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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March is Multiple Sclerosis Awareness Month

March is Multiple Sclerosis Awareness Month and you don't have to tell me twice. Oh, I am well aware of multiple sclerosis. MS is screaming in my face all day long and waking me up at night. I mean, thank God it's almost April because I'm so sick of seeing orange ribbons everywhere and of hearing about MS from every news outlet. 

Oh wait. I mean the opposite of that. 

Sit down and pour yourselves an orange coloured cocktail, Trippers. Because it's about to get a bit rant-y in here.

It’s no secret that, unless we're talking about a package from Hermès, my favourite colour is decidedly not orange but as the official colour of MS Awareness Month it’s lack of visibility is actually a little troubling. Because we need considerably more awareness. MS is poorly understood, grossly underfunded and it affects a staggering amount of people. 

When we do hear about it the message is confusing. Even within the MS community we can’t agree on what that message should be. There is considerable controversy about how this disease is portrayed in the media, and in drug company ads. The overwhelming majority of what we see are glossy images of young and healthy people doing athletic things, smiling and happy. The kinds of pictures that entice us to try new medications. They’re the pictures of what we all hope to be. They serve to soothe and comfort the public that the number one neurological disease affecting young people worldwide is manageable. They promise good health with a simple pill. These images are well received by many patients for whom this ideal is even remotely possible and can be especially comforting to the newly diagnosed who are looking to see what their lives might come to look like.

I totally get this.

When I was diagnosed I read everything I could. It was terrifying. I attended a support group and wanted to throw up the minute I walked in and saw people who looked sick. I never went back. I hated the MS Walk because I couldn't bear to see people in wheelchairs. Instead of compassion, my own fear was reflected back at me. I felt panicked over my future. Seeing the effects of MS was more than I could handle. These were not my people. I was in my early twenties, dating and pursuing a career. I wanted to see the people who looked like me. The people who were doing well. The people who could reassure me my life wasn’t falling apart. I was sickened to see anything less. I remember someone pointing out a woman in her 40’s who walked with a cane. I was told ‘She’s had MS forever and she only needs a cane’. Only? I remember thinking. I wanted to barf. I swore I would never become that sick. To the newly diagnosed, MS is a minefield. I just wanted to protect myself. For me at the time, the more images of people with MS pursuing 'normal' lives, the better.

At the other end of the controversy are those that are angry at the current 'normal life' depiction of MS. Who feel outraged that the dancing, rock climbing, happy ice cream eaters are not a true representation of what MS actually looks like. After 15 years of MS, I get this too. I know it’s tragically laughable to promise yourself you will never become so disabled as to need assistance walking and yet I still hear others make this promise to themselves all the time. I also know how hurtful and utterly douchey it is to say this out loud. For clearly the implication is there are those who simply didn’t try hard enough to keep from progressing. I understand why MS’ers are pissed to see this Pollyanna presentation of the disease that looks like a lie for so many and that leaves their experience with it completely ignored and invalidated.

The message about MS is murky because the disease itself is murky. It presents dramatically differently from person to person. Even within the same person from year to year. My own disease looks nothing like the disease I had ten years ago. My story is different now and so is the information I need, want and can handle. As patients we can't agree on one simple narrative because there isn't just one. What we all have in common is an uncertain future and a need for more action, for the best minds of medicine and science to attack this head on. Yes, many live a long time without much progression. Tell those stories. 

But tell the other stories too. 

Because as comforting as the best case scenario may seem, there is real danger if we only tell that story. When we sugar coat the potential of MS we end up in a society under the false impression that MS is under control. That we’ve got it figured out and shouldn’t we move on to the next thing? A world where people ask ‘Why don’t you just take that drug I saw on tv? Doesn’t that fix it?’, or 'Didn't we cure that with stem cells last week?' 

The truth is MS is most definitely not under control. Even if these drugs benefit some, they are only capable of impacting a fraction of MS cases. We've spent billions developing new therapies to modify disease - why are so few research projects looking at determining the underlying cause? Because the drugs we have are simply not enough. None provide a cure and none address the underlying cause. They are wildly expensive and have plenty of serious side effects.

Educating is not about spreading negativity. It’s not about fear mongering. It’s certainly not about failing to celebrate all the wonderful things MS’ers on any spectrum of the disease can and do accomplish. But let's nor forget, MS is an awful disease. Of course there are no guaranteed outcomes but we must give voice to all possible outcomes. We cannot and we must not ignore those who embody our worst fears. People with more progressive MS are being erased from the conversation. When we fail to raise any alarms about MS we fail to mobilize the necessary resources to do the research and the work that so desperately needs to be done. It’s in everyone’s best interest to get this thing cured no matter how well you think you’re doing. 

