I experimented with highlights in middle school. I wanted to get this professionally done, but my mother, who’s been dyeing her own hair for probably longer than I’ve been alive, insisted we use a box kit, like the kind you find at Target.
It became a routine. A ritual, even. Every few months, usually on a Saturday morning, my mother would lay me on the changing table, cover my head with one of those flimsy plastic caps, and get to work. For every highlight, you have to puncture a hole in the cap using a small, sharp tool. If you actually manage to pierce the cap, you have to then grab a strand of hair with the gleaming, curved end and pull it through. To my impatient, middle-school self, it felt like torture, and sometimes my scalp aches out of sheer remembrance.
This lasted for a couple of years. Then, probably around my senior year of high school, I went from blonde to brunette. Again my mother insisted on a box kit, and again I agreed.
It worked fine, for a while. Box kits aren’t the best way to dye hair, but in my case, it was my only option: There was no way I’d be able to get my hair dyed in a salon. How was the stylist supposed to rinse my hair? I couldn’t sit in one of her chairs, much less get my chair close enough to the sink. It wasn’t just improbable; it was impossible. So I settled for what I had, which, for many years, was a decent dye job.
When I think back on the first two decades of my life, I’m faced with the concept of improbabilities and impossibilities. I never thought I’d fall in love. I never thought I’d be content with myself — this strange, apocalyptic body; this mind and heart. I never thought I’d have friends. People that lift me up; people who “evoke my best self,” as one of my favorite people said to me last night. Part of it was social anxiety, sure, but most of it was an unfounded belief that SMA and a healthy social life were not meant to mix. How could they? In my mind, there was a part I had to play which ultimately had nothing to do with intimacy — even of the platonic kind.
There are so many things I’d say now to that girl, who believed so strongly in the immutability of the impossible. You will fall in love, or You will learn contentment, or You will find people to lift you up.
Or maybe something simpler: You’ll get your hair dyed in a salon one day, and the whole world will crack open for you.
It was such a simple thing. My wheelchair, tipped all the way back, with nothing but a plastic bag keeping my headrest from getting soaked. Sitting beneath the dryer, reading a book, watching my PCA as she bounced her 5-month-old daughter on her knee. Looking at myself in the full-length mirror — looking at the pale, pock-marked skin; the acne scars; the crooked teeth; the jagged slope of a nose — and not succumbing to self-hatred. Improbable things, every one.
I shouldn’t be alive today. So even my life, my continued existence, is improper; something that should never have come to pass. Another improbable thing, proved possible.
It’s not easy, turning improbables into possibles. It’s hard, grueling work. But I think of my mother, chipper and bright on a Saturday morning, piercing holes into the cap, tugging on my hair, my mouth wide in one long cry—Mom! That hurts! And the finished product, like spooling threads of gold.
You will fall in love. You will learn contentment. You will find people to lift you up.
Tonight, when my mother gets home from work, I will show her my new hair — dark, curled, shining. We will laugh, probably, about once-impossible things, and I will be grateful, even for the least of these.
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.