If you missed last night’s first An Saol Seminar, you missed a real opportunity not just to find out about how to access HSE funding to pay for treatment abroad, but also an opportunity to listen to one of the most amazing, moving, and infuriating accounts of how a young man with a severe brain injury has been treated you’ll be likely to hear.
Where on earth does a family whose son is struggling for his life and who is desperately trying to cope with this new and incredibly difficult new situation, where on earth does a family have to take on a health system that is supposed to help them but seems to be determined to do the exact opposite of what it is supposed to do?
A health system that is fully aware of the fact that its services are not adequate – yet some of its key employees telling the parents that all their son’s needs are being looked after appropriately?
A health system employing senior staff that is telling the parents that all their brain injured children needed was hydration, medication, and nutrition? Maintenance.
Many years later, last night, the father was still so moved recalling what their son and they had to go through (and are still enduring) that he found it almost impossible to speak at times.
To be honest: I don’t like talking about a ‘system’ because the term is often used as a smoke screen. ‘Systems’ are not autonomous. People are. People design and implement systems. So if a system doesn’t work, it’s the fault of people – and it is in their power to change it.
To be fair: there are people who are trying really hard and who are doing the best they possibly can. There are people (working inside and outside the ‘system’) who are brilliant, supportive, compassionate and extremely professional. But they are fighting a lost battle. We need change.
Where’s the change we so desperately need going to come from?
The answer is, to paraphrase Obama (I think): WE are the change we have been waiting for and WE have to provide the help our fellow citizens need to desperately.
I am on my way to commemorate my mother’s first anniversary. This morning at 6.30am when I was about to go into the airport, there was a woman sitting beside the door. She tried to get my attention and I almost walked by. When I stopped she asked me whether I had a light for her cigarette. (Luckily, and I know how funny that sounds, I always carry a lighter in my pocket in case someone asks me that question – I still remember what it feels like to have a cigarette and no lighter to lit it.) When we managed to light her cigarette in the morning breeze after a few failed attempts she said, “You know, people just walked by because they thought I was a knacker – I’m not. I’m just drunk.” Thing is, there are no ‘knackers’. Just people who need our help.
PS: I spent some time with Pádraig yesterday talking about the plans for An Saol, the pilot project, and the fundraising we are planning for it. I asked him whether these plans were ok with him. Whether he was ok with us using his story, pictures, videos of him to tell the world that a brain injury, even a severe brain injury, is not the end; that if you keep trying very hard and if you get the right kind of help that you can get better and start to enjoy life again. He said that he was ok with all of this. Apart from working for his own recovery, he might just be in the process of discovering a new mission in his life, one that is more important than anything he could ever have imagined when he was planning his trip to Boston about three years ago, wondering what he was going to do after finishing College.