I’ve been meaning to update my website for years, so I sat down in January with the intent of revisiting my online presence. It just so happened that my sitting down coincided with my career change, turning a website overhaul into a complete rebrand.
I thought about my goals and values. I asked myself what I wanted to do with my time and energy. In short, I took a long, hard look at my life. I evaluated and reevaluated and walked away with the discomfiting knowledge that I wasn’t entirely happy.
The past three months have been an exercise in discovering what fulfills me. I’ve been meditating more. I’ve stayed up late to finish books. I’ve stopped for cupcakes on my way home from therapy. I’ve reconnected with old friends and scheduled appointments that were long overdue. I’ve started an antidepressant. Long story short, I’ve set changes in motion, while also reflecting on subjects like purpose and legacy. (Somehow, I always find my way back to “Hamilton.”)
I’ve also thought a lot about this column. Before joining BioNews Services, I had never really engaged with the SMA community. I attended MDA camp as a kid, but the connections I made there petered out after a couple of years. For the most part, I was happy in isolation. I thought I could do it on my own, so when I agreed to write this column, I didn’t know what I was getting into. I could write weekly columns, no problem, but the community part was new to me.
I was used to doing things in a vacuum. Shouting into the void, as it were. Apart from my one viral tweet, I’ve never thought of myself as having a platform. My SMA was just that: spinal muscular atrophy, an annoyance of a disease that continues to stick its nose in places it doesn’t belong. It was a part of my identity, but no more than my writing, my education, my love of “Star Wars.” It’s one aspect of a multifaceted life — a life I document here, through this column, for all of you.
Over the years, people have told me that my disability happened for a reason. I’ve carried this idea with me, the notion that I am meant to do something, to help people. In a way, this column factors into that. I write what I do to shed light on disability. Sometimes it’s the highs: By the time you read this, I’ll be sitting in a tattoo parlor, getting the flowery ink of my dreams. Other times, it’s the lows: the hospital visits, the depression, the uncertainty that eats at you.
It’s not easy. Being vulnerable on Twitter is to be expected because it’s performative, poetic, a cultural milieu. Being vulnerable here, week after week, is something altogether different. I talk about topics that matter to me, like mental health, sex, and dating, because I have the chance to normalize what is otherwise an abnormal conversation. People say “disability” and “mental illness” like they’re things to be ashamed of, to fight against, or to apologize for. Here, I can celebrate, grieve, and wrestle with them — as I struggle with all of the other aspects of my life.
I don’t mean to say that my life, my column, should represent the community as a whole. I merely want to add dimension to what is already a multidimensional conversation. I’m as real as possible here in the hopes that someone out there can find solidarity in my words and know they’re not alone. That’s the power of a platform.
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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