Tuesday, 24 May 2016

Playing the Protector


aka old habits die hard...


I recently got an email from my sister about my recent posts.  She was rightfully concerned - not about the content like I expected, but that I was holding back in efforts to protect the people I love and care about from... I don't even know what... sadness? bad feelings I suppose.

It's a lifelong habit I've picked up from childhood.  I do my best to prevent worrying my parents, my siblings, my friends.  As a result I've tended to bottle up my issues and shoulder them myself.  I guess the shape of my back kind of reflects that, ha!  

I always thought I was doing right by everyone that way.  They didn't need to know every time it hurt.  They didn't need to know that every new pain sent me into a panic.  They didn't need to know I was scared for my life.  They didn't need to know I was planning my funeral in my head.  They didn't need to know I was scared of being alone.  They didn't need to know every time I felt my skeletal structure shift a little bit more and another rib popped further out of my sternum.  They didn't need to know how winter truly terrified me.  They didn't need to know about my internal debate about euthanasia and my fear of the increasing pain as my body gives out under the strain of my twisted spine.  They didn't need to know how I often felt trapped in my own body.  They didn't need to know that I felt ugly and unlovable and unwanted.  They didn't need to know the depth of my rage at well-intentioned comments, at my own struggles, and the treatment of the hundreds of thousands of others with disabilities.  You get the picture...  Turns out though, I was wrong.  I wasn't doing right by anyone least of all myself.  I realised the depth of the problem when I realised how in the dark I had left my little brother.  He and I are very close so he knew something was wrong and I was struggling with stuff, but never knew what.  I think he found out about my prognosis from me telling my best friend with him in the room - I had kind of assumed that my parents had talked to him about it.  It was pretty upsetting.
EDIT: I just asked him about this and he recalled that when he was a little kid Mum had said to him that I might not live a very long time and him being a kid was like 'ok' lol.  This is complete news to me, but I'm glad that there had been at least some cursory discussion.

Since then, I've tried to be more open, though at the same time I don't like to talk about it too much because it can still be triggering for me sometimes, and I still feel guilt when I see people's eyes well up or just sadness.  I know I shouldn't, that my loved ones deserve to know the truth, but that part of me isn't always rational.  I try, but old habits die hard sometimes and I fall into that old pattern of putting on a brave face and trying to exude positivity, which is what I noticed in my second death and disability post, which is why I added that extra paragraph.  I also realised I still do it, when my little (or rather, younger - he's actually bigger than me lol) brother mentioned that he nearly commented on my first death and disability post that he'd had no idea that I nearly died when I had that awful chest infection that brought on PTSD.  

I think it's a pattern of behaviour common for people with congenital disabilities at least, though I can't really speak for anyone but myself.  That feeling and fear of being a burden on others and wanting to avoid making the load any heavier by adding emotional and mental crap on top.  But it doesn't help and in some ways my recent posts and the responses I've received from family and friends have helped me realise that even more.  I have wonderful people in my life and I owe it to them to trust them enough to share the load.

And to those of you who are reading this.  Thank you from the bottom of my heart <3 p="">



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