Disability Sports Ambassador

Paralysis: An Open Letter Published under | 42 Comments

I watched in sheer amazement, like many others around the world, as the story unfolded yesterday of Darek Fidyaka, the paralysed Polish man who was walking again following surgery to regrow his spinal cord using cells from his nose. A scientific breakthrough of unimaginable consequences for the hundreds of thousands of people around the world affected by Spinal Cord Injury, 40,000 of whom in the UK with a new case occurring on average every 8 hours.  My hour was 1.00pm on the 5th September 1984.  30 years paralysed from the chest down, 30 years sat in a wheelchair unable to move or feel anything from the chest down, 30 years reliant on others to get me washed, dressed, fed and more, much more; stuff so personal you are dehumanised, emasculated to a point where you lose all sense of dignity.

This is not the first time over the past 3 decades there have been ripples of excitement as the media report yet another “miracle” cure which promises an end to paralysis.  I have witnessed them all.  From the so called doctors in Hungary who run camps “guaranteed” to cure paralysis to doctors in China who will inject stem cells into your spine, for a fee of course. Impatient for science to do its thing, krypto-engineers have more recently developed Frankenstein exo-skeletons for paralysed bodies to walk, robot-like, like a modern day freak show. But this latest development is, I sense, different. Different to the point where, if replicated successfully in other SCI patients, could be, just could be, the answer to many people’s prayers.

Despite my cautious optimism, I know in my heart, even if this is the “miracle cure”, it is not for me – it can not be for me.  I am being realistic on two counts. Thirty years sitting down leaves your bones weak, so depleted of calcium they are merely spongelike structures, incapable of bearing any weight. Vertebrae and other joints fused by years and years of immobility by calcification, better known as arthritis. A heart so weak it would be incapable of maintaining blood pressure if I were to stand and other internal organs that have grown over time to keep an inactive body alive, a body incapable of physical exertion and thereby incapable of a cardio-vascular workout.  And all of this without mention of the word pain.  No, I do not feel much pain, but that is because of my paralysis.  Paralysis knocks out your ability to move, but also your ability to feel. So if you are to regain movement, with it will come the pain and the discomfort of that arthritis, those ceased joints and other aches and pains masked by paralysis for so long.  If this is a “miracle” cure, then this is for those with much more recent injuries; just how recent will be a question for the doctors but there will be a cut off point at which those living with SCI will have to make some tough decisions.

I implore you, the reader of this, to try and understand what I am about to say, this may not make sense to you at first. Please consider the hypothesis that actually life is, first and foremost, about being fulfilled in as many ways as possible, but mostly to love and to be loved.  Walking, although something homo sapiens do because that is how we evolved, is actually not an essential ingredient to living a fulfilling life. Useful maybe, but not essential. There is a widespread mentality that “walking” is the gold standard.  If we adopt that attitude then we are also accepting that to be unable to walk is second best. If we as members of the human race are to believe that, then we are automatically, sub-consciously, seeing people who can not walk as less human than those who can.  I have lost count of how many times I have been asked over the years “will you get better?” or “do you think you will be cured?”  Since the news item last night I have received many emails from my fiends, the people who love me the most, asking if I had seen the wonderful news about the possible cure. Well, yes I have  seen the wonderful news but, do people still think I live in hope of walking? As though it is a hope of mine that one day I will spring out of my chair, without any consequences, and continue living my life.  Please, just stop and think for a minute exactly what that would entail.

Don’t get me wrong, I welcome the science. I for one will weep with joy if this means newly injured SCI patients and their loved ones are spared the crucifixion of a lifetime time tethered to a chair, reliant on others.  But spare a thought for those who will never leave their wheelchairs. Those with congenital defects, those with profound and complex disabilities whose parents are watching this latest SCI miracle story and thinking “good for them, but my child or my loved one will never have that opportunity”.  Those disabled people are no less human than you or I but with your “walking is best” mindset, then how are those families supposed to feel knowing there will be no champagne moments for their disabled children and that society and the media see people as “walkers” and “non walkers” – this only perpetuates a medical model of disability which is so wrong and hurtful to many people.

