In Search Of Lost Time

 What was once measured in ordinary intervals - morning light, a hurried meal, a passing conversation - is now stretched, broken, or stolen altogether. To live with chronic illnesses is to inhabit a different chronology, one that does not run parallel to the world's clock but winds inward, folding back on itself, darting suddenly sideways… eluding capture. Days blur into each other with their quiet rituals of medication, fatigue, treatment; infections and viruses blur them altogether. Moments slip away, half-lived or never lived at all.

I find myself perpetually searching for the time my conditions have taken. The hours when the body refuses to rise, the weeks tethered to a dialysis machine, the years altered in their trajectory by illness, surgery, or recovery. 

There are triggers - places, songs, fragments of conversations, that call up visions of another self - a life imagined, sometimes half-begun. It is not simply nostalgia, it’s an awareness that time itself has become fragile, and easily misplaced. In those split seconds of remembering or imagining it feels like a sinking… a mourning for a parallel life that from the moment I was born, continued on another path. I grieve those paths: a never-ending series of ‘sliding door’ moments at the time of each missed party or life-changing diagnosis.

I am always chasing after what might have been, gathering the scattered threads of my hours, and trying to weave meaning from the fragments.

Yet, in these searches for lost moments, both big and small, comes discovery. 

To be forced out of the world’s tempo is to notice its subtler magic… A quiet afternoon watching the sun from my garden or meandering slowly on the seafront reveals textures I might have otherwise rushed past; a single intact hour, free from lethargy, gleams with a brilliance that ordinary health might never grant. 

I can spend a stretched hour watching the sunlight, or moonlight, glint off the rippling waves; watch pale oranges turn electric pink as the sky erupts into a fleeting moment of colour and hope. I hold on tightly to these. 

There’s a strange and serene peace in the slowing of time; the world rushes past on its many endeavours: high octane, high blood pressure, fast pulse. Mine however has slowed, I’ve found a secret club in amongst the frenzy. My body has found a new quiet rhythm with the waves. 

I live in search of lost time. Not only to mourn it, but to reimagine it; to render absence into presence through the act of noticing it, and embracing it all. 

April 2026 

A return; and the biggest body chaos of all

Almost a year ago to the day I had the mother of body dramalamas. I've had many body meltdowns in my life - but this was a whole new level of cHaOs 

On May Day 2025, (while Hastings danced and revelled at Jack in the Green), my transplanted pancreas and duodenum (small bowel) decided to detach themselves from my body, die, go necrotic, and spew infection and bowel contents into my abdomen. I was ambulanced from Hastings to Cambridge (| remember the blurry blue lights flashing across the van's ceiling getting fainter and fainter as sepsis took hold), where I underwent three big emergency operations. They had to remove my now dead organs (a blood clot, they suspect), get all the infection out, then re-attach and re-design my digestive system.

I was kept unconscious between operations, where I spent almost 6 weeks trapped on another planet of intense, terrifying and upsetting delirium: scenarios that feel so real, totally inescapable.

Between tripping out, I just remember pain, tears, and lots of enthusiastic physios, often merging with the false and scary reality inside my head. 

I ballooned up to a million times my size, all fluid from the drips and IVs and magic potions working hard to keep me alive (so many machines.), the fluid unable to be dialysised out of me for nearly 6 weeks because my heart wasn't strong enough to cope. (I still needed dialysis throughout all this... they opened me up three times, could've squished a new lil kidney in for me no? 😇) I had to wear gigantic maxi incontinence pads on my wrists for weeks as every few seconds water droplets would drip out of my many many IV puncture wounds. I still have scars from where the dampness mixed with the dressings would tear my skin. 

I spent 7 weeks in intensive care, a fever dream.

Two weeks then on the main ward before going to live with and be cared for by my parents for another two months near the hospital. I started a new dialysis centre (no rest for the wicked…!)  and

began the long journey of re-learning to walk again

It was A LOT, pals. My open wounds have become new scars, my muscles are returning slowly, St Leonards hills are both my saviour and my nemesis. I've always known life to be short, a silver lining of growing up with a life limiting condition, but l've never had an experience where so clearly afterwards have I felt the shimmering fragility - both terrifying and beautiful - of life, and the need to really search for joy whenever and wherever I can.

Now home, I stare out to sea and breathe in cold air to the bottom of my lungs, and hope so much this feeling stays with me. I was told if I hadn't gone to A&E when I did, if | left it until the morning, I wouldn't have been well enough to have the operations.I wouldn't be here right now. I'm so thankful to my parents, how insanely lucky l am to receive this love and care from them. They're amazing. I thank our national fucking health system, the best thing we have: my nurses and docs and surgeons and so many many more who make up a team - everyone it takes to bring someone back to life from the brink and enable them to get home, live, hug their cat, and scream their soul out across moody waves. Addenbrookes is truly a fantastic place, once again Frankenstein-ing me like the G's they are. Seek out joy my friends :)