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Why I Never Stopped Writing After My Rare Diagnosis

Michelle Cecilia Joo
woman writing in a notebook with a cup of coffee on the table

Tonight, I sent another raven to the north. But where are other ravens that I’ve released?

I wrote this line in a poem called Sending a Raven which I expressed my desire to study again as I did when I was in Canada. I was planning to return to study in January. However, when my plans of going back to study was delayed to May, I was facing another disappointment. The walls of my heart have been torn apart, so I sat down on my chair, picked up a pen, and started writing this poem. Raven, in my poem, was another opportunity lost and never returned.

When I started to face difficulties in coping with my trauma, I started to write poems in high school. This hobby of expressing my hardships and sufferings allowed me to cope with my mental health. It was also a way of allowing myself to express my desire to forgive those who have abused me. Poetry was my greatest companion during my adolescence, and especially when I am fighting alone.

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I experienced my greatest hardship when I came to my home country to recover. In a place where I did not know anyone, I did not know how to cope with my condition, nor did I know how to interact with others. When I had these horrible feelings in my chests, I picked up my pen and wrote whatever I was feeling. I would combine my emotions with imagery, similes, and metaphors and write confessional poems. I listened to a song that fit my emotions, and my pen never stopped. It was a continuous flow of creativity and sorrow.

Even after I was diagnosed with a rare disease, I kept writing; I never stopped. I could not express these thoughts to anyone, except the disability community and my close friends. Disability was something to be hushed, something to be buried, and something to be erased. I fought with a sickening feeling every time I thought about my presence as a person with a rare disease, and my pen kept me company.

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I wrote constantly; even in my sickest days, I was writing a poem on the computer or on my journal. When I was in the hospital for non-epileptic seizures, I was still writing. When I learned that I have a genetic rare disease, I was writing. When I was worn out by the amount of stigma and discrimination I received, I was still writing.

Poetry was not merely a style of writing for me; it was a tool for me to speak when I couldn’t.

Often, I write confessional poetry and post them on online rare disease groups. When I do so, I was always amazed at how many people were reading my poems; I realized that writing has power. Writing was not merely words, but a beautifully assembled thoughts that could convey so much to others. Using my experiences, I was able to speak to others through poems that I could not do in real life.

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If you feel that you want to speak but if you cannot do so, please do not feel afraid to write what you are feeling.

Your words are powerful.

Your words deserve to be read and to be taken seriously.

Your words are beautiful, valuable, and you matter.

Today, I am still writing.
I will never stop writing.

Read more stories like this on The Mighty:

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The Balance of Parenting a Child With a Rare Disease and a 'Typical' Child

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