“When you’re going through hell, keep going” – the famous Winston Churchill once said. And what first sounds like quite a strange bit of advice, does make an awful lot of sense on second thoughts. Because, what would be the alternative to “keep going” – not a pretty prospect!

So I’ll keep going in the belief that this will have an end.

(There is a really funny saying in Germany, and I hope you appreciate the delicate humour, that goes like this: “Alles hat ein Ende, nur die Wurst hat zwei” – Everything’s got an end – only a sausage has got two.)

Second day without Pádraig’s carers, or: PAs (=personal assistants). Second day in a house that is so much quieter, so much less stressful. It’s a strange thing to say because this is not the way it’s supposed to be. We decided that we all needed a break. They’ll be back on Tuesday.

In the meantime, we are figuring out how to use the shower chair. How to use his shower. (The one task that, strangely, the service provider has not problem with.) Pádraig is enjoying the shower so much, it’s wonderful. I’m sure we’ll have the shower-thing figured out within a few days.

A few years back, I was cycling back home from the train station (I had just returned from Limerick), through pouring rain, wind, and cold, listening to music. It was an unusual mix of music. All of a sudden, “Oh Haupt voll Blut und Wunden” (Oh Sacred Head, Now Wounded) with Bach’s music came up on my playlist. It was just before Easter and it made me think of the passion which, as I cycled, became to represent life. A constant fight. Pain. Friends along the way. Strangers who lend you a helping hand when you fall. They offer to carry the cross for a while. They offer you relief, at least for a while. In the end, however, you’re on your own and wonder, why God has forsaken you! You die. And then, you rise. Life goes on. Always.

When I told this, what was quite a, spiritual experience to a friend, they thought I must have been a bit depressed to look at life that way. But I wasn’t.

This is a dark night. I will not stop, however. I’ll get through this. And tomorrow, just in a few hours, it’ll be Easter. The day of our victory over darkness. A new beginning.

Fixing up a room can be heartbreaking. We found things almost forgotten, from his trip to the Cape, a note with details of what he had planned to do after coming home. All of a sudden, memories turned into reality again.

Behind his bed, just over where his head would have been, hangs a sheet of paper with a poem.

You’ll probably know the last verse:

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.

What can I say.

Pádraig had two visitors today, one of whom he had never met before and the other he had missed for a time because they were abroad. He shared one of his really nice broad smiles with them. What is it like to meet friends you had loads of fun with on the road less traveled?

Johnny Nash went (he sang the original). Jimmy Cliff and Bob Marley went (both had a cover version). But it was when I heard the Hothouse Flowers had gone (their cover version was played the other day on the radio) that it clicked. This is true Dreamboater stuff.

I can see clearly now, (the rain is gone)
I can see all obstacles in my way
Gone are the dark clouds that had me blind

I sent an email to the Hothouse Flowers asking them if they would support the An Saol campaign this year, contribute this song and, maybe, join a concert.

I think I can make it now, the pain is gone
All of the bad feelings have disappeared
Here is the rainbow I’ve been prayin’ for

I reminded the lads that Pádraig went, like they did, to Coláiste Eoin and that Liam Ó Maonlaí contributed to a phenomenal fundraising concert that raised the roof of the school’s big hall in 2013… and for which we are still immensely grateful!

Look all around, there’s nothin’ but blue skies
Look straight ahead, nothin’ but blue skies

It was a busy day today for Pádraig: a visit by two community physios in the morning and the community SLT in the afternoon. Tilt table and exercises.

But the best came with the confirmation that a slot had become available in Pforzheim in the second half of April – and even with his favourite therapist! What a boost this is!

We had to cancel a slot in Pforzheim in January, because the move home from the NRH to quite a bit longer than I think everybody had anticipated. Pádraig as another few weeks booked in August/September, but that is such a long time away!

So, once we’ll be finished with the Easter Eggs, we’ll start training for four weeks of boot camp. I can see all the obstacles in my way. All of the bad feelings have disappeared. Here’s the rainbow!

