When I was in the rehabilitation hospital in the winter of 2025, one of my favourite nurses said, as she removed my night-bag one frosty morning, “O, I wish I had a catheter – you don’t need to get out of bed during the night when it’s freezing!’”
I knew her well enough to know that she wasn’t mocking me; she was trying to make me feel less bad about having to be hooked up to a plastic sac, which would do its best to extract up to two litres of alarmingly orange urine from me as I slumbered under morphine. But of course, anyone in my position would give their little finger – on both hands – to be able to get out of bed, even in the middle of the coldest night of the century, and use a toilet – even a dirty one! – like an ordinary human being. She was just trying to make me feel better, but failing dismally.
I’ve experienced quite a bit of this since I became disabled in the Christmas week of 2024, and it’s taken me some time to take such encouragement in the way it’s intended; those things people say to “Wheelchair Warriors” to make us feel less freakish.
I feel gratitude that I’m a paraplegic and can move my upper body; I feel gratitude for my wheelchair (‘Wendy’) but it hasn’t always been that way. “FREEDOM!” another of my favourite nurses called encouragingly the first time she saw me wheeling cautiously along the hospital corridor; I turned on her and snarled, “Freedom? FREEDOM? Being half a person, and half a chair? You try it!” Of course, within ten minutes I felt an utter cow, and sought her out to apologise profusely.
Now I’m out, I get a lot of “You look so well!” from people seeing me for the first time since. How can I look well? I’ve lost half my body. I’m a frail old lady. What they mean is that I’ve lost a lot of weight and put some lipstick on. But no woman who once had her name under a photograph of Jabba the Hutt in a magazine really minds being told how thin she is, even if she had to be 48 hours from death to get there.
What I find more annoying are those who bring up their own troubles. To put a charitable spin on it, they may do so to make you feel that you’re not alone in your woes, but I’m afraid I find it more likely that they are drama queens who hate someone else having the spotlight of sorrow.
A friend who experienced both her ex-fiancé dying and her younger brother beaten into a coma in a short space of time remarks that people would annoy her greatly by referring in turn to some comparatively trivial trouble they were going through; “I don’t think misery is a competition but have some sense of perspective!”
Similarly, I found myself highly impatient with an acquaintance who saw me soaking up the sunshine at a street cafe the other day, sat down and began to talk about the unbearable ghastliness of her life due to her noisy neighbours. Rule one of dealing with disabled people; if we appear to be having a pleasant time, don’t be a misery-bucket and bring us down. You couldn’t possibly comprehend how much effort it took us to secure that place in the sun – and how soon the clouds will obscure our sunny day, even without your whining.
Still, they’re better than the weirdos who take out their own disappointment with their lives on the disabled; the ex-friend who commented on a piece I’d written in a newspaper that when you are disabled “the person you were is dead” or the man who lives in my apartment block who opined that “people like you should be locked away”. But I am a tough old bird – if old age is no place for sissies, as Bette Davis said, disability doubles that – and I find such weirdness interesting rather than depressing. How degraded can a person’s soul be, that they feel the need to attempt to make disabled people feel worse about themselves?
There are very few people who affect me; that’s the way it’s always been, but being disabled has, while making me more physically vulnerable, at the same time made me mentally tougher. The only reaction to my disablement which touches me – and saddens me momentarily – is when my husband became hopeful about the fact that I could stand, then bear my own weight, then totter about with the help of a walking aid. He really believes that I’ll walk again; I do not.
So of all the things you could say to me that you might imagine – for good or ill – would upset me, only “You will walk again!” hits the target. This, more than anything else, illustrates the strange reversal of fortune I have lived through for the past year and a half; it’s the hope – not the spite, or thoughtlessness, or weirdness – that gets me every time.
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