Today (14 May 2021) would have been Steve’s 60th birthday.
When posting up my last blog, for Steve’s 10th Angelversary, I was in two minds as to whether I was going to carry on blogging. However, where 60 would have been such a momentous age, I wanted to come in and reflect on some special and happy memories.
I have so many photos and memories it was hard to select just a few. There’s probably too many in this blog anyway but at least I resisted wedding and cruise ones. The selection kind of chose itself from ones that popped up on my digital frame as I was looking for ideas for this blog.
I’ve deliberately not dwelled on the Huntington’s disease (HD) factor. It is mentioned time to time of course but our life wasn’t always about HD. Steve’s life wasn’t always about HD.
It’s at this juncture I should add for anyone who has popped in having responded to the PinkFloyd; Cambridge; WishYouWereHere tags/hashtags and not aware of mine and Steve’s story, the link to The Pink simply relates to the last photos where we visited Cambridge. I have also used the lyrics for Wish You Were Here as inspiration for my closing poem for my late husband Steve.
Whatever your reason for checking out/stumbling across my blog, I thank you.
The first photo was taken by a friend and actually charts the very first day that Steve and I met! As you will see from the below I am not in it.
On Friday 16th May 1986 I joined a group of mainly strangers for a weekend trip to Denmark. The photo was taken by Keith May. It shows Steve and his girlfriend Celia with Rita and Paul behind them. Steve was a friend of Paul and Rita. Rita was a work colleague and had asked me to make up the numbers on a trip her gang of friends had booked. I hadn’t met anyone going on the trip except Rita at that time. As I had nothing better to do that weekend I said why not?
Fast forward to Monday 17 August 1987 which was Paul’s birthday. Steve and Celia had split up a few weeks earlier and I was trying to get my head around whether I wanted to get back with my ex fiancé who wanted to make a fresh start.
Rita called me that afternoon and asked if I wanted to meet up with the gang for Paul’s birthday drink. Odd as it was a Monday night but again I said why not? Turns out Steve fancied me; I fancied him; and the rest as they say is history…
One of our first holidays was in St Helier on the Island of Jersey. We loved the place and went back again a few more times. I suppose I have mixed feelings about the last time we visited in 2005, which I blogged about HERE, but still love seeing how happy Steve looks even then.
Although Steve is playing second fiddle to the imposing Gunnery Tower in this 1989 photo, I think he looks fab in his jeans and leather jacket. He was the kind of guy who looked as good in jeans and leather as he did in a suit and tie. On the other hand, in my 1989 one taken at Jersey Zoo I come across more rock sick than rock chick.
1991. This one was taken at St Brelade’s Bay by a passer-by who kindly offered to take a snap.
This one was taken in1996 on Steve’s birthday exactly a quarter of a century ago.
2005 and Steve still looks happy to be back in Jersey all those years later. For comparison of aging I dropped in one of myself taken the same day.
Photos from the eighties; nineties and the noughties. I think Steve aged a lot better than I did lol.
ISLE OF WIGHT
Here we have a perfect stranger doing a version of ‘photo bombing’. Makes me laugh as she clearly posed, as opposed to holding back off-shot or just walk by naturally.
There’s also another thing that cheers me up. For some reason I had it in my mind this was taken during one of our many Bournemouth trips. In 2015 I even cited the photo in my blog Fairness of Awareness as a Bournemouth one. With so many trips to Bournemouth and coastal walks it seemed it was the likely pace.
With a nagging feeling I might be wrong I did some more searching as to clues. I felt a complete twit when I saw the answer was staring me straight in the face!
I honed in on the background and could make out a banner to the right of Steve. ‘SHANKLIN CHINE’ could be clearly seen and it was for the 2000 exhibition ‘Century of Solent Sea and Sail’.
That told me it was taken on our trip to Isle of Wight in 2000. The only other holiday we had that year was a trip to Ostend but sadly I have no photos of then. It was lovely to be able to have a photo from how Steve looked in 2000, and such a lovely smile at that.
In 1999 we had booked a two week holiday in Lindos in Rhodes. My mum had passed away a few months earlier and we figured we needed a bit of rest and relaxation in the sun to help aid recovery from what was a very sad time.
Late in the afternoon before we were due to fly to Rhodes, I got a call from the travel agent. She said the resort we had booked was oversubscribed so they were switching our resort last minute. To add insult to injury, they had swapped our type of accommodation. We had booked a lovely self catering apartment in a complex which had no children, to a large family friendly all inclusive hotel resort.
I resisted the urge to cut my nose to spite my face and tell them we wanted a full refund given we had no time to book anywhere else. I said to Steve we would take a chance and sort when we arrive if not happy. Not the best way to start what was supposed to be rest and respite from grief for both of us obviously.
Late 1998 I had started a new job which would mean I’d need to take professional accredited exams in purchasing and supply. One of the modules I had to study was contract law. With all the crap things that had happened already that year I was up for a fight by then.
The Local Agency Rep initially told us the issue was not his problem, and that it could only be dealt with when back in the UK which would be too late of course. I argued our case and that he had a duty to deal with our problems there and then. It could have backfired spectacularly but Steve showed his trust in me and it paid off.
Within 24 hours of arriving, we had been transferred from a pokey room with kids screaming all around us; and dodgy all inclusive food and drink, to a lovely self catering apartment in another nearby resort all at no extra expense. The Rep even paid for cabs to and from the resorts for us to check the place was suitable enough before transferring.
The photo of Steve’s smile was taken moments after we arrived and put the kettle on. The look of happiness on his face cheers my heart. I love the fact Steve backed me 100% and had faith in my knowledge and tenacity. I’ve known a lot of people who would have told me not to make a fuss or upset the apple cart. His support and back-up saved our holiday which was just what we both needed.
In 2005 we took an organised coach trip to Llandudno. Our cab arrived late. In the process of phoning the tour company to see if the coach would wait a few minutes and not leave us behind, I managed to leave my mobile phone in the back of the cab when rushing out to let the driver know we had pulled up.
Needing a new mobile urgently, my first priority the next day was to go to the Town Centre shops. Because of this, poor Steve missed out on the planned excursion to Anglesey which he had really been looking forward to.
He was a complete sweetheart and thankfully we were able to still do the following days’ excursion culminating in a ride on the Snowdonia Mountain Railway. These two photos show Steve’s beautiful smile during a stop off in Betws Y Coed and on the train itself. Despite having gashed his lip when shaving, his inner happiness comes through. The photos were actually taken with the same digital camera. It’s a pity the photo quality didn’t do him justice on the train.
In 2007 I asked Steve if he would like to go back to Llandudno. We ended up going back several more times during 2007/ 2008 and made lots of happy memories there while we still could.
Steve finally got to see Anglesey and it’s famous Station and we took on lots of other day trips. It’s fair to say Steve isn’t showing much by way of smiling at Llanfairpwll. To be honest we both thought it was a bit disappointing as we might just as well have been back in the shops. That name sign is still mightily impressive though.
The Pier was right next to the hotel we stayed in regularly, and spent many a happy hour in the arcade. The photo below is from 2007 on the Pier and I made a slideshow of elements of a 2008 trip. (see Video HERE).
We did a couple of trips to Great Yarmouth. The first was in 1991 when we stayed at a holiday park in Hemsby, and the second was in 2007.
On that second visit we stayed in a hotel on the sea front, opting for an organised coach trip which included a number of stop-offs and excursions. This photo was taken in the Lifeboat Café in Cromer. The photo makes me smile a lot as it seems to be something about the lifeboat blue background on the door that brings out the blue of Steve’s eyes.
As for the final photos…
Cambridge was a stop-off on the way to Great Yarmouth in 2007 and these photos make me smile where they were taken during one of those magic moments.
We had got off the coach and did a little bit of walking but didn’t want to go too far. We found a lovely pub on the River Cam called The Mill to have some drinks and cake and watch the punting on the river. With needing to be close by to where the coach would be departing from, we headed back that way.
The coach was there, but being early the driver was still on his break so we decided to go to the pub on the nearest corner to enjoy another drink and use their facilities. The pub was called The Anchor.
When we walked through the door there was a little area immediately to our right so I parked Steve at the table and went off to the bar to fetch the drinks and ask where the loos were.
I got back with the drinks, satisfied that the loos were not too difficult to navigate, and as I went to sit opposite Steve I noticed a big black board on the wall behind him. We had managed to get seats directly under the sign highlighting that the pub was effectively the birthplace of Pink Floyd!
The Board reads:
“THE ANCHOR” WAS FORMERLY KNOWN AS “THE RIVERSIDE JAZZ BAR”. SO CALLED BECAUSE
OF A LOCAL JAZZ BAND THAT PLAYED HERE REGULARLY ON FRIDAY NIGHTS IN THE EARLY 60’S.
A CHARISMATIC YOUNG KID CALLED ROGER KEITH BARRETT AND HIS FRIENDS WOULD OFTEN SLIP
INTO THE PUB AFTER SCHOOL, SLOUCH QUIETLY IN THE CORNER AND TAP HIS FOOT TO THE BEAT OF
“THE JAZZMEN”. NOTICING HIS ADMIRATION FOR SID “THE BEAT” BARRETT, THE RESIDENTS JAZZ BAND’S
DRUMMER, THE LOCALS SOON BESTOWED ROGER WITH THE NICKNAME “SYD” SPELLING THE
PSEUDONYM WITH A ‘Y’ AS A MEANS OF DISTINCTION. SYD AND HIS FRIENDS WENT ON TO FORM
THE LEGENDARY PINK FLOYD AND SECURE THEIR PLACE IN ROCK HISTORY…
I got Steve to stand up and turn around and he was suitably stunned and impressed. Had we not been told to meet the coach in that area and got back with time to spare, we would have missed such a fabulous find. It was clearly meant to be! I was sad I didn’t actually get a photo of Steve’s reaction on seeing the board. Nonetheless, Steve often asked to see the photos I took when we returned home from that trip where he was such a Floyd fan.
Whilst Queen tracks were used for the Entry music and Reflection music at Steve’s funeral; the music played for Steve’s ‘Committal’ was the opening minutes of Pink Floyd’s Echoes. For anyone not familiar with this beautiful dramatic piece of music please do listen HERE. It still resonates with me when I hear Echoes and how perfect it sounded in the acoustics of the chapel.
Wish You Were Here; and The Great Gig in The Sky were other Floyd tracks I considered. At the time though, I didn’t feel emotionally stable enough to cope with the lyrics.
A video with lyrics for Wish You Were Here can be seen HERE.
As for the Great Gig in The Sky, I ended up incorporating lyrics into Steve’s Eulogy read by the Life Celebrant anyway:
‘With Steve being a great lover of Pink Floyd, Trish was going through Pink Floyd track listings for inspiration for this service. She came across a song called ‘The Great Gig in The Sky’. That seemed to fit in with Steve and his love of concerts.
Not familiar with that title, Trish put the record on… The song begins with a man’s voice talking over the intro music. She then heard the words…
“And I am not frightened of dying, any time will do. I don’t mind.
Why should I be frightened of dying? There’s no reason for it, you’ve gotta go sometime”
“I never said I was frightened of dying”.
The words seemed to be spoken just for Trish. It was the reassurance she needed. Indeed, Steve had NEVER said he was frightened of dying. He would now be at peace.‘
Syd Barrett died aged 60. With his mental health being too fragile, he had parted company with Pink Floyd before they wrote those songs. However, I don’t think anyone can take away though the importance of Syd in the Pink Floyd story. And I don’t think anyone could ever take away the importance of Steve in my story.
I suppose these blogs are my own way of putting up a black board for people in the future to stumble across and take a moment to read.
‘Lead role in a cage’? I suppose I could be. You were surely the star, In the war of HD. Trading hero for ghost? There’s no reason I see, Why a ghost can’t be hero? You’re still one to me. The fish bowl we swam in; Your soul found its way, To an Ocean in Heaven, Where you swim today. Will I make it to Heaven? I’m not really clear, But until I can find you, I’ll wish You Were Here.
Happy 60th Birthday Sweetheart
Today I have come in to blog on the day that marks ten years since Steve got his Angel Wings. I genuinely cannot comprehend the fact that it was ten years ago today that I was here at home, holding Steve’s hand, and watching him take his final breath.
I started this blog website just a few months after that day, on what would have been Steve’s 50th birthday. I actually gave the title of ‘I may regret this’ to my first post. Originally, I wanted it just to be a platform on which to promote my self-published book, which is called ‘Curse in Verse and Much More Worse’. Hence the name of this site.
