Rev Michael Hore – coping with motor neurone disease: 2012

First published in Gridiron, the magazine of St Laurence Church, Upminster in August 2009

Why me?

At the end of last year, Fr Michael was diagnosed with Motor Neurone Disease. This was a great shock for him and his family. Everyone who faces such news struggles to come to terms with it. The family began a journey that continues to test, not only their physical health, but also their emotional response.

It is the nature of a priest such as Fr Michael to find himself also reflecting on the spiritual and theological significance of his predicament. Although such thoughts can be deeply personal and not easy to share, Fr Michael has decided to make occasional comment on his reaction to his health in Gridiron. It is hoped that this will help others to reflect upon their own health issues and perhaps to come to terms with misfortune.

Anyone who is diagnosed with an illness such as Motor Neurone Disease, which is incurable and normally terminal, can be forgiven for asking Why me? MND strikes about one in 50 thousand people every year. Those are long odds; they are roughly equivalent to the chances of winning the jackpot in the Lottery for a person who plays it every week in the year.

Personally, I would rather win the lottery! And yet, I have not found myself seriously asking the question Why did I get MND?

I know it is a question people have asked on my behalf. “He is a Christian. He has served God and the Church for the bulk of his life. He is not a notorious sinner. He has done nothing that deserves punishment on that scale. Why him?”

On the few occasions that I have ventured the question Why me? in my prayers, the answer that seems to come back to me is Why not? Christians are not immune from the risks of human life. They are not exempt from suffering. Most diseases strike in a random fashion; it is a lottery.

It would be an infantile faith that demanded that present wellbeing was given or denied according to past behaviour. That is not the way God works. A mature faith recognises that the good are as likely to fall ill as the bad, and the bad are as likely to win a jackpot on the lottery as the good.

Indeed, the truth behind this is deeper than one of chance. God’s greatest revelation to us is in the gift of the incarnation – his entering into the world in Jesus Christ. Jesus, although he was God’s Son, was not wrapped in a cocoon of safety. It is part of our incarnational theology to believe that, in taking human form, God embraced every risk, pain and problem experienced by humanity. Indeed, Jesus would be no saviour if he could not suffer our pain.

It would be a bizarre understanding of the Christian faith if Jesus’ followers demand that, by Jesus’ death on the cross, they should be immune from the pains and misfortunes of human life.

So the question Why me? is simply not worth asking. I have developed MND because I have been unlucky – as have about one in every 50 thousand people.

The question that is worth asking is, Having got MND, how do I respond?

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First published in Gridiron, the magazine of St Laurence Church, Upminster in November 2009

What is healing?

At the end of 2008 Fr Michael was diagnosed with Motor Neurone Disease. This disease is not only an assault on the body; it is an assault on the mind. As someone who tries to think theologically, Fr Michael has had to try to make sense of his circumstances. In a series of occasional articles he reflects on various aspects of his illness. In this article he asks whether he has the right to look for a miracle of healing.

Each Sunday in church we read a passage from the gospels. Many of those readings give an account of Jesus healing someone who was considered incurably ill.

The history of the church is scattered with stories of people who have experienced miraculous cures. Those who have experienced such miracles are justified in maintaining that the healing work of Jesus continues.

Could I not also experience a miracle of healing? There is, at present, no medical cure for Motor Neurone Disease. Miracles are not commonplace (we would not consider them miracles if they were); do I not have the right to hope for a miracle?

Scholars have long searched to understand Jesus’ healing miracles. It is clear that Jesus considered this an important part of his ministry. It is therefore reasonable to ask what theological significance they have.

There are several answers to that question.

One answer is to look to the Old Testament. Here we find a picture of the Kingdom of God in which “the eyes of the blind shall be opened, and the ears of the deaf unstopped; the lame shall leap like a deer, and the tongue of the speechless sing for joy. [Isaiah 35]” When Jesus heals the blind, the deaf, the lame or the dumb he is therefore demonstrating that the Kingdom of God is ‘breaking into’ the world now. Miracles of healing are therefore a demonstration of Jesus’ work to establish the Kingdom of God.

But there is another, simpler answer to the question of Jesus’ healing ministry. Jesus knew a truth that we also know from experience: that suffering and hopelessness can cut people off from God. It often happens today. The next question to Why am I ill? is often How can I believe in a God who allows this? Jesus heals the sick to restore their relationship with God.

When I was diagnosed with Motor Neurone Disease I wondered how it would affect my spiritual life. I wondered if I would suffer from depression. I wondered if I would give up and ‘throw in the towel’. I was also worried that it would damage my belief in God.

To my surprise, I have found that none of these has happened. I am not depressed. I am determined to carry on. Most importantly (for me) I have not given up my faith in God or, indeed, found it in any way diminished.

Of course, I would love to be healed (and unashamedly pray for it). But if it is true that Jesus’ purpose in healing the sick is to restore their faith in God, I must be thankful that my faith has not been damaged.

I count that, in its own way, as a small miracle of healing.

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First published in Gridiron, the magazine of St Laurence Church, Upminster in February 2010

Should I hate being ill?

Towards the end of 2008 Fr Michael was diagnosed with motor neurone disease. Even for someone who has spent the best part of his life reflecting on the human condition, Fr Michael still struggles to make sense of his illness. In a series of occasional articles he reflects theologically on what it means to be ill.

I think I must be my Specialist’s star patient. He has asked me to speak to a group of post-graduate students who are training to research motor neurone disease. He wants them to recognise the human element in what could otherwise be a detached and academic subject.

The relationship between the person and the illness is important for the patient too. I have been aware of a great danger within myself: to treat the MND as if it was an alien invader attacking an otherwise healthy body.

This is actually the way that the people of Jesus’ time often understood illness. All manner of medical problems were thought to be caused by evil spirits that invaded the patient. The spirit lived in the person’s body like a parasite. There was nothing actually wrong with the person except the possession by the spirit. If the spirit could be exorcised, the healthy person re-emerged well and unharmed.

Today we know that my MND is not caused by an evil parasite taking up residence in my otherwise healthy body. But there is a danger of treating it as if it were. If I did believe that my MND were an outside ‘agency’, I would be filled with anger towards it, I would rail against it, I would treat it as an ‘object’ of hatred.

To view my MND in this way would be to add a mental illness to the physical. For it would do me no good to be filled with such bitterness and disappointment about my misfortune.

MND is a disease of my body. It is not an alien invader; it is part of me. I am not ‘me plus a disease’; I am ‘me with a disease which is a part of me.’ I am a complete person which includes my MND.

This is how Jesus related to people. He reached out to them as they were. He did not separate off their disability before he was prepared to love them. We see this in his encounter with Samaritans, lepers, the woman taken in adultery.

Jesus loved them for what they were and as they were. And he taught them to love themselves in the same way.

I do not think I could cope with my MND if I did not believe that God loves me, disease and all. He does not love the me I ought to be and hate the MND that has invaded my body. He loves me as I am – the total package.

As such, I have to love myself – not loving the me I ought to be and hating the MND. I must learn to love myself as I am.

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First published in Gridiron, the magazine of St Laurence Church, Upminster in March 2010

The imitation of Christ

In about 1418 one of the most influential of all Christian books was written. The author was a German monk, Thomas à Kempis; the book is The Imitation of Christ.

