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!
MND Musings - This is a record of a chronic illness, Primary Lateral Sclerosis, a Motor Neurone disorder, like a slow MND / ALS. My body may not be very cooperative; in fact it's become as stubborn as a donkey, but I'm not dead yet.
Wednesday, 8 July 2009
The day after the night before
I listened to the end of the Lords' debate on the Falconer amendment last night (in fact I watched on line). In the event it was defeated by 194 to 141 - a bigger majority than when Lord Joffe's Bill was debated in 2006. To be honest, I heard the result with mixed emotions: mainly relief that a bad piece of legislation hasn't gone any further, but also sadness for Debbie Purdy who had great hopes personally that she could be free from concern for Omar, her husband, if she ever went to Zurich to die. From what Lord Falconer said in his summing up I think she can be free of that as it is: ' The current situation is that the DPP (Director of Public Prosecutions) has made it clear that he will not seek out these cases to investigate. If the cases come before him, he will ensure that they are properly investigated and, as long as he is satisfied that there is good motivation, he will not prosecute.' I hope she believes him, because I have no doubt about her good motivation, much as I regret where she feels it leads.
However, I trust that this is not the end of the discussion. Oddly enough, I think an article in Monday's Independent by Lord Lester, one of the amendment's supporters, might be a good place to start again. In it he said, 'Like many others, I believe that we need a legal framework which would allow doctors and nurses to be able lawfully to treat terminally ill patients to relieve their suffering as well as pain, even though it would be a virtual certainty that the treatment would shorten their lives.' To which I would say, 'I agree - depending on what you mean exactly.' For example, what do you mean by suffering? A large element in suffering can be fear - and a lot of fear associated with dying can be unnecessary on a purely physical level. Not all 'suffering' is negative. For example, unresolved conflicts can greatly disturb a terminally ill person - but the remedy for them is not premature death but positive resolution. The 'legal protection' we need is both for the carers and the cared for. It's there at the moment, imperfectly but effectively. Doctors fear litigation if in good faith they administer pain relief which has the effect of shortening life; patients fear being precipitated into death instead of receiving potential life-prolonging treatment. There's work to be done.
There's one other caution, I think, we need to make and that is, some things go beyond laws. I seem to remember that was a point Michael Sandel made in his last Reith lecture. You can tinker with laws till you're blue, or red, in the face; but unless we have a shared attitude in society, not just on issues, but about the sort of society we want, i.e. the underlying values we believe in, we are on to a loser. That's the real agenda.
However, I trust that this is not the end of the discussion. Oddly enough, I think an article in Monday's Independent by Lord Lester, one of the amendment's supporters, might be a good place to start again. In it he said, 'Like many others, I believe that we need a legal framework which would allow doctors and nurses to be able lawfully to treat terminally ill patients to relieve their suffering as well as pain, even though it would be a virtual certainty that the treatment would shorten their lives.' To which I would say, 'I agree - depending on what you mean exactly.' For example, what do you mean by suffering? A large element in suffering can be fear - and a lot of fear associated with dying can be unnecessary on a purely physical level. Not all 'suffering' is negative. For example, unresolved conflicts can greatly disturb a terminally ill person - but the remedy for them is not premature death but positive resolution. The 'legal protection' we need is both for the carers and the cared for. It's there at the moment, imperfectly but effectively. Doctors fear litigation if in good faith they administer pain relief which has the effect of shortening life; patients fear being precipitated into death instead of receiving potential life-prolonging treatment. There's work to be done.
There's one other caution, I think, we need to make and that is, some things go beyond laws. I seem to remember that was a point Michael Sandel made in his last Reith lecture. You can tinker with laws till you're blue, or red, in the face; but unless we have a shared attitude in society, not just on issues, but about the sort of society we want, i.e. the underlying values we believe in, we are on to a loser. That's the real agenda.
Monday, 6 July 2009
One of my favourite things?
Apropos of the picture below, Stephen asks why Big Al is wearing a 'sash'. Well you may ask! Did he win the accolade of outstanding ordinand of 2009 (the OO factor)? Or maybe it's just one of 'his favourite things' - in his case white satin sashes? In fact 14 out of the 17 of the deacons were all wearing pale cream bandaleros (or stoles, as they're known in the trade - which I think means an item of clothing (stola - Latin)). So probably the question to ask is why the others WEREN'T wearing them. But to be honest, they don't seem to serve a useful purpose, except to give employment to seamstresses. Maybe it's the difference between wearing a tie and an open-necked shirt. I'd recommend the latter, as some people get hot under the collar about what vicars wear.
