Darek Fidyka

The most important thing is to be a Human Being and you never quite achieve it.

Darek Fidyka

Curing Paralysis

An Interview with Geoff Raisman

Professor Geoff Raisman and his team recently pioneered a revolutionary cure for paralysis. Their patient was Darek Fidyka, paralysed from the chest down following a knife attack where he was stabbed 18 times. Following treatment, Darek is now able to walk with the assistance of a frame. The pioneering cell transplantation treatment has been developed over the past 18 years by Professor Raisman and his team at UCL, and applied by surgeons at Wroclaw University Hospital, Poland.
Using specialist cells from the nose called OECs (olfactory ensheathing cells), the treatment involves implanting these cells in the spinal cord. The nerve cells that continuously grow back when damaged in order to keep giving our sense of smell were used to grow back the damaged nerve endings in Darek's spinal chord - a procedure previously thought impossible.
Darek Fidyka, paralysed after suffering stab wounds to the back in 2010, had an 8mm gap in his spinal cord. He described the ability to walk again using a frame as "an incredible feeling," and added: "when you can't feel almost half your body, you are helpless, but when it starts coming back it's as if you were born again."
 Dr Pawel Tabakow, consultant neurosurgeon at Wroclaw University Hospital who led the Polish research team said: "It's amazing to see how regeneration of the spinal cord, something that was thought impossible for many years, is becoming a reality."
Professor Raisman first discovered OECs in 1985 and successfully showed that they could be used to treat spinal injuries in rats in 1997. He joined UCL in 2004 and has spent the past decade developing OEC spinal repair techniques for patients. Now, after decades of hard work, his research has helped a paralysed man to walk again. We sat down with him on January 23rd to hear his incredible story.

So I read that you got your drive to succeed from growing up in a working class Jewish family. However, from the research I have done there doesn’t appear to be a history of medicine in your family. Where did that original interest came from?

Yes that’s correct. Of my many uncles I had one who was a GP but I had very little contact with him. I had a deep interest in nature and living things and I never really made a decision to pursue this line of work. My father made the decision and I did what he said, albeit in medical research rather than becoming a doctor.

Okay and looking at the work you have done would it be fair to say you have had to sacrifice a lot to make the progress you’ve made? Things like friendships and other interests?

No, no, no. I would never sacrifice friendships for anything – I have made an enormous number of friends, more than anyone I know, and that’s the way it should be.

It was around 30 years between you first identifying the impact of OEC’s from the nose and transferring them to the spinal cord and then the recent incredible break through with Darek Fidyka. How do you keep motivated over those 30 years when progress is slow?

 Yes I suppose it is about 30 years. I don’t really keep motivated. I just do what I want to do. I don’t give it a lot of thought. I just go ahead and do it.

The recent breakthrough you’ve had – in simple terms just how big is that?

If we can confirm it [in more than one patient] it is of absolute historic proportions. I would say it’s more historic than putting a man on the moon. It’s history. It’s a piece of history.

“I would say it’s more historic than putting a man on the moon. It’s history. It’s a piece of history.”

So providing it can be confirmed do you think that paralysis can be reversible at scale?

Yes. Are there the facilities and the want in the world for us to prove that? I don’t know. I think it is certainly fair to think that it is achievable but whether we can do it or not is an entirely different question.

Why wouldn’t there be the will to do it?

If the world doesn’t have the will to keep children alive in war torn countries, if the world doesn’t have the will to get children out of poverty in half of the world then do you think it’s got the will to get people out of wheelchairs? You are just thinking of the way things are in the UK or the USA. There’s a big world we are in and things aren’t as simple as you may imagine.

That may be true, but it’s a sad indictment to think that because the world turns a blind eye, or doesn’t help certain individuals in distress, that the people who inhabit it won’t pursue your medical advancements with everything they have. There are millions of people in the world who are paralysed and, maybe naively, I would hope the will would be there.

As you say I think that is naive. When you have children dying and nothing is being done about it, then why should people care about this?

People do care about children, and I think they do try and do something about it – just not as quickly and as aggressively as we would all like.

Maybe. We will see. I would hope there is the will for it to happen but if it happens in my lifetime I would be surprised 

So moving on to Darek, how is he now do you know?

He is very slowly progressing. It’s obviously a long process but he is able to walk and he is progressing – I haven’t seen him in a couple of months however.

