Tuesday, 3 May 2016

Memento Mori: Death and Disability

TRIGGER WARNING: This post will be about death, dying, facing mortality, and big issues like that.  If you are triggered or upset about this kind of discussion - especially if you know me personally, avoid my blog for a month.  
This is no more an easy topic to write about as it is to read about, so I completely understand if you choose to give my blog a wide berth till next month, because this month's theme will be death, dying, and disability.

I realise this is a morbid and depressing topic, but a lot of things have come up lately in my life - nothing major, but it seems to have been a recurring theme lately and despite reservations and past issues around the topic, I finally feel comfortable enough to talk about it.  Hell, I even wrote my will, and given the relevance of late, it seems now is the best time.  Bear with me, happier topics are abound in future months!

The last thing I want to do here is romanticise death or dying.  There is so much wrong with the romanticisation of mental illness and the creation of an aesthetic of suicide, depression, and mental illness, I don't even know where to begin with that.  I have a deep discomfort when I see the words 'Memento Mori' being used to be edgy.  Memento Mori for me was always a vivid reminder of my reality and of my need to do what I can with the life I have left.  The fact of the matter is that I will die.  Hopefully not in the too near future, but I'm 98% sure that I won't see my retirement years.  I've accepted that, not because I want to check out, but because I'm pragmatic about the state of my body and the reality of my disabilities.  My condition is degenerative.  It's basically inevitable that I will die younger than the average person, we just don't know when and doctors are wary of putting any more timeframes on after I kept surviving the last several (I like to think I did it out of spite ha!), and simply the fact that I'm an unusual case and they really can't predict that.

It's taken me a long time and a long process and support required to get this point of peace.   About eight or so years ago, I came face to face with my mortality and the realisation that I wasn't invincible and life is fragile.  I'd become used to the fact that I get sick at least once a year at winter, but that year I got the worst virus I'd ever had in my life.  I couldn't breathe.  I was coughing my lungs out for hours on end.  I hadn't slept more than an hour collectively a night for 5 nights straight.  I was physically exhausted and had spent one night in Accident and Emergency only to be told they couldn't do anything because "it's just a virus".  There was a point where I was completely beside myself with pure exhaustion.  Mum and Dad had taken to sleeping in shifts and it was Dad's turn.  I couldn't lie down in bed because it made me cough.  My back ached with having had to hold me up for so long and from all the coughing and choking.  Dad prayed out loud for me and started crying and holding and rocking me.  It was that moment that I realised my Dad, my unflappable in the face of health crises Dad, was scared, really scared.  I realised then that I was close to death and I was terrified.

Obviously, I got better.  My usual GP came back from his holiday to us desperately hoping for some relief and he hit the roof that I hadn't been put on antibiotics immediately as it the virus had long since ballooned to a major chest infection, which with my extremely limited lung capacity is very very bad news.  I was sick for nearly three months.  I ended up wrecking my parents' 30th wedding anniversary plans and having to go on their getaway with them because I was too sick to leave unattended but they couldn't cancel their plans.  Yea... fortunately it was basically just a family holiday with just me and the parentals, and it did me a lot of good.  I finally got used to using my bipap machine at night and finally started to really visibly recover... physically at least.

Mentally, I was shaken.  Around the same time, a disabled woman I knew and who was a client of my mother's died from complications with a cold or flu.  It threw me even more.  I started to obsess about death and constantly felt like I was going to die.  I had severe panic attacks.  I started planning my own funeral.  I got so morbid Mum worried.  I was scared about dying and every new ache and pain exacerbated everything tenfold.  I finally decided this wasn't normal and I needed help.  Mum took me to one of the GPs at our family clinic who we knew had some counselling qualifications.  She diagnosed me with anxiety and PTSD and referred me to a specialised counsellor for intensive counselling.  It made a huge difference and at the same time my physical health improved which effectively made the underlying stressors less of an issue as well (for a while anyway - but that's a tale for another day).  In this way my mental health is very much connected to my physical health.

For some reason a lot of my life it's like I didn't consider that disabled people die.  I mean obviously they do, but I didn't figure that it made sense for any of them to die any younger than the average person.  In hindsight I realise that 1) this is obviously nonsensical, and 2) completely contradicted with what I knew and understood from my favourite book where the title character died aged 11 or something from Muscular Dystrophy.  I guess younger me rationalised it that unless you have one of those terminal disabilities, you'll live through adulthood and all will be fine.  This was perhaps emotional and psychological protectionism on my part.  It's no wonder that every death of a disabled person I know or hold in regard has hit me hard.  The one I mentioned earlier, there was also another friend, these threw me.  One of my best friends (and I never told him this, and he's probably reading this now :/) had a brother with EDS.  When he died from cardiac problems connected to his EDS, it hit me pretty hard.  Then when Stella Young died I actually didn't find out until months later when I realised I hadn't seen her put anything on twitter in a while.  It was like a punch in the gut and I still get upset when I remember she's not part of this world anymore.

So I guess what I'm saying is that my relationship with death, while very much a reality and present in my life, is very complex and the peace that I'm at with it has very much come at a price and a very painful and anguishing journey.  But I feel like it would have been a lot easier if we talked about it more as a society.  It's hard enough living with a disability, it's even harder facing the possibility that you'll probably not be around to get to live.  In the meantime, I carry on kicking butt and doing what I can to help make the world a better place for those after me.  That's all I really can do.

To those who know me personally and have read through this - I'm sorry if any of this has upset you.  Talk to me if you need to.  You know where to find me.  <3

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