ON THE WINGS OF AN EAGLE & DOVE; CARRIES FAITH, HOPE, & LOVE.

Tomorrow (May 14th 2017) marks Steve’s 56th birthday. That said, the birthdays after his 49th in 2010 have been in a different form of carbon and aura. As opposed to the flesh and blood (albeit blood with a dodgy chromosome), and sparkly eyed fabulously cheeky laugh format that is…

I haven’t yet been able to manage getting to his party in Heaven. We sang No one but You ( Only the good die young ) at Steve’s funeral rather than have a hymn. Based on that criterion, I guess I shall be around a lot longer. Therefore I still need to do a virtual celebration of Steve’s life and awesomeness right here on Planet Earth.

My previous entries to mark Steve’s birthdays since 2010 can be seen by clicking on the links 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

Huntington’s disease (HD) Awareness Week starts in earnest Monday May 15th. I toyed with the idea of travelling to Rome to take part in an amazing global HD awareness opportunity. His Holiness The Pope, no less, is giving a ‘Special audience’ with members of the HD Community and a public address/blessing.

More details of the event, which is being held on Thursday May 18th and known as HDennomore, can be seen HERE.  One of the driving forces behind HDennomore has been the wonderful Charles Sabine who I had the pleasure of meeting in 2015. I blogged about our meeting at a film event HERE.

I say ‘toyed with the idea’. I have my shiny new passport as outlined in my previous blog but didn’t know about the event when I got it. Part of me was thinking maybe it was more than a coincidence? I also mentioned in that blog though that I have no intention of ever travelling again without Steve. Even Pope Francis can’t make up for Steve not being there by my side on such an occasion.

I visited Rome with Steve in 2004. Among the guided tours we took during our holiday was a trip to The Vatican.  We had a really lovely holiday in Rome and it was good to get another of our Bucket List wishes ticked off. I couldn’t go back without Steve.

We both took our cameras and, as usual, Steve managed to take the best pictures even being HD symptomatic . There is a particularly special picture that Steve took at The Vatican. Everyone else is looking around at the architecture to take pictures. Steve has managed to not only capture the architecture but what looks like a single dove flying above the Square. Priceless!80 Rome

I am not a religious person. I am certainly not expecting anyone blessed by The Pope to be instantly cured, if ever at all. It is, however, a fantastic way to get media attention for the disease and plight of those affected by it in whatever capacity.

There is a focus for the Event on families from South America. This is a region of the world known only too well by The Pope. They are among those who have the worst of the worst when it comes to help and healthcare. When we consider HD would be nowhere near as far down the line for treatment and cures had the families of Lake Maracaibo not allowed Nancy Wexler and her Team to find the HD gene it is only fair they be recognised for their role in the HD story. See HERE for more about the story.

What about my own meagre efforts? Since Steve’s last birthday blog I have not really done much by way of raising awareness myself unless you count:

Taking #SybilOnTour around every London Underground station and making a video slideshow of it. Click HERE to see the video and read more about the adventure in my blog – WARNING SIGNS & TUBE-TRAIN LINES.

And

Taking #SybilOnTour to The London Pantomime Horse Race (LPHR). The best way to describe LPHR is a crazy afternoon of eccentric people dressing up in panto horse costume as an excuse to do a pub crawl around Greenwich. The Race is done for charity and there’s a little video giving the flavour of LPHR HERE.

I have to stress neither Sybil or I actually competed, we were just spectators, but we did manage to get in a photo op for Sybil with the lovely Caroline Harbord CH and Sybil

Caroline sings with the Lewisham and Greenwich Choir, AKA The NHS Choir.  They were performing at LPHR and you may remember them as the act that pipped Justin Bieber to the UK Christmas Number 1 spot in 2015!

One of the other performers, who did a song with The NHS Choir, was a guy called Dr Milad Shadrooh. He is also known as The Singing Dentist. They did a brilliant parody of Pharrell Williams’ song Happy. Their version is appropriately called Gappy. See the video HERE.

Being me, I couldn’t resist having a go at writing a parody set of lyrics myself based on a dental theme. I re-wrote Enya’s Orinoco Flow and made it into Scale Away. My take on it can be seen/heard HERE. Apologies for the awful voice but in the absence of having a proper choir, or professional artist helping out, I am afraid it is just my squeals. Ideas for a Huntington’s disease Choir anybody?

As for developments since my last blog

I had hoped to be able to give an update in here on my search for Steve’s CAG count ; and also report back the outcome of the Appeal under the  Duty to Warn court case. As I post this blog entry on May 13th the position is as follows:

Regarding Duty to Warn/Duty of Care ( ABC v St Georges Healthcare NHS Trust and Others ) there is little to report. I did manage to get to the Royal Courts of Justice for a few hours on the 2nd day of the hearing. I was only there for one morning but I was glad I showed my face. I may be wrong but I did not see anyone from the HDA present which surprised me. I was able to offer my thanks to the Claimant for pursuing the matter as it was obviously not an easy thing to do. She seemed very touched and grateful that others cared.