Soon my blogging took on a new purpose beyond the quest to dabble in promoting my book and, in the process, possibly raising awareness of Huntington’s disease (HD). Writing in here became my outlet for sharing grief and my memories of Steve, alongside cataloguing events and landmark moments from before and after he passed.
Looking back over my diary and posts, I must admit I have been taken aback at how much we have achieved. I say ‘we” as I don’t think I could have done any of this without Steve still being somehow by my side. Creating opportunities and encouraging me in his own inimitable way. On that basis, over the last ten years we have been involved in so many things, both by design and by chance. I have given below some of the highlights, many of which I have blogged about.
MEETING HD HEROES. FOR EXAMPLE:
LOOSELY DABBLING IN POLITICS. FOR EXAMPLE:
Being asked to help our (then) Local Councillor – Matt Pennycook – in his attempt to be selected for Member of Parliament (MP) candidature. He was successful and is now my Labour MP. See HERE for the campaign video. I speak about how he helped me and Steve circa 2:08 minutes in.
Submitting a government E-Petition, calling on the government to look again at the treatment of people with conditions like HD being unduly assessed for benefits. It raised 4,000 signatures.
Attending various events; and being able to talk to dignitaries and MPs on matters of HD and Carer issues. Here I am at a 2011 ‘Carer’s Week’ event in Woolwich, talking with the Mayor of Greenwich – Cllr Jim Gilman.
Giving input into the Parliamentary Debate on those with HD in their family being unfairly discriminated against by the insurance sector. As part of that, Steve and I even got a mention in the House of Commons/Hansard publication. See HERE for the screened Debate video (scroll to circa 23:05 hrs.) and HERE for the Hansard entry.
SHARING POEMS; CREATING NEW WORK; AND SPREADING OUR STORY GLOBALLY (IN WRITTEN MEDIA). FOR EXAMPLE:
Providing bespoke pieces for organisations such as, the Huntington’s Disease Association (HDA), and the Scottish Huntington’s Association (SHA). See HERE (pages 6 and 15/16) for the HDA 2016 London Marathon event coverage; and HERE for my SHA ‘Guest Blogger’ piece.
Sharing an anecdote about mine and Steve’s Concorde flight experience with the Club Concorde website. Then by chance finding the piece reproduced on the BBC website; and then coming across the article being reproduced in a Smithsonian book about Concorde!
Being a contributor to Ian Donaghy’s book ‘The Missing Peace – Creating a Life after Death‘. The entry ‘On The Beach’ on page 185 reproduces my contribution.
SHARING POEMS; CREATING NEW WORK; AND SPREADING OUR STORY GLOBALLY (IN VIDEO AND AUDIO MEDIA). FOR EXAMPLE:
Being a guest on Meridian Radio to talk about HD and Carers.
LENDING SUPPORT TO OTHER PEOPLE’S CREATIVE PROJECTS. FOR EXAMPLE:
Using a bunch of photos and my very basic ‘Windows Media’ programme to create videos for my YouTube Channel.
Including videos for:
- Sarah Foster’s ‘Pie Challenge‘
- HD Awareness Week
- Jackie Harrison’s #GiveaToss4HD movement. See HERE and HERE.
- ‘Sybil On Tour’. This one involving my taking a minisybil to EVERY London Underground Station. In the process helping to inspire Jackie Harrison and her #sybilontour movement. See article HERE.
- Being a financial ‘Supporter‘ of Bridget Lyon for her biographical documentary ‘The Inheritance’.
RESEARCHING FAMILY HISTORY, LOOKING FOR A RE-EXAMINATION OF A POSSIBLE MISCARRIAGE OF JUSTICE.
Appearing on the BBC Programme – Murder, Mystery and My Family.
In the process of looking back over the last ten years’ posts, to remind myself of what I had shared, I was conscious of the occasions I worried about what to feature. Basically, I was in two minds about sounding unhinged!
I’m thinking of my blog posts where things have happened that seem to be too strange to be believed. An example here is the events around my getting back items from mine and Steve’s old flat. A flat we had sold ten years prior, and yet was still looking like a time-capsule in many respects. My blog post ‘COINCIDENCE OR SIXTH SENSE?‘ refers.
On the whole I don’t care what people think. I’m glad I got down written and pictorial evidence of the events that were occurring in my life whilst still fresh in my mind. It has actually served to tell me these things were not imagined, or my memory playing tricks on me. However they may be interpreted by others, these things actually happened.
I also wondered how I probably come across in terms of not being able to bury or scatter Steve’s ashes yet. And then there’s the fixation on finding pictures of Steve or us together.
It looks like I am not the only one grieving who can’t let their loved one’s ashes go. I came across this article on the BBC website a few weeks ago on January 3rd. ‘My husband’s ashes are still unscattered, but we’re doing OK’ ‘ The line ” I don’t know where we’d scatter them – everywhere feels too far away.” particularly resonated with me.
At the end of that article there was a pointer to other items the reader might be interested in. It took me straight to the article ‘After mum died, no-one talked about her for 15 years’.
Whilst the circumstances of that particular story are very different from mine and Steve’s, I read this bit and it resonated with me “There were all these photos, bits of my mum, scattered around in other people’s houses,” Iain says. “And she was still living in people’s heads – that’s what I wanted to gather up.”
Every time someone finds and gives/sends me a picture of Steve it’s an opportunity to share another story or memory. Even now I am being given more photos people forgot that they had. Taken on our wedding day, there is a photo below which came into my possession in the last few weeks. The snap is a candid one of us when we had a quiet moment on our own before going home to our Reception.
It’s lovely where it shows Steve bending down to give me a kiss. It reflects our true sizes and Steve’s protectiveness. I mention our true sizes as the professional cameraman had insisted the photos outside were staged. Making me strategically stand on the steps behind us to bring our head heights closer together. It is so sad to think that later on I would be the tall one. Our roles having been reversed, with Steve now having to physically look up at me from his wheelchair.
The above covers just a few of the things which have filled my last ten years, and been featured in amongst my 50+ blog posts.
In this current climate I don’t know if I have ten days; weeks; months or God forbid years still left in me. Will I be doing any more blog posts or projects? Who knows?
What I do know though is that if something is meant be, or not meant to be, I am sure Steve will find a way to communicate as he always seems to do. Steering me towards things; or even guiding me away from them.
At this stage, I ought to reflect more on the wedding photo I previously mentioned I recently acquired.
The photo came into my possession in late October when visiting my sister – Brenda. She had asked me to come over to help get her affairs in order where she had been told she had cancer. Going through various boxes of things we found some photos.
Sadly, Brenda got her own set of Angel Wings in the last few days. Brenda was not just my sister, she was much more than that. She was my absolute best friend from the day I was born and my rock when needing help with Steve. The times she supported me and Steve, and the times we shared together with and without Steve, would deserve a long blog post in its own right! This time last year we were reeling from the death of our brother Leslie. January is such a cruel month…
I mentioned at the start that my first blog post was called ‘I may regret this…’ That heading was used where I wondered if I was doing the right thing setting up a blog to share my story and life events with strangers.
If I don’t do any more posts, by choice or otherwise, I can confidently say I never got to the point of regretting starting this site. I hope that any reader will have come to the opinion that I never ever regretted meeting Steve. Nor will I ever forget him or exclude him from my own journey!
I will finish with a new poem for Steve at the end. Before that though, a few snaps including the wedding one Brenda recently gave me. I would have loved to put in a photo of Brenda too but I know that, being such a private person, Brenda would not have wanted that bless her.
RIP STEVE DAINTON 14/05/1961 to 27/01/2011 & BRENDA LONG 31/01/1951 to 25/01/2021
Ten years have gone but I’m still here, reflecting on our past. Ten years ago I felt it best to make that year my last. But every time I forged a plan to throw myself away, The guilt of leaving other’s lost would force me back to stay. And when the days turned into weeks and months turned into years, I grew to cherish extra time for laughter and for tears. Occurrences came thick and fast to challenge my perception, Of what would count as life or death; or true or false connection? Trying to share our precious time in giving more than needing, Filled the void that punctured me; and stopped the wound from bleeding. That ghost train I’ve been trying to board and wrote about last year, Has yet again pulled to a stop and taken someone dear. That special someone waves at me and sits down next to you, She’ll join to keep you company with other family too. Ten years on and done so much, perhaps I should feel pride, But honestly I’d rather be just ashes by your side. Whatever fate may throw at me, whatever lies in store? However long I hope you know I love and miss you more. Every day these past ten years I say I’ll never forget you! Every day these past ten years I say I’ll never regret you!
Happy Angelversary darling!
I’ve come in today to post up, and mark what would have been mine and Steve’s 32nd wedding anniversary.
Just over six months have passed since my last blog to reflect on what would have been Steve’s 59th Birthday. A lot has happened in such a short space of time.
Due to COVID19 I’ve lost the job I loved as a mental health tribunal clerk. Logistically, it is unsafe for Panels to ‘sit’ at hospitals etc. By that token, the hearings are being held by video links and people working from home do not need clerks. They are quite capable of making a cup of coffee for themselves.
I was prepared for losing my job from day one of lockdown in March 2020. “Spring” has been mooted as a return date but as I type this we are in lockdown two – the sequel (until December 2nd apparently). Even with progress on potential vaccines, Spring is now looking less and less likely for a return I dare say.
The ever changing position of COVID19 is scary to say the least so I am relieved there is no immediate need to go out to work, and I have a good excuse to stay home. I’ll miss being useful and am ashamed to say I am going down the route of getting into day-time TV.
Since Steve took up residency in heaven, self-isolation has never really been too much of a problem for me anyway. I hardly ever go out or have a social life, which I hasten to add is by choice. There are the odd medical appointments to contend with, but I am lucky not to have been lost in the NHS system so far.
Apart from carrying on with my creative de-cluttering projects, I’ve been using my time trying to organise my computer files better. Wish me luck with that one as I have so many discs; and mini discs; and memory sticks it seems like a never ending job. I don’t trust those so called programmes that you just plug in and they do an auto-sort and delete.
At least one of my projects has now reached a hiatus. That project being the murder case of Hannah Dainton. I mentioned in my last blog I hoped to bring news on when the Murder, Mystery and My Family (MMMF) episode I appeared in would be aired on television. It ended up going to air on BBC1 on Wednesday August 5th.
Despite Jeremy Dein QC’s valiant efforts to put across the defence case for Harry; Sasha Wass QC had a stronger prosecution argument. This was based on Harry’s actions prior to the drowning, and his ludicrous attempt to pass off why he was soaking wet himself by saying he had tried to drown himself upstream by coincidence. Add to that a clear attempt to try getting an alibi, and it was no surprise In the end that Judge David Radford found no evidence put before him to suggest an unsafe conviction.
Overall, I think the programme handled the subject matter okay given the constraints of time and resources. On the plus side, to me at least, the Forensic Pathologist Professor Peter Vanesiz made it clear there was no evidence he could find to suggest or confirm Hannah was physically held down under in the water by Harry until dead. It was highly feasible that, even if Harry was party to her being in the water, Hannah was still alive when Harry walked away.
Although this was not covered in the edited submissions, Ms Wass relied heavily on Harry’s not helping Hannah once she was in the water, and of leaving her, arguing it demomstrated a clear act of intent. Personally I would have thought no evidence of holding under water until dead went a long way to reaffirm manslaughter could have been more appropriate than murder but with such an old case…
The Forensic Psychiatrist Professor Rod Dubrow-Marshall was also adding a balanced view that, in this day and age, Harry would probably have been offered a psychiatric assessment. There was potential for diminished responsibility coming into the equation where Hannah’s actions and behaviour were likely to have an affect on Harry’s state of mind at the time.
It has not been lost on me that Sasha Wass represented News Group Newspapers Ltd/Wotton and successfully defended The Sun in calling Jonny Depp a ‘Wife Beater’. I personally think both Harry and Hannah were as bad as each other in some respects, and perhaps the same applied to the Jonny Depp and Amber Heard’s marriage? In any event, considering Ms Wass suceeded in taking on Jonny Depp and his legal team what chance would Harry have had?
As for my own marriage, Huntington’s disease (HD) obviously had an impact on mine and Steve’s relationship but I can safely say if anyone were to put our marriage under the microscope in Court, Steve was certainly more of a victim than I could ever claim to have been. I wasn’t a good wife on so many different levels but Steve put up with my faults; my failings and my selfishness. I was lucky to have had enough years with Steve before HD took hold to know his real character.
I’d like to think that he put up with me because he knew that for all my failings, if HD were ever to have come into play, I would be there for him in whatever capcity. I would do everything within my power, and then some, to protect him. Be it as a friend; a carer or an advocate. Considering my personality, in this day and age of throwaway, still being legally his wife for over two decades was probably as much as asurprise to him as it was to me!
