Teenage dialysis patient Mary Bracken didn't quite know what to make of artist Rachel Tynan when she arrived at her hospital bedside one day last year.
“I wasn’t too sure about this lady coming into me with a blue box and a feather inside. I wasn’t sure what was going on really.” But within 20 minutes they had “clicked” and a story was beginning to develop between the two of them.
They met on Tynan's first day as artist-in-residence at the Children's University Hospital, Temple Street, in Dublin, as part of an arts and health project for teenagers in hospital, run by Helium Arts.
Called Cloudlands, it is about giving adolescents "a voice and a place to be, which is away from their illness", says Helium's director, Helene Hugel.
“We don’t come from the therapy side of things – that is clinical and we are non-clinical,” she explains. Undoubtedly there are therapeutic benefits, but the work is primarily about artistic expression through collaboration.
Online forum
One element of the project is a private, online forum to put teenagers in the three participating hospitals – Temple Street, University Hospital Galway and Cork University Hospital – in touch with each other. It means art, rather than illness, provides the common ground for their communication.
Initially the arrival of Tynan into Temple Street hospital was a welcome diversion for Mary, who has suffered from renal failure for more than four years and needs dialysis three times a week.
“It was something to do, something to focus on – a good distraction,” because being hooked up to a dialysis machine for three-and-a-half hours at a time is “boring”.
It quickly evolved into a fruitful artistic partnership. Being an outpatient, Mary’s days at the hospital – a two-hour journey from her home in Kilcormac, outside Tullamore, Co Offaly – did not necessarily coincide with the times Tynan was in, so they worked “remotely”.
“Every week I would leave her a package and she would leave something for me,” explains Tynan.
Hospital play specialist Olive Kelly says she was the "carrier pigeon" between the two of them. She is full of praise for Cloudlands which, she says, was badly needed as there is little for teenagers in Temple Street hospital, which last year had 1,105 inpatient admissions in the 12-16 age group.
The five play specialists do their best but, stretched all the time and with no designated area for teenagers, it is difficult to engage them. What’s more, there is no Wi-Fi available, which is almost unthinkable to any adolescent these days.
“I like being creative and doing creative things,” says Mary who, through her partnership with Tynan, first created a story about a blue Phoenix and has now written a book of poetry.
Illustrated by Tynan and her friends, Colours of Life is being published this month and will be sold in aid of both Temple Street and Our Lady's Children's Hospital in Crumlin, which Mary had attended for nearly 15 years, after being born with a heart condition.
The poems are about “whatever popped into my brain”, says Mary. The “stress the illness has put me under; the pressure to make sure to remember to take certain tablets. I thought some days I would go insane because I thought it was never going to end.
“It is a good way to express yourself. You need some outlet; some days you are very angry: ‘Why is this happening?’, there is no particular explanation.”
Her mother, Joan, who has been instrumental in getting the book printed, says the project has been “brilliant” for Mary, giving her a huge psychological boost. The oldest of two children, she is in sixth year at Scoil Naomh Cormac but is housebound a lot as dialysis is both physically and emotionally tiring.
On the waiting list for a kidney transplant, Mary was transferred to the adult dialysis unit at Tullamore General Hospital in July after turning 18. There she is in the company of mostly much older people but is treated in a private cubicle.
“Some of the older people are very, very sick so it’s nice not having to be around that,” she says.
Little attention
The hospital experience of young people who are no longer children but not yet adults is an issue that gets little attention.
They are liable to find themselves either in the midst of sick toddlers, in a children’s hospital, or surrounded by much older, very ill, adults in a general hospital.
Teenagers with chronic illnesses such as cystic fibrosis or diabetes may be all too familiar with hospital settings and medical routines, but they have to cope with changes that adolescence brings. They want to be like their peers but have to come to terms with the realisation that their illness isn’t going to allow them to live like everybody else.
"They are like a lost tribe," says Prof Alf Nicholson, consultant paediatrician and Royal College of Surgeons in Ireland (RCSI) professor of paediatrics at Temple Street hospital. There are a lot of adolescent health-specific issues and most big hospitals around the world have adolescent health as a sub-speciality.
“It is a philosophy of care more than anything else,” he says and it goes way beyond just having teen-friendly facilities. Staff need specific skills to help teenagers cope with issues particular to their stage of life.
While their medical needs are paramount, it should be a holistic package, he argues. “The other parts of their care are critical as well.”
The long-awaited new children’s hospital will be an opportunity to provide facilities and care tailored to adolescents. The age range this unit should cover is still a matter of debate but Nicholson suggests it may start at 12, with a cut-off age of 16.
Currently there is no official cut-off age at which ill “children” become ill “adults”.
"Unofficially, hospitals hover around 14 or 15," says the chief executive of Children in Hospital Ireland (CHI), Mary O'Connor. In the three children's hospitals, if you have been a patient all your life with a chronic condition, they will keep you up to 18, but if you present at 14 you go to an adult hospital."
At one end of the scale, teenagers are being cared for in wards decorated with nursery rhymes and fairytales. But there are other, more serious issues, with facilities they have outgrown.
“I came across recently, in one of the children’s hospitals, a young person for whom they could not get a bed big enough so the child slept in a bed that was too small.”
There is also the question of sanitary facilities for teenage girls and the ability to shave for teenage boys, both requiring the necessary privacy and dignity.
