Bionic Retina - updates from Robin in reverse chronological order
Bionic post script post script
You know when you live in another country for a while you do become a slightly different variant of your domestic self. Diferent parts of your makeup take centre stage. In Paris I feel entirely creative and cool. I have no business hat to wear. All meetings are conducted over lunch with wine. I fall in love easily and I find almost all French women of any age alluring. I eat almost entirely vegetables, which is an affectation definitely. I wear more offbeat clothes, I even ask for my hair to be cut differently. I am definitely more sexy there.
On the downside my lovemaking to French women is clearly appalling, awkward and lacking the appropriate amount of romantic bullshit – sorry, overture. You can’t just stand there and say ‘wow, you’re great, why don’t we shag?’ you have to have mentioned eyes like a thousand stars, you have to have bought at least fifty quid’s worth of flowers / chocolates, taken them for 3 or more meals and then said that you actually have fallen in love with them and intend to love them and them alone for a thousand years. My last French girlfriend actually left me for a woman 31 years my senior, which rather put my charm into sharp relief.
In California I am an unreconstructed, anti-establishment hippy. I listen to rock, no soul or R n B, no classical music made before 1955. When I smoked dope it was weed not hash. I seem intellectual, slightly reserved and quite charming to both men and women. I am hit on by a lot of gay fellows and I don’t seem to mind. I’m slightly scruffy but I have a great English smile out there. I find Hispanic women almost completely irresistible.
In New York I am all hustle. I talk louder, I get angry if I wait too long for my food, I think about money all the time, I’ve never met a beautiful woman there. I listen to alternative rock and hip hop exclusively and I disapprove of almost everything in an extremely intolerant way. I spend a fortune on everything but my hair never looks quite right.
What has all this got to do with my bionic implant I hear you say? That’s because I’m in London where I live in a constant fantasy world of my own making, morning to night. I talk to myself incessantly, I give absolutely everyone and everything nicknames, my whole life is an episode of South Park meets Family Guy meets Spitting image meets Eddie Izzard. So I hear you say something or other almost all the time.
Where was i? Ah yes … the 18 months I spent living half at Kings College Hospital with the research team and the other half in Clapham, with a foreign body trying to fight it’s way out of me, was definitely living in another land … another world entirely! I’m now taking a detailed look back at that period. I gave up smoking, I started drinking more, I put on a lot of weight then lost it again. food tasted different. Men seemed suddenly feeble and women seemed strong and important. Sleep was almost impossible. I was in somewhere between pain and discomfort for a year and a half and I didn’t sleep through the night once. I found out who my friends were, and who they weren’t and that came as a shock because it was a completely different list from the one I’d have made the year before.
My imagination ran completely out of control. Completely. I became a technicolour deviant in my mind. 30 years of visual silence came crashing into life as an overwhelming tsunami of visual images. My visual cortex and that part of the brain that deals with sight was overwhelmed. It was amazing, unmissable, deeply moving. I had a tremendous desire to buy beautiful women’s dresses and wear them again like I used to on stage. I bought really peculiar sex aids which I still have no idea how to use. I found my voice as a blogger. It was a short time in my life which I shared with everyone. I got every kind of reaction including downright disapproval and rejection. It was incredible how much that hurt me. I felt I’d volunteered for something that not many people would have tried and that the whole point of it was to express what it felt like, to give everyone a new insight into something. Do you know they have never ever restored any sight at all to someone who did not even have light perception for 28 years? That’s not the sort of thing I’d keep to myself, nor therefore is the fact that doing so resulted in erotic overload.
I know the medics and researchers have gained huge valuable knowledge. What I’m convinced about is that they just won’t accept the fact that the tinypiece of useless vision I got for a few weeks had a psychological effect on me so utterly profound that it could be the most important single thing to be derived … that if you give a person back all 5 senses, however fragmentary, you re-attach them to the rest of the world in a way that may be even as crucial as life-saving. The medics and their funders are obsessed with how this work could lead to ‘improved independence’. That means doing things on your own, by the way. well I don’t bloody want to do things on my own. I like people. I like helping them and I like being helped by them. Why the fuck should I have to try and cross the road by myself when there’s someone else who can see, standing 3 feet away? Ridiculous!
