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Tasting the Goodness of God in the Land of Motor Neurone Disease: A Guest Post by Michael Wenham

By Anita Mathias

View from the window



Anita sends me a message on Facebook. Would I think about a guest post on her blog: “Perhaps on how you saw and discovered God’s goodness (if you did) amidst the unexpected disability. So it will sort of sum up ‘My Donkeybody’  in a blog post…”? 



And I sit at the table gazing out of the window, wondering, “What have I got to say?” I was diagnosed with a Motor Neurone Disorder in 2002, and expected to go the way of the vast majority of MND patients and to be dead within a couple of years, after a rapid and distressing loss of muscle control.
Of course, I was a vicar at the time and had had a Christian faith as long as I could remember. That meant, according to some people, that it was especially incomprehensible and unfair that this random disease had hit me and, according to others, that I had an unfair advantage over others having the crutch of faith to soften the blow.
As it happened, evidently, I don’t have the usual ALS but the rare PLS (Primary Lateral Sclerosis) – if you like I have the protracted rather than the accelerated form. One of my friends with the same type was unsure which was preferable, a quick dying or a slow one. Personally, I’m glad still to be alive. However, I am 100% dependent on others for my survival. From getting up in the morning to getting undressed at night, I need help; getting fed, using the toilet, having a shower, going out – all require a carer, which in my case means Jane, my wife, unless she breaks her collar-bone as she did recently. Do I enjoy it? No. 


I wish I was able to walk on the Welsh hills with Jane and the dog, to feel the wind and jump the streams. I wish I could chat to my grandchildren without sounding monstrous. In 2010 I wrote a book with a young mum in South Africa, Jozanne Moss, who also had MND (‘I Choose Everything’). Her first section is “I wish…” in which she vividly lists the things that she misses or knows she won’t be able to do in the future: “I wish… I wish…”. In her conclusion she says, “I might not be able to be the mother I always wished I could be, but I am the mother that God intended for me to be for Luke and Nicole, in order for them to know and love Him.” It’s heart-wrenching. She died on 6th February. No, I don’t enjoy the frustrations. I regret what I’ve lost.
In one way, I envy Jozanne now, because presumably she sees clearly what she previously held on to by faith. As I look out through the french windows, the far side of the road is virtually invisible. I can just distinguish the outlines of the estate houses through the fog. But at a quick glance you wouldn’t know they were there. Even the other side of the garden, which isn’t big, is misty. Only the trough right next to the window retains its vibrant colours. As I reflect on Anita’s challenge, which is how it feels (“how you saw and discovered God’s goodness”), it seems as though this view is a metaphor for my perceptions at the moment. It feels as if a fog has descended on my old certainties.
Of course I know that the estate is there. Only yesterday I was winding my way in my wheelchair through its snickets in the warm sunshine to Cornerstone, the café where I’m always welcomed. Nothing’s changed about the estate, but my view of it has changed. 


Some years ago, God came and strangely warmed me. “Falling in love again” isn’t an adequate description for what that did to me, but it left its indelible mark. Perhaps that’s why I don’t doubt that God’s love is there; and yet now it is shrouded in mystery. Lovely friends with MND have died, and I can’t give an answer as to why they had it, anymore than why God who is love permits all the natural catastrophes and any of the personal tragedies which bedevil our world. If “all shall be well and all manner of thing shall be well”, which I’m still convinced is true, please don’t ask me to begin to explain how. Thatlove is huger and more mysterious than the measures of my mind.
And yet I have evidence, even in the frustrations and physical limitations of my disease, of that love. A few weeks ago, on Ski Sunday, there was a remarkable interview with disabled skier, Peter Dunning, who lost his legs in an IED explosion in Afghanistan. “People may think it’s the most strangest thing that I’m saying, but I think that getting blown up is one of the best things that’s happened to me. I’m such a different person than I was. Before I was a bit of a lads’ lad; now I’m more focused, more determined, and everything, to achieve what I want to achieve, like getting to the Paralympics, and progressing on from there.” I can understand that. I’d prefer not to have MND. I’d rather not have the prospect of gradual decline and eventual fall. But what a gift to discover, for example, that, as I become more of a useless “burden”, it doesn’t even occur to my family and friends to stop loving me! In fact they want to carry me. And it’s incredibly liberating to discover that my value lies not in what I do, however impressive, but in what I am, warts and all.
I once made a list of where I’d found God’s love in my disability. It began at home with the unconditional love of my family, and continued with the faithfulness of friends and the kindness of strangers; the care of professionals and MNDA volunteers. There’d been instances of unexpected provision over and above my needs. Then I recalled moments of beauty, like dew-bejewelled spiders’ webs, and moments of truth, when the Bible seemed to speak. And crucially the gift of bread and wine received as Christ’s body and blood given for me came to rescue me when my mind staggered and gave up.
I, like Peter Dunning, am a different person from who I was. I’m conscious of the mist, of the mystery that is God’s love. I wouldn’t now insist that everyone takes my route to Cornerstone. There are more paths than I’ve explored. I’ve found his love in unexpected people and paces. In fact, in a profound way, life has become more exciting, more of an adventure. I suppose I focus on what’s within my range, like the flowers in the trough, harbingers of spring, bursting with hope, those eight signs of God’s love given to me. Meanwhile I love Tennyson’s pilot, guiding his boat into harbour, whom he hoped to see face to face, when he had crossed the bar. St Paul spoke of love: “For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known.”
*******
Michael, Jane, and their friend.
Michael Wenham has a rare form of Motor Neurone Disease (PLS – Primary Lateral Sclerosis).  He is author of My Donkeybody – living with a body that no longer obeys you(Monarch, 2008) and co-author with Jozanne Moss of I Choose Everything (Monarch, 2010). He is retired and lives in Oxfordshire, with Jane his wife.  He has four adult children and three grandchildren.   
He blogs at Diary of a Donkeybody and at Room with a View.


