Feature: 'For the Best' - a play about life on dialysis
8 September 2009. By Penny Bailey
Being on dialysis feels like being on a full-blown four-hour washing cycle and coming out squeaky clean, says one child at the Kidney Dialysis Unit at the Evelina Children's Hospital. Another describes feeling like a cabbage, perhaps alluding to the vegetable-like immobility of being hooked up to a machine for hours at a stretch, and feeling sick, tired and wilted.
These experiences are the life-blood of 'For the Best' - a series of vivid, moving installations and performances, developed from the stories, pictures, songs and poems created by children attending the dialysis unit. The play, directed by Mark Storor and produced by Anna Ledgard, ran for three weeks at the Unicorn Theatre near London Bridge in June 2009. Supported by a Wellcome Trust Large Arts Award, it tells the rest of the world - including the children's peers at school - what it's like to be on dialysis.
People with kidney failure can't filter waste products and fluids from their blood - a task carried out by the kidneys - and have to have their blood 'cleaned' three to four times a week by dialysis instead. The process involves removing the blood from the body to clean it by running it through an external artificial kidney that draws out toxins, chemicals and excess fluids. Children at the Evelina Children's Hospital's special renal unit come from all over the country, several days a week, to undergo this process, which takes around four to five hours each time - making it a massive, albeit vital, intrusion into school and family life.
Depending on the level of toxins in their blood and how much fluid they have taken, the children tend to be very tired when they arrive at the hospital. Four hours later, when they come off the machine, they have been rejuvenated ('squeaky clean') and their parents have a precious half-hour window of opportunity to engage with them when they are feeling alert and energetic, before the tiredness starts to creep back.
Director and artist-in-residence at the dialysis unit, Mark Storor, worked closely with the children and six professional performers to develop the piece - basing everything in the play on what the children told him about their experiences. One child drew a self-portrait with feet made of tulips, for example, and reflecting that, the mother in the play has her feet bound in tulips and ribbons, and dances in them.
The journey
As the play opens in the foyer of the Unicorn, a curtain is drawn back, and small groups of audience members are invited to sit behind it in turn. Once the curtain closes back over them, they are beckoned by a young child in a white doctor's coat to follow. This is the start of a fantastical journey through a disturbing yet familiar landscape peopled with humming washing machines, hissing showers, the warm homely fragrance of cakes baking in a kitchen, and a garden of cabbages and dried beans.
Each scene is populated by members of a family absorbed in various activities usually associated with domestic life, yet with a difference- a teenage girl washing (30 or more) teddy bears in a room full of washing machines, and hanging them out to dry; a mother reading (perched high up on the water pipes facing the wall); a teenage boy playing football (with a cabbage); and a father sitting hunched and fully clothed in a hospital shower while the water rains down, soaking his clothes.
The journey eventually leads the audience groups to a dialysis unit in a hospital, where the nurse (Auntie Nurse) scales a rope up to the ceiling to check the pipes and tubing - her agility a contrast to the young boy hooked up to his dialysis machine.
From there we follow the cast back home to witness the impact of a child's kidney disease on the whole family. The children at the Evelina say being on dialysis is like belonging to another family - a 'haemo family' - because they all spend so much time together on their machines. Hence the 'haemo family' in 'For the Best', consisting of mother, father, the son on dialysis and his sister - each living different aspects of the children's stories.
Because the children spend so much time in hospital, the doctors and nurses become a second family; when the children go home, they leave a part of themselves behind - they are physically, emotionally and intellectually tied to the dialysis machine. Auntie Nurse, a loving and supporting professional, therefore also comes home with the family, crossing into their personal life.
The shadow
The families of these children are living daily with the shadow of disease, death and uncertainty - a fact that is central to the performance, and represented by the sixth performer - Uncle Nightbear, a character who came from one of the children's stories.
Described at the start of the play as "ferocious, angry, poisonous", Uncle Nightbear hovers on the edge of the family, at times mischievous, at times destructive. They struggle to keep him at bay as he tries to pull them apart and draw them away with him, but eventually they welcome him in. At the end of the day, they have to live with the shadow - the children at Evelina are facing the real possibility of the end of life, if they don't get a donor, and ultimately they and their families have to live with that fact.
Its starkness may underlie the vividness and clarity of thought and feeling that imbue the children's drawings and writings - the heart of 'For the Best'. Spending four hours at a time on dialysis, while their whole physiology changes and with limits to the ways in which they can distract themselves, has an inevitable effect on thought, emotion and imagination.
One child observes that while being on dialysis can sometimes leave him bored out of his skull, there are no limits to the imagination, and a wandering mind can travel for miles and miles and miles: "I am a tiger; a roaring, angry, shouting tiger."
The amount of time the children are required to spend on dialysis inevitably impinges on their schoolwork, so they have lessons in the hospital 'school' and even take their GCSE exams while on dialysis - a tough but necessary challenge.
Because they spend so much time away, an important objective of 'For the Best' was to connect the children with their peers in their home schools, from whom they often feel alienated or 'different'. One child who was rarely able to attend his primary school set up a six-week project for his classmates, which involved sending them on a journey to help them understand his experience.
They had to carry out a series of tasks, including making their way blindfolded through a complex maze not once stepping over the line, and dealing with a ferocious tiger (they had to work out that they could sing him to sleep). They didn't always succeed - some had to ask for help and others failed completely. The challenge helped show the children, who are sometimes protected from failure, how hard things can really be in life, and what qualities are needed to overcome them.
Anna Ledgard examines the role of theatre in science education in two previous pieces of work created in partnership with Mark Storor: 'Visiting Time', which looks at what it is like to live with the consequences of genetic inheritance, and 'Boychild', exploring what it is like to be male. Read the PDF [232KB]
Top image: There is no limit to the imagination. Credit: Andrew Whittuck