11 Super Dumb Myths About MS Explained

I've been writing too many serious things lately. It’s time for an insipid list. Are you listening Buzzfeed?

Myth #1 Spa treatments will cure MS

While it’s true you cannot spell ‘pedicure’ without ‘cure’, a fresh coat of polish and some attention to your cuticles is not, in fact, a cure for drop foot. I know this for sure because I tried to claim my last spa visit and my insurance company was really crusty about it.   

Myth #2 You cannot get more than one disease at a time

I was convinced this was a thing. I stopped flossing, thought about taking up smoking and was playing fast and loose with my breast exams. Then I got dx’d with a mild arrhythmia called Wolff Parkinson White. All I heard was Parkinsons and I lost my fucking mind until it was explained that they’re not really the same thing. Too late. My life had flashed before my eyes and now I wear my seatbelt, take my vitamins and think about my own mortality ALL THE DAMN TIME. 

Myth #3 You have to fight to beat MS

Fight whom? Myself? My brain? Should I punch myself in the spine? I know, I’ll poison my liver with booze. That’ll teach my no good body to mess with me. 

Homer gets it.

Myth #4 There’s a cure! 

Wait, what? Tell me more! How have I have not heard of this?

Because there is no cure. There are some treatments that are effective for some people. I swear to you, I know all about them. Please stop telling me about some thing you sorta remember in Russia or maybe it was Lithuania but in any case it was just the headline of an article you saw on the internet. I don’t have the energy to explain it to you again. I promise you that when there is a cure it is utterly impossible that I will first hear about it in a link you sent me on Facebook. Stick to updating me on the demise of Brangelina or the latest celebrity death. That is the only breaking news I trust you to deliver. 

Myth #5 Getting liquored and engaging in séances with your besties will give you MS

Every super hero has an origin story and as the heroine of my own I'd convinced myself that some cheap red wine and a sketchy book of spells gave me some bad karma when I started experiencing my first symptoms one week after Halloween. True story. I believed in the power of my own shoddy witchcraft for at least three years. Turns out this is scientifically impossible. Thanks science! Also the hair loss spell that was put on that boyfriend-stealing bitch? That didn’t work either. She knows who she is. 

Myth #6 MS is contagious

I wish. Then I could give it to my enemies (see above). Okay, I’m obviously kidding. No, I’m not. 

Myth #7 Pretty people don’t get diseases

Someone actually said this to me. Turns out pretty people can also get new friends.

Myth #8 Everything happens for a reason

Oh really? Tell me more about the holocaust.

Myth #9 It all works out in the end. God doesn’t give us more than we can handle

See #8

Myth #10 People with MS are descended from Vikings

This one might be true and that’s good enough for me to claim to everyone I know that it definitely is true. It’s the only cool thing about having MS. Or about having super pasty skin for that matter. Our pets were dragons! 

Myth #11 MS is a journey

Journey was a meh band that your parents listened to. Journey is a PS3 game for nerds. Journey is an affordable midsize crossover. MS is a vile disease. Calling MS a journey is an insult to the ’70’s, dorks and sensible family vehicles everywhere. Don’t stop believing MS sucks.

The internet is full of bad information about MS. What are some of your favourite misconceptions? Anything you wanna clear up? Please share in the comments.

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Friends Don't Let Friends Buy Ugly Mobility Devices

I never thought I could get excited about a mobility aid. Obvi. I love shopping, but of all the packages I’ve welcomed into my life, this isn’t one I ever thought I’d sign for.

Recently, I’ve had to accept that I need a little help staying vertical. A cane isn’t cutting it so I’ve been experimenting with rollators (formerly known as walkers). But on long days when my legs straight up quit, a rollator just isn't enough to keep me on the dance floor (okay, the regular floor). Luckily, we live in The Future where rollators exist that, with a few slick moves, convert to pushable chairs for just such occasions — like real-life Transformers but with less fire power. What? This blew my mind. 

Until I actually saw them.

