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…!