MS can eff with your identity.

How To Make A Person With MS Feel Useless

Disclaimer: God bless the Florence Nightingales. Don’t let my pissyness and self-absorbed need for autonomy keep you from doing your thing the best way you know how.
 
 
 
 
Last week my well-meaning Uber driver was falling all over himself trying to help me, telling me repeatedly to take my time (like I have any choice), trying to carry my bag, dramatically taking my arm to guide me into the car despite me assuring him I was fine – and, oh yeah – please don’t touch me.
 
Aw, he sounds sweet. You’re a monster.
 
I’m not done. As soon as I’d put my bag down, I turned back to close the car door only to find this do-gooder right up in my grill, reaching around to BUCKLE ME IN. 
 
Like I was 4. 
 
Wow, you must be pretty frail and helpless. Obviously you were on your way to the emergency room. Or was it a hospice centre? Wait, are you dying?
 
 
It’s confusing because I use a rollator.
You should probably talk louder and slower.
 
Maybe this encounter sounds awkward but harmless, nothing more than a nice, if misguided dude trying to help a damsel in distress. But I’m more of a dame than a damsel, and I was hardly in distress. By now, I’m used to heroic displays of assistance and an over-abundance of caution. I tolerate my own discomfort, because what kind of asshole wants to offend someone who’s just trying to help the handicapped? 


Dame Ardra of the Unfuckwithables
(photo cred: Alkan Emin)
 
Ardramatic much? How about if nobody ever helped you again? Would that make you happy? 
 
I’m grateful for the kindness of strangers. But this stranger didn’t believe me when I said I didn’t need help. And that’s not cool. What’s worse was that in my mind I’m this strong, independent, gal-about-town; when I saw myself through his eyes, suddenly I was weak, needy, tragic. 
 
You should probably take the bus.
 
Woah, let’s not get crazy. Besides, it’s not just ride-share drivers who are going out of their way to get some of that good karma. Lately, it feels like the state of my MS has most everyone convinced I can’t do basic things for myself. Sigh. It’s become a fun game for me to drop something in a crowded room, then try to guess who will be the first to leap up and get it. Pick-up Sticks, Disability Edition.
 
How do you still have friends?
 
I honestly don’t know. But recently not one, but two members of my inner posse fell to their four collective knees and attempted to tie my shoelace. While they were fighting over which one of them is closer to Jesus, I sat there feeling like a 4 year old. Again.
 
Okay Snowflake, but isn’t it true that just this week you accidentally turned the stovetop on from leaning on it, melting your Le Creuset salt grinder, almost setting the kitchen on fire? Didn’t you drop your extra-large blueberry smoothie on the not-yet-purple carpet? Word is that after over-extending yourself to the point of exhaustion, you spent 27 minutes on the floor next to your sock drawer, wishing you could call 911, but you couldn’t reach your phone.



For the record, the salt grinder thing happened months ago.

 

 
I don’t know who your sources are, but yeah, that sounds about right. It’s true that having MS means sometimes I legit need help. I know this so bad, I feel like most of my sentences start with “Would you mind…”, and every time I utter a “Sorry but, could you…”, I taste bile. Constantly asking for help with basic tasks is a reminder of just how effed things are. “Can you help me take off my pants in a non-sexy way?” is a real thing I have said.
 
As MS attempts to erode my identity as a badass bitch, doing the things I still can, even if it’s hard for you to watch, is what I need to do to preserve my sense of self-worth. I know my people love me and want to support me. Message received. But I can’t stress enough that my love language is presents – expensive ones – not unnecessary medical-grade assistance. 
 
So you want help, and you don’t want help. What the hell?
 
Imma break it down for you. If you don’t want me to feel useless, just ask if I want help, instead of jumping in and assuming I need it (exceptions include assuming I would like a glass of wine, and assuming I would like another glass of wine). When you do offer to help and I say “No thanks”, bonus points for believing me the first time, even if that means you might have to clean up macerated fruit and flax seeds off the floor. 
 
Are you serious?
 
