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How I Accept Multiple Sclerosis Without Letting It Take Over My Identity

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In response to my blog To the People Who Say ‘But You Look So Good!’ About My Multiple Sclerosis  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 multiple sclerosis (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 eyesores 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? I have anxiety about becoming this kind of roaming advertisement because it seems MS is already too much of my identity. We are cautioned “Don’t let this define you” (as if this is the narrative any person wants to claim). We may 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.”

A diagnosis of MS can be a life-changing event precipitating an identity crisis about who you 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. In contemplating what makes me unique and different from everyone else, I must also wonder, “Just how different is too different?”

The challenge for me 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 I assimilate this diagnosis into my identity without allowing it to take over? 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 it, but accept it I must. In order to be happy, to honor my experience, to fight stigma, I can’t be afraid to put MS on my list, to put “disabled” on my list. I can’t be afraid to claim it as part of my identity. And yet, I am. To me, disability highlights what I can’t do and encourages me to define myself based on my 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 grief when I think about which version of me she would have been. But I cannot be divorced from MS any more than I can be divorced from my freckles or the unseemly length of my toes. And then I realize that OK, 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-sen,t 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. Impairment is not an obstacle to being human. 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 decide what’s important and how much value each of our attributes deserves.

Cultivating a strong identity and favorable 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. 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 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.

Follow this journey on Tripping on Air.

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Originally published: April 27, 2016
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