Bodies

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I have been thinking of dead bodies. There is something strange about this given lots of big – and good – things are going on at work, but the optician says that I might have high blood pressure.  I swim miles, walk often, eat well, am not overweight and have never had high blood pressure in my life.  It might be just that I have wiggly eye veins, apparently. Some people do.  But I am willing to concede that work has been stressful, unrelenting and I have had one too many pints of Ale lately.  I am British – Ale drinking is part of my heritage and culture that stems from not having clean water in days gone by but perhaps I’ll drink fewer pints?  I checked on drinkaware and it would seem that in fact I am not drinking over the recommended number of units in the week most weeks but still: perhaps I need to change my behaviour now that I am the wrong side – the right side in my view – of 50.  So I will concede that I have had to take a look at my own mortality.  The fact is we don’t have a dead body now,  but we will have one soon.  We may never see  one, or we may see many according to our work, religious beliefs or opportunity/misfortune  Either way: we will be one as sure as eggs is eggs.

When I was working in Buxton in the early 90s a couple of things happened that really made me wonder if the world was out to get me.  This neurosis did not last long but it did remind me how life can conspire with you or against you.  I’d been promised a rise in salary on the basis of demonstrating that I could do the job.  I did the job well but the man who made this promise had to retire because his wife died suddenly and the devastation meant he could no longer work.

I was considering this, and what I should do about it, whilst finally passing my driving test on the 7th attempt: I am resilient, I am a Weeble: I wobble BUT I do not fall down.  A colleague lent me her car to get to one of the other sites that we worked on.  Her dog, a border collie, was in the back.  I went to a meeting, and when I came back to the car it was on fire.  Flames engulfed it on all sides.  I ran towards it and the crowds that had gathered pulled me back.  The dog would already be dead they said. I would be too if I went too close.  By this stage the flames kicked our ten feet or more.  Was it my fault?  Apparently not: it was a fault in the wiring of this vehicle and oftentimes this happened.  Ironically the car was a Fuego.  I came to work the next day and faced my colleague.  She was incredibly forgiving and did not blame me.  I  blamed myself though but carried on never taking any time off or given myself time to think or reflect.

A week later a group of children that I was working with were playing in a wooded area just near the school and found a dead body.  He had been a local homeless guy but for some inexplicable reason he had chosen to take his trousers off before lying down in a copse in winter and so these kids not only saw a dead body but a semi-naked dead body of a late middle aged man.  They were interviewed by the police and though somewhat shocked and shaken up, they were, like me, not permanently damaged by their experience.

How had the universe delivered these three punches in a matter of weeks?  Because the universe does this every week this kind of thing: cars catch fire, accidents happen, wives and husbands die and homeless people do not survive the streets and very occasionally you stand in the middle of that maelstrom and for a second or perhaps longer you think, “This is my fault.  This is happening because of me!” because it seems to be about you until you realise that you are nowhere near that powerful or important and that life just is and just goes on.  A year later I left and the position I vacated was advertised two grades higher.  I took some pleasure in that but not much.

-o0o-

We got the call to go to JayJay’s house.  We arrived and she had just died.  According to her wishes she was lying on her back on the floor of her bedroom in her small flat and her friends were gathered to say goodbye.   She was dressed in red, and she looked as though she was asleep. I was there fraudulently with my partner but I too was invited in. We sat around and spoke of her, and then retreated into silence.  JayJay had died of cancer and although she seemed old to me at the time, she was a similar age to the one I am now.  The room was in semi-darkness and not able to stare at her body for long (not knowing her really and yet been part of this intimate group did not sit easy with me), I looked around her room.  She was a very neat person and her jumpers and clothes were all ordered by colour and neatly folded: bold colours predominantly primary in nature.

The gathered friends were a collection of dynamic folk, radicals who meant to change the world: individuals who used Ecover before it was fashionable to do so, people who wanted equality for all groups and who were willing to take to the streets to get it, activist of different kinds.  I am not a flag-waver.  I felt like I was there on false pretences.  I was just a young kid who wanted to change the world person by person. Nonetheless, I felt privileged to spend time with JayJay minutes after she’d left this mortal plane.

