Captain Beefheart - Flavor Bud Living

"pappy with the khaki sweatband, bowed goat potbellied barnyard that only he noticed, the old fart was smart...the old gold cloth madonna dancing to the fiddle and saw, ...he ran down behind the knoll 'n slipped on his wooden fishhead...." (opening of "old fart at play" from Captain Beefheart's "trout mask replica").

The strapline to the Big Swifty blog is "a flavour of budd living", an appropriate pun on Captain Beefheart's composition "flavor bud living", my little joke probably going over the "sam with the showing scalp flat top" heads of most of my readers.

Don Van Vliet (the Captain's "real" name) died yesterday, leaving a legacy of about twenty albums of quirky music and entertaining wordplay, and a stack of paintings for his other career as a painter. It always amused Don that his writings were taken by some as zen wisdom. In my head I can hear Don reciting/singing, and also my pal Rod who could cover it very well. Indeed, Rod read Don's "Orange Claw Hammer" at our wedding reception, in his best Beefheart snarly drawl.

"thirty years away can make a seaman's eyes, uh round house man's eyes, flow out water, salt water" Well over thirty years of listening pleasure, and our own special celebration seven years ago.

A year in eleven (shortish) paragraphs

That's us. Christmas 2009 in Brittany, just the three of us. And here's our contribution to the wretched world of the round-robin annual newsletter; yes it's the Prettygate Postings for Christmas 2010. Read and cringe. (Why is it a round-robin? It's insulting to Robins.)

"We’re just back from our summer holiday – a few days in Birmingham at the end of November. We never were the “sun and sand” types, so it was perfect. We travelled by bargain-ticket train, and hired an apartment in central Birmingham’s Chinatown. A highlight of the trip was the Frankfurt Christmas market in Birmingham (yes, really!) which set us in the mood for Christmas at home this year. Frank’s best bit was catching the tram to Wolverhampton, the little wanderer.

We apologise for spoiling your 2010 by not producing a Prettygate Postings for Christmas 2009, but we were not in Prettygate last Christmas. We decamped from Colchester to Brittany for a long December break, getting back in the last week of December. We stayed near Quimper, and enjoyed a quiet holiday, away from the over-the-top commercialisation of Christmas in the UK. Bah, humbug.

2010 has been a bit of a stay-at-home year, as we had neglected the house a bit from 2008, when we first had to concentrate our efforts on doing our best to manage Frank’s diabetes. The house now has nearly all the windows replaced, and we have extended the patio and roofed it with a sun-shaded pergola - imagine a cross between Tuscany and Accrington. And the garden has been cleared in readiness of our moves towards hard-core radical homemaking and backyard homesteading – insert your own “The Good Life” joke here. We had a bumper crop from our one vine vineyard with about ninety bunches of grapes, and the best ever quince yield, and collection of wild apples.

Frank’s learning is going well, with his natural inquisitiveness. We had been looking at the possibility of home schooling, even before Frank’s diabetes diagnosis, and he would have started at the local school in January 2011 if we had chosen that route. We decided on balance to go for home schooling, so we can enjoy that together, and also better manage his diabetes. Frank’s circumstances are very much out of the ordinary, and a young child with diabetes is in a vulnerable position at school. If he went to school he would have a lower level of skilled observation and care for his condition, and we would still need to be on standby, and have the task of visiting him at school at lunchtime to test and inject.

Besides, our Big Swifty homeschool is a great option. We belong to national and local networks, and there are lots of activities out there. For those that are interested, we are following Un-Schooling principles, as set out by John Holt. Our education projects are sometimes mentioned in our blogs.

Much of our capacity is taken up with our family life, with Frank needing a lot of care 24/7, but it is very rewarding to be making a good job of it. For those that don’t know, there are only guidelines on how to manage diabetes; even with good management and control there is a large random element there to trip you up. We are both involved in all the work, and it makes it much better for us all to have second opinions on the judgements we make, about food and insulin timings and dosages. There is much more about what it really means to manage a child with type 1 diabetes on our blogs, especially at Muffin Moon. Next year we hope Frank gets an insulin pump, which he will always wear, and we will plumb into his body every other day – and we will still have to continue with the 4-5 blood tests a day. It should mean less injections and better care, but it ain’t a patch on a healthy pancreas.

Our work is going well, with our main income from Andrew’s work for the Travel Plan Club, linked with Colchester2020, a local organisation that survived the government’s bonfire of the quangos. Other jobs include working for Colchester Borough Council pounding the beat for the Elections Service, and his latest creation, the poetry stand-up “Fred Slattern, Colchester’s Slum Poet”. Jules is full-time mama, wife, homemaker and inspiration. Our voluntary/ self-employed work includes setting up and running a local support group for parents of children with Type 1 Diabetes “Colchester Circle-D”. Jules runs a Knit and Natter group, and has been very busy crafting under her Muffin Moon brand. We did our bit for Colchester Free Festival in September, specifically for the Kidstival and at a Busk Stop. Big Swifty Associates were also involved in walking promotion as part of “Walk Colchester” http://www.colchesterwalktowork.blogspot.com/ took off in 2010/11.

