Day: 1 January 2022

I feel like I’m not supposed to say this, but I liked 2021.

Yeah, I know a lot of it still sucked. I miss my Nova Scotia nieces and I would give up Miss Vickies forever if it meant I could feel safe getting on a plane for a beach vacay. But in 2021 I got to go to Gord and Jen’s wedding. I ate moules and frites on the patio at Le P, I sipped lattes with friends at Ezra’s. Manicures felt like miracles and hugs brought me to my knees. Whatever I took for granted as ordinary in 2019, felt sacred in 2021.

I also got to experience the legitimately exceptional this year. Fashion Dis—a television show about beauty and disability, a show I co-created and host—was filmed, and is coming to the Canadian small screen in February. 

But what I’m most grateful for from 2021 are the changes to my MS. After 21 years with this disease, changes are almost always a bad thing. I’m still rocking a rollator, and I definitely had to be picked up after I fell sideways into my parents’ Christmas tree; but, with the help of a neurostimulation device and intensive physio, I’ve had changes to my MS this year that have been, frankly, exhilarating.

Fighting MS, tho?

Every day (okay, not when it’s minus ten, or when it snows, or when the jerks on Huron haven’t cleared their damn sidewalks), I do a timed walk around the block. For six months I’ve been seeing my walk times consistently improve, and it feels like, I don’t know. Heroin? I’ve never tried heroin, but I hear it’s potent shit. And the high of shaving time off my walk is pretty freaking addictive.

Of course, it’s complicated, and just like heroin, there’s a downside to my intoxication. The high I allow myself to feel over any health gains is directly connected to the anxiety, panic, or straight up agony I feel the second those gains feel threatened. 

Par exemple, today when it took me 14 minutes and 9 seconds to cover the block—a full 2 minutes slower than my personal best and almost a minute slower than last month’s average—I felt tempted to spiral. I’ve had a string of bad MS days, and I started thinking about how there are only two days left in December, and this is the first month since July that I haven’t clocked a new personal best. Is this the comedown already? Time to sober up and face the beginning of the end of my last best hope?

I know I’m overreacting. I don’t want to always be bracing myself for shit to get worse, but at the end of the day (and let’s face it, the fucking start of the day), MS is a chronic progressive disease.

Chronic = forever. Progressive = it gets worse.

(Happy New Year!)

While the problem with heroin is clear, what’s not so obvious is the downside to allowing any of my recovery to dictate my sense of well-being. I know my improvement is good news, that it’s worth celebrating, that it’s worth shouting from the rooftops, but I need to slow my roll, because I also know how temporary, how fleeting and fragile my physical strength can be. I realize that (even if I haven’t been able to put this wisdom into practice yet), my happiness cannot be tied to the state of my MS, even when my MS is doing better.

My goals for 2022 are big and small. I want to travel with The Banker as soon as it feels safe to do so. I hope to film a second season of Fashion Dis. I want to finish writing the book I’ve barely started. I want to sip mimosas on patios with people I love, snuggle with Tilly, reorganize my closet. Creativity and connection are what fill me up and give me purpose. These are completely achievable with or without fast walking, slow walking, or even no walking legs. If my goal is to thrive in 2022, this is what thriving looks like for me, even with MS. 

Obviously, I still have health goals. MS goals. I can’t pretend I don’t desperately want to continue getting stronger. The resolution my heart and guts want to make—the one I can feel deep in my stomach, that on face value seems noble and wise and practically anyone would encourage, is to keep improving my mobility—to walk faster and be stronger in 2022; in short, to keep fighting MS.

Desperation is a terrible foundation for goals.

I spend a lot of time and energy trying to stay ambulatory, and I’m not for a second going to stop pursuing this. (I mean, maybe a second. This life is exhausting.) But I’ve spent just as much time and energy trying to come to terms with the reality that I might not always be so ambulatory. Making room for the possibility that all roads don’t lead to total paralysis feels like taking back the bad boyfriend who promises this time will be different.

Fighting MS is a losing battle, and I am not a loser. The goal I need to set for 2022 is: to do my best. As a not-at-all-sporty indoor-girl, I’ve received my share of patronizing participation ribbons over the years. But maybe there’s something worthwhile about recognizing our efforts. Maybe we do deserve a prize just for showing up. Showing up can be harder than it looks. 

In 2022, I want to take a more neutral approach to how my body moves. I want to remind myself, or maybe even convince myself, that walking faster or stronger is a nice-to-have, but it cannot be a need-to-have; a standard that sets the bar for my overall happiness. My success or failure, my joy or sorrow, cannot be measured in seconds and steps.

I’m not ready to put down my stopwatch and quit measuring my progress. I will forge ahead, PoNS in mouth, doing my utmost to give my body its best shot. But, my goal for 2022 is to get off this rollercoaster. Instead of being overcome with joy when I see improvements, I will politely and calmly thank myself, not for setting new records, but for my commitment to myself. When shit goes left, instead of assuming worst case scenarios, I’ll thank myself twice for showing up and for doing my best. The rest is out of my hands. And my legs.

Twenty four hours after finishing this post, and still a day to go before the new year, I clock a new personal best: 11 minutes, 58 seconds. I take a deep breath and try not to fall off the wagon as my resolve to remain neutral is already being tested. When I examine my feelings though, I realize it’s not joy I’m trying to subdue. What I actually feel is relief. I’m on the right path. I just need to keep going.

Happy New Year, Trippers. May you do your best in 2022.