Monthly Archives: November 2019
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!