Nikolaus Friedreich

List Poem: Living with Ataxia

Disability Arts Cymru have introduced me to the amazing Sophie McKeand – the gifted writer, poet, performer who is the current Young People’s Laureate Wales April 2016 – 2018, winner of the Out Spoken award for Innovation in Poetry 2015 and longlisted for the Poetry Society’s National Poetry Competition in 2014.

Writing about the incredible collection of poetry, Rebel Sun, by McKeand, Martha Sprackland [me neither] says:

“This is mythological, musical poetry that not only crosses borders but seems to dismantle them entirely, collapsing time and space, transfiguring and prefiguring the world we live in.”

I have a signed copy and can confirm the books brilliance.

Anyway, Sophie is an admirer of my Tanka work and has encouraged me to try different poetic forms such as the List Poem below. I was fortunate enough to perform a list poem alongside Sophie at the #SaveWILG community awareness day at Set the Bar in February.

This was a resounding success and gave me the belief in my talent that I needed. It also led to further ideas for more poems such as the one written below. Maybe I can perform this in future with Sophie as I think we made a good pairing. Sophie is an esteemed poet in her own right so she probably doesn’t want me hanging around like a bad smell, but I think that I should maybe be looking for a person to complete my double act. I need an Ant for my Dec.

Anyway, here is my latest list poem:

Introduction: Music of this type will be created and performed as a backdrop to the introduction phase of the poem. This will be narrated by a third party.  

Friedreich’s ataxia is an autosomal recessive inherited disease that causes progressive damage to the nervous system. It manifests in initial symptoms of poor coordination such as gait disturbance; it can also lead to scoliosis, heart disease and diabetes, but does not affect cognitive function. The disease is progressive, and ultimately a wheelchair is required for mobility. Its incidence in the general population is roughly 1 in 50,000.

The ataxia of Friedreich’s ataxia results from the degeneration of nervous tissue in the spinal cord, in particular sensory neurons essential (through connections with the cerebellum) for directing muscle movement of the arms and legs. The spinal cord becomes thinner and nerve cells lose some of their myelin sheath (the insulating covering on some nerve cells that helps conduct nerve impulses).

The condition is named after the German physician Nikolaus Friedreich, who first described it in the 1860s.[1]

Symptoms typically begin sometime between the ages of 5 to 15 years, but in Late Onset FA may occur in the 20s or 30s. Symptoms include any combination, but not necessarily all, of the following:

It presents before 22 years of age with progressive staggering or stumbling gait and frequent falling. Lower extremities are more severely involved. The symptoms are slow and progressive. Long-term observation shows that many patients reach a plateau in symptoms in the patient’s early adulthood. On average, after 10–15 years with the disease, patients are usually wheelchair bound and require assistance with all activities of daily living.[3] 

[The lines in italics throughout the poem are to be spoken by different people dressed in appropriate clothing and illuminated on a dark stage by a spot light]

Living with Ataxia

Is a struggle

Living with Ataxia

Sounds muffled and unclear

Living with Ataxia

Smells of wet denim and shame

Living with Ataxia

Tastes of bitterness

Living with Ataxia

Feels brittle

Living with Ataxia

Wibble wobble, wibble wobble jelly on a plate

Living with Ataxia

Effects everyone around you

Living with Ataxia

Leaves you wondering what might have been

Living with Ataxia

Demands formidable mental strength

Living with Ataxia

Beats being programmed by The Man From Auntie 

Living with Ataxia

Could be the best thing that ever happened [discounting Maggie’s demise]

Living with Ataxia

“He’s just lazy and clumsy”

Living with Ataxia

Means wanting what you can’t have

Living with Ataxia

Forbids carnal delights

Living with Ataxia

Limits your liberty

Living with Ataxia

Allows your imagination to run rampant

Living with Ataxia

Prevents the attainment of Aquarian ambitions

Living with Ataxia

“Trampoline legs”

Living with Ataxia

Colours your life

Living with Ataxia

Black, dark grey or midnight blue

Living with Ataxia

Is not all bad [he lied]

Living with Ataxia

Results in a dark sense of humour

Living with Ataxia

Is no laughing matter

Living with Ataxia

“Sorry sir, I forgot my kit”

Living with Ataxia

Adds fuck all

Living with Ataxia

Subtracts hope

Living with Ataxia

Divides friends and family

Living with Ataxia

Multiplies hurdles

Living with Ataxia

“Maybe it’s a trapped nerve”

Living with Ataxia

Confuses small minds

Living with Ataxia

Frustrates 

Living with Ataxia

Embarrasses

Living with Ataxia

Teaches you virtues, such as “Good things come to those who wait”

Living with Ataxia

Makes you wonder who the fuck wrote virtues?

Living with Ataxia

“Have you got a licence for that?”

Living with Ataxia

Highlights injustice

Living with Ataxia

Illustrates that beauty isn’t only skin deep [thank God]

Living with Ataxia

Condemns you to a life less ordinary

Living with Ataxia

Contradicts

Living with Ataxia

Imposes barriers around ghostly souls

Living with Ataxia

“Sorry, only genetically perfect people can donate sperm”

Living with Ataxia

Did I mention it’s a struggle?

Living with Ataxia

Underlines inequality

Living with Ataxia

Objectifies the body

Living with Ataxia

Mystifies my mixed up mind

Living with Ataxia

Disqualifies true contenders to the crown

Living with Ataxia

“I charge by the hour hun

Living with Ataxia

Locks lively minds in dying bodies

Living with Ataxia

Mangles the idea of perfection

Living with Ataxia

Twists the spine

Living with Ataxia

Causes caustic sorrow

Living with Ataxia

“Fill your pockets chaps. These disabled freaks are easy targets”

Living with Ataxia

Suffocates the soul

Living with Ataxia

Haunts empty shells

Living with Ataxia

Implodes

Living with Ataxia

Crushes everything that’s precious

Living with Ataxia

Guess what? It’s a fucking struggle