In February 2013, Social Entrepreneurs Ireland sent me on the trip of a lifetime to meet social innovators in India. We started in Bangalore; it was wonderful, perfect weather, incredible people and the best food I’ve ever had. Our social journey began with a visit to Selco an organisation helping to provide solar panels to some of the 400 million people living without electricity in India. Over 100,000 people now have power for the first time and no longer have to breathe in the toxic fumes of kerosene.

‘Quietism is the attitude of people who say, “Let others do what I cannot
do.” The doctrine I am presenting before you is precisely the opposite of
this, since it declares that there is no reality except in action. It goes further,
indeed, and adds, “Man is nothing else but what he purposes, he exists only
in so far as he realizes himself, he is therefore nothing else but the sum of
his actions, nothing else but what his life is.”’ (“Man Makes Himself” by
Jean-Paul Sartre)

Since Steve had his stroke in 2006 I had not spent a night away from him and our girls. Since our eldest daughter was born almost 13 years ago I had chosen not to go away without them. The fact that I left them behind to be part of the Social Entrepreneurs Ireland residential hints at the significance it holds for me.

As each of us arrived on a rain soaked June day, we were directed to one of the cottages where the Social Entrepreneurs Ireland team was staying. There we drank coffee and chatted while they cooked for us. It felt as though we were guests in their home and yet we felt at home; this feeling would resonate throughout the days that followed.

After this there was a little time to settle in to our cottages where I met the one of the two inspirational women with whom I would share my home. We barely knew each other but that changed so quickly. Over the following few days there was no need for polite social barriers or clever remarks to hide behind. I felt a connection to both of my housemates that should have taken years.

Our first group meeting was held in the living room where we had all been made so welcome. We sat on chairs and cushions as we munched on snacks and chattered. The introductions were warm and encouraging and set the atmosphere for an event that everyone in the room will carry with them.

We had been asked to bring an object that represented some element of why our lives had led us to this point. As we moved from person to person each spoke with an eloquence born of honesty and selflessness. They told stories of grandparents who set the moral standards, sons who lit the way to a fulfilling life and strangers who called to them across thousands of miles. As I listened I realised that I had not just journeyed through the beautiful Wicklow countryside. This was a new place, a place where men and women sacrifice superficial rewards for something far more satisfying, a place that Sartre may have written about, full of individuals who are true to themselves and their path, a place where people are authentic.

After that, there were many wonderful moments as knowledge passed from one to another and songs and stories were shared. Those days have changed me. I feel less alone. I know that I have shared a magical time with extraordinary people. Those memories will remain with me as a reminder that there really is hope for a better future.

I remember the first time I went to Trinity College Dublin. It was my leaving cert year and I had been invited to the Trinity Ball. As I stepped through the gates, the noise of the traffic disappeared and the grey cityscape was exchanged for the magnificence of the Exam Hall and the music of Strauss. I remember feeling as though I had been transported into a perfect oasis.

Last week while driving to the SEI Bootcamp, I was battling with traffic and listening to radio reports of corruption, inhumanity and cruelty. But stepping into the Ryan Academy brought back memories of my first experience of Trinity College, as once again all the noise of daily life disappeared and I entered another oasis. This is a place where exceptional people come together to celebrate the safe havens they have been building for others. Whether they are helping children to achieve their dreams, supporting the families of prisoners or protecting the independence and dignity of the blind; these are selfless people, driven by the desire to create real change and an oasis for the recipients of their work.

The presentations we heard were all very different in style and content but there were common elements. Each presenter spoke with passion and told stories filled with the emotion that comes from a genuine commitment to something greater than oneself. They were also characterised by a warmth and humour that comes from doing something that you love.

This was the second time I had the privilege of attending the SEI Bootcamp. I have stayed in touch with many of the people I met last year. We have worked together, supported one another and become friends. Last year I began with tentative introductions, this year I shared warm hugs with old friends. I have already received emails from some of the social entrepreneurs I met this year and I am excited about the new relationships I am starting to build.

Whatever happens next, I will always be grateful that I am part of a community working so hard to build a better future. Who knows, maybe one day all those tiny oases could meet but until then I know that we will all keep building.

Over the past few months my blog has stopped appearing, my Facebook has stopped posting and my Twitter has stopped tweeting. There are lots of reasons for this, the main one being my intense focus on an incredible opportunity that I had to grab with both hands.

