Scars


Scars

I was diagnosed with Crohn’s disease at the age of thirteen in November 2007. This was four years after a doctor branded my regular symptoms of my health condition as ‘imaginary’ and a product of an ‘over-anxious mother’.   

Since being diagnosed I have been on lots of medication; tried various food and liquid diets; had bowel resection surgery in July 2010; and in October 2013 had a flare-up that hospitalised me for nearly a week, during which my potassium levels were dangerously low I could have died. I have also made so many lifelong friends, and completed a tandem skydive for Crohn’s and Colitis UK and Dyspraxia Foundation in June 2018.

One of the many lessons I have learnt living with Crohn’s disease as well as dyspraxia, anxiety and depression, is health conditions, both physical and mental, are very ‘hidden’. If you were to look at me you would see a boy in his twenties. You would not see the hospital visits; the crying in the toilets; the bullying in the school corridors; the caring responsibilities of looking after a dad who has primary-progressive multiple sclerosis.

As we are coming to the end of ‘Crohn’s and Colitis Awareness Week 2018’ I wanted to share a poem with you. Scars is inspired by all the experiences mentioned above, especially the ‘hidden’ nature of health conditions. I am thankful that there are many people including yourself who are willing to listen to my story. Thank you for making these ‘hidden’ aspects more visible.

-----

Scars

When I look at myself I see a scared boy.
I see him crouching over the toilet with brown
Shit dripping down his arm, cursing as the burning
Never stops. I see him being told by his doctor that
He made this nightmare up; that it was ‘imaginary’.
That’s a scar.

When I look at myself I see a vulnerable boy.
I see him being bullied in school for being ‘different’
As he can’t run, can’t write, can’t read, can’t speak.
I see him being teased for needing that little extra help
So he doesn’t become another shadow in the corridor.
That’s a scar.

When I look at myself I see a lonely boy.
I see him without his dad carrying him up high
On his shoulders, standing over the darkness below.
I see him alone in the hallway listening to old voices,
Old memories from the one who slipped into the night.
That’s a scar.

But you don’t see this boy when you look at me.
You don’t see the cursing in hospital.
You don’t see the bullying at school.
You don’t see the mourning at home.
You see a ‘normal boy’ when you look at me.
That’s the deepest scar of all.

That's the deepest scar of all...Copyright © 2018 Rakicevic Nenad. All rights reserved. 

Sepsis


Sepsis

I stand on Lonely Hill and the knots of my lips rise as I watch him kite flying with his son. An emerald glows above our heads through the patient but scorched sky. The dad peaks behind the boy, his nervous hands clutch over his son’s as they grip the string.
I muter the words they share.
‘Up a bit. Down now. A little more powerful, son. No that’s too much; yes that’s better, look at it soar.’
They go about this dance but it always ends. This time a tremor in the sea beyond silences our voice and the grass divides into rusted memories. Piss stings the air as a wave of yellow pollutes Lonely Hill.
The last thing I see is his hands holding onto the broken kite.
‘I’m sorry.’ I shout. ‘I’m sorry. I’m sorry...’
But Dad can’t hear me.

But Dad can't hear me...Copyright © 2014 brizzy5000. All rights reserved. 

C#


C#

I was diagnosed with dyspraxia by an educational psychologist at the age of eighteen in March 2013. In five years, I personally believe, the hidden disability has gained more awareness. A large part of this is down to the charity, Dyspraxia Foundation, and its supporters for championing understanding in education, work and health industries.  

Dyspraxia has been discussed in online blogs, newspaper articles, on radio shows and on television programmes; some of which I have been lucky enough to contribute to. Doctor Who returned on Sunday 7th October 2018 and features the character, Ryan Sinclair, who lives with dyspraxia. They have already touched upon the coordination aspects, such as learning to ride a bike, so it will be fascinating to see how showrunner, Chris Chibnall, and the other writers continue to represent the hidden disability on screen.

We are in the middle of ‘Dyspraxia Awareness Week 2018’, so I wanted to share a poem with you. C# is a piece inspired by my experience of being bullied at secondary school; having a dad, who has primary-progressive multiple sclerosis; and living with Crohn’s disease, anxiety, depression and, of course, dyspraxia. The piece uses the symbolism of music throughout. I hope you enjoy reading the poem and get something out of it. Lastly, as ever thank you so much for your support. You mean so much to me.

-----

C#

You spit ‘failure’, ‘loser’, ‘nerd’ and ‘retard’ across littered corridors.
You punch and kick my inflaming small intestine and twist my trembling fingers.
You mimic my lisp on school bus rides to and from the twilit playground.
You snicker as my dad limps along with a dull walking stick during parents’ evening.
Perhaps worst of all, you grade me a ‘F’ on your musical score of hatred.

You do not realise I am a C# forever rising, forever shining in the shimmering sky.
You do not accept I or my loved ones have hidden disabilities and mental health conditions, but these are only cords on our guitar, strings on our harp. 
You do not believe my name shines in stories, poems, awards and I will keep climbing the instrumental soundtrack of life.

I am not a ‘F’ which you can silence.
I am a C#, forever breathing, forever playing even when the stars turn dark.

                 I am a C#, forever rising, forever shining...Copyright © 2018 gesh. All rights reserved. 

Time


Time

On Wednesday 17th August 1994 at 6.37am, I was born.

Of course, I do not remember much about being born. However, there is an old photograph which shows my mum, dad and older sister sitting on a bed as they welcomed me into this scary, beautiful world.

