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Tag: loneliness

Cystic Fibrosis

The air we bear

Saturday the 22nd of June, 2024

When I write more extensively than just notes about my day or health, I often delve into the depths of my spirit, my feelings, and my thoughts. This time I want to explore what’s happening in my physical body as well. However, the two are so closely intertwined that I cannot write about my body …

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Cystic Fibrosis

Voilà, regardez-moi

Saturday the 27th of April, 2024

You might occasionally find me looking quite despondent, and it’s not just due to the typical dreary weather or the dismal state of the world. It’s the overwhelming effort each breath demands that tends to dampen my spirits, despite employing every strategy imaginable to manage daily life. Sleep rarely offers respite, feeling as taxing as …

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Cystic Fibrosis, Ponderings

Echoes of loneliness

Tuesday the 28th of November, 2023

Earlier this autumn, I was fortunate enough to experience Luke Jerram’s Gaia. Beneath the glow of the globe, every breath was a testament to both actuality and resistance. In that moment, loneliness was not just a feeling, but a palpable presence, a silent companion as we hurtle through the cosmos. Gaia’s presence served as a …

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Cystic Fibrosis

A page too white and ink too thin

Wednesday the 16th of November, 2022

I shift through phases where I feel the need to describe my world, because living in an undescribed world is too lonely. I’ve spent so much time grappling with this disease, and naturally, it has shaped me. Yet, I can’t quite suss out how to integrate the complications of it into the world around me. …

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Cystic Fibrosis, Ponderings

April is the cruellest month

Friday the 9th of April, 2021

I’m halfway through week three of intravenous antibiotics, and it’s taking its toll. I’m feeling quite worn down, and life is heavy. Sometimes it’s difficult to distinguish between the side effects of the drugs and the infection, and I can’t shake the fear that I’ll finish this course of IVs and still feel sick. This …

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Knitting, Ponderings

The life in front of me

Monday the 4th of January, 2021

A while back, they spoke on radio about how the creation of one’s identity depends on our engagement within a social context. We only become ourselves in relation to others. The negotiations to establish the boundaries of the self occur only in collision with the surrounding world. Not dissimilar to Martin Buber’s theory about the …

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