This morning, Cian and I went to the Office of the Attorney General where we met the Chief of the Victim Witness Services Division and the Deputy Chief of the Policy & Government Division. The Deputy Attorney General and the Chief of the Criminal Bureau sent their apologies as they were out of town.

We gave a brief account of the accident, our meeting with the Brewster Police Department and their investigation into the accident, and summarised the content of the letters we had written last year and, again, this year.

We were told that the letter had only reached the desk of the Deputy Attorney General a few days ago. We were given an apology for the unacceptable delay in dealing with our letters. The good news is that the letter will now be dealt with directly by the chief of the Criminal Division. When asked when we could expect a decision on whether a thorough review of the police investigation would be conducted, we were told that this could take approximately one month. We were also told to expect a phone call from the Criminal Division.

When I asked whether a written submission would usually be acknowledged in writing and whether a decision on a written request would be communicated in writing, we were told that this would usually happen via a telephone call.

So what is the net outcome of the meeting?

The fact that the meeting took place by itself was good as it put the issue back on the agenda (if it ever had been on it, that is). The representatives we met and talked to, unfortunately are not the ones who would review the investigation, nor could they give us any opinion on how they felt it was conducted. While their apologies were very much appreciated and certainly very sincere, we will have to wait and see whether anything concrete will come out of it. – I am still so shocked about the way Pádraig’s accident was investigated. Something like this cannot allowed to happen again. This was, after all, and as he acknowledged, the worst accident that the Chief of Police had had to deal with in his career. It merited more attention.

Haven’t got any news from the Áras and Pádraig’s visit there yet – BUT a phone call from the Taoiseach’s office with an apology from the Taoiseach as he could not attend last Saturday’s launch of the An Saol Project. I asked whether I could see the Taoiseach and explain to him what An Saol is all about, at a day and time of his convenience. – I’m now on the waiting list for a meeting:)

Still extremely tired – but will see a couple of Boston-based friends this evening in Harvard Square.

If you were interested – here is the full letter I hope to discuss with the Office of the Attorney General in an hour’s time.

160613 Letter AG and GOV f2

Just click on the link or the image above to read to full letter we wrote on 13 June 2016, together with previous letters and a list of concerns we have in relation to the investigation into the accident by Brewster Police Department.

Support the Great American Cycle I

From Boston to Brewster via Hyannis
26-27 June 2016
Arriving in Brewster (near Bramble Inn) June 27, 10am
www.ansaol.ie/donate

On the plane to Boston. Still can’t believe I made it. The panic all day yesterday and today. I’m probably too tired to think of all the stuff I didn’t manage to do. Looking on the bright side of things: I managed to get the bike geared up and packed into a box (with the help of the great people and supporters at Little Sport), I managed to prepare and, this morning, deliver a speech at the Neurological Alliance Ireland launch of their campaign “We need our heads examined”, and I got my back packed to arrive on time at the airport!

The launch of the NAI campaign was great with some really remarkable people. Alexis Donnelly who had had joined us on Saturday for the launch of the An Saol Project also spoke – and I’m getting this feeling that we are very much on the same wavelength. For the first time in my life I ‘drove’ an electric wheelchair through town – not my own, but Alexis’ – from Leinster House to the Mansion House. I really felt for Alexis and hope it wasn’t too bad for him.

Sitting on the plane, drinking Coke to keep me going until we’ll land in Boston. I’m just too wound up to sleep.

And look at this plane! Is this coincidence?

What, for a time, looked like a pretty low-key affair, is now beginning to turn into a possibly great awareness and fundraising cycle from Boston to Brewster via Hyannis, with Cian and Neil, two of Pádraig’s friends. It all just came together at the last minute.

I’ll now have a meeting with the Attorney General’s office tomorrow morning (mentioned that earlier, I vaguely remember:) and on Monday, when we’ll arrive in Brewster, we’ll be met by a Cape Cod journalist and photographer. Even better – a writer from the Globe is also planning to be there when we’ll arrive at 10am on June 27 in Brewster, near the Bramble Inn, where Pádraig was hit by the van.

In parallel, there will be a great summer fest in the PAV in TCD with great music and a screen showing what will, most likely, be Ireland’s last match in the Euros.

Pádraig was doing very well this morning using, for the first time, his new communication device and software, all being set up by his therapist who could not be more helpful and connected with Pádraig. Imagine, this device can become Pádraig’s voice (until he’ll have learned to use his voice again) and his tool for communication.

