Have you heard of McCune Albright Syndrome? You have a one in a million chance of getting it, and it is said to be incurable. At 19, I found out I was one of those “ones”.
The symptoms are sudden and strange. I began to lose my peripheral vision and notice my shoe size and height increasing, at pace. A tumour grew into my optic nerves, and made a growth hormone that deformed my features and made me: a fully grown woman, grow.
To halt the blindness and growth, I had brain surgery, twice, within 3 months; then radiotherapy, gamma knife surgery, chemotherapy, trial treatments and now, take thyroid and adrenal replacement drugs twice a day, every day. Before all this, I liked poetry, but didn’t need it.
After all this, I’ve needed poetry.
I write poetry because, when I write, the scale of things comes into my grasp, under my control. I cannot “fix” myself with a poem, but I can get perspective, correct some of the warping particular to my condition and its treatment.
And so I keep writing poetry. It’s become a ritual I turn to when nothing else works, like a kind of religion. I’ve chosen a few poems that I’ve used as prayers, to help me through the last year and hope they will, at the start of this year, be some reminder of the help that writing things down can be.
And be warned, my poems here are small but dark. This is because they are, for me, as well as prayers: cul-de-sacs of pain, after which I can better turn back and move on; making more of my life, having followed these darker feelings, on paper, to their natural dead end…
No. 1
Just one prayer
To answer, to become.
Deus grew higher.
As if to see it.
And the prayer
Diminished. Next
To other questions.
No.2
I started without rules
I stumbled into this day
I was all knitted to its
Sugars and salts.
Pilgrim was a hope word
In the morning;
Scrambled by night into
Lost hours, and I tasted it,
Almost dead.
No 3.
Wonder is timed
The rhythm is taught.
When snapped it dies.
Until the next time.
My steps are too slow,
Wind me up again.
No. 4
Upright, on the board,
Right place in the wave, maintain
My balance.
Tall board cracks
Under maw of foam, bites my face
Smacks out all air.
Empty, hope the next wave is small,
Please, Hydrocortisone tide.
No 5.
Now the flood, now the fortune
Or the shallows.
Take the current, float to future
Or stay here.
No. 6
In this life, we are born strong
But we grow fear.
The search for our body
Continues.
Can ritual give it shape
Once more. A walking?
No. 7
I’m afraid of health,
Without a cover, without a part
I don’t know my health self, yet.
Can I make it laugh?
No. 8.
In the war against the body
My mind has lost every battle
So far.
No.9
The trees shed
Their leaves
Without shame,
To the cold
They glare back,
Let mine fall.
No. 10
My time in health was
Short and deep.
I saw it then, I see it now,
From above: a ruin etched
In the crops, impossible to know
How it got there or why it fell.
No.11
My dream said she could see
A new life, with little
Ones, like little suns, tiny stars,
Their own
Planets rolling about the sky, their sky, with
Me a moon, but a moon.
No. 12.
I’m walking towards it, but it
Grows fainter under my watch.
A light, a movement in the
Darkness, bring it closer.
My works and days 