Fighting MS Can’t Be My New Year’s Resolution.

A notebook ready to be filled with New Year's Resolutions for 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.

Can’t talk. At church.

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. 

I don’t trust you.

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. 

living my best life

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.

Stop chewing with your mouth open and maybe move out of your mom’s basement, Brian.

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. 

Although a Nobel prize for actually making peace with this beast of a disease would also be nice.

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.

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33 thoughts on “Fighting MS Can’t Be My New Year’s Resolution.”

  1. Louise Fishleigh

    How motivating and good to hear! Your personal best makes it better for us all!! Much hope and promise for 2022! Thanks for being a bit of brightness for me! It’s gloomy rainy here today! Because of you I do more and push harder!!thank you! Happy New Year!

  2. Happy New Year Ardra, and thank you for keeping it oh, so real. Thank you for showing up for all of us – it turns out we really ‘need’ you (okay maybe we really ‘want’ your fresh and feisty words, but it feels like ‘need’). We love you 🧡. Have a great year ahead! I’m so looking forward to catching your show in February.

  3. Happy Happy New Year ARDRA, To The Banker, And To You🎉! Your New Year’s Day’s Entry Is Accelerating, Energizing; One That I Will Read Many Times Over!
    I have never had anyone within my circle of friends that have provided me with the MOTIVATION that You Have! I Am holding On, Tight, Never To Let Go, And To Keep Fighting. ThankYou For Inspiring Me, Again, And AGAIN!

  4. A good friend who just passed afyer 3.6 years of cancer inspires my new year resolutions. He did not fight dying or disability; he put everythng into living. He learned new things from martial arts stick fighting in his backyard to learning Irish Gaelic and Japanese, writing short stories and reading recommended and classic books, trying new teas and recipes. Spent time howevr possible to do with former colleagues, friends and family.
    So many of the items are the type of things I can do having MS. Sometimes we focus so much on what we can no longer do or sy not be able to do tommorrow, that we miss opportunities to do what we can today.
    I made a list of 22 reasonable activities to aspire to complete this year. Maybe I will add something a little more exotic, too.

    1. You are so right, Michelle. 22 ideas sounds like a lot of possibilities and positive experiences to focus on in 2022. I’d love to know what’s on your list!

  5. I truly wish I could share the intirically challenging, emotional and painful aspects of my ever so long journey with MS but alas, my fingers no longer cooperate to navigate a keyboard for very long. Keep fighting is key, primarily mentally and emotionally!!!!

  6. Ardra, you truly are a super hero! “Walking on air” is a perfect description of how M S feels. When you walk around the block, do you have assistance? Do you use your rollator, or cane? I still can’t accept that my legs won’t do what the brain instructs. I must keep improving!

  7. Thank you Adra for your inspiring words. I have belly laughed and cried with you for years now, and always get excited when I see a new post from you in my in box. This disease is similar to being on a tightrope, a little too much of this or that can make us plunge. Staying on the rope is exhausting and frustrating, but we don’t have a choice.
    It is sharing this horrible disease with someone like you that makes it a little more bearable. Keep up the great work in making us laugh.
    xo

  8. This pushes back against the cultural paradigm we are all caught up in; goal-setting and progress as the most worthwhile way of doing life. This post is an important reminder for us normals, too. Xoxo and Happy new year!

  9. Love hearing about your Pons. Legs r my biggest nightmare. Just fatigue out so darn easy. No matter what I do. Who sells the Pons. Do I need to do physical therapy With it. I am sure in Michigan most therapist don’t know about it. I think u said it was over a 1,000 bucks. Thanks

  10. Happy New Year, Ardra!
    Your progress is a bright light on a snowy and dark January day. I’m listening to the wind howl in my 30th floor apartment and I don’t despair because you have defied the expectations of MS.

  11. Another blogger – I can’t remember which one at the moment – recommended your blog to me, because I often blog about my fibromyalgia. I appreciate your thought process regarding about not basing your happiness on how the disease behaves. This is also how I attempt to operate. Some days are better than others. At this point the commonly held belief among the medical establishment is that fibromyalgia is not progressive. Many of us would argue that point. And research last summer pretty well proves fibromyalgia is an autoimmune disease.

    I love your attitude and zest for life. Happy 2022 to you!

  12. Happy New Year! As always, you Inspire me, make me laugh, make me cry, encourage me and make my goal to someday share a glass of wine with you even stronger! Sending blessing to you, the Banker and your furry child. Stay walking!

  13. I have so many thoughts as I read what you write, where do I start? Sometimes, I feel that way too! Taking some similar paths …….. It’s also so positive to hear the new ideas that you are beginning to work on too! Good luck!!

  14. With three autoimmune diseases I often feel like I am performing a precarious balancing act with my central nervous system and MS. It’s hard. I don’t pretend it isn’t. But, like you, I focus on what I can do (a lot!) and try and remind myself daily of a few things that I am grateful for. On more challenging days I usually take more time for this exercise and let my list get long and meandering. It keeps my perspective in check.
    Wishing you all the best for 2022. Look forward to your posts!

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