It’s hard to live in the present when the past feels as close as my shadow. I can’t stop thinking about the things I have lost. I’m nearly immobile, so the things I miss most are physical. I miss my feet touching the ground. I miss the luxury of scrubbing my scalp with shampoo and my face with soap. I loved the feel of writing with a freshly sharpened pencil. Above all, I yearn to wrap my arms around my husband again.
I have also lost my voice, so I have a whole other list of longing around that. I miss humor the most. Being funny happens in the moment. Banter, sarcasm, puns, inside jokes, even movie commentary all happen so fast. Asking people to pause so I can type a joke means the moment has passed. There’s nothing more awkward than people silently waiting to indulge in your attempt to be funny.
Focusing on the past has led to jealousy. While returning from a recent doctor appointment, I got stuck in downtown traffic. While watching people walk with ease across the street, I was struck by a feeling of jealousy, like a monster consuming me. I glowered at people holding children the way I will never again be able to hold my godson. I observed a man juggling his briefcase and cellphone while answering a call. It was like watching a ballet. I couldn’t believe I had ever moved with such ease and grace. The memory was both distant and visceral.
Slowly, though, I have come to accept that living in the past means I am missing an equally precious present. I haven’t stopped mourning being a part of laughter and hugging those I love. I never will. My jealousy hasn’t disappeared either, but sometimes it is not so painful. Ironically, my loss is what has taught me how to live just a bit more in the present. I realized that with ALS, there’s always more to lose. I may not be able to make people laugh, but I can still laugh, and that’s something. Maybe one day, I won’t be able to laugh, so I should appreciate it now. Gratitude has helped me to step out of the shadows of my past to fully appreciate and experience the present. I hope it can do the same for you.
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