The Skin I Am In

On Monday 24th September 2007 the surgeon found that the tumour I had lived with my entire life was suffocating the oxygen getting to my brain. My family was told I wouldn’t survive.

I was 17 years old when this happened. I should be taking driving lessons and studying for my A Levels, but instead I am in a hospital bed with staples holding together an 11 inch wound that goes from the top of my head to the bottom of my neck, guess the best description of my appearance would have been somewhat a relative of Frankenstein. The severity of this ticking time bomb didn’t really occur to me when I came round, maybe because it was so much to comprehend; maybe because every adult spoon fed me pieces of information week by week, or maybe because my main focus was completing another sudoko puzzle faster than the last.  

There were many hurdles my body had to endeavour during those long weeks of recovery in hospital. Luckily for me they removed around 90% of the malformation, stopped the extensive bleeding and stabilised my condition from worsening.

I was born with a slightly larger left cheek than the right, putting it simply. It was as if I had a permanent abscess that requirement urgent medical attention. For me, I had had this from birth so it was very much apart of my appearance. Growing up I felt like I was constantly in and out of hospital waiting rooms ready to be poked, prodded and looked at with such curiosity as though I had 5 eyes and 12 ears. There was never any explanation as to where this had come from or could they predict how it would change as I grew.  

Hemangioma is the medical term for what I have but no one has ever heard of this, so I usually stick to saying “it’s just an abnormal mass of blood vessels, kind of like a tea bag covering my cheek”, because that’s how the surgeon described what they had removed from under my skin that day in 2007. The removing of a Hemangioma is usually for cosmetic reasons rather than medical, so it came as a huge shock to everyone when this planned out procedure drastically took a turn for the worst and if it hadn’t been removed when it did, I was told I wouldn’t have seen my next birthday. 

I rarely talk about this experience or the medical complications of my face with anyone, apart from when I am asked if I have had a stroke, or where the scar on my neck came from, or “I think you may have pen on your face" - referring to the blood vessels that still show through the skin on the left side of my cheek. Adam Kay describes this rare condition well in his book ’Twas The Nightshift Before Christmas’ when he was faced with a pregnant woman who had extensive bleeding from her ear. 

‘An AV (arteriovenous) malformation is a rare manufacturing fault where a spaghetti junction of arteries and beings forms. They most commonly occur in the brain, but can pop up anywhere. They have a tendency to bleed heavily, and this happens more frequently in pregnancy."

Which brings me to 2018. After burying all those feelings and emotions about what happened on that Monday morning in 2007 and the long road to recovery I went through, all those memories came flooding back when I sat in a chair, in the same hospital, with the same team that performed the operation on me 11 years ago, explaining the complications of the upcoming birth of my unborn 24 week old son. 

“Scars are worn by those who fought to overcome something hard in life and won.” — Paige, ‘Strong Is The New Pretty

I am glad I nearly died. I have heard people refer to this feeling of gratification when they overcome a life threatening illness. I get it. Staring death in the eye shakes up your whole world and alters your perspective on the future. Since this pivotal moment in my life I have chosen to stare fear in the face and embrace the phrase ‘do one thing that scares you each day’. I am known as a doer, someone who enjoys a challenge, will turn anything into a positive and won’t accept a barrier if it’s in my way, which I believe came from this experience at only 17 years old. 

I see my life as like a book, bound from birth to death, it includes memories and has characters. The characters in the book have no idea what is on the horizon, they are not afraid to reach the last page. Nothing is relevant before or after the story, nor does it matter how many pages there are. All that matters is how good I make the story. There have been times my appearance has brought me down, envy and jealously would consume me to the point where I would avoid having my photo taken, which later I am annoyed at myself about because I shouldn’t let this get the better of me. Over the years I have learnt to love the skin that I am in and embrace my uniqueness. 

Life can be a wild adventure and we’re all in it together. Be grateful for today and give yourself the room to be free. 

I do often think about that 10% of the malformation that could still be creeping up into my brain. How does it make me feel? I feel that I should celebrate every birthday bigger than the last ever since I made it to eighteen. 

"We're all born naked and the rest is drag”  — RuPaul

Jordan Wright

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