Research & Hope is a labour of love. I poured my heart and soul into creating the website and I am just as passionate about my ‘baby’ as I was at the start. However, I also poured every penny I had into it (and quite a few I didn’t have!). So I spent several months searching for ways to make it financially sustainable.

I phoned and met everyone I could think of in every arena from the commercial to the charitable. I frequently met with praise and critical acclaim, followed by a swift apology that there would be no funding. Until I went to National Digital Research Centre (NDRC) and spoke to Mark Kearns Project Director for the NDRC’s Inventorium programme: http://www.inventorium.org/

At first he gave me a similar response. But then he paused… “What else do you have?” he asked. I began to explain numerous ideas I had been working through, although I had been thinking of these as ‘phase two’: things to work on after Research & Hope had become self-sustaining. With the gifts of lateral thinking and insight typical of NDRC, Mark started to unpick one of my ideas: an application for mobile devices designed to address severe communication difficulties that often lead to social isolation. “This sounds more like something we can work with,” he said, and he advised me to download an application form for LaunchPad, a three-month programme for high-potential start-up companies: http://www.ndrc.ie/launchpad/

I couldn’t believe my luck when I was joined by two incredibly talented business partners. Catherine Sweeney, who has many years’ experience in senior IT operations and management with high-profile international companies; and Vinny Reynolds, who was working at the Digital Enterprise Research Institute while completing a doctorate in computer science.

We filled in forms, pitched our ideas, and won a place on the LaunchPad programme. It began in September 2011 and it has been a phenomenal experience. We have been mentored by experts; talked to by entrepreneurs in every field; trained by professionals; and really looked after by an intensely knowledgeable and compassionate staff.

We are now testing our products and preparing the way towards launching the fruit of our labours: Neuro Hero. Neuro Hero is a subscription-based support package, designed to tackle problems of isolation often experienced by people living with communication difficulties. Neuro Hero will be available for iPad and other mobile devices as well as PCs. It includes six key elements, each of which help families to communicate with each other and rebuild relationships. Our software adapts to the level of each user and can be used anywhere. Neuro Hero‘s activities are designed to be therapeutic, fun and interactive. To view our work so far, please go to: www.neurohero.com.

As soon as I can, I will return to Research & Hope and continue the work I have started. But I will also pursue this new passion. Neuro Hero offers people like Steve a chance to communicate with the outside world again. It offers family carers a chance to grab a few moments to themselves while friends and family interact with their loved ones. And it offers people who spend so much time alone a chance to re-connect with a world that has left them behind.

Today, I hosted the first ever Research & Hope event. When I realised I had the opportunity to host a talk by Professor Vincent Walsh on ‘Brain stimulation and stroke’ I was thrilled … and then I panicked.

I have attended and spoken at numerous lectures and conferences but I had no idea how to organise one. I am very grateful, therefore, that Care Alliance came to my rescue. They agreed to co-host the event and to include it in their line up for Carers’ Week. In fact, they organised almost everything and guided me right down to the last detail. I had come into contact with Care Alliance by chance when I was asking for advice on a completely unrelated matter. I corresponded with Liam, who is amazingly dedicated to his organisation. He was (and is) an immense help to me and, from what I can gather, to many others as well.

It was particularly apt that our first speaker should be Professor Walsh. Our association began in January 2008. It had been two years since Steve had had his stroke and the doctors had informed us that he would be unlikely to improve from that point on. He had finished most of his allotted therapies and we were fighting for a couple of hours of community physiotherapy. I knew that his only chance of recovery lay in my attempts to find something – anything – outside of standard medical treatments.

As I scrolled frantically through the Google listings, I came across a research paper on Transcranial Magnetic Stimulation. It looked like an alien torture device, with large coils held in place on the subject’s head while it emitted magnetic pulses that interfered with thinking and speech. Up to that point, I had been reading and trying to make sense of things on my own but this one really fascinated me. I decided to contact the author of the paper.

People often talk about those pivotal moments in life: a chance meeting, a lost letter, or a phone call. I picked up the phone and, to my amazement, got through first time. The professor not only spoke to me but offered his help. He sent an email to his colleagues, asking if they had any suggestions that could help Steve. His response might not have resulted in a miracle cure for Steve but it gave me an immense boost. For the first time since Steve had had his stroke, I felt I could connect to a wider world of research and expertise, that they would talk to me, and that they would take me seriously.

