Four out of five people.

Four out of five people.

1

Chapter 1

Hello there. I’m William, well, Bill to most of my friends. It’s the early nineteen sixties and I’m going to tell you about the arrival of the three ‘p’s in my life - pain, paralysis, and Paul. I suspect many of you may be thinking, here we go, another disaster story. Well you’d be wrong. This is a story of extraordinary events, well extraordinary to me and my wife, Joyce, or Joy as she prefers to be called. But first I need to go back a few years.

I was a Civil Servant, working in London and living in rented accommodation in Kingston. Not the greatest commuter route, but I usually managed well but then one day …

‘You OK darling, you’re going to be late,’ Joy’s singsong voice floated to the bedroom. She, as usual, was already up and making my sandwiches no doubt. ‘I know. You’re right. I should be up but I am feeling rather under the weather.’ Those words stopped Joy in her tracks. She lay down the butter knife and came bustling into the bedroom, her petite figure swaying with each step. She was so graceful. All four foot ten inches of her. She stretched up and put her dainty hand on my forehead.

‘I don’t think you have a temperature.’ She felt under my ears and jaws. I can’t feel any swollen glands. Where does it hurt?’ Her violet eyes scrutinized my face, showing a look of genuine concern.

‘Well that’s the trouble, it doesn’t hurt. In fact quit the opposite. I have very little feeling in my hands and feet. Its like they’re asleep. They’re tingling a bit, perhaps they’re just taking longer to wake up than my brain.’

joy scowled at my levity. ‘Did you sleep awkwardly?’ She inquired.

‘Not that I’m aware of but then I was asleep so it’s hard to tell!’ I smiled at her, trying to eliminate the worry lines that were crowding her face. ‘I’m sure I’ll be fine once I get going. I’m just getting old.

‘Hey, older maybe, but not old. You’ve probably been using the tandem too much. I told you that you should ease back into it after that tumble you took a few weeks ago. Anyway, if you’re not better by tonight, you’re going to the doctor. You could have concussion or something,’ she suggested helpfully.

‘I think it might have appeared sooner than this if it was due to the bike crash. I’ll be fine. It’s improving as we speak.’

Joy looked at me with suspicion and said. ‘Doctor. Tonight if its not better. I’m serious.’ i nodded in agreement because Joy was a formidable opponent and I never ignored her if I could help it. Also, it was very unusual for me to feel unwell like this. . Little did I realize that this was the beginning of the end of my life as I knew it.

Eventually, I managed, with Joy’s help, to dress myself and to get the train to work. She’s found a pair of hiking sticks we had used in our more adventurous days and I was able to walk and maintain my balance. I cannot explain how terrifying it was to be unaware exactly where my feet were and to find my hands would not do what I willed them to do. Gradually though, this was to become my norm.

At lunchtime, my feeling below par was even worse. I felt as if I was in a hail storm, with the hail just striking my hands, arms, feet and legs. I asked for permission to make a personal call and rang the doctor. I described my symptoms and the receptionist said the doctor would see me as soon as I could get to the surgery. My boss could see I was struggling and fearing I was going to spread contagion round the office, sent me home immediately.

The doctor was as good as his word and called me into his office within two minutes of my arrival.

‘Mr Wright, please sit down.’ I unsteadily stumbled to the chair and he put out a protecting arm. ‘Well, what have you been up to?’ ‘Hello Doctor, sorry for the rush appointment but I woke up like this today. I was feeling as if my brain was in a fog and my feet and fingers were tingling or numb all over.’

‘Would you mind if I just do a few tests? ‘

‘Will it hurt?’

‘Probably not, given your symptoms.’

‘Good point.’ I was trying to keep some levity in the conversation but my attempts seemed rather lame. For once I was worried. I’d always enjoyed the rudest of health.

‘Can you manage to get up on the couch?’ It took an enormous effort but I got there. The doctor removed my shoes and socks and told me to relax. ‘Right now. Can you please grasp my hands as hard as you can while I try to pull them away’ His hand were liberated almost immediately. Two more repeats gave the same results. ‘Now, can you try and push my hands away from you. I performed better on that test. However, his face remained inscrutable. ‘Now we’re going to do the same with your feet. First try and push my hands away. Good, good’ he mumbled at my pathetic attempt. ‘Now I’m going to push down on your feet and I want you to try and pull your toes towards you.’ It was a bit like trying to swim against a torrential flood. His hands were going nowhere.