-o0o-

I was working on a housing estate at the top of Ripponden Road in Oldham.  The wind whipped round and I wouldn’t be at all surprised if they shoved people up there so that they could be out of sight and out of mind.  It was several degrees colder than the centre of town and it was unforgiving when it rained or blew as it seemed to most days.  It was bleak.  I forget the project: I believe it was a summer scheme of some description but I’d managed with the key workers to gather a bundle of relatively young lads who we considered the right age and cohort to benefit from the work that we were doing.

So, we worked super hard to really capture their imagination in a drama project.  Foolishly I said to these kids what would motivate them?  A cup, they said. Where in God’s name was I going to get a cup from in Oldham on a Thursday with the showback of their work a few days away? I was just puzzling over this as I was getting in the car when a couple of the bigger lads came up to me.

“Eh are you really getting us a cup?” one asked.

“I am,” I said.

“That’s good.”

I smiled.

“What kind of cup is it?”

There was a pause.

“You’ll have to wait and see,” I said.

We were standing companionably together in the car park with houses looming over us. The younger of the two boys looked up at them.

“Did’y hear about what happened in there?” he said.

I hadn’t.

“A friend of ours broke in: probably for some fags or something. Can you see how the bathroom window is broke?  He did that.”

I nodded and that was enough of a sign for him to continue.

“He climbed in through the window and instead falling into the bath he found he was standing on an old duvet.”

He’d got me now, and he knew it.

“He thought, that’s weird. Because it wasn’t like the duvet was just on it’s own.  It was darkish in the bathroom but he realised that the duvet was solid.  So he pulled it up.  Under that was an eiderdown.  He thought, you know, maybe there’s some treasure in here, something worth hiding.  So he pulled up the eiderdown and then there were some old towels so he pulled them up too.  Under that was a sheet.”

I raised my eyebrows partly in anticipation… “And….”

He kept quiet.  Looked up.  “There was a mummified woman.”

“No way!” I said

“Yes way, miss!” He laughed.  “He hadn’t killed her or anything but the fella who lived there was a bit of piss-head so when his missus died he just shoved her in the bath and covered her over and then he just sort of forgot about her.  Can you believe it?”

“What that he forgot about her?”

“Well all of it really, miss… it’s all a tale innit?  No one’s talking about anything else round here at the minute.”

I looked up.  And I knew because of the kind of lad he was that he wasn’t pulling my leg.  I wondered what it was like to grow up in a place where people forget about the dead wife they’ve stored in a bath.

“Bet your mate got out of there pretty quick,” I said.

“Practically shat himself,” he said, matter of factly.

The next day, he and his mates did their performance and – having wracked my brain – I awarded the story-telling young man a Nike Cap (it was the best I could manage at short notice – not a cup but a cap!)  He loved it! Never took it off his head. I’d see him round town wearing it.

A few years later I went up past that housing estate and they’d knocked it down and sold the land to a developer who built private and expensive properties that he advertised as having ‘views of hills and moorsides.’  And people bought them too.  But when I drove past, all I thought about was that dead woman in the bath, and the lad with the Nike cap who told me the tale.

-o0o-

Never fear I’ll get my blood tested this week.

 

 

 

 

 

 

 

Sole Survivor

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“225,000 will develop dementia this year, that’s one every three minutes.” Alzheimer’s society, UK.

When I was a freelancer, I got to deliver many projects of many different kinds.  One such was working on J2 ward.  My memory tells me this project came through the early days of LIME but this may be a fake memory.  It was a long time ago and I can’t find it on their website.  In any case, along with a film maker I was commissioned to make a documentary/tell the story of the patients on the ward.   I believe there was some kind of publication too.

J2 ward was in Bolton Hospital and it split into two sections – men who were in the early stages of dementia on the one hand, and on the other those whose disease had progressed more significantly.   I had done a lot of work by that stage with older people so the chats with those who were at the forgetful stage were largely anecdotal chats and reminiscence.  I haven’t met a person yet who doesn’t have an interesting story to tell (although some people don’t believe this of themselves.  Even ordinary lives are unique, even ordinary lives are nuanced, experience love and pain, gain and loss, ups and downs: that is how life works.  And if you tell stories back sometimes people say, “that sounds good” – as if you’re telling them someone else’s life instead of their own.)