Update – V.I.P.
I promised you the last bionic blog was the last bionic blog.
Several things happened.
First, a chorus of ‘no, not the last bionic blog! Go and have something else horrible done to you so you can write about that! it cheers us up so to see you suffer (the germans have a word for that but I can’t spell it).’
Second, the dreams came back! Haha that made some of you jump. But this is going out to the long list including those who have no go areas regarding my third eye and what it conjures up … unexpurgated versions available on request!
But by far the most important reason for writing again is that, having come out the other end bruised but full of joy, I’ve had the time and space to reflect on something very very important.
This was not a journey I went on alone. I’m not at all sure it is a journey I could have gone on alone. It is a journey that I put to Shelley as an idea. A possibility. ‘if I do it I will need your support’.
That sounds like I don’t get her support usually. Nothing could be further from the truth. Shelley has supported me through crisis after crisis. Health scare after personal tribulation. She has done so much more than pick up the pieces. She’s been my rock.
Those of you who have known us for a while will know that we are usually spotted together, like rare mating birds. We like it that way of course, but more than that she likes me where she can save my arse from going too far, getting in a fix I can’t get out of or even just bathing the cuts and bruises when it all goes pear-shaped.
The odd thing about this is that she has always been my dream woman. Very much a precious jewel of exotic tantalising beauty and wonder. How she also became my best friend is a source of amazement to me.
It’s as my best friend that she said ‘yes, if you want to do this, I’ll be there’. She didn’t say that straight away. she thought about it. She said ‘I need to think about the fact that I’ll need to be there if it all goes wrong’.
And of course it went wrong.
And she was there. She never complained. She came to endless endless hospital tests – the ones that worked and then the many that only proved the implant had failed. She came to Germany with me to double check that it had failed. She went through the whole crazy, turbulent, tiring business by my side. With me as a friend. never judging what I’d done.
Privately it must have been a bloody challenge and a half. She must have wanted to scream. To hit me on the head. To hit the scientists on the head. But she did none of that. she lived it, breathed it, shared it all with me.
This adventure was Shelley and Robin go on a bionic journey together.
Any thanks or admiration you have expressed so nicely to me please extend to my remarkable, extraordinary friend.
Update – The morning after the night before!
That was a hell of a ride. Here I am still smiling the day after the bionics came out. Really pleased I did it. Really pleased I was first. Thrilled with all the support. Thanks everyone.
The last word in implants!
I’ve only just realised how incredibly patient you have been with me over the past 18 months. It’s really the last 48 hours of Miley Cyrus which has reminded me just how irritating one human being can be to loads of others just by putting their face in their face all the bloody time … ah great, I can go off-message straight away and list all the people I’ve had more than enough of … top, of course, is Will.I.Am – there are no words. Close second is the Kim / Kanye axis of T-Vil. I thought it was possible I’d been abducted and found myself on another planet. I watched Kim and her sisters on their show and now I know I was right. David Cameron-Money-Coutts, Ed Millipede, whoever the f…k that fun-free zone of a culture secretary is, Harry Stiles and his wone-dering willie, that cat on Youtube, Gareth bloody Bale [and this from a diehard Spurs fanatic – just go will you, learn the lingo, get a tan and let’s move on please], Australian cricketers and their coach behaving like school bullies who’ve been given a detention and are texting mum saying ‘it’s not fair, it was all that horrid Broad’s fault’, women on hen nights taking over my two favourite restaurants every week 30 at a time and making so much racket I have to go outside just to hear my own tinitus, men on stag nights dressed as women [no, I honestly don’t know what that’s all about and don’t want to but they spend a lot of time on trains going to places I need to go], Andy Murray’s mother – who on earth do you think you are? I’m sick and tired of all of them all the time…and I can now include myself and this blinking – well, no longer blinking – implant.
