First of all let me introduce myself and the easiest way I could think of was to include a short profile which you will find here.
The following notes were never initially intended for a blog, but form part of the ‘Let me show you my scars’ chapter of the autobiographical notes that I have prepared for my family. Speaking of family I must warn the reader that my wife Alice is referred to in this blog as Al. Alice or occasionally as ‘my lovely’.
As the material was originally intended for the family it contains extraneous information which I have not bothered to remove as it makes the note less formal and more human. In any event I am including every day activities and social events so as to show to the reader what I can do one day and what I might find more difficult further down the track. I have also anonymized this version to eliminate the names, of the various doctors and consultants I have seen in connection with the MND, other than the two doctors and support nurse currently looking after me.
The purpose behind this blog is to give succour and comfort to other MND sufferers (and even those suffering from prostate cancer as I have a history of that built into the blog) – Caring through Sharing. Nil Desperandum and Carpe diem (Live for the day) and all that! I hope that some of my ideas and gadgets may give inspiration to others.
The main section on this blog is as you can see in the form of a diary. It starts at a time when I was initially diagnosed and records significant events in the progress of the disease as well as the effect on my day-to-day life.
I shall add to the diary from time to time when I have something interesting to say, or something significant has occurred. The diary itself is fairly lengthy but it is ESSENTIAL THAT NEW READERS READ IT in order to get the background to the subsequent entries. I should also add things that are not immediately apparently significant to other people maybe if one is suffering from MND.
In order to leaven the bread, so to speak, I have added an anecdote link and will, from time to time, pluck some amusing event or inspirational story from my autobiographical notes. I have started this link with two such anecdotes which you might find of interest.
Friends, who are only interested in checking on my state of health must excuse the mundane references to social events and the lavatorial activities. These are included, from a date around 18 months since my diagnosis, to give comfort to fellow sufferers. To show them what is still possible, perhaps with some degree of ingenuity, and therefore, what might not be possible in a few months time.
Then there is what I call the ‘readers page’ where you can share your ideas with me and other readers of this blog. I reserve the right to consider the content of any such contribution before it appears on this readers page. Any contribution should be addressed to dmarkcato@hotmail.com
I would be particularly interested to hear from readers who suffer from loss of use of hands. For example, arthritis sufferers or people who've had a stroke or even to thalidomide victims, some of whom have no hands and from whom, no doubt, I could learn a great deal. Well I hope we all get something out of this blog and I look forward to hearing from the readers.
Professor D Mark Cato
14 May 2009
PS 21 September 2009
This blog has been running now for around five months and the response has far exceeded my expectations. We have had around 65,000 hits to date, not only from the UK but from other parts of the world as well. Heart warming responses have come not only from other sufferers but also from carers. Even more exciting is the fact that the responses were not limited to MND patients. People connected with the terminally ill or friends or loved ones suffering from. long-term illness also seem to have found some inspiration from the blog. For this reason I have shortened the blog title to ‘Dying to Live’. in the hope that the content will continue to appeal to a wider readership.
In this regard than I ask each reader to consider passing on the blog address to their list of friends and relatives in the hope that someone, somewhere, will know someone who could benefit from the experience and draw comfort or support from the content or perhaps a little, much needed, momentary light relief from the anecdotes and jokes.
Latest Diary Entries
I managed OK after my fall yesterday, so no real harm done. However I’m rethinking the two visits that I was going to make to the Arbitration Club, in London in London next week. Keith Kirkwood was originally intending to accompany and assist me but now, unexpectedly, has to go to New Zealand on business and I’m not sure that I could trust anyone else who has not had the experience already. Also Keith’s absence is a blow for the 20th Anniversary Dinner all the Arbitration Club, scheduled for the 23rd September, because he is the organizer and todate, apparently, he has only received 56 firm bookings. For the 15 years of I ran the dinner I never failed to fill the 225 places in Drapers Hall. There is still another three weeks so I suppose I might be being a little pessimistic but I have every confidence that KeIth has, and is, doing his very best to fill the place.
Readers will remember the saga of getting the Essex County Council to agree to provide a fingernail cutting service for the elderly of the county, through the good intervention off Sir Alan Haselhurst MP. In mid-July I received a letter from the Essex County Council which in essence said that the matter was not as straightforward as we were led to believe when told that this service would be introduced.
I telephoned the Official concerned yesterday but as told, in true bureaucratic style, that there is still some negotiating to do with the Patients Can’t Trusts [PCT's] before the service will be up and running. The big problem to resolve is whether or not the podiatrists will be able,or indeed allowed, to cut fingernails as well as the toenails. No doubt this will require a number of committee meetings!.
The other episode with which I had to deal with today was the unsatisfactory business of my visit to the community hygienist to have my teeth de-scaled, which turned out to be a fiasco. (See 12 & 26 July entries). As instructed, today I telephoned the Tooth Fairy (Teeth Commissioner) to whom my private dentist has already reported the facts. By the sound of it there will almost have to be a public inquiry before I get my teeth seen to. Again maybe I’m being a little pessimistic but we will see.
