Giving myself space to breathe so I could return to writing

If you’ve been keeping an eye out for a new column of mine, even noticing the gap between my last column and this one, you might’ve seen that I’ve been absent from this website for a few months.

I didn’t go AWOL. I did tell my editors when I began to see symptoms of writer’s block and burnout taking a toll on me, so shout out to them and the whole Bionews team for being flexible and working on crip time. Working with other disabled people is the best!

I gave myself a month off, guilt-free. No pressure to write. If I’m being honest, I secretly hoped releasing that weight might somehow magically inspire the words to come. It didn’t.

The overarching “prompt” — to write about something related to living with cystic fibrosis — seems simple on the surface. After all, everything in my life inevitably relates back to my chronic illness. How can it not?

Trikafta (elexacaftor/tezacaftor/ivacaftor) has cleared up my lungs. Whereas I used to hear the mucus in my lungs crackle every time I took a breath, I can now inhale fully.

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October 3, 2023 Columns by Jennifer Chamberlain

Finding a balance between working and caregiving as a CF parent

Writing blocks and blank Word docs

Yet I sit down and find a blank Word document staring back. A hard truth: It’s not easy to be vulnerable. On the page, there’s nowhere to hide. Maybe I should’ve expected to be more burned out in the summer between my third and fourth years of graduate school.

But it’s not like I wasn’t trying to write. Like tiptoeing slowly down a dark alley, every few days I’d crack open my laptop and type myself toward corners I couldn’t bring myself to turn from.

I ended up a few times with drafts about COVID-19 and disability-related discrimination, smoke from wildfires, and the hypocrisy of mask recommendations, but they grew too big and complex for my word limits here. Any time I tried to trim a piece or simplify it, it somehow seemed to grow more complex. Writing is mysterious like that sometimes.

When I started my column — two years ago, though I can barely believe it enough to say it — I named it “Advocacy in Abnormality” with the intention to write through the difficult aspects of cystic fibrosis. After all, as one of my disability role models Alice Wong put it recently, “There may be times when activists may say some things you find uncomfortable.” I wanted to dig into the uncomfortable topics, and I have, often writing about COVID-19 even after it stopped being trendy to care about the normalization of the disease’s spread.

I don’t necessarily think of myself as an advocate, and maybe that’s my own insecurity that I have to work through. I don’t feel like I’ve earned the title yet, a feeling that’s compounded each time I get stuck. Sometimes thinking about my original intention to be honest despite the possibility of discomfort has helped me write through it.

But then, every time lately, some strange emotional rejection of what I was putting on the page would hit me. My stomach would turn and my body became heavy with a feeling that’s hard to describe.

As I’ve mentioned before, having a chronic illness means learning to listen to my body and look for signs of distress before the flares start going off. This awareness has helped me communicate what’s wrong to caregivers.

Maybe it’s something about starting the semester and getting my brain back engaged in a writing headspace. It’s easier to write when the body feels safer, so maybe I’m finally settling down; my body is unwinding and relaxing from stressors that I’m ready to start working through on the page. I’ll keep trying to figure it out, listening to my body at every turn.

Either way, it feels good to be writing again. I’m excited to be back.

Note: Cystic Fibrosis 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 Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.