In the palm of a spider’s hand
As we begin the finale of our work to rewrite the story of dementia, we’re looking back to one of the project’s most poignant publications: Gerald King’s In the palm of a spider’s hand
words – gerald king
location – glenrothes, scotland
As we begin the finale of our work to rewrite the story of dementia, the culmination of many years’ worth of research and development, we’re looking back to one of the project’s most poignant publications: Gerald King’s In the palm of a spider’s hand.
Having spent his working life as an Architectural Technologist at Fife Council, at the age of 55 Gerry was diagnosed with young onset Alzheimer’s disease. Presented with a bleak future, Gerry is fiercely open about the realities of diagnosis and the desperate need for a truer narrative than that perpetuated by mainstream media. His search for something better led him to peer support group STAND and then on to explore word play to better share his lived experience in collaboration with boom saloon.
In the palm of a spider’s hand is his first book of poetry, excerpted below; to purchase the full publication, with all profits raised supporting the finale of our work to rewrite the story of dementia, please click here
A lot of what I write down is how I feel and what’s on my mind. There are slightly dark moments and much lighter moments.
Initially, my dementia diagnosis had a devastating impact not just on me, but on my family as a whole. Due to the diagnosis I was retired from work, losing over 30 years of friendships. I lost the feeling of self-worth; I felt that I was no longer contributing to society and I lost the main reason for getting out of bed in the morning. I was instructed to surrender my driving license, losing all the freedoms associated with that; money was an issue at the start as our family income had been reduced by at least 50%. But probably the worst impact was how I treated my family.
I was depressed, I wouldn’t leave the house and all my frustrations were taken out emotionally on my wife and children, which I find hard to forgive myself for because they are the ones who love and look after me unconditionally.
Things, however, are totally different now.
I have overcome the initial diagnosis and actually look upon having dementia as a blessing. Since being diagnosed I have met many people – not just here in Scotland but throughout the UK and all around the world – who are also living with a diagnosis of young onset dementia. These are truly inspirational people and are to be admired for the courage and support they share throughout the dementia community.
We have formed peer support groups, we provide dementia awareness presentations in our local community, we provide training courses for people who are newly diagnosed and we also campaign on behalf of people living with a diagnosis of dementia who are not as well-supported as we are.
Hindsight is a wonderful thing.
Receiving a diagnosis of dementia was not the end of the world it is often presented as; for me, this could not be further from the truth. It has been a new beginning. It has introduced me to many new friendships and opened up many new doors.
What I would like people to understand and acknowledge is that dementia is not a natural part of aging. Dementia is a long term, terminal disease of the brain and should be recognised as such. Dementia can affect anyone, at any age. However, that being said, a diagnosis of dementia is not the end of the world.
Don’t let dementia define you.
Sure, the end stage is scary, however there is also a beginning and a middle stage – and they can be enlightening. Dementia was a new beginning for me; my old skills are slowly disappearing, however, they are being replaced with new skills. I have a new group of inspirational friends who truly know what it feels like to be living with dementia. There is some tremendous support out there from incredible supporters – although you may have to look for it at times.
I hope this book aids you in the search and provides a little light to your dementia journey. As I said at the start, a lot of what I write down is how I feel and what’s on my mind. There are slightly dark moments and much lighter moments. For me, this is the true depiction of my dementia journey. I look forward to sharing it with you.
Oh nightingale
Never underestimate,
The power of a smile.
A small but simple act,
That makes it all worthwhile.
A soft and gentle touch,
To wipe away the tears.
Kind compassionate words,
To take away the fears.
Firm outstretched arms,
To gently hold you tight.
An embrace to keep you warm,
On a cold winter’s night.
A kind, listening ear,
That hears everything you say.
A still and silent tongue,
That does not judge in any way.
So a simple act of kindness,
Which makes somebody smile.
Can take away the pain,
And make a life worthwhile.
