Tomorrow is the day of the 2016 Dublin City Marathon. For the first time ever it will take place on a Sunday and not the Bank Holiday Monday, making it easier for runners coming from abroad to participate. Participants will get a special commemorative Medal because of the 100th anniversary of the “rising”, the Irish Rebellion against Britain. For these reasons, the marathon sold out months ago, for the first time ever. When I eventually tried to register, all places had been sold. For the first time since I started running the year before Pádraig’s accident, I won’t be struggling to make it to the finishing line (it was never a question of time for me:).

But I have decided that my life will change. On Tuesday:) I’ll start training for the Hamburg Marathon in April. I will go to bed early. I will eat and live healthy. Starting on Tuesday. Really. I will also register for both the Hamburg and the Dublin Marathons. Really.

I also want to start planning a few trips with Pádraig. He said that he’d really like to travel. So we’ll start preparing. For the trip to Alaska. And a walk on the ‘camino’. I watched a group of Irish people walking the last 120km of the camino on Irish TV last week and I kept watching it to the bitter end (at around midnight) just to see whether the ground of that part of the camino would allow a ‘normal’ wheelchair to be pushed toward Santiago. It looked pretty promising but I’ll try finding out more.

Email from the Minister with special responsibility for Disability: he has made the An Saol Project one of his priorities for the budget being firmed up over the coming weeks. Have approached the Minister for Health as well, but haven’t heard back from him yet…

I wrote to Simon Harris, the Irish Minister for Health, today asking him for the follow-up meeting he had promised when we met some weeks ago. The health budget has been agreed, the health services plan is being drawn up, and this is the time to make sure the An Saol project gets funded. The project has also been submitted to the HSE and I had a meeting with them to discuss some operational issues – but a little attention from the government will do no harm, I’m sure.

There was another first today with Pádraig. A person working with him was working with his hands and his arms and Pádraig managed to lift not just his arms but both of his hands – including the more ‘difficult’ right hand. It is so fantastic to see him making this kind of progress, step by step, all the time, slow and small steps, but consistently improving.

What would it be like if he had consistent, appropriate support? If the sick and injured people in this country had the support they require? Wouldn’t that be a great little country to live in? Health before profit?

Isn’t it amazing when you see an old ‘thing’ that has completely lost its usefulness becoming really useful again but in a completely different way? Like – do you remember phone boxes? The ones you had to go to to make a call because you didn’t have a phone at home? Long before the age of the mobile phone? They have almost completely disappeared from out streets.

Last night, in this super-cool all open-plan collaborative Dogwatch place in super-cool CHQ in Ireland’s wonderful IFSC, I saw a couple of phone boxes being used again – only that they didn’t have any phones in them. They were a little like padded cells, given you the privacy you might be looking for when making a phone call.

I’m slowly finding back to myself and a bit of a routine following our stay in Germany first and then the epic cycle up the cost of California-a. It also means that I’m managing much better again to work with Pádraig on his exercises and the Tobii Dynavox. At the moment, we are using it once or twice a day, when, in reality, the device should be available to him all the time and he should be able to use it any time he wants to – not when I (or someone else) make it available to him. It’ll require a lot more additional work, but the day will come, I have no doubt whatsoever, that the Tobii Dynavox will be Pádraig’s voice.

Though, and of course, Pádraig is regaining his voice at the same time. Very, very slowly and not really controlled yet, but much more and better than before!

Finally, my (Spanish) friend who had told me about her friend’s daughter’s accident in Canada on the school exchange reminded me of something I had completely forgotten about. My friend had attended a lecture on the magic of books and how words reflect and describe our feelings; at one point the speaker noted that, quite remarkably, we have the words huérfano/a, viudo/a, but no specific word to refer to a parent who has lost a child – maybe because such a tragedy belongs to the unspeakable. Something that words cannot describe. Something that is never ‘supposed’ to happen. Life deals unspeakable tragedies and challenges us to get through this unspeakable pain. The amazing thing is that we can With our love and the love of others.