Nearly ten years on, and Steve’s ashes are still here with me. Am I protecting him too much? I used the word hiatus earlier when talking about Harry and Hannah’s story. Part of the reason I wanted to go public was to put pressure on the parties redeveloping Shepton Mallet Prison to ensure the bodies of the prisoners now under tarmac were given proper burials.
In one MMMF scene I lay the flowers I took for Harry on an area of tarmac thought to be where Harry is buried. I even added some silk forget-me-nots as a nod to Victorian funeral flowers. My view was that even if Harry’s case was unable to prove anything, I wanted him to know I wouldn’t forget there were two sides to each story. And that his swift hanging was an injustice. It’s worth adding both Sasha Wass and Jeremy Dein told me they are against the return of capital punishment.
It occurs to me though, how my endeavours to get consecrated ground burials for people I never knew seems a bit rich when Steve’s ashes are not in a graveyard yet. It’s not a case of needing consecrated ground for me and Steve. We were not particularly religious. My ‘Will’ stipulates where we will be eventually buried.
Logistically I could easily lay Steve’s ashes to rest in a graveyard, or scatter them, but I genuinely feel Steve would not have wanted to be alone. At first, it was more a case of not knowing where I was going to move to so where would the ‘local’ cemetery be?
Now it is more a case of feeling Steve is happier here keeping a watch on his batshit crazy wife and the ‘cats’. Every time I look around and see items like his favourite New York print, and how spooky it was that I/we managed to rescue it (see here for more background), it makes me feel he’s still happy to be here in spirit and the ashes form of carbon.
I’m going to close on a new poem and a couple of photos. The first one is from our wedding day. The second one was taken exactly twenty years and one month later, on December 25th 2008. It was the last Christmas that Steve was able to enjoy in a relatively independant sense. Within three months he was in a wheelchair bless him.
He doesn’t have that same beaming smile sadly, but then we had been waiting for ages to get into the hotel’s restaurant for the Christmas Dinner. It was supposed to be a case of the restaurant opening at two o’clock. They were over forty-five minutes late at that stage (see the queue behind us). It made sense to wait until the doors finally opened and for the queue to go down.
What I still like about that picture is I clearly don’t care I probably shouldn’t be sitting on the arm of the adjacent sofa. People had probably thought I’d been on the Christmas Sherry from breakfast where I just looked at the funny side of it all instead of being fed up like the rest of the hotel guests and simply asked someone to take a snap of us. No thought of worrying about the staging as it were. Steve had got settled in that particular chair and sod what anybody else thought eh?
We had twenty two years of married life in the conventional sense and now share thirty two in a less conventional sense. I shall raise a glass of alcohol free Muscat and toast the occasion.
Heaven’s table thirty two, but just one ‘service’ set;
Back of queue will have to do, I’m not allowed in yet.
I’ll pour myself a glass of wine, no alcohol included;
And raise a glass towards the sky, don’t care if I’m deluded.
It’s not like I was bothered then what others thought of me;
I didn’t care if they would stare, you’re my priority!
But thinking back across the years, there’s plenty of occasions,
Perhaps I should have been reserved in certain situations?
In saying that, the thought occurs the picture that we see,
Reflects the person that I am, and why you fell for me.
My serious man, like Yin and Yan, we’re interlocked together;
A case of being half of me; duality forever.
That’s not to say there were not times my darkness broke away,
And left your lightness cast adrift while I went off to play.
Thankfully the joins weren’t torn and slotted back so true,
To form a perfect circle, and to roll again with you.
Happy Anniversary Sweetheart!
Well… Where do we start? Since my last blog posted on January 27th to mark the ninth anniversary of Steve’s taking a very long sleep, the whole world has changed!
The fact that I am posting this blog up today, to mark what would have been Steve’s 59th Birthday, suggests I have so far survived the Corona (COVID19) Virus.
Links to my previous Birthday Blogs for Steve are below:
May 2011 – I MAY REGRET THIS…
May 2012 – TOASTING & BOASTING
May 2013 – ONE DOSE OF TWEETMENT OR TWO?
May 2014 – THE SHOW MUST GO ON
May 2015 – THE FAIRNESS OF AWARENESS
May 2016 – POETRY IN EMOTION
May 2018 – SUPERSONIC FLIGHTS & HUMAN RIGHTS
May 2019 – AGAIN BEING QUOTED, WITH RESONANCE NOTED
Sad though it is to say this, there have been so many aspects of COVID19 that have actually made me grateful that Steve passed when he did in 2011; and also that my brother Leslie, who I posted about in my last blog, passed earlier this year in January.
With Steve’s advancing/late stage Huntington’s disease (HD), and Leslie having advanced Chronic Obstructive Pulmonary Disease (COPD), both would have had ‘underlying health conditions’ meaning they would have been extremely vulnerable. With the best will in the world it would have been so hard trying to care for them, whilst still trying to shield them from inadvertently catching the disease.
Steve was hospitalised for one night when he contracted the Norovirus. Apart from going in for the chest x-ray I physically stayed by his side all the time. He was scared and confused. The thought of his being taken away in an ambulance and my not being able to be with/see him again breaks my heart! Then again, I very much suspect he would have been labelled Do Not Attempt Resuscitation.
Following the government guidelines I have been at home. I told my Agency a few days before the official lock-down was announced on March 23rd that I was going to need to withdraw my availability for a while anyway. Travelling on London Transport to and from tribunals, along with being turned back when arriving on account of infections on the wards, was becoming very scary.
Add to that I have limited lung capacity on account of having untreated severe scoliosis. This means my lungs (in particular my left lung) gets rather squashed in my rib cage. Many years ago the Specialist at St Thomas’s Hospital calculated if my spine were straightened it would add at least four inches to my height where my back is so twisted. It was agreed at the time that the risks of surgery would outweigh the benefits though.
So in the end I was stuck with being four foot six inches, and being lopsided with a deformed right leg and foot. My hunched up posture makes me look even smaller no doubt. With the osteoporosis kicking in later on, it made the condition worse and more painful. Bummer! Still didn’t stop me being a hands-on carer though. Amazing how I could pick up Steve from the floor at times if he fell! Where there’s a will as they say…
I have spoken to my sister and told her SHE IS NOT to come to the flat if she does not get a response from me when calling; and she has to wait at least 24 hours before dialling emergency services. I have an ‘Advanced Decision‘ in place (which she and my doctor have a copy of) and she knows I would never forgive her if I were to wake up in a hospital bed with an even weaker respiratory system!
Being at home, alongside the real possibility of dying, has made me crack on with doing some of the things I have been wanting to sort for ages. Apart from a lot of admin, I wanted to tackle downsizing my wardrobes from three to one. I should add we are not talking my adding to the overworked bin personnel and potential fly-tipping here.
My sister came over soon after Steve died and between us we sorted a lot of Steve’s clothes for the local charity shop. Quite a few of the donated items had not even been worn so they were very grateful. That included some designer T-shirts. The designer T-shirt thing wasn’t about Steve being pretentious. It actually started when Steve worked in the offices of Selfridges in Oxford Street.
Steve worked in the Import Department as an Import Clerk. Apart from the staff discount, they would have the occasional batch of items to sell off to staff. Basically ‘seconds’ that could not go to the shop floor given everything had to be top-notch without a stitch out of place. As you can imagine that did not happen a lot and the quality was still an absolute bargain!
As time went on and HD meant Steve was losing weight, clothes wouldn’t quite hang on him properly. However, that didn’t mean we should stop indulging him by buying nice things. We continued to buy the odd designer T-shirt but only mainly at Duty Free shops and sales in shops on our travels.
I did hold back some of the items, but if I am honest I wish I had said to my sister to leave it until I felt more ready. There are so many garments I regret losing in the process. From the small section I did manage to keep, some are showing signs of the moths having got at them but I still can’t bear to part with them.
Including Steve’s items, the three wardrobes comes from my own clothing being basically split between a fold out clothes rail (what I call work wear) and a canvas wardrobe with non-work items. After discarding things that don’t even fit anymore, what’s left could easily be condensed into sharing with Steve’s few items in the main wardrobe.
Thing is… every time I aim to let something go, memories flood back if worn/purchased in mine and Steve’s time. To make the process less stressful, what I have recently been doing is throwing out one item a week but making sure I cut out the labels and a section of the material which I can then make notes on before placing in my memory box. Yes it is like a form of hoarding. The difference is it is about having control of the process now by holding back a little bit each time. I swear I would have made a great psychopathic serial killer with a ‘trophy’ box had I put my mind to it.
Like my myriad of clothes; my jewellery has been spread around in different rooms; different boxes; different drawers. Some are earrings where I only have one left having lost the other one god knows where. One of the garments I planned to wrench away was the blouse that I wore to Steve’s funeral. Rather than just let it go, I used the material on frames to gather and store jewellery on. Just a case of pushing the pieces through the material and securing from behind with the ‘butterfly’ or ‘back’ etc.
The photos below show how basic my handiwork was. Maybe I will take time to rearrange more artistically one day. What the photos don’t illustrate very well though is how sparkly and twinkly they are even in this basic formation. Much better than being hidden in the dark and never being allowed to shine again. Maybe it was some kind of subconscious metaphor for lock-down going on in my head?
The solitary earrings now include an earring from a pair I was wearing just before stopping work. Unusually I was asked to cover two hearings at the same time. With the need to dash around between wards and floors and rooms it wasn’t until too late that I realised one was no longer in my ear. I felt heartbroken as the pair had sentimental value. I have to count myself lucky though that I didn’t lose both.
I am grateful I still have one of the photos where I was wearing the set; and now it is central in my naive experimental handiwork. Placed central between the two sets of pearl drop earrings. The necklace in the photo with Steve is also now out of a box and sitting on the side sparkling and bringing a smile to my face again. I can’t really say any of the pieces have a real monetary value. In terms of sentiment though, they are priceless to me!
While we are on the subject of money; with the wrecking ball that is COVID19 dominating the News, the outcome of the case of ABC Vs St Georges was finally announced on February 28th. I have blogged about the matter on several occasions but a succinct summary of the Case, and the outcome, can be read in this post from 12 King’s Bench Walk (12KBW). The full Decision of the Judge can be read HERE.
In essence, the Judge decided against the claimant’s being awarded compensation for not being informed of her father’s HD status at a crucial time. This information being key where she was pregnant and her pregnancy was known to her father’s treating team but deliberately held from her in the interests of maintaining her father’s patient confidentiality. The claimant had argued the professionals had a ‘Duty of Care’ to her too where she was involved in family therapy. The case is very complex but the Judge broke the issues down into the key areas as outlined in the 12KBW post.
To my untrained mind though, what the 12KBW post does not reflect on much, is something that struck me as potentially what undermined the claimant’s main plea. That being, having her father’s HD status at an early enough phase would have given her time and knowledge to consider terminating her pregnancy.
Fundamentally, that she could have demonstrated a strong and determined enough mindset to have acted on such knowledge to terminate the pregnancy should she have had a positive test result. The lack of a termination option being at the centre of the whole claim.
I say this because it appears when applying the options logic to her sister, the claimant too seems to have found it too difficult to divulge such critical and devastating information. In fact, with her own knowledge, she seems to have decided to make judgement’s about her own sister’s ability to take on board and rationalise such information.
I have extracted below two particular paragraphs, underlining the sections that I found troubling when hearing/reading for the first time.
In para 20 it says:
20. The claimant’s sister was then in the early stages of her first pregnancy. The claimant informed the clinical team of her sister’s pregnancy. The claimant decided that she did not want XX’s diagnosis to be disclosed to her sister during her pregnancy. XX also maintained that the sister should not be told. On 7 October 2010, a meeting of the St George’s Clinical Ethics Committee took place, chaired by Professor Eastman, to address the question of whether the diagnosis should be disclosed to the claimant’s sister. After discussion of the issues, a vote was taken. The minutes record that the majority supported XX’s right to confidentiality and would not disclose the information. The claimant’s sister did not therefore learn of XX’s diagnosis until after her baby was born. She has since been tested and has been found not to have the genetic mutation.
The assumptions issues are highlighted in paras 111 and 112:
111. On 25 August 2010, XX spoke to one of the genetic counsellors by telephone. They discussed the accidental disclosure to the claimant. The counsellor indicated that the claimant was welcome to call her, and the claimant spoke to her later the same day. The claimant was very upset. She indicated that she wanted to discuss the implications for herself and her sister before she told her sister. She said that her sister was ten-and-a-half weeks pregnant, but her father did not know of the pregnancy.
