From solitude to support: reaching for the impossible … again
For the first five years after Steve’s stroke I spent many waking hours sitting alone in front of my computer. Every time I sat down I knew that my research could help Steve but I didn’t know if anyone else would be interested in the website I was creating. So many elements were needed to create Research & Hope, from hours of web design, infinite reading lists and endless searching for the right words to explain each 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. In the end 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 15th February 2011. It is now February 2014. During that 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 have been 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 was also unbelievable. We were featured by numerous newspapers. I have appeared frequently on radio and television. My first experience on a chat show was extraordinary; I was invited onto The Morning Show. I was amazed that the host, Sybil, took the time to visit me and Steve 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 did my first interview with 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.
Neuro Hero Neuro Hero Blog Research and Hope
MAR
2011