I’m feeling less scared of the whole enterprise than I did even a few days ago. It’ll all work out. Someone close to me said “think of Pádraig when you’ll be cycling. He’ll keep you going.” That’s what I’ll do. And I know I’m not the first one who Pádraig has inspired to do things they never thought they were capable of.

Finally, here is something you can help us with: tweet, email, Facebook about the Great American Cycle (Part I) and the Big Party in the PAV. Above all, tell them about the new www.ansaol.ie and the video on the landing page explaining what we are fundraising for. Go to www.ansaol.ie/donate !

Last night, when I turned Pádraig, I checked my email.

There was a message from the Deputy Attorney General of Massachusetts telling me that she was getting a team together who will meet me tomorrow in Boston. Many of you wrote letters and messages last year to the Attorney General’s Office, as we did, asking them to review the Brewster Police Department’s investigation into Pádraig’s accident. Most of you, as we, did not get an appropriate response – I received two phone calls from her Civil Rights Division, but no written follow-up. Earlier this month, I sent a follow-up letter to the Attorney General, the Governor, and the consulates, embassies and Departments of Foreign Affairs of Ireland and Germany. – Maybe something is happening now.

Maybe then, when, God forbid, another young J1 foreign student cycling on the Cape gets injured on his cycle by a local driver of car – at least there will be a thorough, un-biased, and independent traffic accident investigation involving more than just the local police investigating. Because they will know that they won’t get away with it.

This morning, I will pack the rest of my stuff. I will give a brief talk at the launch of the Neurological Alliance Ireland’s brilliant campaign for neuro-rehabilitation, “We need our heads examined”, and will head up to the airport with a big box packed yesterday by my sponsors Little Sport, the best bike shop north of the Liffey, containing the fabulous Marin Bike, sponsored by the manufacturer. A big Thank You to both Little Sport in Fairview and Marin in California!

A bit in a panic tonight, trying to get ready for my ten minutes of fame at the launch of the Neurological Alliance Ireland (NAI) campaign, “We need our heads examined”, in the Mansion House in the morning.

Then out to the airport and off to Boston.

I am so not ready – but it’ll all work out.

Had two radio interviews over the past two days, so the An Saol campaign and our Great American Cycle is getting a bit of publicity. There’ll be a bit of coverage of the cycle on Sunday/Monday as well.

Pádraig got his Eye Gazer and Communicator soft- and hardware calibrated today for the two week trial – and what we all thought would be terribly complex (calibrating the technology with Pádraig’s eyes), he managed to do to perfection and in no time. Brilliant first step!

Here is the information circulated to the press about the cycle:

An Saol Foundation for Severe Acquired Brain Injury

Press Statement for Immediate Release

Cycle for Pádraig Schaler from Boston to Cape Cod

June 26-27, 2016

Trio undertake US cycle to raise funds for An Saol neuro-rehabilitation project

Salute to the bravery of Pádraig Schaler and all other severe acquired brain injury survivors

On Sunday, June 26, 2016, a week after An Saol’s successful launch of its neuro rehabilitation initiative (http://www.thejournal.ie/brain-injury-ireland-padraig-schaler-2827573-Jun2016/), Reinhard Schaler (57) and two of his son’s friends, Cian Waters and Neil McEnaney, undertake a two-day bike ride from Boston to Brewster on Cape Cod.

Their journey ends in Brewster on Monday, June 27 at 10h00, the exact moment Padraig Schaler, then aged 23, was hit by a truck and left with a catastrophic brain injury.

The three are raising money for An Saol’s €1.5m rehabilitation service for survivors of such injuries (see http://www.ansaol.ie).

Reinhard Schaler, Pádraig’s father, said: “This will be the most difficult cycle of my life as I recall my son’s dreadful accident and its awful consequences. But what will keep the pedals turning is my awareness of Padraig’s indomitable determination to survive and the knowledge that I and Cian and Neil are raising money for a facility that will respect and fulfil his needs and those of others in his situation.”

Cian Waters says: “Life can change in a second. Nobody knows that better than my friend, champion swimmer and Gaeilgeoir Pádraig Schaler (26) who suffered a catastrophic brain injury when a truck tried to overtake him with oncoming traffic on a narrow road in Brewster, Cape Cod, on June 27, 2013. Doctors told his family that life would be intolerable for him, even if he survived. He has survived and he deserves better treatment than what he is currently receiving from the Irish State. I’m cycling to change things for him and other sABI survivors.”

