Orla Tinsley

One of the good things about this job is that every so often you get a chance to meet some extraordinary people. This young lady is definitely one of them. This is a profile piece I did on Orla way back in September 2008.




After I interviewed Orla Tinsley for this piece, we found ourselves at another event, and, as the Bebo generation tend to put it, we ‘hung out’.
It was great fun. She’s great ‘hanging out’ material. She’s easygoing and full of chat, instantly putting everyone around her at ease.
Some people recognised her from her recent television appearance when she was presented with a Rehab People of the Year award for single-handedly branding the disgrace that passes for services for cystic fibrosis in this country onto the national consciousness.
Anyone who approached her was greeted with an easy smile and a feeling that only some people like Bill Clinton and the last Pope can convey, that for a moment, you are the only thing in the entire universe that matters to them.
But we’re getting ahead of ourselves. Let’s go back to the start, in 1987, when she was born. She grew up in what she cheekily calls ‘Kavanagh Mountains’ - an area of Hawkfield, near Newbridge, where members of the local Kavanagh family (including her mother) have built houses along a slight rise in the road. There, surrounded by her extended family she grew up and attended Scoil Mhuire National School and the Holy Family before starting in UCD three years ago, where she’s studying English and Ancient Greek and Roman Civilisation.
She’s in her third year there, and loves it. She especially loves English and dreams of becoming a writer when she graduates.
So far, so normal. Except that it’s not.
Three days after her birth she was diagnosed as having Cystic Fibrosis. CF is a hereditary disease affecting the mucous producing glands of the lungs, liver, pancreas, and intestines.
She became aware of the reality of the disease when she was about five or six and a girl whom she was friendly with in Temple Street Hospital, died.
“And I thought, oh God. I remember recognising something. It brought it home to you.”
Young Tinsley is nothing if not forthright when she wants to be and she makes it clear that she hates pity, and that despite the nature of her illness, there is nothing sad or morose about her.
“I hate people thinking that if you experience death you’re going to be sad and have a sorrow about you.”
With her childhood punctuated by hospital trips (a common theme for those with CF who are more susceptible to infection than most) her education was often split between lessons in the Temple Street Hospital and her schools in Newbridge.
Some other normal childhood activities were not engaged in – like getting exercise.
“I’m glad you brought that up,” she says. “Up until about 10 years ago it was believed that people with CF shouldn’t be playing sport.
“It was also suggested that you should have a non-fat diet, but actually that’s detrimental. “While the pancreas can’t digest fat, we take enzymes to digest it. But the better your weight is, the stronger you are to fight infection that comes along.
“However, as you get older with CF you start to lose bone density - and a way to counteract that is with exercise.”
“Up until last January, I mentally couldn’t get my head around the idea of exercise - as is the case with a lot of students.”
But under the guidance of her physiotherapist she took up weight-lifting and running, with which she is now happily obsessed.
“When I started, I could run for one minute and now I can go for 30 minutes. I’m doing a 5k run in October.
“I love running; it’s totally created a new perspective on life for me. It clears my mind, not to mention my lungs. It feels so great that I can do it. Running has made me so much more aware of my own body and my digestive system and the utter absolute importance of being hydrated. You need to eat complex carbs, and not going to three lectures without eating isn’t a good idea.”
Generally speaking, eating is an issue for those with CF. One of the aspects of the condition is that the over-production of mucous interferes with the body’s ability to absorb nutrition and energy from food. As a result people with CF often have Michael Phelps-like appetites.
“I’m a chocolate fiend and a sucker – literally - for fizzy sweets.
“There’s a team of people who look after us, including a doctor, physio and a dietician. They can give you shakes with 700 calories in them.”
However, the importance of keeping weight on and eating enough is not an issue for Orla. “I never think of it, because I love food.”
Her situation is complicated because she has diabetes. “It’s tricky. I have to be careful, but generally I eat what I want, when I want.
“For instance, when I’m in hospital - and I’m not saying it’s all fun and games – but I order Chinese at night time. And I eat a load of Diet Coke and Pringles.
“People know not to bring me fruit!”
Once she turned 18 and therefore became an adult, Orla’s time in Temple Street came to an end, and when she required hospital treatment, it was to St. Vincent’s hospital she went.
