A Gush

It’s been a brilliant week. Time for a bit of Saturday gushing.

On Monday we had a Cowley team meeting. We haven’t had a Cowley team meeting for ages. There has been a growing tension amongst the support team for a while that has been unusual and unsettling. I was nervous about the meeting and was determined that we didn’t drown in the small pools of negativity and remember that Steven is the most content he has ever been and that his unique relationships with each member of the support team played a big part in that. The two hour meeting was incredible. Despite the tension, everyone spoke with an honesty that was breathtaking. And halfway through the meeting, the mood changed and all the tension evaporated. Completely spontaneously people started giving positive feedback to each other. They owned the part they had played in the problems and gave heartfelt praise for the good stuff. Steven was delighted to have his whole team together. He sat on the sofa but after 5 minutes got bored and went off to do his own thing. Every few minutes he popped back with a huge grin on his face. At the end of the meeting, one of the team made omelettes for all. All week long, whenever I’ve thought about the meeting I’ve had a soppy smile on my face and a lump in my throat.

I’ve been following several social media discussions this week about a call for the use of body cameras to protect people with learning disabilities in various settings. I’ve been finding it very difficult to square my experiences with those people who are pro cameras. I cannot imagine asking the five guys in our support team to start wearing surveillance equipment. What on earth would Steven make of that? What would it say about his dignity and rights to a private life if he was filmed in his bedroom? Getting dressed, having a wank, sleeping? The meeting and our overall relationship was a success because we’ve all taken the huge, scary leap to trust each other. That trust is both very fragile but the rock hard cement that holds everything together. I’d hate to jeopardise that by allowing my fears or distrust to set the agenda. Rather than protect Steven, it feels like it would make him more vulnerable.

A random, unconnected series of gushes – I’ve received my appointment letter from the hernia specialist. I have become very self conscious about my unsightly bulge and although it means another operation, I’m looking forward to having my internal girdle fitted. The genealogist is cracking on with the task I set her and yesterday I had lunch with my cousin and collected some more brilliant photos of people from times gone by. And after watching the action from the Supreme Court, I’m now more hopelessly in love with Lady Hale than ever. It may sound fanciful but the feel from the Supreme Court judges wasn’t a million miles from the feel at Monday’s team meeting.

Finally, my copy of Social Work, Cats & Rocket Science arrived and I read it in two sittings. Marvellous stories, beautifully written. Oodles of wisdom, humanity, values, rights, humour and grace. I’m moved that I have such cool, sussed friends like Elaine, Mark and Rob. And it comes with the added bonus of a chapter written by a hernia inflicted bloke from Cowley.

20190919_182136

On Thursday, I had a chat with Steven about stuff. He’s been working his way through his Live Aid and Live 8 DVDs.

“Watched Elvis Costello on Saturday with Michael. Watched Queen on Sunday with Francis. Watched Paul McCartney and his friends on Monday with Des. Watched Mick Jagger and David Bowie on Tuesday with Alan. Steven Neary is a happy man”.

Together. Trust. Interest. Love. Allison Moyet.

End of gush.

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A Matter Of Bicycles

I’ve been reading all manner of books over the past month as background for my new project. I’ve done first hand experiences of the workhouse; the Victorian lunatic asylums; even the Port Royal earthquake disaster of 1689. On Saturday, the postman delivered the most intriguing one to date – “Bicylcles in Wartime”.

This came about after I discovered that one of my great grandfathers was killed during the Boer War whilst he was assigned to the cycling corps. It had never occurred to me that the bicycle had played a significant part in our army’s history but according to the book, bikes are still part of military operations as recently as Afghanistan. It feels so incongruous to me. Most people are familiar with the famous Kitchener recruiting poster – “Your Country Needs You”. One of the lesser known posters from that time carries the banner – “Can you ride a bicycle?” It conjures up images of Charles Hawtrey riding a tricycle around the set at Pinewood, ringing his bicycle bell whilst yelling “Get out of my way you great brute”. Steven wouldn’t believe me if I told him. He’d dismiss it as “Dad’s doing silly talking”. But it has thrown up that old dilemma for me again – how can you express humour in a situation that is deadly serious? After all, it was a war and my great grandfather died.

One of my counselling tutors was a bit crap. One of his often repeated mantras was “there’s no place for humour in the counselling room”. At the time, I’d never been in a counselling room with a real client but I wasn’t convinced he was right. 22 years later, I know he wasn’t right. Some of my best laughs ever have been with a client when we’ve both been bent double with laughter over the ludicrousness of being human. Dame Edna had it spot on when she observed to Jeffrey Archer, “If you can’t laugh at yourself Jeffrey, you could be missing the joke of the century”.

