Thursday 14 November 2019

Amazing courage of friends who don't cry out in despair

It has been a privilege to be close to so many cystic fibrosis ­sufferers and their families, writes Joe Brolly

Paul Wynne with his wife Ciara and daughter Ella (2). Photo: Gerry Mooney
Paul Wynne with his wife Ciara and daughter Ella (2). Photo: Gerry Mooney

In 2009, Andy Grant's left leg was blown off in a bomb attack in Afghanistan.

The Royal Marine was lucky to survive. Last month, he won two gold medals in the Invictus Games and is challenging for a sprinting place in the GB Paralympic team. A passionate Liverpool supporter, when he was a teenager he had his leg tattooed with a Liver bird and the words "You'll never walk alone". Since the amputation, it reads "You'll never walk". Interviewed recently by the BBC, he joked about it and said: "You've gotta laugh, mate, you really have."

When Christ was crucified, at the ninth hour, he cried out "Eli, Eli, lama sabachthani?" According to the gospel of Mark, it was "Eloi, eloi, lama sabachthani?" - "My God, my God, why have you forsaken me?" In the original Hebrew, it is perhaps the most powerful phrase in any language. Christ, the classic underdog, crying out in despair.

Andy Grant didn't cry out. Nor did Ryan O'Connor from Dungiven, my home town. The teenager had a heart transplant in the nick of time. For a few days, everything was smooth. Then, blood began leaking into his legs and he was taken back to theatre. When he awoke, his legs were gone. When his mother texted me the bad news, I thought of Eric Bogle's anti-war song, And the Band Played Waltzing Matilda. The disabled hero is shipped home from the war and when he arrives at the docks, he says: "I looked at the place where my legs used to be, and thank Christ there was nobody waiting for me, to weep, to mourn, and to pity."

Like Grant, O'Connor didn't cry out in despair. Two years on, he plays for the Ulster wheelchair hurling team. "It's f***ing madness, Joe," he told me when we chatted at Christmas, "I love it." The occasion was a sponsored walk to raise money for a new wheelchair for another young fellow from the town, Chris Keeley, who is blind and severely disabled. O'Connor did the walk wearing a Santa hat, with his wheelchair bedecked in Christmas tree lights. "Jesus Joe," he said to me as we walked, "Chris is in bad shape." From the boy with no legs and a new heart.

The journey I have been on in the last three years means that I get it now. Before donating a kidney to a man I barely knew, I had empathy in the way most of us have it. Like the Rose of Tralee, we want things to be good for people. We don't want people to be poor or ill or addicts. We'd quite like world peace. But it is not real. What I have learned is that when people suffer, it opens them and those closest to them to the suffering of others. They feel it. They no longer just think it. It is the beginning of real love. It is what Christ meant when he said "love thy neighbour as thyself."

Last week, Cystic Fibrosis Ireland launched their new fundraising drive. It is called 65 Roses because this is how children with this terminal condition are taught to pronounce it. It is a horrific thing. Caused by a mutant gene, the body produces thick mucus. The lungs malfunction. Eating becomes a battle. Enzyme tablets have to be swallowed before every meal. Eventually, when eating becomes impossible, pulped food is administered through a pipe into the stomach. The other organs deteriorate. The body is in constant pain. It is a slow and agonising disintegration. There is no cure, though a double lung transplant will transform and prolong life.

I am privileged to be Cystic Fibrosis Ireland's ambassador. And doubly privileged to be close to so many sufferers and their families. What I see, always, is empathy and love. Mothers living in hospitals on recliner chairs, spending months on end there with their children. Soothing them, tending to them, and all the while concealing the terror they must be feeling.

Gary Dillon, a young man from Sligo, affected me in a way that is impossible to describe. A CF sufferer, he danced as if no one was watching and "lived like it was heaven on earth". The transplant call never came for him.

A few weeks before the end, we went to Strandhill together and took pictures of the sunset. Gary could barely breathe by then. He was like a frogman, with two oxygen cylinders attached to his back. A fortnight later, I saw him for the last time, in intensive care in St Vincent's. The blood was seeping from his eyes. The tears from mine. Grasping my hand, he pulled me in close. "Don't cry for me, Joe. I've had a great life." Fighting for breath, he whispered: "I've something for Rory. Mam will send it to him."

At his ninth hour, the dying man was thinking of my son. A few hours later he was

See Joe Brolly's column, Sport p7

dead. A week later a package arrived at ours for Rory Brolly. It was Gary's beloved Calry St Joseph's GAA jersey.

Just around that time, Gary's close friend Gary Dempsey was running out of road himself. Then, a miracle. He rang me in the early hours. "Joe, I'm ­getting a f***ing transplant," he wheezed. My heart leapt.

The new lungs, donated by a grieving family, worked a treat. Last September, just six months later, Dempsey pulled into our driveway on All-Ireland final morning, beaming from ear to ear. No oxygen tanks. No arm around to steady him. We drove to Dublin together and had a pint before the game. Sitting there, soaking in the moment. Smiling. Alive. There is no cure for cystic fibrosis. But in the last ­decade, fundraising by CFI has enhanced and ­prolonged the lives of sufferers. A ­network of state-of-the-art clinics has been built all over the country, mostly as a result of community fundraising. It has been a labour of love.

These clinics are of critical importance, because with the recent improvements in the lung-transplant programme at the Mater Hospital, the number of transplants is steadily increasing. The longer CF patients can be kept healthy, the better the chance of life.

The 65 Roses campaign is a beautiful thing. Text '65 Roses' to 50300 for a purple rose. Better still, organise a fundraiser. Bake 65 apple tarts; 65 of you can parachute out of a plane; swim 65 lengths of the pool. Whatever. The money is welcome. But equally important is the love and empathy. A reminder to our desperately ill brothers and sisters that they will never walk alone.


*'Before the op, I wrote a letter to my unborn child'

Paul Wynne, who was at the 'end stage' of cystic fibrosis, says a daily thanks for the chance to see his baby, writes Allison Bray

Every day for the past two years, Paul Wynne has said a silent thank-you to the gracious donor and their family whose selfless donation of a set of lungs has literally allowed him to live and breathe.

The 30-year-old sales assistant from Laytown, Co Meath, was born with cystic fibrosis and was at the "end stage" of the disease a little over two years ago when even bending down to put on his socks would make him winded.

But after his life-saving double lung transplant at the Mater Hospital in January, 2013, Mr Wynne and his wife Ciara, (32), celebrated their daughter Ella's second birthday last month -even though there was a time when his chances of seeing his daughter born were slim after he was put on the lung transplant waiting list in 2000.

"Before I got the call, I sat on the side of my bed and started writing a letter to my (unborn) child. I was afraid I wouldn't get to see her or be able to do the usual things I would do with a child. Then, low and behold, the call came through," he said of the lung donation.

His daughter was born a month after the operation. And thanks to the surgery and pioneering new drugs, his prognosis is looking very good and he can look forward to seeing his daughter graduate from secondary school, if not college.

"I'm fantastic. This is the first time I've been able to work in years," he said.

Although the survival rate for lung transplant recipients are improving all the time, he still doesn't take anything for granted.

But he is optimistic and just takes one day at a time. Yet he never forgets to thank his donor and their family for giving him that day.

"I wouldn't be able to see my baby without them," he said.

Sunday Independent

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