The principle behind the book is that, in order to live as authentic Christians, we must model our lives on Christ. We read in scripture that Jesus cared for the poor and outcasts; so must we. Jesus challenged the hypocrisy of power; so must we. Jesus ministered to the sick and disadvantaged; so must we. Jesus lived a life of obedience to his heavenly Father; so must we.

By imitating Christ we grow closer to God. It is a very practical and positive spirituality. It brings a sense of fulfilment, happiness and assurance.

But what if your life seems to offer only negative experiences? What if serious illness makes each day a struggle? What if you have to accept the loss of your dreams? What if you find it difficult to share in the optimism of Jesus’ message?

In as much as most of us would seek to imitate Christ, we do so because to ‘be with’ Jesus is a good place to be. We feel the warmth and the encouragement. But if we are serious about ‘being with’ Jesus, we must remember that Jesus also suffered anxiety, loss of freedom, struggle and doubt. And on the cross Jesus experienced a catastrophe worse than any of us can imagine.

As I seek to imitate Christ, I have a growing realisation that what has to be important to me is the struggle of his last week. I need to meditate on how he faced his trials. I need to observe how he maintained his dignity, did not descend into anger, and continued to radiate a love for everyone. If I can do this, it means that nothing of importance is lost.

And I believe in the resurrection.

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First published in Gridiron, the magazine of St Laurence Church, Upminster in May 2010

In control

Since I became ill, one of the hardest lessons I have had to learn is to accept help.

I imagine that part of the problem has been my profession. For all my working life I have been a ‘giver’; I have seen it as my calling to help others and to make sacrifices on their behalf. I can no longer do that to the degree that I would like. I have had to learn to be a recipient rather than a provider. That has been tough.

The Acts of the Apostles reminds us of Jesus’ teaching: It is more blessed to give than to receive. I would want to reply (forgive my impertinence), “Yes, but it is harder to receive than to give.”

Yet I know that my discomfort at being a receiver is wrong. There are two reasons for this: one theological, the other personal.

All Christians are receivers. Our salvation depends, not on what we do, but on what Jesus did for us on the cross. To claim that, as human beings, we are somehow in control of our own destiny is to deny the need for Jesus. It is as if God’s love counts for nothing in our lives.

Being ill, I am very aware that I am not in control of my life; I rely on the love of God. But this ought to be the realisation of all Christians. We are all receivers.

The more personal reason for being a receiver is that other people want to be givers. I have been overwhelmed by the kindness of others. This (of course) includes my family, but it extends to friends, colleagues and complete strangers.

By showing support – even in such small acts as opening a door for me – people are offering a kindness that ultimately (whether they realise it or not) has its source in the love of God. We should all allow people to follow that instinct.

I still find it difficult to accept help. I must learn to see that the support offered by others is to be accepted joyfully, not reluctantly.

Perhaps there is a lesson here for all of us.

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First published in Gridiron, the magazine of St Laurence Church, Upminster in June 2010

Who am I?

How does society judge me? What value does it put on me as an individual? What is my status in the eyes of the world?

Generally we are judged by what we do. This is not surprising. It must be buried deep in our human psychology. One person is judged to be of value because they are important to the community, or have a lot of money, or have a high profile. Another person is considered to be of low value because they have nothing to give to the community.

This is a game that I have played. When I first became ill I was determined that I was going to continue working as a parish priest as long as I could. Functioning as a priest defines who I am. It says that, despite being ill, I am still of value.

But what happens when you begin to lose the ability to do the things you used to do? This is happening to me. I can now walk only a few yards. Visiting people in their homes has become very difficult. Leading worship in church is a struggle. I rely on people to help me to do even the simplest of tasks.

Does this make me less of a person? Am I now of limited value? Have I lost my status?

This is not just my problem. Many people face it for many different reasons: the loss of a job, a failure to make the grade, the break-up of a relationship, the limitations of age. We are all susceptible to the judgement of society that defines us according to our usefulness.

Society has got it wrong.

We are not important for what we achieve. We are important simply because God loves us. And God does not judge us according to the standards of the world.

The realisation of this simple truth changes everything. I was surprised to find that, with a gradual physical decline, I did not feel that my cherished status was slipping from me. It is as if God has stepped in to reassure me that I am still me. I am valuable because I am valued by God. As my personal future unfolds, that is all I need to know.

It is surely a message for us all.

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First published in Gridiron, the magazine of St Laurence Church, Upminster in July 2010

Out of the mouths . . .

I had been waiting for this, or something like it, to happen.

We had arrived at the hospital for a regular appointment. As is normal these days, I was in a wheelchair; Rosalind, my wife, was pushing me. We went to the nurses’ station for the preliminary weighing and blood pressure check. The nurse, ignoring me, looked over my head at Rosalind. “Will he be able to stand to be weighed?” she asked her.

Rosalind and I laughed about it later, dreaming up caustic comments I could have made to the nurse. But there is no point. She was only doing her job; let us assume she had a senior moment.

The truth is that a serious illness deprives you of many abilities you once took for granted. Although I can still speak for myself, there are many things that I can no longer do. I have given up driving the car, I cannot walk more than a few yards, I struggle to make myself a cup of coffee. My physical activity has become limited.

It would be foolish to claim that these problems make no difference. Firstly they limit what I can do for myself. But, perhaps more importantly, they often change the way in which people relate to me – like the nurse in the hospital. I am also aware that my problems can affect the way I feel about myself; there is a risk of seeing myself as an inadequate, limited, even defective person.

But not all the messages are negative. I recently welcomed a party of schoolchildren, aged about seven, to look round the church. They had no foreknowledge that I would greet them from a wheelchair. They were not in the slightest fazed. They showed neither surprise nor sympathy. They accepted the wheelchair as just a type of normality. They followed me as I trundled round the tour of the church. They came up to me and asked me questions. They laughed at my jokes. They listened to my explanations. My ‘condition’ was of no significance to them at all.

I was grateful to those children. It seemed to me that, in their attitude, I was given a glimpse of the love of God.

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First published in Gridiron, the magazine of St Laurence Church, Upminster in September 2010

Let me hope

I was much taken by this quotation from Andy Ripley, who played rugby for England in the 1970s. He died on 17th June this year after a long battle with prostate cancer.

He had been asked to write a book for the Prostate Cancer Charity. He wrote this in the foreword:

“Dare we hope? We dare. Can we hope? We can. Should we hope? We must. We must, because to do otherwise is to waste the most precious of gifts, given so freely by God to all of us.”

I find that I can hope for many things. I know that many of my hopes are likely to be forlorn, but that does not stop me hoping. When you are ill you will find many straws to grasp at.

I hope that the doctors’ diagnosis of my illness will turn out to have been mistaken and that I am actually suffering from something less serious.

I hope that medical science will make an unexpected discovery that will provide a cure for my complaint.

I hope I will astound my doctors by getting better on my own, which they all say is impossible.

I hope for a religious miracle. I know that such miracles are rare, but I believe that God sometimes brings healing beyond expectation. Why should I not hope that will happen to me?

I am enough of a realist to know that such hopes are probably unfounded. Yet I can continue to hope against hope.

But there is another way to understand hope that is entirely realistic and God’s free gift to us all.

For a Christian, hope is knowing that, in the end, God is to be trusted. God has a purpose for my life. Although I cannot understand why my life has taken the course it has, it remains directed towards God. Hope is knowing that, ultimately, my future is to be with God, and the path of my life is under His care.

Hope understood in this way I can believe with total confidence.