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Comments

  1. Steve Martin says

    March 3, 2012 at 1:53 pm

    Thanks for an inspiring and honest post about the trouble you have in this world.

    I guess we all have it. Not to the extent that you do. But we are all in the process of dying, in one way or another.

    For me, I take great comfort in Romans 6, where St. Paul tells us that we are already dead. Put to death from this life in our Baptisms. But we have been raised again (already).

    I pray that the Lord will encourage you, and comfort you, and bring you more opportunity to encourage others in the faith, as you have done with me.

    Thank you.

  2. Chelliah Laity says

    March 3, 2012 at 11:49 am

    This is a fantastic post. Your ability to look for God among strife is inspirational to all. You have far more than so-called 'able bodied' people do, loving community, family and friends. Without wanting to be patronising I all, I do admire your faith and take on life.

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anita.mathias

Writer, Blogger, Reader, Mum. Christian. Instaing Oxford, travel, gardens and healthy meals. Oxford English alum. Writing memoir. Lives in Oxford, UK

Images from walks around Oxford. #beauty #oxford # Images from walks around Oxford. #beauty #oxford #walking #tranquility #naturephotography #nature
So we had a lovely holiday in the Southwest. And h So we had a lovely holiday in the Southwest. And here we are at one of the world’s most famous and easily recognisable sites.
#stonehenge #travel #england #prehistoric England #family #druids
And I’ve blogged https://anitamathias.com/2020/09/13/on-not-wasting-a-desert-experience/
So, after Paul the Apostle's lightning bolt encounter with the Risen Christ on the road to Damascus, he went into the desert, he tells us...
And there, he received revelation, visions, and had divine encounters. The same Judean desert, where Jesus fasted for forty days before starting his active ministry. Where Moses encountered God. Where David turned from a shepherd to a leader and a King, and more, a man after God’s own heart.  Where Elijah in the throes of a nervous breakdown hears God in a gentle whisper. 
England, where I live, like most of the world is going through a desert experience of continuing partial lockdowns. Covid-19 spreads through human contact and social life, and so we must refrain from those great pleasures. We are invited to the desert, a harsh place where pruning can occur, and spiritual fruitfulness.
A plague like this has not been known for a hundred years... John Piper, after his cancer diagnosis, exhorted people, “Don’t Waste Your Cancer”—since this was the experience God permitted you to have, and He can bring gold from it. Pandemics and plagues are permitted (though not willed or desired) by a Sovereign God, and he can bring life-change out of them. 
Let us not waste this unwanted, unchosen pandemic, this opportunity for silence, solitude and reflection. Let’s not squander on endless Zoom calls—or on the internet, which, if not used wisely, will only raise anxiety levels. Let’s instead accept the invitation to increased silence and reflection
Let's use the extra free time that many of us have long coveted and which has now been given us by Covid-19 restrictions to seek the face of God. To seek revelation. To pray. 
And to work on those projects of our hearts which have been smothered by noise, busyness, and the tumult of people and parties. To nurture the fragile dreams still alive in our hearts. The long-deferred duty or vocation
So, we are about eight weeks into lockdown, and I So, we are about eight weeks into lockdown, and I have totally sunk into the rhythm of it, and have got quiet, very quiet, the quietest spell of time I have had as an adult.
I like it. I will find going back to the sometimes frenetic merry-go-round of my old life rather hard. Well, I doubt I will go back to it. I will prune some activities, and generally live more intentionally and mindfully.
I have started blocking internet of my phone and laptop for longer periods of time, and that has brought a lot of internal quiet and peace.
Some of the things I have enjoyed during lockdown have been my daily long walks, and gardening. Well, and reading and working on a longer piece of work.
Here are some images from my walks.
And if you missed it, a blog about maintaining peace in the middle of the storm of a global pandemic
https://anitamathias.com/2020/05/04/a-mind-of-life-and-peace/  #walking #contemplating #beauty #oxford #pandemic