No sign yet of my laptop. I must say I am disgusted with Toshiba for charging almost £400 to deal with the slight spillage of tea on the keyboard. I do not know precisely what the ‘repair’ involved except I did hear mention of a system board. Even so the cost of these components to Toshiba must be minimal and to charge an amount which exceeds the price you would pay for a brand-new computer with 320 gigs of hard disk and three gigs of RAM seems to me to be scandalous.. But then what choice does one have?
Apologises to my readers for this whingeing, rather negative, entry but then, as we all know, it’s good to get these things off your chest.
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31 August 2010
Yesterday was the August Bank holiday Monday, At one stage, we had thought it might have gone out and had lunch and then decided that the world and his wife would also be on the same track and opted for required then returning catching up. Tuesday’s come round fast and I was off again for another ride round the golf course. This week (Sir) George Bull very kindly gave me a lift. A fine day but rather like last week, autumnal. Unfortunately, I had a rather frightening collapse going into the clubhouse both legs went as if it had not been for three strong helpers I could well have been in trouble. I must say it gave me a real shock and I even found it hard after that to feed myself at lunch. (Good old George helped out) In the afternoon, at home, I was fearful about going down the ramp from my office on my frame, basically I had lost my confidence. However, after a good night sleep, and a bit of teeth gritting, I am pretty well back where I was before, but for how long? I also asked myself how much longer I am going to be able to manage the the Tuesday geriatric day.There is even a limit to the amount of help I can ask, or expect, from the good members Royal Worlington.
I have been so occupied recently that I missed another milestone in this blog. That was a 700,000 hit mark, which must occurred around a week ago as we are now in excess of 715,000 hits. I think my readership has settled down now and remains fairly constant as every time I quiz a member of the family or a friend, about the blog, they rather shamefacedly admit that they have not looked at it recently, so I often wonder where the other 2500 or so hits a day come from
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Being a Bank holiday weekend, Chloe, Karl on the three little ones came down to spend the weekend with us. Fred, the oldest, had a very special treat by being taken to Lord’s on a Saturday which as I explained to him was probably one of the best days cricket cricket he will see in his life. My dear nephew, Tom Grand, made the trip all the way down from Aberdovey in North Wales to be with us -it was great to see him.. Sadly, the family left shortly after breakfast on Sunday so I saw very little of them but what I did made me very proud. They are all coming on so well. Fred starts his new school, St. Dunstan’s,. in September, and little Lara her school career at the same time, at Rosemead Primary School, where the boys have both been.. She is terribly keen and had made a wonderful diary of her recent summer holiday ,so I’m sure she will do very well at school. I was also extremely impressed with Seb’s beautifully written and illustrated daily diary which all pupils actually schooled are encouraged to keep during the holidays..
Over the three days the usual gang turned up including Dr. James Snowden Barnett, Paul Newman and Roger Goldwin-who was stars when it came to taking me to the disabled loo – M.C.Patel; Anthony Bains-Walker and his mate ‘Col. Bill.’ and, on the lawn, Bob and Geoff. Lederman, as always, generously feeding and watering all and sundry.
A delightful incident occurred on Saturday. Bob Lederman’s niece (Ann) was proposed to by Major Ceri John of the Royal Logistical Corps, in the Coronation Garden, opposite the Warner Stand whilst they were sitting on the memorial bench of Annie’s father (Gerald)..,,lots of tears and excitement, together with plenty of pink champagne made the day memorable.
p.s She accepted !!!!!
I spent the time from arriving at Gate 6, to the time I left, in my own wheelchair. Apart from the fact I think I would find it too far to walk on my frame, this gave us access to the wheelchair enclosure at the front of the Warner stand which was a prime position. If nothing else then my disability may be popular for this reason only with the boys who have been looking forward four years to the time when one of us would end up in a wheelchair and get this privileged treatment!
As Graham delivered the final part of the Mugs Guide today, that part covering what I call the Add Ons Anecdotes; Photographs Jokes; and Videos, I decided I would try some out for myself
As Graham delivered the final part of the Mugs Guide today, that part covering what I call the Add Ons Anecdotes; Photographs Jokes; and Videos, I decided I would try some out for myself
Irish Millionaire
Deaf Wife
The Parrot Died
Demolition call
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Not one of my better days. Firstly, my electric UpEasy cushion failed and will need to go back to the manufacturer’s for repair and heaven knows how long that take. In the meantime we will have to cope with the manual one.. Thank heavens I bought two. On top of that I found out, by persistent telephone calls, that Toshiba have not yet started to repair my laptop but are waiting for me to approve their estimate of almost £400. That seems a ridiculously large amount to have to pay for spinning a little tea over the corner of the keyboard but these people have you over a barrel and there is no choice but to pay.
Fortunately, the MND Association have generously offered to cover the cost of the repair but clearly I would not get the laptop back for another week or so.
