfort and encouragement beyond what I could ever explain in writing.
I had the blessing of being born into a Christian family, which doesn’t automatically make me a Christian, but it provided exposure to serving God from the day I was born. At age 6, I remember thinking I wanted to be saved from my sins like the preacher talked about. I believe I became a Christian that day, though I do not remember the date or time. In my early college years, I became concerned by something a professor said about whether I was truly a Christian. I invited Jesus into my heart again- just to be certain.
It wasn’t until my college years that I learned how much Charcot-Marie-Tooth would affect me. The pain I had in those early years was beyond description, meaning I can tell you, or write about it, all I want, but unless you go through it, you don’t understand. I’m sure those with CMT will agree, or you will eventually.
The salvation from my sins so that I will go to heaven when I die wasn’t the only part of God’s Love that has helped me get through life. It’s His Compassion, Companionship, Love, and Desire for wanting me to be the best I can be.
I cannot remember how many times I have had pain in my feet, legs, hands, and arms and reached out to Jesus asking for His Help. Sometimes, I would just talk to Him because I knew I could trust Him to keep my secrets. Sometimes, when CMT was bothering me, I didn’t want to burden someone with my struggles, so I talked to God about them. Other times, I would get discouraged or in a funky mood about life with CMT, so I talked to God about it. It has been truly amazing at how He reached down to provide me comfort in many ways.
In the early years of college, God told me that He would be my strength and ability if I would just trust Him. That I have. I wish I could say that I have been perfect along the way, but whenever I strayed, God always did something to remind me He was there for me.
While in college, I was teased quite a bit by the other guys. I was surprised how much this bothered me because I had already gone through it in high school and the real world as a working adult. Their goal seemed to remind me that I wasn’t physically fit like them or was only half a man because of my lack of muscle and probably how my interesting-looking feet looked. Eventually, I learned to tune most of them out. After all, I was there to get an education so I could get a better job.
In God’s Plans of doing things, He brought a Christian man into my life to be my college roommate for the last few years of school. This guy was kinda nerdy and very smart, had polite manners, and was fun to hang out with. He was one of the first few college-age guys who treated me with respect and not some kind of problem because of my recent diagnosis with CMT. We would go on to be lifelong friends, catching up with each other in our later years, which seemed to be picking up where we left off. Ed has always been a source of encouragement and has done his best to help me see the positive in everything. In these later years, when CMT seemed to be making strides faster than I could keep up with, it’s been an awesome help to have him around to text my frustrations. This friendship may not have come together if I didn’t believe in God and become a Christian many years ago.
When I look back over the last thirty or so years, I can see where God directed my path to the right doctors, specialists, physical therapists, chiropractors, massage therapists, a personal trainer, and a service dog. All of these came together to help me have a healthier and happier life. I know it was all God’s doing, as I couldn’t pull together such perfect medical care no matter how hard I tried. At age 60, I am using much less medication than I originally thought I would, which gives me a much more quality of life.
So, yes, becoming a Christian and following Jesus is my best tip!
Yes, earlier this year, I celebrated my 60th birthday, and am so happy to have reached this milestone in my life! I know, you think I am a bit crazy, right? Well, no, not really. I could get all depressed about getting another year older, but that’s a negative way of looking at things, especially the blessings in your life.
God doesn’t promise us another minute or day in this life. Every minute of every day that I live, I am thankful. It’s a gift God has given me. Sometimes, I wish I’d done more in my life, such as working in a management position in my career. Frankly, Charcot-Marie-Tooth (CMT) would have prevented me from being the best I would need to be to work in that type of role. However, I was able to work a career at the highest level that I was comfortable with and have a pension to retire. They say, I could have worked longer and made more money. I say I have had too much fun in retirement with my wife, dog, and cat to trade it for more money.
Another point for me, at 60, I am still walking. Yes, I wear braces for any distance passed a 1/2 mile. Sometimes, when I am walking on unfamiliar surfaces or known challenging terrain, I will use a cane to help with balance. However, I am not confined to a wheelchair as was the original prognosis when I was in my twenties. Sometimes, it is a bit painful to walk, but, the moments of walking with my dog are absolutely priceless, and I wouldn’t give them up for anything.
In a few weeks, my wife and I are taking off on a short trip to celebrate my 60th birthday. We’ll head to the infamous Horseshoe Curve National Historic Landmark, Altoona, PA, as well as some smaller towns, Lilly, Cresson, and the Portage area where I will photograph and video trains. Our meals will be at our favorite places, Texas Roadhouse and Perkins. Since neither are located near us now, we enjoy them when we can. We did this trip a few years ago and enjoyed ourselves.
My wife bought me three bluebird houses that I have had my eyes on for a while. I enjoy watching birds. Now that I own some land, I am converting part of the yard back to nature which will include a bluebird house trail. She knows my love for nature so she wanted to celebrate my 60th in a big way.
Though God told me He would be my strength and ability if I just trusted in Him, I never dreamed that He would make me so happy at sixty years old doing more than I imagined.
So happy birthday to me. I’m happy how God has blessed me to live this long in life.
Happy Father’s Day! I hope you are enjoying time with your father or someone who has been like a father to you in your life.
I created the special “Father’s Day” graphic to remember my father this Father’s Day! One of his favorite events to attend was the Washington D.C. Auto Show held at the Washington D.C. Convention Center every January. It was three levels of nothing but new cars, pickup trucks, SUVs, mini-SUVs, and the like.
As a young boy, Dad would take us every year to the show when it was held between Christmas and New Year’s Day. Along with that was a trip to McDonald’s and a hobby shop to look for train models.