In the MS narrative the story about how you can live a full life with MS already seems to be getting its fair share of attention and that’s good. There’s an important place for that. But we need to tell the whole story. The number of people living with MS is shocking. In Canada alone rates are as high as 1 in 1000 to 1 in 500 in some places. Orange is indeed the colour of MS Awareness. It’s also the colour of warning. We need to sound the alarm. It’s time to tell the whole story.

End rant. 

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MS Meltdown in 3, 2...ugh, no. Not today

I started to write about how tempted I am to give in to my simmering emotions and just let myself freak out. Frustrated with how poorly my legs are functioning, how hard it is to walk, to stand, to get dressed, to get anywhere. If I look at the calendar I’m totally overdue for my bi-annual trip to Losing My Shitsville. I couldn’t be blamed. 

But what’s the BFD? MS is old news. I turned my attention to what’s going right in my life. My essential needs are met. The people I love are safe. My puppy is snoring happily in my lap. I have wine. I like my hair. Suddenly I felt less like having a cow. And I deleted everything I’d just written.

Then The Banker, who didn’t even know I was on the edge of a meltdown, texted to tell me he’s leaving work early so he can drive me to my singing lesson. He doesn't want me to have to negotiate this freezing, slippery rain by myself. 


Yes, it fucking sucks that if I want to cross my legs I need both arms to lift one over the other. It fucking sucks that I need a cane on one side and a railing on the other just to heave myself up one tiny step. It fucking sucks that I depend on all the walls and furniture in the house to keep me upright. 

But that’s enough. I’ve acknowledged the bad and now I will put on some lipstick, kiss The Banker hello, and use my not entirely broken body to sing some big, loud notes. Because singing is pretty therapeutic for me. Maybe because it's a lot like screaming.

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Why asking 'What do you do?' is all kinds of wrong

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. 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 le rude in European countries like France where talking about oneself is a sign of faiblesse mentale that might be met with a side eye of shade. Mais pourquoi, you ask? Well, attempting to establish some kind of social order or trying to (gasp) network at a party is simply tacky. Furthermore, it doesn’t reveal anything about who we actually are. It’s tedious, lazy and totally gross. 

Because here’s the shocking 411. Lots of people don’t like their jobs. Many don’t wish to be defined or judged by their bacon making ability. Would you talk to me any differently if I were a corporate CEO or an amusement park carny? A barber or a bus driver? A teacher or a technician? For the underemployed, unemployed, those on disability, or somehow without a 'real' job, this question is stressful. Suddenly you’re in a status battle when all you wanted was some chablis to go with your chèvre. 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 disease. Serious illness often impacts careers. MS is a never ending identity crisis, morphing into something new just when you’ve made peace with the most recent version of yourself. In the midst of changing physical abilities, having to confront the question of Who am I if I don’t x is a circumstance most don’t encounter until retirement. It’s not easily explained over a cheese plate. Insecurities and self-doubt are magnified in the presence of this loaded little question where we might be sensitive to the perception of being ‘less-than’. 

Most of the time ‘What do you do?’, is not even something we really want to know. Sure, there are people who love this question. But God help the person who asks. You will be stuck in the suck zone of actually having to listen to the answer. AND YOU DESERVE IT. There’s nothing more throw up in your mouth-y than hearing about someone’s stupid boring blah blah and having to nod and pretend it’s fascinating as they try to impress with what probably literally applies to nobody else in the room.

So, let’s cool it for five minutes. I don’t want to know if you're a business analyst or a bank teller any more than I want to know if you like cats. I want to know whether or not we’re cool. If you get me. If you’re funny. It’s not a job interview but in the interview for my friendship, or even for my attention, I would much rather learn at least three of the following things about you:
  • What's your favourite brunch spot?
  • What are you drinking reading?
  • What's your karaoke jam?
  • Montreal or NYC bagels?
  • Is Steven Avery guilty???
  • Have you ever had sex with the host?
As luck would have it, I was at a function just last Saturday that required me to meet new people. Truthfully, it felt wildly inappropriate to ask the couple I’d just met if either of them had ever had sex with the mutual friend whose birthday we were celebrating (Geoff). And even though I’d already started to write this essay I clammed up and was downright weird when I was inevitably asked the dreaded question of what it is I do. I stuttered and stammered before exclaiming ‘Oh, look! Appetizers!’ Distracting people with charcuterie is one way to go, but it’s maybe not the coolest. The reality 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?

The question demands a clear cut one or two word answer like magician or astronaut psychic, not an existential essay about how I am a wife, aunt, friend, volunteer, traveler, archivist, entertainment and social coordinator, cook, half-assed housekeeper, sometimes singer and unpaid blogger, retired translator, former docent, full-time smart aleck and part-time concubine. All these answers sound defensive as hell or unapproachably sarcastic. Like, is she kidding? Nope. (Okay, one of those things isn’t entirely true). It’s quite possible I have a fuller life than you, random stranger, even if I continue to answer this question with an uncomfortable, squirmy look. 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 down into a socially acceptable party response. Lately, I feel like my disease hobbles into the room before me with a label I have to explain away. There is a negative judgment on me before I even open my mouth. 