I’m sorry about the smoothie incident. I really am. But the carpet is fine, and to be honest I never loved it anyway. When I’m repeatedly asked, in that squeaky voice full of doubt, “Are you sure you don’t want me to do this basic task that looks impossible for you…?”, the message is that you’re not convinced I can keep myself alive. I see you looking, holding your breath, waiting for me to fail at whatever it is you’re sure I’m going to die trying to do. 


Back off, Boy Scouts. I got this.
(photo cred: Alkan Emin)
 
While the intentions of my trying-to-be-woke Uber driver were good, just as the intentions of the people who love me are, there comes a point when it’s also important to keep in mind the impact of our actions.  If someone told you you were smelly and stupid every day, you might put on deodorant, maybe pick up a book. When the world repeatedly sends the message that a person is incapable of doing things independently, the risk is that they will start to believe it. 
 
The day may come when I can’t buckle my seatbelt or tie my shoe, and I will be hashtag blessed to have good people who are willing to help me, but please let’s not speed up the process. Let me continue to believe whatever delusions I need to about myself, until I’m ready to accept and adjust to a new normal. 
 
Okay. I hear you. But if I can’t make a big show of unnecessarily holding open automatic doors for people with disabilities, how will they know I’m a good person?
 
 
One thousand good-person points for asking me to help you from time to time. Don’t assume my suffering, my need, is always greater than yours. I mean, obviously I’m not gonna help you move, or kill a spider, but don’t assume you can’t ask me for something; my skill set is vast. I’m here for you, too. Just ask.
 
 
 
 
 
 
 
 
 
PS As soon as I finished writing this, I went to make a smoothie and this happened. Obviously I have no credibility and you should un-follow this blog immediately.
 
At least it wasn’t blueberry.
 
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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 Improve Mobility Aid Stigma With A Hashtag

 
Spolier: It’s not #blessed
 
 
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.

 

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. 
 
 
                                                                                                     Seriously.
 

mobility aid stigma

 
 
 
 
 
 
 

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. 

 

the cool kids

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, 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!

#babeswithmobilityaids

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

How To Recover When MS Steals Your Purpose

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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How to be a hypocrite: MS edition



The morning after a wild night out, I did what any proper party girl would, and sifted through the 4 million photos and selfies I’d taken the night before, deleting any that were blurry, where my hair looked weird, or where my lazy left eye made me look just a little too drunk. I am not a photo-realist. Then, I updated my social media with the most perfect pics of my glam and exciting life, all before brushing my teeth. 


The Banker and I had been to a gala event in the city with about 1900 of Toronto’s coolest and most cultured, art-gallery types. The requested attire was Steampunk, which I nailed, thanks to a crazy hat from my mom’s vintage collection. I knew I looked good and so did everyone else. I got loads of compliments from the beautiful people of the 6ix, of which, for that night, I was one.  

I know this for a fact because I was even paparazzi’d. I was delighted when a media photographer asked if he could shoot me, claiming the hat had caught his eye. This old thing? I immediately obliged, grabbing my cane and striking my sassiest pose after unceremoniously pushing Optimus Prime, my convertible rollator, off to the side and out of sight.

Wait, what?


Under a disco ball and the influence of more than one cucumber martini, for the sake of the photo, I pretended not to know, or need, my rollator. I didn’t think twice about my epic diss to Optimus until the next morning as I reflected back on the evening’s festivities. It went like this: happy memory, happy memory, uh-oh memory. You know, the one that shows up once you’ve sobered up and start scrolling through your mental inventory of the events of the previous night, scanning for shame? Who did you drunk text? Who did you wake up next to? Who did you offend?

Turns out I offended a robot, but that robot has a name and it’s  Optimus Prime. We have a complicated relationship and maybe he’s kinda part of me and so maybe I kinda offended myself. 

WTF are you talking about? Are you still drunk?

Maybe.

Last year I wrote this piece in xojane about beauty and disability. I talked about how, as a society, we have trouble accepting that disability can be normal, and even beautiful, because we don’t ever see it represented that way in media and that has a powerful effect on what we collectively believe. Now, a year later, I had an opportunity to be represented in this very context, in a hip publication – to do the very thing I’ve been rallying for – and I totally fucking blew it.

