Finding the language of illness....

"Where are the words/to speak this thing in me" Lamb

I've decided to resurrect my blog, after being inspired by Anthony Wilson, who I saw at the Exeter poetry Festival. He read from his collection called riddance which is about his own experience of finding out that he has cancer, his journey through the emotional seesaw of treatment and prognosis, and into remission.

I found his reading very moving, especially because many of the thoughts and feelings he touched upon I could relate to because of my own illness. I talked to him afterwards and told him how I felt, and said how hard I find to write about my own illness, even though it is the biggest thing that ever happened to me, and the most defining thing in my life.

He said that he also found it hard to write about something so big, and I could relate that, for how do I write about something that is so much a part of me, so much a constant, and so much (unless someone has lots of disabled friends) that is often an experience other people don't share?

It's strange, there is so much poetry about emotional pain-regret, loss, jealousy, unrequited love, uncertainty-but there is very little about physical pain. Chronic illness, disability and pain are often conspicuously absent from all art forms- whether the visual arts, writing, poetry or film. Love is a red red rose but what is the feeling of pain that runs like a red river down your arm, like a cold fire? The only language that there is for pain or illness is medical language - tender points, neuropathic pain, chemotherapy, metastasising, pituitary gland, inflamed, spasm - but these are not my language, only the language given to my experience by other people.

Anthony Wilson said that I should try and find my own language, an analogousI have made myself, and pointed me towards  Julia Darling (whose poem I have included, along with mine, and at the bottom). So that's what I'm trying to do at the moment, trying to find my own language for my experience.

And one of the 1st steps of that for me was reading out a poem at the Exeter poetry slam about what it is like to be chronically ill. I was very nervous about doing it, and I didn't get past the 1st round, but I got something better than that: at the end of the night 2 people who are also ill came up to me and said how much they were moved by the poem, and even that it made them cry! Now I don't want to go around making people cry, but being told that I could put something of their experience into words, especially if they found it hard to find the words for it themselves, did feel like a gift.

And right at the end, another woman came up to me, and said that although she wasn't ill, she understood how it felt for things always be an uphill struggle, and that was a gift to for me because it meant that someone shared my experience and that was possible even if they weren't ill.

So that's what I'm trying to do now, to find my own language, and here to make a start is the poem I wrote the slam:

There was no church, no graveside grief

no mourners in black, no funeral wreath

but it was still a death of the self

though its passing went unmarked.

Parts of my brain stopped firing,

whilst others fired too much.

A cowboy electrician had fucked up

the wiring, ridden off on hi-ho

into the horizon’s red glow

ending the life I had known

Some say there are parallel universes,

realities folded like paper dolls,

for each one we see a thousand

fan out over parallel worlds.

And that makes sense

cause in my head there lives another me,

that can walk the length of a street,

have a job and a house, who’s free

to live the life of what could

and should and would have been. 

You think your journeys all planned out,

but fate is a dodgy sat nav

steering you down unmarked roads

twisting lanes you don’t want to go,

destination: unknown.

But this other self grew heavy,

an albatross around my neck

calling the “what if’s”

over and over again.

So I let it fly

kissed it goodbye,

and made peace with life as it is.

And I know that sounds sad,

like giving up,

but its more how the stone

accepts the water that wears it away

cause it knows one day

its shape will fit the river’s flow.

And so I let the current of my life

carve me with pain,

till I sit snug in its grip

smooth in its palm. 

I     In the tsunamis that grab our lives

and drag them into the sea,

what survives in what’s left behind

are the strongest parts of you and me.

So whilst at the drop of a hat

I’d have all I missed back

and would drop one more

to catch a break from the pain ahead,

I’ll take the challenge to walk the line

between the pebble worn to dust,

and one worn smooth by the tide.

And sometimes this is what I want to say

When friends ask “How are you today?”

but the truth is often easier to downplay

and I hide behind “Yeah, I’m okay.”

and Julia Darling's poem:

Chemotherapy

I did not imagine being bald

at forty four. I didn’t have a plan.

Perhaps a scar or two from growing old,

hot flushes. I’d sit fluttering a fan.

But I am bald, and hardly ever walk

by day, I’m the invalid of these rooms.

stirring soups, awake in the half dark,

not answering the phone when it rings.

I never thought that life could get this small,

that I would care so much about a cup,

the taste of tea, the texture of a shawl,

and whether or not I should get up.

I’m not unhappy. I have learnt to drift

and sip. The smallest things are gifts.