My Donkey Body

It’s a small world, sometimes. Last weekend Fiona and I were camped in the shearers quarters at Lake Menindee, together with the members of Saltbush Church from Broken Hill. We hadn’t been there before and it’s quite a while since we were anywhere so remote. Over breakfast I met John Wenham, and I jokingly said that I had a few books written by him at home. Turns out that I had read books by his grandfather of the same name, also a few by his dad, and a couple by one of his uncles. I’ve since read a book by another of his uncles, Michael Wenham, called My Donkey Body: Living with a body that no longer obeys you. Wow, so many books in one family!

donkeyMy Donkey Body recounts Michael Wenham’s journey with a rare form of Motor Neurone Disease (MND). If you’re unfamiliar with this disease, think Stephen Hawking. The motor neurones that transmit instructions from the brain to the muscles deteriorate and cannot replace themselves. The brain keeps working but it becomes unable to get messages to the muscles to do their work. The person becomes more and more debilitated and eventually the muscles that keep you alive stop working. MND is a terminal illness and there is currently no known cure.

Michael Wenham is a Christian, who tells his story of discovering and living with this disease from the perspective of faith. My Donkey Body is a sad, gripping, and often humorous account of one man, together with his wife and family, coming to grips with weakness, disability, frustration, pain, and ultimately mortality. As a preacher, whose voice was his tool of trade, he recounts what it’s like to lose control over your vocal muscles. He shares about the humiliation of being picked up out of the gutter by strangers and relying on his wife to wipe his backside. There’s nothing romantic about MND.

I checked with Google and discovered that Wenham continues to blog, write articles, and he has done some very moving video interviews. Wenham has now been living with this disease for many years. While his physical abilities have declined, his mind has remained sharp. He engages with real issues of relationships, health, religion, dependence, living and dying. Wenham has engaged with Stephen Hawking and provided informed and sympathetic rebuttals to Hawking’s dismissive critiques of any afterlife. He has written against legalising assisted suicide for the terminally ill like himself.  He opposes the creation of human stem cells for the purpose of experimentation, even if it should provide the cure for MND. His arguments aren’t a bigoted bias toward regressive religion over against progressive science. Rather, they arise from one who knows suffering and mortality, but who deeply respects that all persons are made in God’s image. He demonstrates powerfully that people are not valuable according to their utility and value to society (however that might be measured), but because God has made them human. Every person matters.

Wenham argues for the importance of knowing God and having faith in God’s power and goodness. He’s prepared to ask the hard questions and admits to not having all the answers. Being a Christian doesn’t take away the pain or the suffering. He argues with CS Lewis:

Talk to me about the truth of religion and I’ll listen gladly. Talk to me about the duty of religion and I’ll listen submissively. But don’t come talking to me about the consolations of religion or I shall suspect you don’t understand.
(quoting CS Lewis A Grief Observed p23) in My Donkey Body p128

I am grateful that Michael Wenham took the time and made the effort to share his thoughts. Much of this book resonates with my experience of receiving a terminal diagnosis, coping with physical and mental pain, losing things that have shaped my identity, and asking questions of faith and doubt. Yet my circumstances have taken a turn for the better. Many of my disabilities have been replaced by renewed abilities. And that brings it’s own dangers and threats—especially the risk of forgetting how much I need God.

There is something about weakness that drives us back to our Father in heaven. I need to be reminded that this life is a gift from God. Every day is a day for rejoicing. Nothing should be taken for granted. The less I remember my dependence on God, the bigger an ass I become.

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Remember the things that matter when hope is hard to find

RememberGood friends of ours sent us this book in the mail. I know they’re good friends because they sent such a good book! It truly is a gem. This is a book to read slowly. I didn’t – but I will! Take it a chapter at a time. Maybe read it more than once. Pause, reflect, write notes, meditate and pray.

Rhonda Watson has motor neurone disease (MND) and has lost her ability to speak, along with other physical functions. In the midst of her loss and grief she turns her heart to the Word of God. Not in any superficial or trite sense, but grappling with the ambiguities and complexities of life. Like so many of the Psalms, she cries out at the pain, she fights to maintain her trust in God, and she finds consolation in the character and promises of God. I found that I could identify with many of the author’s feelings and experiences, and I was encouraged by her honesty as she struggled to find answers and hope in God. My heart was warmed as I read Remember and these words from the foreword ring true:

Rhonda Watson writes with the sensitivity of a tender heart, tested in the furnace of trial, and the wisdom of someone who has learned to depend utterly on God for her daily portion of strength. I greatly appreciate the combination of the subjective – her own feelings and experience – and the objective truths of the Scriptures.  (p7)

The author follows the advice of Dr Martyn Lloyd-Jones in his book Spiritual Depression where he stresses the importance of talking to ourselves, instead of simply allowing ‘ourselves’ to talk to us. There are so many voices telling us what to think and feel and do, and sometimes the worst one to listen to is our own! It’s so much more helpful to listen to God’s voice and allow him to speak into our lives. God offers us true perspective and we do well to remind ourselves of God, who he is, what he has done, and what he promises to do.

