Monthly Archives: July 2012
When I met Steve he was incredibly athletic. He played cricket; football; tennis and badminton. Huntington’s disease stripped him of his hand/eye coordination and balance which put paid to his sporting prowess.
He gave up playing when he became embarrassed about not being as good as he was before and comments would be made even though they were made in a light hearted way. At that stage he did not want people to know he might have HD. He may have had to give up sport but he certainly did not give up pushing his body and brain to the limit every single day.
On 27th July 2012 London opens the 30th Summer Olympic Games. Like many others across the world I will be watching the television and hoping for a spectacular event which does us Brits proud. It is times like this I miss not having Steve with me to physically share the occasion.
Sure, I could go to family and friends. Sure, I could invite people over and make an evening of it. I don’t want to do that though. The only person I want to share with and have a conversation of sorts with is Steve. The 27th not only marks the opening of The Games, it will be exactly 18 months since Steve took his last breath.
Even before HD took hold of Steve in the physical sense, because of its hereditary nature it will have taken hold of his consciousness. He will have had years of watching relatives trying to cope with HD whether or not he knew what the illness was at that time, or its potential ramifications for him.
Now that I do not have the mental and physical stresses and strains of being his carer, it’s much easier to recognise and appreciate even more fully just how amazing he and others with HD have to be just to get through each day! I’m incredibly proud of Steve. This is for him and all those with HD or at risk.
THE REAL OLYPIANS
Eighteen months exactly, as I sit at my TV.
Eighteen months exactly since you battled with HD.
Time has passed both slow and fast, the tears still flow where cried,
Still I sit within the room, the room in which you died.
Beside me is an empty chair, where you should rightly be,
Still I feel your presence Steve, I feel you here with me.
Telly turned on; cuppa made, where once it would be wine;
I miss the social side of us, you’d raise your glass to mine.
Olympic torch burns bright tonight, to herald ‘Games’ beginning,
And many will have shattered dreams from trying but not winning.
Watching the procession; flags and Team Mates follow through.
I think of those who should be there, those with HD too.
The marathons you run each day in terms of keeping going;
The hurdles that you overcome; their heights continue growing;
The stamina you have to have to carry on all day;
The willpower you demonstrate to keep HD at bay.
The weights you lift with heavy heart, when thinking what to do;
Decisions that you wrestle with and consequences too;
The focussing on simple things, the concentration needed;
The strength to keep on shouting when the cries of help unheeded.
Handing on a baton of a gene you hope you’ll drop;
Knowing that if taken hold, this thing may never stop.
Sprinting to the finish line as illness gathers pace,
Palliative involved now, but you know what you will face.
For all those challenges each day, for all the strength required,
Olympic hopes should read these words and THEY should feel inspired!
For every person with the gene, and those whom still untold,
Just like Steve you are my heroes, YOU deserve The Gold!