The festive side of the year is around the corner, and that always gets me excited!
A key part of living with spinal muscular atrophy (SMA) for me has always been that I got sick in the winter. Starting around Halloween, and going the whole way through to Easter, we would be battling repeated chest infections for me.
Halloween excitement art of childhood
So this time of year always had to be considered a little differently as a child and as an adult.
As a child, in a country school and the only kid using a powered wheelchair at the school, I loved hitting up the school disco. This was in the mid-1990s, riding the wave of the love for hits like Hocus Pocus. And so every year my costume was quite simple.
But being able to mix with kids and knowing we were all in costume together was somewhat of a leveler for me.
What candy can I safely chew and swallow
Perhaps the most important thing, though, was that my parents empowered me to know what sweets I could safely chew and swallow.
During Halloween it can be near impossible to control the candy and sweets around your kids. But you can empower them to make choices that are safe for them.
For me it was knowing chewy or squishy sweets were probably not going to work. It was about experimenting at home with others which would dissolve in my mouth, or finding clever ways to let me eat my seasonal favourite - the candy apple - by slicing it and using a fork to eat it!
Dancing in my wheelchair
Next was the empowerment to know that while I maybe couldn’t do the Macarena like everyone else, I could still do the Macarena.
And dancing in a powered wheelchair when your body movement is limited, is all about getting the chair in the groove. That meant learning who is around me, not running over toes, but also embracing that dancing by driving is still dancing.
But for me Halloween was also about finding the fun through illness. Because more often than not, I wouldn’t be well enough for the things I enjoyed doing.
Other kinds of fun if not feeling well
It was about finding movies I could watch and enjoy even when I felt miserable. It was about trying new types of hot chocolate to keep me warm as the temperature cooled. It was also about learning cool spooky things from hundreds of years ago.
As an adult -costuming fun
As an adult, I still put a lot of stock into Halloween. But nowadays I see my wheelchair as an asset to my costumes. I’ve been a floating ghost and the house from Disney Pixar’s UP - even before wheelchair costumes were a thing!
Halloween marks the countdown to Christmas for me. I gather the chocolate coins, I have permission to put cinnamon into everything. And there’s always The Nightmare Before Christmas to watch over and over - one of very few movies from my childhood where a wheelchair user was present. And perhaps the only one even now where the wheelchair isn’t the story.
Other ways to celebrate holidays
Finding new and unique ways to celebrate a festive period - whatever that festivity may be - is an important part of life with SMA. It forms traditions that can be held regardless of what’s going on in our lives.
Halloween has also been a unique time for me to examine my identity as a disabled person. We see a lot of disability representation around Halloween, but not all of that representation is accurate or correct.
But carving disability related things into pumpkins - like a wheelchair with wheels the shape of hearts - may not be the spookiest thing. But it is a fun and different way to explore identity. And turning myself into an animated house or a ghost also allows me to explore my identity as a disabled person in a different way than I do normally.
One thing is for sure - we can enjoy the festive season to the max, and SMA doesn’t need to impede that.
Have you found something to help you mentally cope with SMA?