Of course I continue to pray for an extraordinary or miraculous cure (why should I not?) But my true hope resides in my simple trust in God.

If I were to stop hoping, I would be finished.

“Dare we hope? We dare. Can we hope? We can. Should we hope? We must.”

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First published in Gridiron, the magazine of St Laurence Church, Upminster in October 2010

It’s not just me

Being ill has its dangers.

If you are ill, people offer you care and sympathy. They make sacrifices for you. They show real kindness. It is right that you should accept their support graciously.

But the danger is that illness can make you selfish. It dominates your life. Centring your life on your own problems, you can forget how your illness afflicts the people around you.

A serious illness affects not just the patient; it affects also the close supporters. Therefore the quest for healing needs also to embrace family and friends.

The New Testament gives us many stories of healing. It also shows us the anguish of those who care for a sick person: the ‘Leader of the Synagogue’ who risked professional suicide in pleading with Jesus for his sick daughter (Matthew 9:18 ff); friends who brought a paralysed man to Jesus, and had to lower him from the roof to avoid the crowds (Luke 5.18 ff); the ‘daughters of Jerusalem’ who wept as they watched Jesus being led out to crucifixion (Luke 23: 27 ff).

Perhaps the most poignant of such stories is that of Mary, Jesus own mother, who stood with him at the foot of the cross (John 19:25). Although she was a bystander she felt Jesus’ pain and distress almost as if it were her who was being crucified. She suffered because she loved him. And her suffering was magnified by the knowledge that there was nothing she could do to relieve his pain.

Those who are ill need to be reminded that Jesus did respond to his mother’s pain. Despite the enveloping agony that must have turned his mind inwards, he found the strength to look after her needs: “When Jesus saw his mother and the disciple whom he loved standing beside her . . . he said to the disciple, ‘Here is your mother.’ And from that hour the disciple took her into his own home.”

It is sometimes difficult for a person who is seriously ill to remember the pain that others share with them. It is difficult to turn away from their own needs and follow the example of Jesus’ care for his mother. That must be a model and an inspiration.

And the people who surround someone who is ill need to remember that God’s love extends to them too. Their prayers for the sick person, whether they intend it or not, will be heard by God also as prayers for themselves. Healing, in its broadest sense, is offered to us all.

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First published in Gridiron, the magazine of St Laurence Church, Upminster in December 2010

An ordinary life

What do you do if your life suddenly collapses around you?

What do you do if you lose your job or your loved ones? What do you do if the doctor tells you that you have only months to live? What do you do, as was my case, if you are told that you are suffering from a progressive and debilitating illness?

Francis de Sales was a sixteenth century French saint. The story goes that he was playing cards with a group of friends when the question came up: What would you do if you had to die next week? One friend said that he would spend the time with his family. Another would spend his last few days in debauchery. Another would make his peace with God.

Frances

de Sales’ response to the question was different and unexpected. He would carry on doing exactly what he had been doing. His impending death would make no difference to the manner of his life.

I like that response. I came across it only recently but discover that it mirrors exactly what I have been trying to do. Although I was not given only weeks to live, to be diagnosed with motor neurone disease does seem like a sentence. How was I to respond to it? The friends sitting around my card table might offer despair, anger, bitterness.

I took a conscious decision to carry on doing what I had always done. As time has gone by, I have developed physical disabilities that have limited some of my activities. But as much as possible I have attempted to continue my role as a parish priest. I want to maintain an ordinary existence for I firmly believe that it is in the ordinary things of life that we meet God.

St Francis de Sales has something else to offer: he was a man of enormous patience. Although, like anyone else, he wanted to know God’s will for him, he did not demand that God answered his questions immediately. He believed that, rather than demanding instant answers, it is better to allow God to speak in His own time. We learn more by being patient.

I have found this sound advice. When you suffer a catastrophe, the temptation is to change your life in a precipitate way. This does not always help. It might even make matters worse. The best solution is to commit yourself to waiting on God.

As St Francis wrote: “Have patience with all things, but chiefly have patience with yourself”.

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First published in Gridiron, the magazine of St Laurence Church, Upminster in February 2011

Where’s my dignity?

One of the things I hate most about being ill is the loss of dignity.

This applies to other people too: those who are old and have lost their independence, people who are made redundant, the homeless, victims of disaster.

Personally, I hate having to be so dependent on other people. I need help to get dressed in the morning and to shower at night. I can no longer drive the car. I am inclined to drop food in restaurants. I need people to support me in church.

There are so many things that now restrict my life. I depend on other people more and more. In my darker moments, these are the things that undermine my sense of dignity.

I would find this a great burden if it were not for two great gifts.

The first is the love and kindness I receive from family and friends. They do not treat me as someone who is gauche and incapable. Their love cancels out my loss of dignity. I feel valued again.

The second is my Christian faith. Being ill might have provoked a crisis of faith. It has not done so in me. Instead, I am more aware of the presence of God by my side. My list of physical inadequacies might grow by the month but, with each new disability, the power of God’s love matches the power needed to maintain my fundamental dignity.

It is inevitable that I will feel that I am losing my dignity. But love and faith really do have the power to remind me what I am truly worth.

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First published in Gridiron, the magazine of St Laurence Church, Upminster in March 2011

Darkness and light

How do we cope when life gets difficult? How do we face the dark days, when despair seems more natural than hope and life veers towards pointlessness?

I do not find it easy to be seriously ill. Most of the time my spirits are reasonably high; I know that my blessings outweigh my problems. This is the attitude of mind that I try to maintain; it is better for me and better for the people around me.

But there are days when negative thoughts dominate. I know what it is to feel sad, afraid, despondent and defeated. Inevitably I go through days of darkness. When that is the case, how should my Christian faith help me to cope?

Early after my diagnosis, a priest friend of mine counselled me to meditate on Christ’s suffering. That, he said, would put my own problems in perspective and make them easier to bear. I frankly do not find that very helpful. I find no consolation in knowing that Jesus suffered more than I do. I find that advice as unhelpful as the observation that “there’s always someone worse off than you are” – as if I would feel better because someone else is suffering.

But the suffering of Jesus does have something to teach me. It is not that I find encouragement in his pain. It is that Jesus’ suffering teaches us something about the nature of God.

In the understanding of many religions, God is remote from the world. God lives in Valhalla or on Mount Olympus in isolation from the problems of the world. Jesus shows us that God is not like that. In Jesus, God shares our every problem. He knows our sadness, fear, despondency and defeat.

To meditate on Jesus tells me that God is by my side. He embraces me, not only on the sunny days, but in the darkness that all but smothers me.

God has been good to me. Most of the time I can be positive. I can share a joke and enjoy the things of which I am still capable. But I also have my dark days when nothing seems good. Even then I know God with me. Because God in Jesus shared my every experience, my darkness is never dark enough to yield to His light.

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First published in Gridiron, the magazine of St Laurence Church, Upminster in April 2011

Made for what?

Being ill does have its compensations.

One of the things that I have come to realise, which I didn't fully appreciate before, is how fundamentally kind people are. Encountering someone who is ill really does seem to bring out the best in people. I have not met a discourteous person in my wheelchair; on the contrary, members of the public seem to fall over themselves to offer help.

The kindness ranges from shoppers who leap to open doors, to ambulance workers who clearly break the rules in order to make my life more comfortable. The acts of kindness also embrace family, friends and members of the church. Sometimes I have been moved to tears by the kindness people show me.

So what, as a theologian, do I now make of original sin?

