This is the mythological beast the Hydra, slain by Hercules. It compares to Huntington’s Disease because the illness also has many heads, attacking a patient’s mobility, cognitive understanding, emotions, diets and immune systems – in fact, almost every facet of human health and well-being.
The title poem of my Huntington Hydra poetry collection concludes:
‘No-one is ultimately alone or deserted
while scientists work to defeat the Hydra
and like multiples of Hercules, thousands will fight
to slash the heads down one at a time
until the beast is broken and we are all free’.
Expressions of sympathy and support, Facebook ‘likes’, thumbs up and smiles, all of them I appreciate and it is heartening to know posts are being seen and noted. But I also hope that people, however they feel about poetry and whatever sufferings may have been inflicted on them in schools and colleges in its name, will find their way to actually getting hold of a copy of the book and join those thousands who are fighting the Hydra. I ain’t no Hercules, and neither’s the guy I’m caring for, but if we can put together as many heads as this thing has got, maybe the day is still coming when we will all be free of it, whatever dark secrets are lurking in our children’s genes.
Thanks to the people who’ve been ‘liking’ my posts on Facebook concerning the new poetry book The Huntington Hydra, mostly concerned with the experience my partner and I have had with Huntington’s Disease before and since his diagnosis in 2016. I should say to anyone who is prepared to go on and acquire the book that the publisher’s site, www.therecusant.org.uk, has two versions; simply press the Adobe Flash Player button for the more colourful version. However, the pink and yellow cover of the HH book is visible enough on both, and thanks in advance to those who obtain the book and donate to the fight against Huntington’s. As you can imagine, this is more than just a book to my partner and I; it is one way of hitting back.
Writing competitions which publish anthologies of the winners have always been favourites of mine; to stand out from usually hundreds of entries is encouraging, but to see the piece in print is so much the better. 2019 is starting very nicely in that respect; having succeeded in getting into the forthcoming Celebration of Protest anthology compiled by the university-supported GRIST magazine , http://mhm.hud.ac.uk/grist/ with The Unplayable, about the continuing homophobia of professional football, another hit has already come along.
The organisation Audio Arcadia, www.audioarcadia.com which not only publishes pieces in an anthology but also audio versions, has selected The Finishing Line for their anthology. This is about a man recalling his late teens and his charity worker father disappearing about being caught up in the vicious war in the Democratic Republic of the Congo in 1997.
Two anthology appearances before the end of January isn’t bad going, and they’re both stories which I took a good deal of time and trouble over. The competition in the writing world is fierce, and every success is worked for.
I hope January isn’t being too unkind wherever you are, and it does at least draw us nearer to spring!
My partner is hanging in there, but that toll is beginning to be taken. We have agreed to publish the anthology, to enable further donations to the Huntington’s Disease Association and continue to raise awareness of the illness. And no-one should be in any doubt; yes, research is progressing towards a ‘gene-silencing’ drug, but it isn’t here yet and probably won’t be for at least another three or four years. In the meantime, for thousands of patients of all ages all over the world, there remains no cure and no treatment.
My writing didn’t start with the appearance of HD in our lives; I had established a record of success in poetry and short fiction competitions and been extensively published in print and online before 2016, so I’m happy to claim some literary worth for the work in addition to the causes it serves, which I hope some reviews will reflect.
I will be writing individually to family and friends both inside and outside the writing world to ask for their support. The book will retail at £8 on the publisher’s site and I will pass that address on when it is available, but in advance, I don’t think the family and friends concerned include people who would obtain a book and then not donate, so I’m inviting anyone who would like to receive a signed thank you copy or copies of the book to send me a message; in most cases, I will know your address anyway, but include it just in case. I will post the book to you with my signed thanks and ask you to donate to the Huntington’s Disease Association at www.hda.org.uk , quoting the book if you can.