From the brief time that I was there, it was very clear to me that such a complex case could not be decided simply on the basis of the information and ‘ trial bundles‘ that were being presented for consideration. There also, clearly, needed to be much more time than the 7.5 hours listed to do justice to the implications of what could be such a landmark case. In a Guest Blog on the GenomeEthics website, Dr Vicky Chico has blogged about the matter and sums up some of the issues arising. Read her blog post HERE.

As at time of posting this blog entry, the Case is still shown on  Case Tracker as ‘waiting result of a reserved judgment’. In a nutshell, this means the decision is being held back while more evidence and opinions from others is being taken before an informed judgement can be made.

Personally, I think that status is reassuring. It seems to afford the Claimant and the subject matter more respect where it is so complex. There is still so little known about HD, including the ramifications of genetic information being made available or withheld for whatever reason or whatever hereditary disease. That became evident from the questions being asked by the judges who were seeking to clarify the weight of the arguments.

On the posthumous search for Steve’s medical notes/genetic data and his CAG Count…

I posted off my application for access to Steve’s medical records in January. The cheque I enclosed for the service was cashed by Capita on February 13th. Having sent a number of e-mails and getting no replies at all, and having made a number of calls, I was told recently that they are apparently at ‘Stage 2′ in the process. The call centre I need to deal with don’t actually know what Stage 2 even means but assure me something is happening and I will get papers “soon”.

At one stage they denied receiving my application, only to back-track when I pointed out they must have had it where they cashed the cheque in February! At that point they admitted they had lost track of it in the system!

Fortunately I am in a much less stressed state of being than I was when as a carer. It’s not like I need the details as a matter of urgency but that is not the point. It has brought back to mind and heart the feeling of utter frustration and helplessness arising from other peoples’ perceived incompetence along with lack of caring about the customer. I did a bit of searching on Capita. It does not surprise me they are getting bad press from handling the NHS Medical Records contract.

There were times when looking after Steve that I was coping with things where I had, in effect, control of the situation. When external control was making life harder for us, for example medical receptionists messing up appointments; the hospital transport system sending drivers to the wrong place and our losing appointments we had been waiting six long months for; staff being on leave and not sorting out cover properly meaning we would be short of medical supplies and services etc… Those were the times I just wanted to throw the towel in! Those were the times I would end up losing it! Those were the times I would feel helpless and hopeless and they obviously impacted on Steve.

It also brings back to me how lonely it felt being a carer to someone at late stage HD. Communication was still there in many ways but not at the level where Steve and I could engage in a conversation about things beyond my control. This was to the point where he could not see that I had done all I possibly could to help him/us and it was others who were to blame, not me. He relied on me and I would feel a complete failure more than a victim of other people not doing their bit properly. As a self-confessed control freak, such times could mentally tip me over the edge!

I use the word ‘incompetence’ above. It is a very strong word and I do always need to bear in mind that the people providing the services are often at the mercy of the ever changing computer systems they work with. Too many changes or too few changes? Even as I post this blog the NHS is in chaos where it has been under attack from a cyber threat. Thousands of people are impacted. It appears when the computers go down, the NHS cannot do even a simple task of taking appointments or handling routine operations.

Those computer systems are often not fit-for-purpose where no one has properly taken time to talk with/test with the people who actually need to use them – the End User. Even more unlikely is consultation with the Ultimate End User (the customer/patient/carer). They are the ones most impacted when the systems and people using them do not deliver the level of service which is needed. Will it ever change? Sadly I think things will get worse and worse to the point where it all implodes.

When we think of the human brain being the computer of our own bodies, it only takes a dodgy bit of programming and wiring as it were, and it is no wonder the mind and body can feel like giving in. In my book CURSE IN VERSE AND MUCH MORE WORSE I wrote a poem called The Corrupted Computer. The actor Mark Moraghan kindly did a reading for me which can be seen HERE.

I described my feelings of helplessness above when being frustrated by things beyond my control. My own frustrations and limitations were minuscule compared to what Steve  was having to cope with.

Most of the poems in my book were written before Steve died. I am grateful I was able to use writing to record that I recognised how much harder things must have been for Steve than for me. This was even before I had time to reflect on things after Steve’s death which can put a whole new slant on things. It helps me better come to terms with my wife/friend/carer/advocate role whilst he was still alive, and when it really mattered.

So…What am I doing this year on Steve’s birthday?

I am staying at home as ever now but I am sure we will both be emotionally exhausted by the end of the day. That is, unless Steve can have a word with God and The Pope to ensure Crystal Palace get the breaks they deserve. I previously blogged about Steve’s love of Palace in my blog of August 2013 – PLAYING FOR LAUGHS. So proud that Palace had been promoted but so sad too that Steve had not lived to see them go up.