This is the teaching maintained by the church for some fifteen hundred years that maintains that human beings are fundamentally sinful. There is a darkness within us that propels us towards doing evil. This dark core of sin is what causes wars, murder, violence, and all social ills. It also clouds the relationship between human beings, leading to indifference and confrontation.

So how does original sin account for the extraordinary kindness that I have received since becoming ill?

The truth is that the church has tended to dwell too much on sin. Desmond Tutu recently wrote a book titled Made for Goodness. His thesis is that, being made in God's image, we should strive to find the goodness of God within us. This is an important message that redresses the negative theology of original sin.

Observing the many people who have offered me help I would be inclined to say that we are made for goodness. And if they are subject to original sin then my experience is that they keep it well hidden. I have learnt a lesson: the church needs to concentrate more on goodness.

But let us not dismiss the theology of fifteen hundred years on the basis of one man's experience in a wheelchair. We still have to explain all the wars, the inhumanity and the social ills of the world. It would be nice if simple kindness could overcome all our problems. Unfortunately salvation demands more than kindness.

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First published in Gridiron, the magazine of St Laurence Church, Upminster in May 2011

Who I really am

I have no wish to be ill. If I were a saint I would no doubt bear my misfortune with stoic acceptance. Alas, I am unlikely ever to find my name on the Church's list of saints. Unlike the truly holy ones, I find my illness burdensome, undignified and (sometimes) embarrassing.

It has also taught me things about myself that I did not want to know. Any serious illness challenges your estimation of yourself as a person.

I used to think of myself as a strong character, a positive thinker, coolheaded in a crisis and not given to irrational responses. I really believed myself to be a cross between Bulldog Drummond and Bertrand Russell.

What I have discovered through being ill is that I am quite a different person.

I try to be positive about everything, but I now know that I am no stranger to moments of irrational darkness and real fear.

I find that a crisis leaves me in a panic. I have fallen over a number of times, which leaves me trapped and unable to get up. Rather than treating it with icy detachment, it is an experience that leaves me in distress and takes me several days to recover.

I always considered that I was self-sufficient and didn't need the help of others. I now discover that I cannot cope without other people – Rosalind, my wife, of course but also many others. I can no longer hide behind my pride.

If I am honest, I preferred the image of myself that I lived with most of my life. But of course it is good to learn home truths. Because of my illness I am more aware of my real personality, even if every new discovery seems to represent a weakness.

I have also made another discovery. It does not matter how weak I find myself to be, how self deceiving, how vulnerable. God loves me for what I am. There is no need for me to create a false image. God sees the reality of my personality – and loves me anyway.

I suppose for that discovery I should be grateful to my illness.

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First published in Gridiron, the magazine of St Laurence Church, Upminster in June 2011

The value of prayer

When I was a student in the late 60s, some of my evangelical friends had a particular preacher and writer whom they idolised (perhaps a little too much). I confess that I cannot now even remember his name but my friends hung on his every word, devoured every new book he published, and yearned for him to come to the University to lead a mission (which he did).

It was then announced that he had been diagnosed with terminal cancer. There was no medical cure.

My friends decided that, where medicine could not cure, prayer could. They and thousands like them around the country offered fervent and persistent prayers for their beloved pastor. They were certain that God could not fail to hear faithful prayers offered by faithful people for a faithful servant of the church.

The cancer took its inexorable course, as its victim knew that it must. He died peacefully – lamented and loved and, I believe, fondly remembered.

Although not on quite the same scale, I am aware that many people are praying for me. I very much appreciate this; I believe strongly in the power of prayer. The prayers of others supplement my own meagre entreaties.

But what should we pray for? Unashamedly, I pray for a medical cure for my illness. I pray for a day when I can clamber out of my wheelchair and resume all the activities I used to take for granted. I pray that my damaged nerves, which are the cause of all my problems, will repair themselves to the confusion and amazement of my medical team. I pray for a simple cure. Why not? I believe that miracles are possible.

But unlike my evangelical student friends, we must not fool ourselves. The eradication of the disease is not the only way that God answers our prayers.

Illness can be a pernicious thing. It can subvert the mind and undermine the foundations of our humanity. Spiritually it can turn us away from God and destroy any sense of optimism or hope in the future. Being ill can have effects that go beyond the physical.

I count it as at least some sort of cure – and the answer to prayer – that none of that has happened to me. I have kept largely positive and hopeful. My faith has remained secure; indeed, ironically, being seriously ill has, I believe, deepened my spiritual insight.

I hope that people will continue to pray for me. I hope they will pray for a miraculous cure. But I hope also they will pray that my humanity and spiritual life remain whole.

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First published in Gridiron, the magazine of St Laurence Church, Upminster in July 2011

What can I do?

I do not find it easy to be disabled. One of the hardest things to bear is the discovery that, as time goes by, I can do less and less.

I have always seen my ministry as a priest as being essentially one of doing. Whether it is visiting people in their homes, helping out with practical tasks in the church or standing at the altar to lead services, I have always wanted to be active and vigourous. But these are precisely the things I can no longer do.

I know that I am not the only person to feel the frustration of restricted activity. It comes to many of us when we are ill or simply when advancing age saps our energy. It is one of the hardest things that many of us have to bear: to find we cannot do the things we once took for granted.

As activity has always been central to my vision of the priestly ministry, and as my physical powers have decreased, I have not been able to avoid those dark thoughts that whisper to me that I am no longer of any use – to other people, to the Church or even to God. I have found this realisation difficult to face.

God speaks to us in unforeseen ways. A few weeks ago I had a visit from Bishop Stephen, our new Diocesan Bishop. Knowing that I could not attend the Deanery Synod which he was to lead, being held that morning, he paid me a personal visit. I did not share my dark thoughts with him but somehow he picked up on them.

The job of a priest, he said, is not about doing but about being.

It is strange how sometimes a simple sentence can change your outlook. I shall reflect on what he said and try to work out what it means for me. I will certainly carry on doing as much as I can but I will also try to value what it is within me to be a priest.

This is surely not an insight simply for me. We live in a world that values people too much for what they do. Bishop Stephen is right: God loves us for what we are rather than for our physical (or, indeed, mental) capabilities.

This applies particularly to those who are disabled, whether through illness, age or for some other reason.

What is important about us is not what we do but who we are.

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First published in Gridiron, the magazine of St Laurence Church, Upminster in August 2011

Treat me as I am

I came across this story in a book that I read recently*. It was told by a lady called Angela who was profoundly deaf. She told the story of a dream she had had in which she went to heaven and met Jesus. She and Jesus talked for some time and she said she had never experienced such peace and joy. "Jesus was everything I had hoped he would be," she said. "And his signing was amazing!"

Angela had borne deafness as a severe disability all her life. In her dream, rather than heaven being a place where disabilities are healed, it is a place where disabilities are accepted and perfected such that they are no longer a problem. Jesus talked to her perfectly through her disability – in sign language.

This has made me think and given me some tentative thoughts about the nature of disability. These thoughts apply to all disabilities (perhaps yours): physical, mental and social.

When (and, of course, if) I get to heaven, what will be the nature of my particular disability – my motor neurone disease? This may seem a silly question but, as we shall see, it has something to say about how we understand our disabilities in life.

Conventional wisdom teaches us that in heaven all disabilities are repaired. The old become as they were when they were young, the deaf no longer have to sign their conversations, and I would no longer need a wheelchair or someone to help me brush my teeth.

