Monthly Archives: May 2016
Today (14 May 2016) would have been Steve’s 55th Birthday.
As I mentioned previously in my post ‘COINCIDENCE OR SIXTH SENSE?‘, had Steve been alive and relatively well it would have been the time we planned to ‘retire’ and get that ‘bungalow by the sea’ as I wrote about in my poem – The Best is Yet to be.
Meant to retire together;
Married same age as me;
We both envisaged a company clock,
And a bungalow by the sea!
Sadly we didn’t get that far…
As time goes by, I still try to cope with those bitter-sweet moments in life when I want to celebrate events that I know would make Steve really happy, but he’s not here in the flesh and blood to openly celebrate with.
For example, Crystal Palace Football Club getting promoted; their staying up for more than just one Season which was quite an achievement I can tell you; and now their getting through to the The FA Cup Final next week!
Where I am still doing the Goals4Genes in Steve’s Justgiving Page I will be donating £10 per Cup Final goal (£2 per League Goal; £5 per Cup Tie goal and £10 per Cup Final goal). To date we have raised £1,820.93 including GiftAid.
Had Steve still been alive, even if in a bed 24/7 and in need of special equipment, trust me when I say I would have found a way to get Steve to Wembley again, to watch his beloved Team play Manchester United in the FA Cup.
I am, if nothing, tenacious! I even hired an ambulance and trained driver to get us to Park House within 24 hours of Steve being discharged from Hospital. With that in place, the Hospital Consultant signed off a discharge on a Sunday afternoon, having admitted Steve 24 hours earlier with a suspected stroke.
That was after organising an urgent brain scan on a Sunday rather than wait. We are talking 2009 here and the ‘System’ didn’t seem to fail us through the lack of Junior Doctors and weekend workers on site. They were there working hard for the public as always! Jeremy Hunt please take note!
The Consultant agreed Steve’s recovery would be better served by our going to Park House as planned and not being heartbroken at losing our respite break together at such an amazing place. Some would say I was foolish to request a discharge, but with what Steve had, I figured his quality of life beat length of life hands down.
The Park House trip perked Steve up no end and he rapidly recovered. Thus proving his episode the previous Saturday was more down to tiredness; dehydration and being overwhelmed with a barrage of medical/social-services appointments, and sudden influx of carers coming into our home.
In the absence of now being able to go anywhere with Steve as it were, we will watch The Cup Final on the telly like most people. Then again, I dare say most people do not have a conversation with a casket of ashes whilst watching telly. Our application to participate in C4 Gogglebox could prove interesting…
When I blogged for Steve’s birthday last year in THE FAIRNESS OF AWARENESS, I mentioned Steve’s birthday coincided with Huntington’s disease Awareness Week. Once again, Steve’s birthday falls in the Awareness Week ( 9th-15th May ) and I have been working on a little project since the beginning of the year.
I approached a few people asking if they would be kind enough to read one or more of my poems and send to me on video. I would then send out using social media either in toto or adapting further to build in more background/awareness information. I was absolutely thrilled when Carol Royle and Mark Moraghan sent in videos.
With Carol’s help, I was able to put out 4 videos. The first 3 (see all 4 below) are of individual poems. The 4th video is the original read through that Carol sent featuring all three poems.
I was extremely touched to see Carol’s emotions crescendo as she builds to the last poem which was a very personal one written for Steve in my blog INSPIRATION NOT FRUSTRATION.
It was as if Carol felt my pain, and felt empathy for Steve too along with the enormous sadness of losing someone so special so young. Her anger also shines through in ‘The Name Game’ on behalf of those dealing with ignorance. I could not have received any greater a compliment!
Such was the lovely reception of Carol’s readings, the HDA asked me to compose a special poem for her to read at an event on the eve of the London Marathon. It was to be read to the runners and supporters. I wasn’t at the Event myself but I understand it was very well received and beautifully read by Carol as ever.
Here is what Carol read at the Event:
As I mentioned earlier, I was also very happy to be able to work with Mark Moraghan who sent in a video. Mark was approached initially by another HD Widow and HD Advocate – Sue Wright. Sue had been Mark’s neighbour.
With Carol’s help also (she knew Mark from working with him in the past) I was able to put out another video featuring 2 poems (see below). The reading is of the poems ‘The Wheelchair Outing’ and ‘The Corrupted Computer’.
Once again I was truly touched by the depth of feeling and understanding afforded to my poems by the reader. A mixture of exasperation and anger at the behaviour of others and the frustration of vulnerability.
