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Old 13-08-17, 09:47 PM   #1
jaq
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Location: West Yorks
Posts: 913
Default Buttons

Every #sybilontour I have made has had a button on her . Here's a poem on the theme of buttons !

Buttons

The first was black , taffeta not jet for mourning, not yet .
It nestled on her throat,the Victorian dress of the great grandmother
I'd seen on the photo , her six girls at her feet
Before Huntington's

Second was white ,poplin , tiny
From the pinafore my grandmother wore in the photo.
Edith, Surrounded by her sisters Gladys , Gertie , Flo Annie and Elsie
Before Huntington's before lovers

Third paint flecked from the smock my grandfather wore to sketch
His deft touch with pen and ink, water colour ,oils
Holding the brush
Illuminating landscapes and once a portrait of Edith , his lover
Before Huntington's

Button Blue , nylon , gingham
From the overall she always wore Edith my Nana
Working for her husband who could work no more
Working for her children and grandchildren , for hope .
They might escape Huntington's

The brightest button in the box twinkles
Light bounces , starbursts from the silver thread
From a dancing shoe , a twirling dress , a bag dazzling with beads and buttons
Before I knew you ,before you began a dance of a different kind
Before Huntington's.

A Leather button brown smudged with oil
A petrol head before we dreamed the noun .
The Vauxhall victor with bench seat
That new car smell mixed with driving gloves.
Up hill , down dale, countryside and coast
Picnics at the roadside
Before ,blue lights flashing a license lost
Before Huntington's

No new buttons in the box
With two degrees you might have been a professor with buttoned gown .
Maybe a blue or pink mother of pearl perfect , pure
From baby clothes , boys and girls the family you might have had
Before Huntington's

Your trousers now elastic
Fastenings Velcro
You have no use for buttons
Your fingers clumsy,awkward ,never still.
Memories are fragile, fleeting fractured
And a life before Huntington's
Precious like the buttons in the box .
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Old 13-08-17, 11:22 PM   #2
Crystal
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Join Date: Sep 2015
Posts: 212
Default Re: Buttons

Quote:
Originally Posted by jaq View Post
Every #sybilontour I have made has had a button on her . Here's a poem on the theme of buttons !

Buttons

The first was black , taffeta not jet for mourning, not yet .
It nestled on her throat,the Victorian dress of the great grandmother
I'd seen on the photo , her six girls at her feet
Before Huntington's

Second was white ,poplin , tiny
From the pinafore my grandmother wore in the photo.
Edith, Surrounded by her sisters Gladys , Gertie , Flo Annie and Elsie
Before Huntington's before lovers

Third paint flecked from the smock my grandfather wore to sketch
His deft touch with pen and ink, water colour ,oils
Holding the brush
Illuminating landscapes and once a portrait of Edith , his lover
Before Huntington's

Button Blue , nylon , gingham
From the overall she always wore Edith my Nana
Working for her husband who could work no more
Working for her children and grandchildren , for hope .
They might escape Huntington's

The brightest button in the box twinkles
Light bounces , starbursts from the silver thread
From a dancing shoe , a twirling dress , a bag dazzling with beads and buttons
Before I knew you ,before you began a dance of a different kind
Before Huntington's.

A Leather button brown smudged with oil
A petrol head before we dreamed the noun .
The Vauxhall victor with bench seat
That new car smell mixed with driving gloves.
Up hill , down dale, countryside and coast
Picnics at the roadside
Before ,blue lights flashing a license lost
Before Huntington's

No new buttons in the box
With two degrees you might have been a professor with buttoned gown .
Maybe a blue or pink mother of pearl perfect , pure
From baby clothes , boys and girls the family you might have had
Before Huntington's

Your trousers now elastic
Fastenings Velcro
You have no use for buttons
Your fingers clumsy,awkward ,never still.
Memories are fragile, fleeting fractured
And a life before Huntington's
Precious like the buttons in the box .
Hi Jaq

Your poem is so poignant. I always feel that putting thoughts and feelings into poetry has such an impact on the reader..... and gives an insight and release of emotions.... by the writer... all hidden away at times. Maybe no more.......perhaps an idea for a new 'poetry thread'!
Thank-you for sharing this very moving poem.

Crystal
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Old 14-08-17, 02:03 PM   #3
jaq
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Default Re: Buttons

We have our poet in residence in Trish B I wrote something years ago and posted on here but dunno where .

