Wonderfully Imperfect: A Poem About Living With Septo Optic Dysplasia

No one ever said that life would be a bouquet of fragrant roses. I know as well as anyone else. I am a person with spirit, drive, sheer power and a thirst to learn and strive for better. I’ve never letanyone or anything stand in my way. it’s been drummed into me since childhood. But, what I want you all dear readers to understand is that my life didn’t start with just a visual impairment. There is more than that. I have always been a closed, padlocked book and that’s been my coping mechanism. But, now in my late teens, at University and with budding dreams of becoming author in the future it’s time I told you all my full story.

I was born with a condition called Septo Optic Dysplasia, it is a rare medial endocrinology condition which affects the Optic nerve located at the back of my brain. It has consequently left me with limited vision, yes. But I also have Hypoglycaemia (a form of diabetes) and hormonal deficiencies which I am now on replacement therapy for. I consider my life to be a walk in the park now, after the years of overnight blood tests, operations and growth hormone therapy I can finally say I’m in a state of happiness, total bliss.

I am blessed with a beautiful Guide Dog, good manageable health, a place at Goldsmiths University, a high amount of writing recognition, my wonderful friends that I now could not be without and my loving family.

It has lead me to understand life as house, the more struggles and obstacles you face is just another brick to add to the structure. In the end if you keep battling through them and aspiring for bigger and better you may end up with a glorious mansion of a life. Just keep going and don’t glance back over your shoulder thinking of the past.

What’s done is done and now it’s time to look to that bright and glorious future.

We will never doubt that everyone has different problems that they have had to battle through their life. But, we must endeavour to put our demons in the gallows and forget they ever haunted the halls of our mind.

Life is marked by the hands of a ticking clock and that clock is not ours forever. The Universe is a draconian Mistress and soon she’ll be back asking for the precious time she blessed you with.

For any VI’s reading this always remember that even though your sight has been removed from your hands, time hasn’t. In the future your sight may be restored, with the improvements in stem cell research and scientific discoveries nothings impossible. But, time can never be reversed by our hands.

“Carpe Diem” Seize the Day.

Know that saying my dear readers and live by it.

I shall leave you with a poem I wrote and had been published in a anthology known as “Bright Stars.” Which is available in The British Library. 

I wrote this some three years ago, at a time that the struggles had seemed to end. It felt like sheer relief to pour the words smoothly onto a page.

I’ll admit I’m no Milton…but a girl can dream.

I’ll wager every pound to my name.

That you know every hospital game.

I’d laugh till my sides ached.

If you didn’t know how much you could take.

You all know the way.

It’s etched into us from the first day.

A rhyme, a chant, a prayer, the words of wisdom, real life.

Gruelling strife.

The dimming coloured lights, the fade of a music box. Leaving play.

Childhood never seemed so far away.

Old head, young shoulders.

That’s what they told us.

Wise beyond your time.

That’s the moral of this rhyme.

Heads constantly brimming, the sensation of endless spinning.

Along with leisure

Never forgetting the next 12 o clock measure.

God! doesn’t it ever stop!

No, not for us, that’s that with us lot.

Shrug it off, stay tough, have a laugh.

No point in losing heart.

Take it with a pinch of salt.

That’s what I was taught.

Listen here!

There’s more to you than that my dear.

For old times sake.

Keep calm, carry on.

As the sea of life crashes against your sails the harboured walls of your family remain strong.

Always there through all wind and hails.

All weathers.

Making troubles seem as light as feathers.

Why is it I’m always kept in the dark?

No knowledge for me to remark.

Like a mole residing in a burrow

A sense of no tomorrow.

A mouthful of doubts, might’s and the dreaded “could.”

I showed them like I said would.

This is the way it is, how it was meant to be.

I’ll always say “Don’t you dare pity me.”

What’s a comparison of me? And a likeness of you.

An antique in a window.

Tarnished, bashed, wonderful.

Unique, like nothing ever known.

Like no one ever knew.

Funny! those are the words I use describe me and you.

Knuckle down, build up those ideas.

No worries, no regrets, no fears.

Come now, there is a lot more to do.

Something more brilliant resides in you.

It’s not hopeless you know.

Those traffic lights are bidding you Go!

It’s no longer Amber my sweet.

Fix a stubborn, passionate face to combat the ones you shall meet.

It can be done too.

I’ll be there, rooting for you.

A lot more to see.

Nothing is stopping you and anything is meant to be.

Regardless of being unwell.

There’s always more of a story to tell.

Doesn’t matter about uncertainty of each passing day.

You’re still wonderfully imperfect in every way.

By Emily Davison

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Emily is a Masters Degree Student, Writer, Journalist, YouTuber and blogger who runs the blog and YouTube channel fashioneyesta.com.

One thought on “Wonderfully Imperfect: A Poem About Living With Septo Optic Dysplasia

  1. I will never tire of reading this poem. It reminds me of all those difficult day during the early years of your life. The endless hospital stays, illness and battles you faced. I am overwhelmed at your determination and ability to stay positive, to remain hopeful and to look those Bullies in the face and fight back at there cruelness. This beautiful poem is a triumph of the success you have achieved already in your young life, I wish you every success Emily.

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