I used to wonder where CJ - ulookarmless - hides those evil twins Pain and Despair. Relentlessly cheerful and positive in all his interactions, I knew the twins were ... somewhere. And then he shared his poetry with me, the place where the twins live. ~ Nurse Kelley
KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
Today's diarist is ulookarmless.
SONG FOR A ONE ARMED GUITARIST
If you wanna get to heaven
Then learn C-F-G7
For a classic symphony
You must learn the key of E
In jazz augmented chords are king
Especially for swing
But without a sinister arm
The right hand only strums
So instead of the guitar
I guess I’ll play the drums
IT’S RAINING
Damn this cancer
Creeping slowly over me
Taking my abilities
It will not let me be
Seizures from the chemo
Weak heart from the surgery
Buzzing in my head
Regular physical therapy
A person could get discouraged
Life is really draining
Looking out the window
I notice that it’s raining
FUNNY
Heart attack took strength
Stroke caused lots of harm
Seizures cause major fits
Cancer took left arm
Money all gone
Deserted by wife
Always in pain
Guess this is life
If it wasn’t happening to me
I could definitely see
How funny this is
2008 IS HERE
Another one in the books
Survived for one more year
2007 is gone
2008 is here
Fourth bonus new years eve
Four more than I expected
Ready to die young
When cancer interjected
But thanks to Dr. S
My future’s looking fine
The great oncologist
Says ten more years are mine
FOR SOME WEEKS NOW
For some weeks now I have had
A sense of impending catastrophe
Either for myself
Or for the entire planet
I’m not certain
Cancer, stroke and seizures
Are taking care of me
And American politicians
Are taking care of
The rest of the planet
I can accept my fate
I am the cause of my own future
But cannot accept
What jingoistic megalomaniacs
Are doing to my children
For their sake I can only hope
That they decide to toss out
The panderers, embezzlers and grifters
And restore this nation, and the world
To it’s rightful owners again
I will go to my grave
Looks like sooner rather than later
Believing that my personal fate
Is not for everyone
We will survive
MISSIONARY POSITION
While sitting in the waiting room
Waiting to see the doc
An earnest young man invited me
To come and join his flock
I guess he didn’t know
His useless invitation
Was wasted on a person
Not sharing his elation
Perhaps to get realistic
He really needs a prod
To donate food and clothing
Rather than faith in god
NO INSPIRATION
Today I’m feeling bad
My head is all abuzz
My phantom pain is worse
My brain is all afuzz
Think I’ll go back to bed
And sleep til afternoon
Get up and then go back again
Until night’s coming soon
LIFE’S A BIT LIKE THAT
Wake up in the morning
To a sink of dirty dishes
Have some eggs for breakfast
Despite your doctor’s wishes
Sitting drinking coffee
Absorbing all the dirt
In the local coffee shop
In yesterday’s t-shirt
Lunch at one a sandwich
Or some soup out of a can
Then nap all afternoon
Or do puzzles til the man
You’ve looked forward to comes on
At five to catch you up
With the news outside your walls
He really fills your cup
With the foolishness of those
Who want to lead us all
Or they that they know best
(I wouldn’t have the gall)
Then dinner all alone
While watching the TV
Basketball or hockey
It’s all the same to me
Exhausted by the meds
By 9 or so in bed
Solving several sudoku
Buzzing in his head
Sleep in fits and starts
Phantom pain still there
After almost 4 years on
Very hard to bear
Wake up in the morning
To a sink of dirty dishes
Have some eggs for breakfast
Despite your doctor’s wishes
ITCH CAN’T SCRATCH
When I used to itch on my right side
I would scratch with my left hand
But now, without a left arm
My itches I can’t stand
BLOOD TEST
Wait in rain at unprotected stop
Bus arrives pay fare show card
Walk in to laboratory
Shouldn’t be so hard
The needle prick is fine
The bubbles only burst
When the possible results
Advise you of the worst
DEPRESSED
Feeling lousy nothing working
Lonely and in pain
All around me selfish people
Everywhere is rain
Looking rotten face itching
Skin is always taut
Concentration compromised
Money always short
Life rotten same old same old
Doctor, cook and shop
Then sleep and wake
And go back to the top
MUSING
How did this happen
Why am I here alone
Lost my family and friends
My mind and my arm
And my country
