PATIENCE (press release)

“There were times when I was reading this book that the hairs on the back of my neck stood on end and I felt my eyes prick with tears.”

(Fiona Roscoe, Advanced Nurse Practitioner)

A new book of experimental art and poetry by older people in hospital will help patients cope with illness and is being promoted as part of nurse training. 

PATIENCE is an account of the emotional rollercoaster of illness. The poems and artworks are by patients who are sometimes in the process of recovery, sometimes coming to terms with dying. The book trials experimental ways of working that haven’t been used in hospital arts, in a bid to get closer to the genuine voice of patients. 

Poet Philip Davenport explained: “We hope PATIENCE will help people deal with the journey through illness. The poems and artworks were made using cutup techniques, blending text and art, which allowed people to make delicate, tangential work that reflected their physical state. There’s a lot of humour and acceptance in the pieces. The idea is that PATIENCE will help people realise they’re not alone in illness, others have been there too.”

“We have put copies of the book on the wards for people to see. But the workshops were a tonic in themselves, the act of making something creative helps patients deal with illness, bringing respite. ”

“The end product is the joy you get from creating it…” (David, patient)

“Writing helps – ever since my stroke it helps me to spell – gets my brain working. Sometimes I get a bit down and I say to myself: come on you silly monkey, get writing. Do something.” (Joyce, patient)

PATIENCE was compiled from workshops and interviews with people in healthcare in the North West of England by arts organisation arthur+martha, in a Lottery-funded project. Threading between the art and poems are interviews with nurses, doctors and carers. The book becomes a cross-section of hospital life, using artworks, photographs (many are snapshots taken by patients of the view from their bed) poems, discussion. There are forewords by poet Carol Watts and psychiatrist Francis Creed; renowned American poet Robert Grenier wrote the ‘afterwards’.  

"The crossover between image and word is what makes this book unique - someone's shaky handwriting, or their face, or an object they've labelled - they are the fingerprints of real life. These little indications of frailty are very moving, " commented Artist Lois Blackburn from arthur+martha. “We encountered amazing determination, humour and kindness in hospital amongst patients and staff. People dealing with dementia, depression, diabetes, strokes... We met the experts in treating these illnesses and the sufferers, who in their own way are also experts. Their insights are important to pass on; they teach us how to live in our bodies gracefully as we age.” 

As well as being a tool for the wards, the book is being promoted as an adjunct for nurse training, giving student nurses a unique opportunity to understand and empathise with the point-of-view of older patients. The book is also available to the general public as an artful object in itself - a moment of peace in the midst of panic, a meditation on a rollercoaster. 

PATIENCE 129pp hardback, full colour ISBN 978-0-9539367-8-6 retails at £24.99 and is currently available from Amazon at: 

http://www.amazon.co.uk/

poems by dementia sufferer's

In response to our new book Patience, Advance Nurse Practitioner, Fiona Roscoe has written:

I don't think I have ever read a poem by a dementia sufferer before. Nobody usually has the time (or sadly patience) to sit and listen to their confusion. Here we are faced with disjointed sentences and isolated words which illustrate poignantly how lost these people must feel.

Fiona Roscoe RN DN MSc BSc(Hons) is an Advanced Nurse Practitioner (Primary and Urgent Care)

Now my genius is gone

the brain in its
skull-like maze
now my genius has gone
it’s difficult to say
describe everything, list everything

lost everything
(want it back)
can’t remember why I’m here
memory caught in a trap
it stiffens

spaghetti maze
fingers thick
disturbed at all times
keep building roads at the end of a whip
people say they know me

I wonder at it
puzzled, caught in a trap
now my genius is some worthless song
I use a lever a little
and it comes back.

Group Poem

Strength of Steel

Saturday, we held the launch of Patience at Stepping Hill Hospital. Coinciding with the Stepping Hill Open Day, we had a great mix of staff, patients and the general public view our book. 

I took advantage of being next to the cake stall, and my whole family benefited from the fantastic chocolate roulade.  What I found most inspiring was the tireless work of the volunteers, what a fantastic bunch.

We got some more wonderful feedback to the Patience book. A retired teacher visiting the hospital, was excited by the book one particular artwork caught her attention,  Lost my Independence:

"The Spiral, the strength of steel, your mind is unwinding- like steel, gradually unwinding, from one side to another,  thats how I see it- that would express everything to me." Sylvia Piggott. 

the minds of elderly patients

In response to our new book Patience, Advance Nurse Practitioner, Fiona Roscoe has written:

Who are we to know what is going on in the minds of elderly patients as they sit dutifully in their chairs waiting for the next ward round or cup of tea?

