There has been a fascinating discussion recently on the Inspire EDS Forum about the spirit/mind/body connection. The initial poster had been really distressed by her “New Age” friends basically telling her that she was choosing to be sick and asking what she was getting out of it. They went on to say that if she were more positive in her outlook she would be well. No wonder she was upset. I would have gone much further, kicked them in the shins and then asked what they were getting out of feeling pain!
As you may have noticed, I get a bit arsy when people comment on my blog that if only I tried x, y or z (usually food related, though supplements rank right on in there) that I’d be cured. I’m not sure which part of “genetic connective tissue disorder” they’re not understanding, or the fact it’s my EDS that is causing my mast cell issues. I’m not sure how x, y or z is going to magically make my tissue, faulty since before birth, suddenly ‘normal’.
Over the years I’ve heard people wax lyrical about the gifts ill-health gives them, and about how lucky they are to have slowed down and are now able to appreciate the little things in life, such as the sound of a wild snail eating. Me, I don’t like snails – disgusting little creatures that decimate my plants and leave slimy trails all over my patio. I don’t want to slow down – I’m in my forties not my eighties. I want to travel, get giggly on cocktails and dance into the early hours on an exotic beach somewhere preferably in the arms of a very tanned, very handsome single man. I want to eat what I like. I want to have the energy to help my ill and aging parents out more. I want a functioning brain. I want to not live in abject terror of my next food, drug or environmental reaction. I want to be able to sleep at night. I want to wear heels. I want to not be depressed, and angry and anxious. I want a working memory. I want a lot of things I know I’ll never have.
Don’t get me wrong, I watch Oprah. And after her Soul Sunday programmes I feel a warm glow and a renewed sense of living in the moment. Until I realise my ‘moment’ holds some serious levels of pain, nausea and fear that I’d prefer not to focus on. Living in the moment is nice, if the moment is nice. I’m not sure what lessons 35 years of chronic pain is supposed to be teaching me that I haven’t already learned. Actually, I do know. Absolutely bloody none. I am a Warrior who has grown weary of the battle.
I have done the whole Asking the Universe thing. I wrote down a list which included:
- money to build assisted housing for single people with severe M.E. (I don’t really need money for myself, although employing a Carer would help no end)
- a husband (would God have really created me to be the loving, sharing, caring, person I am if he meant me to live alone for my entire life?)
- and better health (I tried not to be greedy and ask to be cured as I realise this is unrealistic, and in fairness most of my wish for better health is so that I can help my parents and sick friends more).
I haven’t received any of it. Is that because I didn’t ask properly? That my intention wasn’t honourable enough? I have not magically been guided to brilliant caring doctors, or sources of help and support. I’ve found them because I’ve worked tirelessly at finding them – nothing has landed in my lap from the heavens. I feel forsaken by God and the Universe and wonder what qualifies one person for divine intervention and not another.
There are lots of platitudes about faith and spirituality that are banded around sick people. One of my favourites is “what doesn’t kill you makes you stronger”. What a crock of shit. My illnesses have, over the years, worn me down to such an extent that death would at times be preferable. Or there’s the very simple “when life gives you lemons, make lemonade”. Well that’s me buggered then, being as though citrus fruits are histamine liberators 😉 . Another favourite is “God doesn’t give you more than you can handle”. Hmmm, try telling that to Lynn Gilderdale whose pain from years of having M.E. was so intolerable she took her own life. And my all time Oprah favourite “your thoughts create your reality”. Maybe my Mom’s Mom’s Mom (or whoever started our chain of genetic defects) meditated on giving her descendants a chronically painful genetic disease while she was pregnant – because that’s what that little pearl of wisdom really means.
Yes, Oprah is a truly amazing, inspiring person. But to say it’s all down to faith and thought is like suggesting all the millions of poor, black kids the world over who smile their way through abject poverty and go to bed at night faithfully asking God to make their lives better just aren’t doing it quite right. Or enough. Which is another crock of shit.
I have not done some horrendous karmic thing in a previous life to be landed with a crappy life this time round. The karma thing doesn’t even make sense. A child who is still-born hasn’t had chance to either do something wrong, or to make amends. It’s a load of utter tosh.
I’m not saying that attitude is unimportant or that our thoughts don’t affect our physical health – I only have to think about starting a new drug and my body physically goes into panic mode, with very real palpitations, sweating, clenched muscles and paralysing anxiety. But to suggest that thought alone creates reality is laughingly absurd. My whole childhood I imagined I’d be married, have children, be healthy, and live a happy, sustainable life on a small holding. I absolutely didn’t imagine a life of abject loneliness, constant pain and suffering, and barely being able to make a bowl of Cornflakes let alone dig an allotment. This life was the furthest thing from my mind, so how did I attract it into my reality? The simple answer is, I didn’t.
We need to stop blaming sick people for not being positive enough, or not having enough faith, or not being optimistic enough, or not being mentally strong enough. No-one would choose this life and I personally would forego all the ‘lessons’ its taught me if I could wind the clock back and have lived 46 healthy years instead of 46 sick ones.
The positive thinking brigade constantly tell us that this moment is a gift, that’s why it’s called the present. I’d like a refund please, or at the very least a Gift Card so that I could choose a different life!