Monthly Archives: October 2011

Cannon fodder

I am pleased to announce the Huntington’s Disease Association (HDA) are now stocking and selling my book. It is featured within their ‘Fact Sheets & Publications’ section under the heading ‘Other publications’. It’s all on its little ownsome suggesting they were either not sure where it fitted elsewhere or it’s special. I’d like to think the latter applies but suspect the former.

I need to speak to them about perhaps getting a bit of a better description than simply ‘Poems about HD’ though. I know if I were Joe Blog I’d be tempted to bypass that particular link were I not into HD poetry and looking for information on the Fact Sheets page. My other version is on the site’s Bookshop section by the way. They mean well and I am grateful whatever happens.

One of the good things about Self-Publishing is I am able to get copies at cost price where, after all, the contract is basically a glorified printing service. On that basis I sort out supplies and then mark up the production and P&P costs by adding £1 per copy as the profit element.

The pound extra is actually not really true profit as it goes towards trying to recoup the initial publishing costs anyway. However, we have a win-win situation. The HDA are able to stock and sell at a cheaper price than they would have if stocking from Amazon and I am not making a loss either and getting wider public exposure. I lose out where Amazon Ranking doesn’t reflect sales not made through the UK arm but that’s a small price to pay. I’m never exactly likely to get anywhere near their top 100 after all.

I would love to generate more reviews on the selling websites but I can understand my audience have enough of the brown stuff in their lives without adding extra work by going on-line and commenting (plus I’d rather have just a handful of reviews than a heaped pile load of bad ones lol).

I am, however, very encouraged that my audience are coming forward in places like Facebook and talking about it. I quote:

‘Just thought I’d let you know I got your book in the mail yesterday from Amazon. A friend [name deleted] recommended it to me and so far I really like it. I’ve read chapter 1 and part of 7. That is good stuff Trish, and thank you for writing it.’

This particular comment means more to me where the friend made contact recently via the HDA Message Board. Here is part of the text written on the Board:

‘……You have an uncanny ability to be able to put yourself in someone’s shoes. ………….  Your poetry is really beautiful and I have always loved it. Long before I signed up for an account I was sneaking in here to read your posts.’

It’s very satisfying to know poetry can speak to people and for people. The person who wrote the comment knows HD from a carer’s perspective and that of being someone at risk but possibly symptomatic. Unfortunately the stress of being at risk can bring out symptom like characteristics even if the gene is not actually present.

Where Section 7 of my book speaks of the darker side of the disease (not that there is what we could call a lighter side) I have always been worried about my audience being unhappy about the bad stuff not being glossed over. Do they really need to read about my considering euthanasia?

There have been no complaints about my being too dramatic or too graphic so far and I’m conscious of the fact there will always be a bit of resentment that my husband’s family glossed over the bad stuff.

When Hubs became symptomatic I felt like I was in a war zone at times. I’d been sent to the front line with just a bayonet and no description of the territory or which angle the enemy might be firing from. A tin hat and a flack jacket would have been appreciated instead of simply being pushed forward into No Mans Land while they sat in the Bunker shouting something like “You’re doing a great job… keep going forward.. we are all right behind you… by about 50 miles”.

On the other hand, had I known what I was taking on would I have done a runner? I nearly did several times and had plenty of opportunity to I can assure you. I’m glad I stayed though.  I couldn’t have lived with myself had I been a deserter and left Hubs to the enemy all on his own.