It had to happen sometime. That moment when my physical impairment became sufficiently noticeable that complete strangers feel the need to offer me assistance.
Last Sunday as my flight from Perth approached Sydney, a fifty-something woman across the aisle watched me struggle to put on the shoes I had earlier slipped off. When we landed she insisted on helping me retrieve my baggage from the overhead locker.
Yesterday another middle age woman offered me her seat on the train.
I’m not sure how to respond. One part of me is humbled and thankful. Another part of me feels embarrassed. Yet another part of me is thinking “no, this is way too soon.”
I wonder why I feel embarrassed. It’s not that I am averse to public attention. Is it that somewhere deep down I feel my growing disability diminishes me, defines me as an object of pity and compassion, as less than I once was?
I dare not deny this diminishing. It is true that I can’t do things I once did. It is not a diminishing of worth or personhood, but it is a diminishing of physical capacity.
And this leads me to realize that we’re all diminished in some way, all less than our very best selves. Whether it be intellectually, emotionally, physically, spiritually, or relationally, aren’t we all somewhat dysfunctional?
That’s what makes love beautiful. No one needs my pity, and I don’t need yours, but they do need my compassion, generosity, grace and help, and I need yours. When we extend this to each other we make each other whole, create the environment where the limitations that our disabilities and dysfunctions generate are rendered null. Our individual diminishing is itself diminished and we realize the glory and possibilities of our humanity.
So, despite the awkwardness I will welcome the generosity of those who want to help me retrieve my baggage or find me a seat, and learn from them the gift of diminishing those things that diminish us.
In recent months my physical condition has deteriorated. The tremor in my right side is becoming more pronounced; I have found all kinds of things for which you need fine motor skills, like folding down the collar on your shirt, and bending down to put on your shoes and socks; I occasionally lose my balance; and the tremor is just starting to emerge in my left side.
Yet in the midst of this, I have found my disease has brought unforeseen blessing into my life. It is gradually making me less self-sufficient. A friend suggested to me some time ago that while I had spent my life helping others, he wasn’t so sure I would be open to being helped. Parkinson’s is helping me be more open.
We were at a family function at Buttai barn a couple of weeks back when I went to the bar to buy a few drinks. I got about half the way back to the table and I was struggling. My hand was tremoring, my feet were shuffling, and my weak right arm saw the drinks tray wavering precariously. I was having to use all my powers of concentration to keep myself from spilling the drinks. One of the staff noticed, and without any awkwardness or embarrassment said “let me help you with that”, took the tray and carried it the rest of the way to the table.
This afternoon I was talking with a friend who had experienced some pretty big challenges in the past twelve months, and rather than me simply empathising with him, he was also empathising with me. There was a mutuality and bond between us that simply wouldn’t have been possible in my pre-Parkinson days.
As the disease becomes more noticeable I find these sorts of moments of grace invading my life on regular basis, and this is why, as much as I would prefer not to have the disease, in a strange kind of way I’m thankful that I do. In my head I’ve always maintained that I need others, but in practice, outside of my family, I all too often projected a confident and capable person who didn’t really need too much help. Bit by bit my stubborn pride and fiercely held independence are being broken down. I no longer can enjoy the illusion, and I think it is an illusion, of independence; I can no longer perpetuate my own version of the myth of the self-made man. I need other people in ways I have never needed them before. Yet far from being a dehumanising experience, it is helping me realise in profoundly new ways just how precious it is to belong to humanity.
It seems paradoxical, but at the same time that my body is weakening, I am strengthening, not by becoming more self-sufficient, more competent or more capable, but by becoming more dependent than I’ve ever been.
Last week I was reminded of a delightful anecdote from Dr Paul Brand, the medico who did revolutionary work on leprosy. Brand, who grew up in India, was sent to boarding school in England at the age of nine. When he was fourteen he received a telegram telling him that his father had died. The young Brand was heartbroken. A few weeks later a letter arrived that had been written by his father just before he died, but as it was sent by boat it arrived after the news had reached Brand of his father’s death.