112. The claimant was referred to the genetic clinic by the counsellor, who wrote:
“[She] would like to come and discuss with you the implications of the possible diagnosis in her father for her and her sister in case there are any prenatal testing options her sister can avail of. She wishes to discuss this with you prior to informing her sister.”The claimant spoke to the genetics counsellor again on 27 August 2010. The note of that conversation includes:
“Doesn’t feel she wants the test now and feels telling her sister now will not help her as she has always been more anxious than [the claimant].”
Whilst 12KBW highlight the outcome does not automatically slam the door shut for future cases ‘in different, perhaps more stark, circumstances’, I do feel for the claimant who needs to pay all the legal costs and cope with the ramifications on top of what was already a set of tragic circumstances on a scale of Shakespearean level! In the end, I hope her child proves to have not inherited the gene. That can only ever be the happy ending for the claimant to this I fear.
The whole episode of ABC Vs St George’s shines a light on the complications and sadness HD can bring. To be fair, a lot of other genetic diseases too. I suspect the claimant is glad the case may have not been picked up on by the wider media where they were gearing up to focus on another, more newsworthy, medical issue. That being COVID19 of course.
Indeed, my own venturing into the public gaze has been put on hold due to COVID19. The episode of Murder, Mystery and My Family featuring Harry Dainton was due to be screened on Friday May 1st. See HERE for an earlier blog entry with more detail on Harry. A potential date in June has been mooted but we shall just have to see.
I shall close with a poem for Steve and some more photos.
The photos include the one I referred to earlier regarding the solitary earring. It was taken at Park House. The T-shirt Steve is wearing looks so big on him where he has lost weight bless him. I can’t recall the label but I do know it was one of his favourites.
The other photos were taken in 2001 when we stayed in Berlin. Steve is wearing an Yves Saint Laurent T-shirt just chilling out in the hotel foyer, no doubt waiting for me to get my act together and decide how we were going to spend the day. Just to demonstrate Steve wasn’t as pretentious as I may be making out, he was also more than happy to wear his tourist T-shirt during our trip. He was always fun to travel with!
The third snap is one Steve took of me. I know it was Berlin as the TV Tower is in the background. No designer T-shirt for me. If I am honest though, that would have had more to do with being only the size of an eleven year old and with a dodgy back meaning I have sloping shoulders. Nothing hangs on me properly, designer or not. Add to that, children size clothing has its limitations as you can imagine.
Nearly twenty years later but how I wish I still had more of Steve’s collection of designer and fun T-shirts. Then again… I Still have my own top from that photo even though it is probably too small now. I still have the watch I wore; one earring and the necklace too. And I still have Steve in my heart. I am blessed with so many riches and should always be grateful for what I have, rather than sad for what I have lost or lose along the way.
With weeks going by of enforced staying in,
I busy myself, and a project begin.
An early ‘spring clean’ may be something to do,
To declutter the flat and my memories too?
Why use three rails when I only need one?
My clothes are spread out and this needs to be done.
I open your wardrobe there’s not much inside;
I cleared out the bulk too soon after you died.
Take out a hanger; blue Burberry top;
HD didn’t mean that the style had to stop.
Just one of the items that brought you such pleasure;
I wish I’d kept more now to hold and to treasure.
Start with my items and place in black bags,
Then take them back out and put scissors to tags.
I’ll just keep a small bit to use up less space;
Too hard to let go and I’ll never replace.
Look at the jewellery; feeling the same;
I pick up a gun and an old picture frame.
The gun fully loaded with staples engaged;
The cloth is pulled taut and the earrings all staged
Checking whole Items and pieces of cloth;
Designer or not, no respect from the moth.
A patchwork of memories make up this strange quilt;
Stitched with the threads spun from love; and from guilt.
Happy Birthday Sweetheart!
Nine years ago today, Steve was given his Angel Wings. On his Angelversary I have come in to commemorate Steve and post up a new poem for him. My previous Angelversary Blog can be read HERE, where you will find links to earlier blogs written on Angelversaries. It’s difficult to get my head around how nine years have come and gone.
For various reasons I am not allowed to give out too many details on social media at this stage but I can say we did make it to be included in the BBC Programme – Murder, Mystery & My Family. The episode featuring Harry Dainton is yet to be screened but I hope to be able to divulge more in my next blog.
Viewers of the programme will know the ‘relative’ often gets to see the scene of the crime and where the person who was hung is buried, or said to be buried. As part of the filming I visited Bath and Shepton Mallet. The latter is something I have been wanting to do for a long time. The former is something I have actually been dreading in some ways.
Back in 2002 Steve and I had a lovely long weekend in Bath. We stayed at The Abbey Hotel in the Royal Crescent. It wasn’t the hotel it is today, with a very posh Marco Pierre White restaurant, although it was still a posh hotel in 2002. We booked it where it was within the Best Western Hotels chain. We had a wonderful time and I knew it would be hard going back to Bath without Steve. I was certainly not going to stay overnight, or the two nights that the Production Company originally asked of me.
I mentioned the hotel chain as we would tend to book trips using the same hotel chain if we had stayed at a place and liked the accommodation and service. Before the days of the internet, it was very much a case of picking up the brochures in the lobby and browsing through their catalogue of packages and offers. A few months earlier we had been to one of their hotels in Edinburgh.
There were so many other trips to fabulous places in the UK we visited having picked up a brochure on a previous trip and just going for it. We were not spontaneous people in the sense of just packing a back-pack and heading off, I liked my comfort too much. However, we did love to book our next trip virtually on the back of the last one and always have an adventure to look forward to.
The thing we loved about that particular Chain at the time was that all the hotels would be different and very quirky, insofar as they would retain a lot of their heritage. They certainly were not like the charmless Holiday Inn type hotels. Later on, when Huntington’s disease (HD) manifested itself, the freedom to just go anywhere became less of an option. I’m so grateful though that we got to see so many places together. I’ve no inclination now to go back to those places alone.
Our last Best Western hotels adventure was when we took a trip to Jersey for our 17th wedding anniversary in 2005. We had been to Jersey several times before but this time was different. In the past we had been there in the spring/summer to coincide with birthdays. We were now talking November but I figured it would be an opportunity to go somewhere by plane for a short flight, and we already knew the Island making it easier to navigate.
We stayed at The Royal Hotel . Looking at the website for the purposes of this blog I was amused to see in 2020 their Bar photo shows they still have the quirky check/tartan carpet that Steve and I felt compelled to take photos of.
I do have bittersweet memories of that trip though when looking at the snaps. As lovely as it is to see Steve’s smile when he posed for me on the first day in the room, the two red chairs and table bring back sad memories. I recall on the last night of the trip, using a pillow for comfort on the table and pulling the chairs together, I slept on them with coats to cover me.
It wasn’t a case of us having argued. The reason I took to the chairs was I needed to get out of bed in order to get some sleep away from Steve’s flailing limbs. By November 2005 we had moved to a flat with two bedrooms. Before that, I had needed to take to sleeping on the floor in our one bedroom flat when Steve’s involuntary body movements had meant it was unsafe to share the bed.
I stress that Steve could not help it. In fact, he was only afflicted by the movements when asleep and unaware he was doing it. I cover Steve’s affliction in poem form in my book – Curse in Verse and Much More Worse. Below is a poem from my book which highlights what I understood to be Myoclonus. Steve did not experience all of the symptoms I describe but it is fair to say an array of them appeared along the way.
This poem is about the use of medical terms when referring to symptoms of the disease.
Shortly after my husband was diagnosed, we were sent a copy of a letter to his doctor which was written by his Neurologist. It contained the word ‘anhedonia’. I had to look the word up and it made sad reading as it brought it home to me that, whilst my husband was still showing signs of recognising ‘pleasure’, it could be that he would lose even that most basic form of human awareness.
Because of the complexity of the disease, the chances are that many will come across words used in the description of symptoms that are not easily recognised. The majority of the terms given below were used in connection with my husband. I personally found it useful to look into the meanings of the words to try helping me get a handle on where those making assumptions about my husband were coming from.
“It’s all Greek to me!” Is the phrase in my head,
As the words on the paper begin to be read.
Is it Greek, is it Latin? I haven’t a clue,
But it sounds quite impressive how they describe you.
So I turn on computer and search on a word;
Oh why is the spelling of these so absurd?
And then one by one, as their meanings unfold,
It’s no wonder they use them, the sadness they hold.
‘Aspiration’, tells me though happy you’re fed,
The nutrition is aiming for your lungs instead.
‘Dysphagia’, tells me the food that I give,
Is making you choke more than helping you live.
‘Dysarthria’, tells me your mouth will not say,
What you want me to do; do you want it this way?
‘Bruxism’, tells me your teeth will grind more,
And whilst you do not notice, my nerves can’t ignore.
‘Ataxia’, tells me your order is altered,
Explaining the speech and the steps, which are faltered.
‘Dystonia’, tells me I straighten in vain,
The stiff limbs contorting, contracting again.
‘Alexithymia’, tells me your feelings are dead,
Or you cannot express them as words can’t be said.
‘Anhedonia’, tells me you cannot feel pleasure,
Devoid of the feelings you once used to treasure.
‘Myoclonus’, tells me the thrashing in bed,
And the knee in my back, and the punch in the head;
It’s not that you mean it; it’s not aimed at me,
There’s a name for this symptom within your HD.
I can think back to a lovely 2002 Bath trip and have no recollection at all of any signs of HD. Just exploring the Town and doing the tourist stuff interspersed with lovely pub lunches and hotel dinners spending real quality time together. In saying that, HD was manifesting itself in Steve but more within the realms of his behaviour than overtly physical symptoms.
In 2002 when visiting Bath, I suppose I could compare Steve with being a bit like the Best Western hotels. His quirkiness being more a fundamental part of his charm and I guess I loved him even more for it at the time. Only nine years on and I had become a widow. I have to admit over time the quirkiness became less attractive. Looking back, it’s fair to say Bath was one of the last HD free holidays I can remember.
The latest Bath trip was cold and miserable in many ways, not just the weather. I’m so glad I went there with Steve in happier times as it is normally a beautiful place to visit. How do I feel about the 2019 visit for a kind of ghost hunt with a purpose? Let’s just see how the story of Harry and Hannah unfolds on screen.
Before I end this blog with a new poem for Steve, I am also sadly marking the death of another loved one. Leslie, my brother, died very recently. Sadly he was found dead in his flat.
I had spoken to Les very briefly on the Sunday evening. On Monday night I was worried he was not answering his telephone for another one of our catch-up calls. Being worried, I rang the office first thing Tuesday morning to ask how he had been when they would have seen him the day before? The staff do their weekly check on residents on Monday mornings and have my number in case of emergencies.
Apparently they did go to his flat and knock on his door on the Monday. When he didn’t answer they simply assumed he was out and put a card through his letterbox asking for him to call them by Wednesday to let them know he was okay!
Until I get the Coroner’s findings I wont know time of death. He could have been dead behind the front door (where I believe he was found) at the time they knocked. It was on the Tuesday morning, after my asking them to check where I could sense something was not right, that he was found.
I should stress the police have ruled out suspicious circumstances. Also, residents have alarm cords to summon the wardens if needing help. I can only assume Les didn’t make it to a cord. To be fair, even if Les had been given an alarm pendant he probably would not have worn it as he was in denial about his physical and mental health needs.
It could be argued he should have been in a care home, or at least been under a higher level of care. Les was obstinate about not wanting to go into a nursing home and was annoyed at even the mention of getting assessments of his health and welfare arranged. I have been told an appointment had been madw for him to go to the doctor’s surgery a few days earlier but, being four o’clock in the afternoon (too late to go out in his mind) he refused to go and said he would make his own appointment the next morning. He never did.
I have lots of fond memories of me and Steve going out with Les and Kerrie, his ex-wife. Kerrie worked in an office just like me and Steve. Les was in the building trade which was like a different planet. The three of us would gang up on Les if he tried to argue office workers had a much easier life. Les wouldn’t have lasted five minutes in the brutal world of office politics!
Les is in the background of this wedding day snap where we are attempting to cut the cake to serve before dashing off to our honeymoon. If there is a pub in Heaven, I dare say Les would have been expecting Steve to line one up for him within minutes of arriving.
RIP STEVE DAINTON 1961 – 2011 & LESLIE WALKER 1953 – 2020
Two thousand and two and we’re visiting Bath;
Indulging ourselves with a break.
Wining and dining and having a laugh;
Just one of the trips we would take.
Two thousand and five in another hotel;
Visiting Jersey instead.
