A New Understanding

Well, it’s been four months since I left Stanmore (the RNOH, Stanmore) where I spent three weeks on a rehabilitation programme, or perhaps ‘condition management programme’ would be more apt. I’m still processing the experience and trying to get my head around it. Strangely for me I haven’t, until now, written about it. It’s as though the words were whizzing around in the depths of my consciousness in unformed and unlinked bits and pieces. Once in a while a sentence emerged but it felt twisted and juxtaposed to everything else.

Yet why? Why have I struggled to write as writing is ‘what I do’? I’m exhausted physically, mentally, emotionally and spiritually. Stanmore was a wake-up call for me as it (literally and metaphorically) turned a mirror towards me, made me take a good look and left it there as I recoiled and wilted at the view. Being honest with oneself is rarely easy when you’ve been avoiding it for years so it walloped me in the solar plexus like a bull on a rampage in a very bad mood.

My sense of bewilderment and confusion intensified when, two weeks after discharge, I saw the wheelchair assessor. When I saw the wheelchair he had picked out for me to use I thought I was going to vomit on the spot. It was huge and it looked like a chair someone disabled would need. Therein lies the problem: a refusal to actually see or acknowledge the truth of that reflection I’ve been looking at.

Denial is a powerful force that can seep into all the crevices, nooks and crannies of life as it slowly infiltrates like ivy on an old building. It we’re not careful the building will crumble leaving the ivy in all its beauty. Personally I love old ruins but I’m not so keen on becoming one just yet.

So, those few months of time ‘after Stanmore’ have been a huge rollercoaster of emotion for me. I feel as though my life is shifting in and out of balance but I’ve not, as yet, any idea what this means. I feel ready to start living once again and this means facing the denial head on, breathing into it and wholeheartedly acknowledging it. I have to do this before I can accept my situation and step fully back into life once again. I need to acknowledge and accept the truth of my reflection because I am that disabled person I’ve been so desperately trying to avoid making eye contact with. The only person I’m kidding is me and it’s killing me as I hover on the periphery of a life not lived.

No one wants to be disabled or chooses such a path. I don’t want to be this way but I am. I don’t want to wear a big wheelchair sized badge that shouts out loudly ‘disabled’ to all and sundry. It’s not a childhood dream or a long-held fantasy. It’s just what happens sometimes. However ignoring it and denying it doesn’t help. It won’t go away if I bury my head in the sand nor will it change into something more palatable. Of course, this is also about perception as how I see myself matters. If I see myself as broken, dis-abled and an invalid then these shape my life. Yet, should I feel ashamed for being disabled? It’s a long-held stereotypical belief that disabled people are somehow ‘less than’, and I certainly believed that of myself for a long time, but I’ve come to realise that being disabled makes me no less of a person unless I choose to believe it.

Many of the disabled people I’ve met are more courageous, more determined and more able than most as they find ways to thrive despite the challenges they face. I’m not talking about those shining examples of disabled athletes achieving more than most able-bodied people ever could, I’m talking about those disabled people that live with their disabilities behind the closed curtains of life, doing their best and finding ways to thrive. I think the challenge of living well with a disability or chronic health problem takes a formidable amount of strength. There are of course many different types of disability but the vibrancy, passion and strength I so often see warms my heart and soul.

I’m not sure why I’ve been so resistant to accepting my reality. Maybe acceptance comes in time or maybe my perception of acceptance will change from seeing it as giving up to accepting what is with grace and choosing to make the most of it. In truth my life’s been on hold because I’ve been waiting to get better. I’ve been waiting to turn a corner when suddenly everything’s okay and I can once again get on with my life. I’ve felt as though acceptance was giving up on a chance I will be cured as that’s been easier than facing the truth. My stubborn, blindly optimistic, sugar-coated, rose-tinted view of life really does me no favours at times.

Do I see myself as ‘less than’? Hell no. Do I feel angry or sad that I can’t walk more than a few steps, use my hands, cook, dress etc? Yes, of course I do. I guess perception is the most important thing as I can see my disability as a sign that I’m broken and damaged or I can just see it as a part of me and try to get on and live my life anyway. Admittedly there are perks: a recent hotel stay for some hospital tests required my signing a disclaimer that I would remain in my room in case of a fire to be rescued. I sat up all night, but not a fireman in sight. Seriously though, I can rage all day everyday about how awful it is to be me but how boring would that become and it would, in time, cause my soul to shrink and my inner light to dwindle as I simply become the broken one. That’s not me and although I clearly have a long way to go before I wholeheartedly accept the person I’ve become, I’m curious enough to find new ways to live.

Whilst I can find ways to manage better, I do feel the stubborn, denial-driven force within me needs a punch in the face as she is destructive and holds me back from living more gracefully. Yet a punch in the face is perhaps not the best approach! Maybe my showing this side of me some love, tenderness and compassion is a better approach? My stoical, smiling, brave face attitude isn’t helping me. I’m not quite ready to dance with the happy fairy just yet nor am I about to start waxing lyrical about the joy of pain and the beauty of suffering, but I’ll settle for some middle ground.

Being in a wheelchair when I need it is not the end of my life; it’s the beginning of a new one…