This got me thinking about the work I was doing for Steve. Remaining true to my academic training, I had all my notes meticulously referenced and written up. As an undergraduate, our wonderful professor of Philosophy (and author of ghost stories) John Gaskin had warned us that “in a few weeks from now you will be as a stranger to the person you are today, so write your notes for that stranger.” I realised that with the help of real experts, I could make my research available to other stroke survivors. I tested the waters by phoning and emailing neurologists, researchers and authors in a variety of disciplines from all over the world and I was amazed by how many gave me their time. That was the beginning of what was to become the Research & Hope website, a venture I intend to expand for many years to come.

I recently heard a sermon on how a single good deed can send out ripples resulting in a tidal wave of beneficial consequences. It made me consider how fortunate I was that my first attempt to make contact with an expert resulted in a response that empowered me to create the Research & Hope website.

Or perhaps it had nothing to do with luck…!

I seem to have lived many different lives. I have studied and worked in various countries. I was a university student, part- or full-time, for 12 years; I have had several careers, from lecturer to business consultant; I have been a girlfriend, a partner, a wife and a mother. As I moved through these different phases of my life, I simply adapted. I seemed to know how to adjust to each new situation, more or less! While moving through these stages, there were other reasons why I had to adapt: at one point in a day I might be running relaxed tutorials on the nature of reality, while later on I could be shouting instructions in Japanese and pushing a karate class to kick higher, punch faster and stay alert. Then I would return home to be a mother, with hugs and cuddles before lighting candles for a family meal on a Friday night. All the time I was changing and adapting to the role I needed to embody, without thinking or even realising how much of a chameleon I was.

I was shocked, therefore, that I could not adapt to being a carer. For the first couple of years I did what was necessary. Everyone was looked after, warm and fed. But I was not easy with my new role. I constantly felt I was in a strange land with customs and cultures I simply didn’t understand.

I puzzled over my inability to fit into this new life, since it had always seemed so easy to slot into different circumstances before. So I started to revisit some of my old lecture notes and books. It began to make sense when I re-read my notes on how learning works. There is a theory called Situated Social Learning. In general, the idea is that we learn by spending time living various situations as we grow up. We might start by watching our mother bake a cake; then, we are allowed to stir the mixture; and little by little, we do more to help until we learn to bake by ourselves.

When I thought about my life, I realised that, little by little, I had learned how to be a good student, how to build relationships, and all the other skills needed to live my various lives. However, at no point had I experienced the very specific set of circumstances that could have taught me how to be a carer. Yes, I had learned how to be a mother, first by playing with dolls, then by helping family and friends with their children, but this is entirely different from caring for a disabled adult. A mother has a set of milestones and guidelines. We have a sense of when most babies move from milk to solids, from crawling to walking, from childhood to teenage years. As a carer, you don’t have those markers. For many people, there is very little to guide them through the minefield of shaving a man for the first time, or lifting the dead weight of paralysed limbs onto a commode, or trying to interpret the sounds that used to be the elegant words of an inspiring mind.

This is why I have created the Carers’ Sanctuary Magazine. I cannot be the only one who was not prepared to become a family carer; there must be others who feel the dislocation and alienation in this strange landscape that has become their home. As time has passed, I have learned and adapted a little more each day but talking to other carers, reading their experiences and learning from their stories has been an immense support. In creating this magazine, I wanted to provide an oasis, a sanctuary where a family carer could escape to a world where everyone understands, where we are all living in the same strange land, where we can reach out and help each other to feel at home.

As I scramble to complete the final documents for Social Entrepreneurs Ireland, I’ve been thinking about my journey so far. SEI are running an extraordinary competition that awards three winners an equal share of €500,000 in grants and support. I could have waited until the end of the process, until I knew whether I had been successful, before writing this blog. So far, I have reached the final 18. This is the day before I submit my final documents to see if I can progress to the last eight. I chose this moment because it is filled with hope and that has been the driving force in my life for the past five years.

At the end of 2010, in my search for grants, I contacted Headway, who had been supporting me. They put me in touch with Care Alliance, who advised me to contact Social Entrepreneurs Ireland. Despite the volume of entries they receive, I decided to commit my time to filling in their substantial entry form. As a result, I was invited to their Bootcamp.

