4.12.2017

8 Things You Can Buy That Make MS Suck Less

Recently, a Multiple Sclerosis website asked me and some other MS bloggers, about the ‘one thing’ we can’t live without as world-class Trippers. Most said things like relationships, family, or - barf me to death - hope. Someone even said nature. Nature! Don’t get me wrong - I’m not slamming these bloggers (although I am raising an eyebrow at nature - where spiders live and winter comes from). No. These bloggers are better than me. These are obviously wholesome and decent people who have their priorities straight and their shit together. I, on the other hand, went with something from a store, because I'm shallow and materialistic and anyway, I can’t tell you to love your kids, but I can tell you what’s on sale at JCrew. 

As blogger after blessed blogger blah, blah, blah’d their devotion to raindrops on roses and whiskers on kittens, I was beginning to think I’d misunderstood the assignment. I feel like the website thought so too, because they put my contribution dead last. Probably in the hopes that people would have stopped reading by then. Thankfully, one kindred spirit in the comments section said ‘wine’ and I felt validated. 

But Mitch Sturgeon of Enjoying the Ride said something along the lines of never labeling anything you can’t live without because, as he had learned, MS is a thieving dick that will snatch away almost anything you love. 

I’m paraphrasing. 

Mitch listed his gratitude for his voice, which he uses to tell his wife he loves her (of course), after having lost all the function in his legs and much of the use of his arms and hands. 
Oh. 

He uses his voice to write his book and blog and to operate everything from lights and fans to the tv. Because we live in the future. I’m getting side-tracked here, but I was humbled into my own gratitude for that which remains, and for a moment my cold, black heart was warmed; the cynic in me, subdued.

When that strange feeling wore off, I started thinking about what valuable insights I could provide. Clearly, this crowd knows all about the importance of networks, of support systems, of dogs. Of all the things money can’t buy. Okay, technically money can buy a dog. And money definitely buys booze. But what else comes from a store and can make MS suck a little less?

Guys, none of this is sponsored. All opinions are my own. You hear that Netflix? You're getting yet another free ride.

Speedi-cath. That’s right. While the rest of the MS bloggers were talking about how much they love, and can’t live without, their wives, I pledged my allegiance to a tiny, plastic tube that helps me pee. And I stand by it. I love this product. This insanely expensive, thank-God-my-insurance-covers-it, desert-island-item number one, product. Because if you’re gonna drink, you’re gonna pee, and this little gem is the size of a mini-mascara. The kind you get for free when you buy too much makeup. (Also on my list - too much makeup.)

CleanseMore. While we’re talking toilets, let’s just get the scatological out of the way. It’s hard to talk about bladder problems, and even harder to talk about bowels, but if you’ve got MS, odds are yours is an asshole. I finally found a product that helps me keep things under control. The secret ingredient is magnesium hydroxide. And unicorn tears. Seriously, this stuff is magic. Remember, everyone’s different, so talk to your doctor. 

Align. This is the last poo-related promo. I promise. Align is a high quality, life altering probiotic. Please don’t ever go out of business, makers of Align.

My blender. The only appliance I use every damn day. Breakfast is always a nutritious, fibre-y smoothie because, if I miss it, I pay. I guess I wasn’t done talking about poo after all.  

A shoulder-strap bag. So my hands are free to hold my drink and/or break my fall when I trip on the curb. I got a beautiful one for my birthday from my Brooklyn Bestie, who now lives in Manhattan and I don’t even know what to call him now, but that’s another story. 

Optimus Prime. Shout out to blogger Jennifer Digmann who pledged her love to Grape Ape, her badass wheelchair. I baptized my own mobility aid Optimus Prime because, like a real life transformer he converts from a cool blue rollator to a transport chair. And he can destroy Decepticons.  

Heated Socks. Spring is here but that doesn’t mean I’m not still wrapped in a blanket, typing away through fingerless gloves. My brilliant, battery powered, heated socks are technically for skiers so you know they’re cool. 

Plans. To keep my mind from wandering into Worst Case Scenario day-mares, I try to always have things to look forward to in my calendar. Technically, this is more elusive than the promise I made that you can buy everything on this list. So I’ll qualify it by pointing out that what you can buy is an appropriate outfit for said plans. My xmas party is 8 months away and it’s already in the calendar. Save the date! 12.09.17.