It is a time when many are at their most vulnerable and reflective but sometimes due to disability and ill health are unable to express themselves. The artists of arthur+martha have patiently sat with these souls and helped them to unlock their thoughts. In doing so, not only do we have examples of unique creative art but also a new dimension in our appreciation of our most senior citizens. (referring to Stages of grief 1950 and Parachute Landing by Albert Burrows)

Fiona Roscoe RN DN MSc BSc(Hons) is an Advanced Nurse Practitioner (Primary and Urgent Care)

schools of nursing

In response to our new book Patience, Advance Nurse Practitioner, Fiona Roscoe has written:

The stark honesty and desperation expressed by a stroke patient in 'Ever' provides a frightening insight into her world. I would advocate that schools of nursing examine their curriculums and ensure that students are given an opportunity to experience the art produced from this project as stopping to listen to what patients are telling us is key to knowing what needs to be done to help them.

Fiona Roscoe RN DN MSc BSc(Hons) is an Advanced Nurse Practitioner (Primary and Urgent Care)

ever

a stroke: it’s like freezing a piece of meat

waiting and waiting and waiting and waiting
a cancellation
put me back again
a slight stroke
couldn’t move my arm
so I lift it with the other one
don’t let it lie dead
rub the back of your hand
keep it going

and then it’s un-frozen

waiting and
try to keep moving
haul yourself
with a walking stick
to your exercises
tried, tired and knackered
they train you, so
if you fall in the house by yourself
trapped

but only in part and some remains

waiting and
trying to open the door
try to get to the phone
try to climb a step, up four inches
(one bad leg, two arms, nothing 100%)
terrifying thinking about it
don’t think, try to
get on, to stand

on ice.

Anonymous
24-31 July 2009

peoples art

In response to our new book Patience, Advance Nurse Practitioner, Fiona Roscoe has written:

Thumbing through the pages of this beautifully edited book your eyes are drawn to the different fonts and styles of expression on every page. What could have been unimaginative streams of text with predictably placed pictures is instead an attractive collection of 'people's art' that would grace any coffee table or bookshelf!

Fiona Roscoe RN DN MSc BSc(Hons) is an Advanced Nurse Practitioner (Primary and Urgent Care)

You can download a sample chapter of Patience at http://www.arthur-and-martha.co.uk It will soon be available for sale at Amazon.

WARD D3

Poet Steve Waling writes about visiting his mother in hospital. This piece was sent to us by Steve in reponse to PATIENCE, our collection of poetry and artworks by older people in hospital.

a bundle of sticks /// writhes on a bed
it’s hard to believe in God /// are there any crackers
mum you’re in hospital /// oh I forgot
visiting hours /// are between 6 and 8

but now you’re here /// are there any crackers
close the curtains /// is there a party next door
pull the sheet back over her /// oh I forgot
ambulance siren /// like a startled cat

it’s the delivery suite /// what’s all that banging
dissociated as to place /// acute serious infection
but now you’re here /// it’s hard to believe in
nurse wipes down plastic mattress /// when there’s such

I saw rabbits on the lawn /// I’m hungry
they should bite the bullet /// just get on with it
she tries to climb out of a sheet /// a bundle of sticks
close the curtains /// are there any crackers

the eyes don’t connect /// no but there’s chocolate
disoriented as to place /// I’ll have some of that
see God in mother’s face /// like a startled cat
is there a party next door /// oh I forgot

Steve Waling's book Travelator is published by Salt. Steve teaches creative writing, occasionally in prisons, and reads his poems in public at any given opportunity. His poems might be described as gentle experiments in intimacy, sometimes awkward and always without pretension. He writes the blog Brando's Hat.

Download Patience

arthur+martha will soon be launching our new hardback book Patience. The art and poems contained in the book detail a wide variety of patients' responses to illness and to being in healthcare. Woven around these impressions are interviews with doctors and nurses.

This book helps ill people realise they’re not alone. What they find difficult may actually be normal. Many ill people have difficulties with tablets, emotions, and disability. It’s the sharing, the I’m not alone that is important. Professor Francis Creed

To download a sample chapter, please visit our website at http://www.arthur-and-martha.co.uk

now my genius has gone

the brain in its
skull-like maze
now my genius has gone
it’s difficult to say
describe everything, list everything

lost everything
(want it back)
can’t remember why I’m here
memory caught in a trap
it stiffens

spaghetti maze
fingers thick
disturbed at all times
keep building roads at the end of a whip
people say they know me

I wonder at it
puzzled, caught in a trap
now my genius is some worthless song
I use a lever a little
and it comes back.

