It was a cold November day and I went off surfing on my own to Highcliffe, a beach on the south coast. I managed to catch a few waves, but noticed I was struggling to get to my feet. The strength in my arms seemed to be fading. After quite a short session I decided to quit and go home. I made my way up the hill from the beach to the car. I found it very difficult to turn the key to open the car door, let alone peel off my thick winter wetsuit. As I warmed up, I began to get my strength back and drove home wondering why I had felt so weak.

From that day on I gradually became weaker and weaker. I worked in a public transport garage as a store man, and the lifting of heavy vehicle spares was all part of a days work. I remember asking my sixteen year old apprentice to help lift a minibus prop shaft onto a shelf that was about head high. Imagine my embarrassment when I could hardly lift it above my head and he had managed to get his end up on the shelf with ease. I made my excuses and told him, I wasn’t feeling great. I hoped he believed me, but he probably thought, “what a wimp”.

I thought that I may be suffering from stress or had some ‘cold type thing’ that was making me feel out of sorts. I decided to pay my doctor a visit, especially now as my eyesight had started to become blurred. The doctor examined me, like they do, and came to the conclusion that I had a virus. “Great”, two weeks off of work just before Christmas to have total rest. If this was all it was, just a virus, then what a result, “Merry Christmas everyone”, especially my workmates.

However, from that point on my health went downhill fast. Apart from the general weakness, I had blurred and double vision, I slurred my speech like someone who had a few too many sherberts and worst of all I had trouble swallowing. This meant every time I took a drink, instead of running down my throat it would resurface through my nostrils. This was the same when I ate, but the food was generally coughed back up. This was all very unpleasant and quite scary. My next visit to the doctors drew the same conclusion, just a virus and nothing that could be done. I was told to rest and let it run its course. But I continued to deteriorate and eventually my Dad took me back to the doctors and said that we wouldn’t leave until we found out exactly what it was. This time it was a different doctor that I saw and he spotted straight away that something was seriously wrong. Before I knew it, I was on my way to Southampton General Hospital. This was quite frightening, as in my thirty years of life, I had never spent any time in hospital. On top of this, I was worried as my wife was out and didn’t know what was happening. My mum was looking after our daughter and she had to track my wife down and let her know.

When I arrived, I was taken to the medical ward to be assessed. Doctors from the neurological wing came to run some tests. On the 20th of December 2000 I was diagnosed with a disease called Myasthenia Gravis. It is a rare condition which is characterised by fluctuating, sometimes fatal muscle weakness. It is an auto-immune disease and the problem occurs when the body manufactures antibodies to attack its own receptor sites in the mistaken belief that these sites have become harmful to the individual. The neuro-muscular junction becomes damaged, so that messages from the nerve cannot get through effectively to the muscle resulting in limited use. Any muscle or group of muscles can be affected and exercise or repetitive use of the muscle, weakens rather than strengthens. Often, the first sign is a weakness in the eye muscles resulting in drooping eye lids and double vision. Also the muscles used in talking, swallowing or chewing are frequently involved. The voice tends to become nasal, and during conversation, can fade until almost unintelligible. If the condition becomes severe, the weakness is constant and if a crisis occurs, you may have difficulty in breathing and become gravely ill. At present there is no medical cure, but with careful balancing of drugs, and in appropriate cases, a thymectomy (removal of the thymus gland) and antibody treatment, many of the symptoms can be effectively alleviated. Apparently I had classic symptoms, and the doctors diagnosed my condition very quickly. They inserted a needle into my arm and injected me with a drug called neostigmine. For a few minutes my symptoms improved.

I still had to go through some unpleasant tests though. One of the tests was a scan where they injected me with a dye, then put me through a scanning machine that looked like a large polo mint. Being injected with the dye was very strange as it made me feel very warm and can make you feel like you have wet yourself apparently. I also had to have an electric shock test to check that my nerve endings were working. I must admit that I didn’t enjoy it too much.

