Sunday, 10 April 2011


Being ill sucks.  It really does.  There's no two ways about it.  There's no sugar coating the joy of having an 80-year-old's body, when your only 37.  Doesn't matter your poison.  Could be Bob.  Could be MS.  Could be cancer.  Could be one of the other bazillion diseases, disorders and syndromes that pop up just to lay a large steaming nard on your life.  Nosology doesn't matter.  The result is the same.  Life turns upside down.  And where once you were tripping the light fantastic, you are now scrambling to recover your dignity and equilibrium after face planting in a big pile of the universe's fecal matter.

(Sometimes life just doesn't turn out quite like you imagined)

And when you're lying in that large pile of turds you can do one of two things.  You can cry and gag and try not to barf. You can woe is me.  And convince yourself the universe hates you.  Or, you can laugh.  Big belly laughs.  Guffaw and snort laugh, until you have tears running down your cheeks. 

That's not to say it's not okay to cry and swear at the universe.  I've been there done that and got the crappy t-shirt.  Grief and Illness are bound together.  You can't have one without the other.  You can't find the funny, or take back ownership of your life, until that grief is acknowledged, embraced, loved, slapped around, purple nurpled, and put in the naughty corner. 

And finding that funny in the most unfunny of moments is all about ownership.  About copywriting your experience.  About taking back control.  About saying this is mine, it belongs to me.  I may choose to share parts of it with you, but this is uniquely mine. And I don't really give a crap what you or anyone else thinks.

Those who aren't, or haven't been ill often find my reaction to being sick a little hard to understand.   Hell, even most doctors don't get my sense of humour.  I still remember the gynecologist who whipped out my uterus back in the day going on and on about the fact that I would no longer feel like a woman, and all I could think of was this Monty Python sketch from The Life Of Brian.  Was my reaction wrong?  Should I have been more serious?  Should I have felt less womanly?  Should I have ascribed to his belief and spent the rest of my life grieving and being 'less'?  As far as I was concerned he could take my dysfunctional and disrespectful womb and boot it up the arse.  I've never missed it.  In fact I celebrated it's removal.  Given the comically perplexed look on his face, I don't think he quite understood that. 

And so it's been since Bob came on the scene.  I've done the tears and the woe is me, and frankly it's exhausting.  Even I get sick of myself when I get like that.  I could sit back and let it consume me.  I could hand over title to my body and my life and sit back in a miserable state of perpetual helplessness.  A seductive choice at times.  That would be my right to choose.  But it's just not me. 

If I were to sit down and list off every broken bit in my body, if I were to look at my ever increasing list of diagnoses, if I were to look at my ever decreasing functioning, my ever increasing pill collection, 'tis all rather depressing.   The reality is that I can't change what is happening physically, I have no control over that.  My body will continue to go along on it's own merry way, and I'm just the unlucky side kick along for the ride. 

But I can control how I respond to what my body is doing.  I can decide how I am going to deal with what I face on a daily basis, and the rather scary unknown that lies before me.  I am going to choose how I experience this.  I am not going to act my illness, and no doubt I'll be one of those old ladies who doesn't act her age.

It's not about being brave or courageous, those words are overused these days. Instead, it's about making a choice on how to live your life.  It's about deciding to change your perspective and not letting anyone else, even your own body, dictate how you experience your world.

Illness takes away choice, it leaves you powerless, or so it would like you to think.

Those who have faced, or continue to face, illness know the power of perspective, the power of laughter.  Of finding the funny in the most unfunny of circumstances.

I will live my illness how I choose to live it.

Not how anyone else tells me I should live it.

This experience is my own and I will make of it what I will.

I will shape it and mould it.

I will alter it at need.

It is my work of art.

I will tell inappropriate jokes.  I will shock my doctors and those around me with my supposedly unconventional attitude.  I will put pink glittery feather boas around my puke bags.  I will name my doctors after Motley Crue songs and ask for my angioplasty balloon to be shaped like a unicorn.  I will make totally inappropriate glittery red Dorothy Shoes that I can never walk in.  I will laugh at the fact that my boobs are a garden or, that more recently, my lady garden has decided to grow a rather scary weed.  And I will not apologize to those who think I should be more dignified and serious.

