Is it fair?

 

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.

 

I ask you: Has God been fair to me?

 

Is it fair that I have contracted motor neurone disease? Is it fair that I have lost my mobility? Is it fair that I am losing my ability to speak clearly? Is it fair that my illness imposes such a burden on my family and friends?

 

In the middle of November I had one of my regular appointments with my MND specialist at Queen's Hospital. He drew me into a discussion about how the disease might progress, and the importance of deciding in advance what the medical team should do if I should face a medical crisis (this is something that I normally try to avoid thinking about). Is it fair that I should have to face such matters of life and death?

 

So I ask it again: Has God been fair to me? Is it fair that, despite doing my best to live as a faithful servant of God, I should have to face these problems?

 

I know that many people find themselves asking the same question. It is almost as if we have a contract with God: If I live a good life and avoid doing anything wicked, then God will look after me. If I keep my part of the bargain, it is unfair of God not to keep His.

 

The reality is that life is not fair. Things go wrong and nobody is to blame. We have no right to believe that (for example) if we regularly attend church and give generously to charities we can expect an untroubled life. The truth is that, if we face a calamity, no contract is broken – least of all with God.

 

The important point is this: when life seems unfair (and when we tell ourselves life has treated us unfairly) we have two options.

 

Either we can allow the sense of unfairness itself to become a burden on our life. To take that option will lead to bitterness, anger and (in some cases) a loss of faith.

 

Or we can accept our misfortune and try to make the best of the hand that life has dealt us.  To follow that course enables us to maintain a degree of serenity, increases our empathy with others who suffer (and perhaps empowers us to be more useful to them), and maintains our eagerness to continue as God's servants.

 

The second option is not always easy, but it leads to a positive outlook. If we give in to the first option we will descend into a destructive spiral of negativity.

 

Since I was diagnosed with MND I have done my best to avoid the myth of the unfairness of life. On the occasions when I have given in to such negative thoughts, reality has been restored by reflecting on this: Jesus went to the cross for me and for the salvation of the world. Was that fair?

The nature of hope

 

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.

 

"The discovery of the first chemical to prevent the death of brain tissue in a neurodegenerative disease has been hailed as the 'turning point' in the fight against Alzheimer's disease."

 

This was a major news item on the morning when I sat down to write this article. Clearly, it is a discovery that should bring a flash of hope to all those affected by Alzheimer's disease. But the news item began by talking about 'neurodegenerative diseases.' Could this discovery also bring hope to people like myself suffering from motor neurone disease?

 

MND is a disease that afflicts a relatively small number of people. It is not the subject of research projects on the scale of those directed to curing more widespread diseases. Nevertheless, whenever a new advance is made in the treatment of any neurological disease, I cannot help thinking, "Could this help me?"

 

All irrational surges of hope are soon tempered by caution. In the latest discovery in the fight against Alzheimer's disease, the research team has been careful to warn that it will be at least ten years before an effective drug can be developed.

 

It is now five years since I was diagnosed with motor neurone disease. I have never ceased to hope for a miracle – either a scientific breakthrough or a direct intervention by God. I do not want to be ill; I yearn to be cured, even though (my rational mind tells me) there is not much cause for optimism. Even if the latest discovery will eventually lead to a treatment for MND, it will come too late for me.

 

But I have never given up hope. I remain 'hopeful' because I have discovered that 'hope' means more to me than the possibility of a cure.

 

Maybe I have redefined the meaning of 'hope.' Nevertheless, I have discovered that, despite my MND, my life can still be filled with purpose, potential and fulfilment. I still experience love, moments of joy, the gift of humour. I discover that my life is dominated with such positive thoughts. This fills me with the same emotions associated with the normal understanding of 'hope.'

 

Hope (as I choose to understand the word) is the remedy against bitterness, anger and despair. Such hope I see as a gift from God. I have faith that this gift from God will be my ultimate cure.

 

I pray that one day in the not too distant future I will hear a news item that announces a discovery that will lead to a cure for motor neurone disease. I pray that such a discovery will be made in time to treat me, or at least provide a cure for future sufferers of MND.

