Saturday, 12 March 2016

Grief, Loss, and Disability

My last post seemed to strike a chord with a lot of people and I got a lot of feedback on social media about how much of a learning curve (and difficult process) it is to be kind to yourself and forgive yourself when you run out of juice to follow up with the plans you made when you felt more energetic or simply overestimated your energy levels.  This made me remember something a counsellor told me a few years ago as I struggled through PTSD and various other mental health issues directly connected to my physical health and disability (one day I will dedicate a post to the often overlooked comorbidity of physical disability and mental illness, because hoo boy that's an adventure and a half.) that I wanted to share with you.  But first a bit of back story...


I was born with multiple disabilities not limited to profound hearing loss and a still as yet undiagnosed disability of "skeletal abnormalities" (my joints are weirdly put together basically).  None of these stopped me from doing much (although I'll be honest, I milked it for all it was worth to avoid my least favourite subject: sports and physical education - Sorry to all my former teachers!).  My parents were protective (Mum a little more so), but also did whatever they could to make sure I could do anything able-bodied kids could do and not be inhibited by my disabilities (dad in particular was my strongest advocate in childhood) so it wasn't until I developed Scoliosis in my teens that I was really affected and inhibited in my ability to do things, mainly due to pain and restricted lung capacity.

[Image: charcoal drawing of human silhouette looking out of
a window.  The picture depicts loneliness and isolation.
Credit to Camilla on flickr]
It was a big shock to the system and I had to constantly relearn and readjust my parameters for energy management.  I'd get invited to parties and school events and all sorts and had to constantly either turn them down or bail at the last minute as I realised I couldn't manage.  Hardest hit by my sudden physical restrictions was my emotional wellbeing.  What was formerly extreme shyness and lack of confidence due to bullying in primary school and in my first year of secondary school (which lead me to change schools), progressed to undiagnosed full generalised anxiety disorder and social anxiety due to a combination of the social isolation and my voice becoming even less audible in social settings due to lack of lung capacity to push sound out.  My barely audible voice made talking very tiring and awkward and isolating as fewer and fewer bothered with the frustration of trying to hear me in loud surroundings, and panic attacks at the prospect of going out and dealing with it were not uncommon.

The worst part was in Year 13 and the year after high school when all my high school friends peeled off to university.  I was not able to go to university as I did not feel like I could cope on my own.  I stayed at home and attended the local polytech while all my friends were dispersed around the country.  I was not confident at driving so I couldn't go visit them and I felt like a failure by not being part of all the rites of passage all my friends were going through.  While I was doing what I wanted at the time, I still felt very inadequate and struggled to make new friends.  Loneliness and (thought I didn't realise it at the time) depression were very present features of my life.  This only got worse when I was told I would not be able to complete my polytech diploma and focused myself on studying for a different diploma through distance study.  Obviously this didn't help much with social interaction and making friends, but for me, it was better than sitting around home doing nothing.

Why am I telling you all this?

Trust me, I have a point.

When things really took a bad turn in ways I prefer not to discuss here yet, I sought the help of a counsellor.  While I was there for freshly diagnosed anxiety disorder (though I realised I'd been struggling with it for a long time as mentioned earlier) and PTSD, she helped me realise I had mild depression and pinpointed that I was grieving - for the able-bodied "normal" lifestyle and self I'd hoped to have been living, and the socially acceptable body I never had and never will.  This was a mind-blowing revelation to me at the time, having only ever associated grief and loss with the death of loved ones.  This revelation made a huge difference to my outlook and my ability to cope.  I gave myself permission to grieve, to feel sorry for myself and go through the emotions.  This was me being kind to myself.  I became more accepting of my disability and more in control and able to cope.

As I got more on top of my emotional wellbeing, my physical wellbeing improved somewhat too.  While my condition is still a degenerative one, I've been able to gain some independence, moving out of the parental home with a lot of support from friends, family, and support services.  I'm at university studying about a decade later than my high school peers, but honestly I'm glad for it.  Had I been able to go straight to university from high school, I would not have gone into the major I'm now so passionate about and would have wasted a lot of time, money and energy racking up a student debt on a degree I wouldn't be using.  Going to university right after high school might work for others, but it wasn't right for me, and it took me a long time to realise that that's perfectly fine.

My grieving isn't over and I don't think it ever will be.  It's an ongoing process and not linear at all.  Every now and again I need to let myself feel sad and throw a pity party and wish things were different (though to be honest, a lot of the time it's more that I wish society was more accommodating and accessible for myself and others with disabilities as opposed to wishing I was different).  But I don't fight it anymore.  I know the best thing to do is forgive myself and let me process it.

I share my story because knowledge is power.  Realising my emotional pain was grief allowed me to accept my life and my disability and I urge you too to consider whether you're grieving for a hypothetical you and life that never was.  Be kind to yourself and let yourself process it.  Feel free to drop a message on here or via one of my social media accounts if you need someone to talk to about it too.

Kia Kaha (Be strong) my friends.

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