Thinking About Death

Don't wait for a monster to shake you out of your 'waiting place.'

Me: eating pizza at 18.

Waiting in the 'waiting-place' is Dr.Seussian soul-suicide. It's a dangerous odd, nothingness, where you're not really sure what it is you're waiting for—but that something is BIG. 

At 16 I was angry and bitter. It has since been found that actually, I was at least a little justified—my separated, never married, completely at odds biological parents had separated and started new families. I was, for all intents and purposes, a financial black-hole which had subjugated my parents to religious judgment and contempt (born out of wedlock, hurrah!) I lived in the country, I couldn't drive (I still don't drive, not for lack of trying), had two little brothers that needed constant attention, and an over-protective family. Maybe this life would have been fine, for a well looked after dog, but I was a well looked after human, and this fine species does not work well under pressure, confinement, and isolation. 

I was 16, I was supposed to be out with friends, kissing boys or girls, wandering around town pretending to be older than I was. My reality was listening to my biological father make another excuse as to why he wouldn't be coming to collect me that weekend, tearing my hair out surrounded by colicky babies trying to write a paper on modern history, and not being able to hold a conversation outside of gossip, babies, or homework. I felt like my very being was shriveling up in my post-industrial town, where people still believed Jesus was White, and going to university automatically made you a snob. 

I did, in fact, become a snob because the other option, becoming a fake-tan obsessive (which, fine, choose your weapon, no judgment now) makes me gag. It was the smell, not the people, I swear. 

I got a pretty good wake-up call. After an innocuous trip on a seemingly innocent amp wire, whereby I landed all my considerable weight (at the time) on my left wrist while prancing around the school stage dressed as the Opera singer from the 'Go Compare' ad, I was diagnosed with chronic regional pain syndrome. A neurological condition that could be triggered by the smallest of falls, which turned nerves to pain receptors. It was progressive, it was vicious and it kicked my teenage butt to the curb. 

Jokes aside, my story is one that needs to be told, because when you are faced with a future that is laced with razor blade, bone breaking pain, you automatically understand what it means to live. Before CRPS, I wasn't living. Jostled from my grandparents to my own home, to my father's house, all with differing but no less strict rules, and with intense pressure to succeed, I was, without a doubt, just waiting. Waiting to be picked up, waiting to go to school, waiting to go home, to go to tea at grandad's, to go to my father's. Waiting for the call from my father to cancel the weekend. Waiting for exams. Waiting for the future. 

Suddenly I wasn't waiting anymore, I was in the eye of the storm. I was jolted into the present. I was sick, I was so very, very sick, and I refused to go from one confinement to another. 

Before I was diagnosed, a doctor suggested institutionalization, they thought I was psychotic, depressed. I couldn't sleep or eat properly, my wrists felt like they were fractured, bits of bone biting into my skin from the inside. The disease was invisible, and it would only get worse. I was put on anti-depressants, though shockingly I was not depressed, and finally, a plethora of pain medications arrived along with a train of so-called specialists who did more harm than good, as the diagnosis finally became clear. 

I was now in the category of outsider, my experience of my late teens would never be one where I snuck away from my house to party with friends, or planned inter-railing in late June. I needed full-time care, my mother had to give up her job. My father's support during this, was as you can probably guess, non-existent, but my mother's husband stepped in as gallantly as could be expected—he is, without a doubt, the father I was lucky to gain. 

During this time, a few things became clear: I was a grey presence in my own home, my family found the illness difficult to deal with and this came with repercussions for my relationship with them. The pain was getting worse, I refused to live as if my life would be laced with this body and mind-eating fog. I could not stomach the side effects of toxic drugs that I was either resistant to, or found intolerable. I was spiritual—growing up in a Catholic country meant that the narrative of life's journey is one that reaches an apex in the afterlife, heaven. The spirit or soul is eternal. I, myself, am not Catholic, but never did I become so sure that there was something more to me than when my body and mind began to disintegrate, but a little flicker of hope did not.

I would wake up in agony, screaming, not remembering my name. I would shout and curse at my mother, imagining her to be a shade of my nightmares. I drifted away from friends at school. I gave my siblings the barest glance of attention. I was more ghoul than ghost, a heavy existence, dragging everything into the chaos that reigned in my body. I was told to give up hope of a normal life by medical practitioners. I would have to compromise my future. I would be classed as disabled and would be unable to contribute to the labour force in any meaningful way. 