Paul Brand’s father described the hills around their home and then finished with these words: “God means us to delight in his world. It isn’t necessary to know botany or zoology or biology in order to enjoy the manifold life of nature. Just observe. And remember. And compare. And be always looking to God with thankfulness and worship for having placed you in such a delightful corner of the universe as the planet Earth.”
Coming on the back of weeks of distressing news – the refugee crisis flowing out of Syria, war in the Ukraine, an ebola epidemic in West Africa, the brutality with which Australia treats asylum seekers – I found this a very helpful reminder. Neither Paul Brand nor his father were escapists. They were not people who retreated from the difficulties of the world, but spent their lives confronting them head on. Nonetheless, they also saw the beauty and glory of our world.
I cannot help getting myself involved with the injustices in our world. Something burns deeply within me that drives me to leave this world a better place than I found it. At the same time I find myself dancing crazily to the closing themes of the TV shows we have been watching, getting a buzz out of a brilliant sunset, feeling my spirit soar when a dolphin surfaces when I’m out on the water. The words in that letter sum it up perfectly, these things create within me a sense of thankfulness that I’ve been placed in such delightful corner of the universe as planet Earth.
It seems incongruous, even trivial, to celebrate a dolphin leaping from the water at the same time bombs are falling in Gaza. But I need to do it. I think we all need to do it. Thankfulness and worship enable me to not only see, but to feel in my bones the goodness in our world and in others. They create hope that the final word in history and in the causes I join will not be despair but delight. Far from representing an escape from the pain, thankfulness and worship provide me with the lens through which to engage it. So I will drink deeply of all the beauty I can. I need to, for without this all that is left is escapism and despair.
I sometimes get asked how I answer the ‘why me?’ question. As my my tremors increase and my movements become slower, it seems a particularly and painfully relevant question. Why me, when I have given my life to serving Christ? Why me, when there’s so much more to do?
The truth is, I have never really asked the question, at least not with a sense of anguish or outrage. Lurking behind “why me?” is an assumption that the world is orderly, that God has everything under control, and that whatever happens is an outworking of God’s good and perfect will. Only in such a universe, where everything, even suffering and evil, has a divine purpose, does “why me?” make sense.
That’s not the universe I perceive. To ask “why me?” is to fail to appreciate the true evil of evil – it’s mind numbing purposelessness. It has no reason, no goal, no order. It is random, chaotic, disordered. And it has invaded our universe and our lives, scarring and undermining the order that is there.
I don’t therefore see any divine purpose behind my Parkinsons. Rather it is symptomatic of the random and chaotic realities of life. So rather than “why me?” I ask “why not me?” I am as good a candidate as any for the mutant gene/s or whatever it is that causes Parkinsons.
For me the real question is “who will I be?” Touched by the chaotic nature of suffering, will I give in to despair, fall prey to the illusion that reality is all randomness and chaos, or will I celebrate the order that sits alongside the disorder? For every tremor that shakes my body, there is a brilliant sunrise, a neural pathway that allows me to think, a friend who ties the fishing knot when I can’t, the love of Sandy, Ashley, Jessica and Lachlan, opportunities to make a difference. These and more are signals to me that my world is neither all chaos nor all ordered. It is both. And the beauty of it is that unlike the chaos of evil, the order allows me to live purposefully.
I’m on the train travelling from Sydney home to Newcastle. The sun is shining as we pass over a shimmering Hawkesbury river. The music of Mumford and Sons plays through my headphones. And I can’t help but feel it’s good to be alive.
There are some significant challenges in my life right now, challenges that have engulfed me in swirling emotion and uncertainty.
Nonetheless, as I pass over the Hawkesbury I am reminded of the incredible beauty in the world and my spirit is nourished. As music plays in my ears I am blessed by the melodies that resonate deeply within me. And I head home to four of the most incredible human beings I know. Tonight we will laugh and rage and talk about issues great and small, and maybe even fight, but always knowing that we are bound by a love that is unquenchable, sharing such a high degree of comfort with each other that we can laugh and rage and talk about issues great and small, and maybe even fight.
And I can’t help but feel that it is good to be alive.