Last week I took out a travel insurance policy to cover of the forthcoming visit to Thailand. Having declared by medical conditions the premium quoted by Saga was just under £200. Yesterday, I got an alternative quoted from getmytravelinsurance.com, virtually the same cover for £131. A reasonable amount to cover any medical expenses, including any arising from my present condition, and even covering the cost of bringing my body back if the worst should happen. Accordingly, I invoked my right under the Saga policy, to cancel it within the 14 days and to receive a full refund
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I arrived at the golf club today, having been driven by Kit, and need to find that ‘my lovely’ had forgotten to include my bag of tricks this for eating and drinking. She discovered before I did and poor old thing went to enormous expense in sending them by taxi as she knew how much I relied on them. Actually, I could have managed if someone had been prepared to feed me and I have been provided with a straw for drinking. However,’ my lovely’, being characteristically generous would not even consider inconveniencing me that way and to hell with the expense. What a girl! The weather was sunny but with a chilly breeze. Certainly autumnal. This year seems to be a repeat of last year when we had our summer in April and May. I am really concerned because I have three days at Lord’s starting on Thursday with two guests each day. It does not take much rain to stop play and with me being stuck in a wheelchair it’s not likely to be much fun.. I do hope I’m wrong as this test match could be a nail biter.
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My 2 mnthly check out at Papworth Hospital today after sleeping, last night attached to the Oximeter which, I understand, is designed to measure the amount of saturated oxygen in the lungs whilst one is asleep.
On the whole the results were fairly predictable. A general deterioration all round with a rather more serious drop, from 74% to 64% in my FVC. All of this indicates that I will almost certainly require some form of oxygen intervention sooner rather than later. I specifically raised with the doctor the business of flying to Thailand and he advised me to try not to sleep and also not to lie at lower than a 45° angle. I explained that the help on traveling business class was to have a flat bed. As the flight from London to Dubai is approximately 8 1/2.hours, with the two or three hour gap between the next onward flight to Bangkok, again another 8 1/2.hours, it is difficult to see how I am goinging to be able to keep awake for the 36 hours or so from door to door. In the past I’ve always had a generous supply of champagne before taking a couple of sleeping tablets and then lying flat for a few hours sleep. I would like to think I can do the same again.
The problem, as explained to me by the doctor, is that the amount of oxygen at 35 to 40,000 feet is around 15% lower than normal. Then, when you sleep you breathe more shadowly,again taking less oxygen, so with someone with weakened lung muscles there is a danger of a buildup of carbon dioxide. Maybe I can persuade the airline to let me sleep with an oxygen mask. I shall ask the doctor what he thinks about this idea.
I also raised the question of the possibility of having a diaphragmatic insert to assist my breathing. The Dr. explained that this was something that wasrecently invented in the US and he suspected that not many more than 40 such operations have taken place there. Apparently a hospital in Sheffield has begun attempting these procedures but again the operation is very new and in his opinion unproven. However, he will bear in mind the fact that I would be prepared to consider being a guinea pig if the opportunity arose and, indeed, I needed such invasive assistance.
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As my computer has decided to behave itself again I am attempting another entry. There has been a complete shambles over the election of trustees to the MND Association. I submitted my application form, supported by two trustees, well before the closing date of 11th. of June. I completed the form online and then pressing the ‘Submit’ button at the bottom of the form. I naturally assumed that this had been received but I never actually got a formal acknowledgment. I suppose, in that respect, I was at fault, although at the time I was fully engaged in other business.
You can imagine my surprise then when I received a ballot form on Friday that did not include my name. Fortunately, I was able to to check on my computer and confirm that I submitted my application at 12.01 on 6 June.. Naturally, I contacted the Association and this started the hare running. I must say they took the matter very seriously and acted very promptly, taking advice from solicitors, auditors etc.. I felt very embarrassed at having caused this disruption in their normal working programme and, of course, the added expense of seeking advice. However, clearly something went wrong which needs to be avoided in the future.
After several discussions with the Vice Chairman of Trustees, I decided it was in the best interests of the Association if I withdrew my application and hope, without any guarantee of course, that I might be to co-opted at the first available opportunity whilst I am still strong enough to make a contribution.
. More bad news, England lost the third test to Pakistan by four wickets. Having said that, it will make the fourth test, at Lord’s, starting next Thursday, more interesting. With England being to 2-1 up in the series, it leaves the intriguing possibility of Pakistan achieving a drawn series, I believe, for the first time ever.
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Utter frustration, there is a 30 sec. delay between me dictating and the text appearing on the screen. For this reason I shall await the return of my newer laptop, hopefully, on Monday, before making any further entries. In the meantime, I thoroughly recommend reading the account of the Swedish trip – 1Aug-14 Aug
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Not a very auspicious start to my 77th. year. I managed to fall off the bed, at 5 a.m., banging my head heavily on the floor. It ‘my lovely’ almost 1 hour to get me up and back into bed, using a series of low chairs and the rising mechanism on the NHS bed No harm done except for a grazed shin. Later in the day my legs gave way in the hall and again I crashed to the floor. This time we had to elicit the assistance off to build a working opposite to get me onto my feet again. I hope that this is not the beginning of the end for my legs and that they were both just freak accidents.