Angela's story tells us something different. It tells us that, in the presence of God, our ‘disabilities’ simply cease to be a handicap. Just as, according to traditional theology, Jesus bore the wounds of crucifixion when he returned to his Heavenly Father, so we carry with us our ‘disabilities’ to heaven. There they no longer inhibited us.

If Angela's way of seeing things is true, it has something to say about the way we treat disabilities – and disabled people – in this world.

If the conventional wisdom is true – that in heaven all disabilities are shed – then it must also be true that, in this life, disability should be seen as a weight laid upon an otherwise ordinary person, like a sack of coal dropped on the shoulders of a marathon runner.

If, on the other hand, Angela's dream is nearer to the truth, the implication is that our disabilities must be counted as part of us, not something separate or extraneous. In a strange way (for maybe this is a strange thing to say) God's love for us embraces our disabilities as part of who we are. It is not a case of God loving the healthy person that we should have been, but hating the disability from which we now suffer.

To put this personally: I hate to be seen as a person burdened with motor neurone disease, for that defines me by my illness. I am who I am: a complete person whom illness has made somewhat different. The MND is now a part of who I am; it is part of the ‘me’ that God loves.

All I ask is that you treat me in the same way.

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First published in Gridiron, the magazine of St Laurence Church, Upminster in September/October 2011

The God of small pleasures

We can all look back and point to things that have given us the greatest pleasure. Many of those things I can no longer do; my illness has deprived me of the ability.

I would love to be able to play the piano again (only better). I would enjoy another visit to the ancient sites of Rome. I would like to relive the Christmas dinner that I once had when living in Africa that included roast peacock and fresh mangoes. I would want to repeat many of the experiences I have had with my family, and try to do some of them better.

It is not only past events; the list of things I yearn still to do in my life is far from exhausted. Some are absurd: I have always wanted to go into space (and did once apply – unsuccessfully – to be an astronaut). Most are more reasonable – revisiting things I did in the past: I would love still to be able to visit art galleries, attend concerts and go to the theatre. I miss the walks in the countryside, visiting new places, being more active in the ritual of church services. It is only when you are no longer able to do these things that you realise how pleasurable they were.

This is not an experience unique to me. Many people share my frustrations – through illness, misfortune or old age. How do we cope when we find that the pleasures we once took so much for granted are no longer possible?

At least part of the answer is to take pleasure in smaller things. I realise that this might sound shallow and rather sickly (Pollyanna comes to mind) but it is a thing I am trying to do.

Recognising that what I can experience is now rather limited, I really do discover that I can take a surprising amount of pleasure in, for example, a pizza eaten in a local restaurant or a visit from an old friend. I enjoy a good book more than I used to. I take real pleasure in my gin and tonic on a Sunday morning after church. And I find that my family gives me a richness of pleasure that more completely fills my life than in the days when I had other distractions.

This may be a small solution to a big problem: the loss of former pleasures. I struggle with it, of course, but I find that it works.

All pleasure is a gift from God. We must accept what he allows us; there is no value in demanding what we cannot have. And the pleasure that God gives us can be found in small things as much as a great.

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First published in Gridiron, the magazine of St Laurence Church, Upminster in November 2011

The Death of Ambition

Since I became ill I find that I no longer have ambition.

Ambition has always been important to me. When I was about five years old I decided that I wanted to be an engine driver. Although this was not an ambition that my father welcomed with much enthusiasm, it was a goal that gave me a sense of direction for a few of my childhood years. Simply having an ambition gave me a sense of purpose.

The ambition to be an engine driver did not last very long. It was replaced by a succession of other hopes and yearning. At various times in my life it has been my ambition to play football for my school, to own an astronomical telescope, to understand the mystery of girls, to drive a sports car and to visit the Antarctic. Most of these ambitions have never been realised. But what I understood very early was the value of having an ambition; it gave a sense of drive and purpose to my life.

Now, because I am ill, ambition seems superfluous. I cannot hope to climb Everest and no one will now put my name forward to be a bishop (not that I ever really wanted to be one). I will never be asked to play Rachmaninov's C minor Prelude in the Tea Rooms in Bath, nor will I ever visit the rock cut churches of

Ethiopia

. The only ambitions that are left to me are too private and inward-looking to be put on paper. In fact, they are not really ambitions at all.

Ambition is no longer important to me. I have changed the habit of a lifetime and freed myself from ambition. I have discovered that I do not need ambition to give me a sense of purpose.

This discovery is important, not only for me, but for those many other people for whom life's horizon has closed in. People who are old, tired, housebound or ill will have discovered this: that the hope of a foreign holiday or a new car, if that is no longer possible, cannot now excite their dreams. That is how it is for me.

But there are other things that give purpose to life. This may seem simplistic, but I have been surprised by the way that God keeps me going. In fact, I now wonder whether my ambitions of the past were actually a block to mask where God was directing me.

I realise now that my life must be about what God wants, not what I want. This may be a realisation born out of necessity but, in itself, I count it as no bad thing.

I can't help wondering, nevertheless, whether it would be possible to get a wheelchair up the side of Everest.

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.

First published in Gridiron, the magazine of St Laurence Church, Upminster in December 2011/January 2012

Can we suffer alone?

I have a serious illness but I am not the only one who suffers as a result. My motor neurone disease brings sorrow and disability also to those who care for me and those who are closest to me.

This is, frankly, something that I did not appreciate before I became ill. We all know that what we do affects those closest to us – our mood, our activities, our routines. But I was not prepared for the way in which my illness would draw those around me into the web of my own suffering. It is no longer just my illness; it is something that I cannot avoid sharing.

(Do I feel guilty about this? Of course I do – even though my rational mind tells me that it is in no way my fault).

This is a characteristic of all people who are seriously ill – and, indeed, anyone who becomes dependent on their relatives through age or infirmity. Those who care also share in the suffering.

In my case, my major problem is mobility; those who care for me are also restricted in what they can do and where they can go. I sometimes find it difficult to sleep; this robs those who care for me of their own sleep. Illness provokes strong emotions: uncertainty, fear, frustration; exactly the same emotions are felt by those who care.

This transference of suffering is one of the things I find it most difficult to cope with. Why should my illness be such a burden to other people? Why should they suffer because it is I who am ill?

I try to make theological sense of this, although I am not sure that I have been successful in my analysis. But it does at least make sense to me that, as a follower of Jesus, we recognise that – more than anyone else – Jesus suffered of behalf of other people. He freely took their suffering on himself. Vicarious suffering is at the heart of our faith. To look at Jesus on the cross reminds us that any of us might be called to bear the suffering of others. That makes sense to me, but it is an argument that does not entirely assuage my guilt, nor is it an insight that I can impose on others.

There really is no answer to this. We would be naive to think that it is a problem that is easily solved. But I suppose what it confirms is what in the past I might only have paid lipservice to: that love has to be for better, for worse, for richer, for poorer, in sickness and in health.

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First published in Gridiron, the magazine of St Laurence Church, Upminster in February 2012

Why or Where?

One of the wisest of all statements tells us that it is more important to ask the right questions and to find the right answers.

Anyone who, like myself, suffers from a serious illness is bound to ask many questions. Most of these questions will be Why . . ? questions: Why was it me who developed this disease? Why does such a cruel disease exist? Why are all my dreams and hopes so easily shattered?

Inevitably, some of these Why . . ? questions revolve around religious faith: Why does God allow this to happen? Why doesn't God cure me? Why doesn't God recognise my faith and protect me from suffering?