Because BMW doesn’t make them yet (and neither does Hasbro), most are not designed with style in mind. After much research, I narrowed my choices to two. Frankly, there aren’t many on the market.

Option A

Pros: Reasonably Priced

Cons: An electric-purple, clunky assortment of cables complete with side bags, front bags, rear bags (wtf does anyone put in all those bags?) plus an unnecessarily wide seat belt and a Super Big Gulp sized cupholder. Had it come to this? What would attachment to this device say about me? Were all those bags just a sneaky stepping stone on the road to becoming a full-fledged Bag Lady? Despite its accessories, and its overwhelming purpleness, it looked so medical. I hated it. If this were indeed a Transformer, it would surely be a Decepticon.

Option B

Pros: Sleek, streamlined, European (natch). Comfortable and easy to maneuver. Available in colours like ice blue and cloud grey, for the born after the 1930s crowd. Almost cool. I mean, it’s still a walker, but it was a lot closer to Optimus Prime than Option A.

Cons: It costs all the money

Ignoring some functionality concerns and the obvious style ones, I decided to suck it up and go with the morally sketchy Decepticon. The Banker looked at me pityingly as I held back tears and told myself I was gonna need some killer outfits to distract from its heinousness. I was desperate to get the purchase over with but the hunk of aubergine anxiety wouldn’t fit in our car. (NB: Calling it ‘aubergine’ didn't make it suck less. I tried). We left frustrated and empty-handed.

That night, I sent my ginger bestie a pic of the twisted piece of purple scrap metal and shitty nylon bags. My phone rang immediately. “Absolutely not. You cannot take that to Barcelona.” (I’m going to Barcelona.) The next words out of GB’s mouth were, “What happened to the sexy one? Why aren’t you getting that one?” Sexy walker; her words, not mine.

My ginger bestie and I have been informing each other’s shopping decisions since 1998. Our post-work retreats to unwind and gossip about that B who was always trying to steal our boyfriends were a critical part of our early friendship. A sideways look, and we knew we were headed to the mall as soon as 5 o’clock hit. And not just any mall. We happily drove the extra 40 minutes to get to the good mall. The history of our sisterhood is marked by our most memorable scores. The lavender python boots of Amsterdam. The lemon yellow silk skirt. She even helped me buy my four poster bed, which I later gifted to her after I got married.

We are experts on rationalizing each other’s extravagances; easily coming up with a quick 10 reasons to justify a splurge. We’ve cultivated a legit fear of the outfit that got away. Most recently, "You don’t have red patent leather ankle boots. That is a glaring hole in your fall wardrobe," helped push the plastic to the register.

If this sounds materialistic and irresponsible, it’s because it totally is. Fortunately, we’ve matured some since the early aughts and are less likely to haphazardly wreck our credit scores. But these are life skills that die hard. After years of friendship, she was qualified and well within her job description as bestie to question the Decepticon purchase so ardently.

I also consulted with my barrister bestie (because every modern girl needs a good lawyer). My BB is decidedly more practical and way less likely to encourage a wallet apocalypse. Even she said, “You HAVE TO buy the nice one. Who CARES about the money? What if you have an event?”

Oh my God. Events. I hadn’t thought of that. I imagined myself struggling with the purple beast in a chic restaurant. Suddenly it seemed ludicrous to even consider taking a saddle-bagged Decepticon anywhere. This thing is going to be an extension of me, in a way. An expression of me. And everyone knows Decepticons are notorious douchebags.

It’s hard needing a mobility aid. Really hard. There's so much beyond my control that I must sacrifice because of MS, but there is no need for me to give up style. I accept that using a mobility device adds a certain je ne sais quoi to my image. But I don't accept that we can't do better than this. So how about designing a few more of these things with the cool kids in mind? Shallow or not, our stuff helps us establish our identities and Option A was crushing my soul.