Palace (aka The EAGLES) are on telly and are playing Hull City (aka The TIGERS) in what could prove to be the most crucial match of the entire Season! Some call it a ‘six pointer’ but it’s much more important than that. If Palace do not win, or at least draw and get a point, they may still be relegated. Hull are their nearest rivals with only four points between them. With just this match, and one more left which happens to be away to Manchester United, it is crucial they don’t fall at the last hurdle!

In Roman terms, their Captain – Jason Puncheon – represents the Aquilifer. Leading the Team/Army and the legendary South London Army of fans into a fight for survival .  Whilst Jason may not actually have an eagle standard to hold on to (and sadly he could do with a set of armour and helmet too given Wardy was given a broken nose last time out) he does have the blessing of a real live eagle! The beautiful Kayla who is the Team Mascot. The Referee will be Martin Atkinson. Just like the Emperor in Rome, at the gesture of a hand the Ref can condemn a Team in an instant. It doesn’t matter how well the Players play their fate is in his hands (and that of his optician)!

Then again…. If Palace do get relegated it will be the start of just another chapter of being a CPFC fan. I marvel at just how much Stress Steve was subjected to. The highs are euphoric and the lows are unbearable at times. Something I did not fully appreciate until now. The goals will be fought for in whatever Division played in, and they will all go towards helping the HDA in Steve’s memory via our fundraising page.

At the beginning of this blog I mentioned a Queen song was played at Steve’s funeral. There was always going to be at least one Queen song to remember him by. However, there was meant to be a Monty Python song playing for The Committal and our leaving the Chapel. Steve wanted Always look on the bright side of life. I bottled it when it came to requesting the music and asked for Pink Floyd’s Echoes instead.

Steve had a wonderful sense of humour. Coupled with his love of the film Life of Brian it was one of those songs we joked would be cool to have at our funerals. Having a sense of humour was paramount to stopping HD destroy him before he would become symptomatic, and to a greater degree for the years after it emerged.

What have the Romans ever done for us? They gave me and Steve a fabulous holiday and we loved seeing the ancient ruins of a great civilisation. I hope those who get to travel to Rome for the May 18th Event find it as special as we did. And that the day marks a historical shift in media attention to help HD emerge out of the shadows and be Hidden No More.

I am going to end with and a photo of Steve from our holiday and a poem for Steve. The photo was taken on August 17th 2004 at Ostia Antica.  It was a very hot day. There was a lot of walking, not all of it on level ground, and we were being guided by a tour guide who had a heap to pack in during such a short time. I was flagging but Steve still managed to keep a smile on his lovely face.

Although not formally diagnosed until 2005, in 2004 it was clear to everyone that Steve was demonstrating the early signs of HD. Whether Steve is counted in on ‘everyone’ is debatable but he was beginning to get a gait which made walking harder and was dropping weight like a stone.

His patience; tolerance; stamina; tenacity; and utter determination not to be seen as someone with a health issue is extraordinary! HD was about to feed him to the lions and tigers. Having seen other family members fight for their lives in the  HD arena, and none of them survive, he was as brave as any Roman Gladiator!

The photo is also very poignant to me as it was taken exactly 17 years to the day that Steve and I had been to a friend’s birthday drink. He flirted with me to the point that we started dating. And the rest, as they say, is history… Although, as long as I keep Steve’s memory alive he will never be ancient history.

Picture 013

Telly on, the match begins. A lot depends upon who wins.

Another Season nearing end; another goal-mouth to defend.

I get excited; hope we score, I wasn’t like this once before.

I’d be at home with things to do, content you had your own life too.

 

 

Years ago you would have gone; with fellow fans you’d sing along.

Come back later, scarf in hand, I didn’t really understand.

I’d smile, commiserate, pass beer, serve dinner; later disappear.

While sat at TV you would stay, and watch again ‘Match Of The Day’.

 

 

The next day you’d devour the news, and read up on the pundit’s views.

On holiday we’d have to find, a paper though one day behind.

Your passion for the game came through; it was indeed a part of you.

I’m glad I wasn’t one to moan, a football widow on my own.

 

 

Supporting you; your sheer frustration. Times you faced a relegation.

Times of joy when going up, so close to raising FA Cup!

Then later on with HD growing, things got too hard to keep on going.

You stayed at home and watched TV, with only me for company.

 

 

Come Saturday when footy came, we’d always strive to catch the game.

Whatever outcome, lose, win draw; you loved to cheer your Team once more.

Your Birthday this year marks a day, when so much rests on how they play.

I’ll sit and watch with glass in hand. I get it now, I understand.

 

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Posted on May 13, 2017, in Uncategorized. Bookmark the permalink. Leave a comment.

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