It would be dishonest of me to say that I have not asked those questions. I have asked the questions but have not found the answers. And the more that I ask the questions, the more I realise that they have no answers. The truth is that I have developed this disease because some people in the world do, and I could expect no special favours from God because that is not the way that God works. I would love a miracle cure (and I pray for a miracle cure – as I hope you do on my behalf), but I cannot demand special favours from the God who did not spare his own Son.

I must accept that the Why . . ? questions are simply not the right questions to ask. If the trick in life is to ask the right question, the question to ask is Where is God?

All religious faiths have a major problem. We believe that God is love and yet we see so much suffering in the world. It is not only a problem for people who, like myself, have a serious illness; it is the problem of suffering through natural disaster, warfare and famine. In all these instances the Why . . ? questions do not seem to help us.

The central truth of the Christian faith is that God is with this. This is proved in the Incarnation, but is also validated by the experience of so many people who have found that God does not leave them even in the time of suffering.

This is certainly my experience. Against all expectation and reason, God stays beside me even in my hardest experiences.

It is not a question of Why . . ? It is a question of Where . . ? – Where is God? Even in my darkest moments God has promised not leave me.

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First published in Gridiron, the magazine of St Laurence Church, Upminster in March 2012

The affirmation of life

My medical team has been trying to persuade me to fill in an official looking form setting out what I want to be done when I approach death. Fundamentally, they want my permission to withhold certain invasive treatments. On the face of it, this is a sensible thing to do. In practice, I have my reservations.

It surprises me that the form has provoked such a negative reaction in me. Before I became ill I would have said that everyone in my position should sign such a form. I always considered myself to be rational and resolute. But illness changes you.

A minor way in which this has happened has been what I expect my doctors to tell me. I always used to think that I would be like those people in 'stiff upper lip' films who say to their doctor, "Tell me the truth, Doctor; I want to know." For myself, I have modified the question: "Tell me the truth, Doctor, as long as it's good news; otherwise I don't want to know."

More important is the discussion that, from time to time, they try to initiate with me about death. So far I have always prevaricated. It is not that I am frightened of death, nor that within the context of my faith I do not think about it. It is just that, at the moment, I am more concerned with life.

It may seem strange (and it certainly seems strange to me) that despite my growing physical limitations I still relish life. I can still enjoy the present, cherish my memories and relish future events. Of course I am aware that death will come (as it will come to all of us), but I still feel that life is for living.

Of course it is important to plan for the worries of the future, but I will not do that if it distracts me from the joys of the present. These words of Jesus have taken on a richer meaning for me in recent months: "He is God not of the dead, but of the living." I want to concentrate on life while I still have it; I see that as a spiritual imperative. To be 'sensible' about death would be a distraction.

My attitude probably infuriates my medical team. It might also annoy many people, including many fellow Christians, who want to take a more practical attitude to their departure. I apologise to them; I am simply stating what I feel.

Of course the Christian life acknowledges death. But while I am alive, I will wholeheartedly embrace the life that God gives me – as much as possible without distraction.

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First published in Gridiron, the magazine of St Laurence Church, Upminster in April 2012

The God of the little things

"How are you?" asked an old friend who visited us a few weeks ago. I answered with the usual platitudes – not so bad, as well as can be expected, absolutely fine apart from the MND. This wasn't good enough for him. "But how are you?"

The truth of the matter is that it is not the grand sweep of my illness that troubles me most. I can cope with the big things. It is the little things that annoy me.

I accept with an ease that surprises me the gradual progression of the illness. I do not rail against my need for a wheelchair or lose my temper because I cannot turn over in bed at night. I am not rude to people because I can no longer preach a sermon without running out of breath or smash the furniture because I can no longer drive.

What annoys me is the little things. I can no longer feed myself because I cannot grip the knife and fork. If the telephone rings, I cannot reach the handset and answer the call. I am finding it difficult to switch the radio beside my bed on and off. I can no longer reach to scratch many parts of my body; if I have an itch, it has to be left to itch.

Perhaps in future, when someone asks me "how are you?" I should answer, "I have an itch in my right ear. Perhaps you could scratch it for me." That would do more for me than a visit to the specialist.

In musing on this, I wonder if I find a message about our religious life. We have a tendency to believe that our religious faith is about big things: the grand structure of theology, getting our liturgy right, understanding the Bible properly, the call to atone for our sins.

These things are, of course, important. But equally important are the small thing: the love which underpins our relationship with one another, the readiness to offer a helping hand, the warm smile that derives from our faith, an optimistic view of life, our tolerance of other people's shortcomings, showing friendship to strangers.

It is surely true that if we get the small things right, the big things will follow.

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First published in Gridiron, the magazine of St Laurence Church, Upminster in May 2012

Why be pessimistic?

I suppose, if you backed me into a corner and gave me a hard grilling, I would have to admit there is a lot in my life that I ought to be pessimistic about.

Everyone knows that MND is a terminal illness for which there is no cure. The symptoms are difficult: loss of muscle strength, increasing inability to look after yourself, in my case a difficulty in breathing unaided. This ought to be a pessimist's charter.

My medical team do not always help. There is an underlying pessimism about the way they treat me. They tend to shrug their shoulders too much and are given to saying things like, "you know, we really ought to talk about the future." They also have a marked inability to understand when I am joking, as if somehow humour is inappropriate for someone in my condition.

I suppose it is understandable. Medical specialist in most other disciplines sometimes see their patients cured. That is not the case with the MND medical team.

So, all in all, pessimism would seem to be the order of the day.

But if that is so, it must be that I am not playing the game by the rules.

I guess that, by nature, I am an optimist. That does not mean that I am silly about my illness – I know what it means to have MND. It is rather that there are other ways of defining optimism.

For me, to be optimistic means that goodness is still the dominant force in my life. I feel myself to be surrounded by the love of those who help me. Sometimes I find this overwhelming. I will not allow the dark shadows of my medical condition to obliterate the warm light of love.

For me, to be optimistic means that I still have something to offer as a priest and as a human being. This is what I committed my life to, and I find I can still do things that people value.

For me, to be optimistic means that I am still just as much a child of God as I ever was. That means that the purpose of my life is still woven into the purposes of God. I may not always understand exactly what that means, but I believe it to be true.

Should I be an optimist or a pessimist? As so often, it is a question of what we mean by these words. There are grave difficulties in my life; I am realistic about such things but not pessimistic.

And optimism is better.

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First published in Gridiron, the magazine of St Laurence Church, Upminster in June 2012

Where there's life . . . ?

Do I have any reason to be hopeful? Should hope be a part of my outlook on life?

Of course, it all depends what you mean by hope.

On one level, I have no hope left. Motor neurone disease has no cure. Research scientists have not yet even been able to establish what causes it; without that understanding it is very difficult to find a way of fighting it. For some reason the nerves carrying messages from the spinal cord stop working; and as the muscles get no messages from the nerves, they stop functioning too.

There is one drug that is known to slow the progress of the disease; it is called riluzole. (It costs £10 a day but I was put on it as soon as the disease was diagnosed). It is presumably doing me some good, but this drug brings no hope of a cure.

A research programme in

Italy

suggested that lithium would slow the progress of the disease. They would not prescribe me this drug as it had not been approved by NICE. So I bought it myself, effectively on the black market (it came in a plain grey package from

Vanuatu

in the South Pacific). A subsequent research programme conducted in London has shown lithium to be of no value at all. I have stopped taking it – another distant hope dashed.

