Monthly Archives: July 2014


Today (27th July 2014) marks 3 and a half years since Steve beat Huntington’s disease (HD) by opting out. With every day that goes by, something else happens in the world that makes me realise that, for all the grief of witnessing HD and losing Steve, I feel blessed to have been here with him when he actually died.

The news is filled with reports about the ‘shot down’ flight over the Ukraine – MH17. I am not sure what is worse… The missing flight MH370 with no trace and perhaps still hope for the families yet no closure; or MH17 with its wreckage and shocking pictures posted up on social and other media. That’s not including all the media coverage where News reports around the world spoke of looting the victims, and sparse consideration and respect for their bodies with being left in situ so long, or for their belongings.

Sadly the relatives of the MH370 and MH17 victims will never be able to have the chance to say goodbye as I did with Steve. Aware that time was growing short, and the peace of being together at home. Not that I have ever really said goodbye.

Even when I leave the home now, I say “tatty bye for the moment. Be back soon as possible sweetheart”. I rush home from places and make sure I acknowledge Steve’s casket and photos as soon as I am in. He’s still living at home as far as I am concerned.

In terms of changes in my circumstances over this last three and a half years, and I truly cannot  get my head around how I am still existing so long after Steve’s death, I take comfort in not being forced to move on physically or emotionally.

I’m still in the same flat. I don’t technically need a two bedroom flat any more. A one Bed flat would certainly be a lot cheaper where I pay the full rent and Council Tax from my own purse.

However, when I looked at a few one bedroom flats the savings in cost was outweighed by the emotional cost of moving. I even viewed them with trying to work out how I could fit into a one bed flat Steve’s sleepLow bed and chairs among all the other furniture we have. I couldn’t think of getting rid of anything.

The biggest change in my personal circumstances is that I very recently started a permanent full-time job. The job is fairly local. It’s in a Buying Department; it’s administration which suits me fine.

I’ve mentioned in previous blogs how fortunate I feel to have so many photos of Steve/Steve and me. I have more good memories of our time than bad and they continue to be built upon. That said, something usually reduces me to tears in private nearly every day. It’s verging on masochism where I feel guilty if I don’t cry at least once a day. As if to feel the wound is healed and not painful any more.

The blog entry and poem I did for July 2011 – For Steve is still very apt

So life carries on and there’s good times and bad,

As the wound of grief heals it gets less and less sad,

And the ghost of your illness walks further away,

But I call to the ghost and I beg it to stay,

Being at work now, and needing to get up at stupid O’clock to fit in all the rituals like watching our slideshows when I get up and before I leave the home does make me sacrifice one area of our life… Television.

I decided I was not going to stay up to watch the opening of the Commonwealth Games. I think Steve was relieved as it featured John Barrowman. We both went right off him when, after being so great in Dr Who, he seemed to be on EVERYTHING and we got sick of the sight of him!

I have since seen the highlights of the Opening Ceremony and I don’t think I missed much (Sorry Scotland but I’m still raving about the London Olympics).

This day 2012 was the Opening of The London Olympics and my blog The Real Olympians reflected that. I still think those with Huntington’s show strength of body; brain capacity and handling emotional struggles which deserve a Gold Medal.

I also decided to stay up late only for games in The World Cup where England were featured. Lots of early nights there then lol.

England’s not getting past the first stage reminded me of the last World Cup. We fared better that time but there was a beautifully coherent moment with Steve at Park House  Hotel which I just had to share within a post on the Huntington’s Disease Association (HDA) Message Board.

At Park House the pace was slower; the care and hotel staff built up good relations with us and had time to talk to us. It would bring Steve out of his shell even more and he would be like a new man each time we had a break there.

At the bottom of a Thread asking about  Personality Changes I was able to demonstrate the person inside does not always lose everything. Steve’s comment when being asked about England’s chances in the 2010 World Cup he said ‘They are bound to lose”.