Only three years but the symptoms can tell,
And I’m using the chairs as a bed.
Two thousand eleven you’re travelling again;
This time I’m stuck here at home.
Trip was to Heaven and I missed the train;
Left on the platform alone.
Two thousand nineteen and I’m still at the station;
Timetable still in my hand.
Trains that arrive show the wrong destination,
With names that I can’t understand.
Two thousand twenty and trains are arriving,
But others are taking my seat.
I’ll stand on the platform marked for ‘Those Surviving’,
Until I can board one to meet.
Happy Angelversary Sweetheart!
Tomorrow ( 25th November 2019), would have been mine and Steve’s 31st Wedding Anniversary. My 30th Wedding Anniversary blog can be seen HERE where links to previous Anniversary blogs can also be found.
Apart from commemorating Steve and providing an up-date of what has been happening since my last blog, on this occasion I am sure that Steve would approve of sharing the focus. Taking this opportunity to commemorate another very special human being – Mark Harrison. Mark collected his Angel Wings on September 7th and by his side was his sister – Jacqueline (Jackie) Harrison.
Readers of this blog will know Mark and Jackie, and their border terriers Sybil and Spike, have been interwoven throughout my blogs. Jackie and Mark’s story of being a family affected by Huntington’s disease (HD) has been humbling and inspiring to all of us in the HD Community and way beyond. Indeed, they have touched the hearts and minds of many who had previously not heard of the disease or known much about it. From Joe Public; to sports personalities; to celebrities; and even members of the Royal Family!
One such person who has been touched by the Harrison family story is the writer – Alice Peterson. Alice recently released a new book called If You Were Here. The book is set within the theme of HD and fundamentally focuses on the dilemmas of testing. I pre-ordered a copy of the paperback and I was not disappointed. The link HERE takes you to my Amazon review.
In the above linked review, I made a reference to the Case of ABC v St George’s Healthcare & Others which I have previously blogged about. As I am typing this particular section, the Case is being heard before Mrs Justice Yip in Court 15 of the Royal Courts of Justice. The Case opened on the 18th is expected to last two weeks, with closing submissions to be heard in January 2020. A link to the initial BBC coverage can be seen HERE.
On the subject of books and writing; I can’t say I have accidentally come across references to myself and Steve again in other peoples’ work as covered in my last blog. However, I was approached in July via social media by a production company working with Channel 5. They had seen the BBC article and wanted me to share our experience of being Concorde passengers in a television documentary.
The documentary was sold to me as being made for screening next year to coincide with the 20th Anniversary of the fateful Paris crash of Flight 4590 which will be in July 2020. There were parallels between our story and that of many passengers who died. Like us, they had been part of a package tour combined with a cruise.
I gave an interview to camera and the team then shot scenes of me looking at photos of myself and Steve at a kitchen table and reflecting on happier times. Understandably no guarantee of inclusion could be made but I was told they would get back to me with a screening time and programme title once known.
Sadly my piece to camera didn’t make it into the final cut. In fact, it looks like in the process of making the documentary its raison d’être shifted somewhat.
I’m also sorry to say that the final cut of the film didn’t include your interview. This was simply because of time limitations, 45’ isn’t long to tell a complicated story. It was in no way a reflection on the quality of your interview and story and I’m just sorry that we didn’t have longer to do it justice.
The timing of screening was a real surprise given it was to be only a few weeks after I had given my interview. Not July 2020 as originally planned. The final title was given as ‘Inside The Cockpit: The Concorde Crash’. On watching the documentary I can see they packed in a lot and my piece would not really have fitted in. Perhaps they were hedging their bets in case other parties dropped out?
The Production Company/Channel 5 own the interview I gave and reserve the right to use its content in other programmes. You never know… Mine and Steve’s piece may still find its way into a separate programme. Here’s hoping we are not talking ‘It’ll Be Alright on the Night’!
Still on the subject of documentaries; if you are wondering what is happening about Harry and Hannah Dainton’s story and my quest to try getting it on ‘Murder, Mystery and My Family’ (see HERE for further blogged background) all I can say is Watch This Space!
Bringing us back to Mark; there is a fantastic member of the HD Community – Allan Adams – who has been creating YouTube videos for the ‘Give a Toss for Huntington’s Disease’ and ‘Sybil On Tour’ campaigns. His latest video is an updated version of an earlier one featuring the Harrisons to reflect Mark’s passing. It can be seen HERE
In Allan’s video he uses the statement ‘He will not lose the capacity to love’. That is very clear from the photos, many of which show Mark’s affinity with animals. Not least, this one taken by Jackie.
16 April 1972 -07 Sept 2019
Not losing the capacity to love is something I recognised in Steve. He loved animals and they loved him. Indeed, anyone who knows our story or has read MY BOOK will know I went to extraordinary lengths to make sure Steve could always have a ‘cat’ in our flat to channel his sweetest of love and affection towards. Ruby and Ruby-Tuesday are still with me and also doing their bits for HD Awareness. Here’s their ‘Give a Toss for Huntington’s Disease’ video.
You can see the clear joy in Steve in this snap where his sister’s dog – Meena – has decided his lap is the most comfortable place to settle.
Another example demonstrating a connection is this set of photos taken in 2007 at the Grand Hotel in Llandudno.
- Steve is enjoying the sun on the balcony (snap 1). I go inside to get a drink and poke my head out when I hear him talking to someone.
- It wasn’t a person on another balcony, it was his new best friend and confident (Sid the Seagull – snap 2).
- Something has clearly caught their attention happening below them (snap 3).
- When I came back I rewarded Sid for keeping an eye on Steve and his therapy session with a biscuit (snap 4).
Yep, there are signs telling guests ‘DO NOT FEED THE SEAGULLS’ but Sid had earned his meal. He hadn’t simply taken a biscuit off the plate on the table and flown off. Sid had given Steve his company and both of us a smile. Okay, I confess I didn’t check if Sid was male or female, and I know technically Sid was a bird as opposed to an animal but you are going to have to indulge me on that one.
I am going to end on a new poem for Steve and also a link to a rather long slide show (just over 8 minutes) which I created for our twenty-sixth Anniversary. I can’t believe five years have passed since it was made. Time seems to have stood still in so many ways.
Another Angel joins you walking through the Pearly Gate;
No doubt a walk of confidence, with posture tall and straight.
The Huntington’s now left below, relieved of stress and pain;
In Heaven it’s a better place and all are whole again.
But the distance between here and there is not so far away,
And I know that you pop back and forth to help me every day.
Within this flat it feels as though you’re sitting here with me;
Still communicating as we read, and watch TV.
Reading stories of HD in forms of fact and fiction;
Reminders of the secrecy, and tales of family friction.
I’m grateful you were thoughtful and you didn’t hesitate,
To tell me of the HD risk and what could be your fate.
The choice to not have children was therefore ours to make;
I don’t regret the personal choice and steps I had to take.
Perhaps the lack of children and lost channel for affection,
Was somehow felt by animals to make a real connection?
Now thirty-one years and counting… 26 Anniversary Video
Happy Anniversary Sweetheart!
PS Make sure Mark gets a glass of bubbly; Sybil and Meena get some treats and ‘Sid’ or Siderina gets a biscuit!
Today we celebrate Steve’s 58th birthday. I’m here, and Steve is still here too in his own way.
The conventional celebrations are somewhat hampered on account of Steve not being here in the flesh and blood form of carbon. He is physically now a more static form of carbon (ashes) but certainly here in spirit as far as I am concerned. Not an alcoholic spirit I hasten to add, but a very kind and awesome spirit. In the same manner as he was a very kind and awesome living and breathing human being.
As ever, I wanted to come in and celebrate Steve by marking the occasion with a birthday blog. Previous birthday blogs can be read here:
May 2011 – I MAY REGRET THIS…
May 2012 – TOASTING & BOASTING
May 2013 – ONE DOSE OF TWEETMENT OR TWO?
May 2014 – THE SHOW MUST GO ON
May 2015 – THE FAIRNESS OF AWARENESS
May 2016 – POETRY IN EMOTION
May 2018 – SUPERSONIC FLIGHTS & HUMAN RIGHTS
My last birthday blog (see above link for May 2018 – SUPERSONIC FLIGHTS & HUMAN RIGHTS) talks about an amazing find where I chanced upon seeing a BBC on-line article which featured me and Steve. They quoted from a piece I had submitted to a Concorde Membership website. I had not been aware they were using my story so it was sheer luck that I saw it that day.
A few months ago I was doing an internet search on something else and, once again, I happened upon a link to a website which threw up something wonderful. It was a link to pages in a new book about Concorde.
Much like the BBC article, to my utter surprise I found myself reading mine and Steve’s names on the screen in front of me. Regular readers of my blog will, by now, know I like to think it was not just a case of being luck or a fluke. Instead, it being more a case of Steve communicating/intervening.
The book in question is called ‘LAST DAYS OF THE CONCORDE The Crash of Flight 4590 and the End of Supersonic Passenger Travel’. Its author – Samme Chittum – works at Smithsonian Books. In her book, Samme has cited the BBC article and pulled out my particular entry for her chapter – ‘Final Farewells’. See the slideshow below for the entry, alongside mine and Steve’s names being given in the Index and source material.
I felt honoured but also, If am am honest, there was a little bit of me that got a bit annoyed. Once again I had to come across my own words by accident. For courtesy sake, if nothing else, the BBC and Samme should have made efforts to ask permission first. That said, once something is out there on the World-Wide-Web it takes on a life of its own.
To be fair, I am happy for people to use my words and our story as long as they use them in such a way as to raise awareness of Huntington’s disease (HD). Both the BBC and Samme left in the Huntington’s reference. I am very pleased they picked up upon the poignancy and retained integrity to that end.
Flight 4590 was the flight which crashed on its take off from Paris in July 2000. It was not the last flight ever made by Concorde but in a market where luxury travel was already struggling to be profitable, questions over its safety now led to its rapid demise. A very deep and personal tragedy for those on board and their loved ones; a tragedy for the industry; and also a tragedy for the people of Paris. Devastated no doubt that such an accident happened, and that such an iconic symbol of aviation was effectively lost on their watch.
Like many people, Steve and I saw the 2000 news footage on television that day. First of all our hearts broke for the people who lost their lives. It was obvious no one could have survived and lives could also have been lost in the hotel she crashed into. Sadly it was confirmed that the crash resulted in the loss of 113 lives. As this news article writes, some who died were, like us when we flew, flying to celebrate a special event having saved for many years.
There was a secondary emotion on that day too. Our hearts sunk for the loss of such plane knowing it could surely mark the end of Concorde’s reputation. She was beautiful and elegant. She was special. We could never have imagined that our own names and story would be linked to that very event in a book some eighteen years later.
Thousands of people have travelled on Concorde. There have no doubt been many people writing about experiences of flying on her or even just seeing her fly by. It is emotionally humbling to think we have been selected to represent a couple’s own human story in the history of Concorde.
Forward fast to April 15th 2019 and that sinking feeling was experienced again when watching one of the most symbolic icons of Paris go up in flames. The Notre-Dame Cathedral.
Notre-Dame will be rebuilt with time. Whether it will be reincarnated as a modern phoenix or sympathetically restored to reflect its past more than its future, the Notre-Dame, as it stood on the banks of the River Seine in 1988, will always have a place deep in my heart. Beautiful; strong; and comforting even to those like me who are not religiously inclined.
I posted in my blog WARNING SIGNS & TUBE-TRAIN LINES how we officially got engaged in Paris during a romantic trip booked especially for the occasion. I have very few photos left of that trip, and sadly none with Steve in. However, I do have a photo taken in fun. I am leaning on a rather glorious lamppost in the gardens of Hotel de Ville. In the background you can just about make out the famous spire that came unceremoniously crashing down in the blaze. Paris will always have a place in mine and Steve’s heart alongside Concorde.
We visited Paris only once again after the engagement trip. There were so many other places to visit. As time went by though, and Steve was getting less able to travel, we would sometimes take the Eurostar to places like Brussels and Lille. It was relatively easy to get from home to Waterloo Station where the train originally left from.
By staying in hotels very near the destination stations we could stay for just a couple of nights with minimum fuss and luggage and still feel ‘normal’. Paris was also easy by train but the relaxed pace of Lille, in particular, suited us.
Our last such trip was in July 2005. We had booked for a couple of nights to stay in Hotel Ibis in Lille Town Centre. The relatively easy travelling was somewhat marred where our departure journey was July 8th 2005.
As you can imagine, being within 24 hours of the London bombings there were many issues of security on a practical level, and fear on a psychological level, to deal with. We opted to put our fears aside and do the British thing of not letting the terrorists defeat us.