Let’s be real. I’ve been shoving my rollator out of pictures since he arrived on my doorstep, and before that I was ditching my cane for pics that were private, never intended for a magazine or even a blog. In documenting my own life, I’m not trying to re-write history or deny my experience. We all struggle with how we look to the world. Selfies help us influence how we are perceived by others, but what about how we perceive ourselves?  

I don’t like what I imagine others will think when they see an image of me with a mobility aid. If a picture is worth 1000 words, it feels like almost all of them are negative when it comes to looking at disability. I’ve been brainwashed like everybody else into interpreting mobility aids as symbols of my own brokenness. 

But what if they are symbols of perseverance? Of resilience? Can’t I wear that proudly? 

Can’t I just get over myself?   

I want to contribute to the message that disability can be beautiful, I really do – for society’s sake but also for my own. I’d like to be someone who doesn’t have MS, who doesn’t need mobility aids. But I am. I know the best version of myself doesn’t hide this, but handles it with grace. I know this and yet, I can’t promise I won’t do it again. 










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Do You Hate Feeling Like A Billboard For MS?

I recently received a tweet from @megannenicole suggesting I write about “ways ppl with MS (or chronic cond) can manage their symptoms without being a walking billboard for them.” Which I interpreted to mean, How to cope with something that sucks without becoming a sucky person. 

Spoiler: I suck at this.

I hate how much of me is multiple sclerosis, and I often feel like if I’m not exactly a walking billboard for MS, I’m at the very least, a tripping one.

Worst. Billboard. Ever.

Billboards are in your face eye sores that try to make us buy stuff. They’re so tacky that they’re banned in Vermont because Vermont is a classy place. But what exactly is an MS billboard trying to hawk? Are you the tragic main character of your own life story? Someone to be pitied and held up to the masses as a reminder that their lives could be so much worse? Is MS all you ever talk about? 

DO YOU HAVE A FREAKING MS BLOG? 


My anxiety of becoming this kind of roaming advert is that MS is already too much of my identity. We’re cautioned not to let multiple sclerosis define us (which, btw, feels like code for I’m sick of hearing about your disease drama, can’t we talk about ‘housewives’ already?). We pretend MS is NBD and say things like “I have MS but MS doesn’t have me.” 

Uhm, okay.

Identities are built on things we choose – our music, how we dress, what kind of avocado toast we prefer…as well as what’s imposed upon us – where we were born, how smart we are, what kind of parents we have. I didn’t choose the freckles on my face or the absurd length of my toes, but they’re a part of me.  

Consideration of our brands, if you will, is more important than ever (if you’re unclear about yours, just look at your social media), and a diagnosis of MS can force an identity crisis. I’m regularly asked “What’s wrong with your leg?” While I’m tempted to say I was in a fight with a gang of city raccoons, I almost always confess to having MS. This is inevitably met by weirdness and comments like, “I’m so sorry. That must be terrible.” 

What do you say to the rando who just told you your life sounds like a nightmare? What do you say to yourself? 

It’s tempting to deny the MS part of my identity, and when my illness was still invisible, I did just that. It didn’t feel healthy to reject the part of me that is multiple sclerosis, but it didn’t feel right to embrace it either. 
Disability highlights what we can’t do and encourages us to define ourselves based on our limitations. I can’t drive, so that goes on the list. I can’t run. I can’t walk without assistance. That goes on the list. I can’t even pee without accessories. 

I can’t. I can’t. I can’t. 

I can’t change a tire, but that doesn’t feel like part of my identity. I can’t keep a houseplant alive, and I can’t play the accordion (though I really wish I could). What can I do? Surely that list must be longer. I mean, I can breathe. It’s blurry, but I can see. I can mix a mean martini. I can rock a red lip. 

I can speak French, mes petites têtes de chou

What if identity were independent of physical impairment? What if who I am has more to do with what I do vs how I’m able to do it? And there it is. My lightbulb.