In the end, our tribe sometimes knows us better than we know ourselves, especially when we get overwhelmed with change. Ultimately, Optimus Prime maintains several functional advantages in addition to the superficial style ones. (For one, it fits in the damn car). I know how fortunate I am to be able to find the scrilla for this purchase, and the fact that these items should be more affordable for everyone is an angry argument for another day. The sexy rollator has been ordered and truth be told, I’m actually kind of excited about it.

ooh, nice shoes

Geriatric purple would have been a disaster with my red leather ankle boots.

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What I'm Reading

A couple of weeks ago I received a package in the mail. Fellow writer and Tripper Jennifer Evans, had sent me a collection of poems she had compiled, penned by MS’ers about their experiences, called Touching MS, Poetic Expressions.

My first thought was delight; how nice to have received such a thoughtful gift from a stranger.

My second thought was Oh God, amateur disease-poetry. This is going to be terrible.

I poured myself a big glass of wine and decided to give it a peek, because these are my people. To my surprise I ended up reading the whole collection in one sitting, cover to cover. It’s not all Tennyson but some of what I read rang so true to my own experience that I easily could have signed my name to it. (I mean, not enough swearing to convince you I’d actually written any of it, but that is why I don’t write poetry, bitches). 

Don’t be fooled by the flowery cover. There’s nothing sugar-coated about what’s inside. At times hopeful and at times raw, it will remind you that you are not alone.

Like this one from Marie Kane:

Marie Kane

Charcoal fire lights our patio bricks. You turn the steak,
     reveal crosshatch pattern of the grill.
I sit above you on the porch; we are silent as we often are.
     Perhaps you regret serving steak, which you have to cook
and slice, and regret having to clean up this dinner
     with its vegetables and rice, and even rue the decision

to marry me now that I am crippled, not able to do
     as I used to - 
anything, really - and you are so quiet I want to
     make as much
uproar as I can, rail against you for being so
     confoundingly stoic,
You finish grilling, climb the porch stairs, kiss my shoulder,
     and enter the kitchen. I follow, my cane catching the metal
strip at the entrance. I grab the door jamb to keep
     from falling.

“Are you OK?” you ask. There is nothing in the world that
     could make me tell you the truth. You      remove the red 
cowhide grill gloves, fill the white plate with asparagus 
     and rice,
thinly slice the London broil, reserve the most tender for me,
     and with the same steady hands, help me into my chair,
guide it to the most suitable position at the table, present
     my plate,

and light the candles. We eat by their faint glow, and 
     my most
secret self responds to your generosity with embarrassed
     compliments about the food. Later, I watch you sleep,
scent of the grill in your hair, while your hands - 
     unsinged, wide, loose on my breast - 
claim me this night as your own.

Originally published on multiplesclerosisnewstoday

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Picking Myself Up off the floor (Chapter 794)

I haven’t written much lately because I wasn’t sure I had anything nice to say and we all know the internet is no place for negativity. The thing is, I’m going through a bit of a thing. A crisis maybe, and a graduation of sorts, to a new level of disability. After 15 years it’s time for me to start using a walker on the regular. And somehow there’s still part of me that is utterly stunned by this. Fifteen years with an MS diagnosis and though it feels like forever, this has been a relatively quick trip to Walkerton (even as I realize there are sadly, many who’ve reached this town even faster). 

I’ve only just gotten used to using a cane and it’s time for a walker. Well, a rollator is what we’re supposed to call them now. And if the cane has taught me anything, it’s that there's no going back. At least with MS, these things tend to be permanent, or they stick around until a new level of suck is reached and a more advanced assistive device is required. It's that whole graduation thing but with less pomp and more circumstance. For there will be no keg party, no drunken make-outs and no prom dress at this grad. My only diploma is a bump in my EDSS score and my award, a clunky mobility aid. Nobody wants to stay up all night celebrating this milestone. Although drinking until I barf does seem rather tempting right about now. 

For several weeks as I waited for Rolly’s arrival (thanks ridiculously slow health care system for giving me ample time to emotionally process all this), I was able to see the bright side. I told myself a Rollator will afford me more freedom. Greater endurance. A cool basket to put stuff in. 

No big deal.