I’m Having A Moan Today
I don’t want to be happy and cheerful today, I want to
have a long face shrouded in a grey mist and a down
turned smile. It’s hard at times to put on a brave face
when the other side of the coin just wants to scream and
shout. Don’t do this, you can’t do that, you must stop
doing this and you must give up that is what I hear on a
regular basis. You don’t look as if you have dementia is a
favourite one of mine. How amazing is that, I never
realised that dementia had a look. Is it possible to wear a
PVC armchair slung over my shoulder whilst wearing my
trousers back to front and my boxers hanging precariously
on my head. Possibly, but that’s just not my style. You’re far
too young to have Dementia is another favourite. I didn’t
realise that an illness or disease only happens at a certain
age. Wouldn’t that be amazing if you only contracted
cancer after the age of 73 or heart disease after the age of
76? Life unfortunately just doesn’t work that way, it throws
you a curveball and it’s how you catch that ball and then
throw it back that matters. And it’s alright to have a moan
and groan from time to time, after all we are human just
like everyone else… are we not?
So what if it takes me longer to process the information
afforded to me or that my brain has to work 10 times
harder just for me to be able to put one foot in front of the
other? “Trish, did I take my tablets today?” Oh shit… there
goes another dish and I forgot to put a wash on, empty the
dishwasher, put the bins out and take something out of
the freezer for dinner. Never mind, we have Just Eat on
speed dial and happily wearing dirty, smelly clothes is a
comforting yet disgusting side effect of living with
dementia. “Trish, did I take my tablets today?” Big bulging
pads that are supposed to protect me… protect me from
what? They are huge, obtrusive, embarrassing and can
probably be seen from space. Wearing my dinner on my
nice clean clothes. Coffee chicken casserole, anyone?
“Trish, did I take my tablets today?” Ignorant and selfish
people who are not entitled to, but park in disabled
parking bays anyway just to save themselves having to
walk an extra 30 yards to the shop. That feeling of being
left behind whilst the whole world seems to move on by
without you and without looking back just to see how you
are getting on. Friends who struggle with your dementia
diagnosis and who stay away rather than just saying hello,
fancy a cuppa?
“Trish, I can’t remember if I had my tablets today!” Loved
ones who just want to wrap you up in cotton wool
because they want to protect you forever. I love you with
all my heart but never ever will there be a ball of cotton
wool big enough to cushion me. There are many, many,
more… however… these are but a few of the reasons
why I don’t feel like smiling today. Oh and by the way, yes,
I did remember to take my tablets today.
But always will I hear the song
Of a nightingale in pain
His melody unanswered, all alone
His sweet song sung in vain.
Alzheimer’s is…
Alzheimer’s is….
Like walking on still waters
Laced with rough skinned crocodiles
Patiently waiting for endless ripples
My eyes fixated on their smiles.
Enticed into a feeding frenzy
Tearing flesh clean off my bones
Until they’ve satisfied their hunger
And every piece of me is gone.
Alzheimer’s is….
Like a peaceful Venus fly trap
Bathing in the tropical sun
Calmly waiting for a gentle touch
In a flash the trap is sprung
Slowly and gently cradled
Vice like bars squeezing my breath
Enveloped in a shroud of darkness
Leading to a long and lingering death.
Alzheimer’s is….
Like a high flying spider
Floating gently on the breeze
Looking to spin its deadly Web
High amongst the branches of trees.
Its soft and silky Web of deceit
Spun from its body strand by strand
Drained of life inside a silken tomb
Held in the palm of a spider’s hand.
Why me?
When I trip and fall or feel ill at ease,
When I bang my elbows or skin my knees.
When I burn my hands due to this disease,
I never ask… Why me?
When memories of a life gone by,
Just slip away in the blink of an eye.
My mind’s shutting down as it starts to die,
But I never ask… Why me?
I see your face but I don’t know your name,
Memories of you are no longer the same.
I look and smile as I hide the shame,
But I never ask… Why me?
My brain is working overtime,
As constant thoughts invade my mind.
But still the memories fade and unwind,
But I never ask… Why me?
Frustration and anger cloud my thoughts
Sometimes overwhelming sometimes overwrought.
Many battles lost, many battles fought
But I never ask… Why me?
So remember me for who I am,
Not me the disease but me the man.
Just walk with me and hold my hand,
For the answer’s simple… Why not me?
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