Instead of living in a stable
Sane society in the Southern Hemisphere
I chose to live in schizophrenic America
A nation with no purpose
Other than chest beating
How can the world’s richest nation
Cause poverty around the globe
And ignore its own poor and disabled
How can a Christian nation
Kill so many innocents
WAITING FOR THE BUS
Been standing here for twenty minutes
In the freezing wind and rain
Waiting for the bus to come
To go downtown again
People pass me in their cars
Never looking round
Perhaps they think "Glad it’s not me
Glad I’m whole and sound"
A guy in a red sports car
With arms gesticulating
Arguing with blond girlfriend
While the lights keep him waiting
A pimply faced teenager
In a twenty year old Ford
Accelerates to beat the lights
And cuts off an Accord
Here comes a gust of wind
That brings a sudden blast
Of cold and freezing horizontal
Rain that’s coming in too fast
The bus is coming just in time
This weather’s got me beat
A coffee and the New York Times
In comfort and in heat
DIZZY
Today I woke up dizzy
Lethargic and discombobulated
Cannot understand why
My brain is underrated
Gradually I seem to be
Sinking into my own personality
Becoming a shadow of
The person I cannot see
PHANTOM
Last night the Phantom struck again
It struck in my left arm
And though the arm's no longer there
The Phantom does great harm
The wrist is very painful
Fingers curl up in a ball
This non-existent menace
Won't let me sleep at all
The best solution I have found
An imaginary cane
To whack the Phantom 'til he stops
Then whack him once again
The problem with this whacking
Is really plain to see
When I'm beating on the Phantom
I'm also whacking me
I wake up all exhausted
My stump is black and blue
I'm mentally lethargic
The Phantom ne'er says "Boo"
SLEEP
Could not sleep last night
Read until 3AM
Then woke at 5:30
What a mess I am
At 2 in the afternoon
No trouble with a snooze
But a normal bedtime
My sleeping gene I lose
The book I'm reading is
About a man like me
He also cannot sleep
Please just let us be
SLEEP
Lying in the dark feeling bad
When will it ever come
Eyes are looking round the room
Chest is feeling numb
Legs are restless like the ads
Phantom pain in hand
Buzzing ceaseless in my head
Really hard to stand
Finally sleep comes at last
Only in starts and fits
This pattern must stop soon
I’m going out of my wits
WALK
Must begin to get fit again
Must begin to walk
Instead I have become a major
Complainer who’s all talk
I only have a few years left
Between cancer and my heart
I need to make the most of all
The time that’s left and start
To enjoy every moment now
Good and bad ones too
I’ll savor every second left
There’s nothing else to do
PAIN
The pain in my non-existent arm never stops
The phantom pain of loss
It wakes me in the middle of the night
Makes me turn and toss
Pain in the side of my head endures
Since stroke knocked me down
A constant buzzing in my brain
My face a permanent frown
The pain in my chest is complicated
From heart or cancer I can’t tell
It stops me after 10 minutes
Feeling this way is hell
The physical pain as bad as it is
Is not the worst in fact
The pain of being rejected
Has the most impact
ACUPUNCTURE
Comes with case of needles
And smoothing voice
Relaxes muscles
Offers choice
From Western treatment
Chemically based
Eastern solution
Spiritually faced
To ancient China
3000 years ago
Traditional learning
No side effects and so
I lie there like a hedgehog
With needles and pins protruding
Breathing from the stomach
With no other sound intruding
LOUSY
Physically very ill
Cannot even run
No energy tired all the time
Nothing is much fun
Psychologically very ill
Just don’t seem to care
Just a burden on my family
Can’t my troubles share
Mentally I’m very ill
Brain just does not work
Stroke gave me broken head
Makes me act like jerk
Spiritually bankrupt
Feel lousy all the time
Better to go off alone
My living is a crime
SURREAL DREAMS
Lately I’ve been dreaming nonsense
Don’t know what it means
I think it must be the drugs
I’m seeing frightful scenes
Sometimes I wake to grab my arm
But it’s no longer there
Amputated years ago
I just reach for air
At other times I hear the words
Of some new country song
In a language I don’t understand
And a melody that’s wrong
Nevertheless I carry on
There’s nothing else to do
I’ll never give it up
Tell me what would you do?
