11.10.2018

How To Know Your Worth In The Face Of MS Intolerance



I could list the ways I’ve been left out, treated differently, or whatever gentle words you wanna use to describe being dissed and discriminated against for having MS. 

There was the New York City girls trip that happened in secret, because I might have ‘slowed them down’. There were professional opportunities for which it was assumed I was ‘not well enough’. There was even the chance to be in a docu-drama and reality series that I was forced to forgo once my diagnosis had been disclosed.

But none of these indignities comes close to impacting me like the gut-punch that came with the first time I felt othered for having MS. 

When I was first diagnosed I worried about what would happen to my body, natch, but I never considered people would treat me differently. My obnoxiously confident younger self had no idea I’d just become that girl with MS, and was thus protected from feeling reduced by my disease, at least for a little while. 

The first year AD (after diagnosis), as I struggled to come to terms with my new reality, I found comfort in a network of support. I had good friends who rallied around me (the epic NYC diss still a few years away), my employer was accommodating; and sure, I had a break-up or ten with my on-again, off-again bf, but I didn’t think that had anything to do with MS, break-ups and drama being part of the deal when dating a bartender with a soul patch.

Fast forward a couple of years AD. By now I was rocking the whole invisible illness look. The shock of my dx having worn off, my employer stopped feeling sorry for me and started giving me the side-eye of doubt for taking so many sick days. Things were getting trickier for me at work, but my relationships were better than ever. 

In fact, my Justin and Selena situation with The Bartender was in an on-again cycle, and I was starting to think things were actually getting serious. Except for one thing. I was never invited to his house, where he still lived with his parents. For a long time I didn’t notice this slight. I mean, I wasn’t exactly interested in seeing this guy’s childhood Lego collection, and it made sense for us to hang at my apartment where there was unlimited vodka and no chaperones. 

Then came Easter.

I knew all about The Bartender’s complicated, symbol-heavy, Ukrainian Easter tradition. For weeks leading up to this particular year’s dinner, I’d been not so subtly gunning for an invitation to the main event, under the pretext that I’d wanted to see for myself just how strong you have to make homemade horseradish to invoke the passion of Christ. Of course, I was only pretending to care about Paska and whatever the hell Pysanka is. I needed to know Soul Patch was serious, and that meant meeting his damned parents. But every time I referenced the Resurrection, The Bartender found something else to talk about. 

By Good Friday my weekend was still wide open. I determined he just wasn’t into me, and we needed to break up. This time for good. I was pissed at his cowardly inability to just come out and say what seemed obvious. So, I confronted him. 

I fully expected to hear some excuse about how he wasn’t ready for a commitment and blah, blah, bullshit blah. But when I asked if my invitation had been lost in the mail, he was defensive and evasive. He didn’t want to break up, but I couldn’t come to dinner either. He refused to tell me why.

You already know what was happening here, but I didn’t. When I insisted he tell me what the eff was going on, he confessed that his father didn’t approve of our relationship. Uhm, what?

Growing up I was the kid other people’s parents wanted their kids to hang out with. A straight-A student, mature like a boss, I was a modern day, Catholic school, female Eddie Haskell.  

So, even when The Bartender said, “What’s the one thing you have that nobody else does?” I literally said, “RED HAIR?” 

I was that fucking clueless.

I made him say the words, not because I’d needed to hear them, but because I honestly didn’t know how someone who didn’t know me could possibly disapprove of me. It’s not you; it’s me your MS


(Not exactly a WWJD attitude if I'm remembering Sunday School correctly.)

The Bartender didn’t want to tell me, because he was trying to protect me. And when he spelled it out with those two vile letters – MS –  I was devastated. 

In the months that followed, whenever I would tell this story, I'd feel wounded all over again by the number of people who sympathized with The Bartender’s dad, telling me he was just trying to protect his son. My hurt feelings turned to alarm when I realized this wasn’t an isolated attitude. So many people were comfortable telling me how scary it would be to contemplate a future with me – like I was expected to roll over and accept that I’d become a poison to be avoided at all costs. How could I go through life thinking of myself in this way?

I couldn’t. I wouldn’t.

I know I can’t convince someone else of my worth, but I sure as hell can convince myself. I dug in my heels and refused to believe I was any less of a prize than I’d always been. I refused to accept that because I had MS, I wasn’t just as entitled to my happily-ever-after as my mother had always lead me to believe.

In the end, we didn’t break up. The Bartender held his ground with his father, while his mother sent me secret notes, letting me know I had at least one silent ally. And then, the following year, like the Ukrainian kielbasa that symbolizes God’s favour for some reason (look it up), I was unexpectedly invited to the Easter table.

Halle-freaking-luia

Eventually, The Bartender became The Banker and by the time we were married, his dad had come around. We never talked about the stand-off; they’re not that kind of family, but The Banker’s father danced with me at our wedding, and welcomed me to the family. 

Unexpectedly, one year later, my father-in-law died. I’ll never know what changed his mind about me, but I’ll always be grateful for his blessing on his son’s choice of bride, and for his willingness to open his heart to me.

I know there will always be people who believe it's acceptable for a father to try to prevent his son from being involved with someone with multiple sclerosis – even that it was the right thing to do. And that’s okay. I’m sure there are lots of people who don’t think they could handle having a partner with MS; a partner like me. That doesn’t make me less-than. 

It makes them not enough.  