Neil McEnaney says: “Pádraig has defied all predictions. Keeping to his well-known single-mindedness and the focus of a true athlete, he fought the fight of his life. He survived not just the accident but also several secondary complications that could have killed him a number of times. Pádraig is not the only young man who is being denied the neuro-rehabilitation he requires. Many with injuries such as his are being maintained in nursing homes, receiving what can only be called ‘end of life treatment’.”

Reinhard Schaler adds: “Parents of one sABI survivor have been told that all their son required was nutrition, hydration, and medication. Ireland is one of only two EU countries that have not ratified the UN Convention of the Rights of Persons with Disabilities. This is not good enough and should be addressed immediately. We’re calling on Junior Disability Minister Finian McGrath and Health Minister Simon Harris to match our €1.5m funding so that our sons and daughters, parents and friends with sABI can finally have the dignity they are entitled to under the UN Convention.”

Donations to support the An Saol Project can be made on: www.gofundme.com/AnSaolProject

Interviews available on request

Ends

Media Inquiries

Reinhard Schaler: email Reinhard.Schaler@ansaol.ie; mobile: +353 (0) 87-6736414

Log on to www.ansaol.ie ; Follow us on Twitter: @an_saol #sABI; Like us on Facebook: An Saol

About Pádraig

Pádraig Schaler had just finished his studies at Trinity College Dublin and had planned to spend the summer on Cape Code, working on a J1 visa like thousands of other young Irish students when he had his accident. He can see, hear and understand but, for the moment, remains non-verbal, making use of a special switch to communicate. He also has not yet regained control of his body and requires 24-hour care.

About An Saol Foundation

We are families, friends and supporters of persons affected by a severe acquired brain injury (sABI). We have established the An Saol Foundation as a non-profit organisation, registered in Ireland. We will offer advice and support to families and friends affected by sABI. The An Saol Foundation pledges to afford every opportunity to people with severe Acquired Brain Injury (sABI) to live their life with dignity and respect, to continue to improve, to regain as much independence and self-determination as possible, and for their injuries to heal, supported by adequate therapies.

References for Journalists

http://www.thejournal.ie/brain-injury-ireland-padraig-schaler-2827573-Jun2016/

www.ansaol.ie

http://ansaol.ie/media/

https://vimeo.com/171203441

https://vimeo.com/170218301/c932a99f5d

 

How long is the longest day of the year?

We had waited for months for this appointment in the NRH which, we had been told when Pádraig was discharged, would in some way continue with the therapies and neuro-rehabilitation Pádraig needed when he was at home.

So we went to the NRH having great expectations. Pádraig had an appointment with a speech and language therapist (SLT) as well as with an occupational therapist (OT). We were wondering how they would organise his outpatient treatment, how often would they see him, what their goals would be for Pádraig? Better head control, upper body stability, sitting, posture, trying out different textures in food, mouth/lips/swallowing exercises, learning how to use his voice more often and more regularly and purposefully – we were sure the specialists would come up with a prioritised list of therapies and goals out of the long list of needs Pádraig has.

When we went their yesterday for the appointment, full of hope, we rapidly realised that this was a check up on Pádraig, on us, on how we were all doing. There were a few lists to be filled in, some questions to be answered, with therapists who didn’t know anything about Pádraig apart from what they were reading in the files they had with them. So there we were, telling them how we were all doing, how Pádraig needed more therapies, and they telling us that they were surprised to see Pádraig in such a good shape. That other persons in his situation could have spasms so strong that they were not able to stretch out their arms any longer, meaning that terrible wounds would develop in their arm pits. In this case, they would use splints – something you would use to immobilise a broken bone… My question, whether they felt this was right, I don’t think was even understood.

Today, Pádraig had his monthly physio visit. Yes, once a month he has a visit by a physio. Again, the question whether that was right, whether that was sufficient, I don’t think was even understood.

Today, and here is the good news, the Communicator 5 and the Tobii eye tracking software and device arrived for a two week trial. It is truly wonderful to see that if you want you can do things. If you are determined, you can make things happen. Even if you work within a system that is difficult to navigate. Can you imagine how Pádraig will benefit from a device that will help him with communication? He really wants to communicate, take part in discussions, let us know how he feels and what he would like to do, how he would like to dress, what he would like to eat, and whether he is thirsty or not and millions of things more. There is a good chance that he will get the device, not just for three months, like the MOTOMed, but for his exclusive use. There are, even on terribly difficult roads, people who are so wonderful that they make you forget your troubles.

We’re getting ready to go to Boston and cycle on to the Cape. Today, we heard that there will be a journalist from a Cape Cod news outlet there on Monday in Brewster, together with a photographer. And, with a bit of luck, a journalist from a big big Boston newspaper.