It was an incredible day. It felt like my first day at university, filled with expectation and excitment. Although I’m usually reserved in a room full of strangers, I knew that we were all there for the same reason. I found myself chatting comfortably with one incredible person after another. I met a woman who had created an app to help autistic children and a man who was running a long-term residential programme for addiction; some people were dedicating themselves to giving children the support they need to begin a fruitful life, while others were offering spiritual comfort to those at the end of their lives. Throughout the day, as we met and explained our projects, I heard one phrase over and over again: “There are so many other people here that deserve to win.”

We are so used to hearing politicians, athletes, game show contestants and many others telling us forcefully: “You should vote for me … I should be the only winner.” Yet, in this room, I stood with 41 people who had given up their lives to enhance the lives of others without promise of reward or recognition. Despite their obvious passion for their own projects, they still had such honest generosity. In the midst of a recession caused by self-seeking money-grabbing, I saw another side of Ireland: a side where individuals quietly and steadfastly work behind the scenes to bring about lasting social change.

We have lived so many centuries since David Hume wrote An Inquiry Concerning the Principles of Morals. Maybe one day, more people will recognise his foresight and wisdom when he wrote:

‘Upon the whole, then, it seems undeniable that nothing can bestow more merit on any human creature than the sentiment of benevolence in an eminent degree, and that a part, at least of its merit arises from its tendency to promote the interests of our species and bestow happiness on human society’

Added in May 2011:

I now know that I did not make it into the final eight of the Social Impact Programme. While I am disappointed, to say the least, I also feel I have already won prizes beyond valuation.

I attended the Social Entrepreneurs Ireland 2011 Summer Alumni Event last week. From the beginning I was blown away by the speakers, the people I met and the incredible atmosphere.

The speakers and videos were fascinating and Madame Betty Nyagoha, principal of Gatoto Primary School, was beyond inspirational. As I sit here in my comfortable semi in Lucan, I cannot imagine the strength and courage she embodies. She puts everything into perspective. I met several people during the facilitated networking who said they would like to help me with Research & Hope and I heard from them the next day. In addition, our table was given the task of working on our respective problems and we agreed to continue our work by meeting up once a month.

The event provided emotional invigoration, intellectual stimulation and a list of practical steps I can take to move my project forward. I feel privileged to have been included in such company. It was a landmark day for me.

I will enter the competition again next year but, for now, I will keep working with renewed energy.

Over the past few years, I have spent many waking hours sitting alone in front of my computer. Every time I sat down I knew that my research would help Steve but I didn’t know if anyone would be interested in the website I was creating. So many elements were needed to create Research & Hope, from hour upon hour of web design to searching for the right words to capture a treatment. Some highly intelligent and sympathetic ears had listened to my ramblings about its potential. But in the end it always came down to me, my computer and the silence.

I had had a similar experience before. When I began my PhD, I struggled to find a supervisor who would believe that the project I had planned could be done. For many years I worked alone, attending the required number of meetings while they all told me my project was too big, too complicated, maybe even impossible. I have never been a very confident person but I simply believed that I could do it, even when no one else did. I eventually returned to Trinity College Dublin to finish under the guidance of one of my undergraduate professors, who helped me immensely. My doctorate was well received by the small group of academics interested in that sort of thing. For me, the most important thing was that I had proved to myself I had not wasted eight years of my life.

I launched Research & Hope on 15 February 2011. It is now 13 March. In that short space of time I have been overwhelmed by the positive response. I have received so many incredible emails and encouraging comments, so many people asking for advice and so much support. Ordinary people are sharing their stories with me and I realise more each day that I am not alone. My fears and feelings of helplessness and hopefulness are shared by others who truly understand.

The media response has also been unbelievable. So far, we have been featured by five newspapers. I have appeared on television and radio and there is more to come. When I appeared on The Morning Show, I was amazed that Sybil took the time to visit us at home. She was warm and friendly, staying for coffee and a chat. My time at the TV3 studio was a real treat. Producers and presenters came to talk to me, make-up artists worked on me and the whole experience was wonderful.

I knew being a guest on a radio show would be a very different experience and that everything would move at a much faster pace. However, I wasn’t expecting the compassion and empathy I found when I met Matt Cooper on The Last Word. He took extra time to make me feel comfortable and I wondered if he had put himself under pressure by spending double the time his assistant had said they could allocate to our story.