Tonight I went to Dogpatch and before I went I had to look up where it was. Had never heard of it. Turned out to be a super cool place in a super cool location where super cool entrepreneurs breed their latest start-ups. An open plan heaven of bright, engaged, self-convinced and self-driven people determined to shape the future of our country and the world, no less. Check it out on http://dogpatchlabs.com.

I went there to attend the first event of #HackAccessDublin or http://www.hackaccessdublin.ie – an initiative, or a project?, aimed to make Dublin more accessible to persons with mobility problems – all initiated and conceived by Janice who not too long ago lost her disabled brother.

It was all about transport: trains and DART, buses, parking. People asked really interesting questions like: can you imagine what it would be like if the names of all train and DART stations were blocked off so you couldn’t read them and you did not know where you were? If you can, then you can imagine how it feels for a blind person if the public announcement system in the train or DART doesn’t work. Or: how could sensors be used to determine which parking slots for wheelchair drivers (or driven) are available and whether the cars that park in them are the ones that are allowed to park there? And: why does Google Maps not have a wheelchair as a mode of travel, on the same wavelength as car, bicycle, or walking?

I want to tell Pádraig about this tomorrow and I’m sure he’ll be very interested. How great would it be if he could share some of his own, original ideas! One day, not too far away, he’ll be able to do just that.

When I started this blog just under three years ago, real nail biting drama was the order of the day. There were days when Pádraig’s life was on the edge and every day was an uncertainty. Tragedy was waiting just around the corner.

Contrast this with today, with yesterday, and the past weekend. It’s almost boring in comparison because the days seem to be so normal, one quite similar to the other, very few if any unexpected things are happening, while Pádraig certainly is not out of danger and still very vulnerable, the way he is today compared to where he was then cannot even be compared.

Subsequently, what I am sharing with whoever still finds the time and the interested to visit this blog is pretty ‘pedestrian’, day-to-day stuff, probably a bit boring and predictable.

Though – here is an account, a short but hard hitting one, that is far from all of this and it is one that brought back to me the reality of our life. A friend from Madrid contacted me yesterday to say that the daughter of a good friend of hers, a 15 year old girl on a school exchange in Canada, had had an accident and had suffered a very severe brain injury. Her parents had gone over to Canada to be with her and my friend was wondering whether there was any way in which I could help.

By the time I answered her today, the 15 year old girl had died. Words cannot describe such a tragedy. May she rest in peace and may her parents, family, and friends find the strength to cope.

Pádraig received a present today. Rather, it arrived for him in the post. (He didn’t get it yet:) A vinyl. Signed by Bell X1 on their latest album. (I sent an email to Atkin Promotions and Ticketmaster asking them about accompanying persons’ tickets for their next concert but didn’t get a reply, yet.) In the Euroshop in Phibsborough I bought the first Christmas present: a €2 20 picture camera. It all felt very basic, retro, authentic.

Today as well, the famous Golden Gate Bridge jumping Apple iPhone is being fixed. They are going to try and fix it because it turns out its not just a case of a broken screen but also a slightly bent casing. They recommended to put it into a solid protection casing once the screen was fixed thus preventing the bending case cracking the screen again. I’m getting this feeling that cracking iPhone screens are the expensive part of an iPhone (rather than the phone itself as I’d always thought). It’s clever business if you think about it. You sell someone an expensive piece of equipment, build in an easy to break component, expensive to replace, yet not expensive enough to warrant the purchase of a new phone compared to fixing the old. You create a whole new industry!

After bringing our Nissan to the NCT (it failed because of a broken mirror and the wipers, wipers!) I visited the young man, our good friend, with a severe acquired brain injury who just moved home after 6 years in a nursing home. You should have seen the joy on his face and that of his sister and parents who all were over the moon to have him back amongst them. I’d say it’ll take some time for all to get used to the new situation. It will be the whole family. Being together.

Pádraig had this idea of not owning anything of value. Of not taking millions of pictures with an expensive phone, but with a disposable camera. What are you more likely to look at: millions of digital pictures or a dozen printed colour chrome ones?

