Unfinished Symphony

Many years ago, whilst travelling though Northern India, I met a man who helped me partly understand one of the great human mysteries that had haunted me since I was a teenager.

I have always struggled with the concept of human suffering and the need for it. If I am honest I have been unable to reconcile it with the existence of a loving God. It would seem that the universe we live in is essentially a cruel place where suffering is built in, especially human suffering given that we are ‘conscious’ of it.

I cannot even remember the man’s name at this stage but I will always remember the wonderful metaphor he gave me of how he saw suffering reconciled with love.

Imagine suffering represented as the digging of a deep hole. It’s a dark place, it is underground and it is effort. The further you dig the harder it is to get back to the light. It is easy to get lost in the darkness.

However, right next to the hole is a growing mound of loose soil where seeds and water and heat have easier access. With this soil you can build and shape things, you can climb the mound to get a better view and you can get closer to the light in the sky. You can always fill the hole in again only this time the soil may be more fertile and more things can grow…

When there is suffering, the potential to heal is also created.

When there is terrible suffering, a very deep rent is created that may take a long time to heal but if you look closely you can see tiny seeds of hope and healing around the rent. In time these seeds, if nurtured, will heal the suffering and something new will be born.

Creative energy when used to heal can be thought of as love…

****

Gustav Mahler is probably my favourite composer. His music is extremely intense and often violent in expression whilst also being sublimely gentle at times and is music you cannot just listen to in a background way. It demands your attention and is utterly uncompromising in these demands. Mahler was an extremely complex individual and part of my fascination with him is how these complexities manifested themselves in his music.

In 1906, over about 4 weeks, in what he called ‘a white heat of inspiration’, he composed the 8^th symphony. It is considered one of the greatest ever feats of human creativity requiring over 1000 performers. It is divided into two distinct parts. The first part is based around the ancient Latin prayer, ‘Veni, Creator Spiritus’ and essentially calls on the ‘creative’ spirit to visit our souls. The second part is centred on the redemption scene in Goethe’s ‘Faust’. (The Faust legend is, to many, the archetypal myth representing the human desire to ‘explore’ the universe while disregarding any consequences. Faust sells his soul to the Devil so that he can experience all a human being can experience. In the end however he is unknowingly redeemed by love).

The essential message in the symphony is that human creativity in its highest form is indistinguishable from love. The symphony itself is an act of expression that beautifully reflects that.

Between 1903 and 1904 Gustav Mahler wrote the infamous 6^th symphony. It later came to be known as the tragic symphony prompted by the comments that Mahler himself made about the music before it was performed. He claimed the music was inspired by the premonition of three hammer blows of fate which were to befall him ‘the last of which fells the hero as a tree is felled’.

In the final movement he orchestrated three colossal ‘hammer blows’ to represent his premonition.

In the year following its premiere, his daughter died, he lost his job as the Vienna Philharmonic conductor and he was diagnosed with a fatal heart disease.

Mahler later revised the symphony and removed the third hammer blow to superstitiously avoid facing ‘fate’.

The symphony was performed for the rest of his life with the third hammer blow removed.

****

A few days before August 7^th 2009 I received a text on my mobile phone which pretty much said the following:

On August 7^th 2009 at 34 minutes and 56 seconds past 12 the time and date will read:

12.34.56 07/08/09

123456789

This will not happen again for another 1000 years.

****

About a week prior to August 7^th I rang Stuart Mangan. We had a great conversation where we discussed various aspects of the work we had been doing together. He was in great form and he mentioned to me his interest in creating an interactive pressure mat that would help him manage the ongoing problem of bedsores.

After the conversation I spoke with a good friend who has great knowledge and expertise in the rehabilitation field and he recommended a few links and companies to me.

I sent the links to Stuart hoping he would follow up to see if they were of interest.

Two days later he sent me a fantastic reply which was full of enthusiasm and energy. He also attached a really well crafted note on some other inventions he had thought up which he believed would improve his quality of life. What was incredible about the note was the attention to detail in terms of formatting, underlining and bolding titles etc. He had done all this under voice control and the note was a fantastic example of how far he had come with the voice recognition software.

I sent him a reply encouraging him to write more because what he had written in the note was really inspiring. One of the projects we were working on was for Stuart to start his own blog with his reflections and insights on life…..

It was not to be.

****

My son Osian, was over in Ireland around the first week in August. He comes over around this time every year and it’s probably our most important time together just simply because it’s much longer than a typical visit to Wales. It’s amazing how much your attitude to children changes as you get older. I never thought I would be a Dad when I was younger and now that I am, I cannot imagine anything more important or fulfilling.