‘OK Mr Wright replace your shoes and socks and come back to the chair. Can you try and walk in a straight line and don’t hold on to anything’ I managed my shoes and socks but the bending caused a sharp pain in my back. ‘What was that?’ He asked urgently and scribbled down my reply.

i struggled back to the seat on rather unsteady feet. I was feeling complegtely drained. ‘Tell me Mr Wright, have you had any other signs or symptoms over the last few months. Anything at all unusual even if you don’t think it relevant. I racked my brain. ‘I can’t think of anything unless you consider having to have new glasses. About 3 months ago, I had a spell of blurred vision which the optician said was down to needing a new proscription.’

The doctor added to his notes in that unreadable script that I was sure was a required qualification for anyone wanting to become a doctor. ‘Have you had a fall or hit your head at all?’

‘Well, a couple of months ago , we had a near miss on the tandem and I came off. However, afterwards the bike was in much worse shape than I was.’

The doctor scrutinised his notes. Well Mr Wright , you clearly have some neurological disturbance and I think you should see a specialist to get a proper diagnosis. We have a renowned centre in London. They should be able to give you a diagnosis pretty quickly. I’d rather be cautious than give you some aspirin and tell you to rest. I’ll get an ambulance to transport you now.’

‘Is it that urgent?’ I was worrying what Joy would say when dinner got spoiled because I was late.

‘Better safe than sorry. Wait in the reception and I’ll call straight away’

‘Thanks Doctor.’ I’ll let you know how I get on’

Several hours later, a Mr Reed , consultant neurosurgeon was giving me the benefit of his vast experience. Prior to this I had been prodded and poked. I’d had a cerebrospinal fluid sample taken - not something I wanted to go through ever again. It felt like I’d been hit by a lightening bolt in my spine. I’d also had X-rays and blood tests. I felt like a pin cushion. ‘Right, Mr er, er, oh, Wright? I won’t beat about the bush. I haven’t got all the test results back yet but your history and your X-rays , the issue with your vision and this sudden onset of these new symptoms is clearly indicative of a disease called Multiple sclerosis.’

Suddenly the ceiling and walls were collapsing in on me and I desperately wished my little bundle of unending optimism was here with me. ‘Joy’ I said, which must have seemed rather incongruous. ‘I need to call my wife, Joy. Mr Reed nodded in agreement. ‘A good idea. tell her to bring you some clothes and the usual bits and pieces you’d need for a stay in hospital. It will probably be about ten days.’ Only this morning I was feeling a bit under the weather and now I was going to be incarcerated in a sterile environment for almost two weeks!

When Joy arrived, you looked like she’d packed for every eventuality that might occur on a two week vacation. ‘Are you stopping long?’ I joked.

‘Well, a little while at least, my waters broke when they told me your diagnosis!’ Joy was 9 months pregnant and almost overdue.

‘I hope I’ve remembered everything you will need but now I have to go back to maternity. I’ll get word to you when the baby comes.’ Joy, always feet on the ground and ready for anything.

‘I’m so sorry to do this to you,’ I said rather pathetically.

‘Don’t be so silly. Now you can worry about me rather than worrying about yourself. Apparently, that’s not good for you in your condition.’ She blew me a kiss and left the room with her ‘ready bag’ which had been ready almost since she got pregnant. You see, that had been a miracle in itself.

We couldn’t believe it when she got pregnant, we’d only been married fourteen years! Fortunately, her pregnancy, apart from the dreadful sickness at the start, has been relatively uneventful. The only real problem we’d encountered was choosing a name for our expected bundle of joy. My wife had decided the baby would be Beverley or Beverley-Ann if it was a girl. In fact, since she had been the only girl in a family of five siblings, she knew she was having a girl. Finally, she would have someone on her side. I, of course, did not disagree, I had long ago learned that Joy brooked no argument once she’d made up her mind. Now, however, with plenty of time on my hands, hands that were pretty useless to me and would not do anything I tried to make them do, I started to wonder what we would call the babe if it dared to be born a boy. Beverley was not happening. The poor child will never be able to hold up his head! No, it had to be something old. I didn’t want any of these new american names like Scott. It also had to be something with some elegance which could not be shortened to something dreadful like Edward and Eddy, Ted or Ed. I thought for some time and eventually lighted upon the name Paul. Perfect. Now I just had to steel myself to tell my beloved. Unless of course it was a girl.

