I have had a slight obsession with death and dying for as long as I can remember. I wasn’t the slightly creepy kid who killed wasps by catching them in a jar with twink on the bottom and then lined up their corpses on the windowsill next to her desk to dry in the sun. I was the kid who didn’t mind sitting next to this kid.
I was the kid that loved all things science and nature. The kid who was happy to collect dead things to preserve in jars or bury so I could help in their later resurrection as skeleton creatures. The kid that didn’t think it was odd if her brother choose to freeze his long living and much loved pet frog at its death so it could be preserved at a later date. The kid who relished walking through the biology storerooms of the national museum looking into murky jars of specimens. The kid who organised funerals for butterflies. The kid who at ten when asked to do a school project on ‘anything she was interested in’ presented a ‘Egyptian scroll’ on the rituals of death and gods and manufactured a two dimensional art work of a sarcophagus decorated with roses chocolate wrappers and glitter.
I wore pink. I did ballet. I wanted to be an Egyptologist…
then a Archaeologists …
then a Palaeontologist …
but when it came down to it I chose an Information Management Degree over Mortuary studies because I didn’t want to wait for the next application period. What was I thinking?
I do not remember a time when I didn’t feel close to death. I was a healthy child with no reason to feel this way (other than an over active imagination) and yet there was something deep within me that was fascinated with the impermanence of all life. I was convinced I wouldn’t live past the age of 19. It wasn’t in a morbid ‘I will have to kill myself or die doing extreme sports’ kind of way. It just felt like a fact. Thank goodness it turns out it wasn’t.
I sometimes wonder if this fascination was a deep knowing that I would end up in this situation. That some how I sensed the thrumming of illness just below the surface. So here I am, no closer to death than anyone else and yet constantly aware that the end is near. Living in a kind of limbo with a body that wants the drama of a fast track to living like an unwell elderly person and yet not qualifying as a pensioner.
There is not much information out there on the morbidity of Dercum’s Disease. Mostly just things that are hinted to, like drowning in your own lymphatic fluid or dying of ‘complications’.
“Died of complications”… like my body tripped, tangling in an unravelled ball of yarn and in all the excitement forgot to breathe.
I am likely to be the complication that kills me. When everything hurts and there are tumours growing everywhere, when your brain stops working clearly on occasion or sends you into spasms, when you have searing pains that double you over and make you want to puke, how do you know when to seek medical attention or just put it down to another day at the office?
So, chances are I will ‘die young’ and not at the 420 years I maintained would be enough as a teenager. This does not bother me. I’m not afraid of death. I am a little afraid of pain. But then how much worse can it get? I’m fairly confident that the next level up is the type of pain that makes you pass out and well, I would be passed out so no need to worry?
‘So why the heck are you telling me this?’ I hear you wonder.
Well, like everything in my life, if there is a project to be made of it I’m there with bells on. So here it goes.
So I am dead …
A project in which I explore what I wish my death and the disposal of my body to be like.
And because everything needs a beautiful container I‘m creating a handy dandy cheery folder to keep all my final instructions in. There will be pictures!
Love B xox