The Neubie is still impressing the heck out of me. I’ve made more lasting improvements and experienced more carryover with this machine than with all of my other treatments combined.
After 4 months of home use, I’m happy to report the following improvements in my left leg:
Am I walking better? Nope.
Am I improving the components needed to walk better? Yep.
Are these wins making me less angry about my disease process? Sadly, no.
You’re probably thinking, What the hell’s wrong with you? You flexed your foot 3 times? That’s amazing! And it is. But a slightly stronger tibialis anterior doesn’t change the look on people’s faces or the tone of concern in their voices once I get up to walk.
But then, something shifted this week.
After three years of having a diagnosis hanging over my head; Four and a half years of physical decline; Five years of a holding pattern that’s been hopeful (not getting worse) but frustrating (not reversing any significant disability), and six months of finally seeing a bit of progress, I made a meaningful connection this week as I watched the series finale of Pamela Adlon’s masterpiece, Better Things.
Better Things was a show about life’s fleeting moments. But unlike a traditional sitcom, problems weren’t magically solved in 30 minutes. It didn’t allow characters to give background details like in The Office or Modern Family. In fact, often, no details were given at all – just single words uttered in particular tones because sometimes that’s all you get from a teenager.
A nasty comment or a wrong choice by a character didn’t necessarily move the story forward. It would either be forgotten or begrudgingly harbored, but you were never told which had occurred. Once a plot point from season three reappeared halfway through season four for no other reason than to entertain us. The lead character, Sam Fox (also played by Adlon), after being verbally eviscerated by one teenager, taken for granted by another, then manipulated by her next-door-neighbor mother (all before the breakfast she was making from scratch with love), would simply serve it with a side of exasperation then drive them to school.
Sam (a D-List working actor who paid the bills without ever being featured on the cover of People Magazine) was not perfect. She just picked her battles. In fact, all the lead and recurring characters were messy. Imperfect, yet loved anyway. Unkind at times yet hysterically funny. Nasty and rude, only to be poignantly insightful when you least expected it. Her hormonally over-the-top teenagers would be given excess slack until Sam reclaimed her power, often by caustically using her words as weapons.
At times, instead of dialogue, we’d simply watch Sam grocery shop, cook dinner, or text while taking a dump (but always with a fantastic track from an indie band playing in the background). Better Things, like life, is simply a show about the chaotic, confusing, quiet, and benign moments we string together as we wait for bigger and better things to happen (either by us or to us).
MS was a big thing that happened to me while I was driving a mini-van to Target to buy underwear or some shit with my kids. Suddenly my I-only-need-to-buy-one-thing-I-wonder-how-much-I’m-going-spend-in-this-damn-store-while-these-crazy-kids-try-to-shake-me-down-for-more-stuff concerns flew out the window the moment I answered my cellphone.
That big August morning moment has stolen hundreds if not thousands of little things from me. Some are out of my control, and others are by design to avoid having a small undertaking (finding parking in Baltimore within walking distance of a restaurant) turn into a big deal (tripping and busting my face on the sidewalk) that ruins everyone’s evening.
In 2020, The New Yorker described the development of Adlon’s character as, “Her Sam Fox alter ego, at once wiser and more vulnerable, relentlessly capable and still somehow unable to keep herself from royally screwing up, is a far fuller creation.”
Like Sam Fox, I’m waiting for my “big break.” A massively successful “Fuck-You MS” moment when I put all the rehabilitation pieces together and walk like an average person to avoid suffering a big break in the form of a broken arm or orbital bone. And although that may never happen, like both Fox and Adlon, I’ve been relentlessly capable without royally screwing up.
Spoiler Alert – Better Things doesn’t end with Fox being cast opposite George Clooney. If anything, it ends with Fox being relentlessly hopeful. Relentlessly amazed by life. Relentlessly malleable without being relentlessly fearful.
As I’ve sat with Adlon’s finale this week, it inspired me to better co-exist with the weird, small, sometimes boring, slightly dangerous moments this disease forces on me. To accept them as is, instead of merely tolerating them while I wait to transform into something better.
The problematic way I cut avocados with one hand or carry things down steps. Or the cuss words that fly out of my mouth as I peel an electrode off my ass because, well, ass skin is tender! Or how when I’m trying to get to the bathroom after I’ve shot electricity through, near, and around my pelvis, I waddle like a toddler struggling to be properly potty trained. Maybe acknowledging the bizarre strategies I use to do my thing in whatever weird way I can is how I ultimately tell MS to “have a seat and hold my beer.”
I guarantee if Pamela Adlon was doing a show about living with a chronic condition, that’s the stuff that would make it out of the writer’s room. So in honor of that, I will try to better enjoy the little things because the list above is pretty darn impressive. It might not make me walk with ease later when I go to Costco, but it might allow me to take a lap without having to nap in the patio furniture display area.
But if I do, here’s hoping that, like the characters on that brilliant show, I won’t forget that life is funny, meaningful, and hopeful, even when it’s sad. Even when it’s ugly and embarrassing. Even when it’s boring. Even as you age. Even as you horrify others with your bizarre gait patterns. Even when it’s dangerous and disappoints you. Even if you continually fail. But especially when it’s truthful.