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It is so terribly difficult to do and rather than getting support, everyone says you have to fight the system – I don’t want to fight anybody, I want to work with them.’ – Reinhard Schaler, father of Pádraig Schaler.
THIS DAY THREE years ago, Pádraig Schaler was like many other carefree students on their rite-of-passage J1 summer trips - but his life changed instantly when he was knocked down.
Left with acquired brain injury, he defied doctors’ predictions and survived. His family took him to Germany, where his father Reinhard is from, when they realised the care Pádraig would get in Ireland was not enough.
They have since returned to Ireland, where they have seen Pádraig improve in ways some medical professionals told them would never happen.
But the treatment and support available through Ireland’s health system simply isn’t enough to help Pádraig – his family have had to consistently advocate on his behalf, and ensure he gets everything he needs.
But they know this isn’t enough, and that other families are experiencing the same thing. To help, they have set up An Saol, a centre to provide therapies and rehabilitation for those with a severe acquired brain injury.
“To think something like this could happen to your son or daughter and you are going to be left on your own – it’s shocking,” says Pádraig’s dad Reinhard Schaler, who has been left frustrated at the treatment afforded his son.
It’s beyond belief. It’s medieval what they do with people in nursing homes – it’s a scandal.
Reinhard describes it as “the tragedy of the situation”, that the family had to go to Germany for Pádraig’s initial treatment, and then, when they returned to Ireland, had to go and set up their own organisation to deliver for Pádraig what Ireland’s healthcare system doesn’t.
“It’s unbelievable,” says a clearly frustrated Reinhard Schaler. He details how Pádraig was the first person to leave the National Rehabilitation Hospital who had a stand-up bed. “Everybody with those conditions should have it,” says his baffled father.
Lying in bed is so bad for everything – for your brain, heart, digestion. You have to move, you have to stand. People know that but they just don’t think, they don’t feel that it is worth spending that money and that effort on someone who has severe brain injury.
In order to open An Saol, they need to raise €1.5 million. The pilot phrase of An Saol will involve five people who will be treated in a set-up similar to a day care centre. A family support group will also be set up. The pilot will run for three years and will be reviewed by a panel of experts.
The Great American cycle
The first major step in the fundraising – fundraising has been ongoing separately for the family and Pádraig’s care for the past three years – will begin when Reinhard Schaler and two of Pádraig’s friends travel to America to cycle from Boston to Cape Cod.
They expect to arrive in Cape Cod at 10am on 27 June, exactly three years to the day since Pádraig was knocked down and badly injured.
Though Schaler jokes that physically he doesn’t feel fit for the cycle, he says it will be an extremely emotional trip too.
But the family don’t want to just dwell on the past.
“It will bring the accident back to us really and we are trying to remember what happened there, but at the same time we have to look ahead and plan for the rest of Pádraig’s life,” says Reinhard.
“Maybe rather than be very sad, to try to celebrate that he made it. Because when we were [in hospital in Boston] people were telling us there was no meaningful life and asking for organ donations,” recalls Schaler.
Look at him now – he can communicate, he can eat and drink. He’s still completely dependent and needs 24-hour care and he has very limited movement but he started to move.
At one point, “people said basically he is as good as dead”, says Reinhard.
With Pádraig, and An Saol, the family aim to prove that investing in people with acquired brain injury helps to improve their lives. ”The health system is saying it’s not worth investing in him because he’s not going to get better. He is proving everybody wrong.”
“It’s a scandal”
For the Schaler family, seeing the progress with Pádraig has proved to them that this investment can utterly change a person’s quality of life.
“It’s a scandal – it’s an absolute scandal,” says Reinhard.
“It makes me angry and I don’t know what to do, where to shout from which rooms for people to hear that.”
He says there are healthcare professionals that work with the family who do their best, but often it has to be at their own initiative. “The general service provision for people like Pádraig, it almost doesn’t exist,” says his dad. “It’s very rudimentary and totally inadequate.”
“He has a life and he participates in it”
Over the past three years, Pádraig has travelled, he has met bands, he has gone to events, he has been visited by his dedicated and loving friends.
“He has a life and he is able to participate in it, so he is and he can do a lot of things that people thought he would not be able to do, like breathing without a tracheostomy. The hospital didn’t want to take that out,” says Reinhard.
He can communicate using a special switch, and in a week’s time he will get an eye tracker and a system to allow him to communicate better and to control his environment.
Were it not for the Schaler family, with two parents advocating on their son’s behalf, and siblings behind them every step of the way, perhaps Pádraig would still be lying in a nursing home bed.
“I always thought that I was doing important things in my life,” says Reinhard Schaler, his voice filling with emotion.”It all pales into the background in comparison to what we are doing with Pádraig and hopefully that will also help other people.”
“It is also the worst thing to get your head around. It doesn’t go away. You’d think after three years you’d get used to it, but I don’t think I ever will.”
What Reinhard and all at An Saol are looking for now is support, because without that support they can’t help others. They have set up a website for An Saol where donations can be made.
“While everybody still thinks that people will not recover from such a severe injury, research is showing now that recovery does happen and that it will continue to happen over years,” says Reinhard.
That is really what we want to celebrate when we get there. And give people hope that if something terrible like that happens, they should not give up.
An Saol was officially launched yesterday. To find out more about Pádraig’s progress, visit Reinhard’s blog.
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