I miss the good old days of Twitter when smack bang in the middle of the horror of Connor Sparrowhawk’s death, the Justice for LB campaigners could find themselves in hysterics over the antics of the woman on all fours. I remember an hilarious weekend after we discovered one of the Southern Health governors had a moat around his home. The wit and laughter provided some degree of outlet from the unspeakable events that had brought everyone together.

In 1976, on our way back from my mum’s funeral, my Uncle Albert stopped at a petrol station to fill up the car and decided to put the car through the car wash whilst we were there. As the washing brushes were in full flow, the mechanism jammed and we were stuck there. After 10 minutes of sitting there with nobody noticing us, Uncle Albert casually wound down the window and shouted “Help”. We turned up for the wake soaked and bedraggled. All the mourners found this terribly funny but there was a tension around having a bloody good laugh at a funeral supper.

Often, when you are in the present tense of something traumatic and upsetting, it’s hard to find any humour. Back in 2010, it was tough to laugh during Steven’s year in the ATU. It’s only been in the last couple of months that I’ve been able to extract any humour from my cancer operations. I’ve still got some horrible images in my head but I can make a joke at my own expense, which in some way decreases the power of those images.

Steven has got a handle on this stuff. A few weeks ago, one of the support workers damaged his shoulder. He even had a few days in a sling. Yesterday, Steven was reflecting on recent events: “Michael can’t go to Mud. Michael can’t play Tiger Feet fast on his guitar when he’s got some bad jip in his shoulder”. And he burst out laughing at the picture he’d created.

Cycling-Soldiers

Good Timing

I’ve always been fascinated by our relationship with time. How and where do we place ourselves in time. How we catapult ourselves from 2019 to 1981 and back again in a blink of an eye and without the remote intention to do so.

One of the earliest family stories told about me probably set the marker for one of my gauges of my relationship with time. The story goes that as a toddler I was energised and excited by the song Good Timing by Jimmy Jones. Legend goes that whenever the song came on the wireless, I would dance so vigorously that I would topple over the high chair I was sitting in at the time. Although I remember the story, I obviously don’t remember the moment but if Jimmy Jones pops up on my playlist today, I know I find it hard to make my feet behave so can imagine the peril I might have been in as a toddler in that high chair. One thing the story tells me though is that right back to my nappy days, music has influenced my relationship with time.

I try to live in the present. And for the most part I think I succeed. There’s a silly game I’ve played with myself for donkey’s years but the older I get, the more poignant the game becomes. I’ll illustrate the game using as an example a song Steven included in his compilation tape on Saturday. It was Tubthumping by Chumbawumba. The song starts and I’ll go, “Ooh. It’s Tubthumping by Chumbawumba. That was 1997. 22 years ago. 22 years ago I was 38. In 22 years time I’ll be 82”. You can imagine how depressed I get whenever I hear Chirpy Chirpy Cheep Cheep…. “That was 47 years ago. In 47 years time I’ll be….” It’s not a productive game but I’ve programmed myself to play it. It doesn’t depress me but it means that lots of songs leave me in a constant state of flux.

Steven has his own way of tracking his relationship with time which is both more straight forward yet more complicated than my way of doing it. Each day Steven takes a photo out of the albums which he wants to discuss with me at great length. At some point during the conversation, he will place the scene in its historical timeline and he has three methods of achieving this. Yesterday, his photo of choice was a photo of me and him sitting on the floor opening Christmas presents in 1999. Christmas photos always prolong the conversation because he’ll want to talk about each unwrapped gift as well as all the books and videos on the shelves. But eventually we get to the time bit. “Lou Bega was singing Mambo Number 5”. “Steven Neary was in Hillary McDermott’s class”. “Steven Neary and Mum and Dad went to Weymouth in the summer holiday caravan”. He’s correct on all three counts. But it reveals his markers: what class he was in, where we went on holiday and what songs featured on that year’s Christmas Top Of The Pops.

Although it’s 12 years since he went to school, Steven still uses school holidays to mark the progress of each year. Yesterday I told him that it was the 1st of September and that set him off into reminding (reassuring) himself of the various landmarks between now and Christmas: Back to school assembly, Harvest festival, the return of Strictly Come Dancing, Halloween, putting up the Christmas decorations, having a tub of cheesy bollocks on Sunday evenings. I’ve more or less forgotten Jimmy Jones but Steven shows no sign of forgetting the major school events.

