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“sometimes i feel forest fires erupting from my wrists…”

May 3, 2014

Just discovered Mary Lambert today and I LOVE her!!


Tell me, don’t you too?



chocolate is salad…

April 15, 2014



April 14, 2014


how the brain responds to chronic pain

April 2, 2014

off to hospital

February 20, 2014



Off to hospital tomorrow. Up since 1 am today.

I hope there will be rabbits, carrots and a doctor in a green suit with a bow on his tail–that’ll make it better, for sure.

I used to think of hospitals a safe places.  Nothing could go wrong as I lay nestled in the arms of all those bright caring people whose only wish was to make me well.

But it isn’t really like that at all. There is too much fear, pain and waiting and not enough hands to hold, time to talk or water to drink.  Pulsing need radiates out of every bed making the halls vibrate with a high pitched buzzing that doesn’t reach the ears. The tiny hairs on the arms and the back of the neck register the whine. It is evidenced in the restlessness of the visiting bodies, the too wide smiles, the forced cheerfulness and the darting eyes in search of a place to rest. Small shrines of flowers, fruit and cards do their best to impart hope, to quell the shrill staccato-like fear and the dull helplessness that emanates from each curtained cubicle.

Hospital is where you go when all else has failed. It’s the final option and everyone inside knows this.  For some it is the last stop and for others, hopefully including me, it’s a pit stop, a place to have our wheels aligned and oil changed before going back out for a few more laps. It’s a tired and lonely place, an assault on the senses, a limbo space between life and death.

I’ll be counting down the days until I can be back in my own bed.







“examine the heart of those machines you hate”

January 29, 2014

In four and a half hours I see (yet another) neurosurgeon.  I have been waiting for this ‘emergency’ appointment since October when I started falling over on my right leg because I couldn’t feel it hit the ground.

I have been shelving the pain, parking the panic and trying to carry on with my life, my work, my school, my loves and my friends.  Whenever the fear and pain threatened, licked at my heels I would try (sometimes successfully) to postpone it, to tell myself that there was no point in going into those feelings and I would work to stay firmly at their edge.  But, as this appointment drew closer my resiliency eroded.

Over Christmas pain began to fray the edges of my world, pushing resolutely through the mysterious shield I had managed to maintain until that point.  Then three weeks ago the nightmares began.  Chaos, uncertainty, grief and loss filled my dreams. And over the last few days I have noticed my permeability, I can cope with very little and the smallest of things fuels feelings of worthlessness, despair and defeat.

Now that the day is here I feel numb.

I don’t want to hope for a solution, because my experience over the last three years has taught me that there isn’t one.  I don’t want not to hope either, one has to keep fighting, right?

I don’t know how to do this.  I long for a guide, a blueprint, to tell me  how I should be coping, what I should be thinking.  I want to hear from other people in pain living with disability, because while the words of my able-bodied, pain-free loved ones are essential, their advice doesn’t sink in, instead it reminds me of the gulf between living this and living that.

I find myself flitting between despair and gratitude. I list repeatedly the things I am grateful for, and there is so much.  I love my life, my family, my friends, my job, my boss, my partner, I love school and my home.  I am happier now with who I am and with the totality of my life than I’ve ever been.  Weird, huh?

Writing helps, somehow putting it down lets me look at my experience, turn it over in my hands, register it.  And so I send this missive out to the universe and back to myself. Thanks for receiving it.

p.s. the title comes from a beautiful Audre Lorde poem called ‘For each of you’

No sun outlasts its sunset

December 9, 2013

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