On August 7^th, we decided we would drive to Dingle to spend some time in a good friend’s holiday home there. Each year we travel down to Dingle in the vain hope that we might get to travel to the Skelligs. It’s a place neither of us has been to and I wanted to go to an extraordinary place together so we could have a lifelong shared memory as father and son. Unfortunately we had failed on every previous occasion due to poor weather. It looked like this trip was going to be no different – the rain was bucketing down on the way to Dingle.

I was telling Osian about the extraordinary experience I had had in Kenya this year with Camara. We discussed the possibility that he might come out to Africa with me some summer. He said he would love to.

I then took a phone call from a colleague in Camara who told me that it was urgent that I speak with her. I pulled the car over to the side of the road my heart beating wildly. When you send over 80 people to Africa as volunteers every year there is always a chance something very serious could happen. The worst thing possible had happened. Robert Stringer, a 26 year old Camara volunteer, had been killed in Zanzibar just off the east coast of Tanzania.

It is hard to describe how shocked and distraught I was when I heard this news. Your first thoughts go out to the family of the victim as you wonder how they are best supported at a time like this. As the tragic news sinks in, a deep sadness takes over. You suddenly find it extremely difficult to place the event in the context of any kind of spiritual belief. You think of the generosity of spirit that drove the person to travel out to the developing world to give their time and expertise to people there. You think of the effort it took to raise the resources to do that in these challenging times. You think of the young Camara team supporting that decision and effort. You think of the worrying family during all this preparation only to have their worst fears realised. You think this person is somebody’s son, somebody’s brother, somebody’s friend.

After taking the call I looked at Osian wondering how I disguise my emotions. The rain was pouring down on the car and as it happened we had a fabulous view to our left. I stared out at the beautiful view reflecting on what I had heard. The juxtaposition of the beautiful side of nature outside the window and the awful side of human nature that had taken Roberts life prematurely was stark.

We were alone and since we do not get to spend much quality time together my first instinct was to not tell him anything and just battle on given the positive conversation about Camara we had just been having. Is it right to share such terrible news with a 13 year old? He looked back at me and he could see that I was upset.

‘You just got bad news didn’t you’ he asked me.

I nodded.

‘You need to grieve Dad’

I looked at him astonished. Where on earth at his age had he learned wisdom like that? I felt immensely proud at that moment that he was able to display such wonderful empathy.

So I told him what had happened.

When he had heard that a volunteer had died whilst in Africa he asked me a very challenging question:

‘Do you think that will put people off going next year?’

What he seemed to be basically saying was that his initial enthusiasm for travelling with me to Africa had diminished. I was struck by how subtle and sensitively put the question was.

I only realised much later that he was actually asking me not to go to Africa next year because he was worried about my safety but that’s another story in the brewing….

In any case, the question made me think. Should we stop sending volunteers to Africa because of what has just happened or should we carry on regardless. Then the ultimate question came to me like a hammer blow….

Was Camara worth it?

****

We arrived in Dingle and I got another phone call. It was from Stuart Mangans brother.

Stuart had passed away earlier that day.

I was utterly shocked. Two days previous we had had that marvellous exchange around his inventions. 12 hours later apparently, Stuart fell into a coma from an advanced chest infection. He died the following day.

I had intended to travel to see Stuart the following Friday (the 14^th August) to show him the pictures from the Camara trip. He had been looking forward to seeing them.

I put the phone down and looked across at Osian.

I told him what I had heard wondering how many tragic stories a 13 year old could take.

‘Its strange that you have got so much bad news in one day’ he mused.

And with that word a ‘strange’ feeling of peace came over me. I cannot describe it any better than that. I suddenly started thinking of the last note that Stuart had written to me. The note that pretty much said that he was not giving up despite the circumstances. That he was going to push on and take on the challenges in his life with passion and intelligence and creativity. In a ‘strange’ kind of way that is what I needed to hear.

Camara had to continue…

****

Two days later Osian and I along with a good friend were on our way to the Skelligs. Despite the awful weather heading down to Dingle, remarkably it had cleared up rapidly and the trip was on.

The Skelligs are about 12km off the south west Kerry coast. Even on a ‘calm’ day the boat ride out is quite an ordeal. The two islands rise majestically out of the water on the approach to them. The smaller Skellig houses around 50,000 gannets (making it the second largest gannet colony in the world – the largest is in Scotland somewhere). The larger island, Skellig Michael houses an extremely well preserved 6^th century monastery near the summit (over 220meters above sea level).

