A slam poet’s take on living with FSHD

As with any aspect of the human condition, living with FSHD can inspire all forms of artistic expression. Cypriot Argyri Ioizou recently won his nation’s first-ever slam poetry competition. Congratulations! Here’s his story. Scroll down for the poem and video of his prize-winning performance:

I was born in 1979 in Manchester in the UK then grew up in Liverpool and then moved to Cyprus when I was 15. At 18 I did a year of compulsory national service and then at 19 I was diagnosed with FSHD. I had scapular fusion surgery on both my shoulders 2000 and 2001. I’ve been slowly deteriorating ever since. I wear Foot-ups on both my feet to lessen the major foot drop I have. I consider walking as a gift and will only use a wheelchair when it is absolutely necessary. I’ve had some falls over the years. I broke my hip in 2013 which required 3 screws in my ball joint. I fractured a couple of vertebrae in my spine while falling down the stairs and fractured a few of my ribs while falling down the concrete steps of a football stadium in 2016. It was then I realized that something had to change.

I do not drink but I was a heavy smoker and I knew that I had to deal with my constant and worsening depression. I was never suicidal but it was definitely something I worried about. So I looked into and practiced meditation. I thought if I can’t control my FSHD then I can definitely look in my mind and see what the hell is going on. After awhile I thought finding a cure for FSHD would be easier than sorting out the complexities of whatever I thought was Me. After 22 years I quit smoking (hardest/easiest thing I’ve ever done). Then someone told me there was an Open Mic in my small town of Larnaca and my life turned into writing small 5-minute stories and performing them. 

In 2017 I entered Cyprus’s first ever poetry slam and got to the final with a slam poem about souvlaki and sushi (a piece about how people’s attitudes can change so quickly) and a couple of days ago I won the first ever National Cyprus Slam Poetry Prize with ‘The Enlightenment of The Pot Bellied Penguin,’ which is a hyper-real account of how I see and feel living with my condition.  I now hold monthly Open Mic Story, Song and Poetry nights under the platform of ‘Pe Ta’, which is Greek for ‘Say It’, which gives anyone the opportunity to say their original work in any language in front of a live audience.  

The Enlightenment of the Pot Bellied Penguin
Or CRACK BUZZ HUNN
a poem by Argyri loizou

Someone is shining a light in my eyes!

AHH AHH AHHH Ηρέμησε.  Ηρέμησε

Breathe Relax Breathe. Ατε πε μου… Τι θυμάσαι?

Tell me… What do you remember?

I’m… I’m walking. It’s the 2nd of the month and it’s just after 7 so why am I remembering and articulating the exact date and time? It’s almost as if it’s, it’s, it’s…

It’s where I’ve got to be and I’m gonna be late. I’m always late. 

Right sway. Left sway. Right foot and now Left foot. Little bit of back and…

This isn’t a way that anyone has or anyone will walk ever but it seems to make me go forward… somehow.

Right sway. Left sway… Right foot, Left foot…

BUZZZ

One sec… My phones buzzing. Left hand in my left pocket to check it. Yeah it’s buzzing…

HUNNN

Suddenly realize that for some reason my right foot’s stopped by an invisible, immovable force on the ground. My left leg buckles. I’m losing balance but it should be ok because… Oh shit it’s in my pocket. My left hand is in my pocket and I’ve got no time to twist and fall on my right but if my hand won’t break my fall then my head will… oh ffffffff…

CRACK

Τι θυμάσαι?

Everything.

I remember being lifted in the air till I weed myself laughing. She’s got a nice smile and all he’s trying to do is make me laugh.

BUZZ

I’m taller now. I’m taller than the both of them but they’re in a Doctor’s office talking about me and they’re in tears saying things like Its Incurable and terms like Shortened Life Expectancy.

CRACK BUZZ HUNNN

I remember her. I see Her in a white dress. Her draped in currency. Her Dancing with… Him. Him. Him and not me. It should have been me.

It should have been me but I wasn’t good enough. I wasn’t fast funny or strong enough. Just turned 40 years old and no one to love. How can I be man enough when all I can see is my shame and my disability?

So I fall Fall Fall Fall. I feel the full force of the fear of reality.

Forever trapped. Forever alone, drowning in the cold harsh space of infinity.

I feel my heart bursting out of my chest almost ending it all…. Until A Breath forms out of The Emptiness.

If I have a breath I have a moment. No past or future just this moment for all eternity and its filled with Love.

But one sec if I FEEL love, then that must mean that I am still right here.

Suddenly I’m back with another HUNN. But I can’t be cos all I see is these angels and light shining down upon me.

One sec, that’s not an angel. That’s a nurse and that’s my Dad and me Mum me family.  That’s my wife… wait what? I don’t have a wife, but that is my soul mate and she’s fading and who’s that little girl holding her hand why is she saying Papa to me?

Wait! Wait! I can’t get a good look because someone is shining a bloody light in my eyes…

AHH AHH AHHH Ηρέμησε.  Ηρέμησε

Breathe Relax Breathe. Ατε πε μου… Τι θυμάσαι?

Tell me… What do you remember?

Tags:

Leave a Reply

Your email address will not be published. Required fields are marked *