Here is something to think about.  Once my wife has helped me to get washed and dressed and into my wheelchair, I can leave my house on my own, drive my adapted vehicle on my own to my boat 5 miles away. I can get on my adapted boat and drive it another 5 miles to the Isle of Wight where I can get off and go to a meeting.  I can do this in less than an hour.  I can do this because I have created a lifestyle around me which gives me independence. This independence makes my life fulfilling and gives me pleasure and allows me to participate in society as a citizen.  I have the luxuries of a nice house, a nice car and a boat because, despite my disability, I have worked damned hard and overcome many challenges on the way.  That may not be everyone’s way, but it is my way.  The prospect of someone being “cured” of SCI and then to walk with a frame at less than 1mph makes me ask the question; “of the two of us, who is the disabled person”?

So would I accept the “cure” if offered?  If it meant that I could relieve my wife from the burden of giving me 24 hour care, I would be first in the queue, even if that meant forgoing all of the fulfillments I currently have in life.  Despite those fulfillments, nothing eats away at my very soul more than the knowledge that I rely on others to help me, not a day goes by without this feeling. I find that so hard to live with and so unfair on those who care for me – it is a form of mental torture.  I would gladly give up everything in my life if it meant I could break that reliance on others.

Let me finish by giving a word of advice to those with SCI; don’t sit around waiting for the “cure”.  It will come, in time, but understand it may not be your time. The sooner you accept your condition and learn to live with it, the sooner you will recognise your own fulfillments. You will hate me for saying this, just as I hated the paraplegic who said the same thing to me 30 years ago. And remember that those around you love you for who you are, not what you are.  It seems like only yesterday I was 18 when I had my accident, I was scared, not only of how my life would change but I was scared of the future. 30 years on, I’m still scared, but now I am scared about getting old and wanting my son to have a long and happy future – probably exactly the same fears that most people have, disabled or not.

42 Comments have been made

Hi Geoff,
I totally get everything you said especially about walking. Walking is so over-rated, give me back my hands….even just a finger, that would change my world. Standing would only give me another perspective. Too much emphasis is put on walking when the real problems are dealing with inability to use your hands, and dealing with bowels, bladder and sexual function…or lack of. Come up with a cure for those and you can stuff walking!

Ric Cassell says:

Well said! Wish I had the literary skills to have expressed this.

Dave Prince says:

What can I say Geoff, you have said it all.

Digby Fox says:

Geoff, I’ve been out tonight and had three pints of Guinnness and a couple of Cognacs, so please forgive the directness of what I am going to say.

Keep speaking from your heart my friend.

You inspire me, and Elaine, and Tim. That should be Elaine, Tim, and me, sorry.

No need to be perfect. Who is?

Not me.

Bring it on Geoffster. More so.

Tap the good stuff that’s springing up from the bedrock, and pour away.

Diggers xxxx

Debbie says:

Hi Geoff, I’m on a training course for specialised carers for people with SCI and the news have been part of our conversations . I keep on saying that one shouldn’t presume that walking again is the only thing that a person in a wheelchair wants in life. I’m definitely going to share the points you mention in the course. very well said!

Elle says:

It’s always difficult to respond to a post such as this, but for me it is all the more so when it is someone you know. Not because I’m all slushy and stuff… not because I am struggling to find something earth-shattering to say… not because I am in awe of what Geoff has achieved – that all goes without saying… … … … but because the bugger always writes so beautifully, passionately, and from the heart.
He’s also devilishly handsome *cough* and a bloody good laugh over dinner.
E x
PS: Love to the family. Get yourselves over here for a holiday soon!

Pete Burch says:

Geoff, what a fantastic article you have presented for us all to see and thank you for sharing your thoughts with us (Regain).

I can only comment from a personal view point having seen my father go through a traumatic spinal cord injury, losing the feeling in his legs, being a wheelchair user, but thankfully recovering to a point now where he can be as active as any normal 61 year old can be.

My Dad had two discs removed (L4/5) following an accident. The accident caused paralysis in his legs after his sciatic nerve was severely pinched when the discs exploded in his back. Following intensive physio therapy and thankfully due to him being a fit and active individual beforehand, his recovery has been truly incredible. The late surgeon Dr Nick Boeree performed an innovative (at the time) operation on him in a trial which now means he can complete activities from putting his socks on, to walking, to riding motorbikes etc.