MORE TESTS
Another month of tests for me
Blood and x-ray for cancer today
Thallium for my heart next week
EEG to see if brain’s OK
The benefits of all these tests
Are not merely medical too
They also keep me busy
And give me something else to do
FEELING BAD AGAIN
Feeling lousy is now the norm
I never seem to feel alright
My head is buzzing all the time
I cannot get to sleep at night
My phantom arm is always there
Reminding me of things I cannot do
Any more. The flaking on my face
Is permanent and itchy too
Ever dizzy, ever woozy
Lethargic and feeling tired
Lousy rotten awful feeling
Definitely not inspired
CLEARED OF ALL CHARGES
If I could only handwrite my poems
I would be much happier
Because then I would be able
To feel the flow through my fingers
Up my arm
Through my neck
And into my brain
Where it bounces around
Running into other thoughts
And fantasies
Until it comes out whole
As I try to express
My inner thoughts
In language that means
Something to others
Besides myself
Entering thoughts on the keyboard
To display them on a screen
Is akin to giving your fingerprints
To the police before committing
The crime
Especially when you know
That they will lose them
Anyway
When they can be used
To clear you of all charges
ON LOSING A DOCTOR
Opened my eyes to stare at waffle ceiling
Where beeps and clicks surround my head
A young doctor, a first year intern
Looks down and says "You are not dead"
"You’ve had a stroke, you also have
A virulent form of cancer
But do not worry we will take
Care of you" in tones to help enhance a
Longer life a useful life
For the next four years she’s been a charm
Through heart attacks and seizures
And amputation of my left arm
As I have come to accept my lot
She’s become a mature physician
As I have come to trust her judgment
She’s adjusted her position
Now she’s off to Tanzania
To help in the third world
Where here skills will be appreciated
A woman not a girl
AWAKE ALL NIGHT
Yesterday was a bad one
Too many distractions pressing
My fog laden brain
My brain is stressing
On the eternal phantom pain
And the buzzing in my head
And my itchy itchy skin
As I got out of bed
My daily medication
Keeps me in a mist
Always dizzy slightly slow
And with a left side list
Then last evening my computer
Stopped working in a manner
That I consider proper
A broken spyware scanner
Then at 12 midnight I woke
Scratching leg and back
And stayed awake all night
So now it’s sleep I lack
I think it now is best
For me to get some rest
PAIN #2
Excruciating agony
Clouds the brain
Fending off all thoughts
Of comfort
Physical pain
Stops the body
Halting all attempts
At recovery
Hard to get through the day
When you don’t know
What day it is?
Not sure which is worse
The pain
Or the fog of pain
Relieving
Drugs
BENEFITS OF TECHNOLOGY
Now we are all connected
Via cell phone and internet
Why hasn’t life become a breeze
Why are we all in debt
In medicine we know so much
We can cure most diseases
So why do nervous doctors
Ask for hold harmless releases
We have put the future
In the hands of unimaginative
Bean counters with no souls
Rather than Einstein’s relatives
DYING SLOWLY
How long do I have
When will it take me
How will I go out
When will I not see
Anymore more with these
Brown and blurry eyes
As my body shuts itself
Down in brief surprise
Or will I just collapse
In excruciating pain
As the medics make
My heart beat once again
Perhaps I’ll simply fall
Asleep and never wake
With a satisfied smile
That would be a break
LUCKY I GUESS
All my life has been
A struggle between
A body full of disease
And a brain full of ideas
Epilepsy took my teenage years
Made me a drooling fool
Then Cocsackie got me
In the heart muscle
To lay me low for almost
Two years
Destroying my thriving business
In Hong Kong
So
Came to Los Angeles
To struggle with narcolepsy
And second divorce
In Oakland
A blood clot in my leg
Slowed me for a while
Then 4 years ago today
A stroke took me to hospital
Where cancer was discovered
Amputation of left arm
Several seizures from chemo
Cardiac arrest on operating table
Now have implanted defibrillator
And heart incident about
Every 2 months
Just
Lucky
I guess
LETHARGY
I
Am
Having
Real
Trouble
Concentrating
That’s
It
Concentrating
On
Anything
Perhaps
It
Is
The
Drugs
Or
Perhaps
Perhaps
The
Effects
Of
The
Stroke
Combined
With
The
Epileptic
Seizures
And
Weak
Heart
And
The
Drugs
And
The
Drugs
And
The
Drugs
WORSE THAN THE DISEASE
Lately the treatment
For my heart body and my brain
Has been hard to take
Causing me much pain
The seizure drug makes me sleep
And itch and spin
The heart pills lower BP
Make my blood so thin
That all considered
I’m not sure the doctor sees
The treatment I am getting
Is worse than the disease
CANCER RETURNS
Cancer came back
An unbidden attendant
At the family reunion
That crazy distant relative
Who always manages to say precisely
The wrong thing
At
The wrong time
LEUKEMIA
Last week they told me
Even my doc scratched his head
Upset! Not at all, it’s normal
Kill me? No, not yet dead
Every time cancer tries to
Make me give up and die
I look it square in the face
And hit it with a pie