Unsuitable facilities
Adult hospitals can also be totally unsuitable for teenagers for reasons relating to the other end of the age spectrum, she points out.
“We have had issues with boys being in beds beside senile and dementia patients,” she says. There have been cases were there has been a death in an adjoining bed and the teenagers were “horrified and terrified by the distress and the noise of the event happening beside them”.
A big thing for teenagers is being able to “hang out” with peers.
At least Our Lady’s Children’s Hospital in Crumlin (OLCHC), where about 22 per cent of admissions are aged 10-plus, has its “Dream Den” for teenagers, O’Connor says. But it is “a million miles” from what they provide at, say, the Necker children’s hospital in Paris, which she has visited.
It has a culture and leisure facility for patients aged nine to 20 that includes a gym, a media room, an art room, music hall and student radio broadcasting two hours a day.
CHI volunteers work with teenagers in the den at Crumlin hospital one night a week.
They try to do things that are interactive, such as board and card games or paired computer games, because they feel the patients have enough solitary screen time the rest of the week.
Tynan goes into Temple Street hospital every Wednesday with art materials packed into a washable suitcase and bases herself in the playroom. The play specialists prioritise the teenagers for her and then she heads to their bedside.
The teenagers prefer to be in their own space, she explains, because there would be a lot of younger children in the playroom.
“Their initial reaction is always ‘Oh I can’t draw, I can’t do this project’. So you spend the first half hour explaining that it is not about drawing. I use my iPad a lot and I have a presentation on it – I show them images from my own work and what other teenagers have been doing in the project.”
That’s usually enough to draw them in – and she has never had one who refused to take part. “They usually open up in giving you ideas.”
She and her fellow Cloudlands artists never focus on the illness, they may not even know what the teenager is in hospital for. “We meet them on a one-to-one level.”
Escapism theme
The themes which emerge are varied but "the idea of escapism comes up a lot and that's understandable when a teenager is in hospital", she says. "A lot of wings, balloons, flying helicopters and unicorns who lived on the moon."
One boy devised a hospital escape game – dressing Tynan in different outfits and working out how far she would get without being caught.
While many like to tell stories, some prefer to create work that visualises their illness or what is going on in their body. For instance, one girl with cystic fibrosis made a “wonderful” pair of lungs with fairy lights inside, each representing one of the “65 roses” – a term used to teach small children how to pronounce the name of their condition.
What has surprised Tynan, as she embarks on the second year of the project, is the positivity of the place.
“You think a hospital is going to be somewhere that is full of stress and despair but it is not like that at all. You come out of there with a smile on your face – between the staff and the teenagers, it is an amazing place to work in.”
Her own artistic response to the experience will be part of an exhibition, Beyond the Box, in Dublin next month, which will include work by fellow Cloudlands artists Emma Fisher (Galway) and Estzer Némethi (Cork). There will also be a section showcasing some of the teenagers' work and images from the project.
Making the invisible visible
"It is really about making the invisible visible," says Hugel. A lot of art-health work is "amazing – but it is all hidden, so it does not become influential".
Tynan believes the most significant part of the Cloudlands project is the relationship the artists build with the hospitalised teenagers.
“The art work is really important and central to that process,” she adds, “but developing these really brilliant relationships with teenagers – where you are getting as much from it as they’re getting – is amazing.”
Beyond the Box will open at Pallas Projects/Studios in The Coombe, Dublin on November 6th and run until November 17th. For more details see helium.ie.
swayman@irishtimes.com
The new cancer facillity will be like a ‘home from home’
The first specialist cancer unit for teenagers in the Republic is due to open shortly at Our Lady’s Children’s Hospital, Crumlin, in Dublin.
The newly renovated St John’s Ward will have its own teenage “den” – a recreational lounge with access to the ward kitchen. As well as chill-out space, it will include state-of-the-art TV, gaming and entertainment equipment.
“The new adolescent cancer facility will be like a home from home,” says a hospital spokeswoman, “helping to create some sense of normality where young people will feel comfortable.”
Technology – the carrot that brings the teens in
University Hospital Galway needs no convincing of the benefit of arts participation for patients, having had a full-time arts director, Margaret Flannery, since 2007.
But initially activities with children were prioritised and she was very conscious of teenagers “falling between the stools”. In the hospital, unless children have a chronic illness, they go into the adult system once they are over the age of 12.
She is delighted that Helium’s Cloudlands has given them the opportunity to “find” the teenagers in the acute system and offer them arts activities.
“Technology is the carrot that brings them in – many young adults don’t want to do traditional arts,” she says.
“I really like that teenagers are able to communicate with each other on the social platform – in other hospitals. There are cystic fibrosis patients here and, because of the bugs, they can’t interact. This is a wonderful way for them to communicate with their peers.”
It is a real luxury, she adds, that an artist can work one-on-one for a full day with a teenager in this project, because usually artists work with a group and only for an hour or two.
Theatre designer, installation artist and puppeteer Emma Fisher “can’t wait” to begin her second year of the Cloudlands residency in the hospital next month.
“The thing that always surprised me is their ability to let you into their room – it is that openness you wouldn’t always get from teenagers.”
It is not the same as if you go into a school or community centre, she explains. “In hospital they are quite happy to get stuck in.” Her main aim is to take their mind off their illness.
“We will try to make some lovely art and tell a story and,” she adds, “if something emerges and that makes them feel better, that’s fantastic. But we have had a bit of fun as well for a couple of hours.”