 

While I am waiting, however, I do not lack hope, for hope (I have discovered) is God's gift to anyone who turns to him in faith.

Is life worth it?

 

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.

 

How can I remain positive and optimistic when suffering from a serious illness like motor neurone disease?

 

One of the things that has helped is to reflect on people who have overcome disaster, and yet lived useful and fulfilling lives. There are many people who have inspired me in this way. I want to mention just one: the composer Ludwig van Beethoven.

 

Anyone who loves music (as I do) must acknowledge that Beethoven was a giant of the artistic world. His music expresses the most noble of themes: freedom, joy, love, the triumph of the human spirit, our ability to find hope beyond despair. Not only was he a great and revolutionary composer, but he leads us along paths of optimism and faith that many of us would not discover but for his music.

 

And yet, Beethoven was afflicted with a disability that, for a musician, could not be more devastating. From an early age he began to lose his hearing. Most of his greatest works were written when he was profoundly deaf.

 

We should not think that Beethoven rose above this disability with ease. In fact, it was the greatest of all burdens to him. It nearly drove him to suicide.

 

In 1802 he wrote a letter to his brothers. He relates how devastating it was for him not to be able to hear the notes of a flute or the singing of a shepherd. "Such incidents brought me to the verge of despair; but little more and I would have put an end to my life. It was only art that withheld me. It seemed impossible to leave the world until I had produced all that I felt called upon to produce."

 

Beethoven's legacy to the world is infinitely greater than mine will ever be. Nevertheless, I find inspiration in his belief that he had been given the task to express, through his music, profound insights. Despite his cruel disability, he would not give up until he had achieved that objective.

 

Beethoven was not conventionally religious, but he certainly believed that his genius was 'given' to him. He believed it was his duty to use what he had been given and not to squander it however burdensome his life had become.

 

One of the things that enables me to carry on despite suffering from MND is the belief that I can still be of some small use to people. I will not give up until I have fulfilled those things I feel called to do.

 

Beethoven inspires me, not only in the profundity of his music, but because the disability of his deafness increased his greatness. We all have (perhaps modest) gifts that can be used in the service of God; ironically (as with Beethoven) those gifts can become more valuable when mediated through personal struggle.

 

Surely, Beethoven was right: it is impossible for us to leave this world until we have fulfilled all that we feel God has called upon us to do.

The God of small things

 

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.

 

Suffering from motor neurone disease has had a catastrophic effect on my life. But (this has surprised me) it is not the major disabilities that upset me most; what makes me sad is the loss of small thing.

 

Of course, I deeply regret the ways in which my life has become so limited. I can no longer walk, drive a car or go on holiday. I need help in practically every aspect of my daily routine. Taking services in church has become a struggle; I have had to give up many practical aspects of church life.

 

The loss of my ability to do these and other tasks that were once routine is, of course, deeply felt. But such disabilities have crept up on me so slowly that I have found it surprisingly easy to come to terms with them. Indeed, I have often found ways to adapt and to compensate for such things.

 

What I find more difficult is the loss of small thing. I can no longer hug my wife or help with the cooking. I have had to stop eating jellybabies as they are likely to get stuck in my throat or 'go down the wrong way.' My fingers are too weak to change the channel on the television. One of the most upsetting things was when I had to have my wedding ring cut off because my hands had swollen (the ring has now been enlarged and is back on my finger).

 

These are things that I know I have to cope with. Does my Christian faith help? Yes, of course it does, but not in the way you might expect.

 

It would be easy to say (rather piously) that the gift of faith offers a wonderful compensation for the things I have lost. I might no longer be able to thump out a hymn tune on the piano, but I can still be uplifted by the vision of the heavenly host offering its praises to God. I might no longer be able to roll over in bed, but I can rejoice that the resurrection released Jesus from the nails of the cross. I might no longer be able to take part in the little dramas that I sometimes write as parish entertainments, but I will always know that I am not cut off from the great drama of salvation.

 

All these things are true gifts of faith, but I actually find more comfort in less theological places.

