My feet feel normal. This might seem like a weird statement if you have everyday feet, but when you have CMT(Charcot-Marie-Tooth) disorder, this is quite the accomplishment. I can flex my toes off the floor. My feet don’t automatically want to dive-bomb the ground. I can lift them off the floor, with the angle between my foot and the ground more normally acute and my heel a more customary vertex. I can jump up and down a bit; I have more control over my landing. I generally feel steady. I can, in fact, stand on one foot, if for noticeably short periods. If I concentrate, I can stand on my toes a little without holding on to something.
Of all the chronic, invisible illnesses with which one may become inflicted, CMT is perhaps one of the most invisible, least talked-about, most frustrating, and most unknown. CMT is one of the most common inherited neurological disorders, and yet, according to the National Institute of Neurological Disorders and Stroke (NINDS), only 126,000 people in the United States are affected. CMT is one of a group of disorders that damages the peripheral nerves. These are the nerves that send information from the brain to the rest of the body and then back. These nerves also control the muscles.
The resulting weakness from this poor signal can appear in early adolescence or early adulthood. It typically starts in the legs and feet and then may spread to the arms and hands. It progresses gradually. According to this timeline, I am right on track. This is not a train that I wanted to meet at the station, but here I am. And now I’m in my seat, checking off my life against the constellation of possible symptoms. There are a multitude of matches. Muscle weakness? Check. Decrease in muscle bulk? Check. Difficulty lifting feet and tripping and falling? Check. Balance problems? Check. High arches? Check. Decreased sense of proprioception? Check. It can even cause some mild scoliosis, which according to one my health records, was present when it was just my lower back that was being investigated.
All the signs that something was up were scattered like breadcrumbs along the path of my life. I always had multiple complaints about my feet; they were doing this, they were doing that, I stubbed my toes on something for like the millionth time, or I’ve somehow ripped my toenail off. They sure look ridiculous, with their excessively high arches and narrow shape and bones sticking out more than bones should seem to protrude. A relative lack of coordination and poor athleticism are not terribly uncommon traits, but I now more fully realize the poor control that I had over my body growing up.
I badly sprained an ankle working out once, and just let it heal, because you know, that is what you do instead of having it examined in a professional medical setting.
I took up running as a way to get in shape, and as with most things that you do with any sort of repetition, made improvements in both speed and distance covered, but even then, the gains were modest given the number of years that I kept at it.
I eventually moved into my own place, where my own two feet found me again, and I completed the work on my ankle that I had damaged years ago, with a trip and fall in my apartment. This time, it came accompanied with some numbness in my foot that I think has finally only recently abated. Either that, or I’ve just become used to it. It hurt. I let it heal, but the seeds of an investigation had been planted. As you will notice, the theme of this story gradually reveals itself, taking decades to pull back the curtain, slowly revealing more and more of its plot.
I kept up the running in the meantime, part of a fitness plan that I had gradually been putting into place since the end of high school, making it more and more intentional and consistent. However, it was either this sprain or some others that followed (forgive me, the timeline blurs a bit), that finally made me answer some nagging questions that I had been having.
The first doctor’s appointment was with a podiatrist. He was the first one to say those three words, a trio of names linked together, Charcot-Marie-Tooth. He suggested that I might have it. Had I heard of it? No, not at the time. My foot shape was one prone to injury. Running must be painful to you, I’m surprised you do it. Other useful tidbits regarding the appendages at the bottom of my body followed. It was an enlightening and informational appointment.
This was not to be the end. There were multiple appointments with a neurologist, the first of three appointments in which I had an electrical conductivity test done, and a series of physical therapy appointments. I’ll never forget the further revelation I experienced when some genius PT placed her hands on my left foot, moved it to the right a little and within what seemed seconds figured out what was wrong.
What was wrong: a completely torn ligament, one of the ones that wraps around the side of your ankle, a rupture of one of the many fibers that hold your entire body together. As I sit and write this, I presume, based on my own knowledge and that of the accumulated knowledge of many professionals, that I began this disruptive ligamental work the day I incurred the sprain many years ago working out in my childhood bedroom, and finished the task walking in my grown-up apartment. But I digress a bit; all these injuries and information were building into a whole.