I was admitted to the Stanley Gravesen neuro ward where I was shown to my on-suite room of four. When I say on-suite I mean the toilet was across the passage, but it was connected in a way - I could see it. My Dad, who had driven me to the Hospital, had gone home, but my wife Beryl was there to help settle me in for the first night of my stay. When we chatted, we realised that the Lord had protected us from the worry of what the symptoms might have been. It hadn’t even crossed our minds that I could have a serious illness. Before we knew it I was in Hospital and had been diagnosed. It meant we were able to deal with the situation right away. Later on that evening, when my wife had left, I could not swallow at all. The nurse had to try and put an NG Tube down my nostril into my stomach so they could give me the medication I needed and to be able to feed me. This was a nightmare because I couldn’t swallow and help the tube go down, so I just choked. It felt as though the tube was going down the wrong way into my lungs. It also made me produce lots of saliva which I could not swallow, so I had to keep spitting it out. The nurse eventually gave up; I just could not get it down. By this time it was very late and I had kept the whole ward awake with my choking, for which I apologised in the morning. This was fast turning into the worst night of my life. Thoughts started to go through my mind like, why me, I’ve got a wife, an eight month old beautiful baby girl, a good job and a mortgage to pay. I reached for my bible and it fell open straight to Psalm 116. It read:-

I love the Lord because he hears my prayers and answers them. Because he bends down and listens, I will pray as long as I breathe! Death stared me in the face, I was frightened and sad. Then I cried “Lord save me!” How kind he is! How good he is! So merciful, this God of ours! The Lord protects the simple and the childlike; I was facing death and then he saved me. Now I can relax. For the Lord has done this wonderful miracle for me. He has saved me from death, my eyes from tears, my feet from stumbling. I shall live! Yes, in his presence, here on earth! In my discouragement I thought, “They are lying when they say I will recover.” But now what can I offer Jehovah for all he has done for me? I will bring him an offering of wine and praise his name for saving me. I will publicly bring him the sacrifice I vowed I would. His loved ones are very precious to him and he does not lightly let them die. O Lord, you have freed me from my bonds and I will serve you forever. I will worship you and offer you a sacrifice of thanksgiving. Here in the courts of the Temple in Jerusalem, before all the people, I will pay everything I vowed, Praise the Lord.

I had to read this a few times through to absorb it properly, and although physically I still felt terrible, I had a real sense of inner peace. I was then able to sleep for a while and by morning I was able to swallow again. The doctors came to see me and told me that I would need an operation to remove my thymus gland, which got me slightly worried.

I thought, as this was a rare condition, they just want to experiment on me. I eventually came round to the fact they had my best interests at heart and there was no conspiracy theory going on. I was then pumped full of drugs and started to have some treatment. I had to have a plasma exchange. They stick a needle in one arm from which they take your blood. This then goes into a machine which separates your blood from your plasma. Then it mixes your blood with the donated plasma and is then pumped back into your body via a whacking great needle in your other arm. This process usually takes two to three hours. I am thinking of claiming American citizenship as the plasma is all donated by Americans because they are a B.S.E. free country. Throughout my stays in Hospital, I had about thirty of these plasma exchanges, so as you see I must be part American by now. I then had I.V.I.G. treatment, which are good antibodies that are put into your body via a drip. This is a five day course taking eight hours a day. This meant I was going to be in Hospital on my baby’s first Christmas. As it happened, I talked the nurses into the fact that I was well enough to go home for a few hours on Christmas day to have dinner with my family before returning for another eight hour bash on the drip. This was a real blessing for all the family.

Whilst settling in for some sleep, I heard a heart monitoring machine beeping every now and then. I asked the nurse why this was and she told me that an elderly man called Lesley round the corner had contracted the Hospital bug M.R.S.A. during his stay and wasn’t expected to make it through the night. All I could do was to say a prayer for him. Five days later when I was discharged for the first time, he was still hanging on in there. Maybe for a good reason. “Praise the Lord.”

During that first ten day stint in Hospital I met a man called Colin. He was one of the many that I kept awake on that first night of choking. He was a very pleasant well spoken man who was there for a suspected stroke. He told me that his wife had had a very bad car crash whilst on her way home from visiting him. She walked away from it totally unharmed and the police said they couldn’t believe that she wasn’t killed. He said something like “someone must have been watching over her that night”. This gave me a good opportunity to share a bit about my faith and how God had given me this inner peace to help me deal with the situation I was in. We had a good conversation that night and when he was being discharged, he said to me and my wife “keep your faith”. This was of great encouragement to us. When he left, it struck me on how illness is a great leveller and how God can use these situations. If I had seen Colin out of that environment, what would have been the chances of us having a chat, him an older well spoken man and me, younger, with a London accent and my past set in the rave and warehouse party scene. “God breaks down barriers.”