So, what’s the best product you’ve found?


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4.04.2017

Let Me Pee In Your Powder Room: An Open Letter To Toronto Restaurant and Bar Owners

I love my city. Our city. I love our theatres, our comedy, our shopping. I love our big city lights and our big, bold sign. I love so much of what this town has to offer, but more than anything, I love our food game. From poutine to poke bowls, from dim-sum to designer donuts, Toronto is one of the most diverse cities in the world and our food culture reflects that. A boozy brunch with my girlfriends or a night on the town is part of what makes city life, well, city life. Going out has always been part of my lifestyle.

And, for a long time, I took it for granted. 

Until recently, it never occurred to me that something as simple as dinner and drinks might be on the endangered list; that the combination of multiple sclerosis and this city’s inaccessible spaces would make it anything but simple. MS and out-of-date design are threatening the world of going out that I love so much. Like most, I took reasonable access to public bathrooms for granted. 

Part of the charm of Toronto, and of many cities, is old-school architecture. But overwhelmingly, this means most bar and restaurant bathrooms are located in dungeons beneath steep, sketchy stairs. We’ve all agreed that a safe place to pee is a pretty basic human right; restaurants and bars are required to provide potties. I don’t want to bore you with like, the law, or anything, but these regulations only protect a portion of the population.

More than 10% of Canadians aged 15-64 have disabilities (Stats Canada 2012). It’s higher than 35% for persons over 65. That’s a freaking lot of people who have nowhere to pee in the mind-boggling majority of places. 

In Canada.

In 2017.


We don't say "I'm in the mood to pee".

We say "I HAVE to pee".

While I wait for society to catch up, I’ve been coming up with some work-arounds to keep me on the bar stool and out in the world. When I’m invited to the cool new gastro-pub in the latest hipster ‘hood, I call ahead or check the AccessNow app to determine whether or not the place has a main floor bathroom. It almost never does, which means it’s gonna be more of a kangaroo rat-kinda night.  

These bitches don't drink - ever. Look it up.

Kangaroo rat-nights mean skipping slushy pink cocktails and generous glasses of wine. Those are classic pee makers. Kangaroo rat-nights mean ordering saltines and hard liquor, because drinking whiskey by the ounce provides a pretty good buzz with none of the inconvenience of water. 

Whether we're talking about gender, race, or ability, bathroom access can be a yardstick of a society, reflective of who, and what, we value. Before MS struck, my fully-functioning-legs privilege let me live in ignorance of this problem. If we don’t speak up, businesses might wrongly assume that accessibility isn’t an unmet need. 

Look, I get it. First the gluten people, and now this. It can be tough to make everyone happy in the restaurant biz. But aside from it being the right thing to do, business owners have the opportunity to be leaders in the next big social justice movement. Nobody really likes stairs anyway. Even healthy people groan when they realize they have to walk down the stairs to pee, tipsy and in stilettos. 

Still not convinced? Consider this:

Branding: Accessible businesses have bragging rights. Being ethical and inclusive will earn you the respect and repeat business of customers of all abilities. 

Reputation: Toronto is respected for its diversity and inclusiveness, as is Canada. As a business owner you help create and maintain that reputation.

Money: Accessibility not only affects disabled persons, transgendered people, and parents of small children - it affects anyone who wants to hang out with them. Accessible businesses reach more people. More people means more money. Don’t you want more money?

The Law: Many upgrades can be done inexpensively, and will pay off in the long run. The deadline for compliance with the Accessibility for Ontarians with Disabilities Act is 2025, so be forward thinking and do it now, while it’s still cool, before that nagging B, the government, gets all up in your face.

Here's an adorable picture of me.
Don't you want to serve me a drink, and let me pee in your powder room?

There are accessibility barriers beyond bathroom access that haven't been dealt with here. But bathroom rights are a hot topic right now, so while we're thinking about it, debating it and legislating it, because we know how effing essential it is, we must remember to consider everyone. Disability is not a new phenomenon, and sadly, nor is over-looking this population. In an era of unprecedented social awareness, even unintentional obstacles that exclude persons with disabilities from reasonable participation, can feel like discrimination.