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Another milestone. I made it !! It Is my 76 birthday today. The sun is shining and the weather is fine, unlike yesterday when I went to the geriatric golf day and spent much of the time sheltering, from the drizzle,.in Griggs’ buggy. Today, however was to be entirely different – a sunshine day. Both ‘children’, Miles and Chloe, came down from London to celebrate the occasion. Smiler, very kindly shouted us lunch at the Axe and Compass’ in Arkesden – very good it was too. We then sat, in the garden, in the sunshine, chatting with me smoking one of my best cigars, before ‘my lovely’ produced a scrummy chocolate birthday cake. Jane (the sheep) kindly called in, to wish me a happy birthday, and so joined us for tea.
I also had a number of telephone calls, during the day, wishing me a happy birthday, as well as half a dozen e-mails on the same business. How very kind of people to remember and take the trouble.. Personally, I am very bad on that score and tend, lazily, to leave such things to ‘my lovely’, who, unlike me, is brilliant and never forgets anyone..
As well as the splendid lunch and tea I was showered with presents including, from ‘the children’, another really good, ‘hands free’, telephone with enormous buttons, which makes it easy to use with my useless hands. Kimberley, Smiler’s wife sent me lots of delicious things to eat. Sadly, she could not be with us as she was working, as was my son-in-law, Karl.
Apart from her other presents, ‘my lovely’ gave a bottle of Pol Roger which she insisted on opening for in the evening. I didn’t resist too much! Thus, rounding off a memorable day.
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I spent a very busy day catching up on all the things that had built-up whilst I had been away. I also contacted AbilityNet who have arranged for the tea soaked laptop to be picked up tomorrow and repaired.
The most exciting event today was booking my flights, and those of the good doctor, to Bangkok for mid-October. Michael is adamant that we go whether or not by then I am wheelchair-bound. The resort in Hua Hin is fully prepared for this eventuality so we have decided to go for it. I just pray I do not go to much further downhill in the meantime.h
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Although it is Sunday, and his mother-in-law’s 30th wedding anniversary, my good friend Duncan Rix, came around to sort out my computer for me. Although he managed to get the picture the right way up there is undoubtedly damage to the keyboard so it will have to go back to Toshiba. In the meantime I am reverting to my laptop to maintain this blog. I spent what time I had left today editing all of the corrupted entries made in Sweden.
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After the good doctor had gone to the airport to fly back to Sweden, I spent the morning struggling with my upside down, tea encrusted, laptop. It was all very exhausting and in the end I abandoned the task.
I think this of an appropriate point at which to mention my current physical state at the end of this holiday. I believe my right arm is very slightly weaker as there were occasions when towards the end of a meal I needed to be fed. Legs, again, maybe just a little bit weaker but I’m still managing quite well with the gutter frame. The main difference is in my breathing. Real exertion is starting to leave me slightly breathless. I will know better on this score when I go to Papworth Hospital next month.
Having said that, despite being advised by the doctor following my last visit to Papworth, that I should ask the airline to provide oxygen, the good doctor said, not to bother, nor did I. Apparently, he observed me during the two flights breathing slightly faster than normal but nothing to worry about. Apart from that not much change
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This morning was spent with the good doctor packing for both of us before leaving around midday for the airport. The transition from the farm, the flight and drive home, picked up by Barry, all went without a hitch.
The good doctor only staying overnight, was soon on his way back to Sweden for another five days, with son William, before returning to Australia, via Heathrow, London.. As I said before, a restless soul but one who has been magnificent to me, looking after me like a mother hen without the slightest outward sign of irritation. What an extremely lucky man to have such a splendid friend.
Having said all that, there is no place like home and more important, nowhere I would rather be than with my lovely’.
On the day I arrived in Sweden, I included, on my blog entry, a quotation from George Bernard Shaw which I thought that my readers would find inspirational and in some degree reflected the good doctor’s attitude to life and therefore was appropriate for me to quote. As I continued with the delightful break, only made possible by the unselfish attention given to me by Michael, I cannot resist including yet one more quotation which I found on his desk.
This one from Friar Aengus Finicane, former chief executive of Concern, which I gather is an organisation set up to help impoverished Africans. He wrote
“ Do as much as you can,
As well as you can,
For as long as you can,
For as many as you can”
I think that sums up Michael’s philosophy as well. He helps so many people and I am very fortunate to be included amongst them
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A sad day,. in as much as both families, the Schneider’s and the Irish are leaving today. I have heard about both families for so many years from Michael that it was a great pleasure to spend a week in their company. I know that Irish family were not complete as there were three other brothers who did not come — one of whom, Cathal (Carl) is in Australia but the one brother who did come, Eammon., although quietly, going about his business most of the time, was extremely kind and helpful whenever I needed something fetched or done. Father. Simon was a wag with a dry Irish sense of humour and Nora, his companion, was an absolute poppet. A beauty in body and it looks nature; amongst other things she kindly re-sewed my the electric shaver pouch which I clamp to my right hand, in order to shave gliding down.