It was a great relief when I was finally discharged after showing good signs of recovery. During my stay, the food was good, the nurses were great and I couldn’t have been left in better hands.

Towards the end of January my health had deteriorated again and I was readmitted for another week. I got quite upset. I couldn’t believe I was back in Hospital again. “Why Lord? What’s going on?” After being given Psalm 116, I thought that one stay in Hospital and a belly full of drugs was going to do the trick. How wrong could I be? More treatment followed in the form of plasma exchanges and my steroid level was increased. The problem was that they couldn’t perform the operation I needed on the amount of steroids that I was taking, so the steroid level had to be lowered gradually until my operation date in April. During this stay, a young lad came round to speak to me. He was from the room around the corner. I can’t remember his name but he came across as quite a depressive sort of person. He told me that he had epilepsy and something else which I have forgotten, and said he didn’t have long to live. This urged me to ask if he believed in God. He said no and didn’t really want to hear what I had to say, but just went on to tell me about his problems. He told me about how an ambulance crew had let his Dad die because they had turned up too late. This young man was very bitter with life and really needed some help. All I could do at that time was to give him some advice about bitterness and how it can destroy your life. The only person you hurt through feeling bitter about someone or something is yourself.

Again I recovered enough to be discharged and was very happy to get home to my family who I missed very much.

As my steroids decreased, I took a turn for the worse again towards the end of February. This time I had quite a bad experience and it had to go down as the worst night of my life. It was late Saturday evening and I was getting very weak. My Dad came to pick me up to take me to Hospital as my baby girl, Zoe, was in bed asleep. Because it was late I had to be admitted through A&E. I was seen very quickly but had to wait for a vacant bed in the medical ward as the neuro ward was full. I told my Dad to go home as it could be a long wait. About three o’clock in the morning I was moved to the ward. By this time I was in quite a bad way. I couldn’t swallow, see properly and could hardly talk, let alone move around.

I couldn’t get comfortable on my bed as my weakness stopped me from moving even slightly. My neck muscles were so weak that my head just flopped to which ever side I was leaning. I have had a taste of what it is like to be paralysed, and my heart goes out to people who have to live their lives like this constantly. I eventually managed to get a little sleep until I was woken at about six o’clock by two nurses. They went on to try and put an NG tube down me but could not do it. I tried to explain that I couldn’t swallow and that I needed an injection, but this was difficult as my speech was slurred and being a rare condition, and the fact the nurses were not trained in this, they got frustrated and thought I was being awkward. They told me that the pharmacy would not be open until ten o’clock that morning and just left me there to deal with the choking which they had started off. The only good thing was I was given a suction device to deal with the saliva that I couldn’t swallow. I could not sleep after that and I was desperate to see my wife. At about nine o’clock a doctor came to see me. He realised straight away how ill I was and told the nurses to get medication right away. Once I’d had the medication, my health slowly picked up and I was moved to the correct ward.

I went on to have yet more plasma exchanges in this two week stay. I was really missing my little girl as we were advised that it was probably best not to bring a baby onto the ward as there is always a risk that she could pick up an infection. I also had to spend mine and my wife’s birthday in Hospital as well as already having spent Christmas there.

A man called Charles was moved into the bed next to mine and it turned out that he had spent twenty five years as a missionary in the Congo. Charles’ minister visited one day. His name was David Mathews and he told me about a group called Christian surfers. I couldn’t believe there was such a group and found the Second Day magazine that he left me very interesting. I really enjoyed our chat and afterwards he and my parents prayed for me. I decided that I would become a member of Christian Surfers U.K. as soon as I was on my way to recovery. That Sunday Charles and I attended the Hospital chapel together and when we arrived back on the ward, Leslie, the man that nearly passed away over Christmas asked if we had had a good time. I said “yes, you should have come with us”. He agreed, so I told him to try and get himself down there next week. To my relief I was soon discharged from Hospital again.

