Are You Guilty Of The Wrong Attitude About MS?

I mean, probably. Yeah.

Managing multiple sclerosis means accepting that some days are easier than others, and then not freaking out when you have a bad one, like the one I had last week. I couldn’t pin my extra MS’yness on my usual trifecta of bad-day triggers; it wasn’t due to lack of sleep, I wasn’t fighting an infection, and I didn’t have a hangover. I couldn’t even blame the solar system because Mercury is no longer in retrograde. 

Whatever random MS factor that was messing with me that day meant my walking was a bit stiffer, my legs a bit weaker, my breath a bit shorter. 

No biggie; I’m used to it. I knew I could manage, and was desperate for some end of summer maintenance – one last pedicure before the cold hits and I stop shaving my legs or making any effort really; I’m basically a Never-Nude come winter.  

And so I put my MS’y day out of mind and Uber’d to the closest nail-bar without worrying about the fact that those huge, unnecessarily-high pedicure chairs don’t give a shit about MS’y days. I was on a mission, and as my mom always says the price of beauty is pain. 

Once I got to the spa, I made my slow-walk to the back where the magic happens. I abandoned my rollator because I needed my arms to lift my legs up the step (that was deep enough to be two steps) to the pedicure chair – all while trying not to show my underwear to curious onlookers.

I could feel the eyes of the women in the spa, holding their lattes and their collective breaths, watching as I shimmied, limb by limb, into my seat, wondering if I would fall, or collapse, or I don’t know, spontaneously combust?  

Whenever this kind of voyeurism happens (because it happens a lot), I find myself wanting to say something cutting, something that lets everyone know I see you looking. But of course, I never do. I’m trying hard not to succumb to the stereotype of Bitter Disabled Person. 

As I settled into my seat, I had an uneasy sense of what was about to happen. As if the staring wasn’t enough, I felt a full-on micro-aggression approaching. And sure enough,

each and every one of those bitches cheered. 

Like I was a toddler taking her first steps, instead of a grown woman who just needed her callouses shaved and maybe a toe wax. 

If you’ve only heard the term micro-aggression and are wondering what the actual fuck, here’s the deal: Micro-aggressions are the off-hand comments or actions that cut-down marginalized persons without even trying. They call attention to someone in a way that highlights what makes them different. What makes them Other.

Micro-aggressions are disses disguised as compliments. 

Like how cheering for something that isn’t actually an accomplishment can make the heroine of this story (moi) feel not celebrated, but pitied; maybe even a little out of place, like I don’t belong to this latte-sipping Lululemon crowd. 

I just wanna drink my PSL like every other basic bitch.

Okay, but those “bitches” were cheering for you. Obvi they didn’t wanna kick you out of their club. Can’t you just chill?

For the record, I did chill. I understand that micro-aggressions are not the same as ableism which is way worse (and a topic for another day). Those yoga moms got a pass because I KNOW they didn’t mean to offend. But, these kinds of mini-slags happen all the time. What went down at the nail-bar wasn’t the worst micro-aggression I’ve experienced, only the most recent. 

Although, come to think of it, another day last week, as I was approaching the elevator, some guy in the lobby, eight feet behind me, rushed over like a wannabe super-hero to push the button. 

As I was reaching for it. 

(I use a rollator for balance, so I can see how he might assume my index finger might not work.) Before moving on he gave my back three pats and a sympathetic rub while I willed my head not to explode

Having done his good deed for the day, this grown-up boy-scout got to leave our encounter feeling good about himself. Meanwhile, the normally cool, confident, true heroine of this story (moi) went from minding my own business, day dreaming about sweater-dresses, to brooding about how often the outside world sees me as helpless and pitiable. 

Someone else’s good deed. 

When it comes to chronic illnesses like multiple sclerosis, micro-aggression comes in many forms. It’s that hint of disbelief when someone says But you look so good! It’s telling someone You're Too Young To Be In a Wheelchair. It’s assuming a person with a disability can’t speak for themselves. It’s talking louder or slower, or using a baby voice. It’s pushing a belief that a poor diet is the cause of disease and that kale is the cure. It’s the horrified stranger who asks What happened to you? It’s turning partners into heroes, and patients into inspiration porn. It’s the sad smiles and the slow head-shakes and the looks that say 

I don't know how you haven't killed yourself yet.

