My family has a saying: “It’s always an adventure with us.”
It originated with Katelyn, an honorary member of the Albers household and my first personal care assistant (PCA). “It’s always an adventure with you,” she once said. I don’t remember the context — it could’ve been anything from a scrape with my misanthropic cat to a jaunt downtown fraught with snowy streets and bumper-to-bumper traffic. But I’m sure it was something borderline comedic.
People with SMA will know what I mean when I say that things just happen. The hotel messed up our reservation and is clean out of accessible rooms. We’re halfway across the country with a faulty wheelchair charger and a week left of vacation. My G-tube replacement went haywire, so now we’re cruising down the interstate with blood gushing from the hole in my stomach because my PCA fainted at the sight. Chaos! Grimdark happenings, all by chance! Cue laugh track.
It’s always an adventure. SMA is a variable waiting to wreak havoc. You never know what will happen, which is fun for a while. But it always grows old. You inevitably want a normal, run-of-the-mill vacation, with middling breakfast bars and hotel rooms that smell of cleaning solutions. You want something to go as planned, just this once, just so you can look back on that one miraculous time with fondness.
But it never goes as planned. Once the spirit of adventure gets hold of you, you can never, ever escape. So you make it into a joke. “It’s always an adventure with you,” my dad says. “Katelyn sure knew what she was talking about.”
2020 was meant to be a year of adventures. I had visions of celebrating my 25th birthday in Chicago. Instead, I celebrated social-distance-style, with carefully-selected loved ones sitting 6 feet away from me, suffering beneath their face masks. I wasn’t able to throw the party of my dreams, with celestial streamers and rose gold photo backdrops. I wasn’t even able to see all of my loved ones — our screened porch can fit three to four people, maybe five if we’re feeling ambitious. But I’m an expert at staying home, and armed with a quarter century of isolation know-how. Adapting to this era of Zoom calls and social distancing is just another adventure.
At one point in time, adventure was the California coast, and Disneyland, and the largest tree in the world. Now it’s simpler. Now adventure is getting out of the house without exposing myself or my loved ones. Taking precautions for the safety of others while also attending to my mental health. Taking a good, hard look at the next six months — wondering what the future will hold, wishing things were different, raging and grieving and choosing every morning to live with audacious, unabashed hope.
Adventure looks different these days. But there are glimmers of the past and distant future. Driving to our Wisconsin home for a long weekend, only to realize that we forgot my BiPAP mask. Debating what to do — it’s 8:30 p.m., and it’s a three-hour drive round trip, and I can’t sleep without my BiPAP, and we need to do something. Deciding to drive home, stay the night, and come back in the morning, BiPAP in tow. Stumbling down the driveway in the dark, dodging mosquitoes like it’s my job, listening to my cat caterwaul for an hour and a half because she doesn’t like the pet carrier. Getting bit by a mysterious bug and watching my hand swell from an allergic reaction. Scrapping the plan less than 24 hours later because Mom isn’t feeling well.
All of it is an adventure. Maybe not the adventure I wanted, but the adventure I’ve been given. And that, taking the adventures as they come, even when you’re sweaty and caked in bug spray and ready to fall into bed, that is living.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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