It only seems like yesterday. So, how has it been thirty years?
I found this blog in my drafts. I’d written it June 2023 and forgotten all about it.
The Begining of 30 Years
At the start, I have memories of being bedridden in St George Ward when it was upstairs in the National Spinal Injuries Centre Stoke Mandeville. I hadn’t a clue how I had got there or what I was doing there, but I knew I was in the hospital. I was on the end of a six-bed bay, and people, nurses, doctors, housekeeping staff and wheelchair users passed by regularly.
Looking across the beds through the windows, I could see the tops of double-decker busses disappear behind buildings. And in the far reaches of the distance, the Chiltern Hills, with the Obelisk on Coombe Hill which overlooks the Vale of Aylesbury.
But why was I there?
I had been in an induced coma for a couple of weeks and then had some time drifting in and out of consciousness. It took some time to finally realise something was amiss.
When visitors started appearing around my bed, I remember looking up at my mates, and I felt confident to mention to them, with a weird joking tone to my voice, I hadn’t been to the toilet. I hadn’t realised I had no feeling or sensation and was catheterised. I’m not going to mention the number twos.
During one visit to my bedside, Dr Hans Frankel did the pin test on his weekly ward round. He announced his findings, and the diagnosis was T4 paraplegia – I had suffered a complete Spinal Cord Injury (SCI).
I’m told, after some explanation, I’m paralysed, and I’ll unlikely ever walk again.
I cried…..
Although not because I won’t be able to walk. More for the fact I’ll never ride my push bike again or climb a tree.
The long-drawn-out bedrest
As the eight weeks of bed rest ended, following the regular bed baths and visits from nurses, friends and family. Eventually, the staff slid a sling underneath me. I was hoisted up and lowered into a chrome cruiser, the big chrome Carter’s wheelchair featuring a high red backrest with push handles, massive swing-away footrests and armrests you could serve alcohol from. This chariot I could not back-wheel balance at the time.
My first trip using wheels was a tour of the ward. The nurses’ station, a view of the toilets, side rooms, the smoked-filled day room with chairs, tables, board games and a TV & Video; then somebody showed the lifts that offered an exit from the ward. However, my downstairs tour had to wait as I was only allowed up for a limited time.
Rehab – the new beginning.
At the start of my thirty years, building up time of sitting uncomfortably in my Chrome Cruizer, I wheeled down to the lifts and got shown the rest of the hospital. Well, I call it a hospital, I suppose it is, although the part I was in wasn’t a hospital, but a rehabilitation centre; there weren’t ill people there.
Entering the lift for the first time, I noticed the control panel had few buttons. I realised I was on the top floor of a two-storey building. Shock and surprise took me! From what I had been told of the reputation of the National Spinal Injuries Centre Stoke Mandeville, the first rehab centre in the world for people with spinal cord injury, the birthplace of the Paralympics, opened by King Charles, who was Prince Charles at the time, and his then-wife Lady Diana – I saw a picture of them in the main reception on the grand opening – For some reason I was envisaging a tall, multi-story building with a mass of people coming and going. I’m not saying I was disappointed, although my original image of the building was immediately stripped away.
And So It begins
I had a lovely Scottish physio called Alison; my OT was Karen, and Jean Crisp ran patient education (PE).
Physio was muscle building, stretches, snooker, archery and before long, standing in an Oswestry wooden standing frame looking across the gym at others doing rehab, board! I later discovered that participating in snooker and archery was to develop balance.
OT involved learning practical things like cooking. I made my sliding board, albeit I’ve never used it. And I think dressing?
To me, PE felt like learning the reality of having SCI. The big slap in the face of this is your life now; get on with it. Learn to live with it!
The topics in these sessions covered everything I needed to know. What life will be like, how to live. What you can do – anything you want to and what to be careful of.
Ex-patients.
Ex-patients led one talk, and my only connection was SCI. I had been working in a factory before the injury, and I was no office guy!
Relationships, sex and fatherhood were other subjects – I remember feeling out of touch here; on the contrary, why would anyone want a relationship with someone who uses a wheelchair?
In fact, I admit all of PE was a bit of a blur. Indeed, I’m not sure if it was because I still had drugs mixed in my body or because I was 17, but I was losing interest fast.
Moreover, I remember the stories, pictures, and warnings of pressure sores.
Images of people’s exposed hip bones. Deep holes in butt cheeks big enough to put a clenched fist into. On the one hand, those images have stuck with me, scared me and made me check my skin regularly. If not over cautiously. However, now, I wish I had taken the lessons in PE on board more and been more careful.
Through the years.
