I don’t know whether anyone has been following the ‘Spinal Column’ series by Spinal Cord Injured (SCI) journalist Melanie Reid, in The Times on Saturday(s); it really is the most accurate, comprehensive and frank account of what it is like to sustain an acute neck injury. (I’ve transcribed one installment below – you’ll see what I mean – and week in and week out she’s not written anything that I would not wholly endorse.)
The point I’m going to labour here is that little has changed in over 20 years. I supect it will be a similar story for the next 20 too…..
I had cause for a physio/orthotist appointment at the Duke of Cornwall Spinal Unit today. It was the first time I’d had had to go up to the Gym there in a good (used advisedly) few years. I’ve tried to keep my involvement with the Unit to a minimum – yearly kidney/bladder x-rays and a quick visit to the Spinal Consultant are the prudent limits. However at the last check-up I think the realisation that it has been ten years since the last ‘walking’ review means I’m due a couple more trips than usual this year. (As a complete aside, despite a new A303, it takes just as long to get there and back as it did in the 80′s! Urban congestion at each end being the culprit in my opinion.)
The Gym and Occupational Therapy departments have changed little. A new staff contingent, but essentially the same equipment, benches, and assorted sundries as ‘back in the day’. Supine, on the bench next to the one I am ushered to, is a young chap in a neck collar. An OT is mapping his hands for preserved innervation. He deliberately can’t see her as she randomly probes and pricks with a needle and a soft rubber utensil to (hopefully) elicit a “Yes I can feel that” either “sharp” or “soft”. Inevitably there are some touches that get no response. For now, it’s probably just as well that the youth remains unaware of this deficit. It is one thing to learn for yourself, at one’s own pace, but it can be paradoxically cruel to have it proven by a well meaning but callous procedure. At least that’s what crosses my mind. Just for a minute I’m back in the Eighties. I briefly catch his eye, all I can muster is a mumbled “Alright”, a wink and a half-smile. It’s a fleeting, false, insincere attempt at informed and mutual reassurance. He is wearing the uniform visage of those that have gone before him – the Spinal Legion. In a glance I recognise the trauma of the newly injured. I see the bewilderment, the resignation, the muted hope and desperation, the sadness and mourning, the loneliness, the lingering shock bourne with such a foisted, random, unwelcome, change of circumstance. “Alright” he says back, and courtesies over we revert to our respective therapies.
I feel for him. In the Legion he is the conscripted, raw recruit. Basic training is tough, once you pass-out you won’t want to return to the Camp. (I didn’t.) But new opportunities and challenges await – as long as you are equiped to realise them. As an old soldier I want to share that reassurance; but you can’t….
On reflection I have had a pretty good time of it since ’86 and have done many fantastic things. The cliched expression would be ’and I wouldn’t change any of them’ – but you are always left with a nagging “what if?” And I think that’s it, that’s my Demon. How can you tell someone, with advised conviction, that they should be happy to settle with less than they had? At nineteen I don’t think I’d have got that concept. On leaving the Gym I notice some artwork in the corridor. The DofC SIC’s 25th anniversary has left a celebratory ‘timeline’ along its length. It features volunteered cameos of fellow inmates through the ages. Eagerly I track down 86/87 – so a BIG shout out to Rob Vohra and Mike Martin – both achievers. I am pleased and greatly reassured. It is more than idle, voyeuristic curiosity to know how your compaderies have done. We are Legion. And try as you might – you can never leave the Legion – it will always track you down.
On the drive home I wonder how this young man and his many, many peers around the world will turn-out. I kid myself that they’ll all be fine. I well-up. As I pull myself together, I am not sure if it is for them, or me – the burden of knowing what people have in store is a tricky one to bear.
It’s with a renewed vigour that we plot our fundraising for both the Expedition and Motivation. The challenges are quite tough enough here in the UK. At least the Spinal Units and Community Health and Social Care teams can get people to a place where they can make more with less. I fear that’s not the case in much of the developing world.
You can donate to Motivation via our Just Giving page. For more insight into Spinal Cord Injury you could do much worse than the Times on Saturday – I’m hoping Melanie will put the articles into a book – I hope it has a happy ending.
“Times columnist Melanie Reid broke her neck and back after falling from a horse in April. Writing for the Magazine from hospital, she faces up to her paralysis – but finds the first seeds of hope.
