The above picture was taken in the Summer of 1994 or 1995 during a time trial. I’ve no idea of the exact date but I do recall that it was taken somewhere in Worcestershire. It had been raining heavily before and during the race and the course would be described as ‘sporting‘, in other words there were a few hills. I’m going up a gradient in this picture. When this image was snapped I’d have been ‘pushing it’ so hard that I must have been at my physical limit. I wonder whether that aneurysm was bubling away inside my head?
The last time I was on a bike was on Wed 24th July 1996, three days before my brain haemorrhage. I had been a keen cyclist. I’m not exactly a mechanically minded person but I was fascinated by bikes. I liked the idea of being able to go where you pleased totally under your own will and effort. The self-sufficiency of owning and using a bike was a constant source of satisfaction for me. Training rides , especially on dark winter evenings around the lanes, suitably attired and illuminated, breathing the cold, damp, cleansing air that smelled and tasted of undergrowth and fresh dirt and winter fields was a source of constant pleasure. The darkness of the lanes being cut by the main front beam and the almost total blackness behind except for a red glow from the tail light a quick look over the shoulder being exhilaratingly unnerving. Sometimes the only sound being the whirr of the chain on the sprockets and the sticky hiss of two tyres against wet tarmac, the mind on auto pilot, eyes fixed on the light ahead. Pushing and pulling on the pedals, feeling the familiar burn inside the thigh muscles as you upped the tempo on the hills. Then the satisfaction of the homeward stretch anticipating a shower, food and rest. Winter evening rides were really something special back then. Spiritual.
I used to maintain my own bikes. I had three of them. One for racing, one for training and touring and an old BSA bike which I’d had since 1975…the only original part of that bike was the frame as everything else had been replaced over the years, a sturdy heavy thing great for muddy winter rides and reliably satisfying to be on, a real work horse of a bike. Most club riders then had a hacking bike and the BSA one was mine.
I belonged to a racing cyclist club at the time; racing cyclist because we all raced, whether it was time trialling, road racing or on the track. Like in any organisation you tend to gravitate towards people you instinctively know you’d get along with and I became part of a group of 4 or 5 like-minded blokes who used to ride out together. We all had varying degrees of ability and fitness, strengths and weaknesses. What we lacked in natural ability we made up in dogged persistence. We got ourselves as fit as we possible could. Trained and raced together. A steady weekend ride could easily develop into a mini road race, each taking a turn at the front of the group until you had to swing off to the back of the line to recuperate for a few minutes.Such bursts of effort could last for miles or just as quickly peter out back into our steady ride. This was the rule of our group, we were racers not tourists. Tough spontaneous training like this did wonders for the fitness levels. I used to take Sean out on leisurely bike rides through the local park and on more adventurous rides along the Tissington Trail. Great fun.
Bike technology was changing fast with the improvement in clip less pedals and aerodynamics, new braking and gear systems which left a lot of club riders struggling to keep up. However there was an air of thriftiness around club cycling in those days. Bike parts where always being handed down or borrowed or resources pooled to buy stuff in bulk. There was also a professional rider linked to our club who rode for a pro team and once or twice a year he’d bring in all his old cycle tops, shorts, hats and various bits and pieces to hand down to the riders. Cycling wasn’t a fashion parade and if an old piece of equipment worked and was comfortable and reliable then why change it. As a BCF coach once said in a seminar that I attended, “ you can tart your bike up as much as you like but it comes down to the man riding it!”. .
In the months and years after my Brain Haemorrhage I never really thought much about cycling. I was just happy to be alive and getting through a day was enough to be working on anyway. I knew that with only half vision there was no way that I was going to get back on a bike again and I was scared that my head would ‘pop‘ again under any strain. I never renewed my club membership or kept in touch with my former team mates. I took no further interest in it whatsoever. I never watched it, I never read about it, I totally ignored it. The recent success of British cycling has passed me by. Successes that would have had me putting the flags out have barely raised an eyebrow. I wonder why this is? I really cannot understand the reason for my sheer indifference to something I once loved.
A couple of years into my recovery and adjustment my wife had asked me what I was going to do with all my cycling equipment. I must have been in a very low state of mind at that time because I said to her to get rid of it., “What do you mean”, she said, “Dump it”, I replied. And that’s exactly what happened to my bikes and equipment. I insisted it had to go. It was taken to the local recycling unit and “dumped”,along with numerous wheels and bike components. I’m sure that a few people couldn’t believe their luck that day and quickly reclaimed the bikes and other stuff but maybe it all ended up being melted down. , who knows. So that bike you see in the picture was thrown away along with my other two, including the 1975 BSA model. Regrets?…..I don’t know; I suppose with hindsight I should have sold the equipment and made a few quid out of it.However, I think that by my almost ritualistic disposal satisfied some kind of need within me to rid myself of something that I had once loved and could no longer face; a little dramatic, but my way of ‘hanging up my boots’.. So what’s the reason for this post? Well…. I used to ride a bike.
