I was the kid with 50 different diaries. Usually pink with sparkles. Bonus points if they came with their own bejeweled pen, because what 9-year-old girl doesn’t like rhinestones?
The issue is that I never used them. People would buy me diaries and I, collector of all things pink and purple, would squeal and thank them and promise myself with all sorts of faux intentions that I would, in fact, develop a habit of journaling. I grew up, got into New Year’s resolutions, and dedicated myself to the idea of keeping a diary. Whatever that meant. Bullet journaling? Excessive posting on Tumblr? A variety of mood-recording apps? The diaries stacked up, and every year I failed to keep a decent account of my life.
Until I started this column.
I started this gig with all sorts of ideas on what to write about. Discrimination! Mental health! The woes of traveling with a disability! Existential dread! But then I ran out of topics, and I realized that it was easier to just … write about whatever happened that week. Sometimes life was slow, but in general, SMA never left me without some stupidly ridiculous encounter with an ableist passerby to record in detail.
Accidentally, or maybe inadvertently on purpose, this column became a record of my life. A diary for the public. Sometimes I revisit old columns and pat myself on the back — what started out as a halfhearted rush job became something oddly akin to decent. Don’t ask me how it happens. I have no idea. Part of me thinks it’s magic, as Catherine Andrews defines it in her newsletter, “The Sunday Soother.” Sorcery.
I grew up with this column. Which is a sentimental thing for me to say, but it’s true. I started as a college junior with badly dyed, box-color hair. Weeks after I started, I realized I could actually get my hair dyed in a salon, despite the awkward angles of my headrest. I thus became a college senior with salon-dyed, but ultimately unhealthy, hair. Eventually, my hair refused to cooperate with even the highest quality dye, so I became the blonde I was always meant to be. If that’s not a metaphor for growing up, I don’t know what is.
You have been with me through career dilemmas and diagnoses and the identity crisis that is the early 20s. I don’t always write about SMA, and maybe I should, but this feels truer. Life with SMA isn’t just life with SMA; it’s life with career dilemmas and diagnoses and identity crises, all of which are impacted by SMA. I wouldn’t have panicked about my future as a mental health counselor if I could physically handle a 40-hour workweek.
This sounds like I’m breaking up with you, this column, the faithful readers of this column. I’m not. I’m just … getting emotional about how far I’ve come. It’s part of the whole sentimentality thing.
If you follow me on social media, you’ll know that I’ve started as a copy editor for BioNews Services, the parent company of SMA News Today. It was one of those opportunities that fell into my lap — like magic! Sorcery! Three days into the job and it’s a perfect fit for me. For the first time in my life, I’m an adult with an actual adult job, getting actual adult pay. Again, this has nothing to do with SMA, but if I wasn’t disabled, it would be nowhere near as difficult to make a living. SMA means this job is an actual, literal blessing, and I am so incredibly grateful.
I’ve changed so much since I started this column, from brunette to blonde to college graduate in the process of getting her master’s, who just so happens to be on Prozac. I wrote a few weeks ago that for the first time in my life, I am happy. In light of that, my decision to drop “The Wolf Finally Frees Itself” from a weekly publishing schedule to a monthly publishing schedule feels accidentally poetic — or maybe just inadvertently meant to be. I’m a big believer in fate, apparently.
I graduate in less than a year. If things go according to plan, I’ll soon have a finished draft of my book. I’m blonde again, working and writing and playing Dungeons & Dragons. You’ll still be hearing from me — just not as often.
Freeing yourself is a lifelong process. There’s always another trap to squirm your way out of. So, this isn’t goodbye. I’ll be back next month, probably to talk about working and writing and Dungeons & Dragons. You know me.
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.