By Andy Berry
This note attempts to capture the emotional impact of the events that happened to me at Queen Elizabeth Hospital during 1996 and early 1997.
Writing about the events brings back some, but not all, of the shock and horror I felt at the time.
It's impossible to overestimate the impact on Jean. She spent a year living alone, constantly worrying about what was happening to me. She now says "that you have destroyed my life" and that is right.
To go from living with a fairly successful person with a minimal disability to living with a severely disabled unemployed (and, at the time, quite probably, unemployable) person is a change that, I am sure, not many people could cope with at all. That we survived at all is due to Jean's determination and her great strength of character - I'm very lucky that she has chosen to stay with me.
Despite her resilience, these events have destroyed her ability to concentrate and made it unlikely that she will complete her post-graduate course at University. She only started this when we both felt that my future looked reasonably secure - little did we know what was to happen.
I spent most of the time in a state of emotional shock and, later, a feeling of powerlessness and increasing frustration with the incredible events that happened in hospital. I cried a lot, which is totally out-of character.
I lived with constant fear for Jean's safety. When she left, often late at night, to return to Frankley (a journey that often involved two changes of bus and a walk through a council estate) I used to spend the time waiting for a 'phone call saying she'd arrived. The sense of relief to hear her voice saying "I'm back" was wonderful.
There was one incident where some children threw stones at Jean on her way to see me. She arrived in a terrible state and I was completely powerless to help - it was horrible.
I didn't realise at the time the extent to which I depended on the network of support from Jean and Anthony, Vic, Simon, Sharon Hughes, Jacky OSullivan and others. Their quiet actions, no big scenes of emotion, but a group of people who were working and (I subsequently heard) talking together a lot to support me made my life bearable. I dread to think what the outcome would have been without them.
I talked earlier about my feeling of frustration. One of the first things that really got to me was my inability to use the telephone unaided after the operation. The impact on my quality of life was great since picking up the 'phone to talk to people was one of the things I used to take for granted.
To start with, I had to rely on people holding the 'phone - at the time, I had a mobile 'phone. Since nurses didn't regard this as their job I had to rely on visitors or more able patients. There was a time, it must have been about three weeks after the operation, when a patient who helped me a lot got discharged and there was nobody to help. I remember crying, feeling terribly alone and thinking, "this is how Terry Waite must have felt in Beirut" - in a hospital in Central Birmingham. Imagine my feeling when the `phone rang and I was unable to answer it - my first thought was always "I hope Jean is all right". Often, the first thing I asked visitors to do would be to 'phone Jean.
Jean and I are both fairly private people. We enjoy each other's company and most of the time are happy to be doing things together.
To he apart for over a year and placed in a situation of total lack of privacy was very hard to bear. We enjoy a hug and I can remember some of the amazed looks as we hugged each other. The total lack of privacy in hospital really got to all my visitors and me. Vic and others met just outside the hospital even when it was cold simply because it was the only place we could talk in private.
As time went by, I became increasingly aware of a general lack of care amongst the staff at Birmingham. Mainly little things that individually wouldn't matter but together the negative impact on my quality of life was substantial. I gradually became institutionalised - and begun to identify an analogy between being a long-term patient and a prisoner - but some things were hard to accept.
There was, for example, the infamous occasion when I was left on the toilet for one and a half hours because I couldn't reach the bell pull and one shift had forgotten to tell the next one where I was. I still remember the nurses' shocked reaction when I let rip a string of nearly every swear word I knew - they seemed to think it was just one of those things and that I should accept the care they gave without question. (Much later, I encountered the same reaction when the sister at Hillcrest got to hear that I was writing a critical report - a nurse said "Why arc you doing this?" I replied something along the lines of "To help you improve the quality of care" but she was completely mystified by this.)