I can’t embrace MS as a part of my identity, but accept it I must. Feeling like I need to hide a part of me, of who I am, is not healthy. If I want peace, if I want there to be less stigma, I can’t be afraid or ashamed to put MS on my list; to claim disability as part of my identity. Not to be swallowed up by it, not to let it diminish my other qualities, but to simply claim it and then continue being my bad-ass self.   


Who am I without MS? For better or for worse, that person doesn’t exist. I can’t be divorced from MS any more than I can be divorced from my freckles or my freaky toes. I mean, maybe my toes are disturbing to look at, but my freckles are adorable. Why? 

Because I say so. 

You say sun damage and I say goddamn angel kisses. I’ll never think of MS as charming, but I realize I choose how to perceive it. Society may have its own pitiable, powerless narrative about chronic illness, but I don’t have to buy that lazy, uninformed description. What the eff does society know anyway?  

None of us are equally abled. Disability is a lot more normal than we give it credit for, and a reality most are eventually faced with in some form or another. None of us gets out of this life alive. 

Cultivating a strong identity and positive sense of self with chronic illness is empowering. It’s what facilitates being treated fairly and equally. It gives us the courage to advocate for better conditions and like, main floor bathrooms in public spaces (cough, Toronto). Perhaps instead of feeling like I’m the Times Square of having MS, I could just have a little ad on kijiji. Perhaps instead of the old I have MS but MS doesn’t have me adage, I will say “I have MS. I am not MS”. 

Or maybe I’ll just move to Vermont.







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So, What Do You Do? Why This Question Sucks.


So, what do you do?’ Innocent, innocuous small talk; an uninspired icebreaker. It’s what we need to know before deciding whether to keep talking or to look for the crab cakes. I get it. We don’t have a lot of time and it’s super important we size each other up with quick and easy labels. But even before I was diagnosed with multiple sclerosis (MS), I hated this question.

The question belongs to a society where value is intrinsically linked to work. And the kind of work we do is linked to how much bacon we bring home. This line of interrogation is so inherently North American that most would be surprised to learn it’s considered très rude in European countries like France where talking about oneself is a sign of faiblesse mentale

Mais pourquoi, you ask? 

The French believe that attempting to establish some kind of social order or trying to (gasp) network at a party is tacky, tedious, gauche. What we do for money often doesn’t reveal anything about who we actually are. Because, here’s the skinny:

Lots of people don’t like their jobs. 


Mondays don’t have a bad rap for no reason, and lots of people don’t wanna be judged by whatever it is they’re doing to get by. And anyway, would you talk to me any differently if I were a corporate CEO or an amusement park carny? 

Almost certainly yes.

Okay, carnies are an extreme example, and you probably shouldn’t ask them too many questions anyway, but for the under-employed, unemployed, or those who are without a ‘real’ job, this question is stressful.  Add to this the growing number of people whose job titles are less conventional and require some explanation. Do we really want to get to the heart of what Chandler Bing does all day?

And then there’s disability. Serious illness often impacts careers. In the midst of changing physical abilities and professional identities, having to confront the question of Who am I if I don’t do whatever it is that I used to do is a circumstance most don’t encounter until retirement, and not a question anyone wants to address at a cocktail party. 

As much as I feel I have a pretty good grip on who I am and what I bring to the table, I’ve not yet figured out how to distil this into a socially acceptable party response. “What do you do?” demands a clear-cut, one or two word answer, not an existential essay about how I’m an aunt, friend, volunteer, traveler, activist; a gossiping, wine-drinking smart aleck, part-time concubine, and well, blogger. 

Oh, you’re a blogger? But, what do you REALLY do?
The fact is, I do a lot of stuff. Interesting stuff. But I don’t always get paid in bacon, and isn’t that what you mean?

No doubt, there are people who love asking and being asked, “So, what do you do?” But not because they want to know more about you. More likely they want to blah blah and impress you with their own exciting career, and I’m pretty sure that’s what Instagram is for.
I’m not saying we should never talk shop at a shindig. I’m saying, let’s all take a deep breath and a big sip of sangria before launching into “What do you do”. How we pay the bills shouldn’t be the first thing we find out about each other. 

Fine. What the hell can we talk about?


