Anita Mathias: Dreaming Beneath the Spires

Anita Mathias's Blog on Faith and Art

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

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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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  1. 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. 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.