My second project, a short fiction collection of ‘rites of passage’ stories called ‘Fallen Eagles’, will follow shortly after the poetry book. I will come back to it nearer the date, but this one will be in aid of the Huntington’s Disease Youth Organisation, www.hdyo.org. HD is not an age-specific illness, and contracting it in youth can mean an even more intense and disruptive experience of it. If anyone would also like to order similarly signed copies of it when it appears, please let me know as well.
This is unlikely to be the year when HD is beaten, but it will be a year when we can continue the fight against it, with a little help from our friends.
Number nine in the series is Broos Noos below, a festive episode, though it’s not easy to get the festive mood this year. Perhaps by this time next year, the major Brexit issues will be settled and we can go into the celebrations with a little less anxiety and division crackling around, though I don’t think anyone’s holding their breath on that one. The thing is beginning to have a kind of aura of eternity about it, as if we’ve all been sentenced to wrestle on in futility ad infinitum like ferrets in a sack.
However, I have one good reason to be cheerful at the moment, and that is completed proofs of my poetry collection ‘The Huntington Hydra’, which will emerge in January and, I hope, contribute to raising awareness of the illness and funds for the Huntington’s Disease Association, www.hda.org.uk , who have provided a ‘foreword’ for the book describing their role and how they seek to help HD patients, carers and families.
The book’s subject matter is not, in the main, very cheerful because it can’t be, but bringing the issues into the light concerning the effects of a still incurable illness can only be useful for those suffering it and the people who care for them.
Not all the poems relate to HD; some of them are about the places Anthony and I have visited and the subjects which have concerned me over recent times. I hope everyone who looks at my blog messages will consider supporting the book, and when it is published and available, the details and availability links will be at www.bruceleonardharris.com
Whatever you’re doing or whoever you’re with, all the very best to you and yours for a peaceful, enjoyable Christmas and a happy and prosperous New Year.
It’s difficult to understand, after yesterday,
the naming preferences of P.M. Mrs. May;
to call her ‘bloody difficult’ is apparently alright;
to call her ‘stupid’ is asking for a fight.
As her government is taking us ever faster
to the teetering edge of economic disaster,
other expressions now quite often heard
would by comparision make that a milder word.
President Shout’s current service to his nation
is to work on increasing the prison population.
Seeing what’s happening, he might just start to think
that his entire administration will finish up in clink
and he himself become the chief prison bore
shouting ‘lock her up’ from behind his cell door.
And in Paris, Jumping Jack Macron Flash
believes ‘Joyeuese Noel is a gas, gas, gas!’
For a Tory pantomime, Mother Brexit will do
with so many little options she doesn’t know what to do
or maybe Cinderella, with a royal coach that stalls
on its way to all the glittering Euro-balls.
Soon be 2019, and that’s maybe not so bad
with the promise of a brand New Year to be had
but paraphrasing Tiny Tim, behind our Christmas fun,
what we should be saying is ‘God help us, everyone!’
I’m delighted to record that I have an American reader, or at least one I know about, and what’s also pleasurable is that the reader in question is an accomplished writer herself, with a formidable collection of work at www.susantepper.com To be read across the Atlantic is much appreciated, and as Susan now has her copy of ‘The Guy Thing’, I will also be sampling her writing. We are both contributors to the Irish magazine www.thelinnetswings.org, and it says something about the reach of LW that it can claim a truly transatlantic readership.
While on the subject of our cousins across the Pond, it is a regrettable but unavoidable fact that Huntington’s Disease spreads its deadly tentacles all around the world, and the U.S. is no exception. However, organisations fighting it are also international, and one of the biggest and brightest is the Huntington’s Disease Society of America , https://hdsa.org. I’d just like to express my congratulations and admiration for their work, as one whose own life has been invaded by HD as a result of my partner’s illness.
Returning to the Linnet’s Wings, I’m happy to say that another piece from The Guy Thing collection, ‘The Telegram Boy’, will shortly appear in their forthcoming issue. It is a story particularly appropriate for 2018 and the centenary of the First World War, and it sets out to highlight, as well as I can from such a distance of time and circumstance, the experiences of those guys who were too old or too young to actually do the fighting themselves.
