Making Peace with Death

This post doesn’t sound likely to be as upbeat as most of those on this site, right? Well, don’t be so sure. I ask you to humour me and see where this goes…

I am writing about death today because lately there has been a lot of it going around, especially on the PKD facebook forums, and because I’ve recently come under scrutiny for my apparently risky behaviours. I am perfectly happy riding my bike downhill at over 70km/hr. I am not deterred by riding in traffic. Sometimes I brake late, take corners too fast and overtake too wide because I am naturally clumsy. But still I am not afraid. I’ve hiked an active volcano and a moving glacier, rafted over a 7m waterfall, sea kayaked in terrible conditions, swum in crocodile territory waters… the list goes on… Challenging myself is what I do.

I have had run ins with death quite a few times. My parents tell me that there were times when I was hospitalised with Nephrotic Syndrome that they worried I would die. I have spent a lot of time in and around hospitals, have witnessed fatal accidents, lost teachers and close family members, and spent the best part of two years wondering if my sister was going to die after she suffered a brain haemorrhage. There were times, in my teens and twenties when I suffered depression so badly that I thought I wanted to die. And even now, sometimes when I fly, or swim in the sea, or engage in risky activities, I still imagine how things would unfold if this were to be the day I die.

I fear suffering but I don’t fear death itself at all. Maybe when that last moment does come, if I am even aware of it, I will be terrified. Perhaps being so often in contact with death has desensitised me. Either way, I’ve long ago made peace with the idea that death is inevitable. It will come. I see that peace as a gift that gives me the freedom to do anything I choose. Appreciating my own mortality motivates me and heightens my experience of life.

I once passed out, due to heat exhaustion, whilst playing golf. As I started to come to there was this unforgettable moment where I could hear my father calling me back to consciousness and yet I was aware of not wanting to wake up because I had entered this state of the most wonderful chilled out bliss! It was cool and so very calm, peaceful, restful, happy… there isn’t actually a word to describe it. I like to believe that’s what death feels like. I’m not religious so don’t believe in any sort of afterlife or heaven. I just suspect that dying feels like passing out; only you stay there, in that awesome feeling of total relaxation. It isn’t this idea of death that makes me ok with it though.

My acceptance of death even pre-dates my diagnosis with Polycystic Kidney Disease. PKD will not directly be the death of all PKD sufferers but this condition certainly brings death to mind from time to time. Many of us will die of other causes before PKD takes us. Some of these causes may be associated with PKD and some may be completely independent. Live long enough with PKD and one way or another it will get you in the end. But what really resonates with me is the fact that whether or not we have PKD makes no difference, because everyone dies of something in the end. Life itself is a terminal condition! Given the reality that everyone is dying from the day they are born, the only difference with having PKD is that you know for sure that this is one thing that WILL kill you eventually, given long enough.

The only things that do scare me about death is the idea of any prior suffering and the effect that death has upon others. When I ride with my cycling group I occasionally catch myself riding dangerously due to being a beginner, lack of awareness or just early morning absent-mindedness. Those moments of realisation sometimes chill me as my imagination plays out what might have happened if I had fallen in the traffic in that moment of stupidity. The thoughts and feelings are never about my experience of death; what it would be like to be me in that instant. Instead, they are always filled with the horror of witnessing such a fatal accident, through the eyes of my cycling mates. I don’t fear death because it might happen to me, I fear the act of dying in front of someone else and messing them up for life! I don’t brake around corners and down hills because I might die. When I brake I ASSUME it’s out of self-preservation on a natural and subconscious level, but consciously I am acutely aware of my fear of endangering the lives and wellbeing of others. When I’m daydreaming, or in my own little world, I take more risks. The exhilaration of speed, and pushing myself, makes me feel so incredibly ALIVE! Selfishly I often choose to embrace that feeling. I don’t mean to but sometimes I scare people in the process; people who don’t understand why I don’t seem concerned that I might crash and die. Why I don’t take the same precautions they do to protect themselves.

A few months ago we were out on a steep hilly ride and it started to pour with rain. The sharply winding roads down Galston Gorge can be treacherous at the best of times but in the rain they were slick and any person in their right mind could be expected to ride the brakes the whole way down with the utmost care. However, that day I rode down that gorge before the group and faster than ever before. Why? Because in an instant I realised that there is a steep drop down the side of the road, and that, even in the dry, if my brakes were to fail I would not be able to stop and would crash and quite likely die. In the wet this was even more certain so I resolved that on this day, no matter what, I would either live or die during a wild ride, having a wonderful time, doing something I truly love. In that moment the beauty of the landscape, the fresh smell of the wet eucalypts, the chill wind and the sharp rain made me feel so alive that I made a deep peace with destiny. I gave way, I let go and I let fate decide. Letting go of fear gave me the freedom to relax and be one with my bike, the road, the rain and all that was around me. These moments are a beautiful gift and the greatest feeling. To just let go and flow is euphoric. To me; that’s life at it’s most sensory, intense and exhilarating.

There is a saying about not wanting to die as a perfectly preserved corpse but rather skidding into the grave sideways, battered and bruised yelling “Wow, what a ride!” This is the idea I live by. Why compromise life in trying to keep oneself ‘safe’ from death? I fear a slow, painful demise so much more than going out in my sleep or in a blaze of ‘glory’. Frequently I read the stories of PKD sufferers of my small stature who cannot walk because they cannot breathe due to the size of their massive diseased kidneys pressing against their lungs and diaphragm. As someone who has lived for physical activity their whole life, the thought of not even being able to breathe/walk sounds like a fate worse than death. I cannot fathom how these victims of PKD suffer so – in constant pain, unable to eat, unable to sleep, unable to move. Degenerative conditions where your awareness stays intact have got to be the worst kinds of torture. No one should suffer like this.

When you can no longer run nor walk, climb mountains, ride a bike, rest peacefully nor even eat, laugh nor cough; when the joy is taken from life and replaced with only misery and pain… surely this isn’t life? Watching, day by day as disease robs you of each and every one of the activities that gave your life meaning, that sustained your soul and built your sense of self… what type of distress must that be? PKD isn’t the only horrible condition around but it can be truly horrific and that’s what scares me; the possibility that I may be watching from the inside as I slowly lose myself; one piece of joy at a time. The policy in Australia is not to risk the removal of functioning kidneys, even if they are grossly enlarged and destroying a person’s quality of life, because surgeons pledge to ‘do no harm’ and operating could risk the person’s life. I fundamentally don’t agree with this policy and have pledged to fight it all the way if my condition does start to deteriorate to the point of risking who I am. In the meantime, this situation gives me a way to at least explain WHY I take risks, go on crazy adventures, push myself to my limits. Understanding that time is running out (regardless of PKD or not) makes every moment of life all the more precious and sweet. I refuse to squeeze the brakes on this one wild ride that is MY brief time on earth.

 

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