Our Legal Director Mick Laffey, from our Medical Negligence and Serious Injury Team, continues his story of spinal injury and how at the age of 19 he was diagnosed with a rare condition called AVM and had to begin using a wheelchair.
He’s sharing his emotional journey, as well as his practical journey, in the hope that it might be of help to those just starting to manage their own life with a spinal injury. Here we pick up where we left off, in a hospital bed in London…
In the olden days, and by that, I mean the days before social media, and even mobile phones, being stranded 300 miles from home in a hospital bed in London could be very lonely. Especially if you couldn’t move your legs at all, or even feel the pin pricks of the confused looking doctors. I can still remember counting the ceiling tiles as I lay flat on my bed on the ward.
“We’ll send you for a few investigations” they said. They stopped short of actually saying they had no idea what was wrong with me – and why a relatively fit teenage lad’s legs had suddenly stopped working in such a catastrophic way – but that’s certainly how it felt. One thing I did have was the public telephone – which was on wheels and was my link with back home. It was quite expensive to use and I didn’t have many 10p pieces – even after buying as many as I could from the lady who ran the trolley when she came round. Other patients on the ward – and the staff – were keen to assist with my plight and gave or sold me all the coins they had. My friend who lived in London was off to France for a trip to a number of historic sites as part of his history degree, but he sent his mates from college to see me with £5 worth of 10p pieces. Thanks to them I had an extension to my lifeline.
It was cheaper after 6:00pm. So I waited every day until that time and started calling people. I’d keep them informed of my progress – or lack of it – and it literally became my lifeline. After actual “physical” visitors, it was the highlight of my day. I reckon most of the time between 6:00pm and about 10:00pm I was on the phone to someone or other. Nowadays newly injured people in hospital would have access to their mobiles, or social media, or even video calling. That would have been so useful to me, but the phone was good as it got back then.
I was also really pleased with how many people made the effort to come and see me when I was in hospital. Obviously my London based mate came over a few times with his mates and his parents on one occasion. My nana and my mam and dad came down from Newcastle for a week and stayed in a little flat they had on site in the hospital. Other family members and friends made the trip down and stayed in London. People had work and lives themselves and for them to come down to see me to keep my spirits up was something I have always been very grateful for. Around 30 people came to see me in all.
My legendary Watford-based Great Aunt Bridgetta was best of all. She’d see who was coming to see me and would fill in the gaps – coming every day someone else wasn’t. In the month I was in London she must have made the journey more than a dozen times. And what was better was she’d always bring food. That’s another thing people don’t realise about extended stays in hospital. The food is terrible. But Auntie Getty would bring me the finest food the Watford branch of M&S had to offer.
So the days were filled with visitors and phone calls interspersed with investigations. I had an angiogram, a myelogram and an MRI scan, the latter at a private clinic in central London. The tests were uncomfortable and unpleasant. After one of them I remember them saying that they’d injected my spine with a contrast dye so they could get a better picture of my spinal cord to see if they could get a better idea as to what the issue was. They were quite clear in telling me that, having been injected with this dye, I was NOT to bend over under any circumstances. If I did the dye would run into my head and cause what they described as “bad headaches”. I’ve never sat so bolt upright in my life.
Eventually, after at least two weeks in hospital one of the doctors came over to see me. He brought with him a book and thumbed through it to a section in the middle. He pointed to a few paragraphs taking up less than half a page under a heading something like “Arterial Venous Malformation”. He proudly said that they thought I had an AVM as there was a web of rogue blood vessels at L2 in my spine which was bang on the money for causing the problems I had. He described it as a birthmark on my spine and said that here was nothing that could have been done about it. It was like an aneurysm – just in my back. He explained that he’d never seen one before and they were very rare, which was not a great bonus to me.
Now that they knew what was wrong with me, they could send me back up to a Northern based spinal unit and made plans to send me “home” to the regional centre in Hexham. I was starting to move one of my toes by now which also gave them great encouragement. So I had to wait in hospital until the move. People still kept coming to see me and I kept telephoning at 6:00pm+ every day. At least I had something to tell them now, about my condition and progress. In my final few weeks they explained that they had a number of students training to be doctors at the hospital – and would it be alright if they could examine – and try and diagnose – me as an interesting case. I couldn’t help but point them in the right direction when they did so, in an attempt to help them in their exams!
And so the days dragged on and on until I was allowed home. That’s another thing about hospitals – days last forever. You never get a good night’s sleep as people are always moving about. It was a pretty heavy-duty ward and on one occasion the chap in the bed next to me died. He’d been having trouble all night and they pulled the screens round him and were with him all the time. When I woke the next morning, his bed was empty. You wake up early as well and lying there and doing nothing at all is so boring and the time just drags. A day in hospital lasts two days in the real world.
They arranged to send me back up North by sending me with a nurse on a train from Kings Cross – the very station I’d arrived at a month or so earlier. She was lovely and helped wheel me on the train in a wheelchair. The plan was for me to be picked up by my dad at Newcastle central station – but he had to find a wheelchair as the nurse had to take theirs back with her. Another aunt was a physiotherapist herself – and borrowed a sports chair from work. My dad picked me up and I was set. There was a welcoming committee – and ramps – at mam and dad’s house that Saturday. I knew I had to report at Hexham spinal injuries unit on Monday morning. That weekend was bizarre as I received visitor after visitor.
A whole new world awaited me at Hexham.
That seemed to be more of a rehabilitation ward – with a load of people who’d been injured in the past – some going back many years. That’s where I learned about the currency of your injury. By that I mean that all the other patients wanted to know why you were there – and what had happened to you – and wanted to tell you what had happened to them. That’s what I mean by currency. They’d tell me quite candidly about their injuries. There was a lad who’d snapped his neck in a rugby game. Loads of car crash and motorbike accident victims and one chap who’d fallen off a ladder. There was a lady who’d been injured in a gymnastic accident. None of them had heard about an AVM. So I was unique in that regard, though their injuries were all more interesting than mine. The majority on the ward were young males. There were a lot of older males too. And only a few female patients. They explained it was because men often did stupid things. It was hard to disagree.
As it was a rehabilitation ward – and as I’d shown some scope for recovery so far – it was decided that I was going to undergo a very intensive physiotherapy course. And so that’s what happened. They explained that I could go out of the hospital too if I liked – in my sports wheelchair. There was, unbelievably, a disabled club called “The Torch” specifically for patients just across the road. And it had a bar. So most nights me and the lads from the ward would roll over and get drunk.
Visitors would come and see me and take me over there. It was great and seemed very normal. We’d take the tetraplegic lads over and get them pints, holding their pints up to their mouths or setting up long rubber straws for them so they could drink their pints themselves. It was amazing how normal this disabled world was becoming to me, my family and friends.
It wasn’t all fun however. Physio was a chore and I missed it one morning as I was so hungover – so they barred me from the club for a week. I also crashed my wheelchair into a radiator as I was drunk one night, falling out into the corridor and having to be picked up by my dad and sat back in my chair.
Most of the time it was magnificent and the camaraderie between the patients was splendid. One of the lads who we had to help could just about use one hand, so he had an electric wheelchair. He was therefore able to tow the manual wheelchair lads like me back up the hill to the ward after the club. We helped him so he helped us. Like I said the camaraderie was impressive.
So I knew what was wrong with me now – and what they wanted to do. They saw improvement and wanted to see how much better I’d get. So did I to be fair…