More Broos Noos nonsense below. With the maelstrom swirling around us, I think many of us are not sure whether to laugh or cry, but I know which one I prefer, especially where I am at the moment.
Inciting the people and stirring the mobs,
rich Tories aren’t going to lose their jobs
and maintain a vision of Britain whose view is
based on the country in the crisis of Suez.
How they love to torment their own Theresa,
to undermine her, twist her and squeeze her.
Soon now, they’ll be hearing a very old song;
the past is for the old; the future’s for the young.
Over in Paris, we see the evolution
of a sort of Hi-Vis revolution
aimed at helping those in poverty
by setting fire to people’s property.
Another ex-Trump man gets his face on the telly,
the new ex-Chief of Staff John Kelly
as we all sit and watch, boggling our minds at
one more ship deserting a sinking rat.
Another competition success to be reported, I’m glad to say, and perhaps a few more might appear before Christmas. It’s an impossible business to predict which ones will do something, since competitions and judges can be so different, but my ‘Paris by Night’ piece, on a romantic theme with a darker undercurrent, has managed a third place and prize in the Erewash Writers’ Annual Competition and is now displaying itself on their site at
My poetry collection, ‘The Huntington Hydra’, due to be published in early 2019, now has a foreword piece from the Huntington’s Disease Association, www.hda.org.uk , and ‘Fallen Eagles’, the short fiction collection of ‘rites of passage’ stories due out at a similar time will be introduced by Catherine Martin, the Chief Executive of the Huntington’s Disease Youth Organisation, https://en.hdyo.org/
Final proof readings coming up in both cases, which will be something to do apart from eating, drinking and watching various festive bilge on television!
Speaking of which, latest Broos Noos below, which does manage to have at least a first verse which isn’t about Brexit.
Like a twenty-first century Emperor Nero
President Shout is the climate’s anti-hero;
he’s ducking and diving, twisting and turning,
while all around him, the planet is burning.
Yet another last chance in Poland today
for our tottering species to find some way
to pause at the least, and even reverse
the one-way road of the climate change curse.
And in our festive home, Brexit rolls along,
like an ever-repeating annoying old song
and we wrestle on with eternal debate,
seemingly resigned to our miserable fate.
Families will soon be getting together
snarling ‘leave’ or ‘remain’ at each other as ever
and to the merry sound of the jingling bells
we will all slug it out in our Brexitive hells.
A few updatings before yet another silly bit of news rhyming in the Broos Noos series, which is good for reminding me that writing doesn’t always have to be serious or deeply meaningful; in fact, it’s better if it isn’t for at least some of the time.
The GRIST writing organisation at the University of Huddersfield have recently held a competition under the title ‘Trouble and Strife: A Celebration of Protest’, the idea being that the best entries will be included in an anthology. My contribution, ‘The Unplayable’, centred on the theme of gay professional footballers, or rather the lack of them, is to be included in the collection, I’m pleased to say, especially as it’s a subject worth an airing as far as I’m concerned.
Two of the poems on the influence of Huntington’s Disease in the lives of my partner and I, ‘Us’ and ‘The Undefeated’, are also to be included in the Momaya Press 2018 Annual Poetry Review, and thereafter will go into the anthology ‘The Huntington Hydra’, to be published in early 2019; more precise news on that coming up.
And so to the Noos, and why not?
We’ve seen more final Brexit crunches
than the Queen has given gala lunches;
such sharp division hasn’t been seen
since Marmite entered our British cuisine
and now Treezer’s going nationwide
to get the country on her side,
the dour remainers, the diehard leavers
and the who gives a shit non-believers.
And Russia keeps spreading alarm and fear
by buggering around in the Ukraine and Crimea;
Ms. Nightingale’s ghost stalks the place, willing
the poor land to be free of maiming and killing
and if you’re doing research, the place not to be
is on the territory of the U.A.E.
and if you are, what you must wish for is
your Foreign Secretary will not be Boris.