I’m feeling rather dishevelled and slightly gnarled, and I’m tired of trying to feel okay. It feels like there is no room to be me, like life is a game of pretend.
I pretend that meeting up for coffee or lunch at that cosy cafe is a piece of cake when, in reality, it is so draining that it is the only thing I can do that day.
I pretend to be all right when you ask me how I’m doing, even though the air feels thick as honey, eating is a struggle, and my whole body hurts.
I pretend you get used to it. That you just adapt to the decline and roll with the punches, but often I feel too sick for life.
Cystic fibrosis is hard, exhausting, and ugly, and I think I’m trying to protect everyone around me from that ugliness. It’s hard having your lungs and body fail and knowing that no matter how much effort you put in to keeping healthy, eventually it just won’t be enough.
I never wanted to get stuck in this game of pretend, lying to people, saying that it’s easy, or that it’s not vehemently scary or painful – because it is. But it’s also hard not to feel guilty for the stress I put on other people. So I’m trying to be strong for everyone else by hiding my truth.
Deep down, I understand that this isn’t a winning strategy for life.
So I learn, forget, and relearn that silence doesn’t protect me.
Unexpressed life is very painful for myself and those I love.
In these moments of realisation, I often find solace in the words of poets who have also grappled with deep, unspoken truths. Anna Margolin’s Drunk from the Bitter Truth resonates with me deeply. Her words seem to capture the essence of what I’m living, transforming pain and darkness into something almost luminous. She writes:
Dos tunkele, shvere, farbroykhte, vos farshemt mikh tog oys un tog ayn, vel ikh durkhglutn, durkhblutn, durkhloykhtn, farvandlen in eydlstn shayn. The dark, the heavy, the used up, shame me day in, day out, I will burn them through, bleed them through, blaze them forth, and transform them into the most delicate glow.