I am so very, VERY glad we still took the trip. We had a lovely time and I still have a few photos, some of which are below. One is Steve standing in the Town Centre which was taken by me. Another is one Steve took of me. I took the last photo nearby where we were staying. Probably on our way back to the hotel after a lovely day but Steve is now beginning look tired bless him.
Unlike the earlier photo, Steve is leaning to one side with his gait recognisable. He is obviously telling me something. Most likely telling me to hurry up so that we can get back to the hotel for a cuppa.
He had a point. whereas Steve was more a natural photographer, it had probably taken me ages to get the name of the shop and street in the frame. All in all though we were not letting Huntington’s beat us. Still enjoying life to the full. As you can imagine, I miss travelling with Steve terribly!
Today we will be watching Queen DVDs and eating Belgian Chocolates. I no longer travel as it is not the same without Steve. I managed to find Canary Wharf have a branch of Godiva so have bought a large ballotin replicating the kind on indulgences we would have treated ourselves to when travelling to France and Belgium. I will help Steve with his share of course 😉
I will close the post with a new poem for Steve, but first an up-date on Harry Dainton (my post GIRL WITH A PEARL HEARING refers). There has been one development (excuse the pun). I had a tip off that a few days ago a Public Notice went up where the Plans have been re-submitted. I hope to add my two-penneth worth to try getting some consideration given to the fate of Harry and the others but we shall see.
As for ABC vs St Georges’ (initially highlighted in my post WARNING SIGNS & TUBE-TRAIN LINES), as far as I know the Case is still expected to go to trial in 2019. However, there has been no news of progress, be it a trial date or an out of court settlement.
It is a tad frustrating that in my job I do occasionally work at the hospital at the centre of the Case. I even deal with the Consultant at the centre of it (the one who accidentally gave the Huntington’s diagnosis away). However, it would be unprofessional to make direct enquiries with the parties themselves so I have to keep schtum. Somehow I don’t think the Trust or Consultant are likely to be subscribers to this blog. Then again, who knows where my writings will end up being reproduced next eh?
Another occasion when took by surprise,
As our names appear sharply in front of my eyes.
Sure enough Sweetheart, as I read on,
Our names again linked with such an icon.
Clearly our story has resonance where,
Others who read it feel they want to share.
It’s wonderful knowing that after we’re dead,
It’s not only here that our story is read.
In here I share memories; photos shared too,
As I focus on good times that I spent with you.
From the fountains in Paris, near Hotel de Ville;
To a peaceful Town Square in the Centre of Lille.
I do see the tiredness that HD could bring;
I see more than that though, you were not giving in!
It may not be Belgium were we spend today,
But we’ll still celebrate in our own special way.
Happy Birthday Sweetheart!
Today marks eight years since Steve was given his Angel Wings. On his Angelversary I have come in to give a brief update on things, and post up a new poem for Steve.
Previous Angelversary posts can be seen here:
January 2012 – Moving Pictures
January 2013 – Ring a Ring o’ Roses
January 2014 – Inspiration not Frustration
January 2015 – Reaching for the Teaching
January 2016 – Coincidence or Sixth Sense?
January 2017– Procrastinating over the Celebrating.
In my previous blog I wrote about my quest to try getting more information on the case of Harry and Hannah Dainton. As yet, nothing further has been found in respect of possibly being able to challenge the legality of Harry’s death sentence. It was always a long shot given the age of the case but still worth trying I feel.
There has been some news though regarding the Shepton Mallet Prison redevelopment and the position on the burials. Whilst it does not confirm Harry’s presence still being exactly where he was buried, a statement from the Archaeologists does provide a reassurance of sorts. It says:
The burials are in an area of tarmacked ground. The burials themselves were not exposed by our previous archaeological evaluation. The trench was excavated deep enough only to confirm the presence of grave cuts in this area; it was not excavated deep enough to expose bones/coffins. At the close of the evaluation, the trench was backfilled with the material which had been displaced from the trench, and it was re-tarmacked. The burials have not been disturbed since the evaluation, and remain sealed underneath a layer of modern made ground and modern tarmac.
There is as yet no programme for starting further groundworks at Shepton Mallet prison. The burials will remain in situ unless they are to be disturbed as part of the development, in which case a methodology has already been agreed with ourselves (Cotswold Archaeology), City & Country, Mendip District Council and the South West Heritage Trust for the removal of the burials under archaeological conditions. This process would end with the reburial of the remains at a suitable site – possibly the cemetery at Waterloo Road, Shepton Mallet, although this is TBC.
This indicates the prisoners have not been disturbed by the recent work on site; and that they will be left alone for a while at least. What it cannot answer, however, is whether all the bodies remain there. The fact that something must have happened in a previous redevelopment needing for their area of ground to be tarmacked over in the first place could signify an earlier developer might not have acted so responsibly.
I haven’t sorted out a date, but at some stage I feel I ought to make a visit to Shepton Mallet Prison before the redevelopment. I would like to think the relevant parties would invite me and others to any reburial but we shall have to wait and see.
Whatever the case, I need to revisit the site plans and try getting my head around where exactly the tarmacked ground over Harry is likely to be. I want to be someone going to say a few words to/over Harry, rather than just a tourist with morbid curiosity.
Regarding the case of ABC vs St George’s Healthcare, I noticed a few blogs have been mentioning they expect it to go to court in 2019. One such blog can be seen HERE.
If, as expected, the case goes to trial in 2019, the court will have to decide whether Jane was owed a “duty of care” by her father’s doctors even though she had never been their patient or at any of the facilities at which her father was treated. More broadly, the court will ask if the genetically inheritable characteristic of a condition like Huntington’s disease means that a parent’s confidential diagnosis belongs to their children as well. With further advances in genetic testing, claims to a relative’s genetic information may become increasingly difficult to deny. As one scholar has put it, it will be more common for the relative of a patient to demand access to the patient’s record by declaring – with more than a hint of truth – “I have a claim, because it is about me.”
Truly one to watch as it could have such game-changing ramifications. That said, the slow way in which the world turns when it comes to enforcing changes in policy, and thereafter transferring that into practice, makes me wonder if a cure for Huntington’s would come into place quicker?
On another matter linked to policy and changes; I have previously blogged about insurance under Supersonic Flights & Human Rights . There has been a bit of a development. Sadly though, it is not what I would call real progress. If anything, I take it more as a step back rather than forward.
There was real hope that the UK Huntington’s disease and other genetic conditions organisations would be able to work with the insurance sector, supported by the government, to think again about the way they discriminate against people.
In October 2018 the Huntington’s Disease Association (HDA) announced on their website ‘New code on genetic testing and insurance launches‘. When looking at the Code and at the Guide for Consumers I was dismayed to see it was simply more of the same.
Firstly; it is still a voluntary thing, therefore not all companies have to abide by the Code. Secondly; even if companies do sign up to the Code they are still legally allowed to discriminate against those with Huntington’s.
If you are applying for insurance from a company who has signed up to the Code, they agree to act according to its rules. This means that the company has committed to the following:
• To never require or pressure you to have a predictive or diagnostic genetic test, under any circumstances
• To not ask for, or take into account the result of a predictive genetic test if you are
applying for insurance with the only exception being if you are applying for life
insurance over £500,000 and you have had a predictive genetic test for Huntington’s
Disease. Only in this circumstance do you need to tell the insurance company the
result of the test, if they ask
Below is a list of the only condition(s) for which insurers may request disclosure of
predictive genetic test results in accordance with the financial limits set out in
• Huntington’s disease, for life insurance coverage totalling above £500,000 per
Source: Code on Genetic Testing and Insurance A voluntary code of practice agreed between HM Government and the Association of British Insurers on the role of genetic testing in insurance October 2018
Re’ the above quoted extract, please note if you have not opened up the link to see the full document I have not cut the Appendix 1 quote short. It really does just list one condition in it. If that isn’t discrimination in all it’s true blatancy then I don’t know what is!
Incensed by seeing what I would call a lost opportunity I asked the HDA why there had been nothing really done. They gave me what I would call the rather beige reply of:
The HDA and SHA have written a joint letter to the Equalities Commission to urge them to pick up Huntington’s disease being the only condition listed. We have obtained a place on the DWP ‘Disability Champion Access to Insurance’ working group to continue to raise this and are attending the next ABI genetics working group. So this is work in progress and we have a listening ear at last.
I say beige reply as I couldn’t understand why they were not doing more to ask the HD Community to add weight to the cause? I could be wrong of course. I would love to find no end of HDA Members have been approached directly, or asked for input via newsletters; Branch discussions and social media pushes etc. Do feel free to correct me but sadly I suspect there has been no real engagement.
Thankfully, the Scottish Huntington’s Association (SHA) appear to bee more engaged with the needs of their Members. When getting their SHAre Newsletter I read they were highlighting a Petition had been set up by their Chief Executive – John Eden. The Petition can be signed HERE. I have to confess I am disappointed the number of signatures is tiny as at time of my post ( under 220) but maybe a push by people who care about discrimination in general will help.
As the SHA say in their Newsletter
What is really needed now is for families affected by HD to tell their stories of trying to access protection insurance and to get behind a new petition to make their voices heard
So, how will I be spending Steve’s Angelversary?
When publishing my blog posts, if I have not already done a blitz on Facebook and Twitter beforehand, I usually spend a good chunk of the day getting my blog out there to people. Apart from WordPress Followers of this blog, of which I am truly grateful to you guys, not that many people bother to read or respond. Nevertheless, I still feel the need to share and commemorate Steve, who still inspires me and hopefully inspires others.
This year tough I will not be engaging with social media. It is not because I have given up, and certainly not because I don’t want to share mine and Steve’s story any more. Neither is it because I am not keen to use it as a platform to keep the HD Community up to date on subjects such as ABC vs St George’s Healthcare. It is because I took a decision at the end of last year to go cold turkey on social media for January.
I don’t drink; don’t smoke; have no social life to cut down on as it were. If I went on a diet I suspect my colleagues would be looking up Eating Disorder Clinics as I am apparently underweight for my size. That said, my colleagues only get sight of my very skinny wrists and bony neckline. They don’t see my spare tyre around my waist thank god!
Once I have pinged this blog on WordPress, and maybe put a link to it on the HDA Message Board for friends who will be thinking of me and Steve, I will watch a Queen video or two (the band, not HRH) and gear myself up for the big event of the day.
I couldn’t face going to the cinema to watch Bohemian Rhapsody without Steve by my side. I have pre-ordered the DVD on Amazon but it is not likely to be sent until March. I have plenty of others to watch with him in spirit though.
As for the big event I refer to…
In my blog ON THE WINGS OF AN EAGLE & DOVE; CARRIES FAITH, HOPE, & LOVE, written for what would have been Steve’s 56th birthday, I highlighted how I (for that read we) would be watching Crystal Palace Football Club on the television. They were playing a very important match. One that could decide their fate as to whether they stay in the Premier League or get relegated. They stayed up I am pleased to report.
Later today, Palace will be on BT Sport2 playing Tottenham Hotspur Football Club in the third round of the FA Cup. It is particularly poignant as Tottenham are effectively Steve’s second team. His dad was a fan having been brought up in the Tottenham area before marrying and moving to Beckenham. My blog Playing for Laughs touched on this.
The game will have finished by 20:20 hours which is approximately the time Steve drew his last breath. Eight years on but I still like to mark the time in silence. It is always the anniversaries and special occasions that have the toughest gradients in the pathway of grief.
Whether anyone else gets to see and read this blog it doesn’t really matter. What does matter is that I have done it. To help myself, and for Steve to know wherever he is that he is remembered by me.
As I often do, I have ended with a picture and a poem. Actually, we are talking a couple of pictures. Both taken on holidays in Jersey. One from 1991 and the other from 1996. We visited Jersey a few times, initially sparked by our love of the programme Bergerac. Maybe my obsession to play detective and investigate thing comes from mine and Steve’s love of true crime programmes, and of fictional detectives like Bergerac? That said, I am more Caramac than Bergerac.
Although I could never give up chocolate, I would like to think Steve is proud of me for giving up the booze; for not losing my tenacity to find answers and get stuff done; and, of course, for never giving up on him!
Eight whole years have come to pass and still I think of you;
With no regret, my sights now set, on what is left to do.
The first few years brought pain and guilt; trying to find a reason,
To why I still woke up each day; each week; each month; each season.
Another anniversary and only time will tell,
if time was simply wasted or was time that’s been spent well.
And days I fill with searching for that extra information,
To help to form some clarity where needing explanation.