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10.19.2018

3 Things You Need To Be Happy (With Or Without MS)




Lately I’ve been waking up in a good mood, which is noteworthy because normally I wake up crusty, even a little bitchy. I can hardly be blamed for being unpleasant following a spastic, or painful night. Multiple Sclerosis doesn’t sleep and it doesn’t want me to either.   

But there’s something about October that gets me out of bed without shaking my fist at the sun. More than pumpkin everything, new boots, and autumn leaves, The Banker and I tend to travel in the fall when the weather is manageable and so are the crowds.

This October’s plan to celebrate our anniversary in Paris was paying dividends for weeks. When I couldn’t sleep, I was planning my travel outfits. In anticipation of a visit to Versailles, I was nerding out on the life of Louis XIV. When I was shoving kale into my smoothies I was promising myself out loud that I would soon be consuming my body weight in camembert. I had effectively turned 5 days in the future into a part-time hobby in the present. 

A past trip to Paris: happiness = a cheese trolley and unlimited barrels of wine.

So you can imagine my heartbreak last week when I opened an email informing me that the too-good-to-be-true discount airline with whom we’d booked was in fact, too good to be true. Bankrupt mother-fuckers. With our trip just 16 sleeps away, my new hobby became cancelling reservations, dealing with insurance claims and trying to get at least some of our money back. 

Why are you telling me this terrible tragedy? I clicked this bait to figure out how to be happy with MS and this is literally the saddest thing I’ve ever heard. #thoughtsandprayers

I know. If you’re looking for me I’ll be in all black and a lace veil until my birthday, 94 days from now. The point is, all this sadness got me thinking about how fast I went from happy with anticipation to covering the mirrors in mourning; and I realized, that yes, my would-be trip to Paris is a big fat bummer, but I’ve been consoling myself with the other things I have to look forward to, like the bottle of wine I’m gonna drink tonight, the Halloween party we can now attend, and the sweater I’m gonna buy, because my trip to Paris just got scrapped and I deserve it.  

But wait, if you have MS how can you be happy? I’d rather be dead than have a disability, and you didn’t even get your Make-A-Wish.

Many assume that people with disabilities couldn’t possibly live full lives, that they must be sad all the time. That’s messed up. When I was first diagnosed, I too assumed this life would suck. I mean, that’s what we're lead to believe. And it's true that MS sucks. MS makes my life hella difficult. 


But a difficult life doesn’t have to be a miserable one. 

Just as disability and disease don’t determine a sad and sorry existence, perfect health doesn’t guarantee happiness. According to some unreferenced internet psychology, when it comes to happiness the same strategies apply to everyone, regardless of ability, and have nothing to do with career success, wealth, fame, power or even that thing we’re all told you’re nothing without…your health.

The happiness recipe:

Someone to love 

Society has been known to send the message that people with disabilities are less deserving of love, and even that people with disabilities don’t have the same need or want for love. Maybe you’ve said this to yourself. This is some ableist bullshit. 

You can love your kids, your partner, your parents, the friends that are your family. Pets aren’t people, but if you’re struggling to find love amongst humans, even your cat is a good place to start (but like, maybe get a dog). 

Having someone to Netflix with, someone who’s on your team, who hates the same people you hate, reminds us that we’re not alone, and caring about someone besides our selfish selves can take us out of our own suffering. Love isn’t just a nice to have; it’s a fundamental need to have. 


Something to do 

When I stopped working full-time, the first thing I did was start a list I called Things I Did When I Wasn’t Watching Oprah. I knew I was facing an identity crisis and needed to reinvent myself. What we choose to do with our time reinforces and affirms who we are.

My list might look cool now sassy blogger, world traveler, rollator super-model – but when I was first figuring it out, my list literally had things like, tried a recipe, read a book, used a fire extinguisher. It doesn’t matter what you do, only that whatever you choose to do is just that – your choice; something that matters to you. 

Finding your raison d’être can be extra challenging when you have a chronic illness like Multiple Sclerosis. MS can steal your purpose. MS can rob you of the physical resources needed to do some of the things you love most. It’s not always easy, but the more we can figure out how to make empowered choices, even little ones, the less we feel controlled by external forces. 


Something to look forward to

I don’t know about you, but I spend a lot of time in Anxietyville, contemplating worst case scenarios. And while I still suck at meditation, you don’t have to convince me of how thoughts about the future can influence the present. Fortunately the power of anticipation can also be harnessed for good.

The standard remedy for anxiety is to live in the present, but sometimes the present straight-up sucks, and that’s when mindfulness needs to STFU. Having a stash of future rewards you can call to mind can get you through rough moments and bad days. It doesn’t have to be big stuff like trips to Paris, either. If I’m being real, most of my future-reward daydreams are about clean sheet day, or Miss Vickie's chips. 

MS is tough. I will never tell you to count your blessings, keep a gratitude journal, or smile through your bad days. FTS. I already told you I stopped listening to Oprah. You are entitled to every negative emotion that comes with this shit-show. Grieving the losses that a progressive debilitating disease brings is healthy and necessary for well-being. 

So, I will continue to worry about the future, rage about the present, and lament what this disease has taken from me. But I can't live there. It's exhausting. Most of the time, I'm setting realistic goals, making plans, and chillin’ with my homies; doing the things that keep me going, that remind me – an MS life can be a good life. 

So, who do you love? What are you doing? What are you looking forward to?









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9.26.2018

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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8.27.2018

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:

Cane

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

Rollator 

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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7.24.2018

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. 


Seriously.   







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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