I know a well-curated cheese plate and artisanal beer-flight aren't going to fix my MS. But being able to participate in the social world around me is what makes life worth living. So, let’s make a deal - you provide inclusive facilities, and everyone I know will social media the hell out of your business. It’s time to invite everyone to the table and to la toilette. 

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2.20.2017

Treating Secondary Progressive Multiple Sclerosis - Ketones, Biotin and Netflix...Oh, My

On paper, I’ve got relapsing remitting MS. Whatever that means. After a series of unsuccessful treatments, it's looking more and more like secondary progressive MS is starting to take over. Whatever that means. The distinction between the two is up for debate, and that's for people way smarter than me to sort out. I do know that one of the key practical differences between the two classifications is that there are a tonne of approved treatments for RRMS and not much more than hope on the horizon for SPMS. 

After blowing through 5 of the most aggressive disease modifying drugs available, I’ve run out of conventional medical options. But I can’t just sit back and do nothing, so here are the unconventional things I'm doing to deal with my (probably) SPMS as I wait for science to catch up. 

WARNING: this is not advice. This is a blog. Talk to your doctors. You don’t know me (and even if you do), I’m just some rando with a computer. Do your homework. 

Ketones

I love a trendy diet. Avocado toast and kimchi are so last year. Charcoal is the new bone broth and #buttercoffee is my latest obsesh. But regardless of whatever Gwyneth or Dr Oz might be slinging this week, I’ve been using diet and nutrition in earnest to influence my MS and my overall health for years. So, when I first learned about research into the ketogenic diet as treatment for MS and other neurological conditions, my interest was piqued. 

What it is: Some science-types are examining the brain-health potential and neuro-protective capacity of ketones. The brain uses ketones instead of glucose as an energy source when the body is low on carbs. Fun fact: Ketogenic diets have long been used in the treatment of epilepsy with great success. 

How it works: Kind of Atkins’y in that you can achieve ketosis with a high-fat/ample protein/low-carb régime. That doesn’t exactly work for me, because I don’t want to wrap my butter in bacon, and I like bread. So instead, 5 days a week I eat bread (and fruit, veg, fish, meat, popcorn and whatever the hell else I want), and 2 days a week I fast by dialing my caloric intake way back. Then I pee on a stick, and it tells me I’m making ketones, which are hopefully traveling up to my brain and fixing it.

Uhm, is that safe? Relax, mom. My doctors are following me. And I’m maintaining a healthy weight by breaking my weekly fasts with handfuls of triple crème brie. (Note: if you are underweight or have a history of eating disorders, this is not for you)

So…? I feel great on fasting days when I typically have a kefir smoothie, salad and homemade soup, lots of water and even coffee. It can feel like a bit of a detox.

Supplements

Speaking of pee, mine is super fancy. That’s because it’s loaded with supplements. I started seeing a naturopath who recommended the usual mega-doses of vitamin D, but also looked at my blood-work and saw areas that could use some cleaning up that might have nothing to do with MS. I'm looking for things to encourage myelin repair and nerve protection but I'm also interested in prevention because, let's face it, I've been effing with my immune system for years and, turns out, you can get more than one disease at a time. So, iron, B12, EGCG, some weird (but not magic) mushrooms, EFA’s, milk thistle and turmeric are all part of my daily routine.   

Biotin

Biotin is a supplement (B7) that gets its own category because it’s really expensive and you need a prescription and a compounding pharmacy to get it in the mega-doses that have shown encouraging results in improved disability scores for persons with progressive illness. Bonus: I don’t know what my myelin looks like, but I’ve been taking it for 10 weeks and my nails are hard and my hair is shiny. Like a pony. 

Food 

I get full on a mostly whole foods diet but I also believe in chips the pleasure of food and the importance of sharing meals with loved ones, so there isn’t really anything I would forbid myself to eat (except diet soda because, gross). I eat real, unprocessed food as much as possible, and mindful eating allows me to budget calories for wine. Because you’ve gotta detox to retox.