A fool with too much time on hands, I’m sure that’s how I seem;
We can’t take on the world my love, but surely we can dream?
The Dainton hung; the daughter lied to; clear discrimination;
It’s not like any one of these impact our situation.
There’s plenty people out there who can impact if they care,
So does it really matter if this input leads nowhere?
That’s not the point though is it, the point is One shared Vision;
As long as I feel you’re with me, I know we’re on a mission.
Perhaps I could add one more link which I know Steve will appreciate:
Happy Angelversary Sweetheart XXX
Today would have been mine and Steve’s ‘Pearl’ Wedding Anniversary. Thirty years ago today we tied the knot and although the ends have been pulled apart, as readers know by now, I still like to come in here and mark the day. My previous anniversary posts can be seen here:
2012 SELF INDULGENCE
In my previous blog I touched on a little project I had taken up. I wanted to look into the case of Alfred Henry ‘Harry’ Dainton. I can’t recall exactly when I heard mention of a murder and murderer in the Dainton family. Reassuringly though, it was also mentioned that the events happened a long, long time ago. In 1891, Harry was convicted of murdering his wife – Hannah – by drowning her in the River Avon. With the advent of the internet I had always planned to do a bit of research into their story when I had the time.
When meeting some of Steve’s family in October 2017 at his cousin’s funeral (as mentioned in my blog HERE) I discovered Steve’s uncle had also shown an interest in finding out more about Harry. He had even spent a day at the National Archives in Kew to see what they had on the case. At least I knew then that I was not the only one who was curious.
To find out more for myself, I ordered the Trial Notes Case File from Kew. As requested, the File arrived in the form of 52 JPEGs. You can see one of the JPEGs, along with the text of a rather long press cutting submitted as part of the Case File (re-typed verbatim by me), in Claire Sully’s blog HERE and HERE.
When, in my last blog I used the word ‘spooky’, it was not so much to do with ghosts – although Shepton Mallet is said to be ‘ Britain’s most haunted prison’. The spooky aspect was more to do with the timing of my getting my butt into gear and properly going on-line etc.
Harry was buried in December 1891 in unconsecrated ground within the Prison walls. It was reasonable to assume he had lain undisturbed for over 100 years, and that he would be undisturbed for many, many more years. As I started looking into the matter I was surprised to find Shepton Mallet Prison had been bought by a property developer with plans to make the site into luxury flats. City & Country (C&C), bought Shepton along with several other prisons sold off by Ministry of Justice a few years ago. My timing, however, coincided with things stepping up a bit.
As things stand, I am waiting to hear back from C&C and/or the archaeologists – Cotswold Archaeology, on what will happen to Harry and the other six prisoners who are buried there. Other local issues apply which are halting C&C’s progress but I believe discovering real evidence that prisoner’s bodies are still likely to be there (see Cotswold’s Report HERE) will have put a spanner in the works where C&C have legal obligations not to erect buildings over human remains.
The Cotswold Report only names and dates burials of two prisoners – ‘William Bignal on 24th February 1925 and John Lincoln on 2nd March 1926’. That does not mean Harry and others are proven as having been removed, or developed over in one of the previous gaol developments when consideration for human remains was less regulated.
Harry and the others are, I believe, still likely be there. I hope however, because they were buried over 100 years ago, that they are not effectively written off as collateral damage! Taking a look at the 1922 Home Office diagram we can see that it would be hard not to disturb the other graves where they are in such close proximity to each other.
The legal obligations were in place anyway but I think the developers would have been surprised to hear from someone called Dainton asking questions about what their plans were at such a critical time. In fact, it was only when I asked certain questions by way of using a Freedom of Information (FOI) request addressed to Ministry of Justice that I was able to get a response confirming C&C would have been aware of bodies needing their consideration. Up until that point I was being answered along the lines of with “if we find any bodies”.
The FOI response did helpfully provide the 1922 map and list of exactly where the individual prisoners potentially lay (see above photos) which they stated was provided in the tender pack to all bidders. I am afraid C&Cs’ being somewhat circumspect about answering my initial enquiries does nothing to help me feel confident they are affording the bodies the priority they deserve.
I hope I am proved wrong but I am aware C&C have been criticised in other quarters for their handling of other projects. Dorchester Prison has had longstanding issues surrounding the treatment of its own prisoner burials.
Going back to the case of Harry and Hannah, when I had been looking up references to get information before searching in earnest, there were a couple of things that struck me and sent warning signals. Did Harry or Hannah possibly have Huntington’s disease (HD)?
In Harry’s evidence he said Hannah had ‘threatened to do away with herself’. In other evidence he accounted for having wet clothes as having tried to commit suicide ‘he had jumped into the river as he had wanted to do away with himself’. This had been picked up on in websites briefly mentioning the story. With suicide being so prevalent in cases of HD it did make me wonder.
Add to that the case I have been following known as ABC V St George’s, where a husband who had undiagnosed HD killed his wife, I wanted to see if there were any signs that HD could have been at play in Harry and Hannah’s sad tale.
After satisfying myself as far as I could HD was very unlikely to have been a factor in their story, this being based on the information I had including the trial evidence and newspaper reports from before; during; and after the trial (and trust me on this, I have scrutinised hundreds of on-line reports looking for clues), I made more of an effort to make contact with living relatives to highlight the sale of Shepton. I also needed to satisfy myself Steve’s own Dainton branch blood-line was far removed from Harry’s. Bad enough being told of/reminded there was a murderer in the family, let alone there could have been a genetic hiccup like HD involved.
With the help of other Daintons who have also been looking into the genealogy of the couple’s bloodline, I was able to trace descendants of one of Harry’s brothers. Harry and Hannah did have several children who were made orphans.
One of the children was blind. Elizabeth’s story hit me quite hard where in other family site references it had been assumed she was well looked after in a school for the blind. During my on-line newspaper searches, I uncovered she was only able to stay there a short while and was sent to the Workhouse. On further investigation, she died in the Bath Union Workhouse within three years of being made an orphan. God knows what sort of existence she must have had bless her.
Many of the others were sent to Canada from Dr Barnardo’s under what is referred to as British Home Children. It has therefore been more complicated trying to trace existing linear family. Initially I was trying to find relatives who might want to help support the need for Harry’s remains to be respected by C&C etc. More weight would obviously apply if living blood relatives took an interest.
The tracing of relatives also, again spookily, coincided with another area of my taking up Harry and Hannah’s story. By chance, I saw an advert in a TV magazine saying Chalkboard Television Production Company was looking for historic crimes where there may have been a miscarriage of justice. More details on the BBC Programme Murder, Mystery and My Family can be seen HERE. If taking forward stories, Chalkboard do need to make efforts to find living relatives/descendants and my efforts thus far would help.
From what I had read of the case, I thought there could be consideration given to whether Harry was wrongly hung. I would need to do a whole blog on what leads me to that conclusion but several areas worried me. Not least, even if Harry were proven to have been involved, should he have been found guilty of manslaughter as opposed to murder which carried a lesser sentence and not the death penalty?
Chalkboard have spent months looking for more evidence to help research the case further but have been hampered by the lack of existing documentation given we are talking over 100 years ago. The story cannot therefore be taken forward at this stage but they do feel it is an interesting case. They have said they will get back to me should anything come to light which might raise a strong legal argument either for or against Harry’s conviction being unsafe. The programme makers are always keen to ensure those taking part bear in mind that what they uncover can lead to more evidence against innocence than for.
Harry never confessed to the crime but, given the circumstantial evidence, it is hard to see that he would not have been involved in some way even if it were unintentional death. Maybe he went too far in trying to teach Hannah a lesson where at the end of his tether? Several times on the day of the drowning Harry would say to people comments along the lines of “If I keep In the same mind as I am now she shant walk about as she is now”. Harry’s actions on the day, and his bizarre actions in trying to cover his tracks afterwards, did not help his case either.
I should point out Harry had a record of being a violent man. He had only been out of gaol a few days prior to the drowning having served seven days for a previous assault on Hannah, and on condition of being bound over to keep the peace for three months. That said, Hannah herself was no saint and had been in brushes with the law for assault.
Alcohol consumption, on both sides, clearly played a part in their turbulent marriage. Harry wrote letters in his last days pleading with his siblings to ‘give up the drink’. The Temperance Society even used Harry and Hannah’s story as an example to further their cause of the evils of alcohol. Apart from making peace with his family, in his last days Harry showed signs of remorse. It was taken as a form of confession when he was reported to have told the Prison Chaplain ‘he admitted the justice of his sentence and he would confess all he had to God himself, and not to anybody on earth.’
It is shocking how quickly things moved on from the time of the drowning to the execution. The drowning took place on Tuesday 8th September 1891. Harry’s sentence was given at the trial heard before the Assizes on Tuesday 24th November 1891. Prior to that there had been a Coroner’s Inquest which took place Friday 11th and Monday 14th September; followed by a City Police Court hearing on 17th and 18th September.
Although Harry was called to give evidence previously, from what I gather Harry was not called to give evidence before the Assizes on November 24th. Certainly there are no references to the ‘Prisoner’ giving evidence in the Judge’s (Justice Sir Lewis William Cave’s) own Court Notes apart from one line on page 24 of 26 pages ‘Prisoner’s Statement put in’. It is not clear if that was a submission from Harry or his Defence Barrister.
The Jury took just twelve minutes to find Harry guilty!
According to the Shepton Mallet Journal dated 27th November 1891, Harry made no answer when the Clerk of the Assize informed him that he stood convicted of the crime of murder, and asked him if he had anything to say why judgement of death should not be passed upon him according to law? The article then goes on to say that after the Judge placed on the black cap, and proceeded to pass the death sentence, only then did Harry respond. ‘The prisoner when being taken away by the warders, turned round to the Judge, and said: I didn’t do it. I was at the bottom of Westgate Street when the clock struck half-past ten.’ The Judge replied with ‘It is no good adding this falsehood to your crime.’
I don’t think the Jury actually thought the sentence of hanging would be carried through. In fact, as the Judge’s notes confirms, the Jury asked for a ‘recommendation to mercy on the ground of the aggravating conduct of his wife.’
Several petitions were sent to the then Home Secretary – Sir Henry Matthews – to plea for mercy. The Sheriff of Somerset, who had sat through the trial, even travelled to London to request an audience with the Home Secretary to ask for the sentence to be commuted. All was to no avail. On Tuesday 15th December 1891, just ninety nine days after Hannah’s life was cut short, Harry was taken to the gallows and executed. Harry is said to have expressed that he hoped to be reunited with Hannah in Heaven.
Whatever the circumstances and facts of the case, I am glad that we no longer subscribe to capital punishment. In my work as a Mental Health Tribunal Clerk I sometimes sit in on hearings for ‘Restricted‘ patients. Some of those patients may well have been sentenced to capital punishment if still in force and their mental illness not uncovered in time.
Who knows what would have happened to the Patient in ABC vs St George’s had such swift ‘justice’ been dished out? And who knows if Harry himself was suffering from an undiagnosed mental illness that would have, I’d like to think, been picked up on in this day and age?
Having established HD was unlikely to have filtered through to Steve from Harry or Hannah’s gene pool, I started tracing back along Steve’s own blood line. I could be totally wrong here but I think HD may have entered via his Great, Great Grandmother who was not a Dainton by birth but, like me, had married into the family. She died in 1892 aged 56.
The death certificate gives the cause of death as Phthisis Chronic and Acute Bronchitis. The Medical Definition of phthisis is ‘ a progressively wasting or consumptive condition.’ Steve’s Great, Great Grandfather lived to be 86 which probably would have been too good an age to die with HD in those days. Many of their children died relatively young, including Steve’s Great Grandfather.
George Huntington, whom the disease is named after, identified a form of genetic illness in his 1872 paper ‘On Chorea’. It would take many, many years for HD to get to the stage of being a disease recognisable through symptoms. Some, myself included, would say we are still not there yet.
Since my last blog I have been a tad busy and there is still so much more to look into. I am still here with Steve’s ashes and his subtle and not so subtle ways of guiding me to things. Who knows what else may be uncovered?
I said at the beginning of this blog (apologies for the length but you know me by now) that I couldn’t recall exactly when I heard mention of a murder and murderer in the Dainton family. Thinking about it more, and looking at Steve’s own direct linear, I probably heard in a roundabout way on 21st August 1987. That was the date I went out with Steve on our first proper evening ‘date’ and he mentioned his father had Huntington’s. A disease such as HD had murdered generations of his family with no mercy. I witnessed Steve’s bravery even up until his final moments. I can certainly say Steve was innocent. He did nothing to deserve the death sentence that HD can bring.