Wait a minute, baby. Stay with me awhile… {What a great line.} Drowning in the sea of love. Where everyone would love to drown. {For all who ever felt loved.} You’re the poet in my heart. Never change. Never stop. {Waaaahnsinn!}

Stevie Nicks must be one of the world’s best ever singers, in one of the world’s best ever bands, and Sara must be one of her best ever songs.

The first time in a while that I am sitting here in the evening listening to music. I am always surprised by the power of music. It sets my mood. It transports me into a different time (not surprisingly, wherever it transports me to, I am always younger:).

Today was Wednesday – Excursion Time. A bit “thank you” to two good friends who travelled with us in the car and made this excursion possible! (They could do this without a health & safety risk assessment:)

And where else would you go this week but to a 1916 exhibition. We went to the one in Collins Baracks, where the National Museum of Ireland marks the centenary of the 1916 Rising.

It’s really good and well worth visiting. I even found an exhibit that was made by one of my fellow countrymen a hundred years ago and put up in the battle fields of Flanders.

Pádraig is getting fitter again. One of the carers helped me to move him into the tilt table before he had to leave. Pádraig and myself managed the standing up part and the transfer back really well. What I like about this time together is that – it is our time together without anyone or anything else to worry about. It’s a time I will always treasure as something really special.

Stay with me awhile. The poet in my heart. Never change. Never stop.

Health and Safety. For whom? – Risk Assessment. For whom?

The above is Burdock’s Famous Fish&Chips Shop reassuring their customers that their Fish Burger actually does contain… FISH! And that it may also contain… FISH! This is all about health and safety and risk assessment. Because if you have an allergy against fish and you buy a fish burger in Burdock’s, you eat it, and die of it –  they will be able to say:

You have been warned!

Tonight’s blog turned out to be a bit longer than usual and then planned. But I thought it would be worthwhile sharing how ‘health and safety’ regulations and ‘risk assessment’ procedures can defy any common sense and, in practice, often amount to (at least a partial) denial of service if complied with. At least in our case.

So, read patiently on and let me know what you think. (And please keep in mind that none of the following is meant to be in any way a personal criticism of any one person in particular.)

We learned a day or so ago that for Pádraig to be transferred from the bed to the wheelchair three carers would have to be involved to comply with health and safety regulations based on a risk assessment. Now, there are never three carers in our house at any one time (except once when there had been a scheduling misunderstanding). There are not enough buttons to press and limbs to hold, there is not enough room for three carers to become involved around Pádraig’s transfer. To put it into perspective, they had been doing this for weeks with two carers; I can transfer Pádraig safely on my own, and so can other family. So whose health and safety, whose risk are we talking about? What are the carers there for if they cannot perform one of the very basic tasks ever, the transfer, because there won’t ever be enough of them there at the same time?

We bought a tilt table. Not because we wanted to but because this was the only way to get Pádraig standing up on his feet. For months. It’s a tilt table with the European CE mark showing it is approved medical equipment complying with European standards and regulations. Pádraig had been standing before in a standing bed, in an EasyStand, in an Erigo, and in a Lokomat, and there was no issue there with him standing in a tilt table. Now we have been told that Pádraig’s carers are only allowed to assist with the transfer from the bed to the tilt table because it’s similar to the transfer from the bed to the wheelchair. They are, however, not allowed to hold his head while he is in the tilt table because… well, because holding his head in a tilt table is apparently different from holding his head in the wheelchair, when helping him to eat, when he is in the hoist. Something (I’m not quite sure anymore what) will have to be assessed to ensure all health and safety regulations are observed and there is no risk. Risk to whom? (You will remember that one of the physios called Pádraig’s GP because she was concerned about his oxygen levels – when Pádraig had not stood for months. If that was not a health and safety issue – and, indeed, an utterly unnecessary and grotesque risk for Pádraig! You don’t need to be a doctor to know that not standing for months is really, and I mean: really, bad for your health.) So, risk to whom and of what?

