The Importance of Paradises in a World on Fire

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by Sherry Toh |

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A single lyric keeps ringing in my head from Fletcher’s latest single, “Her Body Is Bible.” It goes, “Hold on tight, when the world gets hard, this s**t’s like paradise.”

The song appears pretty straightforward at first blush. The lyrics and the imagery are simple, attempting to reclaim religious language from those who believe queerness and being open about sexuality are perverse sins, in the tradition of many queer anthems. It has two verses, with a repeated pre-chorus and chorus. The two-minute run time means it can sound a little bit repetitious, but overall, it’s a catchy bop to dance to.

But the construction and execution of the lyric I singled out shows the track is deeper when examined closely.

Fletcher sings “hold on tight” so earnestly, like she’s in the room with me and we’re eye to eye, preparing to face our fears. She acknowledges the world is hard, at a time when many of us feel like we’re flailing in chaos. Then the music cuts toward the end of the lyric, and all a listener hears is Fletcher’s voice echoing, as though she’s brought us to a private paradise — something everyone needs from time to time, but I think especially now.

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The effect is a track that somehow weaves the physical, emotional, and spiritual together.

Lately, I’ve been feeling like the world is on fire and there’s no quelling the flames. The war between Russia and Ukraine is dragging on. Inflation and gas prices are rising as a result of the war and the COVID-19 pandemic. There are supply shortages for every necessity, including milk formula in the U.S. and chicken in Singapore, where I live. Not to mention the protests against varying human rights violations that have been happening globally, which have implications for disabled lives.

The state of my body isn’t helping. In the past few weeks, my spine has curved and bent to the point that the chronic neuropathy it’s causing has worsened considerably. I can feel my spinal disks rubbing each other from time to time. I’m now on three different painkillers. Additionally, I don’t know when, if ever, I’ll be treated with Evrysdi (risdiplam), a disease-modifying drug that could slow the curving of my spine by giving me the strength to sit straighter — this despite all the columns I’ve written about how it could help me.

My one comfort right now is that I’m not alone in the grief for how the world is and what living with SMA is like. “Her Body Is Bible,” weird as it may sound for a song that could seem like it’s just about gay sex to the casual listener, reminds me of that comfort. When I hear it, I sometimes imagine myself, my loved ones, and strangers acknowledging that we all have to hold on tight for the trials we’re facing. Other times, I imagine I’m laughing with my best friend and fellow columnist Brianna Albers or cuddling my partner, Hannah, in the paradises we’ve created for ourselves when the world gets too hard to breathe in.

I wish I had something more uplifting and eloquent for readers during this first week of Disability Pride Month. Sadly, I’m in a place where I don’t quite know what to say and have too much to say that might not be appropriate for a 400- to 800-word column. I can only offer you this: the knowledge that others are seeking comfort, and that it’s OK if you need to as well.

I see you. You’re not as alone as you think. Hold on tight.


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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

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