I hope that Harry got to be reunited in Heaven with Hannah. For all his faults I am convinced that Hannah would not have wanted Harry’s life to end on the gallows. If not in Heaven, maybe helping to get Harry reburied on consecrated ground if possible is part of helping him on his journey back to Hannah.
In my Will I have instructed that my own ashes be laid to rest next to Steve’s. We had Eltham Cemetery stipulated. Now though I rather fancy the idea of looking into going somewhere like this – Eden Valley Woodland Burial Ground. Resting under bluebells seems rather attractive.
Steve does already have a memorial tree by way of a sapling I sponsored in Hundred Acre Wood planted through Woodland Friends. It is planted in a lovely peaceful place and I went to see the the sapling not long after planting. I don’t think they have branched out yet (excuse the pun) into the woodland burial sector.
Thirty years ago today I had no idea getting married to Steve would take me on such an amazing journey. Whether I live another thirty days or thirty years who knows what next strange path I will be walking through. Or what I may be treading over.
I shall end with a new poem, along with a photo taken thirty years ago.
The family tree of you and me stops dead upon the chart;
No roots extending further down where children take no part.
We both decided long ago our genes be not extended;
And so it is when I am gone our family will be ended.
But maybe one day years from now a child will stop to view,
A wooded bloom of bluebells that emerged from me and you.
Not rotting leaves and detritus in shaded canopy,
But sun and flowers and rainbow showers which wash you more to me.
Happy Pearl Anniversary Sweetheart. xxxxx
Today (14th May 2018) would have been Steve’s 57th birthday. As ever, I have come in to mark the day with a new blog entry and poem.
My previous birthday blogs can be seen here:
May 2011 – I MAY REGRET THIS…
May 2012 – TOASTING & BOASTING
May 2013 – ONE DOSE OF TWEETMENT OR TWO?
May 2014 – THE SHOW MUST GO ON
May 2015 – THE FAIRNESS OF AWARENESS
May 2016 – POETRY IN EMOTION
Twenty years ago today, Steve and I were celebrating his 37th birthday on-board The Oriana Cruise Ship. We were actually docked in Barcelona on his birthday and we had spent the day with fellow passengers on a shore excursion. We visited the Town Centre taking in the sites such as Gaudi’s Cathedral and Spanish village. That evening at dinner, as they do on cruises, the restaurant made a fuss of all those with birthdays. It was a fabulous day and night!
Barcelona was the mid-trip stop. The cruise had already taken us to St Tropez. After Barcelona we arrived in Florence. We had seen many pictures of the buildings in Florence but none of them had prepared us for just how stunningly beautiful the architecture was in real life.
Unlike in London, where pollution takes its toll on many historic buildings, strict transport bans in the Centre of Florence meant the beautiful coloured marble of buildings like The Duomo Cathedral and the magnificent bronze relief doors of The Baptistery were truly a sight to behold!
After an all too brief tour of Florence, our party took a coach ride to Pisa. We didn’t actually have time to get off the coach and walk around Pisa itself. Photos of the famous Leaning Tower were taken through the coach window, so sadly we didn’t get to do the obligatory photo of one of us trying to lean too so as to make it look straight. We had been delayed leaving Florence and were now in a rush to catch a plane back to London.
At the start of our holiday we had arrived to board The Oriana in style. From London Victoria Station we took The Orient Express to Southampton enjoying a champagne lunch. As part of the package, we would be returning home in even more style. Aboard Concorde no less!
I booked a car and driver to pick us up from Heathrow and take us back to Erith. I couldn’t bear the thought of all that luxury being undone by the usual challenges of travelling on public transport. Feel free to call me a snob.
With the Huntington’s disease (HD) sword of Damocles hanging over Steve’s head, we had decided very early on that we were going to make the most of every day. Given late thirties/early forties as being the typical age for starting to develop HD symptoms, we planned packing in as much as possible before hitting forty.
Both Steve and I were very saddened when Concorde was taken out of service in 2003. We were so very grateful that we got the chance to fly on her. As I have said in previous blogs, so many people put off stuff until tomorrow. For some, tomorrow never comes.
Forward supersonic fast to 22 November 2017. I was sitting at my computer with my morning cuppa and logged on to the BBC News Website. Among the story links on screen there was one on Concorde. Forty years ago, on 22 November 1977, Concorde made her first commercial flight between London and New York. The linked article was entitled – Concorde stories: Remembering the ‘pocket rocket’. The link to the article is HERE.
I clicked on the link and started reading. I scrolled down the screen enjoying the shared experiences. Then, to my utter amazement, I saw it actually included an anecdote I had shared on another website a long while back. Mine and Steve’s anecdote had been chosen to be used within the BBC article under the heading ‘The memories are precious’.
It was a wonderful surprise! It was just by chance that I found it where not working that morning and having time to browse. An early anniversary present from Steve no doubt.
I am sure you have guessed by now that the above covered ‘Supersonic flights’. So what of the ‘Human Rights’ reference in the blog title?
In my previous blog I mentioned getting a name check in the House of Commons (HC). No, I have not been involved in chaining myself to the railings of HC. Nor have I been pulled up for allowing Pinky Sybil to use a lamppost opposite. Check out my #SybilOnTour #LondonUnderground video HERE if you have not already seen it and know where I am coming from.
The background to the HC mention is this…
Back in January, January 3rd to be precise, I logged onto Twitter for a nosey at what’s occurring and was surprised to see a tweet from Scottish Huntington’s Association (SHA) stating this
We have succeeded in getting a Westminster Parliamentary debate around Huntington’s disease and #geneticdiscrimination on Monday January 8. Please lobby your local MP to take part and end this practice. Find out more:
The subject matter focused on being able to purchase insurance and life cover when it comes to families with a genetic link to HD. The discrimination was not news to me. Back in 2011, when compiling my book, I featured my poem ‘The Insurance Salesman’. You can read the full poem below. With many stories of families being penalised, I was angry the government had allowed HD to be singled out as a named disease for discrimination when it came to insurance.
The Insurance Salesman
In October 2000, Britain became the first nation to approve the commercial use of gene technology to allow insurers to refuse insurance cover; or to push up premiums for those born with genes that could lead to fatal conditions. HD was singled out as the only case allowed immediate discrimination because of the reliability of the test. This meant for a person having tested positive, insurers gained the right in certain circumstances to refuse to insure, or to legally load the premium to extortionate levels (300% has been cited).
So let’s take a hypothetical scenario…
Let’s say a person took the test at eighteen and tested positive. There are no signs of HD but he wanted to know if he had the gene. At twenty, he applies for cover but has to declare a positive gene result and the cost of the insurance cover reflects this. At the same time his twenty year old neighbour has also applied for cover but he does not have any record of HD in the family. That’s not to say he has no links to HD or any other potentially fatal disease, he just doesn’t know about it yet. His policy costs 100% less.
The HD+ person pays the loaded cover pricing from day one but, where HD is not an exact science, he does not become symptomatic until in his sixties (known as ‘Late Onset’). In those forty years, before symptoms appear, the person has led a HD free and health conscious life whereas his neighbour has not, and needs to draw on the cover much earlier.
It occurs to me there seems to have been no consideration of the fact that until symptoms start showing and presenting a problem, the person with the HD gene may have the gene but does not have HD itself! It’s no wonder this discrimination drives some people to delay testing where they feel it may compromise their right to be treated fairly being refused mortgage cover etc.
Please note: As at time of writing this (March 2011) The Association of British Insurers (ABI) has a Code of Conduct stipulating rules which all its Members are obliged to follow. The Code sets out clear guidance where the use of genetic information may be used in calculating cover requirements. No Insurer can request an applicant take a genetic test for consideration of insurance. Set levels of values of policies dictate whether test results can be used in the assessment.
The HDA have prepared a Fact Sheet ‘Advice on Life Assurance, Pensions, Mortgages etc.’ which is available direct from the HDA or accessed through their website.
He’s looking at the paperwork;
He’s thinking of commission.
He’ll reach his bonus target soon,
Just one more sale he’s missing.
And this signed piece of paper,
Will take him to his score.
Be home in time for dinner;
So glad he chose this door.
But hold on, wait a minute;
What’s she put on that bit?
‘Genetic testing… Huntington’s’,
He nearly has a fit!
He grabs the piece of paper;
Ignores her look so sad.
She thinks that we’ll insure her life?
The woman must be mad!
The MP taking the debate forward was Gavin Newlands. I approached his office and through exchanges with his staff by e-mail and phone I was able to highlight various elements of HD discrimination. My examples and links to examples were gratefully received.
My input must have made an impression as, in the course of his speech, Gavin mentioned me personally and referred to Steve which I was touched by.
The SHA believes that the business model that many insurance companies use to calculate risk is limited and does not collect all the genetic information available to calculate more precisely an individual’s health conditions. In other words, if we must use genetics, let us use them properly. This point is reinforced by an email that I received from Trish Dainton, whose husband sadly passed away from Huntington’s. She highlighted the unfairness of a system that can increase an individual’s premiums to ridiculously high levels on the assumption that they might have the HD gene but might not start developing the symptoms for 40-plus years.
As luck would have it, a Cabinet re-shuffle was made very shortly after the 8 January debate. When I say very shortly, I mean the very next day. My heart sunk when the Minister with ears for the matter and potential power to make change, (Stephen Barclay) would now have no further direct involvement. At least Stephen was moving to Department of Health and Social Care so the plight of those with HD would at least still be fresh in his mind.
In the shuffle, the Economic Secretary to the Treasury and City role was dealt to John Glen. Whether down to lobbying by SHA, or down to John being committed to pick up the baton from Stephen and and run with it, it was a relief to hear John kept his colleague’s promise to meet again with SHA etc. The meeting took place just a few weeks later, on 21st February. See HERE for a press article on the meeting.
In the intro of my poem I highlighted this point:
No consideration of the fact that until symptoms start showing and presenting a problem, the person with the HD gene may have the gene but does not have HD itself! Another side of that also applies. Just because HD is in the genetic makeup of the person, that doesn’t mean they would not need cover against other health conditions. As things stand, it appears companies are blinkered and using HD as an excuse to deny offering a full and fair choice of policies. John Eden, Chief Executive of SHA, wrote a marvellous piece on the issues. His article ‘Until the Penny Drops’ can be read HERE.
Surely it is a HUMAN RIGHT to be given the same options as any other person? Maybe a Human Right’s Lawyer will take it on one day. In the meantime; to the Insurance sector I would like to say:
PEOPLE WITH HD DESERVE UNDERWRITING, NOT WRITING OFF!
Here’s hoping the work done by the SHA and others now moves forward at a supersonic pace, rather than a snail’s pace as it has done in the past. One of the new jet boosters must surely be the Pandora’s Box of genetic testing for other conditions. I have a feeling it will be the start of something big.
As for other news…
I have not done much about finding Steve’s CAG count so that’s still on my list of things to complete. Everything seems to have gone quiet on ABC Vs St Georges. I dare say it will make the news headlines again at some stage.
Being a Gemini, I have another project on the go which is taking up a lot of my time at the moment. I am looking into the very interesting story of Henry (Harry) Dainton. Harry was hung at Shepton Mallet for the murder of his wife in 1891.
For quite a few years now I have been thinking about delving into the story. This year, I thought I would finally do more research. Readers of my blog will know I often refer to being drawn to things and there turning out to be a spooky serendipity element. This compulsion has turned out to be spooky too. You can get a taster in Claire Sully’s Blog entry UNCOVERING SHEPTON MALLET PRISON RAISES MORE QUESTIONS. To be continued in my next blog.
For now though…
I am going to end on a new poem and some snapshots from our May 1998 trip – Steve on Orient Express looking wonderfully smug; Steve posing in St Tropez and Steve getting ready to board Concorde. I was tempted to add loads more snaps but you get the picture (literally) At the very end there is a link to another Queen track. I am sure you can guess which one it might be.
Twenty years ago my love, we were living the dream.
Strangers looking on with envy; not all it would seem.
Spoilt, with more money than sense, I’m sure that’s what they thought.
Even friends and family, into that myth they bought.
We were buying memories; investing in the past.
A time to store experience; each trip could be our last.
I’m glad I caught your travel bug and shared such times with you.
It’s fair to say the bug was cured the day your life was through.
There’s nowhere now I’d rather be; no bucket list to write.
I’ve done all that I dreamed about; not least a Concorde flight!
How many people out there get to do what we could do?
The nightmares of HD were there, but still good dreams came true.
QUEEN – ‘DON’T STOP ME NOW’
Yes, we made a Supersonic Man out of You!
Happy Birthday Sweetheart! XXX