My Dad watched the programme and knows just how lucky and fortunate he is to have his complete independence, but at the same time welcommed the scientifc research that is leading to these so called ‘miracle cures’ for spinal cord injury. The reason I have mentioned my Dad is because from an able bodied and non SCI person, I can have very little right to express feelings that contradict your views; however I feel that I do have a personal experience that allows me to at least leave a comment or two in response to your superb article.

Personally, (and I stress these are my personal views are not the views of Regain as a charity) I agree with nearly all your comments Geoff. I remarked exactly the same queries during the programme about the effect and likelihood of this pioneering surgery being effective on someone who is not recently spinal cord injured, the desire for it from many SCI individuals and the problem that comes with false hope.

I do however feel so strongly that the research needs to be carried out and news stories like this need to be promoted as much as possible to 1) increase the awareness of spinal cord injuries and 2) to one day find that, and I disagree with this word but can’t think of a better one, ‘cure’ for paralysis from SCI.

Medical science has advanced so much in the last 100 years – where will we be in another 100 years? Unfortunately I believe people will still be injuring themselves and facing the tragic consequences of a spinal cord injury. Without progress like this, without the continued research and without the trials on human beings, there can be no pathway to a so called cure. I think you will agree that the scientists that have dedicated their lives and careers to this are all fantastic people and deserve the accolades that come their way. They fully understand the mental effects on such a traumatic operation which is why I think those chose this individual. Your point about who is ‘more disabled’ is completely valid and I agree, but surely we have to give him time, maybe even 30 years to fairly debate who is ‘more disabled’. I think we can all accept this wasn’t going to be an overnight fix and his determination pre and post operation to give him the best opportunity to benefit from this unique operation was very impressive. They definitely selected the right individual in my eyes to perform this operation on, both from a mental and physical viewpoint.

I guess my feeling is that the whole spinal cord injured world needs to embrace and promote positively news like this, even if personally the opportunity to maybe one day stand, walk, does not necessarily appeal. The media will of course focus on the ability to stand / walk but remember the individual seemed to be equally impressed with the improved functions such as bowel, bladder, sexual, etc.

I sincerely hope none of my words or views have offended anybody here or you Geoff. From an outsider it is very difficult to comment but I just wanted to express my views as I feel strongly that this news should be seen positively rather than negatively. People spend years, decades even trying to improve the prospects for spinal cord injured inviduals (even the Exo-Skeletal systems – if there wasn’t a demand they wouldn’t exist) and this is what I am trying to convey.

Very best wishes

Pete Burch

John. HB says:

Dearest Geoff. I think we have known each other on and off for over 20 years . The other day you posted something about the minimum wage and disabled people and I had to think twice – why were you posting something about disabled people? What had that got to do with you? I honestly did a double take. I realised I haven’t thought of you as disabled since the first time we talked . As otherrs have said much more elequently than I can – you are one of the most inspirational people one could ever hope to meet. You give more energy and ability to those around you than you can imagine. Stay you. Be whatever you want to be. As Digby says you are an inspiration. Always have been.

Peta says:

Typically well considered and beautifully put. I was one of those people whose first thought was you…but my instinct told me we would be hearing from you in this vein. Looking forward to seeing you soon. x

geoff says:

Blimey, over 400 FB likes and all of these comments. I didn’t write or publish it in expectation of anything but thank you everyone for your understanding.. Love you all. Geoff

Hi Geoff

I read your article with interest and you summed my feelings exactly…. Trying to explain to friends that this new break through wasn’t for me… Explaining that this new break through that this was no good for tetraplegics as they wouldn’t have enough body strength or mobility to excise 5 days a week for three years.. I am a paraplegic and know I couldn’t exercise like that, getting dressed by myself in the morning is my exercise for me… I was in the same ward / hospital as Geoff so we know each others well. Also like Geoff we both got on in life and made a success of our life and made the best of what we were dealt 30 years ago…. I now run several record labels and publishing companies and also run a dog re-homing charity and have just become a Granddad…

David “Dizzy” Holmes

Phil Hogg says:

youve hit the nail on the head Geoff , 23 good years on from my SCI and I’m on top of the world……….x

Rob Smith says:

