Life (and writing) stop for illness: my life with endometriosis

Apologies, readers, for my long absence.  I have been recovering from surgery for endometriosis, and now that I am starting to feel more like myself again I’ve decided to deviate from my usual focus on writing to talk about my experience of living with this disease.

Endometriosis is a condition affecting roughly 1 in 10 women.  It cause, amongst other symptoms, debilitating pelvic pain and infertility. There is no cure and the most effective treatment is surgery, which for many women means multiple surgeries throughout the twenties and thirties. If you’d like more information you can read more about this disease at The Royal Women’s here.

When I was first diagnosed in 2004 I had never heard of endometriosis, despite having suffered the symptoms since a teenager. Even though I knew my menstrual pain was worse than that of my friends, I still assumed it was somewhere on the spectrum of normal and never even talked about it. Even as my pain grew worse over the years, and I began to have breakthrough pain outside of my cycle, it wasn’t until a cyst was found in my ovaries, approximately seven years after menarche, that I realised my experiences were not normal, that my pain was actually because of this disease that I now had a name for, along with all the other side effect that I had never even questioned before; and as all writers know, once you have a name it changes everything.

Now, increasingly I see endometriosis mentioned in news and social media, and in particular, I see awareness campaigns on social media, such as the campaign by Lesley and Syl Freedman, which you can read about at their Facebook page EndoActive, and this video by Miss Diagnosed which you can watch at the bottom of this page. So I thought I’d do my bit to raise awareness about endo, as I call it, by writing this little piece about my experiences, in the hope that the more endometriosis is talked about, and the more that women’s issues in general are talked about, that no more young women suffering endometriosis will normalise their pain but instead will get the help and support needed to deal with this illness.

Of course one of my blog posts would not be complete without a poem, so here goes:

The fight

I’m a fighter;
no matter what happens, this fear
won’t quiet me, this pain
won’t crush me, this anger
won’t consume me, this fatigue
won’t quell me, this life
won’t conquer me—

I’ll fight and I’ll fight and I’ll fight,
I’ll be bruised, battered, broken,
I’ll bear the scars of my battles,
I’ll be bathed in blood and
wounds that cut down to the quick,
blows that steal the breath from my feet
that leave me leaden and limp in the ground—
but every time I’ll rise, fists at the ready,
and I’ll fight and I’ll fight and I’ll fight.

Phone August 14 1747

Night Winds

Night Winds

Phone August 14 1725

Waking at midnight,
I listen to ghosts wail and fight
and tap, tap, my door

The wind cries and moans
circles my house like a ghost
waiting for my soul

The ghosts have come out
to play in these city streets—
they call out ‘join us…’

A banshee dances
with chimes: a message to the brave:
‘ dance with me, come dance.’

In darkness a knock,
outside the gate shivers forth—
empty but the wind

tiptoeing in dreams
through the dark hallway to night—
departed souls wait

The door gusts open
wind enters, beckons, draws me
out into the wild

A ghost in the night
surrounded by the unseen
naked in the night

wind softens to breath,
soul and hair akimbo
I return inside.

On not finishing things

On not finishing things

It happens to all of us at times, even though in a society consumed with the status of success we are often reluctant to admit it, sometimes we leave things unfinished. If we are lucky we may have the chance to go back and finish them, like that story long ago left in the bottom drawer, but in other instances we need to accept whatever that end point may be is, for today, simply out of reach. As a writer this is something that I sometimes have to face with my ideas. An idea for a story, a poem, an article, even a novel can completely peter out, no matter how an inspired start it may have had, not all ideas come to fruition. It can be particularly hard to know also when you’ve just hit a brick wall and need to find a way around it, so to speak, or when you actually need to call it quits and shelve the project for the next one.

If you’ve been following me for a little while you may have noticed that when I participated in NaPoWriMo I only posted the first half of my poems. Although I was doing this as part of the much larger 365 Poetry project, my aim was to follow the prompt on the above website for the whole month and post each poem consecutively as I finished it. This didn’t quite work out how I planned. Between life circumstances, other work, and illness I started to feel that my poems were becoming too rushed and losing too much quality and that I was better off waiting until I had more time to polish my drafts rather than sharing them as is. I also wasn’t very good at finishing my poems in order which made things slightly more complicated for me. Another reason was the varied nature of the prompts, which left me with some rather ordinary poems, some that were deeply personal and others that have the potential to become much better poems when I get the chance to focus enough time on them.  Those poems may one day find their way to these pages, but that day is not today.

For now though, since I finished my year of poetry and have been going back over all my finished (and mostly finished drafts) I thought I’d share a few more of April’s poems.