“The thing about being in a children’s hospital, is that it’s geared towards the kids. There’s a playroom and distractions throughout the day. There are clowns and cartoons and famous people visit you, so it’s very interesting.
“When you move into an adult hospital there’s nobody entertaining you, so it’s a bit of a culture shock.”
But if that was her only complaint, it wouldn’t be so bad.
“You go from being the oldest person in the ward, to being in a room with five other people, the majority of whom are elderly, or you end up in a psychiatric ward.”
When people with CF go to hospital to recover from infection they need, obviously, to avoid any further infection. That means having their own en-suite room on a special ward with appropriately trained staff.
Up until August 2008 there were only two beds for 300 CF patients who attended St. Vincent’s. For 20 years it was the designated CF hospital, and there were plans to develop a unit, which came to nothing. Orla knows of a fellow patient who was asked, 10 years ago, to be in a photo-op to announce a new building that was never built.
In her late teens Orla found herself in wards with elderly or psychiatric patients. She has written about having to walk elderly women with dementia back to bed, of fellow patients crying and coughing all night, of not having simple things like pillows and of beginning to wonder if hospital was probably the worst place for her.
It was the Irish Times who took up her plight and gave her a platform from which to campaign for better services.
"The idea that someone is poor, fragile, incapable and not in control of his/her destiny terrifies me. Yet right here, in this shambles of a health system, the reality is that what we fight so hard not to become has become us, uncontrollably so.
“We deserve freedom from infection and from the poor, confused woman who you constantly have to guide back to her bed because there is nobody else there to do it.
“As I lie exhausted in bed and listen to the coughs around me, I think of all the people with cystic fibrosis in hospitals right now who fear for our lives. I think of how detached from the situation those in power must really be and I struggle to understand the utter stupidity of their inaction.”
Ah yes, inaction.
All of this would be, if not excusable, then perhaps vaguely understandable if CF was a minor problem in Ireland.
“We seem to have a more aggressive strain of it than anywhere else in the world. It’s something to do with the famine,” she explained.
“We have the highest incidence in the world and it’s the most commonly inherited condition in the country.”
Ireland also has the highest rate of CF carriers in the world. One in every 19 Irish people carries the gene.
In reality Ireland has every good reason to be world leaders in all things CF.
“But we’re not.”
There are two things to say about her writing. The first is that it ignited a national debate, a wake up call to a smug nation, Government and Minister for Health, and eventually action in the form of eight single en-suite beds in St. Vincent’s as an interim measure established last month.
If they go well, there could be six more added.
By 2010 there will be a fully equipped, fully and appropriately staffed unit, but with 20 beds.
“We need 32 beds,” Orla says. But she’s happy that they will be ringfenced – only available for people with CF.
The other thing was the Irish Times and their readers’ noticed was that the then 20 year old had an extraordinary talent with the pen.
Letters to the editor described her writing as ‘profound’and ‘eloquant’, and the newspaper, like all newspapers on the lookout for new talent, have retained her services and kept her busy.
She now writes for them about things that have nothing to do with CF, which is exactly where someone with talent and dreams of being a writer wants to be in their third year in college. Recently she had a piece responding to overblown media reports of general debauchery in college.
After college, she’s hoping to sustain her career in journalism and writing.
But for the time being, she’s living in Clonskeagh with a five month old cat called George and two friends. “He’s very clever. I think pets know instinctively when you’re not well.”
And she’s still an ordinary 21 year old who got a huge thrill when she met one of her heroes, Andrea Corr who presented her with her award on Saturday night, September 13.
“She’s absolutely lovely, gorgeous. We chatted several times that night.”
With a sponsored dress from Rococo, a boutique beside the Westbury Hotel she “felt like a princess!”
But the dress’s length proved a difficulty getting onto and off the stage.
“Going up, I was trying to hold my dress up, and all I was thinking was ‘Andrea Corr is on the stage, Oh God!’ I was so overwhelmed that she was there, but I felt pretty comfortable once I was up.
“We had to walk down the ramp together afterwards, and I said to her: ‘How are we meant to get down?’
“She said: ‘I’ll hold onto you and you hold onto me’.
“And we shimmied down the ramp!”