This blog is about to share poems and stories, and articles on Crohn's Disease, Colitis and Dyspraxia. My name is Jake Borrett. I was diagnosed with Crohn’s Disease at the age of thirteen and Dyspraxia at eighteen. It is writing which has given me an outlet to express my deepest fears, desires and emotions.
Sunday 19th May 2019 is ‘World Inflammatory Bowel Disease Day 2019’. This is a time to reflect and to raise awareness of Crohn’s disease and ulcerative colitis, which are the two main forms of Inflammatory Bowel Disease affecting 300,000 people in the United Kingdom and millions more worldwide.
I was diagnosed with Crohn’s disease at the age of thirteen in November 2007. It took four years, blood test, colonoscopies and a second doctor’s opinion to get a diagnosis. This was after my first doctor stated the regular symptoms of abdominal pain, diarrhoea, weight loss and vomiting I was experiencing were ‘imaginary’ and a product of an ‘over-anxious mother’. Since then I have undergone surgery, liquid diets and medication to try and manage the disease. In October 2013, during a flare-up that hospitalised me for six days, my potassium levels dropped to such a dangerously low level that I was put on emergency intravenous drips.
However, I have also graduated with a first-class honours degree in English Literature and Creative Writing from University of Hertfordshire; passed my driving practical test first time in an automatic car; completed a tandem skydive in June 2018 in aid of Crohn’s and Colitis UK and Dyspraxia Foundation; and have met many kind, support, determined, empathetic, passionate people living with hidden disabilities. As Crohn’s and Colitis UK have campaigned this year, it takes guts to live with this disease.
It takes guts to live with a hidden disability where inside your intestine or colon is inflamed and ulcerated but on the outside you look like a ‘healthy’ and ‘normal’ boy or girl.
It takes guts to inject yourself with biologic treatments; take medication tablets with unwanted side effects; to go to hospital in order to survive; to cry in toilets; to feel so scared.
It takes guts to confront doubters, who claim you ‘don’t look sick enough’ to use the disabled toilet as you need to go or need to empty your stoma bag.
It takes guts to stand up to school bullies who call you ‘lazy’ or ‘stupid’, who laugh that your underweight or overweight, you are ‘different’.
It takes guts to say no to friends who have invited you out, because you are too exhausted, too anxious, too depressed to go along.
It takes guts to write poetry, to sing songs, to make videos to express how you truly feel.
It takes guts to talk, and realise you are not alone.
It takes guts to do what is right for you to get through the day.
Thank you for your kindness and supporting me living with Crohn’s disease, dyspraxia, anxious and depression. I am proud to have written most of these words whilst sitting on the toilet. I will not let any of my conditions beat me, and that in itself takes guts.
I would like to wish you all a very happy Mother’s Day 2019 here on Sunday 31stMarch 2019. I know I would not be here without mine in more ways than one. Thank you for all the laughter, the smiles, the hugs and believing in me through the good times and bad living with hidden disabilities and mental health conditions.
I have written a poem titled ‘Mum’ to explore how much she means to me, and to show that mums are wonderful.
You believe me when I say I am ill, when they do not,
Your ‘Strictly Come Dancing’ routines make me laugh a lot.
You light up the room, make the darkest English skies so bright,
You make me proud you challenge systems that are not right.
You talk to strangers in supermarkets, banks, ques,
Then embarrass me like all parents do.
You terrify all the monsters that want to take me away.
You make life magical, worth living, in every way.
2018 has been a challenging, frightening, exciting year for me. I had a minor urine infection; had a colonoscopy and an MRI ‘Small Bowel Study’; have recently started the biological treatment, Adalimumab ‘HUMIRA’ in order to treat a stricture of my small bowel due to my Crohn’s disease; have been overwhelmed with anxiety; felt extremely low on difficult days; and have seen the further decline of my dad’s health due to his primary-progressive multiple sclerosis.
However, there were many positives and achievements. Some of the highlights include:
› Passing my driving practical test first time in an automatic car with four driving faults. This led on to getting my own car and driving on the motorway.
› Completing a tandem skydive in aid of Crohn’s and Colitis UK and Dyspraxia Foundation. Thanks to your donations, we raised over £2,000.
› Joining a gym to improve my physical and mental health.
› Being a finalist for ‘The President’s Award’ at the St Albans District Chamber of Commerce’s Community Business Awards 2018.
› Doing a bit of travelling.
› Working on writing projects.
› Appearing on Trident Media Radio in association with University of Hertfordshire, Radio Verulam and BBC Three Counties Radio and in The Herts Advertiser.
› Raising awareness of hidden disabilities and mental health conditions.
› Spending time with loved ones, friends and yourself.
I also learnt that is important to be kind to yourself; it is okay not to be okay; and to always believe in yourself. You are amazing.
Resolutions for 2019
It is currently Tuesday 1stJanuary 2019 as I write this article and the year ahead is uncertain. Like always there will be difficult times but there will also be a fun, emotional and lifechanging moments. Like every year I set some possible goals to aim for.
Here are some of mine for 2019:
› Spend time with the people I care about. You are the reason why I am still here.
› Become a published author of children’s and young adult fiction novels.
› Travel the world as there is so many beautiful places to see.
› Raise lots more awareness of hidden disabilities and mental health conditions.
› Ultimately, to be happy.
I want to say thank you once again. You are the reason I keep writing; keep speaking; keep living. It means so much that I have you. You make the cloudiest of the skies the brightest shade of blue.
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.
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.
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 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.
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.
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.