Okay, clearly you think I’m a douche who should just stay home, and avoid all interaction with strangers. 

Relax. You’re being dramatic, and I know you mean well. But staying home is a terrible idea. Your home is where your wifi lives and generalizations love anonymity. 

Micro-aggressions are the cost of connecting with people who have lived different lives than our own. We don’t see enough real diversity in media, especially when it comes to sickness, so when we see it IRL, we draw from what we’ve learned from Forrest Gump or Frankenstein and the effed up biases we don’t even know we have.

The truth is, we’re all guilty of micro-aggressions. Most of us don’t go around trying to be dicks, but we all have some degree of implicit bias. We can’t help it. If you don’t believe me, take an online test like the one that revealed I believe dog people are better than cat people, but that cat people are still better than people who take their socks off on planes. 

The best way for us to minimize our weirdness isn’t to avoid difference but to embrace it. Exposure to diversity is what normalizes it. And while I will never want to be exposed to your gross feet, I can make an effort to look past the endless pictures of your stupid cat and consider that maybe you aren’t lonely, or crazy, or a witch.  

What I want all the concerned rando’s I encounter to know is that, it’s not sympathy I’m after. It’s not pats on the back or applause. If you really want to express your concern, then advocate for accessible transit, hire someone with a disability, be fucking outraged that most bars and restaurants in Toronto are still not accessible. Demand better content and more diverse stories from the culture-makers – the kinds of stories that might give us all a healthier, less stereotypical perspective on people who are different from us. 

And if all that’s too much, then just be normal. We all deserve to be here.

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How To Find The Most Bad-Ass Mobility Aids

Shout out to everyone who sent questions about my mobility aids for AMA About Multiple Sclerosis (MS). I received too many submissions about where to find the best canes, walkers, and wheelchairs, oh my, to list them all, so I’m just gonna dive in. 

You know the drill. This isn’t medical advice. Talk to your doctor, your mother, your psychic, your dog. I’m just a blogger with a credit card, a sucker for pretty things. 

That said, I personally did not get great medical advice on this subject. Even after fracturing an elbow, even after splitting open my scalp, I was never encouraged to use mobility aids by my (former) neurologist. While my friends and family were supportive, nobody was exactly championing mobility aids, even when my drunk-walking started to get dangerous. 

I only had bad things to believe about canes, walkers and wheelchairs and was hell-bent on resisting them. The silence of those around me did nothing to hinder my hesitation; my interpretation of the unspoken sub-text being that bringing home a mobility device would be akin to giving up. 

Which is bullshit, of course. But, it would have gone a long way if someone had just said, I’m proud of you for using a walker or That’s the brave choice, the strong decision or Did you lose weight? You look amaaazing.

(Even badasses need reminders of their bad-assery from time to time.) 

But, I get it. Without role-models or roadmaps, we’re all figuring this out as we go, those of us with MS and our squads. It took the help of the sidewalk for me to eventually realize that regardless of how I or others felt about it, it was time for me to pony up for a mobility aid (or two, or three…). 

Okay, so, what kind of mobility aid do you use? 

There are many types of mobility aids out there and this is by no means an exhaustive list. I started using a cane about four years ago, and have since added a rollator (which is a made-up word to describe a walker on wheels), plus a rollator that converts to a transport chair.  Who knew MS would come with so many accessories? 

Okay, poseur, if you can walk with a cane why do you need a transport chair??

First of all, it’s poseuse. I’m a lady. Second, MS is complicated. A lot of people you see in wheelchairs have some mobility, or are able to walk. When things like drop-foot, fatigue, and balance problems join forces to eff things up, temporarily using a wheelchair can mean the difference between going out and living my best life, and sitting in my room with the lights off crying in the dark. Plus, it’s fun to yell “It’s a miracle” when some shade-thrower sees me get up from a chair. 

Here’s the skinny on how I get around:


I live in a hip Toronto loft. Hip is code for so small you can use all your crammed-in furniture for support. When I’m at home I use my cane, the couch, and the walls to get around. The cane is also handy for poking the dog when she’s in the way, which is always. 