Move

Physio is hard. And let’s face it, hella boring. I’m not running on a trail, wind in my hair, listening to Beyoncé jams. I’m doing tiny, tedious ankle raises, and they are kicking my ass. It can be hard to stay motivated, so I treat physio like it’s my job. Connecting with a therapist who pushes me, helps. When I went from regular aerobic workouts to struggling up a few stairs, I flipped the bird to cardio. But my bossy therapist pushed me to keep trying. Reluctantly, I started with just 2 minutes a day on the elliptical. Now I’m up to 10. I regularly feel like an obvious tool sliding into the gym for a scant 10 minutes, but that’s 5 times what I was doing a month ago. And, when I realize that’s 10 more than a lot of able-bodied normals have done all year, I feel smug and self-satisfied. Research says our brains need this. The cardio, that is. Research is still out on the smugness.

Imagine

Elite athletes have been improving their performance with mental practice for years, and the idea that the same principles could be used to train MS brains to do things like walk faster, makes sense. Research thinks so too. Check it out. Quality mental practice through focused visualization can have the effect of activating areas of the brain that would be engaged if the task were actually being completed. My physiotherapist and I developed a script to coach me through day-dreams of walking quickly and correctly. Sounds boring, right? It is! But that seems to be the only downside, and a way better use of my imagination than freaking out about the impending zombie apocalypse. 

Think

I roll my eyes when people with uncomplicated bodies tell me to think positive as if that’s all I need. I do believe in the power of attitude, but I don’t want to hear it from someone else, and you don’t want to hear it from me. I’ll just say this: it’s not always possible, but when I am able to love what I have, that is when I’m happiest. 

Do (and Don’t)

Self-care for me, incorporates all of the wellness initiatives above, but also includes meaningful work like writing this blog, investing in relationships, filling my days with interesting projects and ample downtime. I treat Netflix and snuggles with the dog like it’s a written prescription.

Rx Netflix and naps. Repeat as necessary.

So, does any of this stuff work? I dunno. know. Stay tuned. In the mean time, what do you do when drugs don’t cut it?

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1.10.2017

Dear Meryl Streep

At the Golden Globes on Sunday night, Meryl Streep called out Trump for publicly mocking a disabled reporter and then high five’d Hollywood for its inclusiveness, identifying her community as “crawling with outsiders and foreigners”. While I was excited to see a major star use such a huge platform to defend the dignity of Mr. Kovaleski and to speak out against the unjust treatment of persons with disabilities, Hollywood is not yet deserving of a pat on the back for total inclusion, especially as it relates to disability representation.

c Thomas Wolf www.foto-tw.de CC BY-SA 3.0 DE

Across multiple media, including television and film, disability is still grossly underrepresented, misrepresented or just plain ignored. In her speech, Streep said “An actor’s only job is to enter the lives of people who are different from us, and let you feel what that feels like”. But in the world of entertainment, disability stories are little more than stereotypes of victims and burdens, heroes or freaks; lazy tropes that are used to make us feel specific emotions. These careless characterizations are not just hurtful, they're dangerous. They inform how we see disabled people in real life and lead us to believe they are low status individuals. 

The real stories of disability are still not being told.

The arts are by nature forward thinking and innovative. Media is one of the most effective vehicles to illicit change in hearts and minds. Hollywood has a real opportunity to influence and normalize how we see disability just as it has for other marginalized groups.

So, thank you Ms. Streep, for shedding a massive light on this issue. You're amazing and I love you, but there's still work to be done. I hope this encourages more conversation about the accurate and authentic inclusion and representation of disability across all media.

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1.01.2017

New Year, New You? 2017 Resolutions (sort of)

Dedicated readers may remember this (slightly modified) address. We're all throwing shade at 2016 and the need for optimism feels even more relevant as we dip a nervous toe into 2017. Or maybe I’m too hungover to come up with anything new. 

It's the first day of a shiny new year. The day when all the mistakes of the previous year are behind us and anything seems possible. By now, at least a month of partying has been put to bed, its memories tucked safely away on Instagram. My liver and credit card are holding hands and whispering “It’s over. We’re safe now”. The fun is over and as we face that icy, unforgiving bitch, January, it's hard not to wonder why a new year is something to celebrate when the fête is finie. A beginning that doesn’t require us to actually start anything new. Good news if you just need a mental boost, to symbolically wipe the slate clean of all the injuries and injustices of 2016, while you write the wrong year on your cheques for the next month. This is your holiday. You don’t have to change. That’s the gift of New Year's. It’s up to you. 


