A week of contrasts

And I'm not talking about the weather, although here we've had foggy and overcast grey days, but also bright sun of the sort which makes you want to go on holiday, or at least have a picnic by the river. No, I'm sorry, I'm talking about the NHS again, because of course with two of us being under the doctors that's what quite a bit of our life is taken up with.

I was booked in with the GP on Monday to follow up the spasticity clinic visit. As it happened, Lesley, the physio, turned up a couple of hours before, which was helpful as I could discuss things like muscle weakness with her. I still don't quite understand but apparently the point of treatment is to reduce the "tone" of the muscles, i.e. their tightness, and that shouldn't affect things like the strength of my grip, which is important in my survival from falls! The plan would be to increase the dose from a very low base gradually, until they started to have a beneficial effect and to stop before the muscles become so relaxed my legs just give way.

So then it was off to the Doc. The big question for her was about Gabapentin, the prescribed drug, and what would happen should I need to come off it: would it increase the chance of my fitting? To which the answer was "No", provided I came off as gradually as I went on to it. A lesser question was whether it would break the practice's budget, to which the answer was also "No" as it's a generic drug which costs a sniff. Normally it's prescribed for neural pain and for epilepsy; but it also works as a muscle relaxant. So now I'm on the the gentle slope of the Gabapentine, which sounds like the eighth hill of Rome! We'll see what the view's like from the top!

Our next sally was to the wheelchair clinic at the Oxford Centre of Enablement on Wednesday. This was a most odd experience. After someone was picked up by the patient transport service, we sat alone in the waiting room for 25 minutes. Admittedly it was around 1 o'clock; but who's heard of a hospital department that's not busy? It transpired that I was the only patient the OT was seeing that afternoon. Which may explain the whole peculiar experience, which felt like wading through sand. The OT was very nice, but had no background notes, no record of my old wheelchair; come to think of it, I'm not sure she even knew I had MND. All she had was a spiral-bound notebook, a biro and a tape measure ("Ah, just like the good old days.") The appointment had been made routinely after one of the motors on my original much-loved electric wheelchair had stopped working and couldn't be replaced. In its place I'd been supplied, very speedily, with an emergency replacement. Sadly neither Jane nor I knew what the make was. The OT was right - it's a Spectra Plus (the Oxfordshire standard issue); but I was right, it has no tilt mechanism. I suppose we spent about half an hour as she dug out one control panel after another to prove that somewhere was the tilting button. Meanwhile Jane and I sat in this windowless cream room, a bit like Huis Clos. And the right console never appeared. We looked at different backs, which might stop my rightward list. In the end, we broke the deadlock by agreeing that we would go home and look at the wheelchair, while she would phone the repair people who'd supplied it in the first place. She recommended the tilting mechanism and a rather ugly (potentially helpful) back. So after an hour and a half we emerged into the sunlight - and Jane took some shopping therapy in Lidls nearby.

On Thursday I went for the ride with Jane to her trauma clinic at the John Radcliffe. Well, it might have helped her get a disabled parking space! In fact, it didn't. So the desk had the interesting spectacle of the patient pushing a man in the wheelchair. We forgave them for thinking it was the other way round. Jane had been advised to get there early, and it proved good advice. This was quite a different experience. The waiting room was large and patients were sitting scattered around, but the turn-over was slick. Check in. Sit down. Wait for 10 minutes. Called for x-ray. Sit down for 5 minutes. Called for consultation (for Jane with the consultant who admitted her) and out in 5 minutes. Next appointment made at the desk. Appointment: 12.30. Back in the car: 12.50. That's impressive, and more importantly the news about Jane's collar-bone is good. It was a nasty fracture, but now it's 90% healed and, although there'll still be some associated pain, it's now strong enough not to damage.

It was beautifully sunny in the hospital car park and we toyed with the idea of a pub lunch. However we decided against - just as well as the fog rolled in again as we hit the ring road.

Today I have to report that we've been in touch with my wheelchair OT and have agreed that I'll have a replacement tilting wheelchair with a special supportive back. So in due course it will be back to the OCE and then, thanks to the NHS, I'll be installed in a new chair (no, not the soon to be vacant seat in Canterbury!). In that connection I have to say, I think Rowan Williams, whose coming resignation was straightforwardly announced today, will be greatly missed by the Church. I liked and agreed with Archbishop John Sentamu's comment: "Despite his courageous, tireless and holy endeavour, he has been much maligned by people who should have known better. For my part he has been God's apostle for our time." I also enjoyed his reply when asked whether he "fancied" the job, "You can't be serious." I think anyone who did fancy it would be eminently unsuitable. However, I don't begrudge the Archbishop his change of responsibility in Cambridge.

Vale, Maria

If you have a memory for such things, you may remember that in June last year our friends, Jean and John, put on a successful coffee morning in aid of the MNDA just down the road in Grove. It was a lovely sunny morning and a thoroughly cheerful time. I commented here, "As well as friends and neighbours, there were four of us there who had MND at various points of progression, Jean herself, David the herb farmer, Maria the shopper, and me. Three of us were out in the garden, and, yes, we did talk about our frustrations and the lessons we'd learned, but it wasn't a moany sort of conversation. It was companionable, and at times jokey."

David and Jean both died before Christmas. Last Wednesday night, Maria too died. Maria too was a delightful person - a devout Catholic with a sense of humour and hope. It's sad to realise I shan't be seeing her again, this side of the grave. The deaths of these three local friends and Jozanne thousands of miles away bring home to me the speed and harsh reality of the usual MND. I was talking about this recently with my physio and saying how I feel almost guilty to be among the "lucky" few with a very slow form. She gently pointed out the irrationality of the feeling! She also commented on the amazing qualities such as strength that the illness brings out in the family carers. That was certainly true of Eric, Maria's husband, and Camilla, her daughter. One of my other conclusions is that I would now put a "health warning" at the start of My Donkeybody, saying it's an account of PLS, a very gradual form of MND and far from typical, so that readers don't have unrealistic expectations raised for themselves or their relatives. (At the moment it's in the appendix.) So it's vale, Maria - farewell, till we meet again.

Just visiting

I don't know what it indicates, but it seems I like writing to order. Last week my friend, Anita Matthias asked me if I'd like to write a guest post on her blog, Dreaming beneath the Spires. This is the way she describes it: “Dreaming Beneath the Spires attempts practical theology: examining the intersection of faith and daily life. It also meanders into books, writing, art, travel, gardening, motherhood and domesticity!" Its title of course echoes Matthew Arnold's description of Oxford in his elegy in memory of his friend, the poet Arthur Hugh Clough, Thyrsis, seen from Boar's Hill (between the city and the Vale of the White Horse where we live). It's a neat and humble way of adding variety to your blog, it seems to me, and probably of increasing your readership. 


Anyway, I rose to the bait and spent Friday thinking about Anita's challenge. This was the result (Tasting the goodness of God in the land of MND). 

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, for that 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. That love 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, eight gifts gratefully accepted. 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  that 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.”