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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