Canada has a shoes-off on the inside kind of vibe and I can feel your low-key anxiety when you worry I’m gonna rollator all over your steam-cleaned carpet, so I try to use a stick at someone else’s house. 

I avoid stairs like I avoid vegan cheese, or centipedes, but I can usually wrangle them with a cane if I have to. Except if I’ve had a glass of wine, which is always. 

cause I'm bougie

There are some draw-backs to using a cane. Trekking poles can be a healthier, more balanced way to get around, but trekking poles require both hands, so unless Chanel wants to send me one of their backpacks, I haven’t found this to be a super practical solution. Plus, you can’t safely put a glass of wine in a backpack. 

Canes have always been kinda fancy, so there’s no need to settle for an ugly one (mine is from canescanada.com). Be sure to consider what material yours is made from before investing. Maple is beautiful, but more suited to syrup. I had to replace my starter cane because I dropped it the first day I had it and 85 times a day thereafter, leaving it as sad and scabby as my brain and spinal cord. 

this cane has MS


Outside, in the real world, I use a rollator. The rollator provides way more support and stability than a stick. It helps me balance, and has saved my face from the ground so many times. 

My rollator is from ByAcre, an award-winning Danish company with a focus on style, because hello, Europe. It comes with a bag that easily fits my laptop, or 2-3 bottles of wine, because if it’s not 5 o’clock here, it’s def 5 o’clock in Denmark. The bag is detachable, for when I don’t want my ride to block my outfit, which is always. 

Yeah, I know I used this pic in my last post, but this one's in colour. And, can you blame me? 

Convertible rollator/transport chair 

In 2014 I found myself trapped on a bench in the Marais, full of FOMO and exhaustion, sucking back tears and a sketchy French beer. I’d been using a cane, but needed to stop every block or so, until I just couldn’t. I cried so many tears on that trip and especially on that bench where I remember sobbing, “If I can’t be happy in Paris, I will never be happy again. NEVER”. 

The Banker and I travel a lot, but I didn’t purchase Optimus Prime (by Rollz Motion), my sleek convertible transport chair, for another 2 years after that sucky séjour. Because how the fuck was I supposed to know that sleek convertible transport chairs even existed? Or that that was exactly what I needed? 

Nobody told me. 

When we finally figured it out and invested in said device, the world opened up to us again. Now when we travel, I use OP as a rollator for as long as I feel like walking, and when I need a push, it quickly converts to a transport chair. It seems so obvious now.

Where were you when I needed you?

Ermergerd, your devices are lit, sick, straight fire, Gucci.

By now we’ve established that adding a mobility aid to your life can be empowering, and you don’t have to sacrifice looking cool. If you need a refresher click here. 

But not all mobility aids are equal. I had to sift through a lot of ugly, uninspired old-lady looks before I found the mobility aids that worked for me, that reflected my attitude, my style, my personality. The companies that are still designing for the blue-haired crowd are getting it wrong. Those geriatric bitches are dying their hair pink now, and if my own grandmother was any kind of indication of the sassy senior I hope to eventually be, I will still be a glamorous, fashion-conscious narcissist well into my twilight years. 

Thankfully, there are some manufacturers who know that style matters; who know that it’s easier for consumers to believe that mobility aids are not the enemy if they aren't designed to look like monsters. The industry is slowly waking up to the idea that people with disabilities actually care about their appearance. Like, duh. But we shouldn’t have to rely solely on Scandinavia to provide thoughtful design. We need more options, and we need them to be affordable. 

If you’ve got some sweet gear, please post a pic in the comments and let us know where you found it. And start tagging yourselves in social media with things like #babeswithmobilityaids so we know where to find each other, and to let businesses know there's a demand for cool mobility aids. 

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How To Improve Disability's Image Problem With A Simple Hashtag

photos by Alkin Emin

My mobility aid epiphany didn’t happen overnight; there was no aha moment when I was suddenly okay with multiple sclerosis taking over my body and my ability to walk independently. The transition from relapsing remitting MS (RRMS) to secondary progressive (SPMS), was hard. Is hard. Even now, having reached some degree of acceptance, there are days when I have no chill about how badly I don't wanna be someone who needs a mobility aid.

