I’ve mentioned a couple of times that I don’t think I could live in the middle of nowhere. My parents want nothing more than to raise a few goats in rural Wisconsin, where they recently bought their “forever home,” a small farmhouse with decent acreage. I, however, would lose my mind in that kind of scenario. Not to mention that all my friends are here in Minnesota, along with my doctors, which arguably are the more important of the two.
I’m pretty independent, but I still need help in the morning, which means I can’t just live on my own. So, over the past year, we’ve been trying to figure out how I can live in the Twin Cities while my parents live in Wisconsin. We eventually decided that our best option would be to share our current house with another person with disabilities. Ideally, I would live on the top floor, my roommate would live in the basement, and we would share a live-in personal care assistant who would stay in the guest bedroom. It’s a somewhat complicated arrangement, but I can see it working. I’m not the only person who’s done something like this, and I’m definitely not the only person in a wheelchair who’s wanted to live independently.
My dad is skeptical. Or he was. I recently managed to get Mom on my side, and he knows that when we set our minds to something, we usually end up getting our way. But I wasn’t at all surprised that when my mom suggested renovating the ground floor (my parents and I would trade places, with them in my current room and me in their soon-to-be-renovated ground-floor suite), my dad started laughing. My mom is notorious for coming up with projects, so it was a fond, amused type of laughter.
Mom is running through the numbers, which means it is happening — it’s just a matter of time. And, to my surprise, I’m actually a little bit emotional about moving. I’ve been in the basement since 2014, which isn’t terribly long, yet it feels like an eternity. I was a freshman in college when I moved down here. This room has seen me through so much personal growth. I can’t count the number of all-nighters I’ve pulled down here playing video games and crying my way through Selena Gomez music videos. (Thanks, depression.) I earned my bachelor’s degree in this room. My cat and I watched “A Series of Unfortunate Events“ here, cuddled up in bed together, her whiskers tickling my nose. I’ve killed plants and written poetry in this room.
I became me in this room.
Sometime in 2016, I started decorating the wall above my bed. I spent hours on Pinterest and Tumblr, printing out images, poems, and little reminders that I wanted to look at every morning when I awoke. Looking back, I recognize it as my attempt at reclaiming my room. I was so depressed in the two years after I moved into the basement that I didn’t do much decorating. My shelves were full of books, but there were no plants, no posters, no fairy lights, just plain white walls and a hospital bed that reminded me how disabled I was.
I barely left my room during those two years, sleeping in till 3 in the afternoon. When I recovered, I wanted to erase the long hours of isolation and cognitive dysfunction, so I decorated. About every six months, I take everything down and start fresh. It’s my way of cleansing. Last year, I printed out a little piece of art that just said, “Good things are coming.” In a way, that was my mantra for 2018: Good things are coming.
And they did! So many good things came in 2018. And now it is 2019, and I’ve replaced “good things are coming” with “one day I will make some good art,” because that’s my focus this year: getting back into the swing of things, reminding my post-depression brain what it is to be creative.
I love putting stuff up on my walls, but I love taking stuff down as well because it reminds me of how far I’ve come. And now, faced with moving upstairs and leaving those walls behind, I’m even more grateful for all the lessons they’ve taught me over the years. But I’m not stuck in the past. With renovation comes decoration (I fancy myself an interior designer) and a change in lifestyle, both of which I’m more than ready for.
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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