How on earth have you put up with it all?
Great news! This is to be the last ever bionic blog! I hear more cheers than sighs, more discreet punching of the air than shouts of ‘no surely not!’.
First thing was to review what I have written to date ..and your responses.
I had pretty well forgotton how very strange life became for those few weeks last year when they turned on the device and I saw something for the first time in nearly 30 years. Life went into a technicolour hallucinatory sexually overcharged frenzy.
I tried to write about it honestly. It’s definitely not William Burroughs or Aldous Huxley. It’s somewhere between 50 Shades of Grey, Penthouse and an Italian made-for-TV movie script. I got flack from offended women, propositions from people who thought it was a coded come-on – even Libby Purvis from the BBC was lost for words at one point.
And on and on I went! I described to you everything that was happening in graphic tedious detail.
To your combined immense credit you went with it. You formed a terrific loyal band of tenacious supporters and friends willing me on. I felt like Mallory, my great hero, as he approached 100 metres from the summit of Everest. He could taste victory.
Then I realised why I’d chosen Mallory not Hilary. Heroic failure. It’s about having a go and not quite making it but staying good natured through it all. Ok, I didn’t die. Not even close. I did get the oxygen debt style hallucinations, I did experience the profound dismay of a whole team of experts who’d made the journey with me and then found their equipment failed them au moment critique. I wish I could say it was bonding, but actually I felt quite alone for a while.
The emotions came in waves.
Now, a week before they finally remove the device from my head [a bit of a messy business probably] I still find I can be wistful.
But three things rise like a phoenix from the bionic ashes
my blogosphere friends did not leave me to get lonely for long and I’ve experienced the thrill and joy of being a human among people who care about me
I’ve finally proved that my absurdly tough and stoical and obstinately buoyant and optimistic nature seems truly indestructible
I am an astonishingly self-promoting, vain, needing to be loved, needing to be someone who gives strength to others, talkative, crude, politically incorrect, over-passionate, cheeky, demanding and dangerously reckless individual
Thank you very much indeed for accompanying me on the ride and, by and large, tolerating the strange excesses of ups and downs with me. read my lips, I’m fine about what’s occurred. I went in with my eyes open [don’t say it] and I said at the beginning it was my choice and I would be happy with the outcome. I’m happy with the outcome. They won’t put this device into anyone else, in Britain anyway, until they’ve done a lot more work on it.
It worked a bit for a bit, I saw a little block of silver and imagined a technicolor world of epic lust and savage beauty.
I wouldn’t have missed that for anything.
I will never see Miley Cyrus’s tongue. I will never see Kim and Kanye on TV. I will never see wee Georgie Osborne’s little face quiver as he stares into the economy filled with awe, wonder and incomprehension. I will never see the images from Syria. I will never see the Macdonald’s they built in the ancient city centre of Marrakech. I will never see Bradley Wiggin’s sideburns. I will never see myself or my loved ones grow old. I will always see myself as Bob Redford’s slightly more masculine younger brother.
How bad can any of that be really? I ask you.
Fond wishes to all.
Over and out
The Bionic Hokey Cokey…
You put your implant in
Your implant out
In out in out
You shake it all about
You do the hokey cokey and you turn around
That’s what it’s all about.
March 31st 2012 implant of bionic retina in the right eye
April 17 switch on. immediate flashing lights. Visual cortex working perfectly
June 1st implant stops working
July 15 implant pronounced dead
March 12 2013 refused entry at Glasgow airport as I couldn’t go through the scanner
April 1 amazing pain from the eye
April 15 diagnosed rejection of the implant. It’s trying to get out.
April 20 emergency surgery to re-cover the front of the eye
May 15 my decision that I’ve done my bit and time to move on.
September 5 scheduled date for removal of the implant.