Karen, the ward sister, was a very energetic, passionate woman who wanted to change the public perception of this most crippling of diseases.  After the first meeting, Karen gave considerable thought to what was possible.  In the meantime, I tried to find a film maker.   Often – in those days anyway – these things went like this: I knew someone who knew someone and they were recruited.  In this case, I knew someone – the poet Liz Kirby – who told me about her sister, Jane Kirby and how she had recently started to work as a film maker.  I met Jane, and we got on straight away.

Jane had also recently been diagnosed with breast cancer.  For some reason, and I was never really close to Jane so couldn’t give her thought processes, she made three decisions about this that were very costly.  Firstly, she had ignored a lump for much longer than made good sense, secondly when she did finally go into the hospital system she had such an horrific experience with a consultant she did not go back or follow his advice for months and months, and thirdly, she took the view that there must be a natural cure out there that was kinder than what was on offer to her.

The first meeting with the hospital was really full of energy and fun though, and both Jane and I were really excited about the practical possibilities of the project.  Karen had a list of patients that she felt could really tell the story of who these men were as well as who they’d been, and she was pretty certain that all the wives of these patients would be willing to talk to us too.

So, in our film, Great Lives we explored the lives of four men closely, all in the later stages of their dementia.  These were the Territorial Army Captain, the Footballer, the Fisherman and the Boxer.

We set up the camera for the families to bring in whatever photographs or memorabilia from their man’s life, and then we chatted to them.  Jane’s great skill was in inter-cutting poignant moments of them as they were and then shots of how they had been in the past with voice-overs and poetry.  Other stories also appeared but these were less developed.

The Territorial Army Captain has been a giant of a man.  When I met him he was reduced to a thin, head-dipping patient and then, later, only able to sit in a sling suspended from the ceiling.  His wife shared photographs of them camping in the south of France, he was throwing his head back laughing.  Then in his uniform and an extraordinary overhead shot of a military maneuver that he was commanding.  In each case, and his in particular, it was hard to credit that this was the same man.  By the time I met him, he did not speak at all though he occasionally made a noise not dissimilar to a baby.  One time, his wife visited with his grandson who was, perhaps, 4 years old.  “It is important that he meets his grandfather,” she said, “I wouldn’t have chosen for him to meet like this, but it is what it is.”  She had such dignity.  He’d worked in insurance very successfully, and having just retired, things started to go wrong.  They made a joke of it: he left his bike at a shop, put things back in the wrong place.  She knew it wasn’t a joke when, one day, he went into the kitchen and he couldn’t remember where the cups were.  They’d been in the same cupboard for 25 years.

The footballer had played for Bolton and England.  He was a defender.  When he was sold to Tottenham Hotspur, he’d been the most expensive defender ever to that date.  His wife said, “We were like the Beckhams – our pictures were always in the paper!”  And you could see that they must have cut a very handsome couple, because they were still attractive then in their 80s.  He said a few things, but nothing about what he’d achieved more just asking for cake and a cup of tea.  “He can’t remember it,” she said, sadly.  “They think it might have something to do with heading the big heavy leather ball,” she smiled, but not in a happy way, “and that’s what he did: day after day.  It was like a cannon ball when wet. Imagine that – hitting your head against a solid object dozens of times a day for years. No wonder he’s like this. But he provided us with a good life, he did and we enjoyed it.”

The wife of the fisherman was initially embarrassed by her husband who, somewhat younger than the others, in his early 60s,  swore like a trooper.  “It’s all the language he’s got left.  They say that cursing is the last thing that goes – so whilst it’s not the filth you’d want to come out of his mouth, at least I get to hear him, because one day he’ll be silent and there will be nothing.  Nothing at all.”  She shared with us a video of him fishing – this wasn’t run of the mill stuff.  It was competition level and he was very good.  He may even have been a national champion. In the videos he is laughing and waving as he hauls in another amazing catch. She’s there too, with a headscarf on and looking for all the world like Marilyn Monroe.  “We lived our lives,” she said, “We really did.  We went off here, there and everywhere and whilst it’s sad – this catastrophic stroke – I often lie in bed at night and wonder if we should have done something differently?  Yes, we could have lost weight.  Yes, we could have ate and drank a bit less.  But we loved it and we were in love – I didn’t want this of course, what’s happened to him now – but I couldn’t ask for more.”