Mark’s cheeky Liverpudlian accent adds extra charm to the thought of ‘Bert’ riding a little train through the person’s brain along the tracks of his neurons. What makes it even more sweet is Mark is no stranger to narrating on a train theme. Here he is talking about Thomas The Tank Engine.
Apart from the amazing awareness opportunity afforded by Carol on the back of her performance in Casualty, and let’s not forget Mark worked on the sister show Holby, the HD Community has been thrilled at the engagement by people wanting to help the cause!
I personally have had a lot of support on Twitter from the Fans of Richard Winsor @RWinsorFans. Richard plays the character Cal in Casualty. In the programme, Cal and his brother Ethan , played by George Rainsford, are reunited with their mother who was played by Carol. Cal is spared the HD gene but poor Ethan has the mutation.
They have been amazing in opening up a Fundraiser Page for the HDA. They have also set up an area on their website to cover HD and posted HD awareness videos etc. Wonderful to have such a lovely and caring bunch of people on board!
Going back to my little videos, regular readers will have spotted I often blog about getting those strange and spooky connection moments when things just seem to happen as if I were getting help from you know who!
I’ve done various slideshow type videos in the past and used music which either helped tell the story; for example My Wedding Slideshow, or the track seemed to feel right for the video. I do, of course, try to credit the music but I have always been aware the copyright issues could come back and bite me on the bum! Me and millions more no doubt.
Where working with others on the new videos, I needed to up my game and look at options for safeguarding the music issues so that it wouldn’t compromise them.
At Steve’s Wake I gave away DVDs containing a slide-show of photos of Steve to music which I had made. I went to the trouble of getting a ‘Limited Manufacture Licence‘ for the DVD (25 units, 25 minutes of music or less.) The Licence cost me just over £50.
However,when it comes to extending music licensing to internet use it is a lot LOT more as I am sure you can imagine. I did think of using no music at all so as to be safe but it didn’t feel right leaving out a soundtrack.
So I did what I do these days. I gave up exhausting my brain with looking for solutions by researching an endless list of websites. I put the telly on; put the kettle on; raided the cake tin; and said to Steve out loud “something will turn up Sweetheart”.
After my tea and telly break I went back to the computer and logged into Twitter to see what was occurring in the land of Twits. And, you guessed it, the answer popped up right in front of my eyes!!!!
Considering I follow around 400 Twitter Accounts at any one time, when I logged on to Twitter I opened on to a feed of Tweets under the theme of #AskHerFilm. That was for a Q&A session with Lucy Walker.
I previously blogged about Lucy this very time last year when featuring information and links for film makers covering HD. Scroll down THE FAIRNESS OF AWARENESS to where I mention her film ‘The Lion’s Mouth Opens’.
Here is what was on my screen:
How amazing that, at that exact time, someone under @Sarah_Haas asked a question about music used in Lucy’s films. And also that Lucy replied immediately giving the site mobygratis.com.
I made sure to get a screen shot to look at properly where I couldn’t believe my eyes. But then again… I should have known by now the way Steve works. I’m not too greedy though and never ask for the Lottery numbers in case anyone was wondering lol.
When I looked into how Mobygratis works it seemed the perfect solution. I was able to secure beautiful and powerful soundtracks under licence from Moby who so generously supports independent film and video projects which are not-for-profit.
What were the chances of that all happening eh?
I’m going to close with a poem for Steve and a photo. The photo was taken 10 years ago. Steve and me were on a cruise and it was the last time we went ‘abroad’ for his birthday. It was taken in Madeira during a ride on the Monte/Funchal Toboggan-run.
Steve looks so happy. Who would have thought he was in the advancing stages of HD and dead within 5 years? I don’t think he has quite twigged at that stage of the ride we would soon be hurtling down a very steep and winding public pathway without brakes!
I look like I am aware and am gearing up to laugh and scream in terrified hysterics at the same time. Thinking about it, I think I have just described what it is like to be a couple travelling the journey that is called Huntington’s disease.
I’m so grateful I was able to cling on to Steve’s arm and be by his side for the journey. And that he knew I was by his side until the journey stopped. That is, of course, if it ever has stopped…
Your birthday’s come around once more;
I’m still at home just like before.
I’m still reflecting on our life,
And still deflecting grief’s sharp knife.
A knife not aimed to wound the heart,
But trying to cut the ties apart.
I’ll dodge the knife another year;
I’m happy that I am still here.
I’m happy that you’re still here too;
Your impact runs through all I do.
Another case of your connection,
Leading me in right direction?
You still provide a strong desire,
To share our story and inspire.
And others share our sweet devotion,
Through poetry, wrapped in emotion.