Here is a short video story I have produced which attempts to remember the two days prior to my Fathers Subarachnoid Haemorrhage when My Dad, my sister and myself had consecutive days out on Thursday 25th July and Friday 26th July 1996.
I thought that it would be interesting to try the recent Phonar Creative workshop with my Dad. As he is Partially sighted i thought it would be interesting to have him taking the photographs. I had just dropped off my Dad at my Grandparents house. My Nan was in hospital so my Dad was staying there with my Grandad and they were getting ready to go and visit my Nan in the hospital. Here is the Video we came up with.
I mentioned in my first post , that I am going to try to make some kind of sense about what happened to me when a blood vessel exploded in my brain. These posts will be the first time I’ve ever written anything about it. I have talked many times on the subject to lots of people but such verbal expression always seems to me to be for the benefit of the listener; I feel that I’ve never expressed the experience for myself and to try to make sense of it for myself. To do this I think my posts are going to have to be random, out of sequence and thus be hard to follow. I am going to have to be open and personal and true in order for me to fathom it out for myself .So therefore in this post I want to go back to the day of my brain haemorrhage……
The morning of Saturday 27th July 1996 was bright and sunny and warm. The weather had been the same all week and I felt immensely optimistic about life, I honestly remember having one of those rare euphoric moments when you know that things are going to work out alright. I had been living away from home for about a year which had proved sad but necessary at the time for both my wife and I; a trial separation I suppose. I saw the children, almost every night and always at weekends. My wife and I had been getting on far better with each other as a result of this arrangement.
I was at the end of a two-week holiday and I really did feel refreshed and rested and ready to get back to work. I’d had a wonderful time with the children over the holidays. I’d had a great two weeks break.
Anyway back to the morning of Saturday 27th July……I drove over to the family home rather early. As I parked my car on the drive and got out from behind the wheel I would have had no idea that within half an hour I would never be able to drive a car again. How could I know?
The children were having breakfast and as I had arrived unexpectedly earlier than usual, I sensed a little bit of tension between my wife and I, something we both wanted to avoid, so I slunk off into the garage to lift some weights. Even though we were living apart we had agreed that I could still use the “home gym” that I had built. I had converted the garage of the family house into a small home gym. A bench, a squat rack, a sit up bench, a chinning bar and lots of free weights. Dumbbells and barbells littered the floor. My bikes hung on racks from the ceiling along with all kinds of racing wheels. I used to shut myself away for an hour or two in the ‘gym’ about 3 to 4 times a week all year round, sweating in the summer and steaming in the winter. I used to bench press too much weight, failing the press after a few reps and getting trapped underneath the barbell. This was a dangerous regular occurrence so I never put collars on the barbells which allowed me to slide the weights off if I found myself in this predicament. The weights crashing to the concrete floor as they slid from the bar causing the whole garage to vibrate but saving me from asphyxiation. Ha-ha ,what an absolute dick I must have been to put myself through such torture.
A large poster of multiple Tour de France winner Miguel Indurain and an equally large print of Vic Reeves adorned the one wall. A bizarre combination but they were great posters. Miguel for inspiration and Vic for the humour and for the pure hilarity of the look on his face.
So on the morning of the 27th July 1996 I wandered into the garage. I didn’t warm up and threw myself into a set of bench presses at a weight of approximately 150 lbs. Half way through the first set of 10 reps I felt a ‘pull’ deep inside the right of my forehead, a uniquely exquisite pain like a sharp, obscure pin prick and itch rolled into one. Stupidly, I literally pressed on, finishing the 10 reps. I sat up and the headache eased a little so I went into another set of 10 repetitions. The headache came back again, slightly worse this time. I secured the barbell and sat up rubbing my forehead expecting the pain to subside, but it didn’t . I then noticed that my vision appeared strange ,I wasn’t seeing normally, there was something wrong, I wasn’t sure what, but I was seeing the world around me in a different way. Far different from what my senses were used to. I couldn’t figure it out. What was going on? I sat on the edge of the bench in the garage looking around myself trying to figure out what was wrong. The world around me seemed flat and incomplete. The incompleteness was all around me and this misprint, this flaw, this error in what I was seeing was moving in tandem together with the movement of my eyes and it was getting worse. It came to me then, by instinct rather than expertise, that I may be having a stroke. I had no real idea what a stroke was, but what ever it was that was happening to me, I knew that something serious was up with my body. What I didn’t know was that I was having a brain haemorrhage. A malformed blood vessel had blown in my head leaking it’s contents into my brain.