Group
speak poem
12-16 March 2010

Relief

“You deal with pain in your own way.” anon 2008
Some get through with determination, others distract themselves. Some focus on the pain (willing it to get worse in some cases helps to reduce it) some people pray, some people take the drugs offered. Others shut down mentally, still others find that creativity can help to put their troubles outside themselves – for instance, writing or drawing can be a blessing. Often pain seems to come in different guises day-to-day and needs to be met differently.




Relief, yeah relief relief
very much so
a medication to ease
then you can carry on
marring the pain
a blanket over

when you get the pain
you drop right down

say you're standing on a stepladder
then you
drop
take the medication
and you're back on the ladder


anon
17th October 2008

mary/margaret

illness is change
chance
not accepting
a throw of the dice
I’m OK/you're OK
I'm going to live
you too
will not abolish illness
don’t fight
allow it in
be alright here
they’re looking after heaven's latchkey
looking after all the time
a paradise
will not abolish
see them everyday nurses
angels
angelas
feel looked
down up/on
looked after
one of the most important things
I’m glad
Ive got
pair of dice, we
(mary margaret)
the wings to fly to heaven
well looked after
they’re doing their best
couldn’t wish a better
chance angel


Mary, Margaret
31st July 2009

souvenir

there are a lot of souvenirs in my head
raining
the water in lines
falling
the gutters
the line going
I remember everything
an older brother
he was running

the river
boots
running through

it was raining and I remember
the planes passing over
making a boom boom boom
I’d sit on the window sill
curtains drawn in case there was a bomb
watched the children through the curtains
on rainy days

head in a fog
frustrating, confusing, annoying

it was raining and I remember the ground
wet and muddy, I had to wear Wellingtons
splash splash splash
through the
raining and I remember
the old ladies couldn’t go out
so grandma and I went to the pub
to get them guinness

your head in a fog
horrible
because you have it in your mind
but what I remember is right

remember playing by the
river and my shoes falling off and being washed
away
(I didn’t get into trouble but the other kids did)
used to love lying in bed
listening to the rain pattering the window

it was raining and I remember I was
a little devil
when I was young, when it was raining
raining in Alexandria
lightening
and then, for a month no rain
then again, rain really bad
looking out through a window
and swimming far
the fruit of the beach
catch it and eat with a spoon
faraway, the fruit
when it was raining it was raining hard
there was lovely fruit
I was mad, I was a devil swimming
taking the fruit from the rock
the fruit from the sea, rezza

raining women’s voices

branches of trees and old tyres
being washed down
even the baby’s dummy
gutters on roofs overflowing
leaves and pieces of soil run down the walls
cats and dogs
want to get inside

what does it feel like to forget?
it can be confusing, frightening
especially if you’re in the rain
like
getting off a bus
when you don’t know where you are

it was raining and I remember
Gene Kelly singing in the rain
in a musical, a great musical
Gene Kelly dancing under an umbrella as he sang
Morecambe and Wise singing
the same
funny, I remember singing at school with the other children
‘rain, rain, go away, come again another day’
raining and sunshining
I remember seeing a rainbow
remember it poured most of this summer
remember splashing the puddles when I was
a child
getting very wet
having to change and
dry in front of the fire.

Fred, Patricia, Yolanda
11 September 2009

diphtheria

the ambulance bringing
ding a ling a ling

she can remember them ringing
them bells

it was one of the common ones
the cough
a sore throat easily contracted
diphtheria scarlet fever
five years old
the cloth stretching across the wall
my father raised a blade

the ambulance bringing

take swabs
of it the children terrified
isolation hospital
their faces
thought they’d be red
scarlet fever
diphtheria

ding a ling a ling

keeping them apart
lockjaw
didn’t talk
to em too scared
peered through a washroom window
one of the kids saw me said
I won’t tell
remember

them ringing the ambulance bringing
ding a ling a ling

them bells.