The boats need to dock in a precarious little inlet with huge steep slippery rocks as sides. When we got off the boat Osian looked around in awe.

‘Gosh, I feel like I am on the filmset of King Kong when they arrive on Skull Island for the first time’

I remembered feeling exactly the same way the first time I saw that film. That incredible sense of anticipation of what was behind the wall on the island. Osians sense of anticipation made me feel that way albeit briefly.

It made me long to have that childish sense of wonder and awe again.

To get to see the monastery you need to climb about 500 steep steps that wind their way up the rock. When you get to the top the views are simply breathtaking.

Before you enter the monastery area you pass through the gardens that were cultivated by the monks over the hundreds of years that the monastery was active (it officially closed in the 13^th century). The 12 monks or so at a time used seaweed, egg shells etc to create terraces of cultivatable land on the side of the rock. There is no source of fresh water on the island so they had to create water catchment pools and aqueduct channels for their water supply.

The monastery was established in this wildest of places because it was as far west as one could go in terms of the known world at the time. This meant that the occupants were nearer God by being so far from ‘normal’ humanity. It was an extraordinary choice for people to make. An amazing example of how the human spirit can prevail in the most arduous of circumstances.

I was again reminded of Stuart and how he had chosen to endure despite his circumstances.

Just after the garden you go through a little stone tunnel to enter the monastery itself. Osian went first and I followed. Being smaller than me (only slightly these days!) he navigated the little tunnel easily. It took me a little longer. I found him staring at the monastery on the other side. He looked at me.

‘This is a holy place Dad’

What does it take for a 13 year old to want to utter these words?

I can only think that with that highly tuned sense of wonder he could empathise somehow with the extraordinary decision for the monks to ‘live on the edge of the known world’ so they could be closer to God. Perhaps this is an instinct all children have but that gets lost as we get older.

****

Osian went home the week after we visited the Skelligs. The two of us were still talking about the incredible experience that we had had there when I dropped him off in Wales.

The day he left I began to have repetitive nightmares about what had happened to Robert in Zanzibar. Without the focus of looking after Osian (or perhaps his protection I am still not sure) the trauma of what I felt on hearing about Robert’s death began to catch up with me.

The day I was dropping him back to Wales was the day when a removal service was held for Stuart in Mount Merrion. I was unaware of it at the time but Stuarts Dad read out the last email exchange Stuart and I had had together at the service. He did this to demonstrate how positive Stuart was 12 hours before he slipped into a coma and two days before he died.

It turns out that one of my colleagues in UCD was at the memorial service. The following day he flew out to the States and rang me from there to tell me about the service and the reading of the email exchange between Stuart and I. It was incredibly consoling to me to hear how inspired my colleague was by this.

Once again it felt like a message from Stuart not to give up.

****

Friday came, the day I was supposed to visit Stuart, and I headed down to Cork for his funeral. I ended up travelling down with a group of women that knew Stuart and his family in different ways. We had good fun on the way down and it was a lovely way of journeying to his final resting place.

One of my strongest memories of the day was some quotes that were printed on the missal for the mass. One of the quotes was from John O Donoghue (a good friend of John Moriarty):

Let the silent tears flow

And when your eyes clear

Perhaps you will glimpse

How your eternal child

Has become your unseen angel

Who parents your heart

And persuades the moon

To send new gifts ashore.

And another from the Book of Judith in the Old Testament:

Your deed of hope will never be forgotten

By those who tell of the might of God

You are the highest honour of our race (Judith 13: 18-20)

When his body was finally laid to rest a dove was released to symbolise the soul flight. I watched the dove for awhile. It flew to a nearby tree and stayed watching everyone from a high perch. John Moriarty had once said to me that a soul can linger on in the physical world for awhile if need be.

For me anyway, I was glad of his presence.

****

I got back from Cork late after the funeral. I still intended to travel to London. Some friends of mine were getting married there and one of the reasons I had arranged to travel to London that weekend was to attend the wedding whilst getting more time to spend with Stuart.

I woke up early the following morning and seriously considered not travelling. I had had very little sleep and it is quite a long trip to the airport from where I live.

In addition Robert Stringers body was being repatriated from Zanzibar and I was concerned that should anything go wrong I would be better off in Ireland. His removal was planned for the Monday after the weekend with the funeral on Tuesday morning.

In the end I decided to travel. I owed it to my friends to be present at their wedding. One of them was Indian and we had met through the turbulent time in Media Lab Europe. In fact, she reckoned that she had met her future husband through that connection to me. It was important that I was there.

With all that had happened over the previous few months I had never actually checked where in London the wedding was. London is a big place but I was amazed to find that the wedding was to be held in a place called the Amadeus centre almost next door to Stuarts flat!