I’ve done bed rest over the thirty years since my injury. Luckily, only for a couple of weeks each time. I caught them early. Causes may have been drunkenness, dehydrated skin, poor circulation, falling out of my chair, or a combination. I feel lucky to have avoided long-term bed rest.
It’s coming.
I can see it coming, like the light mounted on the front of a powerful locomotive, bearing down towards me, far off in the distance.
The years spent ‘enjoying’ myself have caught up with me now.
As a regular visitor in Out Patients for over thirty years, in my 20s, the caring staff told me to slow down and be careful; it will catch up with me when I’m older. Yet still, live, and enjoy yourself – which I did, maybe a little too much!
I’m in my late 40s, with greying hair and asking my barber to trim ear hair. Bed rest is coming. I can see the difference in skin tone. I can envisage the breakdown and fear the worse.
But it might never happen, I’m told. There are SCI survivors who have passed my thirty years without problems. I hope it doesn’t happen, but that won’t remove my fear of the worst-case scenario.
Bed rest is not what I fear the most. I can imagine it’s fairly easy now with the internet and box sets readily available to stream. Bed rest 20 years ago was a lot harder.
My biggest fear is not being able to fulfil my role in life. Be a father and husband, and teach life-changing wheelchair skills. My wife and son didn’t sign up for me being laid up, and because of this, my worries mix with guilt if it happens.
But why did I let it get this bad?
In the early days of my thirty years of living with SCI, I recall waking up with vomit stuck to the side of my face, in my hair, and splattered over the bedsheets and carpet next to my bed in my living quarters in my parent’s front room. The inhaling of cigarettes — knocking back shots of Scotch or Vodka mixed with coke or energy drinks, with pints of beer waiting on the bar. In my head, I knew this was not sensible. But at the time, it was what I needed to do to remove the fact that SCI is, or can, be a bummer. Although this is the first time I’ve admitted it,
Like my mates, I wanted to be ‘normal‘. Have a girlfriend, walk the dog over muddy footpaths in the fields, take a spontaneous trip to Ibiza or travel to Thai Land and Australia—I know I can do this. However, 25 or so years ago, when my disability was still sort of fresh, it seemed an impossibility and far beyond my reach. I had never even experienced flying at this point.
Maybe I lived like I did because I was scared.
Lucky Numbers.
I can recall the first draw of the National Lottery. Buying a ticket, hoping it would make everything alright. I crossed my fingers for the winning numbers. With hope, I watched the draw on the pub TV, only to watch my numbers not come in. My heart sank. I wheeled slowly home and cried… again.
In contrast, during the thirty years, I realised life is hard for everyone. It’s just how you deal with that hardness that makes the difference.
So where am I now?
Thirty years later, how has it been? After the initial diagnosis, I’m married, a father, and a business owner, although I have that constant skin worry.
I do what I can — teaching wheelchair skills as required by the Case Manager or private clients and being a husband and father. As head chef, I cook the meals at home and cherish my time with family and friends. And keep an eye on my butt.
But I should have listened!
Managing my self-care can be a challenge. I take time out of my life to look after myself. Not just for my sake.
This is a warning
If you are reading this and are new to SCI or disability. Be careful. Don’t go crazy. Listen to your peers. I thought Yea, Yea, Yea; it won’t happen to me. But now it is!
If it wasn’t for married life, making me grown up and a little more sensible, I might still be going out regularly and ending up in a state.
Possibly too late, I realised there is more to life than time spent with hangovers.
It’s Not All Doom & Gloom
How has it been thirty years? I have been lucky to visit beautiful places and meet smashing people. Thanks to Back Up for my first introduction to pushing myself. Creating an opportunity to try activities in the Lake District I’d never thought possible as a wheelchair user, trying something new. Ok, I wasn’t keen on horse riding, but at least I gave it a go! I took part in other activities as well, canoeing, abseiling, camping and not forgetting team building challenges.
The following year, the charity took me to Colorado to have a go at sit skiing – I had never left this country before that transatlantic flight. I was amazed at the scale of things. It was a great chance to push my limits even further than I did in Keswick. However, I found the cold a bit much. However, it was great fun and an exciting opportunity.
The Small Print
This blog is about my thoughts as I mark the thirtieth anniversary of my injury. I understand my fears may not develop, and I don’t want to scare people reading this. We are all different.
Live and enjoy life!
How has it been thirty years? I never thought I’d be a dad and be able to play knights. I wouldn’t change a thing!
Did you notice the word Disability isn’t used once in this Blog post? I think it’s a horrible word. I have a Spinal Cord Injury.