I am not the only person to suffer from frustrated hopes when faced with a serious illness. Those who are ill will clutch at straws. This is what leads people to spend money uselessly or to put their faith in quacks. Hope is the most tenacious of all emotions. It is also the emotion that is most commonly disappointed.

For me, three years of treatment has brought not a glimmer of real hope that I might be cured. But that does not mean that I am a person without hope.

Hope can also be understood as the way in which we face up to life. To be hopeful is to relish what you have, look forward with a sense of anticipation and, as much as possible, to be positive in your attitudes.

Of course, these are things that cannot be achieved simply by an exercise of will (although positive thinking is important). For me, the route into a sense of hope is faith.

It may be that I suffer from an incurable illness. But I firmly believe that God loves me as much as he ever did, that my life is still of value, that life's journey still has the power to excite me with new revelations, and that my future is to be in the embrace of God. All that is what I choose to call hope.

So do I have cause to be hopeful? Yes, I do.

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First published in Gridiron, the magazine of St Laurence Church, Upminster in July 2012

The nature of God

Is God being unfair to me?

This must be a question that is asked by many people suffering from a serious illness. Why has God allowed me to get ill? Why is my illness so serious? This isn't fair of God.

Serious illness can also lead to other difficult and angry questions that put God on the spot. If this is punishment, what is God punishing me for? I've been a faithful Christian all my life; why doesn't God cure me? Does God really love me? Is God any use to me?

Anyone who has faced a serious illness will know that it is difficult to avoid asking this sort of question.

But there is something that lies hidden behind all these questions. I would suggest that the questions should not be taken at face value, for what really is at issue is What is God like?

What is behind the difficult and angry questions is a perplexity about the nature of God.

Is God the sort of God who takes pleasure in causing illness? Is God the sort of God who would make me ill in order to punish me? Is God the sort of God who is indifferent to my suffering?

It is undoubtedly true that serious illness makes you think about the nature of God. I have certainly pondered the question over the last few years and, although I cannot claim that everyone should come to the same conclusions, I feel I have learned something that is worth sharing.

I have never doubted that God is a God of love. He did not cause my illness – an illness such as mine has a purely physical cause found within the realms of medical science. I do not believe that a loving God would ever punish me in such a childish way, nor do I believe that God would withdraw his interest from me through indifference or embarrassment.

Contrary to such negative thoughts I am aware of the closeness of God's presence despite my illness. In fact, I firmly believe that no one understands my frustrations better than God.

Furthermore, I have a strong conviction that God can still make use of me as I am. I have something to offer, not despite my disabilities but because of my disabilities. I have spent my whole working life serving God to the best of my ability; becoming ill has in no way diminished my ability to serve. It has simply changed the nature of my service.

Is God being unfair to me? This is really a question about the nature of God. And I will continue to believe that God is a loving God despite the illness from which I suffer.

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First published in Gridiron, the magazine of St Laurence Church, Upminster in August/September 2012

When faith is weak

Someone asked me recently whether the experience of my ill-health had damaged my religious faith.

I think I surprised even myself by the speed and confidence of my reply. Being ill has not damaged my faith in God. That has simply not been my experience.

I then began to wonder why it is that I have escaped what seems to be a fairly common problem. Many people, when faced with disaster, find that they can no longer cling on to the concept of a loving God. Many people find that their lifelong faith cannot withstand the disappointments of life.

Having thought about my own experience, I can identify three reasons why my faith – perhaps surprisingly – seems to be secure.

First, I have always recognised that it is not easy to square the notion of a loving God with that of a suffering world. Indeed, this has been the subject of theological debate throughout the history of the church. But I would consider myself a pretty poor Christian if, in the days of my good health, I could have calmly observed the sufferings of others without it troubling my faith, but found it a problem only when the suffering became my own. In other words, the fact that it is me who is ill rather than my neighbour gives me no more reason to reject God.

The second point leads on from the first. Suffering is a fact of life. It is a given. But it is not caused by God – in the sense that He gleefully hands it out as a punishment or a test. This is a world (indeed a universe) where catastrophes happen. Earthquakes take place for well-understood geological reasons. The inherent imperfections in human nature can bring grief to families and individuals. Illnesses are generally caused by well-understood biological processes. If I recognise that the world is like that, I cannot blame God when I get ill.

The third point is about the nature of faith. Although we can engage in a rational debate about the meaning of faith (or lack of it), faith is not in itself rational. We cannot argue ourselves into believing that God exists, nor can any rational argument disprove the existence of God. Faith is a gift – I believe, given by God. It is not something that can be gained or dismissed at will. If God gives me faith, being ill will not destroy it.

My fundamental belief remains that God is good, that God has a purpose for my life, and that God loves me as an individual. Even if, in the future, my faith were to become more fragile, I hope I will be able to hold on to those truths.

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First published in Gridiron, the magazine of St Laurence Church, Upminster in October 2012

A step too far?

Praise the Towards the end of 2008 Fr Michael was diagnosed with motor neurone disease. Even for someone who has spent the best part of his life reflecting on the human condition, Fr Michael still struggles to make sense of his illness. In a series of occasional articles he reflects theologically on what it means to be ill.

I suspect that some of you will think that I have taken a step too far in what I am about to say. This is a matter that I have been turning over in my mind for some time. Is it possible to welcome the suffering of my medical condition as something positive?

Most people would rebel against this idea. How can suffering be good? What possible value can be derived from a disease like MND? How can something so awful be in any way ennobling?

At one time, I would have agreed with those people: nothing good can come out of the suffering of a serious illness. As time has gone by, however, I have begun to wonder. Suffering can offer something positive to our spiritual life.

I take courage to put these thoughts on paper after coming across some quotations from famous Christians who have had to face suffering in their lives.

Alexander Solzhenitsyn, the Russian author, underwent a spiritual awakening through his experience in the Gulag. "Years go by, yes," he wrote to his wife, "but if the heart grows warmer from the misfortunes suffered, it is cleansed therein – the years are not going by in vain."

Fyodor Dostoevsky, his compatriot, spent time in prison under sentence of death. He believed his life had been similarly transformed by his suffering as a prisoner: "It was a good school. It strengthened my faith and awakened my love for those who bear all their suffering with patience."

I had always thought that suffering was bound to be damaging to the spiritual life. I am sure that that is true for those who carry their suffering with resentment and a sense of injustice. But if suffering can be accepted – even embraced (which is a harder step to take) – it can become a positive force that leads to a more confident dependence on God. But the important thing is the acceptance.

Do not misunderstand me. I would far rather be fit and well than be a victim of motor neurone disease. But I must accept it is a reality; I have no alternative.

I cannot claim to be a uniquely spiritual person. But there have been times when my experience of motor neurone disease has allowed me to glimpse a serenity and depth of faith that I would not have thought possible.

Perhaps all this is not surprising. At the heart of our Christian faith is the God who won our redemption through his suffering on the cross. As we reflect on the meaning of the cross, can we not believe that, through Christ's suffering, we can transcend our own?

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First published in Gridiron, the magazine of St Laurence Church, Upminster in November 2012

Where reason fails

I want to respond to my critics – those who find this series of articles naive, infuriating or pompous. Actually, no one has voiced such criticisms to me. However, when I look into the mirror, I sometimes find in the image of myself a critic who accuses me of being simplistic. Am I really being honest about how my illness affects me? Is it reasonable, as I have often claimed, to be positive and upbeat despite being seriously ill?