In fact, the wedding was not far from Garway road.

I got off the plane in London with the soul intention of finding a place to stay and sleeping for a few hours before the wedding started (which was in the afternoon).

Remarkably, whilst I was getting off the train in Paddington I met my wonderful youngest brother who was also travelling to the wedding. We had neglected to tell one another of this fact and yet we were on the same plane and train without seeing one another.

I then got to spend some serious quality time with him which is rare these days given our respective responsibilities.

Phil is somebody I deeply care about and so this little gift in its own right was something very precious indeed.

The wedding was a beautiful event full of positive vibrant moments that felt like a little oasis in all the tragedy that had happened. It sat between the two funerals as a simple but singular reminder that the cycle of life goes on.

****

I arrived back into Dublin (as it happens on exactly the same flight that Phil was on) on the Sunday evening. Robert’s body had arrived back from Zanzibar the previous day and preparations were being made for the removal the following evening.

It turned out that Robert’s family lived in Kilcoole very close to where I live in Greystones.

The following evening I arrived into the Church in Kilcoole. It was a small modest little place that was utterly packed with people.

Nothing can prepare you for the sadness one feels at a time like this. I honestly have not felt sadness like it ever before.

The priest did a lovely eloquent job of acknowledging the tragedy, comforting the family and honouring Roberts’s short life.

After the service I went to the parents to offer them my condolences.

Roberts mum gripped my hand saying:

‘Please continue doing what you are doing. The only thing that gives us strength is that Robert was doing charity work before he died’

I have no idea where she got the strength to say these words. They are probably the most powerful words I have ever heard. I was utterly humbled by their power.

****

The following day Robert’s funeral took place. Cormac Lynch (the CEO of Camara) paid a glowing tribute to Robert thanking him for his great contribution as a Camara volunteer to the people he had served in Tanzania. It was a very difficult thing to do and I was immensely proud of Cormacs courage and compassion. One of the things that Robert hoped to do was to organise a music concert in Tanzania as a fundraiser for the projects he worked in. By all accounts he was a great guitar player.

A large group from Camara were in attendance and we all went up the family house after his burial.

Once again Robert’s parents urged us to continue the work of Camara and to do so in his memory and honour.

****

I was struck by the plans Robert had to organise the music concert in Tanzania. Music can be a tremendously unifying force – a truly universal language that everybody can participate in and enjoy. All the great composers appreciated this. Gustav Mahler actually believed that music was so powerful it allowed you influence fate.

By removing the third hammer blow in his 6^th symphony Mahler attempted to change his fate. He continued in that vain for the rest of his life. All the great composers he respected prior to him had never got beyond composing a ninth symphony (Beethoven, Bruckner, Schubert) and so he named his 9^th symphony ‘Das Leid von der Erde’ – ‘The Song of the World’ rather than number it. When he did finally compose a 9^th symphony he died shortly afterwards. He left, like his great composer compatriots, an unfinished 10^th symphony.

Do numbers matter? Who knows….but that strange text I got highlighting the importance of August 7^th 2009 had a strange resonance with the events that day.

****

To some the number 8 is the symbol of eternity. There are also 8 beatitudes, 8 notes to an octave, 8 millennium goals, 8 bits in a byte, 8 spokes in the Dharmacakra and August is the 8^th month. So here are 8 seeds of hope that I have come to notice since Stuart and Robert passed away:

One of my former professors rang me a few days after Stuart had died. He had come across another person in a similar situation to Stuart and was wondering would the family be interested in arranging a ‘technology transplant’ to this person. In other words would it be possible to literally pass the computer and technology we used with Stuart to this man and so continue the legacy. I asked the family would they be interested and they were. Stuart, as was his wish, had donated his organs. This seemed like a lovely way to mirror that gesture through technology.

I ended up meeting the software company that donated the speech recognition software system to Stuart. They had been filming Stuart as a ‘power user’ of his system the week before he passed away. They showed the film as a work in progress and again the abiding message was Stuart saying that he was going to battle on despite everything. The film will be used to promote the use of the software in the area of disability.

The BBC had also been doing a documentary on Stuart. They contacted me and asked would I help finishing off what had been done so far. I said I would.

We had been building up a network of people who were keen to stay involved with the project. A number of people want to continue the work in Stuart’s memory including a young man who had been working on developing a unique head rest of Stuart. He wants to continue that work based on the design insights Stuart had left him with.

We had developed a simple system for Stuart that allowed him text his friends using his mobile phone. The same system is used by a friend of mine who has cerebral palsy. He is utterly delighted with it.