“Life is difficult.” So begins Scott Peck’s best selling book, The Road Less Travelled. This has certainly been driven home to me the last couple of years. At some stage most of us experience significant pain. A broken relationship. A debilitating illness. A period of unemployment. A violent assault. And finally, death.
Christians are not immune to this. We follow a suffering Saviour who warns that difficulties will come our way. But we do have an incredible resource to help us live well: our faith and the God we proclaim.
Living with Suffering
“Life is difficult” certainly was true to Jesus’ experience. He came to Israel as the God-appointed Saviour, he healed the sick, exorcised the possessed and welcomed the sinner. Yet a every point he faced strident criticism and violent opposition.
As a newborn child Herod sought his death, forcing Jesus and his parents to flee for their lives to Egypt (Matthew 2). When he began his public ministry some thirty years later he remained the focus of violence. The religious establishment claimed he was possessed by demons and were so opposed that they conspired to to have Jesus killed (Matthew 12:24; Mark 11:18). The people of his hometown of Nazareth grew so furious with Jesus that they “drove him out of the town, and led him to the brow of the hill on which their town was built, so that they might hurl him off the cliff.” (Luke 4: 29). Herod Antipas, drunk with power and perceiving Jesus as a threat, sought his death (Luke 13:31).
These murderous intentions reached their denouement in Jesus’ violent death. Betrayed by one of his friends and abandoned by the others he was convicted on trumped up charges, whipped, beaten, spat upon, mocked, then subject to the most cruel and humiliating form of execution known to the ancient world.
The emotional enormity of these events weighed heavily upon Jesus. The night of his arrest he prayed alone on the Mount of Olives, so anguished that the Gospel writer says “his sweat was like drops of blood falling to the ground”(Luke 22:43). Later, as he hung upon the cross, he cried the words of all those who feel abandoned by God: “My God, my God, why have you forsaken me?”
If the Son of God experienced pain and suffering, his followers can expect it too. Suffering is a symptom of a dysfunctional world. As long as people are morally flawed, our minds lacking in wisdom, our bodies susceptible to disease and aging, and our earth structured in such a way that natural disasters occur, pain and difficulty will be part of the human experience.
So the apostle Peter reminds those who are slaves
if you endure when you do right and suffer for it, you have God’s approval. For to this you have been called, because Christ also suffered for you, leaving you an example, so that you should follow in his steps. 1 Peter 2:20
Where Peter speaks of the difficulties that come from unjust treatment by masters, the apostle Paul describes the suffering of a dysfunctional environment and decaying bodies
I consider that the sufferings of this present time are not worth comparing with the glory about to be revealed to us. For the creation waits with eager longing for the revealing of the children of God; for the creation was subjected to futility, not of its own will but by the will of the one who subjected it, in hope that the creation itself will be set free from its bondage to decay and will obtain the freedom of the glory of the children of God. We know that the whole creation has been groaning in labour pains until now; and not only the creation, but we ourselves, who have the first fruits of the Spirit, groan inwardly while we wait for adoption, the redemption of our bodies. For in hope we were saved. Now hope that is seen is not hope. For who hopes for what is seen? But if we hope for what we do not see, we wait for it with patience. Romans 8:18-25
Bringing together difficulties that come from persecution, injustice, disease, poverty, and more James of the trials of any kind
My brothers and sisters, whenever you face trials of any kind, consider it nothing but joy, because you know that the testing of your faith produces endurance; and let endurance have its full effect, so that you may be mature and complete, lacking in nothing. James 1:2-4
For Jesus and those of his era suffering was a reality of life. They lived under often brutal, dictatorial regimes; experienced high levels of poverty; were susceptible to disease, and had little medical knowledge. On top of this Christians often aroused opposition due to their refusal to worship the gods of the home, city and State. Life was difficult and the notion that Christians would not share in this is foreign to the teaching of Jesus and the New Testament.
Living Meaningfully Through Suffering
We live in an age where, thankfully, prosperity and technology allow us to avoid much suffering. But our emphasis on happiness rather than meaning as the goal of life has created an unhealthy attitude to suffering, which at its worst sees faith as a guarantee that we can be shielded from difficulty and pain. It is not.