The German family turned out to be delightful. Father, Andy, a 45 year old, eminent gynecologist from Coburg, Germany keeping eye on his flock of seven. Delia, whom he married when she was 17 was a lovely 28 year old who manages her five children magnificently. Between them they have done a great job, up to date, in bringing up five children, four of their own and one whom they foster. All of whom have different needs and desires and yet, live and play happily together into one unit. I shall be fascinated to see how the three eldest turnout. The eldest is a boy, 10-year-old Adrian, who delights in wearing his hair at shoulder length to confuse people as to his gender. He is most like my grandson of the same age, Fred. Then we have nine-year Nils, a waggish robust little lad who, as time went on, made great efforts to speak to me in English and did not make a bad shot of it. Nils seemed to me to be very similar in character to my own dear little grandson, Sebastian -coincidentally, they are both mad on drums. Then there was darling seven-year old Anika, most like my own little Lara, a real heart stealer the last of the Schneider’s natural family was to five year old Nora. Very shy and I did not really get to know how very well. Lastly, came the 2 ½.year old foster child, Laura, a little darling, if, understandingly, a little more attention seeking than her adoptive siblings.
She was a dear little thing and quite often took hold of my gutter frame in an attempt to assist me to walk.. If I had a magic carpet, and a genie I could scoop up any number of these children and happily take them home with me.
Apart from being a great mum, and immensely helpful member of this combined household, Delia is a very accomplished pianist and has entertained us, from time to time, on the piano in the main farmhouse. Unfortunately we have not been able to enjoy the full impact of her beautiful playing because it was behind closed doors, 20 yards from the guesthouse. She clearly needs these moments of respite from the arduous task of keeping an eye on five healthy and exuberant children.
It was extremely hard to say goodbye to all my new friends but inevitably it had to be. ( For those on you who hate long goodbyes I thoroughly recommend you go to the video section of this blog and look at the one entitled I Hate Long Goodbyes — It is very amusing) .
Michael drove the Schneider’s to Stockholm, 2 ½. hours drive away, arriving back in the early evening. That day William was charged with looking after me. We had a great day together and Really enjoyed each others company it gave me a great opportunity to get to know William a the little better,. We spent the best part of the day sitting on the veranda in the afternoon sunshine yawning away about life in general, and our families in particular. Towards the middle of the afternoon we enjoyed a visit from Moa, (Gunnersson) yet another doctor, who had been a guest at the party the night before but we had not had the opportunity to have a chat and she was keen to do so. The highlight of her visit was a solo performance of what the Swedish call, Kjula The nearest thing I can liken it to is yodelling in the Swiss Alps. Cupping her hands to her mouth, Moa, projected her voice through a series of different messages across the hills beyond. This is an ancient way of parsing messages on from one person to another and was absolutely fascinating. We would greatly privilege to have Moa performed just for us..
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As we are nearing end of what has been an absolutely fascinating holiday I thought it appropriate to explain just how such a mixed bunch of people came to find themselves in one place in Sweden. It all started with William, Michael’s eldest son, who from a very small boy had always been fascinated by wildlife. At the age of 17 he found himself at a wildlife conference and met a number of people connected with conservation, photography etc. This personable young man approached a number of people there offering to work for nothing if they would take him on. It just happened that a Swede, called Lars Abe, hearing of such offers, advised the young William not to do that but instead suggested that he came back with him to Sweden where he, and his wife Nina, both of whom hadh quite a reputation in wildlife photography, would take him in hand and teach them as much as they knew. How could any young man resist such an offer? He went and took the train to Lindesberg, some 52 km from a little village called Loa. William decided to hitchhike to Loa but no car would stop to pick up a young man in the dark.. He got about 15 km. towards the village when a car pulled up behind him which turned out to be a police car. William explains that he was trying to get to Loa. Fortunately the police spoke English and offered to take him to a pub in a town nearby where he was bound to meet some residents of Loa. Here, William coyly asked the assembled drinkers if there was anyone there from Loa. He was very fortunate in that Astrid, who the readers will remember I mentioned earlier, was there with a friend and offered to take him to the village. The next day he contacted Lars Abe.
That was in 1985 and he has been there, on and off, ever since. A short while later he met, and fell in love with the lovely Lena, who I mentioned yesterday, and as a result Leo was born.
That is the short version as told to me by William but I can do no better than to reproduce the eulogy given by William at Lasse’s funeral. It is a truly wonderful story.
In memory of Lasse
It is seldom one can claim to have had the good fortune of meeting a person that has directly influenced and supported your life in ways that you yourself couldn’t possibly have imagined at the time. I have been doubly blessed because not only has this happened to me, but that person happened to be Lars Åby, known to all simply as, Lasse.
Even with the knowledge that Lasse didn’t have much time left on this earth, his passing came as an incredible shock for me. I simply don’t remember being so sad about anything. An enormous hole has suddenly appeared. And while I can’t fill that hole I would like to share with all of you some of the memories that I have of Lasse.
