When technology fails

I guess everyone with a neurological condition such as MND is familiar with the frustration when one of the technology aids we depend on gives up on us. It happened for me on Good Friday, when I couldn’t get into my lift to take me upstairs as the door wouldn’t open. In fact that evening, for no obvious reason, it relented and so I got to bed. Just one of those glitches, we thought. But no, on Easter Day, when I’d parked my wheelchair in it after church, it wouldn’t open, and we were going out for what would be a special lunch. There I was trapped in it… In desperation I pushed it with my foot and escaped.

 

That evening, the lift would do nothing. Perhaps I’d kicked it to death. So began a series of visits from engineers and three nights in my riser-recliner, two in a hospital bed and three away for my son’s wedding. I have to say the week was redeemed by our local social services who grasped my predicament and, of course, the wedding. My son married a senior hospital doctor in Bristol. It was a fabulous couple of days. At the end of the reception I had completely lost what voice I have, but I could still smile.

On returning home our joy was completed by finding a message from the maintenance contractors saying their senior engineer had a slot that afternoon: would we like him? We did like him, and even more so when he had tracked down the fault to an erratic loose wire. That night I was able to sleep in our own bed. Bliss! How much trouble a small faulty connection can cause – like faulty neurones, I suppose!

Always look on the bright side - or count your blessings

Today has been a particularly good one. For one thing it's suited me being a tad cooler. I don't want the summer to end too soon. It would be nice to have a sunny holiday.

At the moment my lift is receiving its six-monthly health check from Ashley, our regular lift engineer and emergency doctor. He is such an expert even in Pollock lifts which aren’t his stock in trade. What's more, he's a lovely guy. These regular services are one of the benefits that I receive because of my incapacity.

 

Our old Yeti

Earlier in the day we drove to our nearest Volkswagen dealer as the time is coming to change my Motability vehicle. Sadly the fashionable Skoda Yeti is no longer being produced and so I’ve done my research and decided a Touran – which is a bit bigger - is my best bet. VWs have a delay in their production, I gather, as they’re working on their emissions…. So it looks as though we’ll have to wait for a few months to take delivery. But Motability are good and should allow us to keep our Yeti until the Touran is ready. The Motability scheme which provides cars, insurance, servicing etc using the mobility component of your PIP (Personal Independence Payment, the replacement of the old Disability Living Allowance) is great – as long as you receive it. However it’s far from a foregone conclusion, these days, that if you’re disabled you’ll be allowed it. A very helpful and efficient chap called Kit steered us through the process of ordering.

Then before that I had an appointment with the podiatrist. These happen every six weeks, and I have them free on the NHS after I almost pulled a nail off a toe with my rollator a couple of years ago. I never quite know who I’ll see as our local surgery is part of an area podiatry service. But today a new rather skilled podiatrist called Lottie dealt with me. My toenails are not a pleasant phenomenon, but she soon had them sorted out. I hope she treats me again.

As we returned home for lunch and considered how much help we received, we reflected that although having MND was not a choice we’d ever ever make, I am really well provided for and have a lot to be grateful for. To cap today off, Pete and Jane, two of our best friends will be coming round tonight to have supper.

Above all and beneath it all, of course, is Jane. I read this sentence while waiting for the podiatrist: “Caring for a loved one is among the most selfless acts that can be imagined.” Yes, spot on. I’m a lucky man.

Media Christmas

Our downstairs pipes are frozen, my lift is sitting down here out of order, the snow is still confining me to barracks - but I'm warm and have enough to eat and drink. And it's beautiful outside. Snow is remarkable. Can every flake really be unique? Well, I suppose every human who's ever lived or will live is.

I heard John Bell of the Iona Community on "Thought for the day" on the Today Programme this morning. He was talking a lot of sense about our "entitlement" culture. We reckon we're entitled to get the World Cup, win the Ashes, have uninterrupted travel, whatever the weather. He said something like, Whether we're Darwinian evolutionists or seven-day creationists, we should know that we're only a small part of the universe. "So maybe when the inclemencies which other countries accept as standard begin to affect us, maybe that's for our own good. It reminds us that we are not in control, and that marvellous as we think our lives are, the life of the world is more marvellous and more important yet. And maybe, when we feel we're not getting the weather to which we're entitled, we might ponder, now that global warming is all but certain, whether the globe is getting the care to which, under heaven, it is entitled." A wise man.