But then a week ago, in the middle of all this healthy acceptance and well adjusted adjusting, something switched. I found myself assigning all kinds of meaning to this situation, leading me to freak out over a cheese plate and a pitcher of sangria on the balcony. The sudden change in my perception was so unexpected, I knew it had to be poisonous. But like the boozy fruit juice in front of me, I couldn’t stop myself from picking it up and taking a big sip of hysteria. Call it a walker or a rollator or whatever you want. Turns out needing this level of assistance just to get around is totally a BFD.

Like always, The Banker did his best to calm me down but I was having none of it. He countered each of my anxieties with hopeful reassurances and hunks of baguette smeared with brie. He told me for the thousandth time we are in this together and insisted his life is at least a million billion times better with any version of me in it. At least. He urged me to try the pâté. I remained unconvinced. He poured more sangria and that helped, but I can be very convincing and finally I managed to make both of us cry. Somehow we finished our drinks and all the charcuterie and by morning I could breathe again. I’d purged all the grief from my system. I was ready to accept this breakup with independent walking and move on.

Or so I'd thought. We all know the first breakup never takes and the next night I found myself staring at the ceiling at 3am thinking about what comes next. Trying to hold it together. Imagining the worst and not comprehending how I will possibly cope. Because the very, very worst part of all this is What comes next? 

It’s always what comes next. 

The next night I lay awake doing some random made-up math on how much time I think I have left. This was tiring because I'm not good at math, but not tiring enough to put me to sleep so I got up to hang with the dog. Not surprisingly, she didn’t have any sage advice. She slept next to me, not judging, but occasionally waking to engage in some questionable self grooming. Ugh. I mean, clearly, she has her own problems.

Then after three sleepless nights I decided not to take any chances and chased a handful of zopiclone with a generous glass of red wine. Guys, this is not a substitute for medical advice, okay? This is a blog.

I slept better (sort of), but was still one more teary meltdown away from turning the corner. The one where I ugly cry and insist I’m not strong enough to deal with this. The one where I panic that I’m running out of time, and sob about the unfairness of it all, convinced my best days are behind me. The one where I conclude I am not okay. Because NONE OF THIS IS OKAY.

(deep breath)

So. Much. Drama. Barf me to death. So I’m freaking out. Again. Sorry, everyone that loves me or has to be around me. I know this gets boring. But does anyone take this in stride? (No pun intended) It’s not spilled milk. The reality of MS is that not everything gets lost at diagnosis and grieved over all at once. It’s like getting a new disease over and over again.

I thought I was cool about this and then it arrived and I started to hyperventilate. The dog is in the picture to distract me from how fucked all of this is.

Though I’m still not really sleeping, I am starting to see my way out. Not because my body is stronger or my disease is slowing down. But because I can’t stay in this darkness for too long. And something I read last night seemed to click. 


(thanks Andy, sorry for all the swearing)

We’ve all heard this before. Don’t hate what you don’t have. Love what you have. Somehow this is different from Be Grateful For What You Have, which sounds more like a bossy threat. Like, you’d better appreciate what you have before it gets snatched away - and isn’t that just the epitome of MS? Where any ability you have can be taken in a heartbeat? It can be challenging to be grateful for what seems like it’s only on loan when you know there's a creepy repo man lurking around the corner just waiting to make his move. 

Love what you have feels different. If you love something you don’t just acknowledge it with a polite thank you. You have to take care of it. You have to be kind to it. You have to do something - it’s not passive. Love is a verb. Could I give my MS a hug instead of a side eye loaded with vitriol? Love is patient, love is kind…that’s from the Bible, bitches, so you know it’s good. If I can find love for what my legs can do for me today, can I be patient and kind to them? 

As I struggled to get to sleep last night I started making a mental Love What I Have list. I tried really hard to not take anything for granted, to not make this a ‘love what I have left’ list. I thought about The Banker and the dog and the tremendous comfort their love for me creates; the big obvious haves that go to the top of my list. Someday I will certainly lose my pup. She’s 11 years old. Suddenly I realize that knowing this doesn’t make me love her less. I don’t spend the time I have with her consumed with anxiety about what life will be like without her. I will deal with that later. That is a pain and a loss for Future Me to deal with.