A few walks in Oxford in the time of quarantine. A few walks in Oxford in the time of quarantine.  We can maintain a mind of life and peace during this period of lockdown by being mindful of our minds, and regulating them through meditation; being mindful of our bodies and keeping them happy by exercise and yoga; and being mindful of our emotions in this uncertain time, and trusting God who remains in charge. A new blog on maintaining a mind of life and peace during lockdown https://anitamathias.com/2020/05/04/a-mind-of-life-and-peace/
In the days when one could still travel, i.e. Janu In the days when one could still travel, i.e. January 2020, which seems like another life, all four of us spent 10 days in Malta. I unplugged, and logged off social media, so here are some belated iphone photos of a day in Valetta.
Today, of course, there’s a lockdown, and the country’s leader is in intensive care.
When the world is too much with us, and the news stresses us, moving one’s body, as in yoga or walking, calms the mind. I am doing some Yoga with Adriene, and again seeing the similarities between the practice of Yoga and the practice of following Christ.
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#valleta #valletamalta #travel #travelgram #uncagedbird
Images from some recent walks in Oxford. I am copi Images from some recent walks in Oxford.
I am coping with lockdown by really, really enjoying my daily 4 mile walk. By savouring the peace of wild things. By trusting that God will bring good out of this. With a bit of yoga, and weights. And by working a fair amount in my garden. And reading.
How are you doing?
#oxford #oxfordinlockdown #lockdown #walk #lockdownwalks #peace #beauty #happiness #joy #thepeaceofwildthings
Images of walks in Oxford in this time of social d Images of walks in Oxford in this time of social distancing. The first two are my own garden.  And I’ve https://anitamathias.com/2020/03/28/silver-and-gold-linings-in-the-storm-clouds-of-coronavirus/ #corona #socialdistancing #silverlinings #silence #solitude #peace
Trust: A Message of Christmas He came to earth in Trust: A Message of Christmas  He came to earth in a  splash of energy
And gentleness and humility.
That homeless baby in the barn
Would be the lynchpin on which history would ever after turn
Who would have thought it?
But perhaps those attuned to God’s way of surprises would not be surprised.
He was already at the centre of all things, connecting all things. * * *
Augustus Caesar issued a decree which brought him to Bethlehem,
The oppressions of colonialism and conquest brought the Messiah exactly where he was meant to be, the place prophesied eight hundred years before his birth by the Prophet Micah.
And he was already redeeming all things. The shame of unwed motherhood; the powerlessness of poverty.
He was born among animals in a barn, animals enjoying the sweetness of life, animals he created, animals precious to him.
For he created all things, and in him all things hold together
Including stars in the sky, of which a new one heralded his birth
Drawing astronomers to him.
And drawing him to the attention of an angry King
As angelic song drew shepherds to him.
An Emperor, a King, scholars, shepherds, angels, animals, stars, an unwed mother
All things in heaven and earth connected
By a homeless baby
The still point on which the world still turns. The powerful centre. The only true power.
The One who makes connections. * * *
And there is no end to the wisdom, the crystal glints of the Message that birth brings.
To me, today, it says, “Fear not, trust me, I will make a way.” The baby lay gentle in the barn
And God arranges for new stars, angelic song, wise visitors with needed finances for his sustenance in the swiftly-coming exile, shepherds to underline the anointing and reassure his parents. “Trust me in your dilemmas,” the baby still says, “I will make a way. I will show it to you.” Happy Christmas everyone.  https://anitamathias.com/2019/12/24/trust-a-message-of-christmas/ #christmas #gemalderieberlin #trust #godwillmakeaway
Look, I’ve designed a journal. It’s an omnibus Look, I’ve designed a journal. It’s an omnibus Gratitude journal, habit tracker, food and exercise journal, bullet journal, with time sheets, goal sheets and a Planner. Everything you’d like to track.  Here’s a post about it with ISBNs https://anitamathias.com/2019/12/23/life-changing-journalling/. Check it out. I hope you and your kids like it!
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