Actually, God has been good to me. For reasons that I do not understand (I try to think about this rationally), I do not get depressed, I am fundamentally happy and I do not find that suffering from MND in any way undermines my faith.

Nevertheless, I am fully aware that many people who suffer disability or serious illness do carry their misfortune as a heavy burden. Who can blame anyone faced with personal disaster for feeling angry, abandoned and hopeless?

What can I say to such people? And what can I say to that part of myself that, while remaining optimistic and hopeful, appreciates the anguish that personal disaster can bring?

I need to acknowledge that, for a person who is in a dark place, clever words will never bring them into the light. Reason has its limitations; no argument can convince someone in despair or depression to put aside their problems. For emotions that lie beyond the reach of words, there needs to be a solution that lies beyond rational argument. Indeed, when the cruelty of the material world is the problem, the only answer comes from the immaterial world of faith.

When I find myself teetering on the edge of the abyss (which is the darkness of despair) I find that God draws me to stand before the cross of Jesus. There is no rational reason why the sacrifice of Jesus should convince me of the tenacity of hope; but it always does.

I imagine myself looking into the eyes of Jesus and recognise that suffering can never eclipse the love of God. Although Jesus on the cross felt that God had forsaken him, that he had no future, and his life had been a failure, nevertheless we know that, in a way totally beyond rational argument, his suffering would make sense in the light of the resurrection to come. Somehow, in a way that I cannot properly explain, the image of Jesus on the cross makes sense of my own suffering.

And an experience I find it even harder to grasp: if Jesus' acceptance of his own suffering on the cross brings hope to the world, is it possible that, by participating in his suffering, and by accepting the reality of my own situation, I can offer a glimmer of hope to others? I do not really understand this but I catch a glimpse of a truth: that suffering does not have to be a totally negative experience – it can be of value beyond ourselves.

I am aware of the voice of my critics: sometimes, in this series of reflections, I appear to be too glib. Like people in a similar position to my own, I am sometimes guilty of trying to offer simplistic encouragement. Nevertheless, I realise that those faced with suffering do have a choice. They can either slide into the shadow or struggle towards the light.

In making that choice, the only signpost it is worth following is the cross of Jesus. The cross, although itself wrapped in shadow, points us towards the light of the resurrection.

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First published in Gridiron, the magazine of St Laurence Church, Upminster in December 2012

No longer in control

Towards the end of 2008 Fr Michael was diagnosed with motor neurone disease. Even for someone who has spent the best part of his life reflecting on the human condition, Fr Michael still struggles to make sense of his illness. In a series of articles he reflects theologically on what it means to be ill.

For most of my life I have been a person who found it difficult to ask for help. Looking back, I think I saw it as a sign of weakness. To ask for help emphasised on my own lack of ability.

How things have changed! There are now very few physical things that I can do for myself. I need help with feeding, getting dressed, washing, toileting, even scratching the top of my head. I have become entirely dependent on other people – mostly, of course, Rosalind my wife.

There is no question. As far as physical things are concerned, I am no longer in control. I rely totally on the people around me.

I have had to come to terms with the facts. If it is true, as I used to believe, that to rely on others is a sign of weakness, then I have had to accept that I am weak. It would be a self-deception to believe that things are as they were.

I have learned lessons from no longer being in control of my life. Some of those lessons have been positive and useful.

First, I have realised that my former craving for independence sometimes amounted to arrogant self-centredness. We all need each other. It is a pure delusion to assume that we can cope with every aspect of our lives without sometimes asking for help. God gave us family and community; it benefits everyone when we seek and offer support.

Second, I would have expected that becoming dependent on others would lead to a massive loss of dignity. Surprisingly, this has not been the case. This is largely due to the sensitive way in which I am treated by my helpers – something for which I am extremely grateful. But I also keep my dignity by facing up to the reality of my situation. I know that I cannot survive without help, therefore I accept it without embarrassment.

Thirdly, having had to learn that I am a person who depends on others, I have also learned to be more dependent on God. This does not mean that I now relate to God with a childish dependence. Nor does it mean that I offer frequent bitter prayers about my own frustration. It is simply that recognising my disabilities has changed the way I relate to God. I no longer take such pride in my own autonomy; I have a greater sense of both gratitude and humility before God.

Many people share, to a greater or lesser degree, my sense of no longer being in control. The reason does not have to be serious illness. It can also be the limitations of age, the pressures of work and relationships, or simply a recognition that we cannot entirely control our lives.

I cannot demand that everyone makes the same journey of discovery that I have had to. But if you will share my lesson, recognise that you need other people, that genuine offers of help need not destroy your dignity, and that your realisation of dependence can paradoxically enhance your faith in God.

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First published in Gridiron, the magazine of St Laurence Church, Upminster in February 2013

Life without hope

When Jesus was facing the terror of the cross, did he know that his agony and death would quickly be followed by the resurrection? And if, on the other hand, he had no foreknowledge of Easter Sunday, would he still, for our sake, have accepted the horror of the cross on Good Friday?

In some of his conversations with his disciples, as they are reported in the Gospels, Jesus alluded to the fact that his death would be followed by resurrection. However, some scholars maintain that these allusions were added by the early church which, of course, had the benefit of hindsight. That may or may not be true, but it allows us to ask the question of whether Jesus went to the cross with the certainty that it was not the end.

If Jesus had had no personal hope beyond his death, would he still have accepted crucifixion for the sake of our salvation?

This is an important question for me. Medical scientists concerned with motor neurone disease can, at present, offer no hope of a cure. This is unlike many diseases where patients have a chance of recovery. MND is one of those diseases that offers nothing other than the deepening shadow of a slow decline; there is no possibility of a bright dawn to look forward to.

Those of you who regularly read this column will know that I am determined to remain upbeat and positive. Despite my illness, I have made it my mission to offer encouragement to people around me.

But is it reasonable to keep faith and to look for the blessings of God when, in this life, there is so little hope?

To answer my earlier question, I have no doubt at all that, even if Jesus had not known that resurrection would follow crucifixion, it would have made no difference to his ministry. He would still have dispensed love without bitterness, his preaching would still have been encouraging and optimistic. He would still have willingly accepted the terror of crucifixion for the sake of the world.

Jesus' extraordinary ministry did not depend on the reward of the resurrection. He did what he did because that was the role God had given him. The love, the teaching and the sacrifice were the result of his deep faith in the purposes of God. It would have made no difference if, for himself, he believed there was no hope.

I have always believed that the real motivation for any Christian has to be to follow Jesus and emulate his life. Too often we are inclined to say to God, "I will be your servant, but only as long as I am rewarded for it." But if we are true followers of Jesus, our commitment must be unconditional. The only basis of our discipleship is faith, not what we hope to get out of it.

When, as for me, life offers little by way of conventional hope, and when the rewards that most people look for are no longer on offer, we must look to Jesus for inspiration. In him, we discover the value of faith, and the recognition that, whatever the future holds, God still has a purpose for our lives.

I make no claims to being a uniquely confident believer. My religious life remains full of questions and uncertainty. But when I look to Jesus I discover that life can be lived without hope of earthly reward. Simple faith in God is sufficient for life to have its share of happiness, pleasure, usefulness, humour and the exchange of love.

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Thursday 6 December 2012

Being ill does have its compensations.