I still spend many hours a day in front of my computer but the silence has a different quality now. It is filled with echoes from emails and comments I have received. I can almost smell the make-up from The Morning Show and feel the electric buzz of the Today FM studio. As I sit here on my own, I no longer feel alone.

The website is finally live. Years of work and anticipation are a thing of the past. Yesterday http://researchandhope.com was born and today I am preparing for a TV interview.

For some reason, an image keeps popping into my mind of teaching classes in metaphysics. “What time is it?” I would ask the class. This was followed by many surprised and confident answers. Then I would follow with, “What is time?” I would get just as much surprise but very few confident answers. As I thought about why this scene was playing over in my mind, I remembered that among the complicated and intricate answers to the question “what is time” my favourite was always this: “Time is the permanent possibility of change.”

In a way that thought has driven me from the time Steve had his stroke to the launch of this website. Every second that passes represents an opportunity to make a change. No matter what the prognosis, as long as time is passing there is a chance to change the outcome.

Despite missing the opportunity to attend school for most of his childhood, Steve had educated himself. He was one of the wisest and most intelligent people I have ever known. As his karate students struggled to inhale during another gruelling session, Steve would bellow, “This time will never come again! You are only cheating yourselves if you don’t make the most of it.”

I have always hidden from cameras. As a consequence, there are very few family photos that include me. Now I find myself posing for the press and sitting in front of TV cameras. No matter how I feel, I believe in Steve’s words “this time will never come again” and I have to make each moment count so that in my future, I can look back and know that I didn’t waste any opportunity.

As we get ready to launch the Research & Hope website, I am faced with a moral dilemma that would make any budding philosopher proud. Do I hold fast to my ethical principles, or earn enough money to speed up the research and help more people?

At the moment, Research & Hope has the potential to help numerous stroke survivors, but this is not sufficient. There are so many people that we could help: those suffering from Parkinson’s disease, acquired brain injury, cancer, and a vast array of other conditions. The longer it takes us to generate these sections of the website, the longer people suffer needlessly. As soon as the website starts to make money, I intend to employ researchers. Using the systems I have designed, it would take around four months for two researchers working full-time to generate discussion pages on 20-25 potential treatments for a chronic disease such as Alzheimer’s.

The main source of funding for the website will come from sponsorship. The idea is simple: I will find one sponsor for each potential treatment. But who should I approach? For example, it would be relatively easy to get a stem cell clinic to sponsor the page on stem cells, and I could follow this model until I had made a tidy sum, but I believe that this would compromise the integrity of the website. Like every good philosopher, I want to show both the arguments for and the arguments against each course of action. I can’t imagine this type of sponsor gleefully handing over money while I explain all the potential problems with their treatment. In addition, the entire website could potentially be perceived as a series of advertorials promoting a collection of vested interests.

According to the great philosopher Immanuel Kant, when you are faced with a moral conflict, you should follow his fundamental rule (Categorical Imperative). The gist of his rule is this: imagine that your actions become the rule that everyone will follow. As I reflected on that, I thought, “No, this is not the way I would like every future website to be organised.” I had to come up with another solution.

The second option came from my philosophically-minded web designer, Paul McDonnell. His idea fitted more neatly with one of my favourite philosophers John Stuart Mill’s idea of ‘the greatest happiness for the greatest number of people’. His proposal was this: I should look for sponsors that are one step removed from the therapy they are going to sponsor. For example, Music Therapy could be sponsored by a large chain of music shops. This would allow me to hold onto my ethical principles, while still gaining some sponsors. Fantastic!

The only problem is this: Paul’s idea is great in theory, and when Research & Hope is widely known, I’m sure it will be the perfect solution. However, at the moment, I am finding it very difficult to get past the switchboard of a major music outlet, or a supermarket chain, or a large book retailer.

As I said in my very first blog, I believe that there is an answer to every problem, even though it is not always easy to find. At the moment, I stand with Socrates: I am very aware that I know nothing!

If anyone out there can advise me on how to reach the sponsors I need to keep the research flowing, please contact me. If you know a potential sponsor or a philanthropist, please direct him or her to this blog, or to the website, which will be at www.researchandhope.com in a week or two.