Jeff and I use to joke about Lasse being the “unofficial lord mayor” of Löa. Of course he was so much more than this. All you had to do was to cast an eye over our little village to see how many people’s lives he has influenced through the years. Indeed, he could have single-handedly opened a local immigration office he was that good at attracting people to Löa. But unlike our immigration offices, integration or making people feel welcome and at home, was his speciality. It is no secret, that if I hadn’t met Lasse I would never have come to Sweden and I probably would not have been a film-maker either!
We first met back in 1985, in Bristol, at a wildlife film symposium. It was the last night of what had been a week long event and I remember that evening scene as if it were yesterday. Indeed, it was like cinema, we had already said our goodbye’s and Lasse had just stepped into the hotel elevator, for he was travelling home early the next day. Standing there in the foyer, with my heart in my mouth, I managed to blurt out “if I work for free, can I come and get some film experience with you?” Lasse calmly turned round and faced me with that wonderful warm smile and that glint in the eye that we all know so well said, “you have my address, if you can find your way to Sweden, you will be very welcome”. The lift doors closed and Lasse was gone!
I remember just standing there in that hotel foyer facing those silver doors and feeling so incredibly happy. What I didn’t realise then, but do now, is that in effect I had just met my “guardian angel!”
Three weeks later I was in Sweden. The train had stopped 50km short of my destination, in Frövi, and didn’t go any further. It was a dark October night and without thinking I decided to hitch-hike!
Optimism, promptly abandoned me at that last street light, and perhaps after 5 kilometres, of what turned out to be a 15 kilometre trek, fear was my only companion. I remember thinking, “Shit! They have wolves and bears in this country!” Of course, no car was mad enough to pick up a man walking along a dark forest road. But in the end, the police did!
I always use to tease Lasse about what a “scrooge” he was with money. I use to feel embarrassed when he would gleefully pocket a receipt for the smallest deduction it might give him. He was definitely from that wise old school of “look after the small amounts and the large amounts will take care of themselves” In reality, I have never met a more generous man than Lasse. I was so generously taken into his home (and Nina’s!) and given so much more than just lessons in film-making.
One very important moment for me happened early on when I had just had the most fantastic day with him. It was late and he said goodnight and as he turned away he added “tack för idag” (thank you for today). I remember being rooted on the spot by this. With all his generosity, why on earth was he thanking me?! This phrase, more than any other, is the one that I have always connected with Lasse.
His patience with me was of legendary proportions. My incessant questioning must have driven him up the walls at times. To make matters worse, I had never seriously taken a picture in my life. So he had to literally begin from the ground up. My first assignment was when he gave me a still camera and two rolls of film and sent me out to photograph an essay on trees. These were then developed and he went through each one discussing their merit. Quite simply, there was no merit, they were awful! But Lasse, patient as ever, would always explain things and then send me out to do it again. In that first period I probably “destroyed” 50 rolls of his film!
In his athletic days we use to drive up to Klacken every other night where he taught me to cross-country ski. Who would have thought he was so ferociously competitive? I remember flailing after him, dripping in sweat and thinking angrily, “how I wished his fat arse would fall over”. We were also secret watchers of crap-television. Late at night when the house was quiet we would sneak into the tv room to watch Dallas, Falcon Crest (and happily I have forgotten the third one). These were always viewed with bread straight out of the oven and dripping with melted butter. His arctic stories would fill books and obviously can’t fit here. But one, and as he describes it “his most stupid moment”, was the time when he exited an outdoor toilet on Svalbard carrying toilet paper in the right hand, 44 magnum in the left, only to be confronted by a polar bear! Lasse threatened the bear with the toilet paper and then, feeling so ridiculous, ran straight past the bewildered animal back into the hut!
My first film experience was editing Lasse’s “Narwhales & Eskimo” film. On that day, when we were to begin, I could hardly contain my excitement. Now I was going to watch film editing! But Lasse always had the ability to surprise you. With a wicked smile he promptly threw me in the deep end by announcing that I was going to edit the film. Excitement quickly turned to dread but Lasse, calm as always, sat down beside me, with coffee and snus to hand, and quietly said “lets begin”. I managed to complete that project solely through his skill in directing me on what to do.
Many years later after I had finished the rough cut of our film “Vision Man” I called Lasse in to see the first version. As the last scene rolled off the table I received the biggest film-making compliment I will ever get. He said nothing. He just sat there and looked at the empty screen with the softest of smiles on his face. He was crying.
School was out.
I suppose trying to write how much Lasse meant to me and my family is from the outset a hopeless task. Most of you know how deeply this goes but when I think about it…well, it’s nearly hard to believe. That we are just one example, amongst many, many people is simply remarkable. But then, Lasse was a most remarkable man!
Outside my kitchen window I have planted a little oak tree in memory of Lasse. I find it completely appropriate because, for me, Lasse was “an oak amongst men”.
I like the idea of it living for a 1000 years but it probably won’t. No matter.
I picture it as this mighty tree in the future long after the memory of Lasse – and all of us – has faded away completely.
But what won’t have faded is that wonderful influence his life has played on countless people that will continue down through future generations in so many different ways.
Of course, they won’t even be aware of it – but we were!
Now that’s what I call a “guardian angel”.
Tack för idag!
William Long
Tonight, the last day of the Irish and the German family’s holiday, it was decided to give a party..
