I really don’t like the ‘i’ word.
‘Which one?’ you may ask. I suppose many could apply to me. Irritating? Infantile? Idle? Introverted? No, I’m talking about inspirational.
Last month I did a talk to donors for Action Medical Research. They’d asked me because Pudding and I had already appeared in a video for them to raise money for research into Hunter Syndrome. I have done talks before but it was still nerve-wracking. Not just because it meant travelling to London when I’d not been on public transport at all since the beginning of the pandemic, but also because a lot had changed since the last talk I’d done. Pudding’s condition has got worse and I know we’re heading towards the final years, so any subjects that I was touching on were more about reality than potential future. I just wanted to get through the talk without crying myself.
I got through it and although I made other people cry, I held it together myself. Afterwards, various people came up to me and told me that I was brave and inspirational. Now I’ve never been very good at accepting compliments and I’ve written about this before. I don’t think I’m brave – I’m just doing what I have no choice about. And believe me, I get up some mornings and feel full of resentment that I have to get medication ready, access Pudding’s g-tube, clean the stoma, change another pad and that this will happen every day without let-up until the end. (And then I cuddle him and all the grumpiness and anger dissolves.)
As for inspirational? The word is sometimes flung around without any true appreciation of what it means. ‘To inspire – to fill someone with the urge to do or feel something’. A lot has been written about the pitfalls of inspiration porn – where disabled people get labelled as inspirational simply for going about their daily lives. I don’t think I’m any more deserving of the word myself and I’m sure many of my fellow bloggers would say the same about themselves. Yet, we do write for a reason, and yes, perhaps we do want to be inspirational.
To inspire other parents struggling with a diagnosis to feel less alone.
To inspire you to make a donation to help research into rare disease or other charities.
To inspire you to think of wheelchair users or those with visual impairments before you park on the pavement.
To inspire you to reach out for help with mental health issues.
To make your workplace more accessible.
To remember that you never know what struggles other people are going through and to treat them with the same kindness that you would want yourself.
So…if my words have ever inspired you to do any of the above, then perhaps…you can use any adjective you want. (I’m still more comfortable with irritating and introverted though!)