I'm NOT drunk. I have MS. (Also, I'm a little drunk)

Obvi the answer is to know yourself and who cares what other people think. But at the end of the day, we need the short answer that satisfies the nosy room. It really doesn’t matter what that is so long as we know ourselves. The question will continue to be asked and since I can't actually move to France, the next time I'm confronted with it I think I'll just roll my eyes as I accidentally spill wine and mutter ‘Où est ma cigarette?’ Then I'll go find the carny and ask about his troubled relationship with the bearded lady. 

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Celebrities with MS - They're Just like us!

Yesterday actress Jamie Lynn Sigler told the world she’s been living with multiple sclerosis for the past 15 years. The reaction from Trippers everywhere has been one of love and support. Already there are hopes she will represent us, give us a more prominent voice, be the face of this dreadful disease. It doesn’t hurt that the face we’re talking about has Hollywood good looks, a beautiful family, a successful career. Sigler paints a pretty good picture of what MS can look like. This misunderstood condition could use some glamorous attention, but more than that we all seemed to breathe a collective sigh of relief at how real she was going to be about her illness when she said, 

"Stairs? I can do them but they're not the easiest. When I walk, I have to think about every single step, which is annoying and frustrating." 

Because we've been disappointed in celebrity attention and how MS is portrayed in the media before. 

Sigler kept her diagnosis private for many years before revealing it on her own terms. When I was diagnosed, news traveled faster than I could handle. I was naive and didn’t realize how important it might have been to keep it to myself as long as possible. I didn’t understand the side order of judgment and labels that come with MS. It can and will affect your professional opportunities. It changes relationships. You don’t get to control your own narrative. That whispering at the water cooler? No. It wasn't about my awesome new bag. 

Guys, I could see you watching me walk.

Facing my own ‘public’ has been and continues to be challenging. Like Sigler, you'd think I would have figured it out by now, but that's just not the case. Of course Sigler’s public is enormous. Truly public. For the rest of us mere mortals the concerns about what and when to disclose are the same. How will this affect my work? What label will people give me? How will this change my relationships and potential relationships? How do I seek support without compromising privacy? How do I ask for help but maintain an appearance of strength and positivity? How do I balance living an open and truthful life with what that is going to cost me?

As brave as JLS is, we can’t expect this woman to be the ambassador for MS. It’s not her job to take on this tremendous task. She didn't ask for this and we shouldn't ask her to advocate either. I'm saddened to hear of her diagnosis. I'm grateful to see a public voice that resonates a little more closely to my own experience and for her courage to come forward and share her story. To be able to say: It’s hard. Here’s what I’m doing about it. I’m still here. We're inspired by her bravery and grateful she has shone some light this way. I hope the world continues to be good to her and we as a community support her without thrusting unrealistic expectations to change the entire dialogue and public perspective.  As she said, ‘It’s part of me, but it’s not who I am’. 

And now let us pray for this girl because she is about to get Potato People'd so badly.

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New Year, New You?

It's the first day of a shiny new year. The day when all the mistakes of the previous year are behind us and anything seems possible.  By now at least a month of partying has been put to bed, its memories tucked away on Instagram. My liver and credit card are holding hands and whispering Thank God. We're safe now. The fun is over and as we face that icy, unforgiving bitch, January, it's hard not to wonder why a new year is something to celebrate when the fête is finie. A beginning that doesn’t technically require us to actually start anything new. Good news if you just need a mental boost, to symbolically wipe the slate clean of all the injuries and injustices of 2015 while you write the wrong year on your cheques for the next month. This is your holiday. You don’t have to change. That’s the gift of New Year's. It’s up to you. 

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

Vous pouvez même apprendre à parler français

Many start the year with big plans for major changes only to find themselves failing by February. So why bother with resolutions? Aren’t they just setting us up for failure? Maybe. But giving voice to our hopes and dreams is an important step to realizing them. A new year is a time to reflect on what’s positive in our lives and what needs improving. Even if we never keep our pledges, the act of making them means we take stock, examine what we like and don’t like. We get to know ourselves a little better and identify what's working and what needs changing.

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

So this year I am choosing simple goals. Despite disease and in my never ending pursuit of the best possible life, I will reflect on what it is I love to do, and figure out how I can do more of it. I will think about the people who lift me up and make me laugh and then commit to spending more time with them. I will pay attention to what makes me feel crappy and do my best to avoid those things. With hope and confetti still in the air, today at least, I will say fuck fear because dwelling on the worst case scenario is a waste of my imagination. 

It’s 2016.

Embrace unrelenting optimism. 

Happy New Year, Trippers.

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