A film with my illness in it


Cystic fibrosis is hardly a sexy topic for a movie, but Max McGuire’s new film, ‘Foreverland’, tackles CF in depth. It’s strange, though, to see my illness on screen, writes ORLA TINSLEY

AS LIFE-THREATENING illnesses go, cystic fibrosis is not one of the sexy ones. People don’t usually make films or write plays about it, and it doesn’t often feature in works of art. But a new movie, Foreverland, is probably the first feature- length film to tackle cystic fibrosis (CF) in serious depth, in an attempt to raise awareness and make CF accessible to the average moviegoer.

The film’s European premiere is held in the Triskel Arts Centre in Cork this Friday, in conjunction with the CF charity Build4Life and Cork University Hospital, to raise money for a new €1.5 million extension to paediatric services.

When Joe Browne, head of Build4Life and fundraiser for Cork University Hospital, saw the trailer for Foreverland online earlier this year, he contacted Max McGuire, the film’s writer and director, who also has CF. McGuire, a 31-year-old Canadian, will speak at the film premiere.

“I’ve seen everything about the illness, all the documentaries and medicalised stuff, but never anything like this – and think it will help people understand CF,” says Browne, whose 12-year-old son, Padraig, also has the illness.

The charity has raised more than €4 million for cystic fibrosis since 2007. “Parents had been telling me they had been lobbying for 10 years, and I didn’t want to be telling kids in 20 years we’re still waiting. It stuck in my gut and drove me,” he says.

CF is caused by an irregularity in salt transport in the body which leads to thick, sticky mucus building up, most commonly in the lungs, though it affects many organs in the body and has a plethora of symptoms. It requires daily treatment and at times hospitalisation, which is why treatment centres are so important.

Foreverland is a roadtrip movie. After the death of his friend Bobby from CF, Will, who also has the disease, journeys to Mexico to meet an elusive priest and to scatter Bobby’s ashes into a legendary healing salt pond. It is the first time Will has left his hometown, and only with the encouragment of Bobby’s sister Hannah does he agree to embark on an adventure along the Pacific Coast Highway in a car his parents have given him for his 21st birthday.

This intense exploration of a young adult immersed in his illness is inspired by the director’s own experience of the disease.

“I did lose a peer, and it took a while to realise I had to work harder or lose. A consistent drop in my lung function and realising my sister and I were the only two CFers left of our peers made me want to make this,” says McGuire. “This is Will’s first attempt at autonomy and living alone without structure.”

Will tells Hannah the one thing he refuses to do is hope for the future, like a stroppy adolescent hell-bent on punishing himself over future events, such as death, that he has no control over. McGuire links this obsession with death that started in adolescence to the journey in The Wizard of Oz.

“He’s just trying to get back to life, but he can only see what he doesn’t have. How do you get in and how do you get out? Sometimes you have to go all the way to realise Oz is not what you thought it was.”

The roadtrip aspects of the movie are sometimes stereotypical, but the film explores the deepest issues facing people with CF and attempts to tackle them as they come in life, heavy and fast, with no remorse or forgiveness.

Never mind the unsexiness of CF. Lack of sex itself in the life of the main character is one of the film’s prominent themes. As a 20-year-old approaching his 21st birthday, Will is in a deep depression. Instead of going to parties he goes to funerals.

A snappy morning montage shows the juxtaposition of life as he makes pancakes, pops pills and does chest physio that requires him to hit his sides with his hands to move mucus. This method – not commonly used worldwide for adults with CF – is a symbol, says McGuire, of how Will emotionally beats himself up.

As a 25-year-old with the same illness, I find myself wanting to shake Will and tell him to change his thinking. The doctor tells him he is healthy and will remain so if he takes his meds. He resists the mollycoddling from his mother, who is afraid to let her 21-year-old go to Mexico “in case you get sick”, and the attempts by Hannah to help him with daily physio. An exceptional cameo by Juliette Lewis as religious Aunt Vicky, who refers to Will as his mother’s “punishment” for marrying his father, touches on a common ignorance regarding CF.

After a series of events forcing the characters to re-evaluate their path to Mexico, the issue of dependence and being a “surrogate sick boy” is raised as Hannah tries to help Will with his treatment and mission.

The intense bickering here over whether it’s harder to be the sick person or the caregiver needs exploration, but the movie does not investigate this in proper depth, nor many of the other issues facing a young person with a chronic illness.

The romance between Will and Hannah, for example, does not reflect the complex reality of relationships built on bonded grief and common illness.

The movie twists into a cleverly crafted moralistic lesson on the power of how we live rather than how we die. For those living with CF, it’s an important step, and for McGuire it’s a brave one. But it still doesn’t make CF sexy.

build4life.net. Some tickets are still available for the premiere of Foreverland in Cork, and can be purchased at charitycuh@gmail.com

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