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Finding Comfort Beyond the Discomfort in Life With a Progressive Disease

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I’m not quite sure to what to attribute the extreme joy and gratitude I have been experiencing this summer.

It started on my birthday, about six weeks ago, when I woke up fever-free for the first time in seven days. I was just so ecstatic to feel healthy again. It didn’t hurt that I went on to spend a lovely day with my family, riding the roller coaster at the pier and eating dinner by the beach.

My happy streak continued a few days later when for the first time in so long, I danced the night away at my younger cousin’s wedding. I danced alongside my husband, my boys, my sister and brother-in-law, my dad, step-mother and extended family. Surrounded by love, celebrating love. While dancing. Not bad.

Then a week later, my husband, boys and I embarked on one of the most magical, awe-inspiring adventures through the Canadian Rockies from Lake Louise to Jasper to Banff. I walked on a glacier, canoed in a lake at dusk, saw bears snacking on dandelions on the side of the road and more. Surrounded by my favorite people. Immersed in the magnificence of Mother Nature’s unadulterated beauty, one of my first true loves.

The fact that it’s summer (I love summer) and the fact that both of my kids are simultaneously genuinely happy with the camps they’ve chosen (somewhat unprecedented) is also likely contributing to my feelings of joy and gratitude.

In fact, I have no doubt all of the above circumstances are likely playing a role, but there is one fundamental circumstance that certainly is not. Not directly, at least. My disease. It hasn’t magically disappeared nor has it improved. It’s as challenging and uncomfortable as ever. And yet my current mood stands in opposition to it.

I felt emotionally overwhelmed and physically taxed just a few months ago. I was cycling through that most vulnerable phase of grief — where all the fear, panic and sadness permeates my defensive protective membrane and the weighted awareness of my disease sinks me into the deepest crevices of the vortex. It is there where I inevitably surrender to the tears and the pain and the loss. I stay there, traveling to the edges of the darkness. And then, somehow, I survive.

As I write this post and truly reflect on why I have experienced such a sustained level of joy in these last couple of months, I realize it is precisely that phenomenon — the survival of the deepest levels of emotional discomfort — that liberates the most authentic joy from within me.

Discomfort is built into the human experience, muscle wasting disease or not. The sooner you grieve the loss of not being able to live a life free of discomfort, the sooner you live in the emotionally comfortable space of acceptance. Once in acceptance, you can adapt to your reality and experience the comfort beyond the discomfort.

For me, this summer, adapting has meant going to the pier with my family despite the discomfort of waiting for what felt like an eternity for the wheelchair lift to take me and my scooter up to the rides. It meant dancing at a wedding reception despite the discomfort of moving awkwardly in my body while holding onto my sister for dear life. It meant taking an active, adventurous trip to Canada despite the discomfort of having to navigate difficult terrain and missing out on spectacular views from the tops of inaccessible mountains.

There is discomfort in doing all these things, but there is so much more discomfort in not doing them at all. It feels good to experience joy when life is working out the way you want it to. But it’s almost electrifying to experience joy when it isn’t.

I know this disease, relentless and progressively debilitating in nature, will continue to cast dark clouds over my life. I cannot control how or when they will show up. But I can control my willingness to stay there long enough to feel the sun’s warmth re-emerge and cast its light on the most exquisitely authentic joy out there. In my experience thus far, it has always proven to be worth it for me.

Originally published: August 15, 2019
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