I was a hyperactive and clumsy child to the extent my parents gave me the nickname ‘Scooter’, many years before I was diagnosed with dyspraxia at the age of eighteen in March 2013. There were many fun, exciting childhood memories, including kite-flying with Dad; being read to by Mum; and going to the seaside with my sister. We were also lucky to travel a lot and we went to Australia, Canada and the United States of America. One of the main reasons for this is because we wanted to see the world whilst Dad was still able to.

My dad has primary-progressive multiple sclerosis. He was transferred into a nursing home in mid-2011. Before this we cared for him at home. It is so hard to see a loved one in such pain and it was and still is emotionally draining. I have memories of helping him get dressed; taking his medication; cleaning him up after he had a continence accident; the rows between him and my sister; and his frustration of not being able to walk anymore, especially as he used to run half-marathons and loved to cycle and swim.

It is frightening even now because since he has lived in a nursing home he has been in intensive care and has been in a critical condition a number of times with urosepsis and aspirated pneumonia. He is quadriplegic and has other issues, including related to mental health, cognition, behaviour, continence, skin integrity to a name a few. We regular visit him as a family when we can, and often play lots of games with him like Scrabble and Whot; which he occasional cheats at. Still I cannot help thinking one day soon he may not be here, so we have to make the most of the time we have left together.

Secondary school was also a particularly challenging time. As well as trying to balance caring for a disabled dad with homework and examinations, I was also bullied by other boys. I was punched and kicked in school corridors; they mimicked my lisp; belongings were stolen; and they laughed at my dad for walking with an aid during parents’ evening. School was not all bad though as I have some happy memories playing games, laughing and having fun with some amazing friends. I am also thankful to the English teachers and Learning Support Department for believing in me and vastly improving my language, literary, writing and speaking skills. Without you I would not have graduated from University of Hertfordshire with a first-class honours degree in English Literature and Creative Writing in September 2016. This is something I never thought was possible especially as I was predicted to achieve C grades and lower in my GCSEs.

If my life was a film or a novel, one of its themes would be health. Each member of my immediate family lives with a health condition. This includes but is not limited to multiple sclerosis, Myalgic Encephalomyelitis ‘ME’ and asthma. At the age of nine I sat on the sofa in the living room and told Mum my stomach was hurting. After four years of symptoms being branded as ‘imaginary’ and a product of an ‘over-anxious mother’, I was diagnosed with Crohn’s disease. Since November 2007 I have also been diagnosed with dyspraxia, anxiety and depression. Only recently have I found out through an MRI scan I may need to take biologics in order to control the active inflammation inside my small intestine. In some ways these health conditions have made me a determined, passionate and empathetic person. I am sure many of you who are reading this have sadly lost people to cancer and suicide, like we sadly have, and these are just some sore reminders of how time is so fleeting.

This is why since graduating from university, I have tried my hardest to push myself outside of the ‘comfort zone’ despite how terrifying it can be. I am pleased to have done so as I have made some lifelong friends; appeared on radio shows; taken part in creative writing open mic events; raised awareness of physical and mental health charities and conditions; passed my driving practical test first time in an automatic car; and completed a tandem skydive for Crohn’s and Colitis UK and Dyspraxia Foundation. Thank you to my family, friends, teachers, the community and of course you for your kindness, as it does go a long way.

What I am trying to say is time goes too fast. I am twenty-four years old now, but it does not feel that long since I was born. We should try to make the most of the time we have left, despite how difficult that sometimes can be. We should try and do what we enjoy. We should not allow bullies to tell us we ‘stupid’, ‘lazy’, ‘weak’ or ‘retards’. We are not. We are allowed to make mistakes, but we are also beautiful, kind, funny, creative individuals. We should try to tell our loved ones we do love them, and I know I do not say that often enough. It is also okay not to be okay, but it is not okay to suffer in silence. Someone will listen. Thank you for listening to me.

Time is so fleeting...Photographs of Jake Borrett as a baby and at the age of twenty-three. Copyright © 2018 Jake Borrett. All rights reserved. 

Beauty Every Day


Beauty Every Day

On difficult days I should look at the list below and remind myself, beauty can be found every day. I hope you find some comfort in these words too. Remember you are not alone.

---

Sunrises and sunsets

Trees, birds, butterflies, cats, dolphins

Penguins, monkeys, goldfish, roses

The patch of blue in the sky on the cloudiest of days

Rain after a heatwave

Reading a book which makes you cry

Watching a film which makes you laugh

Listening to music which allows you to travel in time

Smiles, laughter, joy, happiness

Telling jokes with friends over pints of Coke

Acts of kindness

Justice

Love

The sweetness of strawberries, the softness of candyfloss

The spice of hot curries

The clunk-fizz noise when opening a can of lemonade

The clink of water against ice in a glass

Writing stories, telling jokes, reciting poems, speaking on radio shows

Kites, trains, bunny rabbits

The first snowflake to land on the pavement at night

Bubbles, wishing wells, shiny one and two pence pieces

The wind brushing against your cheek

Silence after noisy building work has come to an end

Bright ideas, finished projects, triumph

Good news

Babies giggling

Winning a hand at Texas hold’em

Inspirational people

Playing board games with loved ones, especially Articulate Your Life

Visiting art galleries, playing football, sailing calm seas

Talking to people who listen to understand

When a good day feels like a lifetime

Travelling to new places and returning to old favourites

The smell of fish and chips at the seaside

Natural wonders, especially the Northern Lights

Meeting new people and catching up with good friends

Family

The brightest star shining in the darkest of skies

And so, so much more…

Beauty can be found every day...Copyright © 2014 HD Wallpaper. All rights reserved.