Orla Tins­ley

Dar­ragh McManus pre­views the doc­u­men­tary on the fear­less CF cam­paigner’s life

RTÉ Guide - - Contents -

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

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