Pull Emergency Cord, and Scramble Aboard.
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!