Accepting mobility aids into my life and baptizing them with cool names was only half the battle. Turns out there’s a whole world of stigma associated with walkers, wheelchairs and canes that I’d never considered back in the days before I’d needed them. It's a stigma that's warped most of us into unconsciously associating mobility aids with some pretty demeaning words. Words like: 

weakness, less-than, burden, victim, other.

I'm not gonna name names, but someone recently told me it was a blessing that their relative hadn’t survived a heart attack because he would have needed a wheelchair, and this guy would never have been able to handle that. 


Though I eventually realized that using mobility aids didn’t mean I was accepting some kind of personal failure, I still couldn’t get past what needing them said about me. I didn’t want people to see me “like that”. I shoved my devices out of photos. I decided I’d never use a cane in our apartment, believing I was somehow tricking The Banker into thinking I remained relatively healthy. I was convinced that looking fall-down drunk was still sexier than looking disabled.

Yeah, I'm that vain.

But The Banker is no idiot. I looked drunk and disabled, and probably a little stupid. After my fair share of freak-outs, there came a point when I knew I needed to get my shit together and wrap my mind around my new identity. 

Feeling un-empowered and less-than is so not my jam. 

It was during this self-indulgent existential crisis that I found myself walking in my 'hood, cane in hand, when I came across a guy about my age. He was wearing a fedora, and somehow didn’t seem like a douchebag. Like me, he was using a cane. I noticed his drop-foot and I know he noticed mine. We gave each other a knowing smirk as we headed in opposite directions. 

I found myself thinking about Fedora for days afterward. Thinking, that guy seemed cool. He looked like someone I could be friends with. And then it struck me. Like, duh. If that guy looks cool with a mobility aid, maybe I look cool too. I realized that the key to accepting my new look (the mobility aid version of myself) was in seeing the people who look like me; in seeing the people who look better than me. 

If I had seen her, would I have been so scared to start using a cane?

It was with this in mind, that a few weeks ago I spent the day playing dress up with photographer extraordinaire Alkan Emin and his team. I’m tired of waiting to see myself represented. I’m tired of society getting it wrong. I’m tired of fighting my own fucked-up associations with mobility aids, and I’m tired of hearing others like me say these fucked-up things about themselves.

Mobility aids are tools, like eye glasses. Only nobody ever tells you to 'just try harder' when you need glasses.

And THEN, just last night, I was heading into the Radiohead concert, Titus Andromedon (my sassy new rollator) in tow, when I was rushed by a young guy who just had to know where my slick set of wheels had come from. He explained that his wife Lisa has MS and that "she's so embarrassed".

Oh, hell no.

Lisa's husband could see that I was one of the cool kids, and God bless him for how much he wanted his wife to feel like a babe while using her own mobility aid. My head was exploding, but I didn't have time to tell this guy how much I get it, because Thom Yorke was waiting for me. So instead, I said, "Let me give you my card", and Lisa's husband was like, "Uh, what? You have an I have MS card?"

Suddenly I was no longer cool. 

Just kidding, guys. Look at me!

Despite what my Instagram might lead you to believe, I still battle these feelings of not fitting-in. There are no fashion magazines, glossy ads, or style icons providing examples of how to rock this look, let alone how to make this look okay. And that is why my social media is littered with shameless selfies declaring #babeswithmobilityaids. Every day, I make the choice to not only believe in this bad-ass version of myself, but to declare it to the world, and to champion others like me to believe in the best versions of themselves. I use #babeswithmobilityaids because I realize that if I want to see those people who look like me, those people who look better than me, I have to put myself out there too.

a thousand empowered words

We need to change the story about disability, for ourselves and for each other. Disability representation is coming, but we can’t wait for media to catch up. Yeah, disability has an image problem, but social media gives us the platform to use gossip for our own good. We can be the biggest PR firm in the world, rebranding mobility aids so that when we see those who use them, we don't see stigma, but strength, 

resilience, independence, perseverance, ownership, pride, ability. 

I want to see all the #babeswithmobilityaids. I want to see Lisa out there living her life and seeing herself the way her husband sees her. 

I want to see you. And I want you to see me. 

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Feeling MS'y: Trapped In A Bad Multiple Sclerosis Day

Get me the hell out of here.