Those are the bare bones. From the preparation of my body – giving up smoking, a 3 month regime of exercise and diet – the not inconsiderable discomfort of the original op, the tremendous excitement that the implant proved that the optic nerve after 28 years was ready to work, the fun and stimulation of ‘seeing’ again. The bewilderment of the device conking out altogether. Coming to terms with that. The continuing problems of rejection of the implant, the absurd comedy routines at airports everywhere as I refuse point blank to go through the scanner [this would literally tear my eye out of my head] and the final difficult decision to have it taken away.
They cannot in fact take it all away. tissue i.e. my head, has grown all around the coils of wire, resistors and so on. they can take out the bit in the eye and around the eye but the rest they will just send the plastic surgeon in, open up as much of my face as she dares, and grab what she can. The rest will have to stay there by the look of it.
People are asking me what I feel about all this. The hero in me says it provided hugely valuable information for future work. Real pioneering stuff, even down to showing that the eye did not like this particular foreign body. The Ordinary Joe in me is quite sure it’s taken it’s toll on me and that the decision to remove it is a sort of finality that, in the fullness of time, may be harder to deal with than I think.
The pragmatist in me says ‘hey, I gave up smoking!’
It’s quarter to three. There’s no-one in the place ‘cept you and me. So set ’em up Joe. Let’s have another drink before you go… and if you could add a couple of ibuprofen, a couple of Trammadol and a couple of Codidramol to the cocktail that would be appreciated.
What do you call a man with a piece of metal sticking out of his eye? Answer: Robin.
Here I am back home after emergency surgery on that famous right eye of mine. You know, the one with the bionic retina that conked out after 3 weeks on the job, like George Osborne. I’ve got so sick of Thatcher Radio that I’ve decided to share the moment with you.
My body has decided that it doesn’t like the implant any more. So like a splinter or a bit of grit under the skin, the body is doing a pretty good job of trying to shove it out via the front of my eyeball. As you can probably imagine, this occurrence did not pass unnoticed by me. even Spurs coming back to snatch a draw from Everton rather paled into the background compared with the feeling of being stabbed continually in the eyeball by an Arsenal fan with a pair of scissors (nicked of course, you’re all criminals).
If you don’t want the gory details turn away now.
I went to the clinic. They took one look at my eye and told me they could clearly see part of the implant protruding through the front of the eye and that ‘this would explain the discomfort’ discomfort eh. So that’s what it’s called is it. Glad I know. I thought f…ing horrendous excruciating agony was the proper phrase but apparently it’s discomfort. Glad to know that.
So a piece of a dead person’s eye was rushed to Kings College Hospital; rehydrated and sterilised and used as replacement for the front of my eye to cover up the fiendish little metal object making its bid for freedom. Gotcha!
‘This is great’ I hear you cry! ‘Thanks mate, a really choice story to wake up to over the boiled egg!’ Sorry about that but you did ask to stay on the list – er, I hope….
The interesting part is, of course, that since almost no-one has ever had this done, the crew have no idea what will happen next. Will the eye carry on trying to get rid of the bionic? Will it settle down? will it / has it get / got contaminated? All this is, of course, exactly why I signed up to this programme. A few months ago I pointed out in this blog that the reason I wasn’t having the dud bionic removed was to continue to guinea pig for long term tolerance of the foreign body. And as the surgeon, the truly terrific Tim Jackson, says ‘they found out more valuable info from the early heart transplants that failed than by the successes’.
Onwards and upwards.
There will now be a short intermission.
I was beginning to think “maybe Germans don’t do empathy?”. I reminded myself that racial stereotyping is morally repugnant and politically disastrous. Then I remembered a study I read a month ago about suicide in young British men and how the highest rate geographically correlates with UK towns where Rugby League is played! “Stop snivelling lad, you’re a man remember?”
I also reminded myself that Germans are to be seen abroad in vast numbers….where? not in the dour Scandinavian North, not even in the reserved stiff-upper-lip England….but in the passionate emotionally liberated lands of Italy, Ireland and Latin America.