We’ve been to a fair few arts events, but in the evenings it’s always only one of us, as we don’t have a trained babysitter to enable us to go out as a couple - maybe when Frank’s older! On the other hand, we have a lot of daytime together as a family, with visits to local sea and countryside, and maybe the odd café/ fish and chip shop.

Andrew had a few days in Scotland in mid-May, backpacking from Glenelg to Invergarry, with Rod Ross and Alan Hardy. At the end of May we went camping in Yorkshire at the Gaia Tribe http://www.thegaiatribe.co.uk/ which was loads of fun and lovely food, but rather cold and windy for us southern softies. Henley-on-Thames is more our scene; balmy days by the river with Severine. We tried a bit of house sitting at a friend’s house in Norwich, but got rained off during a non-stop raining September. Turnips underwater, in the Norfolk paddy-fields.

We have enjoyed the build-up to this Christmas, after a year away from it all last December. We have had a Martinmas party round our house for the local nightshelter, and next week will be hosting a solstice event for the immediate family. We have Severine and her friend Louise staying with us over Christmas week, so we will have to pretend to be ultra-English. Then we also have the older family visiting for Christmas Day. We are looking forward to a peaceful time, and a quiet night in on New Year’s Eve – our life is exciting and dramatic enough, 365, thank you.

And next year? Frank’s having music lessons, Andrew’s making cheese, and Jules is opening an Etsy shop. With love to all our family and friends for 2011, from Andrew, Jules and Frank.

http://www.muffinmoon.blogspot.com/ http://www.andrewbudd.blogspot.com/ http://www.bigswiftycompany.blogspot.com/
at Facebook “andrew stanley budd” “julie budd” “andrew budd” “fred slattern” “colchester circle d”

To love, and be loved. Difficult enough to be there for many of us. Put Gay and Disabled into the mix and it's even trickier. But the yearning is, of course, still there.

I've seen plenty of plays, films (yes Moulin Rouge), books and poems on the theme of searching for love, but none had prepared me for the show at Colchester Arts Centre last night. I should have known it would be something out of the usual, when the flyer said "FAT is the journey of a gay, disabled man in search of his heart's desire. Pete Edwards uses distinctive movement, projected imagery, and spoken text to create a surreal narrative along the banks of the River Thames. Follow his quest to find the fat man, eat some spaghetti and live happily ever after."

The scene is set with an empty performance space, a screen at the back with video images, and a sign language interpreter stage left. The lights go down, there's a pause, and from the shadows appears Pete Edwards, a bald man of about 50, wearing only some very shiny, very short shorts, and a pair of Converse. (I immediately thought of my friend Severine, who wears those shoes.) Oh, and Edwards is in a wheelchair, and he's shuffling himself along, his limbs writhing.

So, what's coming up next I wonder? Will it be some in-your-face diatribe about how he can't use the Tube or get on a bus, because of the step? Oh no, it wasn't disabled specific. It was about isolation, and dreaming, and desire. Themes that touch us all.

As Edwards spoke, his script appeared as sur-text on the screen, above the images of the Thames. The programme explains that Edwards is a drama "workshop facilitator ... for people with differing speech". For the audience the sur-text was essential, as strangers to Edwards' speech could only pick up the odd word. (The sign language person seemed a little superfluous, but maybe I missed the point?)

The play unfolds, as we meet the fat man (only on screen), and they go back to his flat, for spaghetti bolognese and "afters". Now Edwards is completely naked, as we read quotes on screen, from Shakespeare, that are specially relevant to the play character's predicament. Rich fare indeed.

Now I may consider myself a right-on guy, with interest and some personal experience of disability, caring and access issues, and as a follower of gay culture (indeed, some of my friends are heterosexual and able-bodied), but there was much to learn about the HUMAN experience from Edwards' play. A remarkable show.

And for me the most moving images were Pete in front of a projection of a dance club scene, Pete's writhing linked perfectly with the mass of dancing bodies on the dancefloor. Just for a moment we can escape from ourselves.

great beard, shame about the poems

Fred Slattern, possibly the second best poet in Colchester? There were forty entrants to the Poetry Slam, but only nine jumped the twin hurdles of snow and stage fright. Five got through to final round and just one won, with no other placings given. Fred was in the final.................. but didn't win.