Dora Boulton, Frank Bryan, Olive Wilson
Cherry Tree 2009

we all want to get home

nothing to do
nothing doing
pass time sleeping
every few
then tea between

a friend is coming
bringing me wool
knit squares
send them
abroad

keep fingers going

at home
watch telly and so
that’s company
a lady across the road
she pops in

always peopling
can’t go home til
I can stand on my
own
two

and fro on the bus
all in
had a blackout
fall
91 years

don’t know if I’m bettering
long passing
shared my bedroom
one brother and two sisters
winter's cold wool

keep fingers going




May Smith
October 2008

Photo May Smith © Lois Blackburn 2009

migraine

fortnight this time
few times before
me head
very bad heads
suffered from migraines all my life
when the change came
I’m left with

take them as part of life
only you can do it
nobody else can help
take my mind of it
find something to take my mind
plenty of people worse of than me
would swap places
life’s ups and down
money doesn’t come into it
live your life to the full
say to myself people have the same problems
they get over it
have to do the same

pain I know its there
try and shut it away as much as I can
plenty worse
migraines for years
say to myself there’s another one
will go eventually

bad bump when I was a little girl
set them off
got to master it
up to you how you deal with it
walk around with a morbid face
that doesn’t help
people go around like it’s the
end of the world
that doesn’t help

when its coming on think
oh not again
nearly all my head
starts at the front goes around the back
severe pain
go on with it
not a lot you can do until it goes
dull headache
an hour
sometimes one eye goes
know one is coming
just deteriorates
then its gone
the Lord did hear me
let me have a good nights sleep

get mythered about things
get one
have to stop mythering
not to worry

pray to the Lord at night
please free me of this pain
more or less help me
grin and bare it till it went
really feel ill
no way out of it
ask Him to take me many times
but He said no you’ll get over it


determined to get there
nobodies going to stop me

Marjorie Rayner
October 2008


Photo Marjorie Rayner © Lois Blackburn 2009

a pox of this

gout is a condition that causes pain, inflammation and swelling in one or more of the joints. It usually affects the big toe, but can develop in any joint in

in here about four weeks
terrible state I was
knees useless
getting out of bed
wife standing by
couldn’t stop me flying
get paramedics
help me to stand
gentle s-l-i-d-e to the floor
didn’t bother me
knew I’d get up one day
wife not strong enough
(amazing how strong she is)
she was calm

often occurs in attacks that usually last for three to 10 days, after which the joint should feel normal and pain-free again. The attacks are almost impossible to predict and, if

‘if you go down
…’

just slide
gout inflammation of the blood
into the legs
try to pump them out
put a tube down the leg
and suck on it
not painful

not treated, can cause future attacks to be more frequent and last for longer

lack of power
most difficult getting to
the toilet
a gout of this pox


Gerald Manley
/Shakespeare/NHS Choices website
31st October 2008

Amputation

(I’m not depressed but)

I was am
putated
that made a difference
cos I’m reliant
I have good glasses
hearing aid
amput
ation was the worst thing
that’s happened
I’ve got no dates

to rely on
in somewhere like this

the way of life
don’t get as many visitors
the way of
sedentary
dependent
life
adjust slowly
am puttee
(they’re very good to you here
I’m not stopping)
lived alone since
father died
long time ago can’t
think when
it’s terrible don’t think
I’ve got it written
I’ve not written when people
left

I’ve no dates
just addresses

– even got phone numbers –
that don’t mean any
thing to me

(I can’t even remember why you’re here)

the worst was

it slows up gradually
a cold fish cold

I’ll have to ask
never thought to make a note
gosh I can’t remember
(when did the war finish?)

I think my mother died
and I don’t think I’ve got a diary with
those dates
started and
retired gosh
– wait
I’ll get my diary
I’ve not got any dates at all
none that matter.

(I can't even remember why you're here)


Anonymous
2006

Debilitated

crying
with frustration
why
don't you listen?

pain:
why d'you do this?
time
cry with clenches

get up
from your wheelchair
God
-forgotten prayer.

Jean Cheatham July 2009

gammy leg

started out cellulitis

like a rash creams and lotions managed

but you know how it goes

down the leg

on the foot

then they wanted to meet

can’t remember Christmas

my leg

could sit here and cry for eternity

wouldn’t put my leg back

occasionally I forget

roundabouts

going longer between spaces

I have phantom pains

like an itch a weird sensation

I want to scratch my foot

the foot’s not there

try to master mind over matter

can’t scratch phantom pains

sometimes it works

sometimes I still forget

Anonymous 8th July 2009

my eyes they view the afternoon (part 2)

The living day

my eyes they view the afternoon

but when I sleep the floor

try to get up my way

the image shouts

where am I going?

I woke through heavy sleep

in hospital my rest defeat

shadow’s form to ask

everything against your nature

Lynn Holt 1^st July 2009