If you’ve been keeping up with my column, you’ll know that my parents and I are essentially living in a no-fly zone (only our closest friends are allowed to visit because the house is a mess and also probably a health hazard). There are boxes everywhere — and I mean everywhere. Our dining table is a catch-all for unopened mail, half-empty wine bottles, and of course, dust. It’s not a renovation if there isn’t dust on every available surface.
Despite the chaos of our surroundings, we’re slowly — slowly — making progress. My dad finished putting my closet together, so we’ve been shuffling things around: putting shirts on hangers, pants on racks, and hats somewhere — because there’s no identifiable place for hats, and I probably have too many anyway. My medical equipment now fits on one shelf, which is a miracle. Things make sense, at least to my stress-addled brain. My personal care assistant (PCA) isn’t quite used to the setup yet, but none of us are.
This morning, my dad and I went through the boxes that were stacked against the far wall, so I could move my clothing rack into place and free up some room for my PCA’s daughter’s spontaneous dance parties. The boxes contained picture frames, miscellaneous knickknacks (for which I still don’t have a place), and childhood keepsakes that are finally going into storage after years of being on display. Tonight we’ll be hanging frames, covering the plain white walls with something other than caulk and spackle — thank God. I can’t wait to cross it off my to-do list.
My mom is in Brazil right now, doing things that adults do on prestigious business trips, which is why my dad is helping out. Usually, my mom would be the one organizing my closet, sweeping the remains of my poor fern, Demelza, off the floor, stacking boxes on top of more boxes so that our brains can breathe a little easier. But she’s doing adult things, which is to say she’s earning a living, so my dad and I are doing our best. We make a pretty good team, assuming we’re well-rested.
It’s frustrating, relying on my parents and PCA to get things done. I love organizing things. I would gladly spend an entire weekend cleaning the house, rapping to “Hamilton” and zipping through podcasts at 1.5 times speed. My brain is buzzing with ideas! I’m the Tasmanian devil of home decor! But my body and I are at odds. I have no choice but to sit down, shut up, and delegate.
SMA is a lot like living in a construction zone. Nothing is where it should be, you’re constantly tripping over boxes, and if you want to get anything done, you have to tell the contractor to tell the plumber that the faucet is supposed to be brushed nickel, not chrome. Even when things are orderly, you’re still probably breathing in dust. But once you get the hang of things, it all becomes a little bit easier. You sidestep the boxes out of habit and, if you’re lucky, find serenity in the chaos.
Maybe that seems impossible to you right now. I was diagnosed at 9 months of age, so SMA is all I know — I can’t imagine what it’s like for newly diagnosed patients or families that have been shaken by the news. But as someone who has made it through to the other side, I can tell you with (slight) confidence that it gets easier. It does. It might take a while, and it might not look like you’re expecting it to, but serenity will come, one way or another.
You’ll figure it out. And you’re not alone.
By the time you read this, I’ll be halfway to Anaheim, California, for the Cure SMA conference. I’ll be meeting with long-time friends, fellow columnists, and the love of my life, Poe Dameron, at Galaxy’s Edge, and I’ll be documenting all of it on Instagram and Twitter. Follow me on social media for updates, and stay tuned for next week’s column, which will be all about SMA, community, and Poe Dameron (of course).
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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