A Mixed Bag: My Life with CMT

When writing, it’s funny how some of the most obvious things to say feel like the least obvious and literary worthy. Surely, this is true for me.

At 24, I have lived over 17 years with Charcot Marie Tooth (CMT), a slowly regressive yet nonfatal neuromuscular condition that affects my outer limbs. Because of it, the muscles below my elbows and knees have atrophied (shrunk) considerably—and may continue to do so. I walk slower and tire more easily. In rest state, my feet drop to the floor as if weighted down. Sometimes my hands feel weak and feeble, and as an aspiring writer, this scares the hell out of me. (Also, don’t even get me started on how I feel about some buttons on shirt collars!)…

These are likely the most obvious and notable signs of my CMT, but they surely aren’t the only or, sometimes, most pressing ones. But wait—I’ll get to those later. First, I want to recognize that this is perhaps the first time that I have truly and publicly expounded upon this part of my life in writing. Sure, I touched upon when it chronicling my hand-to-foot ascent of Mt. Fuji in September 2016, but otherwise, I have remained silent. And frankly, this fact baffles me: in person, I am an open book, far too readily showing willingness to discuss even the most tender aspects of my life with most people. Nevertheless, here I am, looking to be candid and real. I do so not merely for the sake of catharsis or social support, though it feels nice. Instead, I write these words because I hope they afford solidarity and hope to those who feel frustrated and humbly struggle in the quiet moments, often alone. Thus, these words are for those who live with CMT or uncommon [degenerative] disorders. They are also for the friends and family of anyone who lives with these challenges. Last but surely not least, these words are for those who feel category-less is any sense, as I do so often, feeling neither completely “able” nor one bit “disabled.”

Oh, and one last note: though others’ views and categorizations of me remain outside of my control, I hope not to be seen differently after writing these words. Further, as you read these words, may they educate and inspire, not sound maudlin or self-pitying, for surely that is not my goal.

***

Each day, when my alarm sounds at 6:40, I remain—quite literally—unsure of how my body will feel for the ensuing 16-18 hours. Thankfully, this thought rarely enters my conscious mind. Still, as history has so abundantly demonstrated, my CMT works in pernicious and unexpected ways. By 10 a.m. or literally any time throughout the day, the muscles in my legs, arms, feet, and hands could decide to throw in the white towel and go on vacation. Vacation, though, remains no option for me. I have a life to life, or as they say, “There’s no rest for the weary.”

Thankfully, days devoid of these frustrations have generally outnumbered days with them—that is, at least through this present moment. (And let’s hope it stays this way!) However, this fact alone introduces entirely new types of frustration: namely, unpredictability and shame. On my strongest days, I have climbed mountains, swam up to two miles at the gym, or have powered through up to 2 hours of intense, aerobic activity. On the toughest days, however, I feel sluggish, weak—as though my muscles are made out of Jell-O—and flat out exhausted. Oh, and let me say this again for emphasis: E-X-H-A-U-S-T-E-D! Since the neurons and muscles in my limbs don’t work properly, most things require more energy and effort on my part.

S0245750
Moments after climbing Mt. Fuji on September 11, 2016

 

All this say, though I feel tremendously grateful for my, for lack of a better word, “fully functional” days, I also struggle to know what to expect of and for myself at any point in time. If I establish my life expectations based on the metrics of my fully functional days, then I will always feel tormented and wanting, like Sisyphus or a dog chasing its own tail. I will shame myself and believe that I am not ENOUGH, that if I just tried harder or was stronger willed, then I would accomplish any goals in sight. (Of course, this is a ridiculous notion. All humans have limits; mine just happen to be more acute given the fact that my muscles have progressively broken down over time.) On the other hand, the alternative isn’t that great either. Wallowing in these challenges and maintaining an “anything goes” mentality, by which anything that I accomplish is better than nothing, surely doesn’t help anyone, least of all me. I’m stronger and better than this. Thus, like for most things, the “solution” is conditional and lies somewhere in the middle. I must continue to push myself, tell myself nuanced stories, and also give myself grace when accomplishing a desired goal isn’t in the cards at the present moment.

Or, to put it tritely, as I begin each day, I must subconsciously prepare for the worst while consciously expecting the best. Stated another way, mindfulness and deft mental gymnastics intimately factor into my everyday life. Of course, these mental exercises do not always feel easy or possible. After all, I am a living and breathing human with real human wants, frailties, and concerns, not some numbed-up firebrand who unwaveringly displays a “never give up” attitude. My skin is thick, but, like a cell, it’s semi-permeable.=

***

My life changed before my seventh birthday. After a normal childhood, physically speaking at least, I began to display widespread bodily fatigue, difficulty walking, muscular weakness, decreased stamina and sensation, and all the other hallmarks of a neuromuscular condition. All of this became obvious to my parents when, on vacation in Washington D.C., I struggled to keep up with elderly folks in our tour of Arlington National Cemetery. Naturally, my mom and dad exhibited typical parental worry. What the hell is wrong with my hyperactive, able-bodied six-year-old son, they wondered? Not long ago he was running with the best of them (the fastest children in the neighborhood), and now he is struggling to walk, their thoughts continued.

