In 2013, I was connected to Kevin Swan, a young filmmaker from Florida, who also has ALS. Kevin and I made a phone date, and quickly found that we had similar attitudes to living with the disease, mainly that we were looking to stay positive and to focus on what was good in our lives.
Part of our conversation centered around the idea that we really feel lucky to have been given the new perspective that we have, with enough time to actually put it to use. We meant this in comparison to having your life snuffed out in an instant, never having the chance to tell people you loved them that one last time. Sure, we all know that life is fleeting and that we’ll someday die, but until you’re facing it in a more immediate way, it’s hard to wrap your head around the concept. I’ll never have everything about this life figured out, but having ALS has helped me to pare away some of the extraneous bullshit and think about the best ways to spend my time.
Kevin decided that his time would be well spent by starting A Life Story Foundation, whose mission is to Rewrite the End of ALS by raising money for research and awareness building. He uses his background in film to tell the stories of other people with the disease. “ALS does not define who you are,” his website says. “It’s just a part of your story.”
Having known Kevin for a couple of years, one thing I’ve noticed is that he always looks dapper. Nice jackets and ties, big smile. That kind of effort is not easy, but it’s really important. It’s just one more way that we continue to care about ourselves, when we can’t always care for ourselves. Even in a t-shirt and jeans, Kevin Swan is nicely put together. So you can tell that being here still matters to him.
Although my once-muscled limbs are melting like ice cream, I can appreciate that desire to look your best. I mean, I wear Uggs every day, like someone’s toddler going to music class, but I brush my hair. I put on one of my maxi dresses, and I try to feel grateful for another day. I try to hold on to that feeling that Kevin and I still share, that we’re lucky to be here. That we still have work to do.