Change

I used to think all I wanted to achieve in life was a sense of comfort, to maintain and guarantee my access to it. My space, my quiet, my opinions, my routine, my calm, my guards. As long as I had one foot in a realm of recognizable normalcy, I could keep that anxious presence beneath at bay. For years, I believed the answer to discomfort was comfort, its pleasant and cozy counterpart rooted in familiarity, sameness. But I’ve since learned, it’s not comfort that softens the bristles of discomfort. It’s change. It’s action.

The last two years, as dramatically as it sounds, have been a battle, a head to head - me vs. discomfort. Who would prevail? Would I maintain who I am, this cozy world of familiarity that I’ve created (no matter its limitations), in the face of this diagnosis or would the discomforts of a life unknown consume me whole? It’s been an exhausting feat and I have realized it’s because I’ve been playing the same hand, using my same tricks, thinking my same thoughts, retreating to my same comforts as my means to push back against the discomfort that continues to arise.

My neurologist told me when I was first diagnosed that nothing had to change, that I would eventually grow bored of MS and live my life as I always had. No need to change. To some, and me at the time, what a relief! But now, I’m so disappointed that those were the words of wisdom I carried with me into my months afterwards. Words of “wisdom”, words that stunted me. Since then I have battled change for the two years following my diagnosis, seeing it coming for me but digging my heels in, resisting it because I was told I didn’t need to bend to it, that I should go about my life “normally”… but how does one do that after something so life changing? How does one ignore the weight and anxiety of something they know lies beneath the surface, something that is anything but normal? To ignore the change happening to them? How does one stay the same?

I tried to be normal, business as usual, keep smiling, keep my head up, play down my emotions, belittle my worries, make excuses, not talk about it out loud. I tried to make it normal, to be what and who I was before. But there’s nothing normal about a disease that came out of nowhere, a disease that has no explanation. There’s nothing normal about the tingling, the numbness, the random trips as you walk, the fatigue that weighs you down, the lesions that continue to surprise you, the treatments you have to rely on. It’s not normal to ignore the discomfort, to pretend like it’s not there. It’s not normal to not let it change you.

To maintain a sense of normalcy throughout discomfort is exhausting. My diagnosis jolted me into a new type of existence and the more I tried to fall back into the comforts I once relied on, the more uncomfortable I felt. My well-formed perspectives of myself, of my world, started to feel wrong, misshaped, not quite fitting right — the strive for perfection, the fear of confrontation, the hunger for acceptance, the pattern of self-deprecation, the preference for ignorance if it promised bliss, no matter how fleeting. I was ever so gradually being pushed out of my comforts, growing out of my old self. I was uncomfortable, I have been uncomfortable.

I’ve learned that to fight and push against change in the name of sameness is what creates the discomfort that irks and challenges you. Discomfort can be temporary, it’s meant to appear, interact, and fade away, yet resisting it once it appears, and refusing to interact with it, will only prolong its presence. Slowly I’ve been giving in, softening to the resistance, facing the change that I’ve been ignoring for too long. It took me a while to realize that that doesn’t mean I’m surrendering to MS, it just means I’m changing with it, that I’m embracing the growth it requires and moving away from the comforts that don’t benefit this new life, the comforts that now feel stifling, limiting, immature. That’s where the answer to my discomfort lies – in embracing change, accepting change, welcoming change.

I found a reprieve from the discomfort, once I leaned into the change. Once I accepted that life actually was different, that I was different now, I have oddly begun to feel more “normal”. Trying to maintain the same life, same views, same habits, same behaviours as the pre-MS me is what keeps me in perpetual discomfort. Trying to maintain my old normal is holding me back from a new normal, one that I will live with until pushed to accept another, and another after that. 

I feel as if there is a force out there consistently pushing against me, not meant to aggravate but to encourage. Perhaps it is the same one that invited me on this journey to begin with, constantly redirecting me whenever I fall back into my comforts. I don’t really believe in a god, at least in the way that I used to, so I don’t know how to verbalize what exactly I mean when I say a “force”… but I have gratitude for the persistence, the reminders, the reward, from whatever it is that carries me through to the next steps of this path, this journey, this dance. Ever moving, ever challenging, but only uncomfortable for as long as I make it, for as long as it takes me to take action, to change.