 

If I suffer the loss of the small, mundane things of life, I have discovered that there is still joy all around me. There are so many things that I used to take for granted and that, at the time, I hardly noticed. Familiarity bred indifference. I now discover that such things have the power to feed my happiness.

 

I am surprised by the joy I find in the birds and wildlife I see from my windows. I savour my food more than I did in the past (surely, it tastes better than it used to). I find myself more deeply moved by music and poetry, and even the emotions of a trite television play. I am grateful for the opportunity to sit and think without the distraction of a busy life. The value I place on relationships, particularly with those close to me, has become much more important.

 

These are perhaps small things. Perhaps you think they are of little importance. Perhaps you think it rather sad that my life revolves around things of such insignificance.

 

But to me they have opened my eyes to the blessings of God that are found not only in the grand things of life but more often in the details. And that is as valuable a gift as any great theological insight.

 

Fr Michael

Forgive me for my optimism

 

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.

 

How is it possible to remain upbeat and optimistic when it is clear to everyone else that your life holds no promise?

 

One answer to this question is offered by the science of Evolutionary Psychology. I have to confess that I had not heard of this discipline until I chatted to a member of the congregation in one of my former churches. Evolutionary Psychology was the subject of her doctoral thesis. It is not surprising, therefore, that she was an enthusiast.

 

Her Big Idea was that evolution has equipped us to be optimists. Just as the evolutionary process has given us large brains, strong muscles and keen eyes in order to survive in a competitive world, so evolution has favoured those with an optimistic outlook.

 

If we were all coldly rational about our prospects in the world, we would agree with the philosopher Thomas Hobbes who declared that human life is "solitary, poor, nasty, brutish and short." If we truly believed that, we would probably all behave like lemmings and cast ourselves in droves over the nearest precipitous cliff. End of Homo Sapiens.

 

Instead, as a survival strategy, evolution has equipped us to spread a rosy glow over the tribulations of normal life. We pay more attention to good fortune than to bad luck. We cling onto the signs of hope while dismissing the fears of catastrophe. We are psychologically more inclined to see a glass as half full than half empty.

 

Of course, in any generation, an individual can buck the evolutionary trend. Everyone's life is a mixture of success and failure, hope and despair, generosity and bitterness. No matter how fortunate an individual may be in life, it is always possible to dismiss the blessings and inflate the problems.

 

Some people are unfortunate in the hand that life deals them. It is the lot of some people to suffer more than others. Nevertheless, I still believe that it is possible to choose to face life optimistically rather than pessimistically.

 

Speaking personally, it may be that I have been the lucky beneficiary of an evolutionary process. Perhaps I am simply fortunate to ride the crest of the evolutionary wave that favours an optimistic outlook over pessimism as a survival strategy.

 

But, for me, there is also a religious reasons for optimism – despite the severity of my physical decline and the limited nature of my prospects. I find cause for optimism in the Christian hope that stands at the heart of my life. Despite the pessimism that (I know) ought to result from suffering from motor neurone disease, I prefer an optimistic outlook built upon the love of God. When that is real, it puts all my troubles in a different context.

 

Perhaps, my outlook results from evolution; I am simply lucky to be an exceptionally-advanced ape. Actually, I am more inclined to believe that my optimism derives from the Christian hope. Whatever the reason, I find my outlook to be optimistic rather than pessimistic – and that makes all the difference.

Thoughts from a strange land

 

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.

 

Make no mistake, I would very much prefer not to suffer from motor neurone disease. When it was diagnosed it seemed like a catastrophe; it still does. It has changed my life. But – and here is the strange thing – some of the changes have been for the better.

 

In order for you to understand how something as awful as MND can bring benefits, I need to explain my affinity with an historical event. I have come to realise that, in a strange way, my life mirrors that period of Jewish history known as the Exile.

 

Around 600 BC, Judaea found itself surrounded by three powerful empires: Assyria, Egypt and Babylon. The Jewish homeland became the battleground for their struggle for supremacy. In the process, the Jewish state was destroyed and the holy city of Jerusalem was flattered. The Jews were deported to live as exiles in Babylon.