Of course, a whole battery of doctor’s visits, diagnostic tests, consultations, and medical trials followed. Heck, if you name a major hospital or medical center within few-hour radius of my hometown, I likely went there. Among them:

  • The Mayo Clinic (Rochester, Minnesota)
  • The University of Iowa Children’s Hospital
  • Shriner’s Children’s Hospital (Chicago, IL)
  • The University of Chicago Children’s Hospital (I’m pretty sure I went here, too, but after a while the appointments began to blur together.)

A few years later, I finally received a diagnosis: Charcot Marie Tooth – Type 2A, or “CMT” for short. Doctors told me that my symptoms matched the condition to a ‘t.’ My muscles would continue to atrophy, after which certain activities might become progressively more difficult, they told me. And for the most part, sadly, they have been correct. The nerves and muscles in my legs and arms have become accustomed to frequent dull aches and annoying cramps, especially in the presence of temperature extremes. My ankles remain chronically swollen to twice their size. I walk bow-legged, my quadriceps bearing most of my legs’ ambulatory responsibility. Finally, my balance sucks—seriously, I don’t plan on quitting my day job to become a ninja anytime soon!

Given all this, all but long gone are my days of stroking three-pointers in pick-up basketball games. (This has always been my specialty.) Nor do I plan on taking big hits in backyard football—or, for that matter, playing it ever again. Nor do I plan on trying to out-lift my eighth-grade self and push for new maxes on the bench press. Doing those things simply isn’t worth it if I am to walk and live in pain for the days and weeks to come.

At 24, I have mostly accepted these reasonable limitations. Further, through simple things like eating healthy, sleeping enough (I’m still working on this one.), and swimming, I have managed to take pretty good care of myself, though undoubtedly, I still have work to do. In the coming weeks, for example, I am seeking out physical and occupational therapy to improve the strength in my hands and legs. Even if, for my legs in particular, the chances aren’t great that I will regain strength, I must try. And, on a related note, I feel incredibly excited and grateful to know how many people back me in this great effort.

Still, parts of my life with CMT present challenge and uncertainty. If I think about it too much, I feel emasculated, weak, and puny. By themselves these feelings can be powerful. Doubtless, it surely doesn’t help that I live in the United States, where strength, physical ability, and my perceived desirability in the eyes of women form key tenets of my manhood, or at least the type of manhood that has been mass-communicated to me since birth. Traditional (‘toxic’) masculinity, thus, suggests that I am damaged, lesser than, because of something outside of my control. And sure, well-intentioned people can voice their admiration for me avidly (Please do! I appreciate it), yet this does not completely negate these hurtful cultural messages. Also, I should add, nor does it make dating feel any less complicated for me, as I sometimes worry whether women (un)consciously assess my likability or attractiveness based on something that lies well outside of my control. For the most part, thankfully, I successfully blind myself to these unproductive ideas. Because, if I didn’t, they would eat me alive. Nevertheless, sometimes it still remains difficult: uncertainly can have an insidious way of getting under anyone’s skin.

***

So what now?? What does one do when one of their main journeys lacks a defined destination or length? Well, it’s simple, you see: keep living…

And as I write this, I am doing that very thing! My life, like yours, is a journey: who knows where it will take me? I aim to give this world, including everyone that I love, all that I hold physically, mentally, emotionally, and spiritually. Although somedays I may be able to give certain parts yet not others, I am working to accept this fact. Surely, this reality still frustrates me greatly, yet I am consciously working to practice gratitude and afford myself love and grace. After all, I am diligently working to live my best life. What’s more, I have so many things to be grateful for. At one point in my life, my parents didn’t know if I would still be able to walk at 24. Now, look at me, ambling, swimming, and hiking my way through life. Some things may not be as easy, but I am here, doing it—each day, giving it all that I have.

Amidst it all, I have also come to appreciate new things about myself and humanity. I have learned to cherish a special type of strength that comes from not shaming myself after missing a workout because my body wasn’t up for the task. I have learned to, largely, disregard speed and to keep pursuing that finish line, whatever that may be. And last but not least, I have learned, literally and figuratively, that everyone deserves some one to sit with them at lunch—to remind them that they matter, that they are not alone, that the steps of this untrodden journey will be made together: you and me.

6 thoughts on “A Mixed Bag: My Life with CMT

  1. Oh my dear Ben!! Above all else, you DO matter, and you ARE loved!! Those of us who love you, don’t see the disability, we see a young man who God created with challenges….like all of us. But with the ability to show love, give love, and rise above each challenge with the knowledge that you are giving it your best shot!! Keep it up young man!!! God has great plans for you….and you DO matter!!

    Liked by 1 person

  2. Ben, your writing takes us into your world– one of intentionality, connectedness, bravery, and the abiity to see past what lies before us. Thank you for sharing so intimately and teaching us how to mirror that sharing so that we become “more real”. I look forward to your next words, although I think sooner or later they will be in book form. You are a writer. A great writer! Dana

    Liked by 1 person

  3. I never knew this about you Ben. You don’t see disabilities I see you. You were always there for me in school you always made sure you sat with me at lunch because no one else would. You are a very true friend.

    Like

  4. Thanks for sharing, Ben, the good and the bad. You have an amazing approach to your challenges and many are inspired by this! You are more than enough and you are not alone! You have such a huge heart and I am blessed to know you!

    Like

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