I decided, quite simply, and beautifully, that I would die. Flaunting the laws set by a hypocritical constitution, I would go to Dignitas, and I would at least give my loved ones the value of my choice, and a death in dignity over a life spent in undignified pain. The summer I turned 19, I thought, 'That would work.'

Could the doctors have not listened, or done more? I grew up with my grandparents, my grandmother was misdiagnosed as insane for 19 years until finally, they realised she had MS. You'll note I just about escaped a similar fate. Not much had changed in forty years, and I refused to leave my life in the hands of a medical system that had scarred my family and the following generations. 

Taking myself off all medication (I was rather jumpy and did it one go, not realising this can cause heart failure or a plethora of bad things—weaning oneself off medications is a much better option), I began working out, I ate cleanly, healthily. I took time to speak with my parents, play with my brothers, I did as much as possible for school and left it there. I didn't stress. I went out with friends, even got a boyfriend.

Oddly, it's easy not to worry as much about supposedly incurable diseases when your days are numbered. 

The pain had spread from my left wrist to left arm, from right wrist to right arm and now it was feeding on my legs. Better off without the medications, but far from better, I was taking my time to enjoy the people around me, to enjoy a normal life. Put simply, I was out of the waiting place because I had been given an ultimatum, and I made a choice. It didn't matter that it was unfair, that I was young, it didn't matter that I had little control over my circumstance, all that mattered was a choice, one simple choice: live with this, or die at peace.

Refusing to allow my life to be dominated and directed by what I believed to be a foreign force within me, was a practice of Heideggerian standards: by choosing my own death, I chose freedom. I chose a release for my family, and at the very least, only good memories for my friends. I chose a life where maybe I was not present, but where I knew my loved ones would be able to flourish without the swollen, colourless ghoul in the front left bedroom. 

I laughed, I had fun. I was open and caring and friendly—there wasn't any time to be betrayed or disappointed, so I may as well let myself out. I cut contact with my father, his presence had been toxic for too long. I made my brothers laugh, and was sometimes 'with it' enough to babysit so my parents could go out on a date. I joked with teachers and enjoyed the sun on the school driveway, the fizz of Fanta beside me, and the scent of L'oreal shampoo hanging in the air from passersby. I would die, I decided, the summer I was 19. 

I don't think I can ever describe the flickering memories of this time, or what it was like to live through it. What I can do, is tell you this part of my story and hope that you can see what it means to live by thinking about death. 

Dying didn't quite go to plan, and I find myself doing a Master's in philosophy, in a top ten university, in a new country—at 23. I am madly in love, I delight in being with my family and brothers—it turns out cutting out a toxic parent meant I had more time and love to give to the family that was there for me. I have more friends, some lifelong already, some fleeting, and all beautiful people that I have had the privilege to meet (and some even wear fake tan). I get stressed, I go on silly diets, I forget sometimes that I came through something that tested me so—and in those moments I still refuse to go back to my waiting place. I can plan now, in fact, I love planning, but I will never forget what it means to have life taken in all but the barest meaning of existence.

I was cured, and someday I'll tell you just how, but the point of this recounting is to say that when the chips are down, and the choice to live life as you want is taken from you, by force, by a plot-twist in the ramblings of life, or even just by taking hope—it might surprise you that thinking about death only adds value to life. 

Slow down, breathe in the hot summer air as a breeze tantalises your taste buds through the scent of barbecue or fruit trees. Notice how the light reflects against the hair of someone you love. Feel the roughness, and small friction of concrete as you slip off sandals and relish in the touching of skin to Earth. Make the effort to laugh with the people you like, the ones you love. 

Don't be stuck in the waiting place, don't wait for a monster to scare you out. Relish in the life you've been given by taking joy from the moments you live through. It's not just you living them, become a positive force, set yourself free—think about death and in doing so, live your life. Live to your best ability, because living is the only ability that matters. When we die we still remain a part of the material of life, whether that is made up of the memories of the people that knew us, or physical traces we leave. 

Thinking about death at 23 are the moments of thought that define how I live my life every day, it reminds me that I am four years over a self-imposed (justifiably) limit, that I am alive because I understood the value of a singular ability to live gratefully, patiently, kindly and openly with the greatest motivator of all—death. 

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