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 *** and a ciggie.

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... 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 Birmingham Moseley’s first team, 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!
That’s the trouble though... he sometimes 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
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!”

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

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.

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

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

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.

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