Encouraged, I kept going with this list. I wanted to identify more than the things outside of me. I wanted to find love for the things that are maybe not the same as they once were. I wanted to find the love for the things MS is trying to steal from me. 

I decide to love that I got dressed and into bed by myself. I decide I love that I am independent. I resist the urge to frame this as 'still' independent because it implies impermanence, it implies 'for now'. I love that I am independent. Period. That used to mean Girl Power but now it means I can walk to the bathroom by myself. Make coffee. Put my socks on. It’s an effort but I somehow manage to feel this without bitterness. I am truly thankful I can walk at all. And as tempted as I am to dwell on how desperately I want to walk forever - thinking about it takes me away from what I have today and puts me in an unknown, scary, future place that seems dark and impossible. It’s so nauseatingly throw up in my mouth cliché but I don’t have the future, I only have today.  Sometimes I think I’m selling myself a bunch of Pollyanna bullshit but the only thing more exhausting than convincing myself of some Pollyanna bullshit is spiralling into despair. It's better to decide I in fact have enough green grass right now. It’s time to pick myself up off the floor. 

I don’t want to fight with my legs. I don’t want to resent them or feel frustrated. I want to love them. I want to slather them in lavender scented l’Occitane and whisper Thank you. I know you’re trying. It’s not your fault. You deserve beautiful shoes and regular pedicures.

Remember what I said about the very, very worst part of this? That is Future Me’s problem.

Maybe this graduation does deserve a party. After all, we mark transitions with traditions. So. Who wants to have a glass of Pommery?


Stupid Sh*t People Say

One day, when I was in high school, I was riding the city bus when a friend I hadn’t seen since grade school got on. We were both 15 and to my surprise, she was eight months pregnant. When I saw her I gasped, “Michelle! How did this happen?” She rolled her eyes and muttered something about the ignorance of virgins and made her way to the back of the bus. 

Even at 15 I had enough going on to regret the words I’d said as soon as they’d left my big stupid mouth. Years later, I still cringe when I think about it. We all say bone-headed things and I've found my own foot in my mouth many times since then. I try to remember this when someone barfs out something mind boggling to me and I tell myself they agonize over their most idiotic declarations as much as I distress over mine.

As someone with an often misunderstood illness, I hear stupid shit with astounding regularity. I’ve learned not to take most of it personally, but sometimes these off the cuff, seemingly innocuous comments can be reflections of questionable beliefs that are deeply imbedded in our society. 

As luck would have it, I've been on the receiving end of some of these questionable comments over the last couple of days. In response, I've been using my well trained side-eye a little more than usual and so rather than risk pulling a muscle in my face, I've decided to call a few things out here. 

My first raised eyebrow was directed towards some classic Dime-Store Philosophy, when a casual acquaintance lamented to me that ‘everything happens for a reason.’

I didn’t bother mentioning that I don’t believe my disease was sent to me for the greater good of teaching me some mystical lesson. I simply glanced at my cane and shrugged, saying I don’t really subscribe to that way of thinking. My philosopher friend then doubled down and said if not for some reason, then karma. Oh? 

Please tell me more about the ancient spiritual principles of Buddhism (you WASPy hipster.)

Since I am a lady and sarcasm is unbecoming, what I actually said was an exceedingly polite and sincere “Karma? Interesting. I wonder what the fuck I did?” My politeness notwithstanding, things wrapped up pretty quickly after that. I get it that lots of people think this way. I may have even believed some of these easy ideologies myself before gaining a little life experience. To each his own. But here’s a bit of free sensitivity training: Don’t say this shit out loud. I mean, know the room. There is tragedy in this world. Assigning a reason to someone else’s suffering is just, ew.

Seriously. Just don't.