Day 17/291: Raindrops

The smell of rain, fresh, swollen,
potent—
drops shatter, softly, softly,
rolling to icy wet snail trails on skin
pattering a steady tempo on the pavement
now turned grey and shiny
to match my face;

and though the taste of tears lingers
in the raindrop hanging from my lip,
at least the skies have opened to mourn with me.

Day 18/292: On the bus at night (a rubaiyat)

Travelling on the bus at night,
phone GPS my only light
to places never seen before
or so they seem in this long flight;

passengers look away on sight
filled with ominous stranger fright
while I sit in quiet and more,
pensive as I stare into night

with hands white and gripped too tight
on the phone on which I try to write
words with which my muse I implore
until to brightness I alight.

Day 19/293: Incised moon

There’s an incised moon in the sky tonight
shining on a glittering sea,
shining on a man atop the waves,
shining on a man before me—
a striped enigma in a Peruvian hat
holding in his hands
a jewel box from Lazarus himself
waiting for me to take it, waiting,
while a sea cat swims across my shadow’s
shoulder blade and hisses
‘take it, take it.’

from:

Lazarus jewel box
incised moon
striped enigma
Peruvian hat
shoulderblade sea cat

Day 27/301: Footprints in snow (Ekphrasis)

The world is blanketed in snow,
path and trees almost hidden
in thick layers of white,
frost lingers in each breath,
shivers out of me
as I walk alone
through a path filled with footprints,
and I know I’m not alone
ghosts of past moments walk alongside me
for I can see their footprints in the snow.

 

 

Reflections on my year of poetry and some advice on the practice of writing every day

On the 30th of June I wrote the 365th poem of my year of poetry, posted it here on my blog, breathed a humungous sigh of relief and promptly collapsed in exhaustion. Now, after a well-earned rest, I have been reflecting on my experiences over the past year and I wanted to share some of these with you.

First of all, it took me a little while to truly comprehend that I was finished and even longer to actually pat myself on the back. For me, I think the mixed emotions of completing a large creative project like this are akin to reading a good book: the feel of satisfaction as you linger on that last page, the sadness as you close the cover and put it down, the feeling of still being immersed in that world, but now less tangible, still lingering in your thoughts and dreams even as you search for the next good book, knowing it will not be the same, but hoping for something just as satisfyingly different and dazzling.

Nonetheless, since the final day (well, after a few days off to be completely honest) I have endeavoured to maintain the practice of writing a little bit each day. Many writers talk about the need to write every day, and from my personal experience I couldn’t agree more. Writing every day makes writing easier, no matter how hard it might be to get those first few words out, or how mediocre some of the more forced writing may be, inspiration visits more often, the writing itself improves, and the most boring mundane experience or object may transform into a beautiful poem or piece of prose. In fact, I found sometimes the only hard thing was tearing myself away from this world of words and imagination and back into the everyday.

That said, writing a poem a day was a challenge, and as elated as I am to have managed it, there were definitely times when I felt overwhelmed and thought about giving up. Of course I didn’t, partly because of that ever-present fear of failure, partly because I committed to the challenge with a friend who was doing a similar project with photography, and even though we weren’t working together there was a sense of not being entirely alone in this commitment, and partly due to sheer stubborn determination. But in the end I think what really got me through was the realisation that as it was my challenge, it was also up to me to set the rules.

This came about as the months went on, and particularly as I saw myself fall behind my desired outcomes; going from my first month of finished sonnets and polished form poems to drafts that went nowhere and formulaic poems with bad rhymes. I soon realised that if I wanted to complete this challenge to my satisfaction, retain my sanity, and do other necessary work, I was going to have to compromise on exactly how I defined a poem, and sometimes even how I defined a day. So, in the end, I have poems ranging from sets of haiku, some jumbled masses of words that I will one day turn into better poems, to a series of epics in iambic pentameter, a score or so of sonnets and various other forms of verse, and even one sestina.

There are many more things I would like to write about this past year of poetry, but I don’t want to go on too much so instead I have composed a short list of some of the things I learnt over the past year:

  • Sometimes you have to make your own rules, regardless of what anyone else says, ie. what constitutes a poem, what constitutes a final draft, what constitutes a day even.
  • If it comes to a choice between being a little late or sacrificing the quality of your writing, never sacrifice your writing, never, ever.
  • The many urgent things that demand your attention when you have a looming deadline lose all sense of urgency as soon as time once more becomes available.
  • Finally, a poem is never finished, every rewrite, every reread, every new person who reads it, all bring with them new layers and depth of meaning and interpretation.

Now I have finished, my friends keep asking me what I will write next. The answer, as yet, eludes me. I have too many words in my head and not enough ink or paper existing with which to write them. For now, my task is to continue the practise of writing every day, regardless of what I write, and see where my words will take me.

