Personal essays are a bit challenging for me. I am an open book. That’s both honorable and detrimental. Honorable in that trustworthiness is a value I hold most dear, and social media has taught us that trust can be as elusive as the pot of gold at the end of the rainbow. Detrimental because unvarnished truth means all flaws are laid bare for everyone to see, and we live in a time when truth is often varnished.
Let’s give this a whirl. Writing is cathartic for me, and when I know I’m writing to share, I tend to write with frequency and truth. When I’m writing for my own purpose, not to share, I tend to write infrequently and with a splash of varnish. I need the catharsis, so sharing is paramount to that process. As a woman in evolution, physically, emotionally, and hormonally, I relish the idea of building a community of followers. Maybe we can share our evolutionary journeys together.
Let’s start today with a story related to the physical evolution.
I have facio-scapulo muscular dystrophy [FSHD]. In case you didn’t know, it sucks. Muscular dystrophy is a hereditary neuro-muscular disease that results in progressive muscle weakness and atrophy. FSHD is characterized by weakness of the facial, abdominal, upper arm, and shoulder muscles. Distal muscles, such as those in the lower legs and arms are also often affected. While my presentation is considered mild, I have the full effect; my lower legs are bone thin, and I drop objects with regularity. My smile is crooked and not really much of a smile anymore; I have what’s called transverse smile since the corners of my mouth don’t turn up as they should. I have a protuberant abdomen and lordosis. Those are fancy words for a curved lower spine (lumbar) and a potbelly stomach; I look perpetually pregnant. I’m not! Don’t you dare ask me if I am. I wear foot drop braces called ankle-foot orthoses so I can pick up my feet when I walk. Without braces, I trip and fall. My hips and knees work hard to keep me walking, so they wear out and quite literally buckle with too much exertion, like walking up and down steps, so I take the elevator. And let’s not forget the pain. Muscle wasting is a painful process! Silver lining? Massage therapy is amazing!
After reading all that, you might say, damn! She seems unhappy. I’m not. I actually consider myself quite lucky. Without muscular dystrophy I don’t think I’d be nearly as driven as I am. I don’t think I’d be as human. Without muscular dystrophy, I have a feeling I would be less empathetic. In my youth, I tended to be arrogant and abrasive. Now I’m a little more patient and a smidge more understanding. I realize life is hard for many people in their own unique ways, and while we shouldn’t make excuses for ourselves or for other people, we can extend grace and understanding. I think I was less capable of this extension before I faced my personal challenges. Adversity always has a silver lining that with care can shine like the newest of moons.
Enough of the boring explanations and onto the story.
Muscular dystrophy sucks, yes. But it can also provide entertainment. I prefer to allow the humor to outshine the shit.
Last evening, I attended a work event that was crowded. Wine and hors d’oeuvres were passed. People we work with every day had a chance to mingle outside of the constant stream of virtual meetings. It was a nice event with a friendly vibe. I have trouble walking, but as long as I’m in motion, I can throw my hips and keep my legs going one step at a time. If I stop or change directions suddenly, then I become wobbly and prone to falls. All that to say, walking is precarious. Standing is darn near impossible. I have to stand with knees bent and a wide foot stance to maintain balance. I essentially look like a toddler squatting to pee, which is not attractive for a 52-year-old woman trying to look pretty and professional. Even with that stance, I cannot maintain my balance for more than several minutes, and if someone bumps into me, I wobble like a bobble head doll and maybe even topple. My grip is equally unreliable, so I rarely walk with an open container, nor stand with a beverage, because, well, I’ll drop it almost every time. There were no chairs for sitting or holding onto for balance, and the space was so crowded that you really couldn’t move without bumping into someone.
Have I properly set the stage for humor?
Good.
So, before you ask, no, I did not fall. But each time an attendant approached me with a tray of wine, I didn’t just decline, I said, no thank you; I don’t drink. I was wobbling and bumping into people like crazy, so I wanted everyone to notice that I was not drinking since my body was behaving like a wine-crazed maniac. I also didn’t take a glass of wine because it would have ended up smashed on the floor. All I needed was to drop the glass and have everyone look toward me to see who had loudly broken a glass while also tottering around like an over-indulgent college student. I was standing with one colleague whom I like quite a lot and started to drift backward when someone brushed pasted me. She reached out as if to grab me while I somehow corrected my balance by taking two quick steps backward while leaning forward. Not my most publicly graceful moment, but, hey, I didn’t fall. And after that near miss, I went home.
Last night as I lay in bed, I decided to stop hiding my ugly braces and start wearing dresses again, even if they look ridiculous in knee-high carbon fiber foot orthoses and tennis shoes. At least the braces will make clear that my drunken walk is not actually alcohol induced, that I’m not avoiding steps in favor of the elevator because I’m lazy, that I’m not fat because I eat too much, and on and on. Time to embrace the braces and the walking cane, I think. Did I mention muscular dystrophy sucks?
To keep my promise of sharing unvarnished stories, I must confess that every day does not present a rainbow on the horizon and the promise of gold. There are days when I metaphorically skip down the yellow brick road of life believing in the magic of ordinary days. There are other days when I wander off the road into the forest to weep in silence. But then in my gloomy haze, I glance up and see the warning sign in glaring neon, “All hope abandon, ye who enter here,” and I make the decision to turn back. I find my way to the road, continuing my journey believing in magic; I am still the little girl who twirled in the rain, and I will not abandon her, nor she me.
Cheers to beautiful smiles and long walks in the rain, because what I wouldn’t give for a working smile and the muscles to take just one more walk in the rain with my Darling. That’s how he and I made the decision to give love a chance. I traveled many hours from the village where I was living in southwest Botswana to meet him in the northeast, which is about an 18-hour roadtrip. We took a long walk in the rain through knee-deep mud holes and then shared a kiss at the end. We’ve been almost inseparable since that evening in 2018. Now we when have the opportunity, we sit in the rain, and sometimes he twirls while I watch and laugh. We always christen the moment with a kiss. And somewhere in the mist, I see the ghost of the little girl twirling and my muscles find the strength to smile once more.
