The Living Well Tales Stroke Poem

The Living Well Oxford project is about working with local people, and making their voices heard. This poem about stroke was compiled in June 2016, using stories from patients, carers, researchers and the Stroke Association, and with guidance from Danyah Miller (http://www.wizardpresents.co.uk/danyah-miller/).  This poem represents a collective voice on stroke.

In 2016 it’s time for stroke.

 Stroke is…

Identity theft

It is devastating, sudden, inspiring, transformative,

uncertain, isolating, dependency, unpredictable, focusing

Stroke is….

Unfair

Stroke can take away people’s opportunities, abilities, personalities and strength.

It can take away life.

But it can also ignite a real passion in people for the things which really matter.

I felt unwell for about 10 days before my stroke. I had the stroke whilst asleep so didn’t know it had happened, I woke up feeling like I had pins and needles and thought I’d slept a bit funny.

Strokes can seemingly come out of nowhere. My stroke was different.  I had a constant bad headache, but I didn’t know it was a stroke.  My grandma had a number of strokes.  My stroke was almost surreal and then very frightening.

Strokes can make you lose your memory, can really change things. You can forget that your hand isn’t strong anymore, forget that you’ve left the oven on, or that you’ve let the budgie out of its cage.

Stroke can make you forget that you’ve told us that story just a few minutes ago, or that you need a frame to walk with, to take your medication. Sometimes you can forget that you’re loved.

Reading is a challenge

Writing is a challenge

Speech is a challenge

Talking to people isn’t easy

People are often nervous talking to me. They don’t know what to think or to expect.  They often rush due to their nerves and this makes it so much harder for me.  I wish people could talk to me normally, but just speak a little slower.

I am most supported by….. The Stroke Association; my family; Headway, the brain injury charity; my doctor; support worker; clinician.

I am most supported by….. My Speech and Language Therapist; my neighbours; The Cognitive Neuropsychology Centre; my wife, Sam.

What has surprised me most about my stroke recovery is the slow pace of progress; my friends being there for me; that I’ve had to accept the limitations and challenges and adapt to cope.

What surprised me most about stroke recovery is that it’s harder and slower than I anticipated. The uncertainty of outcome, unrealistic expectations and false hope.  That people who have had a stroke have shown such love for their families.  That life is fragile.  That stroke survivors have made me appreciate humans’ ability to survive, adapt and endure.  That it’s really tough.

What I know about stroke is…

That one quarter of all strokes in the UK affect people under the age of 65 years; that we need to make the public aware of stroke and explain the risk factors; I never thought it would happen to me.

What I know about stroke is…

That it can happen to anyone, of any age, even babies; that this is not just a “white old man’s disease”; it’s like winning the lottery jackpot.

What I know about stroke is….

That there are over 1.2 million stroke survivors in the UK. That worldwide, stroke is the second single most common cause of death.

What I know about stroke is….

That worldwide it causes twice as many deaths a year in women than breast cancer and more deaths a year in men than prostate cancer and testicular cancer combined.

What I know about stroke is….

That you just never imagine it will happen to you.

What we know is….

It will take time and patience but we have the motivation to do something positive. Working with stroke patients has shaped who I am.

What we know is…..

Stroke is potentially catastrophic, but also for most people a journey of recovery

We recognise the enormous potential for recovery and progress

This is a positive thing

There is hope

In 2016 it’s time for stroke.

 

The first public reading of the poem was during the Living Well Tales event, held during Oxfordshire Science Festival in June 2016 (see previous blog post for further details).

 

 

 

 

 

 

 

 

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