As you know, friends donated their mother’s wheelchair car to Pádraig when she had sadly passed away. In order to get the car insured, I needed to get an engineer’s report vouching for the car’s and its appliances’ safety. As you will also know, we drove Pádraig from Hamburg to Pforzheim and from there to Cherbourg and Dublin. When I wanted to bring Pádraig to his childminders and dear friend’s funeral not too long ago, the carer on duty refused to accompany us in the car – so we walked. It has now transpired that carers are not allowed to accompany the person they care for in a car unless this car has been assessed to ensure all health and safety regulations are observed and there is not risk. Risk to whom?

Pádraig recently got a new shower chair, a ‘device’ we have not used very often in the past because in Germany it was not practical. Pat and I have started to use it with Pádraig now and he is really enjoying it. We are still working to try and find the best possible way to operate the hoist, sling, shower chair and towels. Strangely, there is no problem from the ‘health and safety’ and ‘risk’ point of view for them to use the shower chair. Although – until we have figured out ourselves how to use this, we will not allow the carers either.

Carers are not allowed to clean (although some things they are allowed to clean – I’ve just lost track of what) but they are allowed to stand in for physios and OT. So, not only are there no trained neuro-therapists available to provide regular treatment a number of times a week, carers – not trained and not qualified in therapy – are asked to stand in. I see serious health and safety issues, as well as great risk for Pádraig here.

There is no common sense in any of this. One thing is a funny sign warning customers that there may be fish in a fish burger. Another thing is a very serious perversion of what health is all about, what safety is all about, and what risk is all about.

And anyway – (most) people are smarter than senseless regulations. They know that fish burgers not just may, they actually do contain fish. And if they’re allergic to fish, they don’t eat fish burgers. Sign or no sign.

What do you think?

If you are free and would like to go out with Pádraig and myself tomorrow for our Wednesday outing at 2:30, please let me know.

Yes, yes, yes, yes, yes… I know. Chocolate muffins are really irresistible, but butternut squash is so infinitely more healthy! I don’t think Pádraig ever had butternut squash ever before the accident, today was the second time after it. Thinking about it, and leaving the mystic chocolate chip muffin aside, Pádraig is really the one in our family eating really good and fresh-made meals on a fairly regular basis. So no more supersized double-chip fine chocolate filled chocolate muffins:)

We had a longish meeting with Pádraig’s ‘service provider’ coordinator trying to explain that the many different layers, the many people, and the complicated structure of Pádraig’s care really made things more difficult than they needed to be. We are spending an insane amount of time we don’t really have connecting and coordinating with all of these. Common sense doesn’t really come into the equation. (Carers, for example, can transfer from bed to wheelchair. They cannot assist me with the tilt table.)

Oh – before I forget: you won’t believe this, but on 10 March, the HSE ordered the standing bed and mattress. It should just about four weeks to arrive. Then, before we and the carers can use it, we will need someone to do a risk assessment and to organise a training session. To be sure to be sure.

Too tired to continue tonight…

It’s really bad for you. It can have more than 500 calories. So stay away from it.

On the other hand, it tastes really good. I mean, REALLY good. And imagine, just imagine, how good it would taste if you hadn’t had one for almost three years!

WONDERFUL!

One of Pádraig’s friends visited this afternoon. And what did he have in his bag? – You guessed it. Chocolate muffins. They were not mashed. They were not of any particular grade. They were just big, sumptuous, chocolate dripping, muffins.

When we asked Pádraig whether he would like one, he said ‘yeah’. A short time later, the muffin was no more.

What does all this tell you? – Think about it.

Some days are good. Some days ain’t. Yesterday wasn’t that good. Today was. One of the best in some time. Ken from Little Sports (a brilliant bicycle shop in Fairview) had received the fabulous Marin bike he managed to get for the two An Saol fundraising cycles in the USA.

When I went into his shop some weeks ago looking for a bike I saw a Marin bike. The moment I saw it I thought “this is exactly the road bike I’m looking for”. I gave it a go. The frame was a tiny bit too small but it was an incredible experience to ride on a trial run. I asked Ken could he keep the bike for me for a couple of days which he promised he would.

