#parkinsons
last year
i discovered
ren
music
personified
he is
an example
an inspiration
to many
he
understands
because
he
has been
there
where?
in those
dark
scary
recesses
of
your
mind
he has
been there
and
back again
his
suffering
was
so much
more
than
mine
he has
been there
and
back again
if he can deal with
his health challenges
then
surely i can endure
mine as well
if only
i
knew
how
how? ren
he is
a musical map
back
to
sanity
this is
what it means
to be
inspirational
Sep 10, 2024
Sep 10, 2024 at 12:53 PM UTC
two cars depart
a path we know
like the back
of our hands
a beginning expected
no hint of
what was to come
the threshold
of familiarity
suddenly breached
the look of confusion
I feel echoes on his face
as I drive by
two cars separate
one turns
the other straight
fog fills my brain
overflowing
into the world
around me
my thoughts
flood with indecision
forward or back
known or unknown
both shrouded
an eternity passes
I turn around
head back to
where I came from
the vanished threshold
more fog in its place
I follow the confused face
an inkling of a memory
a single building emerges
a beacon of light
beyond the beacon
a choice to be made
almost but not quite
I spy an empty lot
I must do what I dread
I place the call
I try to explain
my journey continues
two cars reunite
a little less hazy
a little less confused
a lot more concerned
the beginning
of the end
of my driving
Sep 5, 2024
Sep 5, 2024 at 9:42 AM UTC
I rage
In frustration
I cry
in frustration
talking
is the
beginning
of the storm
a few
dark clouds
from a
few
forgotten words
I knew
ten
seconds ago
the storm intensifies
an attempted
story
explanation
question
answer
yet
comprehension
is a rare jewel
still
hidden
in
the
mud
too fast
too slurred
too loud
too quiet
not enough patience
not enough words
not enough listeners
not enough time
the tornado begins
and ends the same
with a rush of
inability
and
embarrassment
and
wonder
why
I am
too frequently
the source of
mine
Sep 10, 2024
Sep 10, 2024 at 11:58 AM UTC
It’s a slow slide to somewhere else...
He shuffles, stumbles stammers and he sleeps.
He knows I am his brother.
I help him go for a wee in a bowl,
we’re standing by the commode.
He shuffles back to his comfy chair
but only with my help.
“Are you my brother?”
“I am,” I say.
Six years is a biggish gap between siblings.
‘Our Brian’ tolerated me...
”Take Chris to the pictures”...
”Aw Mum, I’m 18... he’s only 12!!!”
He headed on out with his mates, smirking,
waving a ciggie and a beer.
But, when he needed a whizzo batsman for his cricket team,
who knew?
I was strangely unavailable...
But, I capitulated and said “OK I’ll play for you!” We won!
At 81 he shuffles, he stammers, stumbles and he sleeps.
He employed 300 people in factories overseas,
spoke with authority, negotiating with emperors -
always with total ease.
Today he talks in whispers, his larynx squeaks;
clatters like a broken pipe, every time he speaks...
He shuffles, he stammers, stumbles and he sleeps
...for most of every day.
“
I am your brother aren’t I?”
“You certainly are”, I say.
He was the head of magistrates handing down the law...
I joked... I called him ‘hang ‘em high Bri’,
him judging slightly to the right of Atilla the ***
I remind him of his past... and we smile ...
(because of course it wasn’t true)....
The last thing to die will be his sense of fun.
He shuffles, stammers, stumbles and he sleeps.
He played prop forward for Moseley’s first fifteen,
maybe his problems started way back when...
too many head clashes, line outs, scrum downs...
That’s the last thing you’d think about back then.
But there’s long term damage you might do...by just ‘being’.
He stumbles, stammers, shuffles,
dummies
and scores in his dreams...as he sleeps.
He even went to garden parties at the Queen’s Equery’s behest
as well as, whilst in India, often - he’d be a Maharajah’s guest.
And, when you mention it, he just smiles wryly
and stares, with rictus grin. He IS in there!
But that’s the trouble though... sometimes he IS locked IN!
He stumbles, stammers, shuffles, smiles -
and he does love to rest.
But sometimes he will rally with a string of memories
all lucid and true... and, if there’s food involved
well, he’ll be at the table way ahead of you.
That’s the quick shuffle!
He makes good progress
through all his favourite stuff,
Then he’ll lie in his reclining chair
and enjoy that customary nap
You watch him closely - making sure he’s still breathing
- thank heavens for that!
He stumbles, wheezes when he talks -
and shuffles when he walks...
He shuffles, stumbles...then he sleeps!
“You are my brother aren’t you?”
“You know I am - for keeps!
Love you Bri!”
Jul 7, 2024
Jul 7, 2024 at 3:22 AM UTC
Sometimes I just want to be normal
I want to stroll over to the pub
And chat to a guy I know
And when I want to leave
I shall go
I shall walk out into the sunlight
Stretch my back and get into my car
Put on my music loud
And drive as fast I can
As fast I’m allowed
It will take twenty minutes or so
To reach the station in time
I park and watch a disabled guy
Limp to the ticket machine
I thank my lucky stars
That it’s him
Instead of me
You see me as you leave the train
You smile in that familiar way
Demure and kind of formal
A smile that a wife
Would give to a husband
If he was normal
Yeah, normal is what I’d like to be
Nothing special, just as before
A man who could hold his head high
A man who could sing with The Beatles
Tell me why
Nov 27, 2023
Nov 27, 2023 at 1:34 PM UTC
As school comes to an end, I decide to
spend the summertime with my instrument.