A number of phone calls were made casually inviting William and Michael’s many friends to drop in, which many of them did, some with their instruments, mainly guitars.
The party turned out to be a wonderful affair. A bonfire was built in the drive with a small barbecue but despite the heavy rain from time to time we all managed to feed really well. The promised musical concert was somewhat dissipated by the weather. Delia gave us a short piano recital which we had to listen to from the adjacent guesthouse.. This was followed by some Swedish ballads, lustily played and sung, by Lars and Philip (Wiesslegren). We then had a beautiful Scottish ballad from Lasse (Larsson) -the local vet - interspersed with beautiful songs from Leonard -the retired schoolteacher – playing his guitar and occasionally accompanied by Lillimor, who has a fine powerful voice. The three eldest Schneider children stayed up late and joyfully joined in the singing and waving, entirely impromptu.
Obviously. I cannot possibly mention every guest by name, apart from the fact I probably couldn’t remember who they all were. However, I must just mention that I had the great pleasure and privilege of meeting the famous Swedish Treasure, Nina Hedenieus, the internationally renowned filmmaker who was responsible,together with her equally famous popular partner, Lars Abe, who sadly died recently, for bringing with William to Lo. This was the crowning glory to what was, for me, a very memorable night. Incidentally, I understand that the title Swedish Treasure is one confirmed, very rarely, on persons who have made a very special contribution to Swedish society and, I gather, carries with it modest stipend. That shows you how very important Nina is considered to be
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Another, a quiet day, just me and Michael at home. He working on his extraordinary complex travel arrangements and some outstanding legal medical reports and me battling with the crippled laptop. I tried every trick in the book and by dint of perseverance managed to recover a substantial element of the laptops performance. I even cleverly managed to find an earlier version of Dragon which I trained from scratch and managed these last few days of the holiday. The point being that contemporaneous reports are far more reliable and, indeed interesting, than recollection. This was a lesson I learned when sitting as an arbitrator.
I had an even more pressing reason today and that was because Michael had given me some water tablets to try to help with my swollen legs. Unfortunately the effect of this was to make me go to the loo almost hourly for most of the morning.
Unfortunately this day had a rather sad end. The Schneider is had received a telephone call from Andy’s mother informing them that their much loved little dog had died. The family was devastated. When they arrived home they went straight up to their rooms, without eating, from whence heartrending sobbing were heard for some time. They all knew that the dog was terribly ill but had hoped that he would have survived until their return. Clearly this little terrier was an important part of all of their lives and his loss will be sorely felt for some time. I know only too well how they feel. When I loss my own black Labrador, Woody, it took me about six months before I could accept that I would never see him again.
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Today was the first really miserable weather that we have had since we arrived. It is not for the fir tee fringed lake in front of the farmhouse you could believes that you were in Ireland, or so the Irish family agreed.
However it did not deter either family from setting out for the various expeditions. The Irish to Stockholm to some museums and the Schneider’s to some play area nearby so the children could expend some of their seemingly limitless energy.
I had little to do during the day so, at one stage, looked at a video entitled Lost in Translation, slightly sad but delightful story which I would recommend to any reader. However, the point of referring to it was because of a comment made at the supper table. I was talking to William when we heard half a dozen people, on the other side of the table erupting in the laughter.. Curious to know why, we were surprised that they were rather coy about explaining the joke but, having decided that it would not offend me, told us that Delia had suggested to Michael that he would miss me when I had gone.. Michael, completely misunderstanding the context of the comment, laughed and said , “who knows I might go first.” . “No, no”, said the horrified Delia, “I meant when he goes back to London”. Certainly lost in translation between Swedish and Australian.!
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Another day dawned and with a prearrangement made the night before, the good doctor and Andy rose at 5 a.m to go kayaking on the lake and were lucky enough to share the experience with a beaver who, it appears was totally unperturbed by this strange yellow beast elsewhere on the late. After the thrill of the dawn experience, the adventurous kayakers returned to their beds. The Irish, on the other hand, at least Simon and Nora, emulating Uno’s Caroline, took an early-morning plunge in the icy lake with, I suspect, more on their Uno’s lover!
Later that morning, Michael, who had been in town to refuel the car, returned exultant having achieved what most of us take for granted in our own backyard.. However, in Sweden it is all done with credit cards at the pump with the instructions written in Swedish Somehow, Michael got through this arduous process without too long a queue of cars behind hooting impatiently and as a result returned here triumphant,
Today, the morning was spent by the Irish family collecting a huge bowl of raspberries from William’s garden in his main house (Kallhagen) and the German family messed about in boats on the lake.
I spent the morning doing my blog and catching up on e-mails etc. In the afternoon we went off to look at the little house owned by William (Akroken) which Michael is hoping to purchase. He had some ideas about extending it and it needed to look in situ, so to speak.
In the late afternoon our numbers swelled to 18. William came with his son Leo, 13, and Leo’s mother, Lena; by Kent, our nearest farmer neighbour and by Timi, a Finnish naval captain who was convalescing from a rather nasty operation. All seven nationalities sat down to a splendid meal, in the garden, rustled up from odds and ends but nevertheless very palatable.