 

A farewell, for now

To this meditation,
this writing of a poem a day,
you have been my project for a year,
a year so hard in many ways,
strewn with difficulties in mind, body and soul,
but also fond times, friendships both new and long,
but most of all a year of learning,
of soul searching, meditation and inspiration,
and celebrating my one true love—
my words, my muse, my poetry—
but my time is up, and so for now
I say farewell,
but only for a day or two,
before my heart will bear me back
to continue once more this journey in verse.

 

Day 365: The final poem (for now)

Day 365

Today marks the final day of my poem a day for a year project.  To celebrate i thought I’d share my final poem, a rewrite of Robert Frost’s famous poem, ‘Stopping by Woods on a Snowy Evening.  I’ve also included his poem underneath in case you’d like to compare the two.

Stopping on a rainy evening

Which path I’m on I think I know,
this street I don’t recognize though
not in this moment of pause here
while rain blankets the road like snow.

This journey I’m on might seem queer
from where I stand with no one near
while rain-filled streets become a lake
hide footsteps made all this past year.

I stand showered in rain and shake
with cold and the weight of past mistakes;
but the rain falls and with it sweeps
my doubts into naught but snowflakes—

this rainy night is lovely, dark and deep
but I have promises to keep
and miles to go before I sleep
and miles to go before I sleep.

‘Stopping By Woods on a Snowy Evening’ By Robert Frost

Whose woods these are I think I know.
His house is in the village though;
He will not see me stopping here
To watch his woods fill up with snow.

My little horse must think it queer
To stop without a farmhouse near
Between the woods and frozen lake
The darkest evening of the year.

He gives his harness bells a shake
To ask if there is some mistake.
The only other sound’s the sweep
Of easy wind and downy flake.

The woods are lovely, dark and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.

from http://www.poetryfoundation.org/poem/171621

Over the next few weeks I will share more poems and my reflections from my experiences of 365 poems, but for now I will leave you to enjoy my last poem (for now) while I bask in my tired glory of completion.  I would also like to say a big thank you for all the likes, inspiration and encouragement from my family, friends, and of course, my readers.  I couldn’t have done it without you.

Winter Lights

Yesterday (1st of June) marked the official start of winter, a season that has of late sparked many melancholy feelings, possibly because when bad things happen to me they tend to happen in the colder months.  So this time I decided to start the season on a positive note with a little personal celebration.  At federation square in Melbourne they a running an exhibition/public space installation called the Lights in Winter to encourage us Melbournites to venture out into the dreary cold and smile.

SONY DSC

This is the poem (Day 336 out of 365) that I wrote while watching the lights from afar over my glass of wine.

Winter lights

The first day of winter,
rain smashing against my window,
a constant stream of sleet
from a sky in shades of grey,
the clouds are crying,
plants dropping with gloom,
all is miserable,
except, just this once, I am not.

Winter, again,
sky stark, bereft of sun—
but night,
the lights, the lights,
hovering high into the sky
at their brightest in this dark,
at their lightest,
light like me
when I forget how
winter always makes me hurt.

 

SONY DSC

SONY DSC

 

A tribute to Maya Angelou: “Still I Rise”

I’m feeling quite sad today, reading all the news of and tributes for Maya Angelou’s passing.  Like Nelson Mandela she was someone who had seen the worst of humankind, although in somewhat different circumstances, but still called for love and hope and forgiveness while always fighting for change.  The poem of hers I’ve chosen is the very first poem of Angelou’s that I read, and it still remains on of my favourites.  You can listen to her read it in the video, which I recommend, or read the words below.

Still I Rise

You may write me down in history
With your bitter, twisted lies,
You may tread me in the very dirt
But still, like dust, I’ll rise.

Does my sassiness upset you?
Why are you beset with gloom?
‘Cause I walk like I’ve got oil wells
Pumping in my living room.

Just like moons and like suns,
With the certainty of tides,
Just like hopes springing high,
Still I’ll rise.

Did you want to see me broken?
Bowed head and lowered eyes?
Shoulders falling down like teardrops.
Weakened by my soulful cries.

Does my haughtiness offend you?
Don’t you take it awful hard
‘Cause I laugh like I’ve got gold mines
Diggin’ in my own back yard.

You may shoot me with your words,
You may cut me with your eyes,
You may kill me with your hatefulness,
But still, like air, I’ll rise.

Does my sexiness upset you?
Does it come as a surprise
That I dance like I’ve got diamonds
At the meeting of my thighs?

Out of the huts of history’s shame
I rise
Up from a past that’s rooted in pain
I rise
I’m a black ocean, leaping and wide,
Welling and swelling I bear in the tide.
Leaving behind nights of terror and fear
I rise
Into a daybreak that’s wondrously clear
I rise
Bringing the gifts that my ancestors gave,
I am the dream and the hope of the slave.
I rise
I rise
I rise.

Maya Angelou