Guest post again (saves me so much effort!), this time from the amazing lady Sue Marsh. Her blog is
We all know it who have posted here. We all know that by writing too well, or too often or too scathingly, we put ourselves at risk. Some of us will be or are being “investigated”. Some of us will simply lose our sickness or disability benefits, which could mean losing our independence or even our homes.
Despite this culture of fear we are living in, just look at these stories! Could you honestly read through them all without feeling astonished at the state of our care of and attitudes towards the sick and disabled?
If you are one of the mercenaries hired by the ATOS monopoly to prove we’ve all been cheating all along, you can watch me if you like. Take your pictures, twitch the curtain, send me forms and summon me to assessments. Doubt me, judge me, even try to take away my dignity, but you will NEVER take away my shoes.
If I have to use a wheelchair, then surely it’s time for the 8 inch hooker heels? (Electric-blue satin with never ending chrome spike heels. If I can’t walk anyway…) If I feel like wearing fake-fur and ripped leggings I will. I will wear red lipstick and paint my nails gold. If I want to go to dinner with friends and sip cocktails and nibble tapas and pretend, just for once, that I won’t pay for it dearly later, then I will. I don’t do hair shirts and self-denial.
If I have a rare good day, amongst the searing pain and endless vomiting and I want to dance, then I will dance. Joyously, because I know that joy is fleeting. If it puts me on the floor, I will still dance, because I am free. You can’t tell me never to dance.
If you follow me walking my kids home from school one day you might see me chase them, giggling until we fall in the crunchy piles of autumn leaves. Will you see the wince I try to hide as we carry on home? Will you notice my six year old take my arm because he’s already learnt what giggle-chases cost me? But I vow to chase my kids whenever it might not kill me.
If I see your hypocrisy clearly, I will write about it with scorching fire. I will tweet from a hospital bed, with my drips and my bleeps and my needles and tubes. Read it if you like, you might learn something. Writing is all I have then – did it ever occur to you I can dictate?
At weddings, I will wear a hat. An enormous, wide brimmed, floppy hat, with freesias stitched into the brim. I will hold my head high, push my shoulders back, paint on a dazzling smile and sip champagne. Life and soul for the hour or two life and soul is required. But will you see me when the mask slips? When my soul can’t cover for my life any longer?
I can transform, butterfly-like with expensive skincare and will-power. The grey, clammy, puffy little face you know will emerge, glowing and radiant, my eyes sparkling, my hair shiny. Like Cinderella, the sheen will fade by midnight, but you might not notice, busy as you are marvelling at “how well I look.”
One warm, summer afternoon, when the breeze feels like silk, I will take a motorbike ride with my husband, racing through hazel lined lanes across the rolling South Downs. I will gulp in pleasure and live a year in those few, adrenaline-fuelled hours. I will pull off my crash helmet, shaking my hair and laughing at life. I wonder if you’ll remember how little my life normally gives me to laugh at?
So, whatever money, or security or comfort you try to take from me, all those other things are mine. Chronic illness takes away almost everything you ever took for granted – ambition, spontaneity, careless energy, dreams, independence – sometimes even love. When any of those things come fleetingly within my grasp, I will grab them.
Wearing an Elvis print mini-dress with pink polka dot Jimmy Choos.
**Once again, please share/link/tweet – I don’t care where, the more people read these One Month Before Heartbreak posts, the better. Yes, you can copy and paste it into emails, yes you can send it to your MP. In particular, perhaps I can ask you to send this to high profile women via Twitter and Facebook? On Twitter with the hashtag #ombh. We need friends in high places who are prepared to support us.