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.

I have always been a perfectionist. For many years, it was a constant struggle to liberate anything, from my writings to my physical form.

However, years of karate have taught me that perfection is infinitely beyond my grasp.

After more than eight years of practicing karate at least four times a week, I was sitting with the senior students as they told their epic tales of battles fought, injuries sustained and the weird and wonderful characters that had graced our dojo (training hall).

Then they told a story that related to me. “You,” it began, “were the worst beginner we have ever had…” While striving for perfection in every movement I had revealed that I had no natural coordination, no fitness, no ability to remember the moves, and a natural gift for turning the wrong way at every opportunity. This news came as I was preparing to take my black belt exam.

While working towards my black belt, I had started to train at least twice a day, six days a week. I maintained this for more than five years in an ever-present bid to attain that elusive perfection of movement. Now, after 22 years of karate training, I understand this: what I have learned about perseverance, self-acceptance and facing my fears is so much more valuable than attaining the perfect punch.

As I nursed bruises and broken bones, I would read and re-read Miyamaoto Musashi’s The Book of Five Rings:

‘…determine that today you will overcome yourself of the day before, tomorrow you will win over those of lesser skill, and later you will win over those of greater skill.’

Now I am about to launch the Research & Hope website. I want to share every piece of information about stroke recovery; I want to read and evaluate every clinical trial; I want to speak to every researcher around the world; I want to…

I need to remember that I can strive for perfection but I have to accept my limitations.

The website I launch will be the first step on a journey. I cannot promise that I have read every paper ever published on every treatment that I discuss. I cannot guarantee that each treatment will work for each stroke survivor. What I can do is promise that I have worked tirelessly to bring together as much useful information as I can for stroke survivors and their families. I can also promise that I will do my utmost to keep the research up-to-date and that I will produce a similar body of work on Parkinson’s disease, Alzheimer’s disease and acquired brain injury just as soon as I can.

What I discovered through my practice of karate has been confirmed in my search for new treatments to heal Steve. There is a desire to get it right first time, to find the perfect cure. When a treatment works we feel elated and then disappointed that it did not achieve more. Some treatments have not worked for him at all and there is always the temptation to give in to despair. It is at those times that I remember what I have learned from practising karate, a lesson neatly summarised by Samuel Beckett every time I look up from my computer and see the postcard pinned in front of me. It reads: ‘No matter. Try again failing. Fail better.’

When I thought about launching Research & Hope, I envisaged all kinds of potential obstacles. Could I complete the research? Would anyone be interested? Would the medical establishment recognise my work? As it turned out, the answers were all positive. I have been able to research 24 treatment for stroke so far; everyone I have approached with the demonstration site is extremely interested; and some members of the medical establishment have been working with me. I have even been invited to join a group of ‘friends’ of James Connolly Hospital in Dublin to discuss stroke.

What I could not have predicted was the snow! Two weeks ago, I was ready to meet my web designer, Paul McDonnell. We were going to finalise what he calls the “bit under the bonnet” of the website and then finish the task of blending design with function. I have also been working with a small, but brilliant, team who are helping with some of the research, proofreading, getting permission to use photographs and so much more. We were all supposed to meet Paul, so that he could teach us how to turn a computer full of data into a friendly, useful website.

Instead of frantically working to bring the Research & Hope website to life, I am sitting here looking through my window at thick snow, treacherous roads, and the ice sculpture that was once my car. Despite frustrations and setbacks, however, I will get this website live as soon as is humanly possible. It may not happen by the new year, as I had hoped, but it will happen. I always have to remind myself to take a step back, accept that there are things I cannot control, and try to take charge of what I can control. This is my attitude to what is happening. As Marcus Aurelius, one of the Stoic philosophers, wrote:

‘If you are distressed by any external thing, it is not this thing which disturbs you, but your own judgment about it. And it is in your power to wipe out that judgment now.’

One of the big questions in the philosophy of religion is this: ‘If the Almighty is all good, then why is there evil in the world?’ There are many possible answers, but one view states that terrible situations produce good deeds and actions. I have debated this many times over the years but my experiences since June 2006 have enabled me to better understand this answer. I have been on the receiving end of immense kindness and true altruism, which have allowed me to emerge from the shock of Steve’s stroke and the blinding grief of my sister’s passing. This blog is an opportunity for me to thank some of the many remarkable people who have never looked for credit nor sought my thanks.

I sat with Steve for most of the first 48 hours after his stroke. No one could tell me if he would survive. On the third evening I began to collapse. I had only seen my children for a few hours and I knew that I needed help. I phoned one of Steve’s most senior students. Within a few minutes he was in his car driving from Galway to Dublin; he stayed with Steve all night and drove back to Galway to start work at 9am the next morning.

We live in a small road on a large estate in Lucan. Within days of Steve’s stroke many of my neighbours had offered help. One young mum, pregnant with her second child, looked after both Gina and Tanya while I went to visit my sister in the hospice at night. Another neighbour performed religious rituals to bring us health. A few months later, when Steve was allowed to have home visits, some of the men on the estate would keep an eye out so that they could help me to push his 17 stone up the steep ramp into our home. For month after month Steve’s niece Ashling looked after Tanya as though she was her own baby and was wonderful with Gina. My Cousin Rejin flew half way across the world to stay and help for a couple of weeks. The list goes on of former strangers performing quiet, selfless acts, each one giving us strength and support, no one asking for thanks or recognition.

When Gina started first class in primary school I told her teacher and a few of the mums what was happening. A few days after that I heard the doorbell ring: one of the mothers from her school was standing there with a roster in her hand. The parents and teachers of Griffeen Valley Educate Together had planned out every day: they would do the school run, bring Gina back to their houses, give her lunch, dinner, warmth and support. This went on for months. One of the mothers took Gina to sleep over once a week; another came over, cleaned my house and left with black sacks full of ironing; yet another drove the children to the hospital to be with us; and so it went on. I remember bringing Gina to school one day and wondering why I had not received the usual note telling me that there was a sale of work. I headed on to the hospital without giving it a second thought. A little while later I understood; the school had the sale of work to raise money for us. When I had problems getting planning permission to adapt the house for Steve’s needs, the neighbours rallied once more and, with tremendous support from Councillor Derek Keating, we could move Steve’s bed out of the living room and he could have a shower instead of the dignity-destroying blanket baths at the kitchen sink.

When I started working on the Research & Hope website I was not expecting to meet much altruism. After years in the world of education I knew that I was entering the arena of business. I could not have been more mistaken. I have been astounded by the generosity and selflessness of some business people. A friend of a friend, Niall Delaney, an expert in public relations, heard about my website and offered assistance. For the past several months he has been helping me to find sponsors without charge. For six years I was a part-time communications consultant with Carr Communications. When I spoke to my former boss, Donal Cronin, he asked me to show him my web demo. Within the week I was sitting in their offices accepting an offer of help pro bono. I was not expecting this, although it reminded me that they had sent me an additional cheque when Steve first became ill and welcomed me back to work when I was ready. And then there is Headway, the organisation for acquired brain injury. They have supported me in so many ways, from introducing Steve and me to the producer of Prime Time so that we could appear in their feature on stem cell therapy to inviting me to the Mansion House for carers’ week and creating a link to this blog.

It is so easy to give in to despair, and from time to time I have, but these acts of kindness have always brought me back into the world. There are so many truly good deeds that I cannot list here, but each one brought me closer to the view that I had to give something back and find a way to say “thank you”. This has been part of my motivation for creating the Research & Hope website, a desire to share information that could help others. In the words of the American film, I would like to “pay it forward”.