When Life Forces You to Pause, It’s Best Not to Argue

If I’m being completely honest — and when I started this column, that was one of my initial promises and intentions — I’ve been struggling lately.

But complete honesty doesn’t automatically equal complete transparency, and grief is an emotion so wholly personal and raw I still don’t feel ready to share the details of my struggles, and I might never be. Trust me when I say it’s been an ugly time.

What I can share is that I’ve felt stranded on an island amid a Category 5 hurricane. That’s the thing about living with chronic illness: My body feels like an island. Infections show up as invasive species and settle into my lungs like trees. They like the climate. They eat the crops.

Of course, being alone on an island in the middle of the sea means I’m responsible for this island and everything that breathes on it, including myself, which can be difficult with cystic fibrosis (CF).

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In between fighting off destructive wind gusts and making sure the chickens in the backyard — useful for both their metaphorical eggs and their company — are safe, I still have to monitor my blood sugar due to CF-related diabetes, take enzymes with meals, and attend telehealth appointments as they come up on the calendar.

It’s always something.

This time, an unstoppable storm swept into my life, resulting in an exacerbation of my cystic fibrosis. My shelter collapsed around me like soggy ashes. Everything in my body became swollen and was transformed into unusable rubble. It was a true Level 1 emergency.

Even now that the direct storms have settled, there’s still debris everywhere as my body recovers. Pine stands have fallen down. Sea turtle nests have been excavated by wind, and I must rebury the eggs by the dunes to try to save as many hatchlings as possible.

When living with chronic illness, the body collapses as easily as a fragile ecosystem of dominoes. One stressor occurs, and a chain reaction of catastrophe follows. Because crying causes my body to create more fluids, and because the fluids in my body are already thicker thanks to the CF, crying makes me cough more.

More coughing means more treatment. More minutes of airway clearance. More time with albuterol and its shaky side effects.

This is all to say, I didn’t intend to take time away from writing this column (but shout-out to my editors for being patient and kind with me as I work though this stormy summer season). I thought I’d be OK enough to write a few weeks after my personal storm struck. I knew I wouldn’t be better, but I thought I’d be able to find words.

For weeks, I watched comedy specials and slept, feeling alone on my island. I painted and forced myself to clean the kitchen, fix the broken blinds in the office. I’d sit down every couple days, open a fresh Word document, and …

Nothing would happen. No words felt appropriate. Nothing felt OK.

I still don’t feel great some days. I still feel alone, though with the help of friends, I feel less alone each day.

Then, in the last week of June, something lifted. The sky is still the color of soot, but the rain has paused enough that the canopy of trees can wring itself out. The ocean has gulped back the dregs of water draining down the hills.

With the waves receding, I can take more gulps of fresh air. My lungs have been able to dry out more and more with each day.

Focusing less on each breath means it’s easier to manage the cognitive load of checking my blood sugar, changing infusion sets, and remembering to take medications on time.

I can’t tell yet whether the storm has passed or if I’m just in the eye of it; if I’ve passed through the stages of anger and bargaining and reached something like hope or acceptance.

I can say I’ve managed to rebuild a metaphorical roof over my head following this storm and the resulting CF exacerbation. I now feel physically stable enough to start looking outside myself for answers, to start sharing the connections I find between the world and my body. I feel like I can finally see some version of the horizon again.

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.