Fred put on a good show, at the Arts Centre's Poetry Slam, finding the microphone rather empowering. Certainly compared with his usual spoken rants at nobody in particular, reading his shopping list or grumbling about bus-drivers, from his imaginary pulpit on street corners. And he had a crowd of fifty, rather then the usual none.

In the first round he covered the snappily titled "If James Dean had lived, would he have shopped in Waitrose?" followed by the mercifully short political piece "Council House and Van", and ending with "When?" - his take on the contemporary First Site gallery, and the storm over the cost and delays when the Town Hall was completed in 1902.

The judges, David J and Martin Newell, ooooooh, proper poets, were sufficiently impressed to give Fred another (metaphorical) soap box for Fred's little stories from the "I saw this, and I heard that" school of poetry. In the final round Fred covered his "Electricity" - linking country parks, local Elizabethan celebs and a big secondary school. Then it was "Colchester High Street", speaking in support of the grand old dame that the doom-mongers say is on its last legs. The final piece was "sandwich deal" commenting on our attitudes to Big Issue sellers.

Fred probably got more (intentional) laughs than any of the other entrants to the Poetry Slam, with his bumbling introductions and terrible poetry puns. His last ditch attempt to charm the audience and judges was to promise them his "Hilly Fields" poem as the winner's encore, but sadly it was not to be. All the competitors were beaten by Steve Lawton, who pulled off an astonishing hip-hop dj rap performance, a very worthy winner.

But Fred had the last laugh, with a group of punters in the audience approaching Fred after the show, asking to hear "Hilly Fields". Ever the showbiz star, and ignoring the standard advice to leave them wanting more, Fred addressed the back rows with his Hilly Fields yarn, to more applause! Fred's sitting in his lonely garret now, waiting for the bookings to come in....

And you know how good your poems really are, when people come up to you and say "I love your beard".

Public humiliation on TV and live in person?

We're just back from our summer holidays. No, it hasn't been a long break, we have been busy at home this summer. We have had a few November days in Birmingham - we don't care for hot beach holidays anyway. Travelling by train and renting an apartment in the city centre, we enjoyed relaxing evenings in, looking after little Frank. The website promised lots of Sky entertainment, but the reality was that TV choice was rather limited, so we watched "I'm a celebrity, get me out of here".

I'm such a pompous snob that I have never bothered to watch this show before, but my common-as-muck friends love it. Plus everybody's heard about it through all the unavoidable news headlines. And I've got to admit I'm hooked, and am watching it now. It's quite troubling to see people voluntarily submit themselves to public humiliation, and I'm not comfortable with the way insects and reptiles are mistreated so that we can be served up with squeamish entertainment. But Ant and Dec provide some quality links. And I want Stacey to win!

Talking about public humiliation I have offered myself up for some. I am appearing as my creation "Fred Slattern - Colchester's Slum Poet" with extracts from Fred's latest collection "Fanfare for the Common Van".

It will be at "The Poetry Slam" at Colchester Arts Centre on 2 December. As audience reaction helps decide the winner, I'm hoping Fred's people will turn out for him. Or will it be the current day equivalent of bear-baiting, with the audience wanting to rip me to shreds? Give me no sympathy; I am, after all, a voluntary patient.

A calculated look at "dead in bed syndrome".

Ask the parent of a diabetic child about what is their greatest fear, they may well spout the charmingly named "dead in bed syndrome", which is exactly what it says on the tin. There was a death from this in the USA recently, triggering lots from the D-community to display remembrance candles. Of course, I have the utmost sympathy for the family of this child, but I found some of the D-community's response, (dare I say it?) a little mawkish.

Lots of D-parents, and let's be frank, it's mainly D-moms rather than dads, that blog or use facebook, were describing how they live in fear of DIB syndrome, how they watch their kids overnight, and are unable to sleep themselves. Maybe I'm a (part of the way along the autistic spectrum) cold fish, but I like to play the odds game, when assessing any situation, and determining my reaction on how to handle it. Maybe what I say will give some people some reassurance, others may just consider me analytical and heartless.

Looking at http://www.childrenwithdiabetes.com/ (and taking what they say at face value - maybe a big assumption?) it says that for every 10,000 patient years, between 2 and 6 people die from DIB syndrome. Taking the average figure of 4 deaths, that is of course 4 too many. But it means that one dies for every 2,500 patient years. (That could be expressed as "out of a sample of 2,500 people with diabetes, one of them will die from this syndrome per year".) Very unlikely for any single individual, but nevertheless distinctly possible.

So how does this compare with our risk from lots of other diseases and dangers? In the UK about 2,500 of us a year, get up in the morning, bright eyed and bushy tailed, and don't ever return home, as we get killed in car crashes. What about meningitis? Here today, but maybe gone the day after tomorrow. Heart failure and instant death from undetected problems may be out there stalking us. And there's hundreds of other diseases to fear, where maybe we have a day, a week, a month, or a year to live?

