Monthly Archives: July 2011
Tomorrow (27/7/2011) will be six months since Steve died.
Since releasing the book I haven’t done much on the poetry front but I didn’t want to let the day pass without composing a poem for Steve…
Been six long months since you went away,
And I think about you as I go through my day,
It feels like I’ve sobbed a million tears,
And that we were robbed of a lot of good years.
But in all honesty any years going by,
Would have made you more weaker, and still you would die,
And the future look bleaker and still I would cry,
And I mustn’t begrudge you your peace…
I remember you wanted release…
So I have to remember, though it don’t seem right,
You were tired of this world; you were tired of the fight.
Played our CD each day, with the snaps of us two,
And the smiles on our faces hide bitterness too,
So I mustn’t begrudge you your peace…
Must remember you needed release…
Got my list of the things that I wanted to do,
Wrote the book, planted tree, at last things I’ve seen through,
But they don’t mean a thing without you here to see,
They have been done for you and not only for me,
See I haven’t forgotten bout you…
Was the very least that I could do…
Yeah I get through each day now as best as I’m able,
I talk to your casket that sits on your table,
I know that I look now as if I’m unstable,
Who cares if unstable is true,
It’s the way that I cope without you…
And I gave up the booze and the other stuff too,
That I once used for comfort, to help me get through,
And the ironic part is that now I am free,
All those things that I craved are no longer for me,
I won’t know if they hadn’t been there,
Would I given you much better care?
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,
Coz the last thing I ever could do,
Is forget about how it took you.
And the last thing I ever will do,
Is forget what HD did to you!
When I first embarked upon expanding the original book – ‘Curse in Verse’ – I was always worried I would be going too far in terms of stepping outside what is comfortable to read about Huntington’s disease.
Curse in Verse and Much More Worse was always going to be a risky venture. I know I can justify and verify everything I have written in it but if my fellow HD carers felt it was giving a totally wrong impression, or if the Huntington’s Disease Association (HDA) felt it was too graphic or even misleading in any way to the point of being harmful, I would have to pull the book. The book has always been an exercise in wanting to help understand the illness and the carers and sufferers alike. Also, I wanted Steve to be associated with something for good, not bad.
These last few weeks I have been getting nothing but positive feedback 🙂
The HDA e-mailed me with the following:
‘…completely bowled over by it! It is funny, thought provoking, emotional and inspiring all in one.
I can see the value of using some quotes from it when doing training, would you be happy with that (acknowledging you and the book as source of course).’
As you can imagine I am very happy the HDA are keen on the book and to be cited for training is a huge honour indeed!
I would rather Steve hadn’t been cursed with HD but it helps to be able to talk to him (photos and casket of ashes pride of place in our lounge) and tell him “see sweetheart? You didn’t die in vain. You are helping other people and won’t be forgotten!”
I am also happy those we have tried to reach out to are also making comments now and the book is helping individuals. One of my Friends on Facebook took a copy to show her counsellor who doesn’t seem to grasp how grinding HD can be.
Last, but not least, I finally got that elusive review on Amazon. 5 stars given and some very generous comments.
‘I thoroughly recommend this book if you want to really grasp the impact of a ruthless genetic brain disorder on individuals and families, and how people deal with the challenges it poses. The book is so well written with informative explanations and discussions heading up thoughtful, insightful, sometimes cutting, sometimes witty poetry.
This doesn’t have to be read cover to cover in one go, but be careful if pushed for time- you might find you can’t put it down. It can be dipped in to- I am doing that and I find after taking on board one short poem, I have so much to absorb from it and think about. It’s deep and provocative, but the style is light, and very digestable, and enjoyable. It’s definately not doom and gloom, it is most uplifting and sometimes hilarious— I love ‘The Dyno Rod’… so true, so funny.
It is about living with Huntington’s disease, but it is about dealing with whatever life throws at you, even if actually, you have no personal connection to HD. If you do, this could be a great aid to get you through. Some tricky topics are faced— Trish is not afraid to consider sticky issues such as animal experimentation; difficulties for individuals surrounding being gay; being HIV positive; problems with insurance… OK, enough from me. My favourite at the moment is ‘The Magic of Music’… how friends find that from a deteriorating prematurely old frame, music draws out their old mate. Enjoy the read. ‘
In case you were wondering… No it wasn’t me using Hub’s name. I have it on good authority the author is another HD community authority – Steve Smith.
Steve is a writer himself, alongside being a Nurse and lecturer on HD and other neurological conditions. His latest book is here:
And in his spare time he writes and performs music and does fundraising:
Inspirational… truly inspirational…