I’m intrigued by Steven’s relationship with the past that existed before he was born. When it comes to music he’s got an incredibly accurate handle on it. He knows that Kim Wilde was having hits when he was still a seed. He knows that The Rubettes were having hits before Kim Wilde. And after I added Fats Domino’s Blueberry Hill to our repetoire he knew that was around when “Mark Neary was a little seed”. But outside of music, it’s never been quite so clear cut. Until last week….

A lovely thing happened last Wednesday in my research for my next book. My cousin sent me a photo of my grandfather. This is my mum’s father who died in 1951, 8 years before I was born. I’ve never seen a picture of him before. What I know about him comes from the bald information off Ancestry.co.uk. Even my relatives who were around when he was alive have very patchy memories of him. He was that very quiet man, sitting in his armchair in Florence Road and working out what bets to put on whilst my grandmother ruled the house with her rod of iron. In the photo he looks a big man, smiling genuinely and he looks pretty content with his lot. The photo was from 1948. Three years later he was dead. I hope he never played the Chumbawumba game.

This photo became another person to fit into the pictorial family tree that I’ve done for Steven. He loves this stuff. He loves making connections and I think he likes being part of something much bigger. But as I explained who Granddad Charles was, I could see him making some serious adjustments to his internal cataloguing system. He took himself off to his bedroom and for the next half hour I could hear: “Steven Neary’s daddy is a man called Mark Neary. Mark Neary’s mummy is a lady called Nanny Beryl Neary. Nanny Beryl Neary’s daddy is a man called Granddad Charles Worley”. He’s got the chronology and the relationships sorted but I’d love to know where he places Granddad Worley in time. Pre Rubettes obviously. But where does he go from Blueberry Hill? Possibly down the same historical cul de sac I frequently find myself in.

I got top grade in my History O Level. I did the first year of A Level and the great Featherstone Road High School scandal of 1976 blew up and I had to abandon history. For O Level we did the Napoleonic wars and at the time I thought I was an expert on the subject. A couple of years ago I discovered that my great great grandmother Louisa was born on board HMS Warspite in 1811 in the Strait of Gibraltor during the midst of one of the major battles of the Napoleonic wars. This was a real person. A blood relative. And it made me realise that back in 1976, I had no sense of real time at all. It was just a damn good story to 16 year old me. But placing Napoleon into my own historical timeline would have been beyond me. Steven is much sharper than 16 year old Mark Neary, so I guess he’ll work out his own time relationship with Charles W Worley.

And that’s how it should be. Because our relationship with time is one of the most intensely personal things we have.

Take it away Jimmy

 

“I Didn’t Think”

Here’s a small, pretty insignificant story in the overall scheme of things but I think it says a lot about what life is like when you work in a system where the system becomes far more important than the people you are meant to serve.

At the end of June I had my cancer check up and everything was fine. The CT scan showed no trace of any cancer and the blood results were all good. Three days after the appointment I received a letter confirming my next appointment will be June 2020. For the first time in a year, I permitted myself to breathe again. And it’s worked. I haven’t been preoccupied with cancer. Most days I don’t think about it at all and when I do, it’s more about processing some of the experiences of the past year rather than being fearful of it returning. I’ve been getting on and doing stuff and have been focusing on the present and the future.

On Saturday, just as I was leaving for Steven’s, I received a letter from the hospital informing me that they (unfortunately) have to cancel my appointment for June 2020 and have rearranged it for 23rd August. Today. They brought the appointment forward by 10 months.

Anxiety levels immediately went through the roof. What have they found? What did they miss two months ago? And I had to sit with the anxiety all weekend as there was nobody available to contact. On Monday, I spoke to three different medical secretaries but none of them were prepared to discuss clinical matters with me. All of them held the position that I would have to wait until Friday.

Whilst tossing and turning in bed on Monday night, I remembered that on the day I was initially given the cancer diagnosis I was introduced to my “keyworker nurse”. I haven’t spoken to her since. She was nowhere to be seen during my two spells in hospital. There was no follow up afterwards. On Tuesday morning, I dug out her details and phoned her. I left a garbled, slightly emotional message on her voicemail. Nothing. I phoned again mid afternoon. Nothing.

On Wednesday morning she called me back. By this point, my anxiety had turned to anger. If it was bad news, I was angry that it had taken them so long to notice they’d missed something. If it wasn’t bad news, I was angry at the thoughtlessness of their letter.

