How Writing Can Change the World

Intentional or not, most of my writing happens in bed. It’s where I reflect on my day, journal my meditations, feel inspired by the words of others, and dissect my dreams.

The world begins in my bed. Adorned with luxury cotton sheets and supportive pillows, it’s where I rest. On nights that sleep eludes me, I attempt to seek a restful space. Next to me, my partner’s warm, sleep-heavy body provides comfort.

On a hard day, I find solace under the weight of my blankets. I read, journal, and use my bed as a desk, propping my back up against pillows, resting my laptop against my thighs.

For so long, I fought to survive. Now, I write to live.

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I still get trapped in pity for a past I cannot change. A time when I tried jumping into life, only to be held back by the chains of an unnamed, seemingly undetectable illness. So many times, I thought I’d regained control over my body, only to have everything I built come crashing down in another intermittent porphyria attack.

The most powerful thing I’ve done in my own healing process is write about the memories. Putting my experiences down on paper allowed me to look more objectively at what happened, with retrospective medical clarity. Anne Frank once said, “I can shake off everything as I write; my sorrows disappear, my courage is reborn.”

Before I had words for this disease, before I could track a pattern of episodes and understand my triggers, this was indescribably frustrating, like a wave crashing over an intricately built sand castle each time it’s reconstructed. I had no way of preventing the devastation. My only choice was to endure the pain and continue moving forward once I could. I look back on my story of resilience, feeling at the same time incredibly heartbroken and deeply proud of my younger self.

In “How to Tell a Story,” a book by the folks from The Moth, Padma Lakshmi called storytelling humanity’s greatest superpower. “I believe it can change the world,” she wrote.

Certainly, writing has changed my life. And lately, I’ve felt the world could use some change.

As I write this, it’s been a hard last couple weeks after a hard last couple of years. More than ever, I draw comfort in the familiarity of a pen in my hands and my keyboard beneath my fingertips. I depend on the certainty of cracking open my journal, and the ritual of writing that gives shape to my day.

In the face of unspeakable tragedy, we may feel helpless. But now more than ever it’s important we nurture ourselves in ways that give us peace and purpose. We can show others we care and want to stay connected by the simple act of writing a letter or card.

I find purpose in leading with my words, writing columns to humanize an obscure disease and, in turn, building connections in a community that too often feels isolated. I practice gratitude through sending handwritten cards and notes to others. I hope when the envelopes are torn open, it’s clear they’re filled with love.

Writing can’t prevent terrible things from happening, nor can it dispel grief, but it can be a way of bringing others together through the reliability of our experiences. Sharing our stories acknowledges how grateful we are that others are by our side during laughter and tears.

Maybe all writers hope they can change the world in some small way. What I know is that through writing, I’ve found personal healing and a deeper connection with others. Right now, what could be more important?

Note: Porphyria News 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 Porphyria News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to porphyria.