As a kid, I assumed that happiness would be accompanied by a kiss in the rain, like the iconic scene between Hilary Duff and Chad Michael Murray in “A Cinderella Story.” Or that scene in “The Princess Diaries 2: Royal Engagement,” where the queen of Genovia is showing her granddaughter, Mia, around the palace. They enter Mia’s suite, and Queen Clarisse reveals a walk-in closet full of dresses and shoes and glittery tiaras. Or maybe it’s my favorite scene from Disney’s “Tangled,” where Rapunzel dances barefoot through the kingdom of Corona.
I knew what happiness looked like. Happiness was an abled body. Straight teeth, bare skin, and a roguishly handsome teenage boy who stood up to the mean girls at prom and declared his undying love for me. “To hell with disability,” he’d say. “I don’t care about your wheelchair! I love you for who you really are!”
Or maybe that’s just the plot of my long-abandoned “Camp Rock” fan fiction. At this point, the fantasies are starting to blur together.
Now I am 24. I will always love the lantern scene from “Tangled.” But happiness is less about how many friends I have and more about how real I can be with the friends I do have. Can I make awkward, high-pitched noises about Joe Jonas’ fashion choices in the late 2000s while watching “Chasing Happiness”? As a kid, I wanted dozens of friends. Now I’m happy with four, maybe five. Anything more than six and I get harried, bouncing from Facebook message to Facebook message like a chicken with its head chopped off.
I am happy. It doesn’t look at all like I thought it would, but that’s OK. My skin isn’t clear (thanks, Accutane). My teeth are gloriously crooked. I have never been kissed in the rain. My cousin gave birth today, and there was a moment of sadness, an inkling of grief — a parallel universe, maybe, where I’m married and pregnant and maxed out on Facebook friends. But then I snapped into my body. My broken, disabled body, with chronic tension headaches and astigmatism and a stuffed nose, and I was happy again.
I will always want the “Ever After” ending. Who wouldn’t want a rakish Dougray Scott to say your name with heartbreaking reverence as he guides your soiled slipper onto your foot? The fantasies are a part of me. Letting them go would come dangerously close to cutting my own heart out.
But the happiness that I’ve found is sweeter, I think, because it’s mine. I’ve put my back into it, my sweat and tears. I can’t keep succulents alive for the life of me, but I have grown this tiny blade of green with soil and sunlight. I’ve nurtured it. I’ve even stuck to a watering schedule by literally putting reminders in my Google Calendar.
It doesn’t look like someone else’s happiness, which is where it trips me up. I should want kids. And I do! I want engagement photos and preschool bills and Christmas with the in-laws. I want a nominally boring existence. I want to accomplish things when I’m supposed to, and then, when I’m all wrung out of life, I want to die in my sleep. No funeral for me, thanks. I want a celebration of life.
But it is mine. And that’s hard to accept sometimes. The middle-schooler in me is insistent on kisses in the rain. She wants an entire lunch table full of giggling girlfriends. Instead, she gets a semi-active group chat of people who play Dungeons & Dragons. She gets chapped lips from her acne medication. She gets climate change and a possible recession.
Nothing is as it was supposed to be. But there is beauty in that.
The 24-year-old in me gets giddy at the thought of giving societal norms the middle finger. I am disabled. I am single and living in my parents’ house. I am completely dependent on the people around me. I shouldn’t be happy, but I am, surrounded by candles and half-dead succulents and the stuffed animals that I use as back supports in bed.
Maybe one day I’ll get my kiss in the rain. But for right now, I’m the wild and gentle young woman who’s giving social norms the middle finger.
To hell with disability. I love myself for who I really am — wheelchair and all.
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.