So I decided that Germans have all the same potential for empathy, compassion and passion as anyone else – it’s in their nature but not in their nurture.
I had decided to decide this [if you see what I mean] i.e. get the attitude straight – before I went to Stuttgart on Monday. Stuttgart is where the Bionic retina is engineered and designed. The team out there are the technical backup to the medics in London.
I hadn’t heard a dicky bird from them since the implant stopped working, other than a two line email suggesting I tried another power supply. Which I did. That didn’t work either.
I heard they were planning more ops and I got cross….really quite cross. Certainly tinged with frustration and disappointment my end that quite an arduous and time consuming process had such a short shelf-life.
So Germans just don’t give a scheisse when things go wrong eh? Right then! I threw a couple of small toys out of my pram and Hey Presto “Come to Germany please”
I think I’ll fast forward through some of this….you really don’t need to know how many tests and retests they made, how the whole operation works or what I had for dinner [although I can relate that if you don’t eat meat menus in this particular foreign language become blissfully simple. There’s nothing to eat other than Black Forest Gateaux…shame!]
I have really met some very very nice Germans lately. One in particular is smashing. They were all very kind, very understanding, actually very upset for me and for them that the bionic failed. It seems at least two wires in my head have broken. There’s a complete re-design under way already. No more gold…apparently stainless steel is now the go.
I have been offered a replacement imploant when version 2 is up and running, probably back end of 2013.
Do i want it? Now there’s a question indeed. Would I have even gone through it the first time if I’d really known what it would have been like? Hmm…if you get mugged do you go back to the same spot the following evening? I rather wonder.
However knowing me I can safely say that when the time comes I will be up for it, ready to rock and looking forward to the whole thing.
Meanwhile I have to do my best to help them. continue the regular monitoring of my eye to check the implant hasn’t moved, check the eye is still healthy, check for rejection and so on. they need this info. What I’m not going to do is have this one removed before a new one is put in. for the reasons above but also because exchanging units the same day is one operation less and probably less scarring also.
So there we are. Thanks for sharing the journey so far – it’s been hugely helpful strong and rewarding to have your support…you may well hear from me again.
Oh and by the way I intend to continue my obsessive health routine between now and then so if you are up for a good 40 minute very brisk walk anytime then get in touch.
Au revoir from the not-so-bionic man.
The Yin and the Yang – Now you see it, now you don’t.
I could write a long and exhaustive account of the last two weeks and of how it has affected me and the UK medical team but it’s not the right moment for all that.
What I do need to do is manage everyone’s expectations by telling you that the bionic retina stopped working two weeks ago.
We have exhausted all the possibilities of an external problem with the power supply or of a simple break in the wire. The implant is there; the wiring is intact; the new power supply is in place…but there is no longer any reaction to light whatever.
Obviously the team will look hard and think hard about next steps but in short, unless it’s like an old TV and responds to a good kick in the head then my part in this particular adventureis over.
Of course it’s a shame. I was starting to enjoy myself at last! However let’s bear in mind that we proved it did and does work as a concept so that is the breakthrough that was needed.
Onwars and upwards for the rest of the team and hopefully build in more reliability as they proceed.
So my life now resumes as before apart from some extra internal wiring… of course I hope some strange fluke miracle or genious will intervene and sort this out but I’m not giving up my day job!
Thanks for all your support.
It seems like a long three weeks since the surgery – and almost another lifetime ago. I am really really pleased a) that my friends and family helped me get fit – I’ve shrugged off the long anaesthetic and surgery very well and b) that I was prepared philosophically.
In a nutshell I’ve spent pretty well every day hooked up with my head in a noose and the machine switched on at the hospital. It works. By that I mean that when light shines in my eye I see shiny dotted lines and rectangles. That in itself is fascinating and of course means that the theory holds water. Light shining on the bionic retina stimulates the diodes which send electrical impulses through the neural network at the back of the eye. These are picked up by the optic nerve and carried to the brain which interprets this as ‘sight’.