While we are on the subject of football, my July 2013 Blog  Playing for laughs mentions my adopted love of Crystal Palace Football Club aka The Eagles. They managed to silence all the critics after a bit of a rocky start and return to play in the Barclays Premier League in a few weeks time.

I still donate to Steve’s Justgiving Page on the basis of £2 per league goal; £5 per cup match goal and £10 per cup final goal. Donations from me and others currently stand at £1,020.30 which  goes to the HDA.

I don’t normally donate for the pre-season friendlies but probably will do this year once I have the final total. Based on £1 per goal, I am due to donate £16 so far. We won 13-1 against GAK Graz; drew 2-2 against the Columbus Crew and won 1-0 against the Philadelphia Union although it was an own goal by the opponents that helped us win.

Another area of Steve’s life with HD, where I truly feel external factors penetrated the very core of his being, was music. My blog entry Brainwaves for the airwaves  refers to how music had an overwhelming effect on Steve. I have been pleased to see how much those in the medical and care profession are taking seriously the influence of music.

On the HDA website they are currently advertising a HD Questionnaire which is part of a thesis being done on the emotional impact of music in those with HD. I am never sure who reads this blog, if indeed anyone des for that matter, but if you live in London or the Home Counties I would urge you to get in touch with Shirin to see if you could be of help with her thesis.

I am closing this post on a new poem for Steve and some photos.

The first photo is of Steve sitting on a heavy leather bucket chair that I got him. He’s by the table his casket is now on although the table is in another part of our lounge (by my PC)

The second photo is of Steve in bed during the final days of his life. He is very weary and weak bless him

The third is of the chair he died in. Ruby is sitting in it guarding a photo but I now have Ruby and Ruby Tuesday (don’t ask) sitting in it with Mr Leopard. A cuddly toy Amur Leopard which came with the WWF adoption pack. Steve would have wanted to help the Amurs where they are so endangered.

I have also put in a Queen song just below. Like many people, I would not be able to pick out my favourite song of all time. It changes from one day to the next. It’s fair to say Steve was the same too but Queen will always be his top Group.

I recall we were having a night of playing records when Steve said “I love this song”. The song was ‘Love of my life’. I was taken aback as I’d never actually heard that song before. It’s possibly one of the most beautiful songs on the planet. But then Steve was, and is, one of the most beautiful of people…

Love of my Life – Queen


Poem for Steve… The Love of my Life


I’ve looked at flats and seen the rent,

It’s true they’d mean less money spent,

But every contact left its trace,

In every fibre of THIS place.

The flat’s I’ve seen, to move felt wrong,

Don’t worry, I’m not Moving On.


I’ll move up to your chair and bed,

Caress the place you laid your head,

Imagine that you’re still asleep,

And out of room I’ll quietly creep.

 The flat’s intact, there’s nothing gone,

Don’t worry, I’m not Moving On.


I sit and watch a TV show,

And think of how you’d love it so.

The radio reminds me too,

Of music that was loved by you.

 I’ll still sing to your favourite song,

Don’t worry, I’m not moving on.


Converted to an Eagles Fan,

I follow closely all I can.

On Palace Player or TV,

I cheer and curse the Referee.

 Proud to add to Palace throng,

Don’t worry, I’m not moving on.


 I’ve found a job that’s right for me,

It’s at a local company.

It does feel right to work again,

Though leaving you still causes pain.

 I’ll be right back, I won’t be long,

Don’t worry, I’m not Moving On.


When waking up, on goes PC,

I watch slideshows of you and me.

If meeting someone, they can wait,

I do not care if I am late.

 The visuals and the words  belong,

 Don’t worry, I’m not moving on.


We’ll chat, and laugh and share some views,

I’ll tell you of my latest news.

You’ll send me signs you’re still around,

An image or familiar sound.

 I feel your presence, still so strong,

Don’t worry, WE’RE not moving on.