The Scott hda are having a creative writing competition but it has to be 24 lines or fewer so this would be too long .
Worth thinking about for people who have been writing xxxx
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Old 15-08-17, 09:16 AM   #4
shiraz
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Location: Merseyside
Posts: 873
Default Re: Buttons

I love this Jaq. A family history told through buttons. It's fab
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Old 16-08-17, 09:39 AM   #5
Brian2001
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Default Re: Buttons

Quote:
Originally Posted by jaq View Post
Every #sybilontour I have made has had a button on her . Here's a poem on the theme of buttons !

Buttons

The first was black , taffeta not jet for mourning, not yet .
It nestled on her throat,the Victorian dress of the great grandmother
I'd seen on the photo , her six girls at her feet
Before Huntington's

Second was white ,poplin , tiny
From the pinafore my grandmother wore in the photo.
Edith, Surrounded by her sisters Gladys , Gertie , Flo Annie and Elsie
Before Huntington's before lovers

Third paint flecked from the smock my grandfather wore to sketch
His deft touch with pen and ink, water colour ,oils
Holding the brush
Illuminating landscapes and once a portrait of Edith , his lover
Before Huntington's

Button Blue , nylon , gingham
From the overall she always wore Edith my Nana
Working for her husband who could work no more
Working for her children and grandchildren , for hope .
They might escape Huntington's

The brightest button in the box twinkles
Light bounces , starbursts from the silver thread
From a dancing shoe , a twirling dress , a bag dazzling with beads and buttons
Before I knew you ,before you began a dance of a different kind
Before Huntington's.

A Leather button brown smudged with oil
A petrol head before we dreamed the noun .
The Vauxhall victor with bench seat
That new car smell mixed with driving gloves.
Up hill , down dale, countryside and coast
Picnics at the roadside
Before ,blue lights flashing a license lost
Before Huntington's

No new buttons in the box
With two degrees you might have been a professor with buttoned gown .
Maybe a blue or pink mother of pearl perfect , pure
From baby clothes , boys and girls the family you might have had
Before Huntington's

Your trousers now elastic
Fastenings Velcro
You have no use for buttons
Your fingers clumsy,awkward ,never still.
Memories are fragile, fleeting fractured
And a life before Huntington's
Precious like the buttons in the box .

Beautiful...
__________________
'nothing will ever be the same...08/10/2009>'
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Old 17-08-17, 06:29 PM   #6
Allan
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Join Date: Sep 2012
Location: Hastings, East Sussex, UK
Posts: 1,098
Default Buttons, Sybil and - a few words ...

.
Sybil made a moderate impact when her first HD Awareness video appeared [Sybil on Tour]. It seems, though, that her second video will have a much greater global impact leading to future sell-out tours. Early design, editing and production days at the mo though ...

Whilst Jaq glides gently and lovingly through the “Buttons” of her family life my entry into the unknown world of HD is, in the main, descriptive of the genetic and scientificly monstrous cock up, as follows:


Hurt! I am hurt

How could this happen?
How many times must I think - CAG 35, what’s that?
How can I possibly imagine my son as CAG 56?

I see a young boy … full of fun and joy.
I see a smile that will break many hearts.
I see his sporting activities with pride.
I see a young boy … alive for the next new day.

My anger is ever greater by the day.
My anger is directed at this god-awful disease.
My rage is immense, it fills my days - and nights.
My need is to seek an understanding.

I understand the science, the intricate chemistry
But I fail to understand - why?
Why me? Why him?
Why? Why? Why?

So, there’s a genetic error.
So, there’s a DNA fault.
So, his genes are tumbling in the washing machine.
So, there’s a life coming to a halt.

I look back with pleasure.
I look forward with hope.
Today - I fight the system.
I hate the words that HD stands for.

Test it!
… the mutant huntingtin gene.
Edit it!
… the mutant huntingtin gene.
Delete it!
… the mutant huntingtin gene.
Give him a chance!
… without the mutant huntingtin gene

Now! B4 it’s too late …

I have laughed in the rain and …
I have loved in the sun.
I have travelled by land and ...
I have flown through clouds.
I have lived in towns and cities and ...
I now exist in the shadow of the Valley of Death.
If I could live my life again I’d thrive …
Without that mutant huntingtin gene.

Hurt! I am truly hurt.