The idea might be catching on…

Over the weekend I realised how much I had been missing. There was a constant buzz around the house. After yesterday’s visits, three other good friends called in to see Pádraig. They got an update on his stays in Germany, his days here in the house, his progress in communication, plans. He got an update on their studies, their jobs, new and old relationships, their plans for the future, stories about sleeping on beaches and parks during those famous weeks or interrailing through Europe, tents bought for half nothing, and the incredible amount of German railway stops called ‘Ausstieg Links’.

It is so absolutely brilliant that they stick with him, that they keep visiting him, that they share their life with him as it develops. Really, really, really good. I am so waiting for the day that he’ll be able to ask them directly about their (new) jobs, their partners, their highlights in their lives, maybe crack a joke about some aspect of if, have a laugh. All that will come. There was a bit of it there over the weekend, noticeable only if you knew what to look out for, difficult to see for the eye not used to look out for the signs.

The more it becomes apparent that Pádraig is there listening and understanding what people around him are saying, how they are living their lives, the more it appears to be just natural that he has opinions about all this, thinks about all this, has something to say or ask about all this – just natural that he should be able to do what, I’m sure he wants to do: participate, be included.

Late afternoon, we paid a visit to someone in hospital who just got the news that their illness is terminal – taking it with real inner strength and incredible faith. The kind of faith that allows you not to give up, not to despair, but to accept gracefully what life holds in store for you and to make the best you can out of it. To keep the buzz going. I know this sounds like a cliché, ‘abgedroschen’ as the Germans would say (and I can’t find a good English word for it). But strength in a person seems to reveal itself when they are really tested.

It’s funny how things come to you for no reason at all, sometimes.

For example: we are setting up this super-dooper wonderful does-it-all Tobii Dynavox communication computer for Pádraig. One thing, amongst many, it can do for him is to allow him to click his way through a menu we have set up for him, using a simple switch (well, it’s not that ‘simple’).

So he can let us know, amongst other things, what he wants to wear (haven’t used that one very much yet) or what he wants to eat or drink (that’s the one we mostly work on at the moment). This is so good and gives him great means to express himself and let us know his preferences.

But, today I noticed that one BIG aspect was missing from this communication stuff we have set up so far. Questions. To the people around him. There are no questions. Like: How are you? What have you been doing? How are you feeling? Are you sad/happy/tired/ok/energised/…? Can you spend more/less time with me? Where would you like to go today? How was your day? – As if all what he wanted to communicate was about himself. As if he was not interested in the life of the people around him. As if he didn’t care. As if all he wanted to let us know was that he preferred banana milk right now to tea. Kinda.

I thought about this because two of Pádraig’s really good friends visited today. One after the other:) And both asked loads of questions. They did not tell me what they wanted to eat or drink – or anything like that. And I thought: this is the way you talk with people. This is how conversations work. You show interest. You ask them about their day, their life, their interests. And when they ask you, you tell them.

Communication. Life itself. It’s a 2-way thing.

PS: Heard today that a big Irish American Magazine in San Francisco will publish a picture and an article written by our friend in Napa about our fundraising cycle, probably next week. Brilliant news! Next year, I’m sure they’ll help us to promote our US event ahead of it happening!

What have Suzane Vega, Bob Dylan, the Beatles, and Rod Steward have in common? – They all recorded a song, a different song, about ‘Maggie (Mae)’. Even the Simpsons have a ‘Maggie’. Have been trying to find out what the name means and found different views on what it stands for. Maybe it’s just a very popular name? – Any ideas?

You probably think ‘this guys seems to have plenty of time looking for explanations for the most unimportant things!’. Truth is, I don’t really. But from time to time you just have to do whatever comes to your mind, whether it’s ‘useful’ or not. Right?

I’m listening at the John Creedon Show on RTE Radio 1 who is playing really great music. Makes you wonder why on earth anyone would ever watch the telly – if you can listen to really great music. Pádraig is beside me in his bed, listening as well, half asleep, very much like myself.

It feels good and close and the way it probably should be. Kind of a quiet evening in. Wonder what you are doing tonight?