The final man who featured in the video was a boxer.  His partner unrolled posters of his bouts: he and his brothers were street fighters who’d taken up the more disciplined version of the sport.  “They definitely fought too much; they needed to make a living.  You’d think that you earn a lot on the under card of some of these fights, but you don’t.  You earn a tiny percentage of the purse.  And so he fought and fought and fought.  And he shouldn’t have done.”  I looked at him – a man with dark curly hair and sparkling eyes.  I could see his charm.  “He lived hard,” she said, “He lived a hard life: a jobbing professional boxer at night and a labourer by day. But he survived. Just about.  I don’t doubt his lifestyle didn’t help him in the end – but he was so poor, and he did what he had to do.”

Jane spent weeks on the video, finishing it.  She worked way harder on it then I did and for many more hours than she was paid for.  I’d ring up and say that we really needed to get finished soon and she’d say, “yes, yes we do.”  She was finding it hard to find a studio to do the final cut.  And then she did, and the finished product arrived. And, thanks to Jane, it was brilliant, moving without being soppy and powerful too.  The commissioner and the families were delighted.  We launched it, and an audience came, and the families took home a version.

It’s gone now and I don’t have a copy.  Disappeared.  It was on Vimeo for a while but the link doesn’t work any more.  It’s  a metaphor that I don’t want to over do – because each of those men are dead too, gone – the way of all things I suppose.

About six months later I heard that Jane had died.  I believe she was 32.  She took her chance with nature’s cures and they didn’t work.  Perhaps sometimes they do?

So I am the sole-survivor I suppose and the memory of those amazing men on that ward, and the brilliant Jane lies within me and it remains vivid in me as if they lived just yesterday.

 

 

 

 

Time and Tide

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My grandmother Elsie served mashed potato from an ice cream scoop. It would sit, bosom like and a little uninviting on the plate like the rock of Gibraltar. Curiously, I don’t remember what else was on the plate. Chicken? Carrots? Sprouts? I don’t know much, but I’m fairly certain the potato shouldn’t be main feature.  She lived at number 52, 6th Avenue: the house directly behind the library and among it’s many features was an outside loo that was equipped with Izal Medicated (look it up) and, when things were tight, newspaper cut in squares.

I liked her. She was easy to like. She had a little twinkle in her eye and naughtiness in her soul (and, quite frequently, in reality.) She had had a hard life – you could tell from the dip of the shoulder and the greyness of her hair. In my memory (although perhaps not in reality) she always wore a flowery wrap-around pinnie and fur-lined ankle boots with a zip at the front.   This bit can’t be right, because even in the frozen north of Hull we had summer and no one wears fur-lined boots in August.  I saw her a lot: we’d walk to her house as a family group every fortnight or so and I’m struck by how, because I saw her a lot, I can’t remember much specific detail about her: she was just always there – smiley and, by the time I knew her, benign.

She taught me to knit.  I learned this sitting on the floor looking up so now I knit backwards but as I do both purl and knit the wrong way, it comes out right.  She was encouraging: and I am certain that I made her at least one hat that she dutifully wore.  I always sewed her and my grandpa a tea cosy (and miss spelt grandad – as you do – although she evidently didn’t mind.)

She had a series of operations across her lifetime, mostly gynecological and was in and out of hospital. I don’t remember the detail but I do remember the visits. By the end, her insides were mostly removed or re-arranged. She was a living, breathing miracle.

She also made the best cakes and biscuits ever so that her house had the smell of sugar and baked goods: maids of honour, fairy cakes, flies graveyards, short-bread, jam tarts and all manner of other stuff. When we visited, we were spoilt for choice: but as the choice was limited to one it was often traumatic to ensure that you got the right one. For me, it was Maid of Honour. Always. Puff pastry shell, with curds underlined by almond and jam. I will never taste such wonder again. It was extraordinary that she could create such magic in the dinginess of that kitchen which was bleak: but wonderfully practical.  She baked on the kitchen table leaning over so that her back grew sore.  It was, for them, the best house – a council property that they saw as an extraordinary gift from the state.  The sink tap had a rubber nozzle on the end that could direct the water were it needed to go, and a jar full of the ends of carbolic soap (pink in colour, I think) which she would later press into a new, useable bar later down the line.  This was a legacy of the war: a practical no-nonsense make-do and mend approach that we could do with adopting again.