Each chapter of Remember takes us on a journey of hope with the author. She grapples with the issues faced by those who are suffering and she turns our hearts and minds to the wonder and freedom found only in God. This is no simple exercise. It requires honesty, humility, and trust. We’re called to open our Bibles and prayerfully take God at his word. This book helps us through this process and encourages us to make our own responses in each of the following areas.

1. Beauty and ugliness

In a society obsessed with body image, it can be very difficult for those with chronic illness and disability. Instead of being overwhelmed by the ugliness of our situation or measuring ourselves by others, we are encouraged to look to Jesus who reveals the beauty of God. Jesus takes the ugliness of our sin and replaces it with his beautiful righteousness.

2. Silence and speech

Watson had spent her life speaking. She was a teacher, trainer, and educator. She mourns her inability to read books to her grandchildren or enjoy conversation with family and friends. And yet she writes:

I look forward to the day when, with healed tongue, I will sing and praise my Saviour. On that day my silence will be over.  (p37)

3. Fear and trust

Fear
Took me by the throat today
Shook me till
My bones rattled

Chased me
Relentless and cold
Insidious, mocking
Chased me all day

I could have stood my ground
But I ran
So fear
Grew stronger

I was captured
In the end
Quaking and fallen
Curled on the ground in shame

(Rhonda Watson, 2009. p63-64)

We’re encouraged to overcome our fears by turning to God who can be trusted. God is our mighty, sovereign, and loving Saviour. He calls us, as his beloved children, to trust him.

4. Thankfulness and bitterness

I found this chapter full of challenges. It’s so easy to feel that this world owes us something and to grow bitter at lost opportunities or unrealised potential through a disabling disease. Drawing on Oswald Chambers, Watson writes of the challenge to live an ordinary, unobserved, ignored existence as a disciple of Jesus. I might think that I should be doing extraordinary things for God, when he simply calls me to do ordinary things in an exceptional way – his way, for his glory, not mine! When I’m reminded of God’s extraordinary grace in Jesus Christ, it moves me toward thankfulness instead of wallowing in bitterness.

5. Joy and grief

Acceptance of grief is part of the journey toward joy.  (p107)

We don’t need to deny or suppress grief in order to experience joy. The Psalms give expression to a range of human emotions. They acknowledge and give voice to our pain, disappointment and grief. They show that it’s okay to cry out to God, to express our doubts, worries and fears. And they shine a light on the path to joy that can only be found in God himself. Joy is not be found in our circumstances, but through trusting our loving Father in Heaven despite our circumstances.

6. Delight and despair

In times of suffering it is so easy to give in to despair, to give up hope. Perhaps, we now view ourselves as unproductive and worthless. Watson speaks of two choices for how we think and act…

Choice 1: I am worthless, I don’t know why God would inflict this useless suffering on me, I give up, I will turn my face to the wall and surrender to these feelings of despair.
Choice 2: This is tough going, it’s hard to hold on to a sense of worth, but nevertheless I will commit my way to God, I will attune my desires to his ways, I will trust him, and I will seek to delight him.  (p132-133)

7. Awake or asleep?

Chronic illness can lead to sleepiness. Not simply staying in bed, but drifting aimlessly and passing the time with mindless distractions. Some of this is necessary, but failure to navigate can lead to shipwreck. We can slide into self-pity and resentment or drift into despair. We need awakening to how God sees us, our circumstances and this world we live in. Watson offers this prayer:

Our Heavenly Father,
Help us to stay awake.
We grow drowsy and distracted as we wait for you,
At times our hearts are loaded down with sadness and struggle.
By your Spirit, strengthen us,
By your Word, nourish us,
Keep us longing for our true home,
Forever with you.  (p160)

8. Life and death

Everyone one of us is going to die. This is our lot, but that doesn’t make it okay. Death wasn’t part of the good world that God created and it’s right to rage against it. It’s not a natural part of life and shouldn’t be viewed as such. Death sucks!

22 We know that the whole creation has been groaning as in the pains of childbirth right up to the present time. 23 Not only so, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for our adoption to sonship, the redemption of our bodies. 24 For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what they already have?  (Romans 8:22-24)

Many of us go through life ignoring death. Those with chronic and terminal illnesses probably feel it’s presence more acutely. We groan along with the creation at the pain it causes. And we groan not in despair, but with hope and longing. Jesus in his death and resurrection has conquered death’s power over us. God has promised that he will abolish death and restore the creation, and we long for that day. We are meant for life, not death. Watson writes:

…there are two ways of looking at this day. Either I am dying of MND, or I am living with MND. There is a simple but profound difference between these two perspectives. One is death, one is life. The choice is: Which perspective will I accept for myself today?  (p166).

And so I will pray:

Please God, help me to choose life.

I thank God that he has used Rhonda Watson to write this honest and inspirational book. My only regret is that the cover has a feminine look about it! This is for blokes just as much as women. It’s a gutsy message. Remember is a book for all people, not simply those with illness of some form or other. We will all experience the struggles of faith in the face of suffering and temptations. This book calls us to remember the things that matter when hope is hard to find.