You suffer from a degenerative eye disorder called Keracatonus. How long have you had it and how did it impact your sight?
It feels like I’ve had it just a few years, but I think it’s actually been at least 10 years now. Les Mis has just come out at the cinema and I’m a big film fan so I wanted to see it, but at the same time I wouldn’t be able to due to the glare of the screen, especially in the last week or two having had the eye surgery. Then I realised that Les Mis is a musical and you can just hear it rather than watch it. I suddenly remembered the last musical I’d seen in the cinema was Evita back in 1996. Even then my eye was going bad as I couldn’t see through a lot of the film. My condition affects mostly young people. If you haven’t had it by the time you’re 35 you’re probably not going to get it. Normally it's one eye and not both, or at least one eye gets it worse than the other. I’m told I have a mild version in my other eye but it’s so mild you can hardly tell it’s there. One eye tends to carry you, so for the last 10 years my right eye has been great but my left eye has been getting gradually blurrier. To start off with I could manage with a hard contact lens as it pushed the cornea back and kept it focused. After a while though they said the cornea would begin to push back and sure enough, after a few years, I couldn’t get a contact lens in any more.
Since then, for the last four or five years, I’ve just been wearing glasses but my left eye has been doing very little. I really could have been wearing a monocle. Unfortunately they’re not fashionable, so I wear glasses.
Has it impacted your writing at all?
Mostly my eyes got used to the right eye doing all the work, so it was ok for most of the day. I’d forget about it and tolerate it and maybe close the left eye in bright sunlight or wear sunglasses. Headaches really made an impact, particularly if I was doing a full day of writing on a computer screen. I could mostly expect a headache at the end of the day just because the left eye is looking at this glare and not really making sense of it at all. It’s fine when looking at a view, looking out the window or even driving I suppose, but it’s when you’re looking at text all day long, then it’s tricky. After so many headaches I eventually said to the doctors ‘Lets do this!’
Did you have to wait for the cornea transplant?
No. I think there are a surprising amount of corneas around only because there are twice as many of them as hearts and livers and so on, and also very few people end up dying from something cornea or eye related. There are not many blood vessels that go to the eye, so it means there’s not too great a risk of rejection. They also last a little longer and are easier to deal with I think than some of the bigger organs.
What was it like going to the hospital for a new eye?
Surreal I think it’s fair to say. I was fine about it until the afternoon before. I’ve got a toddler and work, so I just kept busy and had it in the diary. I was in a soft play centre with my toddler and had to go in with him, suddenly I just felt a bit trapped. I couldn’t get out because I was too big for it. The way he was going was fine, but I was this giant and was so claustrophobic. I suddenly had this image of being fixed there in the hospital with this laser and the surgery happening and I thought ‘oh yikes, this is going to happen’. I was there waiting first thing in the morning. They had to borrow the laser machine from the private hospital next door to the NHS hospital, so I had to walk over clutching a box marked ‘human tissue’, giant box, absolutely huge, with one tiny cornea, which was amazing. That was surreal. You’re practically clutching it all day. If something gets separated or called off or, I don’t know an earthquake or something happens, I need that cornea because I haven’t got one and I need that one. They said ‘Keep it with you at all times, you and that box cannot separate’. The first part was done under local anaesthetic so I was awake for that, and then the stitching part was done under general anaesthetic. I came round with a patch on my eye, I had it for a day then took it off just to see how it all looked.
It’s got better each day but I didn’t quite realise how big it would be at the time and that I’d have to spend a week in a dark room, but you take a lot of audio books and you get through it. The doctors have been absolutely brilliant, first class, in a way that has gone above and beyond. I’ve had phone calls from them, texts and emails, even on evenings and weekends to check how I’m doing without me even asking. It’s like having private health on the NHS. The main consultant has been to my comedy club and we’ve got a bit of a rapport going as well. He wants it to go well for me because he doesn’t want me to take the mick out of him at a future comedy night and I want it to go well because I want a nice eye, so we’ve got a mutual trust going on.
How does it make you feel that someone else chose to donate their cornea?