Jesus shows us that what matters is not happiness but meaning. His life was centred on the goal of proclaiming and inaugurating the reign of God, and it was this that gave him the framework for making sense of life and enduring great suffering. So we see him on the night of his betrayal praying “Father, if you are willing, take this cup from me; yet not my will, but yours be done” (Luke 22:42). He does not welcome the suffering that lies ahead, but if it is part of living under the reign of God he will face it.
I have found something similar. I was blessed to be raised in a household where happiness was seen as a byproduct of living meaningfully, and where meaning was constructed in terms of seeking the reign of God in my life and world. This has given me a framework for dealing with Parkinsons. I do not relish what lies ahead of me, but neither has my world collapsed in on me. Whatever comes my way I will be able to live meaningfully through it.
Living Joyfully Through Suffering
At the same time that Jesus experienced difficulty he was able to live thankfully and joyfully. I do not mean that he was experiencing joy at the same time he was filled with anxiety as he prayed on the Mount of Olives, but that his difficulties did not blind him to that which was good in his world. Sunshine and rain were gifts of God that enable us to grow food (Matthew 5:45); the lilies of the field and birds of the air found provision for their need (Matthew 6:25-34); he enjoyed deep friendship with his disciples, and John in particular (John 20:2); he shared table with tax collectors, prostitutes and others and seems to have genuinely enjoyed their company.
The End of Suffering
Nor was Jesus resigned to suffering. At the centre of his ministry was his declaration that the kingdom of God was arriving. This does not refer to an immaterial realm we inhabit after death, but to the remaking of this world. Disease, suffering, death were intrusions into God’s good world that were to be eliminated once and for all.
In Luke 4, for example, Jesus interprets his ministry through the lens of Isaiah 61
The Spirit of the Lord is upon me, because he has anointed me to bring good news to the poor. He has sent me to proclaim release to the captives and recovery of sight to the blind, to let the oppressed go free, to proclaim the year of the Lord’s favour.
Isaiah spoke of a figure who proclaims to Israel that the time of redemption has come, that the people will live in the land free from violence, hunger, disease, fear and injustice. This was to be the first stage in a process by which all the nations were restored to God and fullness of life. Jesus declares that in him this prophecy is being fulfilled, giving it a dramatic twist. He and the community of disciples gathered around him were the true Israel.
The miracles Jesus performs are then signs of the coming reign of God. They function as teasers, pointers to what will come, the “renewal of all things” (Matthew 19:28). This is what happens when God reigns – the blind receive sight, the lame walk, the possessed are exorcised, the sinner is forgiven, the outcast welcomed.
Far from a fatalistic resignation to suffering, Jesus sees himself as coming to eliminate it. The New Testament letters fill this out. Jesus’ resurrection from the dead to a new existence where he is free from disease, decay and death is, like his miracles, a sign of what is to come for all of us.
Christ has been raised from the dead, the first fruits of those who have died. For since death came through a human being, the resurrection of the dead has also come through a human being; for as all die in Adam, so all will be made alive in Christ. But each in his own order: Christ the first fruits, then at his coming those who belong to Christ. Then comes the end, when he hands over the kingdom to God the Father, after he has destroyed every ruler and every authority and power. For he must reign until he has put all his enemies under his feet. The last enemy to be destroyed is death. 1 Corinthians 15:20-26
We may suffer in the present, but a time is coming when the world will be made new.
Suffering Like Jesus
Jesus then provides the lens through which Christians ought to view suffering. It means that we accept suffering as part and parcel of life. Attempts to deny or evade this simply prevent us from coming to grips with reality.
But we refuse to allow suffering to rob us of life. We are determined to live meaningfully and to see and soak up all the goodness in life.
We refuse to be resigned to suffering, this unwelcome intrusion into God’s good world. Where injustice exists we will fight it; where relationships have broken down we will seek reconciliation and forgiveness; where disease wracks bodies we will apply ourselves to finding cures; where poverty occurs we will share our resources; where people are struggling, wounded or despairing, we will be present and caring.
And we do so because we know that a future is coming when it really will be on earth as in heaven.