Tuesday, 10 May 2016

Death and Disability Part 2

once again, this week's post comes with a strong trigger warning for discussion of death and dying.

I talked last week about my relationship with death, and the fear associated.  To be honest, I'm not scared of death itself, I'm scared of dying.  I believe in the afterlife - I'm pragmatic enough to realise that it may not be a thing, but for now, it brings myself and countless others comfort and I'm ok with that.  But the process has always frightened me, though I deal with it in my usual tongue-in-cheek humour for the sake of not upsetting those I care about.

I cope through regular counselling and careful monitoring of my anxiety levels and pain levels, as there is a clear interrelationship between my pain levels and my death anxiety.  The higher the pain - particularly if it's a new kind of pain or location of pain, the more anxious I am and the more morbid my thought patterns get.  I'm also a control and organisation queen so of course I have a will to allay the anxieties of what my friends and family will have to deal with when I'm gone, and a bucket list to keep my focus on the here and now.

I write about this because an interesting part of facing your mortality (even though I really have no idea when mine will be - how soon or late it'll be) is the way your perspective of the world changes.  Suddenly stuff that people worry about day-to-day seem completely inconsequential, meanwhile they continue to matter to everyone else, and you kind of get left behind.  So while it's freeing, it's also rather inhibiting.  It's nice to have had my fears quelled in terms of my prognosis to the extent that it's not necessarily always on my mind like it was when I was in the grips of PTSD, But in the meantime, I'm slowly working through my bucket list.  First up, is to fly a plane and finish my degree.  Hopefully in the not too distant future comes a trip to the UK!


I very nearly hit publish at this point of my post, thinking I had nothing to add to this, but having drafted it in advance I left it overnight and woke up in the middle of the night with the realisation that I hadn't been completely honest... once again, holding back to protect the people I care about if they read this.  I've always felt like I've got to put on a brave face and a positive front.  Even in the face of people who seem to associate disability with imminent death (on more than one occasion I've stared slackjawed at the nerve of an old acquaintance in the supermarket remarking "oh it's good to see you're still with us!" or "oh I thought you died!" - seriously what the fuck?!).  The truth is though, I am scared but I'm also angry.  Furious.  I've barely had a chance to begin my life, so held back by my body and its limitations, and I'm too young for this.  I need to share this because I know I'm not alone in this, and I need others to know that it's ok to be mad.  It's ok to be upset, and if you aren't then I want to know your secret! because none of this is fair and the last thing we need to be doing is wasting precious energy making everyone else feel better when you're not.  It's ok to grieve and as I go through the motions, I realise that's exactly what I'm doing, and it's normal and it's ok.  I'm ok.

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