In the interview for my friendship, or even for my attention, I’d much rather learn about what you’re reading or Netflixing. What’s your favourite brunch spot? Ask me how I know the host, or what I’m drinking. Ask me what I like to do, or how I’m spending my summer. 

The answer is to know yourself and who cares what other people think. But we still need the short answer that satisfies the nosy room. The question will continue to be asked, and since I can’t actually move to France, the next time I’m confronted with “So, what do you do?”, I will shrug and say “Whatever I want”. Then I’ll go find the Carny and ask him what he’s binge-watching with the Bearded Lady. 







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How To Cope When MS Steals One More Thing You Love

Lest you think this is a silly post about shoes, be advised, I am dead fucking serious.


I inherited my grandmother’s legs. My G was cool enough that we just called her G. She was self-aware enough to know her gams were her best feature. At 80, she was vain enough to insist on wearing a leg-revealing skirt and coat to an outdoor ceremony in the dead of a Montreal winter. I miss my G and her impractical dedication to fashion. 


It was in this reckless spirit that I decided to throw caution to the wind and wear high heels to a Christmas party. What’s the big deal, right? Let me remind you that my last post was about how I spent a week in a wheelchair. No wonder people don’t understand multiple sclerosis. I wish I could tell you my rise to heels was thanks in part to some impressive improvements in my balance, foot drop and leg strength. I don’t know what I was thinking. 

Yes I do. 


I was thinking, this hem line requires a heel. That’s math. And like my G before me I understood that sensible has no place in fashion. 


I know. I’m the worst. The heels thing sounds like so much bullshit. It’s shoes; an accessory. Don’t you have bigger problems?

Don’t you have MS?

Of course. Maybe that’s the cost of finding joy in small things. Sometimes small things can railroad you. But this doesn’t feel like a small thing. For me, heels represent femininity. Not for girls, this is the footwear of women. Practical and impractical, strong and sexy, they are a rite of passage; luxuries that are said to provide a sense of escapism in dire times. 

Are these not DIRE TIMES? 


Not to mention the power of the pump to say what mere words cannot. A stiletto can make an impressive entrance, but what about when you need to pivot on a dime, and storm out of the room with an angry staccato click-clack to reinforce an obviously justifiable rage?

Lumbering out in loafers is just so unsatisfying.

Before last Saturday, I can’t remember the last time I wore beautiful shoes. If I’d known they were going to collect so much dust in my closet I surely would have made more of an event of their last-ish appearance; drank champagne from them, or gone to sleep cradling them in my arms. My descent into flat, boring safety-shoes has been slow and insidious. I reluctantly started using a cane, while gradually sinking into a lower and lower heel. I told myself these modifications were temporary; that they were to get me through a long day. It was a desperate lie that I clung to; a way to stave off the inevitable grief.  


Of course the sum of my presence is greater than that which supports me, but it is not untrue that what we wear impacts how we carry ourselves, and at least in my experience this starts with what’s on my feet (the state of my hair coming in a close second). The addition of a bulky orthotic strapped to my leg and crammed into my boot has necessitated sizing up, so not only am I required to wear low, sexless shoes, my slender Grecian toes have been transformed into clumsy Shrek feet. And I just have to accept this gracefully? What?

Over the past several months I’ve been contemplating shoeicide giving away my shoe collection. If my legs get stronger my old shoes will be out of style and in need of replacement anyway, right? But the truth is I‘m afraid to get rid of them, because maybe they won’t come back. The high heel has become a measure of something more than vanity. It’s about ability, and that’s the real devastation. I’ve lost a few battles to MS already, and I’m pathetically unwilling to wave a flag of defeat on this one.

So on this night, I tentatively donned a pair of Fluevogs. Not outrageously high, but legit heels. I extended my cane so the length would support me on the left and had The Banker on my right. I walked slowly and with concentration, feeling tall and gratified. I didn’t have many steps to take. I didn’t drink as many candy cane martinis as I might have in flats. I spent most of the night perched on a chair, legs crossed and ready to receive compliments, surrounded by some of my most lovely friends who said nothing of my irresponsible choice but only ‘Oh my God, I love your shoes’. 

My G would have been proud.





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