And, finally, check out http://www.GoFundMe.com/AnSaolPRoject – two very generous contributions of 50k and 5k were added today and there are dozens of small and large contributions by people, some friends, some from people we never heard of. We will get there. No doubt. We will raise this funding. Just keep spreading the word!

Something extraordinary is happening. It seems that something somewhere has sparked off interest that looks like as if it was converging into a movement. 3538 views last night, 2399 so far today of a blog I started to write in desperation, in a situation of absolute helplessness. Add to this hundreds of tweets, and then emails as well as phone calls – and you can see the beginning of a movement. Similar to The Alice’s Restaurant Anti-Massacree Movement that Arlo Guthrie sang about in his song made famous in Woodstock.

“Or you may be in a similar situation, and if you’re in a situation like
That, there’s only one thing you can do:

Walk into the shrink wherever you are, just walk in, say, “Shrink, . . . you
Can get anything you want at Alice’s Restaurant”, and walk out.

You know, if one person, just one person, does it, they may think he’s
Really sick and they won’t take him.

And if two people do it, in harmony, they may think they’re both faggots and
They won’t take either of them.

And if three people do it! Can you imagine three people walkin’ in, singin’
A bar of “Alice’s Restaurant” and walkin’ out? They may think it’s an
Organization!

And can you imagine fifty people a day? I said FIFTY people a day . . .
Walkin’ in, singin’ a bar of “Alice’s Restaurant” and walkin’ out? Friends,
They may think it’s a MOVEMENT, and that’s what it is: THE ALICE’S
RESTAURANT ANTI-MASSACREE MOVEMENT! . . . and all you gotta do to join is to
Sing it the next time it comes around on the guitar.

With feelin’.

Over the weekend and today in some of the messages, an important question came up and that was: what does Pádraig think about all of this? Does he want to live what doctors have called in conversations with us an ‘intolerable live’? Would he rather be dead? Why make him go through all of this pain when there is no hope of improvement? Some people saying ‘if I was in that situation I would want to terminate my life’.

It is a tricky question. For one, because it is tricky to be able to understand what Pádraig wants. Someone once said that the problem is not, as we always assume, to get the injured to understand us, but for us to understand the injured, often non-verbal. You need time and patience and determination to build up confidence, trust, understanding to communicate.

Pádraig has chosen to live. And it is our duty to provide him with whatever help he requires.

The headline of an article in The Journal tonight.

I can’t add much to what The Journal writes about Pádraig and I am feeling almost more exhausted as I did yesterday, if that was possible.

So tonight, I’ll take it easy and leave the writing to TheJournal.ie…

Thank you for making the An Saol Day possible. Thank you for joining us for the film screening in the morning and the launch of he An Saol Day in the afternoon. Thank you to all who made this day possible. Our guests from Germany and the Irish voluntary sector, as well as several politicians. Wheelchair users, people with neurological conditions. Thank you for Cormac to moderate, for my family to support this event. The film and the following discussion were absolutely mind-blowing, I thought. The room for the launch was so packed people had to stand in the back. There were poets, politician, singers, dancers, survivors of severe brain injury. One who’s had had his accident 26 years ago and had never seen by a neurologist. People attended who moved the romantic weekend with their wife of 25 year to attend. Thank you also to David and Sharon who built the ansaol.ie site together with several really good videos, one just published today…

 

Here are some pictures from Screen 3 ini the Lighthouse Cinema.

Here are pictures from the launch of An Saol…

 

 

 

(I wrote this last night but first posted it to the wrong place…)

Last minute preparations. Collecting our German speakers and supporters from the airport. A stroll and dinner through town. Flights delayed. Everybody making a huge effort to be there tomorrow, to make sure that our voices will be heard. Shouting from the rooftops: enough is enough, no more, no more, no more being considered to be on death row, sent to the nursing homes where people who have lived their lives are waiting for it to end. No more waiting, no more hoping that someone, someone must surely see that here are our young sons and daughters and partners and brothers and sisters with a life ahead of them, a life, a life, a life worth living, a life worth fighting for, not the life they had before, not the life they had planned or imagined, sure who would ever imagine having such a catastrophic accident and injury, but a life nonetheless, a life with good days and bad days, but a life together, a life with food, drink, wind in your hair and rain on your skin, with good smells and bad smells, with really good music, and exciting adventures.Tomorrow will be the first day of the An Saol Project.

It will change Pádraig’s life and that of others like him. It has to. There is no option, no plan B.
See you tomorrow!