Unfortunately, I had an accident with my laptop and managed to knock a cup of tea over the keyboard. As a result for a while the whole thing would not work at all. In desperation Michael cooked it in the oven, at a fairly low temperature, and this seemed to a have salutary effect on most of the functions except that one corner of the keyboard still refused to work and went into a noisy complaint whenever I pressed any of those particular keys. The biggest loss was my Dragon voice recognition. It kept telling me that what I was trying to access was incompatible or invalid, which of course is complete nonsense but nevertheless it meant that I would not be able to continue writing this blog whilst in Sweden, certainly not using that particular version
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I wake up with an air of anticipation this morning Michael had managed, last evening to acquire the last five tickets for La Boheme, for this late afternoon performance. I have fond memories of this particular opera. Almost 60 years ago, I found myself playing one of the urchins in Act 2, at Sadler’s Wells, , when it was substituted for a performance of The Pearl Fishers which had to be cancelled, at the last minute, due to the indisposition of the tenor. Of course, my colleague and I were far too big to be to playing street urchins but, at such short notice, the director had no option. So two 6 foot high youths, in short pants and ragged shirts, were sent skipping onto the stage holding hands in the street scene. (See Treading the Boards at Sadler’s Wells, in the Anecdote section of the blog)
A quiet morning with all the families dispersed in different directions. Even Michael left for another measuring expedition with Leonard. Poor young Eammon, with his nose buried, as usual, in a book, was been left to guard over me, in case of emergencies.
We left around 3.00 to pick up Astrid’s mother’s wheelchair, which had been kindly loaned to us for use at the Theatre as it was thought it would be more convenient than my gutter frame. So it proved. It was the right decision. Not only was the access reasonable for the wheelchair but I was given a position in the front row and therefore had a wonderful view of the stage. The theatre itself is an enormous high wooden barn that had previously been used as a sawmill. It has a capacity of 800 and was completely filled. As I mentioned previously, its acoustics have the reputation of being the best in Sweden and having heard this opera I can believe that this might be true. They have achieved this by a number of cleverly placed acoustic baffle boards, under roof level, using a similar technique to that which they used to resolve, a similar problem in the Albert Hall in England, which,when completed, proved to have very poor acoustics. A magnificent architectural feat, in memory of Queen Victoria’s beloved Albert, but a poor music hall. Here they solved the problem by the use a great number of large upside down mushroom shaped baffles which were lowered or raised, to varying levels, to achieve pretty good reception in all parts of the hall.
Incidentally, I got it wrong about the cast, they are all professionals who take the opera to other parts of the country and also give concerts etc, here and there, in order to make ends meet. Most of the orchestra were very young and play perfectly adequately . I thought the Rudolfo and Mimi were both superb although Delia, whose businesses is music, rated Mimi the best for various technical reasons. I loved the whole experience, Quite apart from the performance itself, was the location of the theatre, situated as it as in such a beautiful lakeside setting. the like of which you are unlikely to see anywhere else in the world. The enclosed cosiness of this large theatre combined with the soothing music often has a soporific effect causing me to nod off, momentarily, from time to time, however I’m glad to say, I did not disgrace my host in this manner. However, my own little weakness prompts me to recount a tale recounted to me by Nora. Apparently, she took a gentleman friend Robert to see this same opera in Cork opera house,, some years ago.
This friend was clearly not one jot interested in what was going on on, stage as he spent the the first half of the performance fiddling with his iPhone, texting or whatever, hidden from Nora, by his side. to Nora’s great annoyance and embarrassment in case. the people behind were distracted by the brightness of the light from the iPhone. Fortunately this young man ran out of people to communicate with and by the time the second half began had fallen asleep, only waking to the thunderous applause as the curtain fell. He turned to Nora and asked “what happened”. Nora smiled sweetly, and replied “Mimi died”. Needless to say. Nora never made the mistake of inviting Robert to an opera again!.
As it was we had been fortunate enough to purchase the last five tickets for this performance. And so it was that five foreigners, one Irish one German, one Danish, one Australian and one British, travelling in a French car, set off leaving Simon and Andy with strict instruction to prepare a bumper feast for our return,. The girls did not display a great deal of confidence in the outcome suspecting, we might return and find these two would-be gourmet chefs comfortably ensconced in the chairs in the garden having consumed the best part of a bottle of whisky and waving vaguely towards the kitchen, mumbling something vague about supper being ready very shortly. Not a bit of it. We were greeted with the sight of a long table, in the garden, well out laid with the accoutrements necessary for a good meal – is my memory deceiving me but did I also see a small bunch of wild flowers on the table? . We were not disappointed. The boys had done us proud. Fortunately, Ruth had joined us for the theatre run and stayed for supper otherwise we would have been 13 around the table which would not have suited the superstitious.
The meal over, I was allowed my cigar and we spent the rest of the evening chatting and sipping some excellent whisky before being driven indoors by the evening chill and the beasties which were beginning to bite and irritate ..
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