Written by Jill Fraser
Mike May lost his sight at the age of three through a freak accident and for 46 years he perceived his life as near perfect and packed it full of remarkable achievements.
He broke world records and won Paralympics gold medals in downhill speed skiing and was a member of the CIA before becoming a successful inventor, entrepreneur and happily married family man.
Defying expectations, May crashed through barriers and limitations and became a role model for the visually impaired.
It wasn´t surprising therefore that he hesitated when unexpectedly presented with the opportunity to undergo a cutting edge medical procedure that could potentially restore his sight.
Revolutionary stem cell transplant surgery could, he was told, enable him to drive, read and see his children´s faces. But the reality was that of the less than 20 cases that had preceded him none could be classified fully successful in terms of enhancing the lives of those who had undergone the procedure or meeting their expectations.
Apart from this sobering news May had concerns about crossing this unknown frontier. What if regaining one sense diminished others? What if music sounded different and sex lost its magic? What if his identity changed? What if his marriage didn´t survive?
The procedure was littered with risks and prospective side effects, many horrific and some life threatening, as the experiences of the 20 candidates who had preceded him revealed.
There were countless reasons for May to decline the life-changing offer of surgery and only one that he could think of to accept.
"The main reason I went ahead with it was curiosity and the realization that if I didn´t do it I would always wonder what if," he told thinkbig.
May´s biographer, New York Times best selling author Robert Kurson, maintains that this statement downplays the courage that it took to say yes.
Kurson refers to May´s decision and ensuing odyssey as "daring to live every moment to the fullest".
"My relationship with Mike has been an on-going reminder to keep pushing, take chances, be willing to fall down and get hurt – literally and figuratively – while remembering that the life worth living is one in which you inhale the deepest, try everything and be willing to fail," says Kurson.
It was 1999 when May had a chance encounter with an ophthalmologist who spoke the fateful words "I think we can make you see".
What transpired was months of indecision followed by many more months of operations, fear, rejection, elation, confusion, excruciating pain, disappointment and, yes, ultimately vision – of sorts.
"I don´t see the same as a fully sighted person," says May. "I see in my own strange hybrid way because, as I learnt from vision scientists, vision is very complicated and the brain processes in what is called pathways.
"The cell transplant worked and my eyeball is very good. In fact if my visual cortex was processing the information properly I could drive a car.
"The problem is that I lost my sight at age three, which means that the development of my visual cortex, which is fully developed at around six, was interrupted."
In short this means that May´s brain isn´t wired for normal vision. Therefore despite the success of the procedures on his eyes he will never see fluently and therefore will always be trapped in an in between world of neither the sighted nor the blind.
"The world to Mike looks like a modern abstract painting full of colourful but meaningless flat shapes," says Kurson. "Understanding this new vision is very difficult and learning how to work with it is very hard and after a lifetime of blindness and the anticipation of full sight this is incredibly challenging and led to severe depression in many of his predecessors."
May had spent his life breaking down barriers but he confesses that initially his experience with this new vision caused him to feel that he had reached a point which was beyond his control.
He was numb. The avalanche of skewed visual impressions that were assaulting his eyes was debilitating and confusing and, as with his predecessors, he too sank into depression, but not for long.
Determined that he wasn´t going to be defeated, he began working out how to interpret the colours and shapes that bombarded his eyes by forcing his vision to play a supporting role and allowing his highly developed other senses to once again come to the fore.
May admits that it´s easy to see how his predecessors suffered often devastating psychological trauma. "Everyone of them suffered profoundly for their courage and willingness to dare to see," says Kurson.
"There was case after case of deep depression, suicidal thoughts, clawing at their eyes and fury at their surgeons." May on the other hand, who possesses a sports mindset and was accustomed to pushing through mental, emotional and physical blocks, slowly picked himself up and started looking for a solution.
"My ‘m o´ is I am going to make this happen, I am going to do it even though it´s painful," he says. "There´s no doubt that in the beginning it was overwhelming and that my vision was nothing like I thought it would be. I mean, I couldn´t recognise faces and I couldn´t read.
"But gradually my normal way of dealing with life clicked in. If you get knocked down there´s no point in lying on the ground thinking ‘oh, I am miserable, why did I get knocked over´? You need to jump back up and move on. "In hindsight I believe that those periods of depression and frustration were necessary to cause me to bounce back up and in the end be successful."
Kurson notes that in almost every case May´s predecessors had lived their lives hoping that one day they would be able to see and that consequently their whole world would change and everything would be better. Conversely May believed that his life was so full and rich that vision could not possibly improve it.
"I think the difference is that I didn´t do it to see. I did it to see what seeing was," muses May.
Kurson believes that May´s resilience is due in part to his upbringing and a mother who raised him to be independent, refusing to coddle or protect him simply because he was blind.
"From a very young age it was instilled in Mike to be curious about everything and to try everything and go everywhere," says Kurson. "So when he was offered this chance to do something that fewer people than had gone to the moon had done; to see for the first time after a lifetime of blindness; he couldn´t say no to such a rare chance for an adventure even though there were all kinds of good, practical reasons not to do it."
Where is May today? "When people say ‘can you see´ I say well, kind of, sort of. I have to give them a whole speech because there is not a one or five word thing that describes what I do now so I kind of miss the simplicity that I had," he confesses.
"The experience has definitely been life enriching. But if I hadn´t gone ahead with it I know that my life would be equally rich," he chuckles.