The reason that I kept on falling so ill and going back into Hospital, was that my steroid level was too high to have the operation that I needed. Every time the dose was lowered I went downhill. The answer to this problem was to lower the steroid dose, but go as an outpatient for two plasma exchanges a week right up until my operation which was due in April. The operation was to remove my thymus gland which sits right down the centre of the rib cage. This meant cutting down the centre of my chest, sawing my rib cage straight down the middle and clamping it open to remove the offending article. The thymus gland only serves a purpose in the first few years of a child’s life. It is the child’s immune system until they have built up their own defence. In my case, the thymus had become swollen and was producing antibodies that were attacking my own body.

April had come and I was back in Hospital for the big opp. The problem was that it fell on my daughters’ 1st birthday. Even more annoying was that after one night in, the operation was cancelled. This was due to the fact that they didn’t have any spare intensive care beds for my immediate recovery after the operation. Two weeks later I was back in for the operation, and while I was down to theatre I remember the anaesthetist telling me she was mixing me up a cocktail and asking where I would like to go. I told her that the Caribbean would be nice. The next thing I knew, I had woken up in the intensive care ward with all sorts of wires and tubes hanging off me. It felt like I was in a dream, but was certainly no Caribbean. It was very nice to see my wife and parents there though.

The nurses came over to give me an x-ray of my chest. It revealed that there was trapped air in my chest cavity and it was pushing my left lung down causing slight shortness of breath. The doctors gave me a local anaesthetic and cut a hole through my flesh between my ribs in my side so that they could insert a plastic tube to release the air lock. It was a good job that I was still in a dream state as I watched and felt every snip of my flesh. Once I had made a good recovery, I was then moved to a high care ward for about three days where I spent most of that time attached to a monitoring machine. I then had my drain tubes removed, which was very painful and uncomfortable, and was then sent to a normal ward to fully recover. After about ten days in all, I was discharged with the feeling that this whole nightmare was now over. How wrong could I be?

At first all was well, but as before it didn’t take long for things to get worse. This time it was really bad as my limbs were severely affected. At times I could hardly walk, bathe, clean my teeth or even feed myself. I spent most of my time lying in bed at home with my wife Beryl bringing all of my meals to me. At night I couldn’t even move enough to get comfortable. Once again I was admitted to Hospital. As I walked from the car to the ward I got so short of breath that I had to sit and rest for a while. It was a relief to finally make it to the ward. One night on this visit, I tried to get out of bed to use the toilet but my legs gave way and I collapsed onto the floor. As I called out for a nurse I struggled to breathe properly. This panicked me slightly, but I was soon rescued and I managed to get my breathing under control by relaxing and staying calm. The doctors couldn’t do a lot for me this stay as there were not enough trained staff to give me the plasma exchange that I needed. I was discharged once again after about ten days, but on the way out of the hospital I collapsed on the car park stairs, and my wife had to find a wheelchair to get me to the car.

Things became very bad at home. I literally lived in my bedroom and in July 2001, I was back in Hospital. I desperately needed plasma exchange but still couldn’t get it at the General as they were then doing it for emergencies only. The crazy thing was that if I didn’t get one soon my lungs would get weak and I would become an emergency. After a week and a half my doctors decided to send me to the John Radcliff infirmary in Oxford where they are experts in Myasthenia Gravis, and I could get the treatment that I so desperately needed. I was taken there in an ambulance and after spending all that time stuck in a hospital bed while the sun was shining it was a very enjoyable trip. The Hospital was quite old but the nurses were very nice.

The following day I started my course of five plasma exchanges. These were done in a different way in this Hospital as they had an older machine. Instead of having a needle in each arm, they put one five inch tube into your main vein in your groin. This was very painful and when it was in, it was very uncomfortable as it had to stay in throughout the course of the treatment. The doctors also increased the medication that I was taking. The day after my first plasma exchange, whilst in the bathroom, my legs gave way and I fell backwards. I was so weak that I couldn’t break my fall so I hit the hard floor with my head with a thump. Pins and needles ran down both arms and my head throbbed. The trouble was that I was so weak that I couldn’t even move, so reaching the emergency pull cord was impossible. I just lay there and called out for a nurse. I praise God that I wasn’t knocked out, and had only grazed my head and not split it open, as this situation could have been a lot worse. The nurses soon heard my shouts and wheeled me back to my bed. My legs were so bad that the next few days I had to be wheeled to the toilet.
I have tasted what it is like to lose ones dignity. It’s quite upsetting.