On a more serious note the Lords are due to be debating Lord Falconer's amendment to the Coroners and Justice Bill TOMORROW. Personally I trust that they decide to give the whole issue of assisted suicide a fuller debate, rather than just think about the few who can afford or want to go to Switzerland.
On a more serious note the Lords are due to be debating Lord Falconer's amendment to the Coroners and Justice Bill TOMORROW. Personally I trust that they decide to give the whole issue of assisted suicide a fuller debate, rather than just think about the few who can afford or want to go to Switzerland.
Three, two, one
Or should that be beacons? Signals of light bringing good news to a frightened dark nation. The one on the left in soft focus (caused by a finger-print on the lens - sorry) is Big Al, centre, and right are Jo and James, the dynamic duo, a real bargain at two for the price of one. In all 17 deacons were ordained in Guildford (deacon comes from the Greek for servant, in case you wanted to know). I don't know why they are told to dress up in those peculiar clothes; it really doesn't do anything for them. Personally I don't think it does anything for the credibility of the Church either. But it's true, it wasn't so long ago that I was dressed something like that. I just wish they'd change the rules soon. Sometimes being in a wheelchair has its advantages and yesterday I enjoyed them: parking right next to the Cathedral, and a prime position to see the ceremony. To be honest, I didn't find the building as impressive as some people. It's tall and big and uncluttered, but it just didn't do it for me, I'm afraid. Not like the hotch-potch of humanity with whom Jesus intended to replace the Temple building.
Well, it was a long day, and Jane who drove both ways was tired when we got back, but at least Federer and Roddick were kind enough to extend their epic struggle in the Finals so that we could watch a good chunk of it. It was appropriate that breaking the record was achieved at such a cost, but I did feel sorry for Andy Roddick who had given everything and come so close to winning. But the hard fact is there could only be one winner - and congratulations to Mr Federer, who did not give up.
Saturday, 4 July 2009
Triple whammy
Well, I listened to the Lions today. Sounds as I was right: the Lions' pride (Get it?) restored. They fairly walloped the Springboks. On fact their total points in the Tests were more than South Africa's. I know that doesn't count, and it's only a game! More exciting than the Ladies' Final at Wimbledon which was happening at the same time. But I did see most of the Men's Doubles, which was a humdinger. By the way if you wanted to see the game of tennis being enjoyed to the full, the best was the old men, Bahrami and Leconte against Armitraj and Fitzgerald - it was sheer skill, good humour and entertainment. It was men playing for the love of the game. Sport.
Tomorrow, we're back to more solemn matters, but no less enjoyable, I hope. We're off at an early hour to see three friends being 'ordained' in Guildford Cathedral - three in one go, not bad! Ordained is like being made an NQT (newly qualified teacher) in the vicaring business. They're Alan, James and Jo - all of whom gave up perfectly good careers for this poorly paid vocation. Well, it must be - a vocation, mustn't it? And by the way, they aren't over 50 either. Which also proves my point, doesn't it?
Tomorrow, we're back to more solemn matters, but no less enjoyable, I hope. We're off at an early hour to see three friends being 'ordained' in Guildford Cathedral - three in one go, not bad! Ordained is like being made an NQT (newly qualified teacher) in the vicaring business. They're Alan, James and Jo - all of whom gave up perfectly good careers for this poorly paid vocation. Well, it must be - a vocation, mustn't it? And by the way, they aren't over 50 either. Which also proves my point, doesn't it?
Thursday, 2 July 2009
MacTrebor mania
In case you're wondering whether I've been watching Wimbledon this year or not, I have to admit I have. I fell asleep one afternoon. There's something soothing about the pop-pop of the ball interrupted by the occasional squeak. The games I don't much like are those accompanied by chauvinistic hysteria in the stands. I've taken a self-denying ordinance not mention Robbie MacTrebor in my blog. So I'm sorry if you were hoping for it. I will not be moved.
Bits and pieces
First a bit of good news and an apology. The wheelchair people arrived at 9.30 am on the day they said they would. So I take back my whinge (in practice if not in principle - I still think it's not beyond the wit of management to give SOME idea of time). However that pales into insignificance compared with what a friend has told me about her husband who's in a nursing home, with dementia. The wheelchair he went in with was used for all and sundry, and soon trashed - footplates gone, brakes broken. I well believe it. It's an all too common occurrence. So she ordered a comfortable replacement with footraising, head rest etc so that he wouldn't have to be confined in the home's rather hard chairs all day. That was last February. It's still not come, and when she rang recently she was told there'd be at least a 30-week wait. So I want to apologise for giving the impression that things are all rosy in the health service garden. If you read Al's last comment, you'll discover that's far from the truth. I must say it irks me that because I have MND I seem to get good and rapid attention, whereas people like my friend's husband, whose condition is just as acute as mine but without the 'terminal' tag, get treated as non-urgent. I know it's 'a matter of resources', but bailing out the banks, replacing Trident, paying MPs fat pensions... how many wheelchairs and technicians could you get for all that?