I feel MS’y; which is to say, I feel lousy, useless, beat. Like I’ve been mother-fucking voodooed. Of course, I have multiple sclerosis and it affects many parts of my life every damn day; but, that doesn't mean I feel MS’y every day. Feeling MS’y is when you just can’t. It’s the worst of the worst of what fatigue can do to you, and it just shuts you down. Feeling MS'y is what stops you in your already slow, drunk-walking tracks.

I knew this was gonna be a rough day when I woke up at 4:13 am to pee. Not because I don’t always wake up at 4:13 to pee (and at 1:35 for that matter). No. I knew it was gonna be a rough day when, even after lying down for 5 straight hours, I twisted out of bed at 4:13 to find my legs weak, stiff, and straight-up refusing to point in the same direction at the same time. 

I sighed knowing this was bad news; 4:13 is normally when my stems are their strongest; chilled out from doing nothing all night, with enough pre-bedtime Baclofen still in my system to keep them from seizing up. 

Seizing legs is 8:00 am’s problem. 

At 4:13 I can usually make it to the bathroom sans Blanche (my classy new walking stick). But not last night. 

I lurched my way to the ensuite, like the graceful goddess I am, and realized it wasn’t just my legs that were uncooperative. My whole body was feeling the kind of tired, that is way beyond tired. I was suffering full on MS fatigue. That underwhelming bullshit word that is all we have to sum up what it feels like to have been visited by a pack of Dementors. Surely the Germans must have a better term than “fatigue” for this soul-sucking vibe; but since I'm too wiped to even google what that word might be, I'll just stick to what I've been using for years, and that is to simply say 

I feel MS'y. 

Now I’m trying to go about my day, fighting with myself back and forth about the decision to go or not to go to my 2:30 massage appointment. On the one hand, I only need to rally for a few steps to and from the car. Then again, there’s the physical energy it will take to haul myself onto that skinny massage table, or the emotional energy it will take to have the therapist haul my weak heavy legs up for me. And let's not forget the effort it takes to get undressed and dressed again, and all of this suddenly feels impossible. Sounds pathetic, I know, but 

putting on pants has become a once-a-day on a good day deal. 

The struggle is real. 

Figuring out how best to look after myself when it affects others is always overwhelming, and I can’t even hear myself think right now because I’m breathing through my right ear, which is another thing that creeps up when I’m exhausted, and please tell me someone else with MS experiences this annoying af phenomenon, because my docs just shrug their shoulders like I’m making it up. Obviously if they don’t understand it, it must not be real.

So it’s an MS’y day. Which means listen to my body, but not my emotions. 

My body says stop, but my emotions say freak the fuck out, you’re never getting better. 

My body says clear your sched, but my emotions say you’re gonna let everyone down and if you cancel your massage they’re for sure gonna kick you out of the clinic.

My body says have a nap, but my emotions say have a cocktail, it’ll take the edge off, it’s summer, and you deserve it. 

My body says good point, but who’s gonna make that cocktail? The Banker’s not home for another three hours and you’re too messed-up to walk to the kitchen. 

You’ve won this round, Body.

This is Day 3 of this most recent MS slump, caused by who knows what. Did I over do it on the weekend? Yes. But only by old lady standards. Like, I went to the Farmer’s Market on Saturday. It’s not like I picked my own fruit, nor is Farmer’s Market a code name for a rave. On Sunday, I sat on my bum at a stadium for four hours while the Yankees kicked the home team’s ass. And I only drank water. 

Even if these tiny attempts to live like a normal have a price to pay, it seems excessive that I should still be footing that bill three days later. And despite all this hard living and partying, I’ve been going to bed early, saying my prayers, and eating clean. It’s just that sometimes, MS doesn’t give a fuck. Or, I dunno, maybe Jesus doesn’t like how much I say the F-word. 

So I give in, lay down, and ride it out. I’ve been here before. In the end, I bailed on my basically free massage and laid down quietly in my room for two hours while someone else cleaned my apartment. 

I still haven’t learned to meditate, but I have learned a thing or two about tempering my hysteria when things feel dire. Just because I felt like this today, and yesterday, and the day before yesterday, doesn’t mean I will feel like this tomorrow. This is MS.