My adventures with verbal faux pas continued into the next day when The Banker and I headed to the baseball game. The good people at The Roger’s Centre have a service where those requiring assistance can be met at the gate with a wheelchair and brought to their seats. I decided to take advantage of this in the interest of saving myself from a long walk, stairs, and crowds that can be hostile to my slow gait, and blind to my inability to defend myself against the shoving and jostling that happens in a moving throng of people. These employees are well trained and do a great job. It’s a lovely service and without it I might otherwise have stayed home. 

When we arrived at our section, we were met by another employee whose job it was to direct people to their seats. This attendant did not seem to have received quite the same kind of training as the disability services team. When she saw me rolling up in a wheelchair, she called out loudly:

“Well, aren’t you lucky!” 

Her high pitched, sing-song voice was something usually reserved for speaking to people under the age of seven but it's a phenomenon that sometimes happens to adults when being spoken to while seated. Strikes one and two and the game hadn’t even started.

The words were ringing in my ears and this wasn’t even the first time I’d heard something like this. Here’s why I’m throwing shade at it. What she said was so obviously wrong, but it’s not what you’re thinking. Okay. It totally is what you’re thinking. In our lazy as hell society, why would I want to walk when someone else can do it for me? I mean, who wouldn't want that, right? (I heard it. Turns out I'm not much of a lady.)

It’s also this. When someone says ‘Aren’t you lucky?’, it implies that I’m the recipient of some over and above special treatment. Like I’ve won a damn prize. While everyone else at the game deserves to be there, I’m only lucky enough to be there because of the benevolence and generosity of someone else. Yes, it is a great service and I’m happy it exists but it should not be considered a charity and to tell me I ought to feel lucky to have what amounts to the same access as everyone else is diminishing and insulting and not at all what I’m sure the stadium intended. It’s a service that is provided because it's the right thing to do. It's the ethical way to run a business. I don’t feel lucky that I’m invited to participate in something like a baseball game. I feel like a valued and equal member of society.

I know there are many places in the world where people with disabilities are not treated with the same regard I was afforded at the Jays’ game. Hell, there are many places in Toronto where that is the case. I appreciate that I'm fortunate to live in a country where progress is being made in terms of how we treat our most vulnerable but it’s comments like ‘aren’t you lucky’ that are indicative of an endemic, misguided attitude towards disability. One that says, You don’t belong here quite as much as the rest of us. And furthermore, We don’t have to include you, but if we do you’d better recognize how magnanimous and charitable we are. I don’t want to sound like some angry cane wagger but this attitude needs to change. Equal access isn't a benevolent kindness. Under the Ontario Human Rights Code, it's the law, bitches.

Okay, true confessions time. What’s the stupidest thing someone has said to you? You can only answer if you're willing to cough up something boneheaded you’ve said. Guys, our heads are made of bone. It’s bound to happen so get it off your chest already.

In the mean time, I’m gonna pour myself a glass of wine and think about the time I complained to a colleague about the incompetence of the guest lecturer we were forced to endure. A guest lecturer who turned out to be my colleague’s mother. Natch.


Disability and Beauty

Dear Trippers,

Tomorrow I start my second round of Lemtrada and I'll tell you all about it in a couple of weeks.

In the meantime, here's a piece I wrote for xojane about diversity. Special thanks to Darce and Celia. Seeing your beauty helps me see mine.


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To Be, Or Not to Be a Walking Billboard for Multiple Sclerosis

In response to But, You Look So Good! I 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 wretched and awful without actually becoming something wretched and awful. I was immediately interested because, full disclosure, I’m pretty sure I suck at this and I’m hoping to discover the answer. I hate how much of me is MS and I often feel like if I’m not exactly a walking billboard, I’m at the very least, a tripping one.

Billboards are in your face eye sores that try desperately to make us buy stuff. They’re so tacky that they’re banned in Vermont because Vermont is a classy and elegant 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 DAMN BLOG? My anxiety of becoming this kind of roaming advert is that MS is already too much of my identity. We are cautioned ‘Don’t let this define you’ (as if this is the narrative any sane person wants to claim). We pretend it doesn’t and respond with things like "I have MS but MS doesn’t have me." All the while thinking, Pfft. I wish.

