I moved in with my parents in the spring of 2019; it’s hard to believe that four years is right around the corner. I was in the house in Monkton for almost five, my longest time in one place since childhood. But the years are passing along faster these days.
It doesn’t seem like they should, given the physical deterioration that makes the past feel so distant. And it does. Though I know my days of independent living aren’t so far behind me, they’re already hard to remember. How can I relate with someone so different from myself? We all start each day a bit different from the day before, but for those of us with ALS, with no reasonable hope of reversal, it can be hard to connect with any day but today.
I spent the better part of two years working on my memoir, and that singular purpose filled a lot of holes in my life. For those last five years of independence, keeping up with daily tasks seemed like enough. Living on my own, keeping my metaphorical (and actual) feet under me seems to have been enough of a purpose, though I didn’t see it in those terms. That changed overnight once I moved.
I vaguely remember that first winter at my parents’. Where there had been tending the wood stove, making my meals, and even going places in my car, now, there was nothing. I felt so unbelievably empty. I thought, So, this is how it’s going to be, and resigned to a meaningless and miserable existence. I sat in a warm, cozy house on the short, cloudy days of winter and tried to find things to occupy my time.
Two days into the new year and almost two months into the chilly, rainy (or snowy), muddy (or snowy), gray-skied season, I’m right back where I was, feeling empty, lacking and seeking a purpose. I’ve told new residents of Vermont that the key to getting through, and truly, enjoying the winter, is to get outside and do stuff. Embrace the snow and enjoy coming back to a warm house. That’s harder to do in a wheelchair, especially when it’s 42 and raining in January.
I made a resolution to seek out more joy in the new year. I chose those words carefully: “seek out,” put in more effort, and “joy,” momentary happiness I’ve long been short on. Try harder; put in more of an effort. Get outside more, connect more with friends and family, and try to spend time with women. That last one may seem improbable and would come as a pleasant and assuredly unattainable surprise to past versions of myself, but it’s not as ridiculous as I thought. It is ridiculous, just not entirely so. As I’ve learned so many times since my ALS diagnosis more than eleven years ago, often, the key is to keep trying.