Discombobulated
  1. Perseverance is Obsessive-Compulsive Behaviour
  2. Perseverance is Obsessive-Compulsive Behaviour
  3. Perseverance is Obsessive-Compulsive Behaviour
  4. Perseverance is Obsessive-Compulsive Behaviour
  5. Perseverance is Obsessive-Compulsive Behaviour
  6. Perseverance is Obsessive-Compulsive Behaviour
  7. Perseverance is Obsessive-Compulsive Behaviour
  8. Perseverance is Obsessive-Compulsive Behaviour
  9. Perseverance is Obsessive-Compulsive Behaviour
  10. Perseverance is Obsessive-Compulsive Behaviour
  11. Perseverance is Obsessive-Compulsive Behaviour
  12. Perseverance is Obsessive-Compulsive Behaviour
  13. Perseverance is Obsessive-Compulsive Behaviour
  14. Perseverance is Obsessive-Compulsive Behaviour
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  16. Perseverance is Obsessive-Compulsive Behaviour
  17. Perseverance is Obsessive-Compulsive Behaviour
  18. Perseverance is Obsessive-Compulsive Behaviour
  19. Perseverance is Obsessive-Compulsive Behaviour
  20. Perseverance is Obsessive-Compulsive Behaviour
  21. Perseverance is Obsessive-Compulsive Behaviour
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  28. Perseverance is Obsessive-Compulsive Behaviour
  29. Perseverance is Obsessive-Compulsive Behaviour
  30. Perseverance is Obsessive-Compulsive Behaviour
  31. Perseverance is Obsessive-Compulsive Behaviour
  32. Perseverance is Obsessive-Compulsive Behaviour
  33. Perseverance is Obsessive-Compulsive Behaviour
  34. Perseverance is Obsessive-Compulsive Behaviour
  35. Perseverance is Obsessive-Compulsive Behaviour
  36. Perseverance is Obsessive-Compulsive Behaviour
  37. Perseverance is Obsessive-Compulsive Behaviour
  38. Perseverance is Obsessive-Compulsive Behaviour
  39. Perseverance is Obsessive-Compulsive Behaviour
  40. Perseverance is Obsessive-Compulsive Behaviour
  41. Perseverance is Obsessive-Compulsive Behaviour
  42. Perseverance is Obsessive-Compulsive Behaviour
  43. Perseverance is Obsessive-Compulsive Behaviour
  44. Perseverance is Obsessive-Compulsive Behaviour
  45. Perseverance is Obsessive-Compulsive Behaviour
  46. Perseverance is Obsessive-Compulsive Behaviour
  47. Perseverance is Obsessive-Compulsive Behaviour
  48. Perseverance is Obsessive-Compulsive Behaviour
  49. Perseverance is Obsessive-Compulsive Behaviour
  50. Perseverance is Obsessive-Compulsive Behaviour
  51. Perseverance is Obsessive-Compulsive Behaviour
  52. Perseverance is Obsessive-Compulsive Behaviour
  53. Perseverance is Obsessive-Compulsive Behaviour
  54. Perseverance is Obsessive-Compulsive Behaviour
  55. Perseverance is Obsessive-Compulsive Behaviour
  56. CAG Repeat Count - that’s my boy.


I’m feeling discombobulated again

I’m ok - but
… I drop things,
… I forget things,
… I constantly stumble,
… I sometimes get angry.

This is because the huntingtin gene produces
… a protein that has a repetitive sequence
… called Polyglutamine.
… I have Huntington’s disease with mutated proteins
… in which the CAG sequence is way too long.

But it still remains unclear how exactly this mutation causes the protein
… to misbehave,
… to clump together,
… to trigger the degeneration and death of neurons in my brain.


This is the reason for the way I am
… My movement disorder,
… My cognitive decline and
… My freaking behavioural issues.

Doctors give me various pills to
… help stabilise some of my symptoms.
These are not specific HD medications
… just regular pharmaceutical therapies
… that may or may not do the trick.

My glazed stare
… is it outward?
… is it inward?
Am I searching for something
… out there?
… in my head?

Where has it gone
… that thought?
… that idea?
… that, that, that ……

I took my medication last night but
… I didn’t sleep well
… I went to bed at 3 am
… I didn’t sleep well
… I got up at 6 o’clock
… I hadn’t slept well
… I went back to bed
… I didn’t sleep well
… I got up at 2 o’clock
… I hadn’t slept well

… I’m always in a discombobulated state of existence.