Hi Geoff,
an excellent summary of just how so many people with SCI feel about this new breakthrough. Well written and I can relate to everything you say.
I think that’s it’s great that science is coming up with new technologies such as medical spinal cord recovery and exso-skeletons. In many years in the future these may well have a significant input into bettering the lives of those with SCI. They need to go through early stage developments for the technology to improve for the future. However for those with a few years of spinal cord injury below our belt (or above it in my C5/6 case) it is likely that we will not see the benefit of this.
I just hope that many of those who have not yet come to terms with their injury and who will grasp at anything to get back to the “holy grail” of walking normally are not exploited into putting all their hopes into this at the expense of living a fulfilling life with SCI. As well as time and money being spent on research in these areas it needs to be balanced with spending it on encouraging society to improve attitudes and environments to enable those with all types of disabilities to lead active, independent lives and contribute to society themselves.

David says:

Hi Geoff great read and very well put, like others of said I cant write like you but just wanted to say I enjoyed reading it as a fellow C 5/6 injury 1984 :)

Sarah says:

I can’t pretend to have any concept of what you go through – my health problems are debilitating, but on nowhere near the same scale. However, I can totally sympathise with the problem of constantly being asked when you will be better, when you will be cured, and so on. I had to accept several years ago that I can no longer work. There are no visible signs that I am ill so no one sees me as disabled, which is as much of a blessing as it is a curse. When I explain to people that I have accepted that I will be in severe pain and suffer from severe fatigue for the rest of my life, and I instead focus on doing the things I can do, I am accused of having given up. Accused of being defeatist or a negative person. People have made dreadfully insulting comments to my face about their opinion of my health for years now. I’ve given up expecting anyone to understand and now I change the subject when it comes up. I’ve been told in no uncertain terms that I shouldn’t talk about it because no one likes a downer. I find this infuriating but it has to be accepted, I can’t change anyone. Personally I believe your attitude is exactly right. I also agree that people place a lot of importance on things that are irrelevant – would I give up the ability to walk in exchange for being pain free? I’d say probably, but that’s hard to know as I’ve never been unable to work. If I was pain free, I could work again (assuming an accessible workplace and transport). But honestly I won’t fall into that “grass is always greener” trap. I don’t have to rely on my husband other than financially, for which I’m incredibly grateful. Sorry, I have rambled (thanks morphine!), I just wanted to say that massively respect your acceptance and adaptability. Keep on focussing on what matters x

Peter Sonksen says:

Here! Here! Very well said Geoff – I’m a ‘newby’ at 12 years.

Clint says:

Halle-fuckin-lujah – An unbelievably eloquent article written by someone who doesn’t ponder on a life full of adversity, where their constant struggles are played to an audience to evoke an element of sympathy or to highlight the difficulties of life with SCI. Instead, I hear about a life full of success, full of achievement and ultimately full of fulfilment. Too often the focus is about the visual achievement, the ability to defy the doctor’s prognosis, ‘you’ll never walk again’ as if it’s some yardstick to your happiness. Is it possible, at times, to forget about the visual and to focus on someone’s achievement as a wheelchair user? Probably, not. As this isn’t the ‘miracle’ story. For me, you might call me lazy, I couldn’t be arsed to spend five hours a day, five days a week, for five years to end up taking a few stumbling steps over a wet bridge. Well done to Darek, he’s worked hard and gained (probably) a route to his own sense of achievement. However, as someone who is paralysed, in the past five years, I have got married to a wonderful girl, had the most beautiful daughter, continued to develop my career as a teacher, travelled around a bit and spent the most valuable of times surrounded by those who make me cry with laughter and fill me with a warmth of satisfaction to make my life one of complete contentment. If you asked me, how would you like to spend the next five years of your life? I would always choose living over hoping.