When I went back to the shop I got all my courage together and told Ken why I had been looking at this bike. I asked him, would he consider to sponsor those two fundraising cycles. He thought about it a couple of days, and then he said that Pádraig had truly inspired him and Norma, his wife. He said they could do better than support the cycle – they would try to get the manufacturer, Marin, a relatively small but brilliant company just north of San Francisco, on board.

They arranged a meeting with Ricky, Marin’s rep in Ireland, and together they decided to organise a brand new bike and all the gear I would need. “It’s not all doom and gloom”, Ken said today. “There are good things happening.” And he is right. Many good things will come out of their generosity of sponsoring the bike and the gear.

Watch out for the training cycles leading up to the first fundraiser: Boston to Cape Cod in late June with a parallel cycle from the Gaeltacht in Rathcairn to the Seomra Gaeilge in TCD!

A huge bit “Thank you” to Ken and his wife Norma.

The second fabulous thing that happened today was Pádraig’s (and our) first trip back to lovely Leitrim. We hadn’t been there for three years. Pádraig’s aunt had kept it going and had done a fabulous job getting the place ready for Pádraig’s visit. We had been wondering this morning should we go or should we not – the weather didn’t look too great… It was the best decision ever to forget about the weather and chance it!

When we got there, it was the best day of the year so far: warm, sunny, and almost no wind.

It was another connection with the time prior to Pádraig’s accident that we had not made for some time. Being there again today with Pádraig was hard – but as most things that are hard, it was more than worth it. Life goes on – Leitrim has always been a central part of our life to which we just re-connected.

Like Pádraig who managed a new PB today. I want to be upbeat. I want to be positive. I want to look at the bright side of life. I want to be energetic and forward looking. At times I am. At times I ain’t. Tonight I ain’t. Because I wonder about a good coping mechanism that would allow me to cope with the most unbearable things happening not just from time to time. But almost every day.

Take today. Carers are not allowed to do what I would consider to be the most basic things in terms of care for Pádraig. We are not told but find out by default. We have been ordering the most basic items for Pádraig’s day-to-day care. They are not being delivered. I write to the HSE and care coordinators. A fistful of messages is immediately returned to me saying they will not be in the office for the next few days. Some just say they are not in the office. And the standing bed? No word.

This is beyond being funny. This is beyond being slow or disorganised. In my mind, this is negligence. There is endless time for an endless number of endless meetings. There seems to be no time to get the basics right.

Any health programme will tell you that you have to get up and move to stay healthy. You don’t have to be a doctor or a researcher to know that this is right. So what does it mean for someone who is recovering not to be moved, not to be standing up for months? The doctors, the nurses, the therapists, the managers, the people at those meetings should try that for themselves. Not for a few months, just for an hour. Lay down in bed and don’t move. And then imagine, just imagine, what it means to be lying down for months.

Can not providing desperately needed equipment and care products be justified by saying ‘that’s the system’? Or “you know the way it is?”

This is the first St. Patrick’s Day in years that Pádraig (and us) have been in Ireland.

So what do you do on St. Patrick’s Day? What do you do?

We had thought about going into town to watch the parade and then decided for various reasons not to. So we watched the parade on the telly. I remember much less sophisticated floats – in my memory half the floats were always sponsored by car dealerships – then what was on show today. What caught my attention were the incredibly large number of marching bands from the USA.

Having watched the parade we went down to Dollymount Strand. It was the first really nice, sunny, not-so-windy afternoon in a long time. It was bliss. (The man in the picture is not walking on water, he is going into the water for a swim. And he’s probably been doing it every day of his life.)

I thought today that if you are busy living your life, busy earning a living, busy getting by every day, you start blocking out the rest of the world. Voices, pictures, people from outside are difficult to hear, see, communicate with. Your world to you seems to be the only world.

Which is why we have to continuously push the boundaries of our world, challenge our view of the world, peel of the layers of familiarity, security, custom and whatever else — to see and experience that alternatives are possible, and sometimes better.