It’s fantastic. I mean I’m in awe really, absolutely in awe. I don’t know anything about the cornea donor. I don’t know the age or the gender, I don’t know if I’m meant to know or I’d like to know. Part of me thinks I would, part of me thinks maybe it's best not to know these things. But I do know that someone has done it and that this is from someone else. That thought keeps coming back to me. It’s quite incredible really. I signed up to the donor registers, which is something you can do now, but of course it’s a gift you can’t give until the end of your life. It’s almost like you’re placing something in the bank that’s there for the future because I want to give something back. Not now though because I need corneas and others things.
You could give a kidney now but apart from that everything else you’ve got to hang on to. It’s good to know that someone has done this for me, so in the future I can do something for someone else. It’s quite incredible really. I read the other day that up to 9 people can benefit from one organ donor.
What kind of impact will your cornea transplant have on you and your family?
Well hopefully a lot once it takes up its permanent position. It can take up to about 6 months but the pain has now gone which is good. I can pretty much function fine, things are still bright, but it is already better than it used to be and if I squint I can make out things that I couldn’t see before, so already it’s an improvement. I’m hoping it will give me some vision really. We’ve got a toddler now and another one on the way. I remember about 3 years ago, whilst we were pregnant with our first, I thought it would be good to try and get my eye sorted by the time the baby was born, thinking it would be great to be able to see him with two eyes rather than one blurry one. I thought how great would it be to see your own child in as crystal clear vision as possible. People buy HD TV and basically my eyes are like watching something on VHS back in the 80’s. I went to the doctors at the time and they said they didn’t think my eyes were quite ready for it. I got through the last 2 and a half years with my left eye not seeing properly and my right eye making up the difference. I just think, how great will it be when my second child is due in April?
Maybe by then it may make more of a difference, certainly all being well, by the summer I should pretty much have spot on vision. It will be fantastic! I’m fully expecting that it may not be perfect and I may still be a bit blurry, but it’s still going to be an improvement and that’s going to be incredible. The fact that I can get through days without the headaches is going to be great.
You’ve frequented many churches whilst touring your stand-up, what if each of them saw blood and organ donation as an extension of their giving?
I think it would make a fantastic difference. The churches I’ve been to, whether doing stand-up or staying away doing stand-up gigs and just turning up to go on the Sunday morning, they’re fuller than the press would have you think. These places have bums on seats, I mean, there is a big community there. If everyone who’s not on the register signed up to it, that’s a lot of people. If you think that up to 9 people can benefit, and that’s just the people who are of course getting something transplanted whether it’s a cornea or pancreas or whatever, but the families surrounding them is more people. That’s up to 40 or 50 people who will find their lives improved for the better because of one person and what they have done.
What’s the best gift you’ve ever received and does a new eye trump it?
An eye trumpet?…an eye trumpet would be fantastic as a gift!
The non-flippant answer would of course be my lovely child, that aside, I don’t know. It’s probably going to be something sad like my radio times subscription that my mum gets me every year for Christmas. I love it but I’d never buy it myself, instead I just hang around in supermarkets reading it until the security guards tell me to leave. It’s probably that because without it I’d undoubtedly get in a lot of trouble.
How is your recovery going?
The cornea is a pretty straightforward transplant and I’ve only got eye drops that I take 4 times a day for maybe up to a year. It’s been a very tough week or two though, and it has been difficult, too long in a dark room and you kind of end up like one of Stephen King’s characters. It all went a bit crazy, but thankfully I’m out of there now. I hate to think what others go through who have different organ transplants. It must be incredibly tough for them as well.
I know a guy whose just had a liver transplant fairly recently and he’s been back and forth to the hospital. They called him in the middle of the night to say a liver was available, he drove across the country for several hours, and then at the last minute they said the liver’s got some damage to it so we can’t give this to you. He went home, then months later he was back up again. It’s a long and torturous process and very difficult. If I didn’t get a cornea my left eye wouldn’t be able to see much. It’s not life threatening but for a lot of people it is. It’s a tough procedure, and then of course there is the recovery time, but at the end of it all they know that they’ve got a chance to live, a chance to have a better life, a chance to improve how they can operate in this world. So that’s what gets people through it. And all because someone signed a form and told their family their wishes.
Paul Kerensa is a stand-up comedian and comedy writer for TV & Radio, including 'Miranda', 'Dead Ringers', 'Not Going Out', 'After You've Gone' and numerous others.