How do any of us (not just D-people) sleep at night knowing our loved ones could be taken from us at any time? The answer of course is that most of us just get on with life, and don't think too much about that aspect. But with chronic conditions like diabetes we are constantly reminded of our mortality by the nature of the condition, and the complex management that it needs.

So let us look at the risk that our beloved will die this evening from DIB syndrome. Starting from that 1 in 2,500 chance of it happening in a year, the odds for tonight are 1 in 912,000. A risk I could do without, but is it one we should habitually lose sleep over? I'm so tired I think I'll sleep tight, even though it's my turn tonight and I'll be up for the nightime duties with our little boy.

I hope Frank's picture above isn't too scary, and that this blog has given at least some of my readers some solace over something we would rather not have to think about. Best wishes to us all. And deepest sympathies to anyone who loses someone tonight.

The Cure is a tempting mistress, but we're not waiting around for you.

When running a marathon, or backpacking, you don't set off with a sprint. You find a pace you can sustain for the length of the event. And when the event lasts sixteen years, a calm steady approach looks best to me. With Frank's diabetes, we're now over two years in, with fourteen to go until it's his responsibility at the age of eighteen. Frank's condition has taught us much about diabetes, and much more about ourselves and our wider community.

Our National Health Service has come up trumps as far as we are concerned, and the Benefits system means that we can tick over without having to sell-up to fund the time we need to put in, to look after Frank especially during his younger years. So thanks to the UK taxpayers for helping us - and I'm one of them too!

So how do we deal with the condition, and how do we feel about a cure? I've covered managing diabetes in other blogs, so I won't go over the old ground of finger prick testing, multiple daily injections, observations every ten minutes during the day, and procedures during the night. We just have to get on with it all, we have no choice.

And "The Cure"? Well we're not holding our breath or counting down the days. Even before we had personal involvement with diabetes, we knew that a cure was many years away, so when we had the diagnosis, this lack of a fix on the horizon didn't come as a surprise to us.

We can't wait for a cure, in two senses. A cure would alter Frank's and our family's life, enabling us to jetison all the mental, physical and emotional effort in managing the disease, and avoiding all the personal discomfort for the boy with the fingertips of steel and the pin-cushion bottom. And we can't wait for a cure, as we've got to live our lives in the here and now; not some fantasy dream life at some unspecified time in the future.

The day-to-day management of Type 1 Diabetes takes all our capacity, and we don't think very much about The Cure. Sure, we support the efforts of the JDRF (Juvenile Diabetes Research Fund, an international organisation), and Diabetes UK who give lots of support. But we can't put our lives on hold until a miracle cure eventually turns up.

Frank's just an ordinary little kid, in almost every way. Apart from the time he's having medical attention, he's just charging about as four-year olds should. The picture shows him zooming off into the distance, on his scooter bike on the Wivenhoe Trail with his cousin.

We have benefited massively from the diabetes community. Thanks to the internet we have access to all the information we could ever want. But, even better, we have made contact with scores of people in similar positions, sharing experiences, looking at how best we can look after ourselves, and live a regular life. We have played our small part by forming Colchester Circle D, to support local families with Type 1 Diabetes.

There are super blogs out there (including "click of the light", "muffin moon", "instructions not included", "shoot up, or put up"), with lots of practical information, emotion and humour. I love these blogs, some written by people who have had diabetes many years. The way they pace their lives, and their approach to "bad days" are an inspiration. (For the information of non diabetics - even the most careful experienced diabetics have bad days - the condition certainly does not obey the rules that we follow when we do our best to manage the beast.) And little is said about a cure. They're all busy just getting on with their lives.

The Cure is a tempting mistress, and some type 1 diabetics are in hot pursuit. They expend lots of their energy pushing for extra funding, and posting on the internet to raise awareness of diabetes. Maybe it's our make-up, but we simply don't have the stomach for such a fight. Our energies are so focussed on getting by, that we simply don't have the capacity to be angry about the condition, or to lobby for its place in the public's and the authorities' perception of the ranking of Type 1 diabetes, compared with dozens of other rubbishy diseases.

It's Diabetes Awareness Month, and this blog is part of my contribution to this. So, if you were expecting me to beg you to donate to JDRF, or to rail on about our terrible lives, I'm sorry to disappoint. Actually, we enjoy a very good life and we're doing our best to get the most out of every day, inspired by our own brave little hero who just lives for the moment. The Cure may be a tempting mistress, but I don't think she's coming our way any time soon. But it would be nice, and hand over your money.....