Or not. Whatever.
For others, a new year means waking up January 1st in last night’s makeup and one shoe, rubbing mascara from your eyes while looking in the mirror and making RESOLUTIONS. Because a new year means a new you. One where you can get fit, find love, take that improv class, quit day drinking, stop using LOL and start being nice to the cat. I don't know what you're into. The point is: 

Anything is Possible

Many start the year with big plans only to find themselves failing by February. So, why bother with resolutions? Aren’t they just setting us up for failure? Maybe. But giving voice to our hopes and dreams, saying them out loud, is an important step to realizing them. Even if we never keep our pledges, the act of making them means we take stock, examine what we like and maybe experience a few moments of gratitude, and then reject what it is we don’t like. We get to know ourselves better for having named our convictions; for declaring just who it is we want to be.

In chronic progressive illness the measuring of time is tricky business. By definition we're supposed to, well, progress. Each calendar year is marked by diagnoses, tests, treatment régimes and abilities gradually lost. Ticking time can be a scary contemplation. Resolving to regrow myelin is more futile than resolving to lose those last five pounds. There are certain things over which we simply have no control. 

So this year I’m choosing simple goals. Despite disease and in my never ending pursuit of the best possible life, I will reflect on what it is I love to do, and figure out how I can do more of it. I will think about the people who lift me up and make me laugh, and commit to spending more time with them. I will pay attention to what doesn’t make me feel good and do my best to avoid those things. With hope and confetti still in the air, today at least, I will say fuck fear, because dwelling on the worst case scenario is a waste of my imagination. 

It’s 2017


Embrace unrelenting optimism


Happy New Year, Trippers



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12.15.2016

Holiday Survival Guide From An MS Perspective

Growing up, Christmas in my family was a BFD. It still is. Like an insanely, big deal. My mom still gets up at 5, anxious to tear into presents and eat fruitcake for breakfast. My dad only encourages her by throwing open the sash and bellowing “Merry Christmas”, causing all the dogs within a 1/2 mile radius to lose their shit. Compared to these two, Clark Griswold was a hack. I can hardly be blamed for the sugarplums that dance in my head. It’s in my DNA.

This is what my parents consider a decent sized tree.

Of course, what happens in December starts in November. And everything seems possible in November. I eagerly say yes to it all, seeing no problem in filling my days with concerts, parties, dinners and overall excess; indulging in every tradition on the books, from the first Advent chocolate to the last New Years hangover.

But it’s not all rum and eggnog. As much as I love the holidays, they can overwhelm. Trying to balance the fun with the festive can sometimes fail, especially for an idealist like me who likes things just so. And by just so, I mean perfect. Because December can also mean colds and flus, exhaustion and burnout, calories and credit card debt. 

Keeping my stress in check is imperative to managing my MS, so I’m sharing the ways I try to stay joyful and triumphant during this season. Because sunny November with its fall leaves and sense of can-do is over. It’s mid-December now and it’s freezing-ass cold. The tree sits unwatered next to a mound of unwrapped gifts and a sink full of dishes and somehow I thought I could go to not one but two parties tonight. And, oh yeah, I promised to bring homemade cookies, which I need anyway because I’m hosting six people the next night and oh, there’s that potluck at church the following day. Nerve pain, MS fatigue and wobbly legs be damned.

What the hell was I thinking? Who do I even think I am?

Rather than dropping my phone in the toilet and hiding under the covers for the next ten days (OMG there are still TEN DAYS of this madness), I’ve decided to write a blog post. (Because, guess what? That’s stressing me out too! I mean, I haven’t written anything in forever).

My main concerns during the holidays are really my main concerns in life but in December they’re jacked up on cheap champagne. Among them:

  • I won’t have enough energy to entertain or shop for gifts.
  • Changes in diet will eff up my delicate system. 
  • I’ll catch a cold and send my MS spiralling out of control. 
  • I won’t have the strength to do all the fun things. FOMO. 
  • People who haven’t seen me for awhile will be startled by my progression.
  • I'll look drunk without the benefit of actually being drunk.