Each of us must make our own choice as to how we deal with the cards we are dealt.

Each of us needs to ignore those who throw the word 'should' in our face.

Despite Bob and his ever increasing possee of abnormal peeps, this is still my life.

And I will live it as I want. 

Michelle ©

Alive and Brilliant, Deborah Conway 1993.


  1. Great blog post Michelle! I agree, we have very few choices because of our illness. Choosing my attitude IS something I can control. I hate the "woe is me" Michele, and prefer the inappropriate laughing Michele.
    It's funny, this week I was thinking I really don't seem to fit in with the people around me. My sense of humor is a little off, and I like that part of me so much, I don't care what others think of me.
    Keep it up Michelle, I love your sense of humor, and life is easier when you can laugh at it.

  2. Rock on! May I find that place of ownership myself. Soon.

  3. Michele - I love "my sense of humour is a little off, and I like that part of me so much", because that's what it's all about. 'Gallows humour', 'black humour', whatever you want to call it, I think it's the decider between making it through, and falling into the black hole. It doesn't negate the bad, it doesn't sweep it away, but it definitely makes it far more bearable. I think you have to have trodden the road in some form to truly understand.

  4. Sandra - I hope you find that place too. It's a little different for each of us and it can be hard to quantify. But when you find it you just know. :)

  5. Look, you can either laugh or cry, right? And only one of those things gives you a monster headache. There's laughter in fox holes, concentration camps, and oncology wards. It's called survival. You go on and giggle, girl. I'll bring the silly string.

  6. Elly Lou - Silly string, I used to love that as a kid. I will giggle and guffaw and snort and squirt out that little bit of pee that happens to those of us of a certain age. Now if only Poise could develop a bedazzled version, I'd be set.

  7. Rock on about sums up this post! Love it <3 xx

  8. Goldensunbeams - thanks babe. :)

  9. Good for you, woman! Tell Bob to suck it. I'm sure there are days you just want to bawl and throw things but hell if you can show it who's boss by still finding enjoyment everywhere, you've already won.

  10. I can completely relate to this post on so many levels. Thanks for sharing.

  11. Veg - I will tell Bob to suck it, bite it and kiss it.

    Sara - thanks for stopping by, glad my rambles could help a little.

  12. I get this. A list of diagnoses that you either laugh or cry at. I choose to laugh (after a little cry) and it serves me well.

  13. As I have recently written the most self pitying post ever on my blog. You make me blush dear heart. Now I am in a morphine haze I have regained perspective and busy planning my life around avoiding constipation. Its fun honestly my new love affair with figs, prunes & decaf drinks is true love. I felt better after I had written my self indulgent post I may in time delete it. Your wit somedays so sharp, I gasp. Thinking perhaps to myself that those days are frankly *hite . You I think Michelle give laughter & light relief with your acerbic (is that a word) wit, to many who arrive at your blog in despair & leave stronger for reading. I love you on down days, strong days & side splitting funny days. I am a tinsy envious that you can insert into your blog youtube videos but hey ho I can live with that. Waiting patiently for your first blockbuster gaining worldwide success obviously.. as writing with bob as your trusty companion must be tricky. Seriously though you are an inspiration. Don't cringe & blush denying this accept it in the best possible way - continue to blog. Your honesty is refreshing in this blogosphere.
    I was arrogant thinking I had beaten my EDS I am rebuilding my shattered ego but truthfully not quite there as I am sure you must have gathered. So baby steps & prunes are helping me on my merry way.....

  14. I am trying to keep the laughter going. Reading your blog helps me keep that attitude. It helps to know other people are going through similar struggles and chose to laugh more than cry (and yell and use foul language, but that was really just that one time) :) Here is where I am starting to share my struggle and humor.

  15. Thanks! A good day to read this Michelle. -Rach

  16. And you will continue to find us the CRAZIEST old photos to go along with it all, omg!


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