As I grew older, our trip changed as it was moved to the end of January. The hobby shop had closed years ago, and my interests had changed too. I would take the day off from work and go every year with my father to the new car show. After the car show, we would head to Tower Records, which had the best classical music CD selection anywhere. We always came home with our arms loaded with information on new cars and, of course, new CDs to add to our collections and listen to while going through the new car material… again.
As a man with Charcot-Marie-Tooth (CMT), those trips were challenging and often very painful on my feet. And, I would always end the day in lots of pain, never failed. However, I never told my father that. I’m guessing he had an idea, but we never really discussed it. I didn’t want him to know because the day always meant something special to him.
While we were never able to toss the football together or do some of the sports activities like other fathers and sons did. However, we went to car shows, went on steam locomotive rides, enjoyed hot rod car shows, and did many other activities like those instead.
As I’ve gotten older, getting around suburban areas like Washington, D.C., has become more difficult, and the pain has increased. When the Car Show commercial comes on TV each January, I think how nice it would be to go again with my father.
I miss Dad. While I have thought about going to the Car Show with someone else, it is a matter of distance now that I’ve moved to the country. And, it really would not be the same without Dad.
“For to us a child is born, to us a a son is given; and the government shall be upon his shoulder, and his name shall be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace.” -Isaiah 9:6
Merry Christmas my friends! Today, we celebrate the birth of Jesus many years ago. He was born a baby who grew into a man sharing His Ministry throughout the land. He was God’s Son. He was crucified for our sins so we would have a choice of heaven or not, when we die.
Thanksgiving brings to mind many things in life for which I am thankful. Although I try to remember to be thankful every day, it’s good to have a day to focus on it.
I am very thankful for God and His Love for me. Ever since I became a Christian many years ago, I have seen God’s Work in my life in every situation even at times when I wouldn’t think He would do so. I am thankful that His Gift of Salvation that guarantees me, and everyone else who believes, eternal life in heaven.
I am thankful for my wife of twenty-six years. She has been an awesome help with my Charcot-Marie-Tooth (CMT) battles and a wonderful companion to spend life with. Only God could prepare a woman like her to be the right companion for me.
I am thankful for my dog, Abby, and my cat, Samson. Abby is a young black labrador retriever who keeps me going. As I will share more details in another post, having a dog to care for every day has helped me to be successful in staying a step ahead of CMT. My cat has had his role too. Many evenings when I head to bed, my cat will curl up on my shoulder and purr. Somehow, he seems to know when I need some extra purrings and goes into an amazing-sounding purr mode. It usually helps me to relax.
Today, at 59-1/2 years old, I am thankful to be alive, walking, and enjoying life. The original diagnosis of CMT, lead me to believe that things could be very different at this age. In some ways, it is, but God has blessed me to keep going forward in life. For that I am thankful.
However you are celebrating today, remember to be thankful for the many blessings in your life. Take the time to enjoy family and friends too. They are the most important aspects of your life.
Every morning I set out to walk my dog, Abby, almost always without fail, I open the front door to step out onto the porch and the first words out of my mouth are “Thank You Jesus!” repeated more than a few times. My dog usually looks at me like “what Dad?” as we head out.
As I walk Abby, I cannot help but be in awe of God’s Creation and how beautifully it all comes together. The mountains several miles from me stand majestic and beautiful. Today, I can clearly see them in a blue hue since the summer’s humidity has settled with no clouds in the skies.
We live on a gravel road now with no sidewalks just houses and treed lawns that are spread out far apart. The gravel road is different from the asphalt pavement we have walked many times before. Somehow, the gravel adds to the awesomeness of nature as it abounds around me. I know that sounds odd, but maybe its beauty is brought out after spending 58 years walking, driving, and living in the asphalt jungle known as suburbia.
While walking, I see the beauty of the trees, many different species with leaves of intricate design. It is just incredibly amazing to see the leaf’s detail as it all weaves together on branches to the trunk of the trees. Across from my house’s front door and along the gravel road, the trees line the roadway with so much beauty. Many of them look to have been here back to the day God planted them on this earth.
Of course, living out here where I can enjoy the beauty of nature includes wildlife. We have encountered deer who immediately gallop off into the woods as soon as they see us coming. The occasional squirrel is a bit odd since they were often found in the city. As we walk, we pass through some natural areas which look as though they haven’t been touched by man at all. The beauty in this area causes me to pause to look for more than a few minutes. Abby gives a look, more than a few sniffs, and her attention directed to what could possibly be in this forested area. My guess is probably the bears I’ve heard about from the neighbors, maybe a few opossums, skunks, raccoons, snakes, and the list could go on.
As I enjoy this beautiful area I now call home, I can’t help but be overwhelmingly thankful that I know the Creator who made all of this. In my youth, I learned the many theories which teach how our universe came together. I couldn’t fathom that something so magnificent, so glorious, so intrinsically detailed, so interwoven together creating the beauty of nature, could happen from an explosion or by any other means. No, it was created by God. He created it all. I have to admit I wonder how He did it. Was it created from a thought that brought it all together? Or, did He handmake all of creation? Did He swipe His Hand across the earth causing it all to come together? That’s something I will ask Him when I get to heaven.
When walking Abby down the gravel road, I talk with God about life while enjoying the beautiful scenery. He is like a best friend and we talk often. As a child, I became a Christian and have believed in Jesus, God, and the Bible ever since. I have had some questions along the way, but God answers them in the way that He does. For me, I wouldn’t trade this walk with God all these years nor all the coming years for absolutely anything this world could ever offer me.
The next time you see a tree or a beautiful place in nature, ask yourself, “do I truly know the Creator of all this?” If you do, excellent- see you in heaven one of these days. If not, here’s how to learn more, Peace With God.
“The Gravel Road in Nature’s Beauty” (C) 2022, Isaiah Jacobs
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.
