Trigger warning: this piece discusses themes of chronic illness, and trauma.
When I first got sick nearly five years ago I wrote, “What if that one week that turned into seven months turns into me?” Honestly, I think I wrote it like a dare, casting my worst fear out into the world, detaching it from me. To write it down, to share it, was perhaps to conquer it.
It was unfathomable that this could happen to me - I had far too many plans to give it all up, all at once. Could I survive that despair, leaving all my dreams and hopes heaped at the front door? Could I persevere, more months, let alone years with so many symptoms, so few answers, and so little control over my fate?
Pain has never been the most painful part of chronic illness; it’s the loss, the grief, the isolation. The unnerving time-warping power of the body, as even when some seconds pass with great discomfort, time has slipped through my grasp, quicker and quicker, as if the more it unbinds, the looser it becomes. And the faster it falls.
The two weeks, the seven months, the four years, did turn into me.
Unwell, stuck.
My worst fear, the one that sinks little spikes into my shoulders and slinks around my neck to breathe into my ear, is quiet. I’m so afraid of it that I barely give it voice. It knows it doesn’t have much to say anyway. The thought surfaces from my consciousness as a greedy little shadow, the sort that pulls everything into its orbit of nothingness. I bolt from the cthought before it is given syllables. I distract myself with tasks I can manage, placing small goals and solutions in my path. But without allowing myself to consider it, I know what the weight means on my shoulders. Heavy and silent, hopeless and empty. It looms, pressing, waiting. Fear manifests as quicksand, the more I squirm the more present it becomes. The greater hold it has.
Its shadow deepens, casting true terror. It’s only a question.
What if this is it?
Life isn’t fair for lots of people, what if it isn’t fair for you, can you accept that?
How can you accept that?
To lose more than four years in the prime of my twenties has been devastating, life-altering. I had such vivid dreams for life, so many that I couldn’t possibly live them all… But, not any? Not even the smallest sweetest little ones?
I’m desperately afraid of treading a path so far from that bright light. To be a sad shell, an empty cavern of departed potential, dreams and love. Watching doors close in real time, frozen. The sickening panic as I watch Sylvia Plath’s fig tree rotting fruit to stem in front of me. Each future decaying, disappearing. Knowing how beautiful life could be, to be so close, to taste so much, for it to remain just out of reach.
And yet… I’m here, I’m still here.
Sometimes I want to shout it, to let people know it’s been really hard sometimes. I wish I shared more of that, but I exist right now, on this earth with you.
I didn’t throw in the metaphorical towel, I did, however, wave it around, like a white flag. I wanted to surrender a thousand times.
I’ve, in hollow moments, desperately wanted to concede. Came close, feebly tried. But I’ve thrown nothing away.
I’ve been there, I’m sometimes still there, but right now, I’m here. I’m still here. I’m here.
I’m not faded or invisible or less.
I’m here, solid, made of matter. My matter didn’t betray me like I thought it had. My matter, my body, was always doing all it could.
I used to revere the idea of ‘mind over matter,’ but that’s only a way to divide myself, ignoring my body’s messages until I became too unwell. It was a way to stand against the current of dark rivers, and then rage against them when I was sick. I’ve tried so hard to be well, to be happy and whole and that’s what matters.
I’m wrong to think all my dreams have been clawed away from me because I have lived dreams, I’ve loved and been loved. I’ve painted and laughed and seen sun-soaked days and the wondrous taste of a (really good) brownie after months of no sugar, I’ve felt horrible pain pass and sweet heavy sleep carry me, I’ve cried and danced, talked to strangers nothing like me and learnt so much I didn’t know existed to learn. I’ve felt gratitude, really, for the new ducklings by the park, the way my dogs yawn, and the begging pigeons at my window that don’t know how to hunt (don’t get me started on poor pigeons). I’ve seen so many beautiful things, lakes and mountains, fields and beaches. I’ve dipped in every body of water I can. Maybe all these tiny wishes add up to the weight of those big ones? I can’t be certain I’ll reach my other dreams, but how beautiful is it to have dreamed in the first place, to know nothing is for certain, except that we’re alive right now.
What I want to say, to myself, to anyone there, is that woven between all its shadows, life is bursting with simple wonder, and sometimes even more so when you’re at a loss. If I hadn’t been completely knocked down, I’m not sure I ever would have stopped to listen to my own body and to the world around me. I was often so engrossed in the last thing or next thing. Being stuck by illness has, at least, cemented me to the present.
It’s so easy to ignore what’s a given, but I’m not sure anything in life that is given can promise to stay. It’s always the tiniest most inherent parts of our worlds that are so sorely missed when lost. These small things amass to the experience of our lives.
The freedom to eat unfettered is not a given (for so many reasons). The choice to eat what we like most days is phenomenal. What a weird thing to know, only when it’s missed. If/when it becomes more available, will I no longer feel the same? Will I covet the next most missed thing? The bigger things that are withheld from me.
Maybe all loss and suffering can be a lesson to acknowledge pain and acknowledge what joy remains.
Because so much remains for me.
I can enjoy the full stretch of my limbs, the heavy pull of sleep. Revel in the safety of a loved one’s arms, dry sheets on clean skin in a quiet room. How it feels as soles slip against the slick of a trampoline, padding against cool tiles on a hot day, finding purchase against the rough bark of a tree, balancing on shifting pebbles in a lake. Toes digging into plush carpet, the grass, the sand. I can know the crickets at dusk, the tūī at dawn, cicadas in the summer, meet mornings both wet and cold and crystal bright. Witness the turn of the earth, feel the kiss and scratch of rain and sun. The smell of Mānuka, coffee, and smoke. Music, a good book, rain and candles. Hot showers and goosebumps. I can let the wind greet my cheeks like it’s missed me. Let my skin redden, ears sting, eyes salt.
I can stop my soul from paling in the shadows of my biggest expectations and colour it with the abundance of life’s tiny wonders.
People have said that I'll come out the other side, and when I do, I’ll be stronger. Pressure making diamonds, post-traumatic growth and the like. I'll walk through the depths of a valley, to finally summit, a glorious sunrise crawling upwards to meet me. Like there's nobility to illness when persevered (and overcome). That then you’re brave and strong, for being so scared and weak, for simply surviving.
I’m not sure I’m strong, I think hardship has softened me, like rock to sand, ground down over time. But I don’t know that being milled has made me any less than I was before. Rather than bouldering forcefully down one path, I want to sift painlessly through life, with life, swimming downstream and letting things fall as they will. To experience peace not from being the master of fate, but mastering how the dust settles.
If anyone has felt/feels the same, suffering against something that feels insurmountable, so out of your control, please know that life is simultaneously beautiful and terrible. Know pain may exist in this moment, but there will be other moments. And maybe you’ll notice the absence of pain or distress, as peace. That suffering is softer when you don’t beat yourself up for the uncontrollable, the past, the future or the unknown. Know that your body, your soul, that life, wants you to be well, to thrive and be happy, even if parts can’t. Life may look different to how you expected, but it exists right now for us, we’re here and that’s so amazing. Please know I believe you, that it’s been really awful and scary, and I’m so sorry. There’s so much to live for, especially when you let yourself flow downstream.
-Rebecca L
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