So I was ready with my contribution when the nurse popped her head around the door and told me that it might be some time. Apparently, it was usual with first labors for it to take a long time. Several hours later, during which I laid wondering if the pain I was feeling was anywhere near as bad as the pain Joy had be feeling another nurse entered with a wheel chair. I thought I was being taken off for more tests when she made the announcement that mother and baby were both doing fine and she was there to take me to see them. It wasn’t until I entered Joy’s room and saw a plump little bundle wrapped in a blue cotton blanket that I realized I had a son, Paul.

We all stayed in hospital for several days. Paul was quick to latch on to Joy’s breast and was growing by the day. His platinum blond hair, getting thicker and longer and his piercing blue eyes completely filled my heart with love and pride. I was a father. Unfortunately, I wasn’t sure what sort of father I would become as I was gradually informed more and more about my disease.

I had lived in Egypt until I was 10 years old, my father having been in the Royal Fusiliers. Apparently, the little they did know about the disease at the time seemed to suggest that where you lived before puberty could affect your likelihood of getting the disease. Eygpt was one of those places that was not good if you had the other predisposing factors, most of which they did not understand. However, I was in the early stages and my disease seemed to be remitting, so much so, that when Joy and Paul were discharged, I was too.

In our son’s first year came the summer of our content. Paul was a solid little chap and his baby blue eyes remained just that. Just like his mother’s in fact. That summer was scorching hot for a change and we sweltered in our post-war, pre-fab made of corrugated iron. We were sure the milkman would find us one day all melted into a large pool. Paul, however, seemed to love the heat and bloomed, showing no sign of wilting. In the photographs taken by this proud if perspiring Pa, showed our baby delighting in the joy of living. With very little prompting I could be seen sharing my snaps with anyone who would look. I was perfectly tedious on the topic.

Despite the pleasure I took being with my infant, I had to return to work and soon it was 1 A.D; one year After Dunking Paul at the Tower of London in the Chapel of St Peter ad Vincula; a right I had inherited from my father who had been one of Princess Elizabeth’s bodyguards before she grew up and became Queen.

I was acutely aware that I had slowed down a lot, the partial paralysis and excruciating pain I suffered, being hard to ignore or to overcome. The Civil Service had allowed me much license and supported me tremendously until I was forced to admit defeat and take premature retirement. I thought this was my lowest ebb as I gazed at my office, the familiar desks and well worn chairs, the foot-scuffed path to the canteen. As I left through the outer gates it hit me that this would be the last time in my life I would say good-night to the gate keeper.

By now the nerves in both my legs were giving me extreme trouble such that an operation was imperative. The doctor had explained that the procedure. a laminectomy, had been around since the 1800’s but that it was experimental for MS. Since they knew little about the disease or its causes, the symptoms seemed to suggest that pressure on the spinal column could be a contributory factor to the progression of the disease. So that’s why I became a guinea pig. I was told that normally it gave relief to four out of five patients.

Meet Mr 5!

Not only was I paralysed from the waist down after the operation but shortly after release from hospital the paralysis advanced to my shoulders and down through my arms and hands. It was then that I realised, this was my lowest point - I would never again lift my golden haired boy in my arms or trot behind him in the garden as he chased a butterfly or the neighbour’s cat.

I wallowed in my misery for all of two hours but I had forgotten Joy’s limitless gift for optimism. She quickly invented ways to help me re-engage with the world, including rigging a Mechano pulley attached to a typewriter and a wooden stick, which I held between my teeth and with new found enthusiasm, started to write to everyone one I knew and many more who I didn’t. Her boundless creativity has meant that I have a full life, painting, writing and acting as a message service for the local doctor. My boy continues to grow and although I watch him from a distance, he always rushes home from school to tell me his news. Just like my wife, he is my Joy. Whenever I’m feeling under the weather, I just say a prayer for these two blessings.

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© Lesley-Jane Eales-Reynolds

Four out of five people.