I floated out of my mind for a flurry of seconds and then I was back in the lab, on a bench. Like so many of the new feelings I’ve felt this past year it is hard to describe. It was a bit like the floating I felt on morphine in intensive care. But that didn’t matter. What mattered was what the scientists were looking for on the computer screen. They were electrically stimulating a part of my brain so they could see whether there were intact descending nerves despite my damaged spinal cord. And what really matters is that we were performing these tests at all! That this research is happening here in Dublin.
We’ve created a paralysis research program in Trinity College Dublin and we couldn’t have done it without the support that so many of you have given the Mark Pollock Trust. Thank you.
The Trust now officially funds a full-time researcher, Neil Fleming, PhD who will run our collaboration with the American and Russian scientists.
If I take paralysis out of the analysis, this is an incredible milestone, the culmination of lots of hard work and effort. But I’m also frustrated. This past year, since the end of the UCLA trial and starting again here in Dublin has felt like we were standing still. Spinal cord injury research should be progressing faster and the trials should be bigger, more ambitious. Christopher Reeve used to urge the scientific world to work faster and harder and that call is still urgent.
Paralysis has to be part of the analysis of this announcement because paralysis is so devastating for every person living with a spinal cord injury. Every day I wake up I detach a bed bag and hand it to my carer, who helps me to get out of bed, wheels me into the shower. I get dressed sitting on my bed and then I roll to the lab, again only with the help of my carer. It is a paradoxical situation: I resent that I have to rely on my carers for everything, while being so grateful that they are there; I am lucky to have them at all. The creation of this trial is great, but I would trade it in an instant to be able to feel and control my body again. And this is what drives me to try to change the impact of paralysis on people and on those who love and support them.
With Professors Reggie Edgerton of UCLA and Yury Gerasimenko of the Pavlov Institute, Neil and the team here in Trinity will study the paralysed body’s response to innovative electrical stimulation of the spinal cord combined with a drug to super-charge the nervous system while I walk thousands of steps in my robotic legs.
It’s also fitting that my university, Trinity and my colleagues, Dr Nick Mahony and Bernard Donne, who I’ve known since the good old days when I could both walk and see, have helped to make this happen. Nick and Bernard tested me in Trinity’s Human Performance Laboratory when I was trialling for the Irish lightweight rowing squads and again after I went blind and began taking on desert endurance races. And last month they were hunched over the computer alongside the American and Russian scientists looking to see what happened when I floated out of my body for that flurry of seconds. They created the space and gathered the expertise for us to do this trailblazing research and I can’t ever thank them enough.
Over the next twelve months I will spend most of each week in the lab, or walking while being electrically stimulated. That’s another feeling that’s hard to describe. The electrical stimulation on my back and the drug in my system when I’m walking in my robot make me aware of my legs beneath me and I can join in the walking enough to break a sweat. It doesn’t feel normal, like the way I used to feel my legs, but after five years of paralysis it is fantastic to feel and we know from the data that feeling is well worth pursuing.
This is the beginning of something. Something exciting, something that I hope will move us closer to the cure. So, it’s time for a small celebration, just so long as we keep our eye on the prize – to be able to take paralysis out of the analysis for everyone.
