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 a wild night out, and breathing seems a full-time job, devoid of any perks.
Living with cystic fibrosis feels a little like being thrust unprepared onto Mount Everest, where the air grows thinner with each step. It’s exhausting, relentless, and frankly, rather uncalled for. This constant uphill struggle subtly shapes how I connect with others. And as I navigate these challenges, my needs can vary. Sometimes, a simple ‘bloody hell, that’s tough’, is precisely what hits the mark. At other times, it’s the quiet company of someone who understands without uttering a word, as words can sometimes just add to the noise.
I do not wish for those around me to overlook the reality of CF as if it weren’t a ticking clock. Nor do I desire to be treated as though I were made of glass. Pity is unnecessary, but equally, I don’t want my illness brushed aside like last week’s biscuit crumbs. It’s an undeniable part of my life, an unwelcome one. So, here we are.
Voilà, regardez-moi, Barbara Parvi implores, asking to be seen wholly and without pretence, laid bare yet defiant. It’s a declaration of existence, stripped of the filters of convenience.
Thus, I invite you to walk with me, to acknowledge the challenges, and perhaps offer some encouragement – a comforting pat, or a supportive nod. Simply recognising the harsh realities of my life, without allowing them to overshadow everything else. Without allowing them to overshadow me. Because I’m here, fiercely living and breathing, albeit not so effortlessly.
Ne partez pas, j'vous en supplie restez longtemps
Ça m'sauvera peut-être pas, non
Mais faire sans vous j'sais pas comment