I LISTENED to the Irish Times Women’s Podcast this week.
Guest presented by Marian Keyes and featuring Irish Times columnists Aisling McDermott and Laura Kennedy, it was one I was really looking forward to.
They were on to talk about their newly released beauty book About Face – Aisling being the co-founder of Ireland’s first and wildly successful beauty blog Beaut.ie which Laura also wrote for – and how make-up can be a powerful tool when you’re dealing with the horrors life can throw at you.
During the interview Aisling spoke bravely about her battle with an aggressive and progressive form of Multiple Sclerosis, something she had never spoken publicly about before.
She talked about how she doesn’t ask ‘why me?’ anymore because the answer is always ‘why not me’. How she isn’t bitter because being bitter takes up precious energy and how she didn’t want MS to define her, how she ‘wanted fun in my life’.
I listened intently, physically rooted to the chair, realisation slowly dawning.
As I’ve mentioned before, I have Crohn’s Disease, a chronic, incurable autoimmune disease of the bowel. For many years I have railed against it. Fought it and hated it and asked over and over again, why me? I’ve cried and screamed and written here and elsewhere about it, tweeted it, Facebooked it and almost without realising it, I’ve become defined by it.
It’s true that I hate this disease, it has taken and taken from me and it causes nothing but pain and illness and sadness and I’m angry about it – but listening to Aisling I realised I don’t want it to define me any longer.
I want fun in my life, too.
Of course there are going to be bad days. It IS ok to not be ok. It’s ok to talk about it, it’s ok to feel hard done by and to cry hot ugly tears. But I don’t want this disease to be who I am anymore.
As I listened to these incredibly brave women talking, I felt a real shift in my thinking. I’m done being bitter. That’s not to say there won’t be hard days, there will, but as Aisling so pragmatically said ‘Life happens, doesn’t it?’
Life happens and I feel ready to accept that now.
And I’m choosing fun.
I SAW this on Twitter earlier today and thought it was hilarious.
It’s a Long Term Illness Bingo Card, made up of the phrases those of us with chronic disease (I have Crohn’s Disease) hear on a regular basis, so often in fact that you could play bingo with them. Hence the name. Clever, no?
But you LOOK fine is probably the main one. Closely followed by my personal favourite: My aunt had that, she died from it. Eh, thanks?
Anyway I was discussing it on Facebook and Twitter, having a bit of banter back and forth with others who co-exist with long term illnesses trying to outdo each other with the worst things people have said to us when we’ve been ill. I felt lighthearted enough, I’m having great difficulties with my Crohn’s at the moment but today was a good day, so I felt able to laugh about it.
I logged off then and went about my business, making lunch for The Beast and I and then packing us both up for a walk in the sunshine followed by a trip to the post office.
It was on the way home from the post office that my day turned from good to bad. Just like that. In an instant I went from looking and feeling well, to being more humiliated than I’ve ever been in my life.
I soiled myself. In my front garden. Desperately rummaging for my keys, trying to get the door open, turn off the alarm, get the buggy in through the door. But it was too late.
I was hit by an instant bout of chronic diarrhea. It destroyed my clothes, my underwear, even my shoes. All my neighbours were out mowing their lawns, playing with their kids, washing their windows. I’m sure some of them saw me stumbling in the door, like a one woman dirty protest.
It was horrific, I’ve never been so embarrassed and so disgusted with myself in all my life. It’s an all-too regular side effect of having Crohn’s Disease, that sudden, urgent need to find a toilet in 30 seconds flat. That familiar, sickening cramping in your stomach. Most people with Crohn’s have experienced it but that doesn’t make it any less humiliating.
It was somewhat prophetic that I played Long Term Illness Bingo with Twitter pals this morning and then suffered at the hands of my disease this afternoon.
This hasn’t been an easy post to write, but perhaps the next time you feel the urge to tell a colleague or a friend or a neighbour that she LOOKS fine, think of me today who, in seconds, went from perfectly fine to in pain and excruciatingly embarrassed.