Health – Isaiah Jacobs

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!

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.