I must say that the BBC seems to be giving the Christian faith a fair airing this week. On prime time TV Channel 1 they are putting on a big-budget four-part dramatisation of the Christmas story, starting tonight. From the preview articles I've read it sounds extraordinarily impressive. Tony Jordan who cowrote Hustle and Life on Mars and scriptwrites for Eastenders has researched and written the adaptation, called simply Nativity. He talked about the experience on Radio 4's early morning Sunday show and described how in the process he had moved from a position of agnosticism to believing it had really happened. Among other things, evidence from NASA about the nature of the star had impressed him. I suspect he's quite an intelligent man, looking closely at the evidence. Would that more people were willing to do the same!

Mary on the road (BBC website)

I'm looking forward to seeing the familiar narratives come alive in a fresh way. I'm hoping that there will be imaginative characterization but not great liberties with the recorded events. The good thing is that the events are so well known that we'll recognise when they're departed from - won't we? Was there really a donkey?? Or camels?? Etc, etc. Frankly I don't think it matters. What matters is that teenage Mary carried God in her womb and held Him in her arms.
http://www.bbc.co.uk/programmes/b00x1699

PS The lift has been mended. I'll be able to go to bed tonight. Thank you, Oxfordshire Social Services. Keep up the good work.

Failing lifts and shooting stars

Last night our famous lift gave a loud kerplunk as it reached the bedroom. Ominous! Anyway it went down all right. And took me safely down this morning - but half the floor was hanging off. Clearly it wouldn't have made the round trip again. Thank you, Lord, for Claire, my OT, who'd had the foresight to arrange a service contract when it was installed.... By lunchtime an engineer had been round, replaced a broken spring and serviced it. It's purring beautifully again. 


Also last night I gather if we could have seen them there was a spectacular display of up to 100 shooting stars an hour in the Perseid meteor shower. It reminded me of one of the best modern worship songs, which we sung a number of times at New Wine last week. It's Beautiful by Phil Wickham. The second verse is quite like a psalm: "I see Your power in the moonlit night
Where planets are in motion and galaxies are bright
We are amazed in the light of the stars
It’s all proclaiming who You are
You’re beautiful, You're beautiful."

I remember we used to watch them from the top of the field above Lake Windermere at the Pathfinder camp. There was so little light pollution there seemed far more stars in the sky, and the shooting stars would career suddenly across the darkness. Amazing.

from National Geographic

I think Phil Wickham is right in his song: he writes about seeing the beauty of God in creation, the vastness of the universe and Jesus' love in the crucifixion, and looks forward to meeting it head on 'where death is just a memory and tears are no more'. A friend of mine isn't quite sure whether he's a believer, but, he said to me today, 'someone (something?) made all this happen'. That's for sure. And it has to be more than a something, doesn't it? Of course it does. It has to be beautiful God Himself.

The night before the night before

Had a different night on Monday. We camped in the sitting room. You see, the lift got stuck. This time it wasn't a mechanical breakdown; it was the occasional thing that happens. We forgot the electric chair (which lives in the lift) was on charge, and we called it down and suddenly heard an ominous clunk. Jane rushed to the controls, pushed the red button and it shuddered to a halt three inches from the floor, with the chair suspended by its cable and the cable trapped in the lid. Jane managed to release the chair, which leaped down with a bang. She had to release the lift with button in the emergency box outside. The trouble was the cable wouldn't be pulled up into the bedroom - until Jane had a brainwave, which was to cut through it. Snip! Then she pulled it up. However even then it wouldn't respond to the 'up' button. It was well and truly stuck.

So the only remedy was to sleep downstairs, me on the sofa, with my feet in the air, and Jane on the sofa-bed. I slept surprisingly well, Jane not so well. But we proved it was possible. In the morning we rang the engineer, who rang back and talked her through various procedures - and then, suddenly, lo and behold, it took off and was back in action. Last night we were back in our bedroom - bliss!