Thankfully I have a plan.

Outsourcing

Did you know you can get a turkey on the internet now? Yup. A turkey. I’d like to be the kind of girl who can pull off a turkey dinner. And I am. Sort of. Secret sharing time: after deciding it would be super fun to host said supper, when the time finally came, I didn’t know how I was going to will my body into cooperation. Instead of bailing, I unapologetically ordered a pre-cooked turkey. And why would I apologize? I've cooked 4 turkeys in my entire life and Pusateri's has cooked at least 7 thousand. They definitely know better than me. The goal wasn’t to prove I’m an awesome cook (I’m not). The goal was to eat a skin bowl with some of my besties and play fairy godmother to their kids. Fait accompli.

Drink Through It

I know what you’re thinking. Here she goes telling us how alcohol is the solution. And you would be right. But downing 2:1 water for every cocktail is a life hack. You’re welcome. Because changes in my diet will affect how I’m feeling, I really do try to stick to my exercise and sleep routine. And to avoid the side-eyes of those who will blame my loopy gate on liquors, I like to do most of my drinking sitting down. 

No Touching

If you ask me, there’s simply too much hugging at Christmas. At a time when passing the peace can feel more like passing the plague, a good quality hand sanitizer is my best accessory. And all the extra scrubbing means I also need a great lotion. I love my l’Occitane. This post isn’t sponsored, but I wish it were. 

Online Shopping

Duh, I know. This one is so obvious, I don’t need to plug its benefits, but it’s the reason why anyone who gets a gift from me, ever gets a gift from me. Santa is a MacBook for whom I don’t ever have to put on a bra.

Shoving Shit in a Closet

People are coming over. I’ve known for weeks, and yet here we are shoving shit in a closet. Everything in its place. Sometimes that place is a sky-high fire hazard behind your bed.

Pre-napping

Like pre-drinking, but cheaper. Even if I don’t actually fall asleep, it’s important for me to be totally off my feet for an hour before going out or having anyone over in the evening which is typically a challenging time of day for me.

Knowing when to say Fuck It

There’s good and there’s good enough (this blog post). I accept that I can’t be awesome all the time and maybe not everyone I’ve ever met is going to get a Christmas card from me this year. And, if I finish wrapping a gift only to realize I miscalculated how much paper I’d need, leaving a small exposed square, so be it. I already ruined the wrapping job anyway when I ran out of Scotch tape and decided to use painters tape. (‘So be it’ is the zen way of saying ‘Fuck it’.)

Netflix

It’s important to make time for loved ones and Netflix is no exception. Because Netflix gets you like your family never will. I like to put downtime in the calendar. It helps me recognize it as a priority. 

Just Say No

Sometimes I cancel plans. I don’t like to and I feel guilty, or I don’t. Because I know my presence isn’t going to make or break this shindig. Plus, secret surprise - everybody wants to bail on stuff this time of year. Let yourself off the hook and then don’t be a jerk the next time someone flakes on you. (Unless it’s my birthday 2017. Seriously, I will cut you.)

Just Say Yes

Because often the best nights are the ones where we rally. To get myself out the door when it feels impossible, I always plan a GTFO strategy. I tell myself I’m going for 15 minutes. Most of the time, the energy somehow shows up once I get to the actual event. Just show up.


I have a lot to look forward to as we wrap up this year, and when I look at my calendar and think about all the friends and family I’m going to eat, drink and be merry with, I’m reminded that it doesn’t matter if my base boards are gross. I’m taking my niece to see her first Nutcracker. 

Merry Christmas and Happy Holidays, Trippers. May you drink too much champagne and kiss someone lovely at midnight on NYE.

Love, A.

What are your holiday hacks?


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11.01.2016

What's Wrong with Me? What's Wrong With You!

I’ve just returned from the most fantastic vacay to Spain and France with The Banker and Optimus Prime, my sexy new sidekick and cool, convertible rollator. 

This trip was my first time traveling with Optimus and all three of us were nervous. 