After three plasma exchanges I started to pick up well but got a line infection in my groin and couldn’t complete the whole course of five. The doctors then decided to give me I.V.I.G. treatment for eight hours a day for five days. The care I received at Oxford was excellent.

I met a man called Andrew one evening in the television room. His whole body went into spasms and shook quite violently at times as he had Parkinson’s disease. He also had underlying MS. I really felt for this man. He told me a little about his life and how he had split from his wife and was trying to cope living on his own with this disease. The really upsetting thing was that the only thing that kept him from killing himself was his three daughters which he obviously loved very much. I shared with him a little of my faith and how God helps me in these bad times. He did listen, but like many people with problems, he just wanted to talk and tell me about his situation, so I was happy just to listen to him. The next day he was moved to the bed opposite me. Later that day he stood at the end of his bed and started to have convulsions, so I pulled the emergency cord by my bed for him. Nobody came, so I got off my bed and went and found a nurse. By the time we got back he had collapsed. He laid there crying in a puddle of his own urine. More nurses came and they shut the curtains around his bed. One nurse brought along a crane to winch him back on his bed. Although a similar incident of collapse and rescue had happened to me in the bathroom, I felt more upset for him than I did for myself. My only explanation for this was that it was God’s love for this man flowing through my heart.

In this world that we live, we are told to look after number one, but this can lead to looking inwards and selfishness. This can then lead to self pity, then possibly depression. There were a lot of people that I saw in Hospital who were a lot worse off than myself, but praying and thinking about these people kept me mentally strong and gave me a peace that can only come from God. Being at Oxford was very difficult as my wife was only able to visit three times. However on one of these trips my parents and Zoe all came up for a visit and we were able to leave the Hospital for a few hours and have a picnic by the river. Two and a half weeks after arriving in Oxford I was back on the mend and being discharged. I said my goodbyes and left Andrew with some of my uneaten fruit. This would be my final stay in Hospital. I left excited at the fact that I was going on holiday very soon after. We took a wheelchair on holiday with us, and although I was still very weak, I didn’t use it once in the whole two weeks, praise the Lord. I even managed to get in the sea towards the end of the holiday, and had a quick surf on my bodyboard!

This whole experience wasn’t very pleasant, but I learnt to trust the Lord and seek the positive rather than the negative things. After reading Psalm 116 on my first night in Hospital, I thought that healing was just around the corner, but time after time I found myself back in Hospital. God works to his own plans and timing, but we have to trust him and not get too discouraged when it doesn’t happen in our timing. Even though I was physically weak, I felt that God, through my faith in him, kept me mentally strong which I feel is very important in the hard times that we all face living in this world.

When you find yourself in a bad situation, which everyone does at some point in their life, put your trust in God, try to stay positive and look outwardly and not inwardly, as this will only leave you feeling sorry for yourself and could lead to depression. The way that I dealt with this was to pray for other patients that were worse off than myself. There is always someone in this world that will be worse off than you, so praise the Lord for what you have.

I learnt in a real way how blessed we are to be living in England with its National Health Service. It’s all too easy to complain and moan, but in reality we are very rich here and are looked after very well. I have had thousands of pounds worth of treatment, Hospital stays and a major operation. If I had been living in a third world country then this disease would have killed me. We should be thankful for every day God gives us.

Looking back in hindsight, the worries that I had about the future, especially the financial needs of my family were unnecessary as God has more than provided for us in every way. In Matthew 6:34, it says “Therefore do not worry about tomorrow, for tomorrow will worry about itself.”

I praise God for a loving family, both mine and my wife’s, who were also sustained by the Lord, as they made coping with this whole experience a lot easier for my wife and I. I praise God for my wife Beryl, who has been a rock throughout and my daughter Zoe who gives me day to day fun and enjoyment. I also praise God for the extended family, the Church, whose prayers and encouragement were very much needed.

I thank the Lord for planting this faith within me as without it I don’t know how I would have coped.

As I write this, in early 2003, I have now had this illness for just over two years. Since being discharged from Oxford Hospital in August 2001, it has been a long hard struggle with good and bad days. I am not yet back at work, but all is going very well and I am going from strength to strength, although I still have to have regular check ups and blood tests. My medication is slowly being reduced until I get to a minimum maintenance dose, so I still have a little way to go until I am back to full health, but praise the Lord I’m getting there.

Ben