Spending a few days alone with Pádraig. Catching up. It feels like this is what I should be doing. Spending time with him.

During a break, I went through the recently published Irish 2017 Budget but could not find any reference to any budget allocated to neurological rehabilitation. I had heard that money had been allocated. So either I did not find the relevant reference or moneys were not allocated. Maybe I’m looking at the wrong document? I’ll try to find out…

What definitely has not happened is any action by or reply to our questions from the Attorney General of Massachusetts Mary Healy. I wrote to her office, met her officials in June of this year, and was promised an investigation. Four months have passed – and no reply. I know that some of you wrote to her too in 2015, as did I, and never ever received a reply. Strange to think that something like this would be possible… I will follow up with her office as well.

Róisín Shortall, T.D., recently asked a parliamentary question in relation to the An Saol Pilot Project and An Saol’s proposal presented to the Minister of Health and the HSE. She did get a reply. – Fair play to Róisín for having followed up on the discussions I had with her, keeping the Department on their toes. – The HSE apparently have not yet responded.

 

 
 *  To ask the Minister for Health his views on a proposal to establish a pilot programme to provide day-care and therapeutic supports to people with acquired brain injuries (Details supplied) and if he will consider allocating funding for this proposal in the 2017 service plan.

Róisín Shortall T.D.

Details Supplied: The proposal presented to his Department by the An Saol project,

  
REPLY.
The Minister for Health, along with Department and Health Service Executive (HSE) officials, recently met with representatives of An Saol Project, at which they outlined their ideas for the project.  I understand that the HSE will consider the proposal in the context of the ongoing estimates / budgetary process and the resources made available for the National Service Plan for 2017.

I have referred the Deputy’s question to the HSE for a more detailed reply on the matter.

---

And here is part of an email from a friend with another reply – this time from Deputy Richard Boyd Barrett.

I am just forwarding you an email I got from Richard Boyd Barrett about a question he asked in the Dail re Neuro Rehabilitation Services. (…) I’m sure you probably have heard the reply (given you have met Finian McGrath).. (…) I feel that you have moved rehabilitation for people with #sABI out of the wings and on to centre stage.. and this is a positive.

Please find below the PQ and reply which I put forward on your behalf. As you will see we are still awaiting a reply from the HSE which I will forward to you as soon as I receive it. Best Regards Richard Boyd Barrett

QUESTION NO: 211 DÁIL QUESTION addressed to the Minister of State at the Department of Health (Finian McGrath T.D.) by Deputy Richard Boyd Barrett for WRITTEN ANSWER on 06/10/2016 *

To ask the Minister for Health if his attention has been drawn to the call for immediate action to direct a comprehensive revision of the proposed Plan for Neuro-rehabilitation Services by his Department and the Health Services Executive, which is required to ensure adequate funding and co-ordination of these services; and if he will make a statement on the matter. Richard Boyd Barrett T.D.

REPLY. The Government is committed to providing services and supports for people with disabilities which will empower them to live independent lives, provide greater independence in accessing the services they choose and enhance their ability to tailor the supports required to meet their needs and plan their lives. This commitment is outlined in the Programme for Partnership Government, which is guided by two principles: equality of opportunity and improving the quality of life for people with disabilities. The Programme for Partnership Government places a particular focus on a number of key programmes and strategies, including publishing a plan for advancing Neuro-rehabilitation services in the community. Currently a steering group led by the Health Service Executive Social Care Division has drafted an implementation framework for the National Policy & Strategy for Neuro-rehabilitation Services, which will guide and oversee the development of Neuro-rehabilitation structures and services at national and local level. Alongside these developments, the Government announced a major development of the National Rehabilitation Hospital which will deliver a purpose built hospital on the site with 120 beds and include support therapies, paediatric and acquired brain injury wards, a hydrotherapy unity and a sports hall. As the Deputy’s question relates to service matters, I have arranged for the question to be referred to the HSE for direct reply to the Deputy.’

That Richard Boyd Barrett replied is in contrast with Attorney General of Massachusetts. I wrote to Maura Healey on 28/6/15 and never heard anything back.