Death Rant

Death, dying, dead. What do I even want to say about this? Where do I even start? It’s timely that you’ve asked me to do this now as I’m going through ANOTHER crappy period of health…I’ve been into the hospital only today for more tests and no conclusions yet as to why I’ve been feeling so completely exhausted. So death once again, is very much on my mind. I’ve been chewing on it and it occurred to me just last night that it’s just like that (super crap) film Meet Joe Black….where Death, played by Brad Pitt, arrives in the life of Anthony Hopkins in his finally few weeks to tell him that his time is up. And that is what my life feels like right now. Every time my health fails I’m instantly reminded that I’m on my way out. But actually it’s not just when my health ‘fails’ its everyday – when I get out of breath walking to work, when I can’t dance for more than half a song, when I slurp down handfuls of pills every morning and night, when I have to ask someone to fetch me something from upstairs because I’m exhausted, when someone comments on my electric bike as ‘cheating’, when I cancel plans, try to book insurance, have the urge to run and realise I’ve never, ever managed that, when I’m doing my makeup and notice the clash of blue fingertips against my skin, when I go to karaoke and get out of breath singing…and every single baby or pregnant tummy in the world.

There’s just so many reminders of my disease, my lot in life, my unavoidable demise. I mean…how does anyone live with this, truly?

So death has its claws into me. There isn’t a way to escape it. Definitely not. And I don’t know what to do. Every night when I eventually fall asleep, without fail, after about 20 minutes I will suddenly be jolted awake again…I mean without fail. I’d say about 75% of the time, the first immediate thought I have is of dying. Either thinking something like “I’m going to die one day, I will be gone, it will be over” or “mum is going to die – she will be gone, you can’t stop it”. Very often it is accompanied by a single tear, a lurching sick stomach and a distracting trip to the loo or glance of my phone to try to rid the thoughts from my head. At this point it takes on average another hour to sleep again, and that’s my night time routine. I know this isn’t healthy or normal, it comes from my deeper anxiety but it is also something that I remember happening quite a lot when I was a child too…sort of pre-correction surgery. So I’m back in this loop of feeling like I can’t escape it.

With my health over the last 4 years I’ve generally just been living with the feeling that I am dying already, that at any point they will say there’s nothing more they can do, or I will have a heart attack and die. It doesn’t feel good when it takes years to become well again. I told my doctor this a while back and she said firmly “no”…and then went on to say I have at least “10-15” or 15-20” years left (I can’t remember which one!) so taking her upper estimate, I should be pleased with making 50 – I’m staring down at 33 now, so…


So, what am I really trying to say? What are the key issues? I really don’t know…I can’t figure out what I need to do to get past this or why its sooooo in my head, all the time!! What is actually pissing me off the most?

Is it fear? Am I afraid of what will happen? Honestly, as a pragmatist I believe that death will feel very much like whatever was there before I was born – I will just cease to exist, so I don’t think it will be scary or painful. I think it worries me that I cannot be wholly sure of that. My grandfather had a very real (to him) experience of dying just a few years back. He was unwell in hospital, his heart arrested, he did actually die for a few minutes…eventually he was shocked and resuscitated. And his immediate behaviour was to be very angry that he had been brought back – he described looking down on himself, realising he had died and being okay with it – he felt ready and was very disturbed by the subsequent banging and crashing that brought him back. It worries me that he had that experience as he too is a pragmatist. I’m glad he was contented and unafraid in the moment. I worry that his 90 years versus my potential 50 had something to do with that, he’s lived a full life.

Is it passiveness/ feeling powerless? Absolutely…and I think this is the real angle at which the anxiety creeps in. I feel I have succumbed to/ been beaten into submission by my mortality – and that has made me passive to my life, the inevitability of it all. I don’t know how to truly live in spite of death. Is it possible to make a life in such inhospitable climates? It really sucks the energy and purpose from me and I’m totally powerless. I can’t change it and I can’t seem to live with it – what options are left? Who does my life belong to? Going back to that movie – once Death arrives on the scene, who does Anthony’s life belong to, him or Brad?