Jules Prentice says:

Well said that man, my sentiments totally! … it actually made me shed a tear because it touched me at a very deep place; a place that is only fully understood by people who have and live with someone who has a disability. The concept that if you can’t walk you’re a lesser being in some way saddens me to my core . Feeling fulfilled, loving and being loved like you say, are the kind of things that matter and whether that is achieved through walking or with wheels has no relevance to a person being better than another. Thank you for writing this so eloquently.x.

wheelfifi says:

Thank you Geoff, my Sci happened 12 yrs ago and not a week goes by without someone asking me if there is any hope of me getting better or walking again. In fact I have got worse,I used to walk but a couple of years ago I admitted it was to painful and barely functional as well as downright dangerous, falling being an every present possibly. Now a full-time wheelchair user life is so much easier and a darned site less stressful.
I have a family who l love and who protect me from the intrusive, and honestly although Darek and his doctors have come a long way I never visualise myself hip-hitching across a beautiful sunlit bridge. How would he have been with 25 hours physio every week for three years? I get none.

Ted Read says:

On the nail Geoff. Let me know if you need a nose job, other regions by negotiation only !

Really well written and I agree with every well chosen word.
Spinal Injury “Cure”

Whilst the news of a paralysed man walking is seemingly wonderful news for all 40,000 of us with a spinal cord injury (SCI), the media concentrate on this visual aspect as being the breakthrough of a seemingly incurable medical condition. A picture is worth a thousand words but never discloses the concealed core problems.

Spinal Cord Injury was described by Sir Ludwig Guttmann as “Of the many forms of disability which can beset mankind, a severe injury or disease of the spinal cord undoubtedly constitutes one of the most devastating calamities of human life”.

When one is first aware of one’s paralysis it comes as a very unwelcome shock and surprise to find it does not just mean you cannot walk. Unless you have been very directly involved with someone with a SCI, you have no knowledge of what to expect. Everyone knows that walking is almost certainly not an option but how many know the hidden effects of a SCI? The loss of bowel and bladder control, the loss of sensation, often resulting in pressure ulcers, and loss of sexual function are all the devastating hidden horrors of your future life. It is the sincere wish of almost all of those with a SCI to have the restoration of these basic and vital functions. Not being able to walk becomes more of an inconvenience than a major loss and is compensated for by the technology of modern wheelchairs.

This “cure” may be the advance we have been hoping for but, before getting over optimistic, it is only one spinal cord that has been possibly “mended”. Until there are further clinical tests and confirmation we should be cautious. My spinal consultant, Mr Fadel Derry at Stoke Mandeville, has said that the late Prof Carlos Lima in Portugal carried out exactly the same operation of Olfactory nerve cell transplants on several patients in a major research project 10 years ago funded by a large grant from the US department of health. The results were published in scientific journals. Unfortunately all published results and repeat operations proved disappointing.

I have no wish to dampen the excitement of those with a SCI, especially newly injured people or to devalue the incredible work of Prof Geoff Raisman but, whilst being elated by the news, caution should be the watchword at this stage.

Clive Coleman says:

Excellent well written post that just about sums up my feeling entirely. I am a relative ‘newby’ July 2010. T11/12. I am also one of the lucky ones who has total upper body use , my incomplete injury means I have quite a lot of useful movement to the point that I can ‘walk’ a short distance in a frame . I would swop it all for the bodily functions to return, which undoubtably are the worst most degrading and frustrating part of living with SCI. I turned 60 a couple of days ago and I suppose I could say that I have lived a satisfying life so far and that this happened to me at the age of 56, I have had unlike some of you a fruitful happy life. Having played football to a high standard been a sprinter a lead singer in a band and running the London marathon , no to mention the country pursuits , fetching trees down with chainsaws and being a police officer for over 30 years makes ilife as it is,even more frustrating .
Like you I have a positive outlook on life and yes if I can walk again in the future unaided it will be a real bonus . If only to walk my daughter down the aisle on August 1st next year.. I do not know enough about the finer points of this breakthrough, but would it not follow that by this ‘repair’ andr regaining movement that other functions would then also repair to a degree? I fully understand your point though walking is by no means the b all and end all of this condition. In the mean time as you say, be positive make the most of it and I must get back to the gym in November and try to get myself in to the London marathon again and another medal to go with the one I run and the one this year in the chair. As an aside any muso’s out there to form an SCI rock band ….. I could only offer myself as a singer not good enough on the guitar …..Charity do maybe? All the best to all suffering SCI out there not forgetting all the carers who without, life would be so much more difficult. X ….. CC

Helene says:

Geoff, my friend, I think you know how much I love and respect you and Elaine. I am honored to be your friend. So many times I have said to others that you have accomplished so much more in your life than individuals with greater mobility. Your accomplishments and contributions have helped others in meaningful and significant ways.