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How To Recover When MS Steals Your Purpose

Hint: Find a new purpose

The last audition I ever went on was four years ago, and I sucked. I sucked so bad. I'd taken the subway to this cattle call and exited from the wrong platform, which meant loads of extra steps to get to where I was going. In the heat of August. In heels. Once upon a time, I was a singer.  

Though I’d been living with multiple sclerosis for several years, this final attempt to get a gig took place during the last of my pre-mobility aid days — that blurry time when I mostly looked fine, but one step too many and I'd turn into a wobbly, hot mess. 

No alcohol necessary. 

MS must have turned me into a slow learner too, because I was always shocked and never prepared for these debilitating bouts of weakness and instability. As a non-driving, transit-taking city-girl, I’d regularly find myself out and about, suddenly slow and barely able to carry myself. Cars would honk as I dragged my heavy, disobedient body across the street, wondering how nobody could see how desperately I needed to sit. More than once, I'd called The Banker to come get me with the car when I was crashed out on a sidewalk, defeated and humiliated, 100 impossible steps from home. 

So it was that I’d arrived at this audition, stunned again by how fast those extra steps had fucked up my legs, and completely closeted about what was going on with me. 

In the singing world, multiple sclerosis was my sick little secret. 

Somehow I managed to get through the audition. Somehow the panel managed to refrain from asking "So, do you need an ambulance, or like, are you just drunk?". The thing we all had in common was the thought, “What the fuck are you doing here? Is this a joke? I thought you were a singer.”

At the time, I didn’t know that that last audition would be my last audition; but as I process things now, it stands out as the turning point from which that part of my identity officially started to die. More likely the dying had started long before, but like any proper break-up, it’s impossible to pinpoint the exact moment when things start to go to shit.

Doors don't always slam shut. Sometimes they close so softly, it isn't until long after that you realize they're dead-bolted behind you.

It’s been a full year since I last sang in public. Since I last sang at all. Singing stopped bringing me joy when it got to be too much to get through a coaching. After working so hard for so long, my heartache was real when, breathless and weary, I realized I could no longer stand and sing at the same time, and the sound I was producing was thin and tired. What had once been a tonic had turned into a toxin. And not the good kind, like opium or botox; more like some sketchy mushroom that a forest troll talks you into.

What a tragic story, right? The thing is, I don’t really dwell on this; it's not in my nature. My opera singer dreams had been modified, tempered by the reality of MS, years before this last failed foray. I’d accepted long ago that I was never going to have a ‘real’ singing career, and was content to study my craft and do the odd professional, mostly choral, gig. 

Because MS can make you settle. 

One minute you’re resentful, raging against what's being taken from you; and the next, you’re consumed with gratitude to cling to any version of what was being threatened. It didn’t take me long to feel less like I was settling and more like I was lucky to do this amazing thing at all. 

I had a world-class teacher who had invested in me like I was a star, though he knew I never would be. I was so happy to just be in the studio, it didn’t really matter if I never performed (though actually I did have a handful of stage-door days). I was only in competition with myself, in pursuit of my own personal best. Singing was a kind of therapy for me. Probably because singing is a lot like screaming, but with less swearing.

Looking back, I can see that as music was being quietly ushered out of my life, writing was nudging its way to centre stage. This happened organically, without conscious intent; without my even noticing. Writing was something I never could have predicted would be just as rewarding as singing, and in some ways more so. Where I always struggled to figure out what was unique about my voice in a sea of sopranos, as a writer, I do know my voice. I know exactly what I want to say. Mostly it's the F-word, and we've already clarified that you can't really say that in a recital. 

I definitely heard this as "She who has a wine to live for." I hear what I want.

I still think about singing from time to time. Every now and then I’ll hear a song or see a pic from my not-too-distant past (thanks, Facebook memories) and take a second to wonder about all that has changed; to wonder at how many versions of ourselves we get to experience in one lifetime. I think what I actually need, what any of us needs to keep going, is purpose. And right now, that purpose is writing. So, thanks for reading, Trippers.

Oh, and just in case you wanna creep a version of the old me, here's a peak at a song I recorded in another life. It's a love letter to The Banker. It's about, well...you'll figure it out.

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