.
__________________
New Day; New Outlook; New Challenges; New Possibilities; New Outcomes; New Successes
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Old 17-08-17, 11:31 PM   #7
Crystal
Approved Member
 
Join Date: Sep 2015
Posts: 212
Default Re: Buttons, Sybil and - a few words ...

Quote:
Originally Posted by Allan View Post
.
Sybil made a moderate impact when her first HD Awareness video appeared [Sybil on Tour]. It seems, though, that her second video will have a much greater global impact leading to future sell-out tours. Early design, editing and production days at the mo though ...

Whilst Jaq glides gently and lovingly through the “Buttons” of her family life my entry into the unknown world of HD is, in the main, descriptive of the genetic and scientificly monstrous cock up, as follows:


Hurt! I am hurt

How could this happen?
How many times must I think - CAG 35, what’s that?
How can I possibly imagine my son as CAG 56?

I see a young boy … full of fun and joy.
I see a smile that will break many hearts.
I see his sporting activities with pride.
I see a young boy … alive for the next new day.

My anger is ever greater by the day.
My anger is directed at this god-awful disease.
My rage is immense, it fills my days - and nights.
My need is to seek an understanding.

I understand the science, the intricate chemistry
But I fail to understand - why?
Why me? Why him?
Why? Why? Why?

So, there’s a genetic error.
So, there’s a DNA fault.
So, his genes are tumbling in the washing machine.
So, there’s a life coming to a halt.

I look back with pleasure.
I look forward with hope.
Today - I fight the system.
I hate the words that HD stands for.

Test it!
… the mutant huntingtin gene.
Edit it!
… the mutant huntingtin gene.
Delete it!
… the mutant huntingtin gene.
Give him a chance!
… without the mutant huntingtin gene

Now! B4 it’s too late …

I have laughed in the rain and …
I have loved in the sun.
I have travelled by land and ...
I have flown through clouds.
I have lived in towns and cities and ...
I now exist in the shadow of the Valley of Death.
If I could live my life again I’d thrive …
Without that mutant huntingtin gene.

Hurt! I am truly hurt.


Discombobulated
  1. Perseverance is Obsessive-Compulsive Behaviour
  2. Perseverance is Obsessive-Compulsive Behaviour
  3. Perseverance is Obsessive-Compulsive Behaviour
  4. Perseverance is Obsessive-Compulsive Behaviour
  5. Perseverance is Obsessive-Compulsive Behaviour
  6. Perseverance is Obsessive-Compulsive Behaviour
  7. Perseverance is Obsessive-Compulsive Behaviour
  8. Perseverance is Obsessive-Compulsive Behaviour
  9. Perseverance is Obsessive-Compulsive Behaviour
  10. Perseverance is Obsessive-Compulsive Behaviour
  11. Perseverance is Obsessive-Compulsive Behaviour
  12. Perseverance is Obsessive-Compulsive Behaviour
  13. Perseverance is Obsessive-Compulsive Behaviour
  14. Perseverance is Obsessive-Compulsive Behaviour
  15. Perseverance is Obsessive-Compulsive Behaviour
  16. Perseverance is Obsessive-Compulsive Behaviour
  17. Perseverance is Obsessive-Compulsive Behaviour
  18. Perseverance is Obsessive-Compulsive Behaviour
  19. Perseverance is Obsessive-Compulsive Behaviour
  20. Perseverance is Obsessive-Compulsive Behaviour
  21. Perseverance is Obsessive-Compulsive Behaviour
  22. Perseverance is Obsessive-Compulsive Behaviour
  23. Perseverance is Obsessive-Compulsive Behaviour
  24. Perseverance is Obsessive-Compulsive Behaviour
  25. Perseverance is Obsessive-Compulsive Behaviour
  26. Perseverance is Obsessive-Compulsive Behaviour
  27. Perseverance is Obsessive-Compulsive Behaviour
  28. Perseverance is Obsessive-Compulsive Behaviour
  29. Perseverance is Obsessive-Compulsive Behaviour
  30. Perseverance is Obsessive-Compulsive Behaviour
  31. Perseverance is Obsessive-Compulsive Behaviour
  32. Perseverance is Obsessive-Compulsive Behaviour
  33. Perseverance is Obsessive-Compulsive Behaviour
  34. Perseverance is Obsessive-Compulsive Behaviour
  35. Perseverance is Obsessive-Compulsive Behaviour
  36. Perseverance is Obsessive-Compulsive Behaviour
  37. Perseverance is Obsessive-Compulsive Behaviour
  38. Perseverance is Obsessive-Compulsive Behaviour
  39. Perseverance is Obsessive-Compulsive Behaviour
  40. Perseverance is Obsessive-Compulsive Behaviour
  41. Perseverance is Obsessive-Compulsive Behaviour
  42. Perseverance is Obsessive-Compulsive Behaviour
  43. Perseverance is Obsessive-Compulsive Behaviour
  44. Perseverance is Obsessive-Compulsive Behaviour
  45. Perseverance is Obsessive-Compulsive Behaviour
  46. Perseverance is Obsessive-Compulsive Behaviour
  47. Perseverance is Obsessive-Compulsive Behaviour
  48. Perseverance is Obsessive-Compulsive Behaviour
  49. Perseverance is Obsessive-Compulsive Behaviour
  50. Perseverance is Obsessive-Compulsive Behaviour
  51. Perseverance is Obsessive-Compulsive Behaviour
  52. Perseverance is Obsessive-Compulsive Behaviour
  53. Perseverance is Obsessive-Compulsive Behaviour
  54. Perseverance is Obsessive-Compulsive Behaviour
  55. Perseverance is Obsessive-Compulsive Behaviour
  56. CAG Repeat Count - that’s my boy.