You have always been larger than life in my eyes, and always will be. TLRMFITW!

Alta Smit says:

Dear Geoff
i an impressed with your eloquent writing and your obvious knowledge and understanding of the medical science of SCI.

I am thinking of starting a photographic project where I shoot from wheelchair height and I am looking for a partner who can stand and walk t o shoot from the level which is considered the norm just to see how different the perspective is.

Go well

Amanda says:

Thank you for sharing this Geoff . It has certainly opened my mind. Lots of love X

luke hamill says:

Great advise Geoff. I was paralysed 24 years ago. Like many chair-users I continue to tolerate 5-10 comments, sympathetic looks or crap car jokes every day. It taught me to control my own beliefs. From losing 2/3 of my body weight feeling unlucky, I decided to choose better beliefs that enabled me to build multiple businesses & get out the 9-5 rat race.

The best advise I ever heard is that if you think you’re lucky, you’re right and if you think you’re unlucky, you’re also right. Choose wisely. I’m about to release my book ‘I’m The Lucky One – Be Lucky Too’. Please support us with profits to spinal injuries charity Aspire. Let’s share more luck in this world…

Wendy Brown says:

Thank god there is someone like you to so eloquently put into words what the rest of us feel. My paralysis is much lower than yours and I value my independence very highly but being unable to walk is not the worst part of an SCI. The most important thing is to make sure we live our lives to the full with no regrets.

Andy Smith says:

Hi Geoff,

As an introduction, I broke my neck @ C5 in 1977. Biceps but no wrist extension.

Like you, I have had a very fulfilled life – studied – married – kids – work – driving – travelling the world etc.

My wife is my only care giver but we are getting older and I would jump at anything just to get triceps. So I watch every “breakthrough” from Dr Goldsmith’s omentum transplant, to
shark embryo’s in Mexico, umbilical cord stem cells , the Portuguese nasal stem cells, Project Walk (good one), FETs, exoskeletons etc.

I will watch with keen interest over the next 5 years as proper clinical trials take place.

With regards to walking, hobbling, shuffling, whatever it might be, I am keen. After nearly 38 years, I believe my legs can still carry my weight. And your question about “who is more disabled?” I could always go back to the wheelchair when time/convenience is an issue!

So yes, it is a cure I will take even after so long as a C5 quad.
(I believe I would live longer :) )

Good luck my fellow quad.

South Africa

Thomas Janssen says:

Dear Geoff,
well spoken. It puts things in perspective. I will have my Dutch students in Human Movement Sciences at the VU University Amsterdam read your letter.
prof.dr. Thomas Janssen

Keith Harris says:

As usual very eloquently put!

It used to drive me crazy how Christopher Reeve could not accept is disability and I felt sorry for him that he spent so much time dreaming of finding a cure for SCI. I believe if he’d have just accepted his fate he could have done so much more to promote SCI injuries and be a spokesman for disability awareness etc

Although I do not have an SCI I would much rather get the use of my arms, hands and get some sort of control over the rest of my body instead of simply walking!

Besides who wants to be “normal” anyway! LOL!

Steve says:

Hello Geoff,
Great post, most of which I agree with and can identify. I recall being told that the ‘cure’ was just around the corner when I was injured 29 years ago.
I was lucky, as an incomplete terra, I was also young enough to use the crude FES available at the time to help increase my level of independence…but I also knew when it was time to stop and start living.
I am lucky…still standing and arthritis only beginning to take hold. Geoff is absolutely correct in what he says…live for now, not for what might be. Enjoy life, love life and be happy.
Everyone is individual and, will take their own path through the journey that paralysis brings. Just don’t let future promises divert you from your own goals and ambitions. Keep it real, be happy and love your life, not the life someone else thinks you should have.