 

This was a catastrophe. They lost their home, their social structure was destroyed, they no longer had access to the Temple which had been the focus of their religious life. They were a broken people: "By the waters of Babylon – there we sat down and there we wept when we remembered Zion. How could we sing the Lord's song in a strange land?"

 

The temptation must have been to give up, to blame God, to abandon their faith, and to let hope be swamped with despair.

 

In practice, something quite different happen. The catastrophe of the Exile became the time for the flowering of the Jewish faith. Jewish scholars edited their traditional Scriptures and produced some of the most important prophetic books of the Old Testament. The scholarly group known as the Scribes emerged to rethink and develop their Jewish theology. And the tribal system, which had been the focus of so much conflict and bickering in ancient Israel, was replaced by a real sense of the unity of the Jewish people.

 

In short, out of the catastrophe of the Exile came a new depth and subtlety to their religious faith and a greater understanding of the love and majesty of God.

 

Sometimes my illness seems to me to be like an exile. It has destroyed the order of my old life, undermined so much that was taken for granted, made it impossible for me to realise my ambitions. Sometimes it really does make me feel as if, against my will, I have been transported to some foreign country.

 

And yet, this 'exile' has been for me a time of re-evaluation and discovery. I have had to think deeply about my faith, about the nature of God, and what it means to be a follower of Jesus. It has increased my appreciation of those closest to me, who have been forced to follow me into exile. And by removing the expectations of a 'normal' life, it has enabled me to discover what is really important and of value.

 

I would never say that, on balance, my MND has been a good thing – far from it. I still wish that my life, my relationships and my ministry had remained as they were. However, I am grateful for what my illness has taught me. It has enriched my faith and revealed to me the things that matter and the thing that do not.

 

Any of us, if we become seriously ill, can treat it as an unmitigated catastrophe. Or, despite the burden of suffering, we can use it as an opportunity to take stock of our lives and what is really important to us. We have that choice.

How are you?

 

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.

 

As part of my studies at Theological College I spent some time with a hospital chaplain. He was a wise old man who had much to pass on from his own experience.

 

One lesson, which has stood me in good stead through the years, is never to greet a person with, "How are you?" The problem is: they might feel obliged tell you. It is much better to ask them, "How are you feeling?" This gives control back to the patient. They can, if they wish, still tell you the gory details; or they can spare your feelings with a bland, "Not so bad, thank you."

 

People often ask me how I am. I could answer with full honesty: "I'm suffering from motor neurone disease, which is a debilitating and terminal illness in which the nerves gradually close down. The truth is, I've lived longer than most people do with this condition, but as time goes on I am becoming more and more physically disabled . . ."

 

There are, of course, times when it is appropriate to give an honest and full answer. But sick people who are determined to take every opportunity to list the full horror of their symptoms rapidly become boors. And I do not want people to look upon me as a problem, an embarrassment, a killjoy or a boor. That is not how I feel about myself.

 

I do not want my life to be dominated by how I am. Much more important is how I feel. And that has much more to do with how I face up to my problems than with the problems themselves. If people ask me how I am, I would much rather tell them about the positive things in my life: the things I can still enjoy, how I maintain a sense of humour, the ways in which I can still be of use to people, my continuing journey of faith, and the many ways in which I still feel blessed by God. These are positive things; they build us up. To dwell on the negative aspects of life does no one any good.

 

I do not want to talk about how I am. I want to talk about how I feel.

 

I cannot resist ending with one of my favourite quotations. Unfortunately, I cannot remember who said it (perhaps someone will be able to tell me). It shows the value of a sense of humour even in the face of serious illness.

 

The lady was on her deathbed. She was not expected to live more than a few days. A friend called to see her, oozing sympathy and compassion. "How are you, dear?" she asked.

 

From her bed the lady replied: "I'm dying. But apart from that, quite well thank you."

It is no one's fault

 

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.

 

Is it fair that I should suffer from motor neurone disease? Indeed, is it not reasonable for anyone diagnosed with a serious illness to claim that God is unjust?