She couldn’t have been more apologetic. She reassured me several times that everything was fine and the appointment was purely to discuss my “management plan”. I’d been discussed at last week’s multi disciplinary team meeting and the general consensus was I needed to go back to see how I was managing. And then the killer:

“I’m so sorry Mark. I genuinely didn’t think about the impact the letter might have on you”.

I believed her. She genuinely didn’t think. Nobody did. Nobody thought about the potential effect a bland letter that says nothing may have had on someone who’s been wrestling with their mortality for the best part of the year. Why should they? This is about systems. About processes and procedures. It’s not about people. And people with bloody annoying things like fears and feelings.

I couldn’t even feel cross with her. She was too disconnected to even engage on a human level with. It’s not her fault. Any humanity is in spite of rather than being a prerequisite. I’ve experienced this so many times with professionals involved in Steven’s care that my bar is set very low. I guess my shock is because this was a different arena, I lulled myself into having an unrealistic expectation.

I had the appointment this morning. She was right. There is nothing to worry about as there is no sign of any cancer. They confirmed that the bulge I’m carrying is a hernia because the abdominal muscle wall didn’t repair properly after the surgery and I’ve been put down for non urgent surgery. I had planned to talk about the letter but towards the end of the appointment the consultant asked the nurse to take me off to weigh me. After leaving the weighing room I headed back towards the consulting room but the nurse stopped me and announced the appointment was finished. Go home and wait for your operation date. So unable to share my thoughts with the medical team, I’m sharing them with you, dear reader.

I’m just left thinking that “I didn’t think” serves as quite an apt descriptor of so many of our public care services.

Liver

Some very good news.

We got the results of the blood tests Steven had last week. Everything was normal. The biggest relief was that the liver functioning results were fine. After the terrifying news 5 years ago that Steven’s liver was packing up, it feels incredible that we’ve managed to reverse that process.

I forgot to ask about the weight results at the time but checked yesterday and Steven has lost nearly 14 stone since those dark days in 2014. By cutting out the anti psychotic drugs that he didn’t need to be on in the first place. That he was introduced to because the people at the ATU didn’t have the imagination or the humanity to notice that they were killing him. Instead, they fell back on parent blaming and I was trapped in endless, pointless dietician meetings. I still feel so angry about this.

The weight has been reduced without any major changes to Steven’s diet. He eats practically the same stuff as he did 5 years ago. Diet was never the problem. It was the fucking drugs. He could still do with losing perhaps another 3 stone and the weight loss has definitely slowed down after the initial shedding but its heading in the right direction.

The medication was Killing him and now he’s got his life back.

Ironically, Steven and I are heading in opposite directions, weight wise. This time last year I was planning the over 60s bodybuilding competition. At my last check up, they discovered why my gut has expanded considerably. During the operation, in order to get to the tumour, they had to cut through the abdominal muscle wall. Unfortunately, it didn’t repair properly and collapsed and now sits on my lap like a visiting infant. Ironically, before they discovered the cause of the problem they offered to refer me to a dietician, again assuming that food was the problem. I’m having to get my head round the idea that no amount of clean diets or sit ups will make any difference to this protuberance.

I can just about cope with that. I’m 60. I can get pass the idea of having a six pack. But Steven has his whole life ahead of him. He needs his liver. He needs to be able to dance to The Thompson Twins without gasping for breath. As long as he is in his own home with carers that care, that can happen. There is no way he will end up on deadly drugs whilst he is a Cowley man in his own home.

But if someone ever decides he needs to be back in an ATU…….

The Pop Stars Dictionary: A Saturday Quiz

A while ago I wrote that I’m compiling a new Pop Stars Dictionary for Steven for Christmas. One of the support workers offered to put the whole lot together as a book. I was very touched but felt he might be a little over confident in his ability to name them all.

Here’s a few that have stumped him. Needless to say Steven is intolerant of such lack of knowledge. He can name them all in a nanosecond.

How many can you put a name to?

 

Update (14th August)

The answers:

Carl Douglas

Whitfield

The Tymes

Scott Fitzgerald and Yvonne Keeley

Sandie Shaw

The Sweet

Rock Follies

Millie Small

The Mamas & The Papas

M

The Love Affair

KC & The Sunshine Band

Haircut 100

Gala

Edith Piaf

Craig Mclachlan

Darts

Divine

The Bloodhound Gang

The Hootenanny Singers

Aneka

Thunderclap Newman