The Banker: “Will it be hard to get in and out of cabs, train stations and airports? Will we be holding up traffic and pissing people off?” 

Optimus: “Will I get thrown around by surly baggage handlers? Will I be damaged in transit, leaving my new BFF stranded and without assistance?” 

Me: “What will people say? How will they treat me differently with my new entourage?” 

These were among our excessively polite Canadian concerns. But in the end, we had no reason to fret. The Banker had practiced packing and converting Optimus and could do it in a slick 90 seconds. OP returned to Canada un-traumatized, with the exception of one inevitable Parisian dog merde encounter. And surprisingly, nobody said anything to me about my obvious accessory. Well, that’s not entirely true. I really did get some compliments on my awesome boots. I’m telling you, they are beautiful boots. 

Optimus Prime is still a bit shy about being photographed. (Not pictured: my bad ass boots)

I was grateful to ease into things with OP without having to respond to any raised eyebrows. We were out and about every day but my differences never came up in casual conversation. This was unexpected because it’s not the same here in ‘polite’ Canada. Sometimes it takes leaving our homes and experiencing a different culture to see things a little more clearly.

On this side of the ocean, I've been fielding questions about my deal ever since I started using a cane a few years ago, and it’s only ramped up since I began using a rollator. What’s wrong with your leg? What did you do? What happened? I get it. You’re not used to seeing people like me; young but using the tools of the old. For whatever reason, we feel we need to comment or ask questions. It’s like our collective discomfort around disability forces us to fill the air, to address the elephant in the room, or on the street for that matter. I end up feeling like I have to reveal personal information, explain myself. I end up feeling like I'm the elephant. 

Why do we think we can make these comments to total strangers? Is it our general feeling of superiority over persons with disabilities? What do we really want to know? Maybe these comments seem benign; people just trying to make conversation. I don’t believe everyone who talks to me is a nosy jerk, but these interactions are not okay. These questions all boil down to "What’s wrong with you." 

“What’s wrong with you?” is not an acceptable ice breaker. 


After two whole weeks of not being put on the spot with questions about my body, things changed as soon as we passed customs at Pearson when an elderly man gestured to my rollator and said, “I’m just glad I don’t need one of those yet.” (At which point OP rolled his eyes and was like, As if I would ever be caught dead with you.) What's frustrating is, I hear stuff like this all the time.

I used to politely answer, putting the comfort of others ahead of my own, and feeling like I had no ownership over my personal health status. I felt like I owed everyone an explanation and even an apology, because it often feels like my clumsy presence is an inconvenience. I would insist that "It’s not that bad", doing my best to make others feel comfortable in the awkward situation they'd unwittingly created. A situation where everyone you encounter first sees you and labels you with something negative, with a defect, and then actually says it out loud. Imagine your most personal struggle in life. Now, imagine that everyone you meet asks you to tell them what that is before they even ask your name. What would you say? 

I don’t want to do that anymore. I've been experimenting with alternate answers and lately when someone would ask "What happened?" I would shrug it off saying "Genetics", but that seemed like a cruel response when I was asked and found my mother standing next to me. So, yesterday, when a curious stranger gave me the up-down before declaring, “You’re too young to be using one of those”, Fantasy-Me boldly said, “You’re too old to be asking rude questions.” But, Reality-Me just didn’t answer. When he didn’t get the hint and kept questioning, I awkwardly walked away, muttering something about croissants. I still felt ill at ease, but I also felt good about having protected my privacy. He didn't deserve this kind of intel, and by my refusal to give it, he could only label me as ‘bitch’ and not ‘MS patient’. Turns out I’m both, but it's up to me to decide if you get to know that.

Later when I obsessed over what I should have said that would have left us both feeling better, it suddenly came to me. The answer that I’ve been searching for is so simple I can hardly believe it's never occurred to me before:

“That’s a little personal; I’d rather not say.” 


I can say it in my nice voice, with a smile, using the manners I was raised with and everyone walks (or rolls) away feeling good. It's so easy.

"I'd rather not say"


In the mean time, maybe that excessively polite reputation we Canadians have is not an accurate stereotype. Maybe we need to take an example from our Euro friends. Drink more wine, eat more cheese, and ask fewer questions.  

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