Jerome says:

Hi Geoff
I am very happy that our common friend “the consul a roulette” made me discover your passion and read your work.
You are writing very nicely and clearly about the crucifixion and the temptation to follow false prophets, lamenting and waiting for the promised land to come.
You have proven that your present, your joys (and pains) are determined by your mindset it all happens On the Day, Now, or just yesterday. In French we would say “mettre un pied devant l’autre” no pun intended or more classically Carpe Diem.
This is this “Carpe” that I profoundly admire in humans like you, Edouard and many others. What is described by others as a world of difference and pain, is also lived by some as a world of constraints and adventures, as the reason to make something brilliant of a day to come. I thank you all as my brothers and sisters who are showing me that light exists in the deepest darkness and that your mindset can elevate the body and make you cross the Atlantic and much more. You show us the power of Mankind. Carrying on living the day, whatever Messiah is announced to arrive soon.
Thank you again for what you taught me, my brothers and sisters trapped in your Prison of Flesh.

Nick McFarlane says:

Brilliant piece Geofff. Exactly what I’ve been trying to explain to some friends.

Philippe Durieux says:

Excellent analysis and lesson of Geoff’s life: I will take over his statement (translated to French) in order to talk about it to young people aroung me who are handcaped and with whom I’m playing table tennis.
It’s quite difficult to look AHEAD, just after the accident, when life in the past looks / looked to be so wonderful (motorbike, diving, skiing, hang-gliding, paragliding…): the most difficult thing to do is to adapt oneself to the new situation and to open the eyes in order to see that life is worth to live. For example by enjoying life in a different way, or by meeting marvellous people like Geoff Holt, Philippe Pozzo di Borgo or Edouard Braine.
I think it’s our capacity of ADAPTION that brings salvation, our capacity of RESILIENCE as the great Boris Cyrulnik said.
I hope to be part of Geoff’s fantastic project to sail around the world, I am dreaming to go on a hike with Edouard in a Mobile Dream… In the time being I continue to encourage people in schools, hospitals and companies by showing them that one should never give up.
Geoff’s article is a brilliant example of resiliance which I will recommend to everyone I’ll meet next week in Buenos Aires, where I am representing France at the tournament of para table tennis.
Vive la vie!
Philippe Durieux

Alex Speight says:

Hi what a great read I to have a sci and life in a wheelchair is so so hard. Mine was not an accident it was a spinal tumour. Wwhich has been totally removed. The groundbreaking breakthroughs are so great to hear and read about. As are reading how others cope with problems as a wheelchair user you totally understand. I’m normally a positive guy but I really don’t know how I’m going to cope if I don’t regain the use of my legs as I’m going through as Mich rehab and physio as I can. But I’m telling everyone around me I’m positive and I’m coping but there are days and nights where things just seem to hard. I had the love of a great woman to give me all the motivation I need untill recently but it did not work out. So do I push on with the hope. That medical science will fix me or find another positive to keep me motivated.

Jane Bell says:

Great letter, exactly my thoughts for the past twenty plus years since my brother Paul Airey had his accident, just because he’s in a wheelchair doesn’t make him any less of a human being. He has made a great life for him and his family and in someways does more than us walking people could ever dream of doing. You and all the other wheelchair bound people in this world are a great inspiration to us all.

Hi Geoff,
I agree your great “open letter” on your website…
Hope to see you soon, with our friends Can Öskan, Edouard Braine, Alexandre Bodart-Pinto & Philippe Pozzo di Borgo !
Philippe Streiff

Ed Stafford says:

Geoff I can see why so many people have shared this post. Very well written insight into your life and views. I admire your ability to voice the inconvenient alternative viewpoint. Loving the honesty. Take care mate. Ed

Steve Korbey says:

Hi Geoff
I have just got round to reading your post.
Well said!!


Mark Clutterbrook says:

How I got on this page I don’t know. What a superb read. What an inspiration, I’m 42 amd broke my back in 1997. I was never paralysed but in severe agony for 18 months after plates and bolts in my spine. I’m in agony every day bit have learned to live with it without moaning. This to me is nothing compared to many people and reading this has changed my whole perspective in life, I thank you. Mark, fareham

Comment on this article


Find more in the full archive

About Geoff Holt

An ex-professional yachtsman with many ocean crossings under his belt, Geoff Holt was paralysed in a swimming accident in 1984....

Read more about Geoff...

Join Geoff

on water

The story of Geoff Holt's Personal Everest Solo Round Britain challenge. Order online or find out more.

Geoff in the news