I’m feeling discombobulated again

I’m ok - but
… I drop things,
… I forget things,
… I constantly stumble,
… I sometimes get angry.

This is because the huntingtin gene produces
… a protein that has a repetitive sequence
… called Polyglutamine.
… I have Huntington’s disease with mutated proteins
… in which the CAG sequence is way too long.

But it still remains unclear how exactly this mutation causes the protein
… to misbehave,
… to clump together,
… to trigger the degeneration and death of neurons in my brain.


This is the reason for the way I am
… My movement disorder,
… My cognitive decline and
… My freaking behavioural issues.

Doctors give me various pills to
… help stabilise some of my symptoms.
These are not specific HD medications
… just regular pharmaceutical therapies
… that may or may not do the trick.

My glazed stare
… is it outward?
… is it inward?
Am I searching for something
… out there?
… in my head?

Where has it gone
… that thought?
… that idea?
… that, that, that ……

I took my medication last night but
… I didn’t sleep well
… I went to bed at 3 am
… I didn’t sleep well
… I got up at 6 o’clock
… I hadn’t slept well
… I went back to bed
… I didn’t sleep well
… I got up at 2 o’clock
… I hadn’t slept well

… I’m always in a discombobulated state of existence.


.
Hi Allan.......new day, new outlook, new words, new poetry, new insight, new(?) anger and hurt, new poignancy, new impact of thoughts and feelings laid bare.
Powerful reading......and powerful understanding of everything those two words (letters) stand for. Thank-you for this.

Crystal
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Old 18-08-17, 07:13 PM   #8
Trish
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Default Re: Buttons

Beautiful poem Jaq.

Stirring and powerful stuff Allan.

There's been a few poems in here over the years, not all by me I hasten to add. The SHA are very proactive in encouraging creativity as part of awareness. I may enter their poetry comp but have to think about it a bit more. I suspect the world has seen enough of my poetry. Then again... I couldn't help but feel inspired by your poem Jaq to offer up a fastening themed poem of my own. Hope you like

Ties

Smartness of your presentation;
Crisp white shirt, sharp suit and tie;
Focussed with determination;
Confidence that caught my eye.
Few years later cracks are showing;
Tie less centred, suit now loose;
Seeds of fear deep sown and growing;
Roots entwining like a noose.
Suits and ties exchanged for jeans now;
Not job worthy, stripped of role;
Lace tied shoes replaced by slippers;
Dignty torn from your soul.
All the ties that will define you;
Tied by hand, now pulled apart;
Come undone though one will bind you;
Tight, secured, tied to my heart.
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Old 18-08-17, 08:47 PM   #9
jaq
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Default Re: Buttons

Alan and Trish both so powerful so many emotions and at the bottom of it all such a profound sense of loss xxx
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Old 19-08-17, 07:42 AM   #10
banda
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Default Re: Buttons

Simply stunning...poignant and beautiful all. xx
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