Do I feel sorry for myself? Yes, and no. No because I know that 50 years is more than some get and less than I was originally promised. And Yes, because I wonder why I was born with less of a right to life. It’s the classic “why me?” question…and there are again, many different triggers for this – particularly watching my siblings lives unfold so differently to mine, noticing their dreams and plans reflected in how they prioritise their energy and focus. Another trigger is any time spent in hospital, in bed recovering/ exhausted, dealing with medical crap and anytime I feel I have to justify myself (particularly to myself!) Of course, the hardest “why me?” was losing my baby…it’s incredibly hard to find any answer to that.

Who am I worried for? I’m worried for me because I am worried, I will be alone in death and because I will long for my family. I am worried for my family because they will feel helpless that I have gone and that they couldn’t stop it. My mum has already told me that she will never come to terms with my original diagnosis, that this happened to me – I worry that my death will cement her grief and guilt (at this point it’s looking like she will out-live me) and I can fully comprehend that she will suffer. I worry for my siblings too; they struggle to talk about my health and although now and again they will laugh at all my death jokes I know that it doesn’t sit well with them. This is something we need to address. I’ve spoken recently with my younger sister a lot more about it and it has helped, but I still sense a lot of fear and confusion in her – my older sister can barely stand to mention it and avoids the conversation all together. As I think I’ve said before, if I was to write a memoir it would be for them.

The funny thing is, if I did actually die tomorrow, I think I would be okay with it. My biggest worry is that anyone would doubt that I didn’t have a great time, because I did, I have, I’ve loved it all…. perhaps that’s why it’s so hard to think about leaving. I adore life, I mean I’ve barely left the house for four years, but it’s all still okay, I feel at the very least, content… Even with the death claws in me. Why the fuck am I so confused?!

What do I want to happen when I die? Well, in the most practical sense I want to donate any possible part of me to anybody else who’s waiting on a spare and then I want the rest of me to go to medical research. I hope that in decades to come, my brain or big toe will live on in a jar of vinegar somewhere. I hope that some eager medical students will get to prod around in me, practise their stitching and just chuck me in the incinerator when they’re done. Truly. I don’t want to be buried or cremated, I don’t want a funeral – I want a party. For any sadness I want there to be celebration, for any tears I want good stories and laughter too. And no black!

Why can’t I let it go? Am I angry? Yes…quite often. Am I still grieving the life that I have lost? Maybe that’s it, maybe that’s why it’s always so on my mind – because I’m still stuck between different worlds. The life I had vs The life I wanted vs The life I’ve got.

I have seen the torment that death causes. I have seen what grief and loss does to even the happiest and most inspiring people. I have experienced loss myself. Loss changes people, it changes lives. It breaks and mars and infects.

Perhaps the thing about dying that gets to me the most is the worry that I’m barely even living. All this time spent on illness and resting, all the things that I wanted to achieve and now can’t – I’m worried I will get to the end and feel I wasted it all. There’s a 50/50 split in me that says I am not living to the full. It’s that same old battle between body and mind – does life exist in the things we do or the thoughts we have? What’s that famous saying….“Life is not measured in the number of breaths we take, but in the moments that take our breath away.” Did I get too distracted by surviving that I missed the point of life? Maybe years of hospitalisation and growing up with this fierce focus of just surviving it’s programmed me to think that I shouldn’t die, that dying is failure. I’ve become a slave to it, that sense of positivity and drive being so intently on living….and at any cost. That survival is the only goal. I think that makes some sense… I’ve questioned a lot about how my childhood and the trauma of it has set me up really badly to cope with adulthood. It’s very far reaching – and the frustrating thing is I can’t pinpoint specific things that were done wrong, I don’t think anything was done wrong – I can’t imagine how hard it is for anyone to raise a sick child, correctly. It’s impossible to even raise a healthy child correctly! So that’s not the point then….

…so what is the point? Maybe there isn’t one. Maybe thinking about death all the time isn’t actually the problem, it is in fact just the manifestation of all the anxiety I feel about my life, with illness. It’s me grieving and hopefully one day coming to terms with the fact that this is my story. And that it is a valid story. A worthy story. And most importantly, that it is not a failure even when it ends.

Jeez, I got there…I’ve never realised that before, that my death, to me, means failure. That’s wrong and I need to work on that.