Darragh McManus previews the documentary on the fearless CF campaigner’s life
Orla Tinsley is a survivor. She was born with cystic fibrosis, the life-limiting condition with no cure. But like ever more people with CF, she has survived with the disease for far longer than doctors could predict when she was a baby – in her case, for 30 years. She continues to fight CF and to achieve significant victories. After watching the aptly titled Orla Tinsley: Warrior, you’ll understand how.
The new RTÉ documentary by producer/ director Sally Roden opens and closes with a shot of Orla in a New York museum, gazing up at a statue of an Amazonian warrior. The two images of women aren’t so different: they’re both resilient, determined and most of all, fearless. “We should laugh at death,” Orla says. “We should respect it, but laugh at it. It’s everywhere.” Orla was born in Co Kildare in 1987, to Brian and Patricia. She first came to prominence in June 2005 when, at the age of 18, she began writing a newspaper column about her experience of living with cystic fibrosis in Ireland. Her years of campaigning had a significant effect on services, for which she was honoured as Rehab Young Person of the Year in 2008.
The following year, she made her first appearance on The Late Late Show (but not her last) and was named Irish Tatler magazine’s Woman of the Year. In 2010, she was named Young Medical Journalist of the Year in the prestigious GSK-sponsored awards. In 2011, she presented a documentary for Prime Time about proposed changes to CF services at St Vincent’s Hospital in Dublin.
She has also written a bestselling memoir, Salty Baby, which was shortlisted for Best Newcomer at the Bórd Gáis Irish Book Awards. Meanwhile, her campaigning continues, with her recent work for transgender rights being honoured with the Broadcaster/Journalist of the Year Award at the GCN- sponsored GALAs in 2013. During all of this time, the shadow of CF hung over her life. Following her pressure on the government, funding was found to supply a revolutionary drug called Kalydeco (ivacaftor) to Irish CF patients in 2013. The same year, Orla became one of the first people in the world to be treated with another new drug, lumacaftor, which can improve lung function and the overall health of patients. Unfortunately, none of this was quite enough in Orla’s case and when we join her in New York at the beginning of the documentary, her condition is worsening. She is on a scholarship at Columbia University, to do a Master’s in creative writing. She says her time at the prestigious university, “gave me a new way of looking at the world and myself, and gave me the space to grieve the deaths of my friends.” She was also on the transplant list at New York Presbyterian Hospital. With the support of her family and friends, and with the hospital’s world-class care, Orla battles on as her health deteriorates throughout 2017. Over the course of 14 months, the documentary follows her daunting journey. She waits desperately on a donor for a doublelung transplant, but her life is a dance on the edge of life or death. The sicker Orla becomes, the more likely she is to shoot up the transplant list. At the same time, the more likely she is to become too weak to get the green light for a transplant. She may not survive the operation or live long enough for a suitable donor to materialise in the first place.
Orla recognises the irony of this situation. “It’s a funny thing to hope for, because for you to live, it means that someone else has to die. But I know (when it happens), I’ll feel gratitude to them.”
Because her lung capacity continues to diminish, Orla has to ferry around a three-litre oxygen canister at all times. Her parents take it in turns to stay with her in New York. Patricia is stoical, saying, “It’s in the hands of the gods”. Of the donor who will hopefully save her daughter’s life, she says, “It’s very sad, but they’re giving the wonderful gift of life.”
Orla’s friends are here too: Quentin, who lives in the US, and childhood pal Dave, who has flown over to New York and remembers his first visit to Orla’s house, hearing her “coughing all night,” and how terrifying that sound was. Then there’s the chance of a donor and the lifesaving operation, but Orla’s hopes are dashed. It happens again: once more, someone else gets those precious lungs. The documentary captures the disappointment and ever-present hope as this happens an incredible six times.
At one point, Orla admits that “the next infection could kill me.” She can’t go back to Ireland, as she’s too weak. In November, she starts coughing up blood, but declares, “I feel like I’ve had a great life.”
Finally, just after Christmas, a breakthrough. Orla begins taking anti-rejection drugs in preparation for the long-delayed operation. Her parents are both in the hospital, telling her how much they love her as she’s wheeled into theatre. And it works. The transplant takes, although she’ll have to use anti-rejection drugs for the rest of her life.
She’s since described it all as “nothing short of a miracle,” adding that she feels “like a teenager again. I have so much strength, it’s so amazing. I didn’t realise how much I’d lost.”
Last month she tweeted: “8 months and 2 days of new life. Life I would not have without my selfless donor. Without her I would not be writing this tweet, I would not be breathing this air, I would not be preparing for fall semester. Thank you, donor.”
It’s a funny thing to hope for, because for you to live, it means that someone else has to die