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.