I read that the trial is expanding and that you will be working with around 10 more patients. Has that work begun, and if so how is it going?

That’s what we hope to do. It hasn’t begun yet – it takes an enormous amount of preparation to get onto the next patient.

And does that frustrate you?

Yes that does. I would love to see it happen now. If I could make it happen now I would.

So why can’t it happen now? Is it money?

It’s everything. Funds, permissions, the right patient. It’s not something you snap your fingers and do. We’re talking about people here, real lives.

Sure. So over the course of your career have you been tempted to give up?

Oh I suppose. Very, very rarely and only for a very short time. I’ve not given it any serious thought. Yes things can be frustrating but you just have to get on with it you know?

Yes but I think the frustration with the politics, and the time delays, would begin to drive me mad.

You’d get used to it.

My friend is a teacher, and he wanted me to ask –  what can he do to help his students achieve big things? What’s something your teachers did for you while you were in school that helped to encourage your ideas and thinking?

I have been very lucky and had the most marvellous teachers. Not only in school but within my family. It’s the excitement you feel that they detect. If you don’t have it then you can’t give it. The best teachers are those that have that love of the subject resonating from them. The best teachers are those that teach with passion. I’d hope that I inspire my students as well.

That’s very true. Looking back, certainly my best teachers were those that loved what they were teaching. You touched upon it there – you’ve inspired a lot of people. Who inspires you? Or what inspires you?

Oh an enormous amount. But not just in science. I’m inspired by music, poetry, writing, art, architecture, and many cultures.

And do you get an opportunity to pursue these interests?

Oh yes, all the time.

As much as you’d like to, given the amount of time you must spend doing academic research?

Well your mind can work on many things at one time like a computer. There are so many things I’d like to be involved in. The world is full of things to do and any amount of lifetimes wouldn’t be enough to do everything I would love to do, but I am very satisfied with how much time I do spend on interests outside of science.

Yes there’s never enough time to do everything. Although it sounds like you’ve got a very good balance. What’s next for you then? To continue with the trial I presume?

Yes to continue with the trial but also my small team and I will be doing more research. So we’ll be trying to develop the simple procedure we’ve used so that it is better, and more optimised. The procedure we’ve used is like the Wright Brothers first aeroplane and it flew 120 yards. Now we’ve got that and proven flight is possible but now you’re asking me to make a jet airliner.

And can you?

Well I don’t know if I can but in the end I think we will. Once people can see they can fly their interested is piqued. Now it is about convincing them. I would have succeeded in this when it is out of my hands, not when it is in them.

What drew you to this type of research in the first place?

I trickled into it really but I guess what drew me in was the idea that the brain forms new connections. And no one liked that idea, and I had to fight for 15 years to prove it. I was already onto the second idea, whilst they still hadn’t believed the first, and that was if the brain makes new connections then why can’t we repair connections. I am talking about something that begun in 1963.

To have the commitment to see it all the way through really is incredible.

It wasn’t commitment. I had no choice. I was fascinated. How can you not be fascinated? 

“It wasn’t commitment. I had no choice. I was fascinated. How can you not be fascinated? “

And do you still find it fascinating?

Oh, even more so. My father, who was one of the big influencers in my life, was a tailor in a factory and hated every minute of it. He was interested in all forms of nature and used to take me to a woodland and he would just sit there and look at the colour of a fallen leaf, or a stone, or a fish in the stream; he was just so full of wonder. And he passed that on to me. I thought, even back then, that these things were just so amazing. And now all that time has passed I find them even more wonderful than I did then.

Brilliant. It’s so nice to hear of someone who has enjoyed his work more and more as his life has gone on. What was your reaction when you saw Darak was able to walk again? Did you feel enormous pride?

Well I have a team. I’ve had the same two colleagues with me for 30 years. So I felt pride for the team. Pride doesn’t belong to an individual, it belongs to the whole. This wasn’t my property. It’s far too big for one person’s property. This was the team’s doing so if the team feels pride then you feel pride. If they don’t feel pride then you don’t feel pride.

Absolutely. So presumably then you are not driven by praise, awards and accolades?

Everyone is! Everyone has the same emotions as everyone else. But the way you put them together and the way you balance them is very different person to person. There are 26 emotions, love and hate, greed and generosity, and so on – I think we all have 26. But if you think there are 26 letters in the alphabet, every thought that man has ever thought can be put down with those 26 letters and every thought he is going to think can be put down by them. Well the same is true for our emotions. It’s not whether you have those feelings, it’s about how you put them together in your personality, and it’s changing all the time.

