Here is a glimpse into my memoir I’ve been working furiously on, amongst the pain of a femoral hernia (go forth and google). I’ve not long to go before I wind up my story, so here’s a little insight into what I’ve been working on. Thank you for reading – just keep in mind that this is a first draft. My book will be called ‘Chasing Away Salt Water’.
The cure for anything is salt water: sweat, tears or the sea
– Isak Dinesen (Karen Christenze Dinesen)
For a very long time, I’ve been trying to work out where to start my story. While there is a beginning and middle, there is no end. It doesn’t make sense to start telling my story from the beginning, so I’ll start from when I began to die.
When you are dying, you leak.
There is a condition – death anxiety or death and adjustment – when the body reverts to ‘primal’ mode; a homogeneous process of ridding the body of inessential waste. Like a surrender of dignity for the dying, where one oscillates between dignity and necessity – the necessity of death – there is a simple hope pinned to your chest that at the end of this life, you can retain a part of who you were before your body began to rot from the inside out. It is the slowing down and cessation of life. We will all realise senescence and we are all going to die.
By design, the body is physiologically wired to know what it needs to do during the process of dying. The body expedites the process of draining fluid in strange ways. Here are a few I experienced before and after transplant:
Inactivity and the eventual inability to walk liquefied my muscles; withering the sinew until it began breaking down like compost. Perfect textbook atrophy.
I became incontinent and would often wet myself during coughing fits so violent, my lips, fingers and toes would turn a persistent shade of blue. I’m proud to say I never soiled myself. I could deal with piss, vomit and blood, but not shit. I wasn’t ready to have a nurse wipe my ass like a baby. That indignity could wait. This is what happens when you’re at the edge between life and death with Cystic Fibrosis –
Coughing so hard and for so long, I would vomit, fart and wet myself.
Vomiting made my eyes water and nose drip.
Too much coughing can break ribs. Broken ribs hurt.
My lungs bled and bleeds can be perilous.
Bodies discharge fluids and stink up a room. I was familiar with the stench of death and dying, but from other people – not me. I would lay in bed and think of lilies because I thought, ‘surely it can’t be me leaching out something so rancid?’
Life peels away like an onion. It shrivels, much like a hollowed out husk that cannot be fed, while the attachment you once had to your life is ladled out of you like soup. I found myself disconnected from the person I used to be. Where was the girl I had shaped into a woman from circumstance and experience?
End stage illness is not liberating. It is disempowering – akin to having your insides scooped out with a trowel and dumped in a bin. You must then crawl to the bin, recover what is left and shovel whatever goodness you find back into your body.
Death is nothing like ‘Meet Joe Black’. There is no Brad Pitt. There is no New York City. There are no fireworks or romance. There is no talking to death. There is no spare time. There is no bargaining.
Five days after my transplant, I had four drains removed from my chest. They were as thick as hoses and had been draining blood and sebaceous fluid from my new lungs. When the drains were removed, the leaking hastened. It had to be expunged, and it was urgent, breaking the levee. As I struggled to contain the flooding from my chest, my mood turned black – an odd narrative for me.
I had hoped all the leaking was over because I had survived, but the four hoses had left open wounds like crucifixes, and four spillways formed a syrupy pool in my hospital bed. And in my crotch. No matter how many pads of gauze I packed on, I leaked. Any exertion had pus spraying (not dissimilar to blood spatter) outward and down my trunk – the force behind it much like ejaculation.
I cried and swore at the nurses and whoever else was in sight because they weren’t helping me. I told them to go fuck themselves, such was my despair and pain.
The levee has broken many times since the hoses were pulled out of my chest, yet never anything like the torrent that was August 1998.