I’ve had these moments when I feel so helpless, when I really do not understand the world anymore, when I feel like saying: just leave me in peace. You must know them. Well, I had a few of these today – but then, I also had one of the most amazing conversations as well.
First the frustration.
I received an email (actually yesterday) from a hospital to say they would like to put up the poster of the Saturday event, but would like me to remove the title of the film as it could be problematic for their patients. – Ok, I thought: how to you advertise the Irish Premiere of a film without actually naming it? And then I got a tiny bit angry. Doctors and nurses had told us, us directly and at times in Pádraig’s presence, that it might have been better had he died; that he would not have a meaningful life and that we should consider organ donations; that investing adequate healthcare in him would be just a waste of precious resources. I am sure that none of this was personal. This is the way some (most?) health care professionals think in this country. And a film that names the elephant in the room and tries to provide surprising, positive answers should not be named… The good news is that, after a bit of negotiation, the hospital agreed to put up the posters, with a note pasted on it saying something along these lines…
Then, we got a phone call. A gentleman announced that he would collect the MOTOMed tomorrow as Pádraig’s three months of MOTOMed use was up. There are occasions when you really think enough is enough. This was one of these. I think had that person talked to me I would have told them to stick the MOTOMed up their back side. They didn’t (speak to me) on this occasion, so we questioned this with a therapist who managed to stop the collection. When we asked when Pádraig would get a MOTOMed with arm trainer, we were told that patients like Pádraig would not get one. When we said that another person in a similar position was getting one we were told he had to be assessed as he might not be able for it. When we said that if he didn’t get one soon his arms would get worse and then he definitely would not be able for it (when he had one prescribed and given in Germany more than a year ago) we were told that carers and myself had been shown how to exercise his arms. I should remind you that Pádraig does not get a daily, not a weekly, but a monthly visit by a physio. ONE VISIT A MONTH with minimum treatment that does not last longer than 20 minutes. Young men in nursing homes get more than that. And you thought nursing homes were bad places for young persons with acquired brain injuries. (They are.) With all due respect: I’ve had enough. Really. Oh, one more: we have been told that if we were to supplement the visit/month of physio treatment provided by the HSE with privately paid for neuro physio, the HSE would stop their treatment. The question is: are they serious? Really? The answer is: Very sadly, they are. Worse: they don’t even see anything wrong with this approach.
Here is the amazing conversation.
I got a FaceTime call at around 9am and we talked until 10.45 or so. What’s so amazing about this? Normal. Right? The amazing thing was that the couple I was talking to were in LA. They were working through the night, and it wasn’t their first and will not be their last night of work, to finish off the videos and the An Saol website. And while we were at it, they asked me to send them the project proposal so they could work on a nice layout for it (to be printed for the launch on Saturday) and the dimensions for a pull-out banner, also for the launch. They are doing this work not just for nothing, they are investing their time and money into helping An Saol. I am sure there is a God who sees what they are doing. Just in case he’s not looking, I will remember what they have been doing and make sure that, some day, I can return at least a fraction of what they have given – although I know that this is the last thing on their mind. Even with money, loads and loads of money, we would not have been able to buy this commitment. It is absolutely fantastic, extra-ordinary, and out of this world.
Pádraig is doing fine. But just fine. He is drinking so much better, to a point where I believe that soon he won’t need the PEG anymore even for fluid. He is holding his head so much better and helps when we move him (even a little). He is also making more sounds, still not a huge amount but noticeably more, his voice is coming back very very slowly. He has given a chocolate yoghurt a 5 out of 5, and his lunch a 4 out of 5, and he prefers spuds over pasta. – What he desperately needs is not me, or the carers, doing some exercises with him – he needs a long-term neuro rehabilitation programme designed to support the progress he is making, before he looses motivation or his physical condition deteriorates. So this is not a matter of ‘let’s review this in a month’s time’ it’s a matter of let’s do this now.
I wonder how the bureaucrats in the HSE and the health professionals acting like bureaucrats would act was this their brother or their son? What do you think?
Please don’t forget to promote An Saol Day, 18 June. Please get your tickets for the movie and launch today. Invite your families and friends. We need you there on the day to show our strength and commitment! Like the event on Facebook.