 

I have often met a sense of outrage when visiting the sick. Those who are ill – or, surprisingly, more often their close relatives – rail against the unfairness and injustice. "Why should he suffer with something like this? He's always lived the good life. He's never done anyone any harm. It doesn't seem right that he should have to suffer in this way. It's not fair"

 

I have to confess, in my darker moments I have asked myself a similar question. Throughout my life I have done my best to serve God faithfully. I have always tried to avoid sin, and have asked God's forgiveness when I have significantly failed. If motor neurone disease sometimes feels like a punishment, does not Justice herself demand that it should be visited upon the wicked?

 

In truth, my dark thoughts have no justification. Fairness and justice have nothing to do with my medical condition. There are three reasons for believing this:

 

Firstly, it is entirely false to claim that the world is divided into two distinct groups: the good and the bad. While it is undoubtedly true that some people seem to lead a 'better' life of others, we all fall short of moral perfection. I do not feel that I can claim to be a 'better' person than anyone else, nor can I claim that it would be more just for someone else to have motor neurone disease than me. I could never say to anyone, "it should be you who has MND rather than me."

 

Secondly, the injustice of Jesus' suffering was far greater than mine. No one can claim that Jesus was treated fairly by the authorities, his death sentence, the abuse he suffered at the hands of the soldiers, his crucifixion. Jesus is the exemplar; if we seek to follow him we cannot claim that life has to be fair.

 

Thirdly, we can no longer believe (as our mediaeval forebears did) that all misfortunes are a punishment. Medical science shows that to suffer from a disease is (generally) a matter of chance. When I was diagnosed with motor neurone disease, it carried with it no judgement on my state of morality. Although we do not yet know the cause of MND, there is no suggestion that it is anything other than a matter of chance.

 

I have no right to be indignant about being ill. No one, least of all God, has been unfair to me. I am not a victim of injustice. It is simply a matter of fact: I suffer from motor neurone disease.

 

What is important is how I respond.

* * * * * * *

First published in Gridiron, the Parish Magazine of St Laurence Church, Upminster

 

 

Am I just lucky?

 

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.

 

It happened again. I had another visit from a representative of the Care Services whose job was to check that I was still entitled to the level of care I receive. Inevitably, it involved filling in a form.

 

We came to the question, "In what way has your illness affected your mental state?" I replied that I did not think that suffering from MND had affected my mental state at all. "Surely," he said, "you must sometimes get depressed." Again, I answered that I do not. Rosalind, my wife, chipped in with the observation that we try, and generally succeed, to remain positive.

 

He looked at us for a moment, then said, "I suppose that is so because you are Christians."

 

This prompts a question that I ask myself often. Do I cope well with the horrors of MND because of my religious faith, or am I just lucky in my personality?

 

A few months ago I read an interview with Prof Stephen Hawking (who also suffers from MND). He is far more disabled and I am, yet he was reported as saying that he has never felt as content with his life as he feels at present.

 

Prof Hawking is not a religious man (although I find some of his scientific writings border on the 'spiritual'). If he can cope so well mentally without religious faith, it would seem to imply that personality is more important than religiosity. He and I are just lucky.

 

It is certainly true that I have met many seriously ill Christians who cannot come to terms with their misfortune. Christian faith does not always save you from depression and a negative attitude.

 

Yet I would want to say (and say it emphatically) that I personally stay positive because of my faith in God. Perhaps I am lucky in my personality, but it is my Christian faith that makes me what I am. Certainly, people without faith can cope with illness in an exemplary way. But a religious faith provides a powerful context for making sense of your misfortune.

 

Survey after survey has shown that (on average) Christians faced with serious illness cope better, complain less and live longer than those with no faith.

 

Stephen Hawking, despite the fact that he sometimes makes me cross by his comments on religion, is an inspiration to me. Serious illness need not destroy you mentally, nor prevent you from relishing life.

 

I respect those who cope with life's misfortunes despite having no religious faith. However, for me, as with many believers, I find that God often surprises me with the gifts of courage, optimism, assurance and humour. It is this faith that makes me what I am and keeps me positive.

 

For that, if for no other reason, it would commend a religious faith to anyone.