I read music theory for two hours,
but my hands yearn for the touch of six strings.
Fingers position themselves to stroke bliss.
But my phone’s troubled with recurring rings.
**** it was mom telling me I have class!
I raced for my backpack, and I told her:
I will not slack. Papers grew so lonely
without their folder to cuddle them close.
I couldn’t care to organize them cause
usually, I’d lay in my seat repose.
Ionic bonds? What do they even mean?
And what the heck is “double replacement”?
Okay, I should start paying attention.
I grasp the pen. I notice the tension.
As soon as I write, my hands start to shake.
I start over. Now hands begin to ache.
What in the world is happening to me?
Two words: I scream. Head jerks, and my legs shake.
It has to be a dream. It has to be!
Don’t want to move, but I have to take notes.
Why are random words bursting out my throat?
I’ma be real. I need my mommy!
Class is over. I exclaim to mother:
my fingers refuse to stop tremoring.
And I’m getting these tics. What set it off?
First thing I do is reach for my guitar.
I can’t hold it. I can’t ******* grab it.
Eyes of terror stay written on my face.
The next day I was in a wheelchair.
I cannot look straight- straight up to the sky
or look in front and into people’s eyes.
My right-hand curves to the left. A tendon
sinks into my flesh, and my left fingers
cramp up from being intertwined like vines.
They are stiff. Hideous. These are not mine.
But it does get much better with some time.
I can walk again, talk again, and write.
But all good things come with downfalls, don’t they?
My brain disease will come at me with might.
And I refuse to give up on this fight.
There will be a time when I reach stage five.
And I know it won’t be a pretty sight.
I’m ready for what will happen to me.
Dearest guitar, please know you’re my heaven.
Why bother to fret? Cause’ when the time comes
I’ll see you again in a few seconds.
Jan 8, 2022
Jan 8, 2022 at 4:46 PM UTC
at 4 A.M.
you do these things
they become habit
eating in the middle of the night
waking up as routine
contemplating your plight
contemplation
of you
what you do
in the middle of the night
is that really you
or a symptom
or side effect
did you choose the road here
or is it a neurological pathway
a chemical imbalance
a plaque to your horror
at 4A.M.
contemplating
taking things apart
or are they
taking
apart
you
May 2, 2019
May 2, 2019 at 7:54 AM UTC
1:11 AM
Hiding in
A cake
Riding out
The terror
Basking in this light
Blind me to it all
Capture all my fears
Envelope me
My temerity
Save what’s left
The few words
That struggle
To be free
Of the
Terror
That is
Me
Mar 15, 2019
Mar 15, 2019 at 7:28 AM UTC
PARKINSON’S
One slow step follows another
Limbs still bound to earth by
The golden cords of love.
At night, my dream self,
Startled awake, I watch
From my window as one star
Tips the dipper,
My strength has gone
To well-water, frozen
In winter, convinced
That spring must arrive
By dawn, but hope has
Blown away like the petals
Of late summer roses,
As I watch that silly moth
Circling the candle flame,
Longing to become Buddha,
I wait for the cure, a guest
That may arrive too late.
Dec 18, 2018
Dec 18, 2018 at 5:15 AM UTC
You are in a recliner
M.A.S.H. is on the T.V.
A boy moves you to a wheelchair
White doors
Hallway
Small reuban cube dinner
Thickened water
Chocolate ice cream
White fabric
White light
Black curtains
Sep 10, 2017
Sep 10, 2017 at 7:29 PM UTC
I don’t fight with Parkinson's
I live with it,
I have Parkinson's
and Parkinson's do have me,
I don’t hate Parkinson's
I want to fall in love with it,
We aren’t each other's enemy
We are the soul mates;
I born with each step of my leg
then I die
I born again with the another step
then I die
so my life is just about a foot step;
I don’t think about the distance I need to walk
I think about the step I take
I nomore struggle to get rid of parkinsons
rather I try to adjust
I have accepted it
I respect myself for it
I don’t hate parkinsons
I want to fall in love with it
Apr 26, 2016
Apr 26, 2016 at 6:43 PM UTC
et rystende maleri. han har brugt lang tid på det, får jeg at vide
det ligner noget et barn har tegnet. bogstaverne er runde
og vaklende og skæve. han har malet farverne ind over hinanden.
det rammer som en snestorm, som en iskold bølge inde i hjernen, tårerne som spor af følelsen
kernen af et menneske, hvem er man når den svinder, når den
ryster og hiver efter vejret og falder
og langsomt smelter bort?
det er smertefuldt at være vidne til. forsvinder han? er det hans sidste maleri?
ikke til at holde ud, jeg må væk, jeg må besøge ham eller
skrive et digt, jeg må gøre noget
for ellers flyder jeg over
af salte, kolde bølger der vælder
Sep 9, 2015
Sep 9, 2015 at 1:00 PM UTC