So speaking of change. The change you must have seen in your life time, especially in technology, must have been vast. Has that made a big difference to the work that you have been doing? Has is made it easier for someone to be a scientist?

Technology was important and it is important. If you want to do things then you need the machinery to do them. The most important thing I ever had was the electron microscope so I could see what was happening in the brain and spinal cord. But ultimately technology is only useful if the ideas are there. You can have the best technology in the world but without ideas it remains unused.

Very true. Have you always been confident that at some point you would be able to reverse paralysis?

No not at all. I don’t know now. I always tell students that if someone asks you a question the very best answer you can give is that I don’t know. Because you will be right. We can’t get to the complexities of nature, we can only get to bits of it. It will always be more complicated than we can possibly imagine. It will always be outside of our reach and that is why it is so fascinating because you don’t know. The fact you don’t know is what makes it so interesting. If something works for you occasionally then it is a real gift from nature. In my opinion the most difficult thing for my fellow scientists to say is that they ‘don’t know’. They hang on to their idea and they fight for them but they’re never prepared to say, “yes it looks like that to me now but I could still be wrong.”

And do you think that your attitude has helped you get to where you are today?

I always felt one thing with science, and not many scientists would say this – be honest. I have always been honest. There were things that I wanted to be and to appear but I never let that affect my judgment on how they actually were, and how they actually appeared. It’s not a common thing.

Especially in today’s world.

And if what you want changes what you say you know to be true that’s deep dishonesty. What are things in front of you – what do they mean? Not what you want to appear in front of you, and what you hope they mean.

That’s fascinating. So just the last few things if I may. You’ve obviously been in the news a lot recently. How do you find that? Is it all a bit alien?

Well, there’s no simple answer. It’s been horrible dealing with 2000 emails I tell you.

Yeah, sorry for my three!

It was nice to see Panorama and the BBC news piece made so beautifully. I couldn’t help but like them. Publicity in general is very mixed. I can use it to raise funds and I can use it politically – to protect us from being thrown out the institute. So it’s had its uses. The best thing about it is how old school friends have got back in touch, that’s been great. But in general the only thing I really like is speaking to students about ideas, particularly with students abroad who aren’t quite as cynical. Those that are incredibly excited about ideas and work out how to progress those ideas. So I do enjoy that.

Great. You mentioned there that the publicity has helped protect you from being thrown out the institute. Why on earth would you be thrown out?

Oh yeah. I’ve been fired 3 times, retired several times. I wear these like badges of honour – I am quite proud of them in a way!

 “I’ve been fired 3 times, retired several times. I wear these like badges of honour…”

From the outside in it seems what you are doing is an unbelievable thing so why would you be fired?

I think you have just said the answer. When you do something that other people haven’t done then you are not one of the boys. When you’re honest, like I am, then you are even less one of the boys. And if you can’t be bothered to go to meetings, and sit on committees – and I never could – then you are automatically a nuisance and an embarrassment. You have to accept that. 

That’s pretty tragic though?

It is tragic but if everyone treated me with great respect and honour then surely I would have become terribly corrupted and conceited. I wouldn’t have been able to resist that. But the fact I have been treated with a hatred, and an envy in every place I have been in, then it makes you look at yourself and think what it is you really respect, what it is that is important to you and what it is you want to do. It gives you balance. After all I have not been thrown out by people I respect. You said it earlier – it’s “unbelievable” and if something can’t be believed, and is so new and as major as what we are doing then you are a threat. These people though have helped me. They’ve kept my feet on the floor.

I was in Tibet a while ago with a graduate and we ended up in a dark cafe as I couldn’t go out and be seen. It was a horrible place and she commented how it was very strange to be a famous scientist in a place like this. And I thought now is my chance to teach. I said, “listen, it’s easy to be a famous scientist – I don’t have to do anything at all. It’s a badge that people just give you. The most difficult thing in life is to be a Human Being. And every badge of honour, degree and accolade you get pulls you down. None of them raise you up. They all pull you down. The most important thing is to be a Human Being and you never quite achieve it.”

“The most important thing is to be a Human Being and you never quite achieve it.”

The best thing your readers can do is research. There’s plenty to do. It’s an endless field.

Brilliant. Thank you so much for your time today.