As someone who for the majority of his life has experienced almost complete blindness resulting from Leber’s congenital amaurosis, With the advancing march of medical science, in particular stem cell research, I have been increasingly preoccupied with the dilemma of what I would choose were I faced with the possibility of loosing my blindness. While this has never really seemed like something I needed to consider seriously, it is a question which plays around in the back of my mind. Although I am not quite sure why?
During a casual conversation earlier this year a sighted friend asked if I would like to have full sight, and added.
“it would be great wouldn’t it?”
I think on one level this comment was well-intentioned. But what is it they say about the road to somewhere or other being paved with good intentions? Maybe deep down may be I was just a tiny bit offended? For who would it be great? It’s not like saying of a corpse.
“I wish you were still alive, it would be great wouldn’t it?”. I am very much alive. Doing ok I guess. Hefty mortgage, job, few friends, overseas half a dozen times in the past year, clean bathroom, average health, independence, enough confidence to get me into trouble, etc. Sure, there are far too few books in accessible formats, a lot of people still think if you are a blynk you are also deaf and hard of thinking, no current girlfriend (but that’s prob more to do with general relationship phobia than not being able to see much beyond the end of my nose). I’ve not got too much to complain about really and in my little mind, yeah I know it’s amazing anyone can live in anything so small, I would like to think that under the circumstances, most of which I won’t go into, I’m reasonably well-adjusted? Ah well that’s for others to judge and I guess time will tell.
Last week I started to read Crashing Through, a biography of Michael May. For people outside the assistive tech bubble, Mike is an expert on blindness GPS solutions who was offered sight restoration treatment during the late nineties. I have not finished the book yet but have been fascinated by the factors Mike, an entrepreneur working on a new venture with a young family at the time, is forced to considers when attempting to seriously evaluate the implications of taking such a step.
The story in the Guardian certainly contains more questions than answers. That said, it is well worth a read! The part which grabbed my attention was that results from trials on twelve individuals will be made public in a year!
Suddenly the question of what I would do if offered a choice seems a lot closer than at any point in the past.