Okay, rewind back 6 weeks to sometime in June 1996. I had started to get headaches. Nothing new for me as I regularly would develop a tension headache especially after a particularly stressful day at work. .But these headaches were different, like a persistently bad hangover headache, real throbbing to your pulse headaches that wouldn’t shift. So I’d made an appointment to see an optometrist for an eye test after work one day. I remember he seemed to spend an awfully long time looking into the back of my eyes with his magnifiers and instruments. He was about my own age, he looked a little nervous and I noticed how his thin fair hair was receding at his temples. He wore glasses, a circular wire framed pair which were trendy at the time. He was a good-looking man. Strange how I remember these things. We never finished the eye test. He went over to his desk and handwrote a letter and put it into an envelope and sealed it. He told me that he had found swellings at the back of both eyes and I was to take the letter to my GP. He said it was nothing to worry about and fairly routine but I should see my doctor as soon as possible.
At that time my GP ran an evening surgery so I headed straight over to his office and managed to get into see him. I showed him the letter. He opened it, read it and got straight on to the Eye Hospital in Birmingham and arranged an appointment for the very next day. I attended the Eye Hospital as arranged; I wasn’t worried in the slightest in fact I was grateful for a few hours away from work. With my head braced into some kind of frame I was fussed over by 2 doctors who took turns at looking into my eyes. What they found was some swelling around the point were my optical nerve joined the back of each eye. This sounded like nothing to me and I was ready to shrug it off and get back to work and just forget it. However, when a Consultant was summoned to take a look I started to feel a little uneasy. The Consultant spent quite a bit of time looking into my eyes; my head braced on the frame again. They all went off to discuss their findings leaving me sitting in the examining room half blinded from the drops they had put into my eyes. Anyhow, I ended up spending almost a full day at the hospital. I saw the Consultant again and he explained to me that I did indeed have swellings around my optical nerve but they were well within tolerance levels. What were tolerance levels ? I had no idea, I know that I didn’t really care at the time. I was wondering what intolerant levels were. I was happily discharged with my tolerance levels . Little did anyone know that this was probably the first showing of a build up of pressure within the optical cortex of my brain caused by the malformed blood vessel that was about to blow. It’s so easy to come up with this conclusion now, years later, but how could anyone know for sure what the real reason was for those swellings at the back of my eyes at that time. It’s interesting to think that as I don’t have any swelling now, it must have been a precursor, or maybe a warning of an imminent brain incident. I will never know.
It was a lovely sunny day and I was happy to be out of the hospital. I staggered around the car park looking for my car as the drops that had been put into my eyes hadn’t worn off and I was virtually sightless from the glare of the sun. I found my car and sat inside it for about an hour waiting to recover. I must have drove home by instinct, squinting over the steering wheel on the M6 towards home. I can remember the drive home, in the slow lane watching the white line of the hard shoulder with one eye. The other closed because it couldn’t take the brightness of the sun’s reflection on the windscreen ; the exit off the motorway was tricky, a bend to the left and a roundabout. Arriving home I went into the garden flopped into a chair and closed my eyes. The following day I went back to work, put the day behind me and duly forgot all about it.
Part 2 of ‘Brain haemorrhage day’, to follow…..I go blind, get misdiagnosed, I am transfered to 4 hospitals in a day and told I may not survive the night.
I am going to attempt to try and create, as honestly as my memory and writing capabilities allow, what my life was like leading up to my brain haemorrhage. I am not jotting this down for some kind of warming egotistical nostalgic reasons that only I and maybe my family would find interesting but because like I mentioned in my first post , one of the reasons I agreed to do this was to try and document and make some kind of sense about how an exploding blood vessel in my head changed my life and the lives of those around me. I am later hoping to bring the story up to date as the Welfare Reform Bill or more specifically the transition of the old Incapacity Benefit to the new Employment Support Allowance starts to bite and how it as effected me. I am hoping that the narration will stay apolitical, not leaning to any side of the political spectrum, left, centre or right because I am convinced that we,disabled and sick people,as individuals mean nothing to either side. We are statistics on a spreadsheet, a burden that costs the treasury increasing billions of pounds a year and this expense must be reduced at any cost………and if I am really honest, a part of me tends to agree with this thinking or maybe I am becoming conditioned to feel ” guilty” about the benefit that I currently recieve. I don’t know.