Legends surrounded Elsie. Like the time, for example, that her son locked her in the toilet and then she chased him half way round Hull and walked him to the police station for his crime. She was not above raging and rampaging the streets if her family strayed or someone upset her and, by all accounts, she had a vicious temper (though I never saw it.) But mostly it was the richness of her language that has been her legacy (look away now if you’re easily offended.)

So, you’d say, “I wish I had x or x or x.” And she’d say (as my mother said after her), “Wish in one hand and shit in the other and see which gets fullest first.” These words often dance around my head in the work context, but I’m smart enough to know that that’s not for sharing… or if a meal was hot and you made the not unreasonable observation that it was, she’d say, “You sit with your arse in the oven and you’d get hot.” Quite.  There were no flies on Elsie.

She was somewhat younger than my grandfather – and he died long before she did. I was never certain whether she got over this.  She also went deaf very early and I have a strong recollection of her being isolated because of it.  I have a visual memory of her sitting in my Aunt’s house underneath the budgie and not being part of the conversation – these were knockabout things that moved fast over numbers of people and it was hard to keep up when you could hear it all!  I am not sure how this isolation occurred or whether it was a deliberate ploy on her part.  I like to think it was: I like to think that the world in her head was somewhat more exciting than the world around us and she’d retreated because it was the best place on earth.  As time moved on, and she began to get elderly she withdrew further still and, one time, she disappeared.  By that stage she was in an old people’s home and though she re-appeared in time for tea, no one knew where she’d been.  In my head she had spent the day on one last adventure…seeking out a few final thrills on Beverley High Road, holding up the post office with her sawn-off umbrella and hiding her stash in the church yard of St John’s Newland.

I visited her in the old people’s home but she didn’t really know who I was.  She called me Joyce – which is my mother’s name – and that was good enough for me.  There were dozens of older women in the lounge ,one of whom kept standing up and saying, “What am I doing here?  Where am I?” only to be comforted by a nursing aide that she was exactly where she should be and it wasn’t time to worry.

My grandmother Elsie died soon after that visit and it was very sad.  I don’t remember going to the funeral and I suspect I didn’t because I was elsewhere – where, I don’t recall.  But I did, a few years later, take part in a Christmas concert at that old people’s home.  Half way through Once in Royal David City, that old lady stood and shouted, “Where am I?  What am I doing here?” and she was comforted again and reassured and I was grateful that my grandma hadn’t been subjected to that rather sad purgatory over the preceding two years.

 

(Many apologies for the lack of comments.  I am in a very busy work period and also lots of trips for family and friends.  I will catch up!)

 

Two and Two makes zero…

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“Cystic Fibrosis (CF) is a genetic condition affecting more than 10,800 people in the UK.  You are born with CF and cannot catch it in later life.”  Cystic Fibrosis Trust

Before going to University and still certain that I could change the world (single-handedly) I volunteered with a charity that supported parents with disabled children.  I met the volunteer co-ordinator, Davina at a predesignated spot and she told me all about the charity.  This was in the days before safeguarding and DBS checks so I happily got into her car to go and met the parents I would ‘baby-sit’ for (not my words!) All was going swimmingly until, as we walked to the house, Davina told me that she had got involved in this charity because two of her children had died and she just felt that she needed to put something back by supporting parents in need.

I’m aging myself here but this must have been 1982/3 and she was evidently reconciled – if deeply sad – about this shocking thing that had happened to her.

“I got all kinds of support from all sorts of people.  I was devastated of course, but I was expecting it.  They had CF and their prognosis was always terrible.”  Davina walked with purpose onwards towards the front garden of the house we were visiting.

“Does it help knowing that?  That they had a terrible prognosis?”

“No,” she said, “It didn’t help at all. But the schedule of caring for them was unrelenting.  Day and night I would have to help shift the mucus from their system and their hearts and lungs were compromised.  Some families get luckier – their children are less severe, they live a little longer but they still die sooner than they should.”   Davina sighed and then she put on a bright smile.