What it also does is confirm my previously held view that this device will not provide me personally with anything I can use – and I must say after the year’s test programme is over I suspect I shall be extremely happy to turn it off and leave it off.
But in terms of what this might mean as they move forward with research I think it’s incredibly promising for next generations so I’m happy to be doing my bit.
It’s been really pretty uncomfortable so far and the areas where the wires have been threaded through are still pretty sore…but all in all I’m in really good shape.
I’m now settling myself for a year of endless testing and retesting to get as much good science out of this as we possibly can. One positive byproduct of the brain stimulation is that for the first two days of the switch on I dreamed in very vivid colour for the first time in 25 years…so a part of my brain which had gone to sleep has woken up. I have really enjoyed that.
Blind vision – an explanation of what I ‘see’ with the implant
I am not intending to bombard people with daily or even weekly blow by blow accounts of this little adventure but I’m impelled to issue a kind of briefing statement.
Impelled by a surprisingly large number of charming and loving emails from good people wondering to what significant extent my own eyesight has been restored. “Can you identify bits of furniture yet?” “Can you see shapes and tell one person from another yet?” “Can you use the implant to see your way around in the street?” and others.
The first thing to say is it’s lovely people care so much. I have become so matter of fact about my life that realising how many people desperately want me to be restored to full sensory fitness is incredibly touching. Thank you.
I am going to try to put you in the picture and it’s not easy. Before the surgery and for the last 25 years or so I have not been able to see anything at all in front of me. that last bit is important. It’s not like having a bag over my head. It’s not black. It’s colourless. It’s something absent not present.
But that is half the story. In the background or foreground, depending on fatigue, mood, position, glare [which I perceive as pain although don’t see] I have dancing iridescent grey-white lights shimmering oeverywhere. These are called phosphenes. Occasionally they are bright crescents of light passing around as though suspended. When the activity is strong it’s hard to get to sleep and hard to concentrate, hence my lifelong obsession with meditation.
Since the surgery and the implant…with the power supply detached i.e. most of the time, nothing has changed more or less [see later]. With the implant switched on nothing has changed…unless that is I face a window, a light bulb or a computer screen with a strong contrasting image. At that point my tiny chip – 1.5mm x 1.5mm – produces a tiny pulse of light. About the size of a matchbox seen from across a large room. The light is rectangular, silvery grey, oscillating at 5 hertz i.e. switching on and off 5 times per second. The reason for the oscillation is that the image needs to refresh itself constantly or the bits of my eye that still work will run out of energy.
The direction of this tiny beacon roughly corresponds to the light source. So of course light from a window is many dozens of times larger than the field of the chip so if I scan back and forth up and down the pulsing will continue. Whether this means a window, a dozen light bulbs or candles, an aray of tv screens would be impossible to fathom.
And of course anything that is not emitting light is absent.
In a controlled condition of a blacked out room with one strong narrow beam light focused on a matt black table cloth, I can locate a white dinner plate in about 20 seconds. I would not know if it were a dinner plate, a small white lizard or a pile of vomit from someone who has eaten too much chalk…but importantly the smell rather than the look would give it away.
So because of the advance of all my other senses and my expertise in using them, this tiny light source on a scale of 1 to 100 is about a 0.2 on the usefulness richter scale. I wouldn’t give up so much as a little finger for it.
Annoyingly of course the phosphenes continue. In fact even more annoyingly since the surgery they have increased several fold with the implant unplugged and get even stronger when turned on, so I’m trying to locate a small dull silver speck of light among a curtain of shimmering iridescence. Interestingly whenunplugged, I get one very verystrong single pulse of shiny silver every few minutes as though my brain is reminding me that it has seen something for the first time and it wants more.
Downsides I’ve already recounted. Upsides are numerous. Potential for future development massive; proof of concept amazing; an increased sense of focus and belonging to the world undeniable; dreams fascinating; indication of others’ love and care about me humbling – and I don’t use that word lightly as you all know!!!!
As the texter would say… HTH
Eat your heart out Boris Karloff.
