How I use writing as therapy to deal with living with porphyria

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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, this is where I rest. On nights when sleep eludes me, I try to find a place to rest. Next to me, my partner’s warm sleeping body gives me comfort.

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

For so long I fought to survive. Now I write for a living.

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I’m still trapped in pity for a past I can’t change. A time when I tried to leap into life, only to be held back by the chains of a nameless, seemingly undetectable disease. So many times I thought I had regained control of my body, only for everything I had built to crumble in another bout of intermittent porphyria.

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

Before I had words for this disease, before I could follow an episode pattern and understand my triggers, it was indescribably frustrating, like a wave crashing into a complex sandcastle every time it is rebuilt. I had no way to prevent the devastation. My only choice was to endure the pain and keep moving forward as soon as I could. I think back to my story of resilience, feeling both incredibly heartbroken and deeply proud of my youth.

In “How to Tell a Story”, a book written by people from moth, Padma Lakshmi called storytelling humanity’s greatest superpower. “I believe this can change the world,” she wrote.

Certainly, writing has changed my life. And lately I felt the world needed a change.

As I write this, the last few weeks have been difficult after the last two difficult years. More than ever, I take comfort in the familiarity of a pen in my hands and my keyboard under my fingers. I depend on the certainty of opening my journal and the writing ritual that shapes my day.

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

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

Writing can’t prevent terrible things from happening, or dispel grief, but it can be a way to bring others together through the reliability of our experiences. Sharing our stories recognizes how grateful we are that others are with us through laughter and tears.

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


To note: Porphyria News is strictly a disease news and information site. 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 care provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of anything you 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 porphyria issues.

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