I cannot now remember all the fine details, but eventually a further series of occurrences (there was a fall at work somewhere in there) brought me again in front of that same podiatrist, several years having separated the appointments, where he again brought up Those Three Names. This time he seemed more certain, and said, however, I should get a second opinion from a neurologist. He also said that running was not the best type of exercise for me. I requested a different neurologist, as the former one never seemed to have much time for me.
So, in the fall of 2016, before my health insurance ran out from the job I had quit a few months prior, I received a confirmation of my diagnosis. Not a 100 percent confirmation, a genetic test would need be needed for that, but a 99.95 percent diagnosis – “The findings are consistent” type of diagnosis that was good enough for me- I had CMT.
Since then, I have not had to attend any more appointments. I take no medication for this. There is no surgery. There is no cure. I have nothing with which to follow up. I don’t feel a need to wear my ankle braces on a consistent basis. This makes me lucky. I realize that I am lucky. I have been fated, it seems, to take part in the chronic condition poker game. I have drawn a good hand.
So, to my home gym I go. Exercise is the only thing that I have discovered that keeps the manifestations of the disease at bay. I stretch, do yoga, complete resistance and strength training, sweat with some cardio, work on my balance, and challenge my feet and legs with a variety of plyometric (jumping-type) exercises. I ride my bicycle and run short distances. I work in my yard and house. I keep moving. Exercise is also recommended to slow the degeneration of the nerves and improve muscle strength. These activities are the only ways to keep improving my balance, the only way to keep my feet, ankles, and legs strong enough to overcome the weakness that bombards them. It is the only way to improve my proprioception (the sense of your body in space) which I am convinced is affected because my brain and body don’t always want to communicate well.
It is only through this effort that I have regained any of the newfound flexibility in my feet, the only reason why I can feel myself move more easily, the only reason why I can find my balance and poise at all. The only reason why I can get away with going barefoot, the only reason why I can continue buying and wearing cheap shoes instead of spending my constrained budget on something more expensive. It is the only reason why I can continue making modest gains in my resumed running (albeit with my ankle braces on and despite the podiatrist’s words), the only reason why I can enjoy a full and unrestrained mobility. This exercise, then, is the only thing keeping me from facing any degree of physical disability. I am glad that I started when I did; glad that I have kept it up.
This has been a stunning realization. Especially when I compare the times that I have actually found it difficult to move forward, actually found it difficult to walk normally, to glimpse my possible future, to where I am now, being able to move in a way that is relatively light-footed. Thus, has fitness become critical, essential, life-preserving even.
Even with this self-wrought improvement, there come limits. These I accept. I’ll never run a marathon. I’ll never be a great dancer. I’ll continue to have to find another way to keep time while making music, because I cannot tap my feet when I’m standing; even while sitting, this motion can be difficult. Heights freak me out because my sense of balance and myself in space is compromised. Jumping, hopping, standing on my toes is difficult. Do not ask me to walk on my heels. All these things are minor, I realize; that is why I am lucky. But to realize, come to grips, and accept that there is, in fact, something amiss with your body, is a sobering thought, and one with which anyone who lives with a chronic condition must contend, not for a short amount of time, but for the entirety of their lives.
So, I will accept my limitations. What I will not accept is that I cannot do something about them. That is why my fitness routine has become woven into the fabric of my existence.
I don’t know what the future holds for me. I don’t know how long I will feel movement come easily to me. I know what I can do NOW to help myself. I’ll do it as long as it is sustainable and then address what comes down the road, knowing that what I’ve done will be an asset to me in that uncertain future. I have seen my condition progressively worsen. I’ve put enough pieces together to know that it is not going away and will not get better on its own. Nor is there any other effective treatment, other than what I’ve undergone and discovered on my own. Chronic conditions are often like this. So are illnesses that look “invisible” and lurk in the hidden corners of human brains and bodies.
We should continue to be kind and helpful to each other. Because what we see on the outside is only part of the story.