No Room for Pride when ALS Is Involved

“Humility is nothing but truth, and pride is nothing but lying.” ―St. Vincent de Paul

I never knew the comical extent of my pride until ALS hit me. Prior to its impact on my life, I prided myself on my independence and the manner by which I presented myself to the world. In my mind, I was fully self-reliant, and while not a fashionista, I was ever mindful of people’s perception of my appearance.

ALS led me to first become aware of, and later a fan of, ankle-foot orthosis. An ankle-foot orthosis, or AFO, is a support intended to control the position and motion of the ankle, compensate for weakness, or correct deformities. In addition to other applications, AFOs are used to control foot drop caused by a variety of neurologic and musculoskeletal disorders. By definition, they are conspicuous. By design, they are unnatural. By intent, one depends on them.

The goal of AFO use, to combat foot drop, is ideally accomplished by stabilizing the foot and ankle at a right or acute angle, thereby providing toe clearance during the swing phase of a gait. This helps decrease the risk of catching a toe and falling. As I was experiencing moderate-to-severe left foot drop, depending on my level of fatigue, my primary physical therapist recommended an AFO. Not only for safety but also to compensate for my thigh muscles having become quadriceps-dominant, thereby making me prone to knee hyperextension and related joint damage.

Rather than being thankful for the expert input, I was horrified by the anticipated visuals of the prospect. However, not wanting to risk alienating my newfound ally, I grudgingly agreed to proceed. In the off-chance circumstance that I would ever don the contraption, a pressing question emerged: Just how does one accessorize with a lone, large footprint, heel-to-knee, plastic, beige brace wrapping around 300 degrees of the circumference of one’s appendage?

The practical answer is by a trip to a shoe store. And not just any shoe store. You see, owing to the increased amount of space my brace-enhanced left foot was occupying, I went from an already clownish size 13 to a positively Mesozoic 16, EEE. Whether by coincidence or a savvy understanding (pun intended) of the AFO consumer market, an “extended sizes” shoe shop was just down the road. It was there that I was outfitted for one leisure, one dressy, and one cold weather “pair” of shoes. My receipt accounted for six pairs since each duo comprised dissimilarly-sized elements.

My impractical response to the sudden accessorizing dilemma was initially to not wear the $1,000 behemoth at all. Succumbing to pride, I somehow concluded that my spot on the local social spectrum would be irreparably devalued if I were to be spotted out and about sporting a left leg brace and wearing two shoes of different mothers. Mind you, l had lived in my community for less than a year, and only had extended conversations with a variety of work acquaintances, all of two neighbors and one periodic golfing partner. Yet, operating under a flawed, toppling dominoes theory (not unlike the one that compelled the U.S. to remain in Vietnam), pride kept on fighting.

All that it finally took for pride to concede was an embarrassing fall in a crowded gas station parking lot that the AFO would have prevented. As a throng began to form around me; as blood trickled from my forehead, chin, elbow, and knee; as pain began signifying that various locations on my body required attention; I had an unlikely (and, I’m sure, out-of-context to the onlookers) reaction. I began to laugh. By literally kicking me to the curb, my pride managed to motivate me permanently to return the favor.

From that point forward, l have gleefully gobbled up every invitation to avail myself of any mechanism or method that may make life even fractionally more livable. Oh sure, there are days when I must seem to be relying on something, or someone, to ambulate, communicate, bathe, eat, breathe; in short, exist. It’s true. My abundance of blessings keeps me afloat in what can be rather turbulent waters.

Blessings … now that’s the stuff to be proud of!

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