A disabled friend of mine posted a very thought provoking comment in one of my many social groups on Facebook yesterday. Something that has got me thinking big-time.
She asked, what sounds on first reading, to be a pretty straightforward question but which is, in reality, a question that has, for many of us who live our lives with freedom-limiting impairments and illnesses, a pretty complicated answer.
What she wants to know is whether she’s the only disabled person who feels really jealous when she hears about non-disabled people getting to do things she can’t do and go places that she can’t go due to her impairment or if more if us feel that way too.
Well, as far as I am concerned, the answer is a resounding, YES!
Yes, I do feel jealous and resentful, really jealous and resentful, all the time.
Don’t get me wrong, most of the time I’m pretty contented and happy with my life as it is but, just sometimes, I’d really like to spice it up a bit and do some of the things I used to love doing before I got sick. Not so long ago I had a very full and eventful life despite my MS but now, thanks to my worsening condition and to my infected pressure sores, my world has shrunk enormously in hte past two years and I am restricted to a small, single bed sized space in my house, the majority of the time. Sure, I do get get up to go out occasionally, but most of my life is now spent restricted to the four walls of my living room with only my computer, my TV, my phone, my books, my family, my carers, District nurses and doctors and some long-suffering friends to relieve the boredom.
It used to be so different. I had a good job doing something I loved, earnt a very decent salary rather than having to rely on Welfare Benefits for every penny, went out when I wanted to, spent time with my friends and relatives because I felt like it, got to plan for my holidays and my free time, visited fascinating and interesting places locally and further afield, was a lady who lunched at least once a week, did what I wanted to do whenever I wanted to do it and now, I can’t.
And it sucks.
One of my children has just had a week away, going to a friend’s wedding and then having a lovely holiday exploring Scotland and having fun, the other is planning for her next trip away and visiting friends for the weekend. In complete contrast I get to do nothing more interesting than change channel on the TV and hope there’s a film on I haven’t seen before. My children get to go out and about, go shopping, visit museums and art galleries and the theatre and go to the pictures, go to the pub, do fun stuff and I can’t. I get to experience it all second-hand but, in reality, I’m stuck here doing nothing most of the time and it’s not fair. Don’t get me wrong, I have some really lovely friends who come round to visit, bearing yummy treats to share or who phone me for a long gossip about whatever they, and their families, have been doing but it’s not the same thing. In a lot of ways I don’t feel like I am taking part in real life at all, I feel like I’m merely observing it from the sidelines. I acknowledge that is probably not the case but that’s what it feels like most of the time.
Maybe I would feel differently if I had been born with my impairment and had never experienced a non-disabled lifestyle but, as things stand I don’t know. I can really speak only from my own viewpoint and so, yes, I am very jealous and very envious of all the things other people can do that I am unable to do any longer. I would give anything to be able to feel sand between my toes once more. I would pay whatever I could to be able to walk alone through the woods with my dog, listening to the birds above me and watching butterflies and bees flitting from flower to flower. To be able to go with my friends to shows and gigs without having to consider accessibility or what time I had to be home for my carers to put me back in bed again would be priceless but, unless a miraculous cure is found for me tomorrow it’s not going to happen any time soon, if ever again. I so miss my old life and there are times when I want it back more than anything else but that’s not likely to happen.
I’m pretty sure I’m stuck with what I’ve got now for the rest of my life so I will just have to suck it up and make the best of it. It’s time for others to have fun now and I will just look on and share what they are doing in my secret dream world. That is something I will always have, whatever happens, it’s special and it’s all mine.