Two colleagues from Camara got engaged in East Africa two weeks after Robert passed away. They had met in Africa a few years ago and would probably not have met had Camara not been in existence.

Camara will continue its work in Robert’s memory.

Osian and I finally got to the Skelligs and our relationship has profoundly deepened.

****

I am on page 9 of this note and it feels like an unfinished symphony…..

To Stuart and Robert may you both rest in peace.

Hard Choices

I have often written about how good the medical system out here is and that I would have no problem using these medical services if I happened to get seriously sick. What I have of course neglected to mention is that expert medical care is way beyond the means of the vast majority of people living out here. Thats why its so good for those that can afford it - the private hospitals are nearly empty...

The following story really brought it home to me the really hard choices people have to make when they are faced with a serious medical emergency that they cannot afford.

It turns out that if you need to have a heart operation in Kenya, it is cheaper to fly to India, have the operation there, recuperate in India and then fly back, than to have the operation in one of the 'private' hospitals here.

A Camara colleague's father (based here in Mombasa) had a minor heart attack about 2 months ago. He was recommended to go for an angiogram (a standard test these days in the developed world where a catheter camera is inserted into the coronary arteries via the leg and they are examined for occlusions and disease using the camera together with a CT scan).

He was unable to pay for the operation so he spent the last two months asking friends, family and foundations for the necessary funds to fly to Madras in India and have the operation done there.

In the end with considerable help from the International Lions organisation he raised sufficient funds for himself and his son (my colleague) to travel to India for the operation. Even with the two people flying, it was still less costly than having the operation done here.

They flew out to Madras about two weeks ago.

And then things began to go wrong.

The first problem is that my colleague has serious responsibility here in the digital hub. He was the first employee and effectively founded Camara Kenya, he signs all the cheques and essentially is responsible for all technical operations on the ground here. In a very short space of time he had to delegate a lot of responsibility to people still very new and inexperienced. Inevitably some key responsibilities were going to be missed. In this case,he forgot to make another person a signatory on the Camara account here. Effectively that meant that no-one could sign cheques.

The second problem arose after the angiogram was done. The doctors in India recommended that the father undergo heart surgery rather than the more straight forward angioplasty operation(an operation which essentially involves widening blocked arteries using a balloon and stents supports inserted via the catheter). The gamble had been that only angioplasty would be required as the recovery time is much quicker. My colleague was hoping to be back in Mombasa within 10 days.

As an aside, in an amazing example of the power of technology, my friend emailed me the angiogram scans from India which I forwarded to St Vincents hospital and within a few hours the diagnosis was confirmed. Heart surgery was required. In an ominous sub note, the advice from Vincents was that it would be up to 2 months before a person could fly after undergoing heart surgery.

A week ago my colleagues father underwent quadruple bypass heart surgery - a ten hour operation which without going into the sordid details is an extremely traumatic experience for even the fittest of bodies.

The father has been in ICU all this week and has underwent another emergency operation to drain his lungs after he developed complications breathing after coming off the ventilator. All the while, my poor colleague has been watching the drama unfold around his dad, whilst sleeping in the hospital, in an alien country, utterly helpless to do anything.

We have been ringing one another daily for updates.

And then the final complication. A container of 400 computers is sitting in Mombasa port and needs to be cleared through customs. The only person who can sign a cheque for the container is my colleague in India.

If we do not clear the container quickly, we incur charges that mount by the day.

As I write this the problem remains unresolved. Here is what we have had to do. We have asked my colleague (with all that is going on over in India) to DHL a letter to the bank in Mombasa authorising the transfer of funds to another account so that the container charges can be paid.

The problem is that there is not enough money in the camara account as a couple of cheques are being cleared before money can be transferred. It takes a long time for cheques to be cleared in banks here for understandable reasons.

In the meantime, funds are tight in Ireland. When you send almost 100 people to Africa, which essentially involves paying for 100 flights at about 1000 euros a go you can have cash flow problems. We are in overdraft in Dublin presently.

Despite that, Camara Ireland has transferred some money to my personal account just in case the complicated payment procedure fails (I hope the CEO and board forgive this indiscretion - I feel a little like Father Ted having to justify this large sum of money just 'resting' in my account - but to be honest there was no other way of doing things).

Its all going to be very tight because I leave Mombasa on Wednesday morning.

And so this is what can happen to people here when these hard choices are made. I blame nobody for the mess. Its utterly understandable given the choices people had to make but look at the consequences....

On a positive note the volunteers from Ireland have arrived and training has begun in earnest.