My newest journey begins

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  Most of us have heard it before. There are no guarantees in life.

  Recent events have drilled that into us repeatedly. We should all be on our knees daily, praying for anyone affected by the coronavirus.

  For me, though, the lesson of “no guarantees” has become increasingly clear over the last year due to my own health concerns.

  It all came to light around this time last year. I had been having more issues than usual with my balance, and it seemed like I was stumbling or falling all the time. I’ve always been a bit clumsy, and I figured my age and lack of exercise were just making the situation worse.

  But there was another cause for concern. When I was just a few weeks old, I was diagnosed with hydrocephalus, or fluid on the brain. I’ve had a shunt in my head since I was eight weeks old to drain the fluid out to the rest of my body.

  The shunt has helped me tremendously over the years. As a result, I’ve been able to enjoy a relatively normal life while being careful not to take any shots to the head or play contact sports.

  But, I had my last surgery when I was 11 years old, and we thought perhaps issues with my shunt were causing my balance problems. My Mom – being the persistent person she is – convinced me to go to a hospital emergency room to get checked out.

  It’s a good thing I did. Although the X-rays showed that shunt was working properly and there were no problems with it, I was quickly referred to a neurologist to get the bottom of my balance issues.

  At this point, I was starting to freak out a little bit. But, I did my best to remain calm until I knew for sure that there was something to freak out about.

  The neurologist took note of the high arches in my feet, which was no surprise. I’ve known for a long time that I had some form of neuropathy in my feet, and that the high arches contributed to that.

  Still, he ordered up a nerve-conduction study to examine that aspect of my situation further. For this study, he ran a little vibrating tool up my leg, beginning at my foot, and told me to let him know when I felt any sensation.

  He got halfway up my shin before I felt anything.

  The neurologist then informed me that my symptoms were severe and consistent with a condition known as Charcot-Marie-Tooth Disease.

  CMT – named for the three men who identified it in the late 19th century – is a rare, degenerative, hereditary nerve disorder that affects the arms and legs. It affects an average of 1 in 2,500 people in the United States. There’s no cure for it, and my understanding is that this condition will get worse over time and eventually plateau.

  When I received this diagnosis, my mind went into overdrive with a series of questions:

  “What happens now?”

  “How bad is it going to get?”

  “Am I too old to do anything about it?”

  “Am I going to end up in a wheelchair?”

  “Is this condition fatal?”

  The doctor assured me that there were steps in place to address my CMT, and we set up a treatment plan starting with physical therapy. Suddenly, it was apparent that this condition would become part of my new normal.

  At that point, I thought about everything that led to my diagnosis – including hydrocephalus, high arches, and my hypervigilant mother’s insistence that I get checked out. Everything started to make so much more sense. And, I began to realize that God was in the midst of it all.

  I had no way of knowing, when I went to the ER for my shunt, that I had CMT. I didn’t realize my abnormally high arches were a sign of something more serious. I didn’t know the problem was about more than being clumsy. But God knew all along.

  Since my diagnosis, I’ve encountered others who have dealt with this condition for much longer than I have. In the process, my new normal has brought its share of changes into my life, which I will explain in future columns.

  I’m not an expert on CMT, by any means, nor would I ever claim to be. I still have so much more to learn about it, and my journey is just beginning.

  What I know for sure, though, is that God is with me. No matter what happens with this condition, none of it will take Him by surprise. In a world of no guarantees, He is the One I can count on.

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