First there was Dr Frankenstein who decided he might optimise the performance of a human by using a superior kit of cadaver parts and injecting some electromagnetism. Then came NASA and the 6 Million Dollar Man Steve Austin who was bionically enhanced to deliver super powers. Bionics is the use of electronic gadgets to mimic or enhance performance in parts of the body.Both these were fantasy but bionics is real enough. Cochlear implants have given intelligibility to the profoundly deaf; pacemakers have controlled erratic hearts with great effect and even the humble wheelchair is a sort of bionic walking machine.
One week ago as a lot of you will know, I underwent a 12 hour surgical procedure to implant a bionic retina into my right eye. This was version 1 of a pioneering experiment with a team of 12 medics including eye doctors, plastic surgeons, ear nose and throat people and the rest. I’ve had a huge amount of goodwill and good wishes sent my way which is something to treasure. I’ve always been bad at letting others care about me, preferring to over-compensate the other way so the real and spiritual help I’ve been given is magical. With apologies to those of you who may have been pestered by the media about this, particularly the more famous among you, all I can say is I’ve probably been pestered a lot more about you lot over the years and I’ve always been nice [well apart from with Shirley Bassey].
Let me tell you what’s going on now. Seated just below my damaged retina directly over the optic nerve, the bionic retina is an array of light sensitive diodes attached to a wire. The wire passes out of the eye, through the skull, out below the eyebrow then along the temple, over and behind the right ear and finishes with a small plate on the bone behind the ear. Simple!
For the next few weeks all that will happen to me is a constant series of tests to check eye pressure, healing, lack of rejection, pain management and a general bedding in of the new look new feel bionics.Once they are happy [definitely weeks away yet] they will attach a power pack and plug me in. What happens then is the subject of speculation and the object of the exercise.
It is perfectly possible that nothing will happen at all. In other words I shall move my eye in the direction of, say, a light source or a clearly visible object on a dark background and I will see and experience nothing at all. There will be a number of possible reasons for this: my retina might be too opaque to let the light through; the connection from the little bionic to the optic nerve may not be working in a way that my brain can understand or may not be working at all. My brain [no funny remarks here please!] may already be too atrophied after years of total blindness to understand what light is any more – one of the many amazing things I learned over the course of this little adventure is just how many people who lose their sight also lose all their visual memory, often in quite a short time. It’s as if they had never seen anything. To me I am not like this…i can remember a red pillar box, the original Mini Cooper in Green and White, Stephanie Powers’ bottom [but that’s another story] in great detail. The hope is that this is something which may help my brain make sense of what is happening.
The best case scenario imaginable is that after a series of tests the device will work, my brain will start to decipher what is happening and a series of black and white images including movement will appear before me in a way which I could use.How much detail, range, field, accuracy? No one has any idea.
How long will the device keep working? No one has any idea? The hope is that it lasts at least one year giving the scientists time to drive me bonkers with dozens of experiments and hundreds of hours of research and that the feedback will help to make some real decisions about next steps. At some point the equipment will break down in some way but hopefully we’ll find out why and where it happened.
How do I feel about all this? Right now I feel like I told six sailors in Marseilles armed with crowbars that they were a bunch of cissies and they took it really badly. As to the rest… I’m thrilled to be in the middle of a real adventure. I’m very confident that given another twenty years this area of research will make genuine breakthroughs in giving useful versions of sight to the blind. I don’t mind being blind at all personally, but I do mind the plight of blind folks young and old in poor countries who are victimised, excluded, abandoned and often killed rather than be a burden on a family. I also have young relatives coming up through the ranks and although I’m happy now I’d still rather think that they had a future to look forward to in a different way.
The only famous person who attended my North London State School was Boris Karloff…so in a way I feel like I’ve come of age as Frankenstein’s monster after all these years. Like the monster this particular Version 1.0 may not turn out so great…but from Frankenstein we see a timeline to Dr Christian Barnard and the first successful heart transplant so let’s look forward.