There’s an elephant in the room, of course. It’s that simple but enormous question: will I ever walk again? The same obsession haunts anyone who has suffered a spinal injury during every quiet moment of our days. Sometimes, when I’m not busy, I can sense the elephant’s great grey hide pressing against me; can feel his hot breath on my neck. Will you, won’t you, he asks, not unkindly, but persistently.
Losing the use of one’s legs is profound. It is an event so catastrophic that it puts you though a door into a place which no one who has full function can possibly enter. At times, it’s the scariest, loneliest place in the world. Nothing – nothing at all – can prepare you for the first sight of your paralysed legs, sprawled where you do not feel them to be on the bed, lifeless and somehow deeply misshapen. The first time my bed-head was raised high enough for me to catch sight of my legs, I felt physically sick. They looked like the Guy Fawkes we made as children for Bonfire Night, newspaper stuffed into old socks, ankles bent at unreal angles into discarded, puffy plimsolls. They weren’t my legs at all; they were horrific, alien objects. The only way to describe the impact is to say I felt like I had suffered a compound fracture of the soul.
Now, I’m sure everyone, should they ever be forced to part with them, would be partial to their own legs, but I’ve always been particularly proud of mine; arrogant even. With a 36in inside measurement, my legs are longer than most men’s and put me over 6ft without shoes on. I like – liked – that. To some extent, my legs defined who I was: in their time they pogoed all night and skied down black runs and ran half-marathons and climbed mountains and did crazy charity endurance stunts. I guess they were so strong they made me a little extremist. Amazon woman, able always to skip away from bores and bossiness and bureaucracy. Catch me if you can.
All of which makes paralysis an even more dreadful event to cope with; the sense of bereavement even more profound; the feeling of denial all the greater. I’m sure every sporty person, every individualist and risk-taker who ever damaged their spine feels the same. How do we bridge the imagination gap between what was and what is? Who is this new person who cannot move? I do not know them. Nor do I know what they might become.
In the beginning, post accident, my legs were as dead as could be. It was probably at the end of my second week that I became aware of the vaguest sensation, like pins and needles, when the nurses washed them. I still could not tell which leg they were touching. Around the same time some feeling returned to my bowel – a vital neurological sign for future leg function. It felt like a radio signal from the long-lost Beagle 2 mission to Mars – but it was enough to help in the long dark hours when one seeks, desperately, for hope and comfort.
The changes were too small to log day by day, but over a little while I became aware of more feeling returning to the soles of my feet. My legs began, as it were, to regain some consciousness. I can now – mostly – tell what angle they are lying at. At night I can feel the nerves buzzing and hammering and stuttering inside them. At times it feels like a lawnmower, laid up all winter, trying to start before the first cut of the summer. At others they whirr inside like a computer attempting to reboot itself. Strange analogies come to me: when the nerves thumped particularly hard, I could think only of a minibus I once saw in the Alps, refuelled with petrol instead of diesel, kangarooing a metre at a time up the hill from Bourg St Maurice, belching smoke.
Then, one recent day in gym, when the physio had liberated me from the dreaded elastic stockings, I discovered I could wiggle my toes. It was the faintest of wiggles – weak flickers of life; and one’s toes tire incredibly quickly – but it reduced me to tears of helpless emotion and my family to delight. Surely this could only be a good sign?
It could, of course, but without sounding defeatist it could also be a false dawn. The elephant leans on me gently to remind me of this. Plenty of paralysed people have brief movement and then lose it. My consultant and physio remain studiously noncommittal, preferring the safe ground of the worst case scenario: that I will probably be wheelchair-bound. I don’t blame them at all. They’ve seen my X-rays and MRI scan; I haven’t. How could they possibly offer false hope to us poor cripples? And imagine the fallout if they did?
The day of the toe-wiggle is Ascension Day. I only know this because I hear a church service on Radio 4. Injured on Good Friday, blessed with some movement on Ascension Day. Is this a sign? I’m not religious, but I do know a lot of people have been praying for me. So I accept the coincidence with quiet thanks and good grace. In the land of spinal injury, one takes solace wherever one can find it.
The medical staff inquire, dispassionately, if I have noticed any further movement since my toes. Ankles? Knees? Feet? When something more appears, we will work with it, they tell me. So I lie at night, wiggling the toes, straining to push my heels towards the end of the bed. My hamstrings, permanently constricted in too-short NHS beds – I know this is the West of Scotland, where people grow small, but do all the beds have to be for midgets? – cramp constantly and beg for relief.
So far nothing more has happened. The elephant sighs and settles down for the long haul. And I continue to hope. And hope and hope.”