Identity is a precious part of the human experience. Uniquely ours to discover and cultivate, we alone own our identities. They determine what we do and why we do it, what we stand for and who we stand with. We live in a time of unprecedented consideration of our selfness. If you are unclear about yours, just look at your social media. Identities are built on things we choose - our music, how we dress, what we read and who our friends are. In addition to what we so carefully cultivate, there are parts to our identities that are imposed upon us, like where we were born or how smart we are. The freckles on my face and the absurd length of my toes are characteristics I did not choose but are a part of me and superficial though they may seem, like my love for croissants and my loathe of all things zombie, they inform the idea I have of me.  

Knowing oneself is crucial to wellbeing. A diagnosis of MS can be a life changing event precipitating an identity crisis about who we are physically, emotionally, professionally and personally. A crisis amplified by the perception of others. I’m regularly asked "What’s wrong with your leg?" While I’m tempted to talk about how I was in a street fight with a gang of city raccoons, I almost always stammer uncomfortably before confessing I have MS. This is inevitably met by awkward exclamations of "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? And so when someone tells me "I sometimes forget you have MS" I feel a surge of joy. It can be tempting to deny this part of my identity, for in contemplating what it is that makes me unique, what makes me different from everyone else, I must also wonder, just how different is too different?

The challenge becomes figuring out how to accept a life with MS while somehow maintaining a continuous sense of self when it feels like there are (at least) two very different selves - the one before MS and the one after. How do we assimilate this diagnosis into our identities without allowing it to take over? A threat to the sense of self that begs ‘Who am I now and what the hell happened to the old me?’. It doesn’t seem healthy to reject the part of my identity that is MS but it doesn’t seem quite right to embrace it either. 

In fact I cannot embrace MS as a part of my identity, but accept it I must. In order to be happy, to honour my experience, to fight stigma, I can’t be afraid to put MS on my list, to put disabled on my list (even as I’m choking on the word just typing it). I can’t be afraid to claim it as part of my identity. And yet, I am. 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 or walk very far. That goes on the list. I can’t even pee without accessories. 

I can’t. I can’t. I can’t. 

I can’t speak Korean but that doesn’t feel like part of my identity. What can I do? Surely that list must be longer. I live in a city where I can get in a cab that will take me wherever I want to go. I can grab a cane and strap an AFO on my leg and take my dog for a short walk. I can speak French. I can travel. I can sing. I can make you laugh. 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. 

Who am I without MS? For better or for worse, that person doesn’t exist. I feel legit grief when I think about which version of me she would have been. But I cannot be divorced from MS anymore than I can be divorced from my freckles or the unseemly length of my toes. And then I realize that okay, maybe my toes are disturbing to look at in flip flops but my freckles are adorable. Why? 

Because I say so. 

You say sun damage and I say goddamn angel kisses. I choose that. I’ll never think of MS as adorable or heaven sent but it occurs to me I have some degree of choice in how I perceive it. I decide how I see myself and how I wish to be viewed. Person first. MS later. 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? I can’t erase MS from my identity but I can decide it doesn’t get a bigger billboard than my other characteristics. 

None of us gets out of this life alive. Few make it all the way to the end without impediment. And none of us are equally abled, gifted, talented or designed. Disability is a lot more normal than we give it credit for. Impairment is not an obstacle to being human. It’s part of being human and a reality we are all eventually faced with. It doesn’t make me less than. It doesn’t make me other. Nobody gets to choose all of what goes into our identities but we can, at least to some degree, decide what’s important and how much value each of our attributes deserves.

Cultivating a strong identity and favourable sense of self is empowering. It’s what facilitates being treated fairly and equally. It gives us the courage to advocate for better conditions and main floor bathrooms in public spaces (I’m looking at you Toronto). Perhaps instead of feeling like I'm the Times Square of having MS where every billboard is selling a different symptom, I could just have a little ad on kijiji and rent out some precious billboard space to some of the other things that make up me. 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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