Other things happened, such as being alone in a room at night over a weekend with the door closed and being unable to operate the nurse call button. Or being in a ward with a deranged patient who was going round each bed trying to get into each one and (again) being unable to operate the call button. These still fill me with dread when I recall them nearly two years later -as does the uneasy realisation of how dependent on a little lump of plastic I became.
Going to the toilet is an activity that seemed to occupy a lot of time in hospital (what a terrible thought that is, isn't it?) There were times when I couldn't go (not because of any medical reason but because it was shift change time) and times when I wet the bed. That didn't happen because of any lack of control but because I was trying to use a urinal bottle unaided or, at least once, because a nurse took twenty minutes to get one. Unless it's happened to you, it's impossible to appreciate just how humiliating it is to have the bedclothes pulled back and to have someone help you out of urine-soaked pyjamas.
For the first few weeks, I was unable to use the toilet to defecate and so I had to be suspended, in a hoist, over a bedpan. This was acutely embarrassing, particularly when someone opened the curtains. The sense of returning normality when I could be wheeled over a toilet was overwhelming. There are some things that you can only appreciate when you are deprived of your ability to carry them out.
It wasn't until I returned home, over nine months after entering hospital, that I found a way of wiping my own bottom. Until then, I had to wait until someone was around before I could go to the toilet. Again, this is something that is horrible and can't realty be explained in cold words.
To be plucked from a situation of almost total control over your life (I was, after all, in a very well paid job and had a stable life-style) and placed in a situation without control over even your basic bodily functions is unimaginable unless you have experienced it. There were a number of occasions where this powerlessness was acute. For example, I was being given a MRI scan but my involuntary movements were making the image fuzzy. Rather than asking what I could do to help, the doctor said something like "here's an injection to help you relax". When I woke three hours later (!) I was annoyed but acutely aware that I had lost control of my life.
I've mentioned "shifts" and that recalls other things (like very early starts to days that seemed to last forever) that institutionalised me. Why am I so concerned?
Bear in mind that I am a 45-year old person with a disability who went to a special school. At that time, there were two futures - a gleaming one working and living independently or a gloomy one spent in some isolated institution. I fought hard, much harder than most people, to achieve independence and to lose it was very frightening.
Immediately after the operation, when I was completely paralysed and bed-bound, Vic tells me that I told him I thought it was "all over" for me. Even much later, when I left hospital, a "kindly" social worker mentioned respite care at a Leonard Cheshire home and I thought "what's happening, has all my effort been wasted - am I going to spend years in an institution despite a lifetime of hard graft?" I know that Jean will fight mightily hard to avoid anything like this happening to me.
Beyond proving to Jean that there's still life in the old dog, this has been to major reason for my remarkable recovery - I want to remain as independent as possible ahead of everything else.
The fight back has been and continues to be very hard...
Jean and I have fought together. Most of the time, it seems
that the "professionals" were encouraging me to accept
my state and were amazed at each step I made. About two months
after the operation, a counsellor arrived by my bedside. I
started to talk about support I'd need when I left hospital but
she said her role was to encourage me to think about how to cope
with my disability. I sent her away with a flea in her ear.
My other statement records my continued fight to have sufficient physiotherapy. One weekend, Jean and I used the parallel bars in the gym. Rather than congratulating us on our initiative, we received a "telling off'.
Indeed, we received almost no encouragement to re-adjust to normality. Occupational therapy seemed to be a complete waste of time - we never discussed how I could do anything beyond them giving me a useless implement for wiping my bottom. Whenever I left hospital to go to the shops, the pub or for a meal out it was met with amazement but no one ever said, "well done". Until recently (this is nearly two years after I first entered hospital) I became anxious when Jean left me alone. I still don't feel confident enough to go shopping on my own but I have been to London on my own although only because someone was meeting me. Remember that I spent many years living independently and worked abroad for considerable periods.
The long-term impact of the events of the last two years should not be minimised - my quality of life (and that of Jean) has been very substantially reduced.
I'm really keen to hear what you think of this. Please email any comments to: firstname.lastname@example.org