The last Government initiated the Welfare Reform Bill which was then taken up whole heartedly by the current Coalition Government and more; so we could say that it was a joint party initiative. I knew that the reforms would effect me in some way; and if I’m really honest, I was in agreement myself that the benefit system needed an overhaul, but I went along thinking that genuine cases of disability , that people like me were “safe”. I thought that the “bad back” malingerers would be the ones to be hit, the ones caught playing golf or football or riding a bike or digging the garden; these would be the unfortunates who had to worry. I thought that I was one of the “safe” ones; like I thought before my illness that I was safe. That the bad luck of a heart attack or cancer or a car smash or a disability or a break in or a loss would never happen to me. I now know that my feeling of safeness is fundamentally flawed. There is no “safe”, there is never a “safe”.
If I was reading this, I know for a fact I’d be thinking, “ oh here we go again, yet another sob story, another load of soul searching rubbish, another skiver who doesn’t want to get off his arse and get a job ”, and I would move on to something else and I don’t blame you if you do. I get sick of reading or listening to this stuff too. However, the blood vessel that burst in my head, supplied the oxygenated blood, the food, to my right optical cortex, so when it burst it flooded that area with blood and cut off any further supply to the brain tissue. A bleed inside the brain is devastating to brain tissue, it‘s like sand paper. Brain cells, deprived of a blood supply, will die in the matter of minutes, never to recover. Never to recover! I was left with half vision, yes I really do mean half vision, not the PC expression, partially sighted, I mean literal Half Vision and then there are the daily epileptic incidents as a result of the brain damage and more about that in later posts too and also the stone breaking headaches and the effects of having to take a handful of medication to keep the fits at bay. Anyhow, I have been deemed fit for work and I really do intend to try and find a job. So this blog may well end up as an interesting chronicle of one mans attempt to play by the rules and heaven help the Employer who takes me on; even if I get as far as an interview; I’m going to try and document it all. I read recently, and how accurate these statistics are I can’t be sure, that over 30 people have died from their illnesses of those that have been classified as fit for work. I suppose 30 odd is a negligible figure, probably well within Government guidelines. I can just picture the Whitehall mandarins sitting round an oval table coming to the conclusion that 30 deaths make no difference to the overall objectives and pass the biscuits please. Remember that I was a Civil Servant…I know how it works. I wonder whether I’ll be another statistic. Who knows. I pray I won’t be. So, if you can cope with my style of jotting, it should be an interesting journey for us all. Lee
Imagine you are struck down by an illness; an health problem that incapacitates you. You are debilitated so much so that you cannot work. You cannot work for some months or even a year or two or longer. What happens when your statutory sick pay runs out. How are you going to pay your bills. How are you going to pay your mortgage or rent, the utility bills, food…..the essentials. If you have a working partner then the burden will fall on them no doubt but what if you don’t, what if you are the only wage earner, what happens?. You may well have a little bit of savings but not much, enough to see you through a few months maybe or even a year or two if your lucky. You may be able to turn to your family for help, that’s if your family are in any kind of position themselves to help you financially.
We would all I should think, turn automatically to the benefit system. To the State, the welfare State to see us through this difficult, stressful time. After all haven’t we been paying our National Insurance to cover us for such eventualities. We would expect the State to help us wouldn’t we, us being genuine cases who need assistance. Well if you can spare 25 minutes or so have a look at this edition of Channel 4’s Despatches from a few weeks ago it may change your mind as to how “ caring ’’ our benefit system really is. It came to my attention when I heard the programme mentioned in a discussion last week on Radio 4.
From my own experience I know how tough and impersonal the new ESA ( Employment Support Allowance )benefit assessments are and in this programme we are shown secretly filmed footage as a doctor goes undercover to train as a medical assessor with the multi national IT French based Atos. This is the private company that now evaluates every claimant for ESA.
Here are some notable quotes from the programme.
From a doctor working for Atos as a trainer “ My speciality is not recognised in this country, so I decided to join Atos”.
Again from the same trainer, “ We should remember that ESA was meant to take people off the benefit”.
And again, “ If someone has no legs but good hands they can propel themselves in a wheelchair, they don‘t get anything”.
And again “ If you lip read or use Braille you are fit for work”. “ As long as you’ve got one finger and can press a button you don’t get anything”.
As a result of pressure from charity groups the Government have launched a review into how people with cancer are being treated. It clearly shows in the programme that certain treatments for cancer, even chemotherapy is no guarantee that you will qualify for benefit under ESA.
So let us hope and pray that you or a member of your family are never struck down with a sickness that stops you from working because the way it looks at the moment the State isn’t going to help you. My ESA benefit stops from 5th October this year. I am deemed fit for work. My appeal is still pending.