I had something of a bitty Sunday. It started off OK with the young people at our church leading worship, five long-haired teenagers (male and female), exploding the myth that churches are full of people aged 50 and above and cubs and brownies. It just ain't true.
Then in the afternoon I kept out of the sun and watched the test match between the British Lions and South Africa. Peter had recorded it for me on Saturday, but hadn't told me the result. What a game! Talk about hammer and tongs - and some other instruments of torture. It wasn't the fairest match, but was the firiest I've seen for a long time. And what an ending - heart-break! Watch the Lions hit back on Saturday. Compelling viewing.
Which is more than can be said for 'Songs of Praise' these days. What HAS happened to it? Is it sponsored by the British tourist boards? It seems a cross between scenic photography and the myth-making I was talking about just now. On Sunday it was from Belfast. Where was REAL church? The adults looked as though they were dressed for a funeral, all in black, or purple, or dark turquoise. I've NEVER seen a congregation like it. And as for their singing that great modern song of praise, In Christ alone (good choice!), it was like a dirge. And the kids, who looked considerably happier, from the junior choir of the year were all neatly posed beside the prettified Belfast dock. It seems the programme needs a consultant who really knows where it's at in the contemporary church. Even the interviews seem to have become rather banal too. Shame.
Then came 'Revelations' on Channel 4, which was about the Alpha course, the introduction to Christianity which has become a worldwide phenomenon. It was filmed in Oxford; in fact Jane and I were at St Aldates Church on the last day of filming. The result was a curate's egg, good in parts. It wasn't as dispassionate as it purported to be. There were odd inbalances, such as a long time filming a participant exploring the supermarket skips for bargains, and the curious incident of the unrecorded loss of temper, and the tangentially connected archive film from Toronto. I admired St Aldates for allowing the crew in, unlike 10 other churches, we were told. Whether they regret the final result I don't know. But you do put yourself at the broadcasters' mercy when agree, as we found, though I suspect we fared better. (Maybe it's the difference between the BBC and independent companies.)
I had something of a bitty Sunday. It started off OK with the young people at our church leading worship, five long-haired teenagers (male and female), exploding the myth that churches are full of people aged 50 and above and cubs and brownies. It just ain't true.
Then in the afternoon I kept out of the sun and watched the test match between the British Lions and South Africa. Peter had recorded it for me on Saturday, but hadn't told me the result. What a game! Talk about hammer and tongs - and some other instruments of torture. It wasn't the fairest match, but was the firiest I've seen for a long time. And what an ending - heart-break! Watch the Lions hit back on Saturday. Compelling viewing.
Which is more than can be said for 'Songs of Praise' these days. What HAS happened to it? Is it sponsored by the British tourist boards? It seems a cross between scenic photography and the myth-making I was talking about just now. On Sunday it was from Belfast. Where was REAL church? The adults looked as though they were dressed for a funeral, all in black, or purple, or dark turquoise. I've NEVER seen a congregation like it. And as for their singing that great modern song of praise, In Christ alone (good choice!), it was like a dirge. And the kids, who looked considerably happier, from the junior choir of the year were all neatly posed beside the prettified Belfast dock. It seems the programme needs a consultant who really knows where it's at in the contemporary church. Even the interviews seem to have become rather banal too. Shame.
Then came 'Revelations' on Channel 4, which was about the Alpha course, the introduction to Christianity which has become a worldwide phenomenon. It was filmed in Oxford; in fact Jane and I were at St Aldates Church on the last day of filming. The result was a curate's egg, good in parts. It wasn't as dispassionate as it purported to be. There were odd inbalances, such as a long time filming a participant exploring the supermarket skips for bargains, and the curious incident of the unrecorded loss of temper, and the tangentially connected archive film from Toronto. I admired St Aldates for allowing the crew in, unlike 10 other churches, we were told. Whether they regret the final result I don't know. But you do put yourself at the broadcasters' mercy when agree, as we found, though I suspect we fared better. (Maybe it's the difference between the BBC and independent companies.)
Subscribe to:
Posts (Atom)