I didn’t know what to say.  But she was a woman of purpose, and strode towards the house…and I trotted behind hoping she couldn’t see the waves of sadness I felt on her behalf.

The family I met lived on a housing estate called Bransholme, and their house was absolutely boiling hot.  “Sara likes it hot.”  I have always been a cold person but still I found myself removing layers.  The job I was to undertake was to come back on a Saturday night and look after Sara whilst her parents went to the pub.  Sara had a learning disability and I learnt a very important lesson: in spite of the myth that everyone with Down’s Syndrome is jolly and loving, she was a royal pain in the arse.  I looked after her 3 weeks running and each time she basically wanted to eat her body weight in confectionery, biscuits and cake – and I’d been told that she absolutely could not have these items because she had a very bad heart and was on a diet.   This was not something Sara was interested in at all.  In fact, I spent the whole evening trying to wrestle Mars Bars and digestive biscuits our of her sticky paws (her fingers fat with poor circulation) which was followed by mass weeping, and tantrums.  I was very relieved when her parents arrived home. And even more relieved when a few weeks later I went to university and could, with total honesty ,say that I wasn’t available to look after her any more.

I have 3 degrees (I know, greedy) and my first is in English.  It’s probably hard to believe this given this piece of information but I was a working class kid on my first course (and the first in my family to go) and I was very much out of my depth.  It was a well-subscribed course but even so I was staggered to discover that two people had Cystic Fibrosis, both women Helen and Anna.  They were very different: the first, Helen, was a tiny waif like girl, who was bent almost double and who shared with Sara the bulbous fingers of someone whose heart was failing.  Helen’s hands seemed huge relative to her body, and as I was still in my changing the world mode, I tried very hard to make friends with her.  She was frail but I wittered endlessly as Helen walked with me to my room and we spent an awkward hour over cups of tea.  She was in my writing class and she was brilliant.  She had lived a hard life attached to machines.  Helen said that her dad was a doctor and he could not help.  I thought about this for a long time – imagine understanding the body and medication and actually being totally helpless.

I remember one of Helen’s poems still – an extraordinary feat for an 18 year old, about the marking of time and how it was slipping away.  The poem drove through a rhythm  of the heartbeat, and the machines that kept her oxygen levels up through the night.  And still I did not anticipate what was inevitable.  Half way through the spring term Helen died and the writing tutor told us in hushed tones.  I was sad, but as she had been absent for a few weeks and as my overtures of friendship had been well-meaning but futile, I think I just shrugged sadly and moved on.

The other girl with Cystic Fibrosis on the course, Anna, was a whole different kettle of fish. She had a reckless attitude to her condition but she enjoyed  much better health than poor Helen: if death was was going to get Anna she was going to make sure she had enjoyed large quantities of alcohol and a number of illegal substances before she went.  She was mostly well – but the diet, the lack of sleep, the cigarettes (unbelievably) and the occasional e meant she had periods were she disappeared, and retreated to her parents’ home to recover.    I don’t know what happened to her – Anna graduated like the rest of but as that was in 1986, I expect she is no longer with us.  That was 31 years ago and she’d be 52 if alive.   Nowadays the mean age for survival with CF is 41 in the UK so my feeling is she has gone the way of all things.

It was a strange business encountering this condition so often when I’d never heard of CF and then seemed to find it at every corner.  A part of me wanted to share what I learned about it with Davina, so I rang her about volunteering offering once again look after the difficult Sara.

“Davina here,” she said, bright and breezy.

“It’s Mary – I wondered if Sara still needed looking after on a Saturday evening?”

“Oh love,” she said, “Did no-one tell you?”

I knew what was coming, “How did it happen?”

“She just didn’t wake up.”

“Her heart, love.  Her mum and dad are fine though.  They knew it was coming.  Want me to find someone else?”

“Probably not worth it, I guess?”

“I’ll have a look and get back to you,” and with that Davina signed off and why I thought she would open up to a woman of 20 I couldn’t say.

Davina never got back to me and I then got a job at a printer’s.

Please donate to the Cystic Fibrosis Trust if you wish