What You Are, What You Eat...

Wandering back and forth between the dream and the reality, 
Lingering in the state between sleeping and waking
A car door opened and closed and I came back fully.


Flushed from the fever, sticky with sweat, 
Which shrouded my body.
The night of fever has broken.


Thirsty.
No water within my reach
I saw a bottle several feet away.
No energy to move.
I wondered how a squid would feel while being dried.


The doorbell rang.
It's MAMA!
She brought udon noodles.


Slurp. The squid re-hydrated.
Salty and steaming hot
I ate in silence.
MAMA was watching over me.


Strawberry, chilled in the fridge
A round strawberry
I thank the grower, I thank the distributor, it is delish.


The doorbell rang, again.
The housekeeper came
Thank you for laundering sheets.
Thank you for washing dishes.
Thank you for tidying up
Thank you for mopping the floor.


It's a busy day for the doorbell.
The doorbell rang.
Naoko joined me for lunch.
Tablemates boost my appetite.
Cheered up I asked for more.
Life force is in eating.


The business is brisk.
The doorbell rang.
KP came in the afternoon with
A pink electric pot, my favorite color, the shade of sea shell.
You can drink tea when you want.
Yes.
Thanks to the electric pot
Yes, and it's thanks to you.


The housekeeper came again.
Thank you for looking after me.


KP came again.
I'm grateful to see him many times today.  I AM happy.
He came, bringing sushi for me.
Yet, something is wrong... I feel feverish again.
My favorite hotate sushi, I only ate three pieces.


Wheezing
Short of breath
My chest was full with suffering; my heart was empty.
The night was approaching 
The night I would sleep alone.


I always stumble before saying a goodbye.
The heart is hollowing every second.
The heart is cooling every second.


While the water in the pink sea shell is steaming warm.


The sound of a closing door, the last one for today 
was the sound of sadness.

Poem by Maria Franki

Edited and translated by J. Ujiie

©2011

Feverish on St. Valentine's Day

February 14th


102 degree F.  I had a chill.
I laid my body down on the cool floor,
To calm myself down
And then found that three hours had past since the first chill.


Yesterday my sense of time was paralyzed.
I wriggled and writhed like a snake to find my place
In my own room, where I felt I didn't belong to.


The state of mind was gnawing at the body.
I couldn't even give a cough to loosen phlegm
ALS has gnawed away my abdominal muscles.
This is serious.


I'd better sleep early, hoping I would be well tomorrow.
I know the best medicine is to see the loving look in your face. 
I wonder what your eyes are looking at now.


Only if I could bury everything in a dream.
I am suffering.


If it hits 104 degree, I'll go to hospital.

Poem by Maria Franki

Edited and translated by J. Ujiie

©2011

Turbulent Mind, Crawling body (ALS)

February 13


I carried my immobile legs slowly to the curtains, 
With careful steps not to fall down.


I opened the curtains, with utmost care
Not to lose a balance.
The blue sky was lucid;
Yesterday's snow was history.
The heaven's mood changes fast.


This morning, I was eagerly waiting someone's visit.
This illness has taught me the joy of waiting.
You bring me the air outside.
You take me out to the world outside.


A grate of a key in the lock sings a song of love to me.
From the otherside of the door, you bring the outside world.
Books, newspaper clippings, and magazines.
You know what? The ultimate gift is your voice.
It teaches me many things:
Stock market, politics and economy
Even a gossip about the neighborhood greengrocer sounds erudite.
I love, love and love you lots.
You make my world expand.


And I fell out with my beloved.


For the first time I crawled across the room.
I crawled and crawled to get to the mobile phone and
I hit my chest with a step.
It was a sad and lonely crawl not like the crawling of a baby.
I crawled ... like a worm.


On the mobile phone I crawled to reach to 
I found my call was blocked.
My voice was cut off from the endless communication line.


My mind started to fall apart
My chest ached where it hit the step.
I was cut off from the world.
I was cut off from you.
My mind screamed, wandering in the darkness.
Have you left for good?
I have another year to live and you say goodby now?


I don't know what to do.  I am at a loss.
Is your love history?
As yesterday's snow disappeared.


The mood of the heaven and the mood of you are unpredictable
It changes fast and it opens the door sadly.
A grate of a key in the lock sings a song of love to me.
Once
Twice
Three times, and many more.
I want to hear the doorbell ring
for the rest of my life.


Tomorrow, I hope I will see a blue sky.

Poem by Maria Franki

Edited and translated by J. Ujiie

©2011

Humidifier

February 12


Today's dinner, the first meal of the day.
Sushi to go.
I've become their regular customer.
I can go there in a wheelchair, a minute walk from, No, a minute roll from my place.


Pine, Bamboo, or Plum sushi platter; the price decreases in Yen 500 increment.
Today I opted for the mid-priced bamboo platter.
3000 Yen.
The left over of wine from the last night paired perfectly with
The cheese.
Today's happiness received, part one.


I received a humedifier as a gift.
Thank you, K.P.
I tried it out immediately.
There is a trick.


Operated along with a negative ions generator, it would boosed the generation of negative ions and it will have a positive effect for ALS.


It was Mr. K's advice.


There is no medication prescribed for ALS.
Patients have no choice but to try out whatever people say works 
And they try at any cost.


A negative ions generator
A humidifier
My can-do attitude
And KP's determination.


Those are all I need.
On switching the humidifier on
Warm steam started to rise
The glass window blocking off the cold outside air started to sweat
I sensed the temperature rise.


The outside is so cold, the inside is warm.
I wished the warm tranquility would last forever.
I wished with my whole heart.
Today's happiness received, part two.


At the head of my solitary bed
I fell asleep holding the steam.
I wish with my whole heart your love would not melt away.

Poem by Maria Franki

Edited and translated by J. Ujiie

©2011

Dinner Together

February 11th


The electronic sound of ring tone went off.
It was Yuri for the first time in half a year.
She offered me to have dinner together.
I haven't had anything since morning.  My stomach rejoiced.


It's nice to wait for somebody to come.
It buoyed the depressed feelings up a little.
Feelings sink, lift, and shut down, ever transient.


Yuri came with a big back pack full of gourmet food.
Open cultured vegetables smell the earth and the sun.
Free range chicken broiled with salt, the salt was from French coast
Yuri is active on the international stage.
The salt from Okinawa also taste good, but
I have a weakness for French, 'Cause I am a country girl!


The stomach of the myoatrophic proved to be robust.
I've eaten it up and am ready for wine.


Oh, I remember now.
When I broke up with Bob,
Yuri came with food.
It was tuna over rice and red wine


The loneliness of being alone then when Bob left and the loneliness of being alone now with ALS,  which is lonelier?  I asked myself.
Well, 
It's now, of course.
ALS includes death.
The divorce included the future.


I don't want to die, I confided in Yuri.
Yuri told me to believe in miracle, think realistically, and address together. 
Thank you, thank you.  I do.  I want to be.


The midnight sky tinted in wine red, and the taste of wine becomes starts in the universe.
The star of miracle 
I hope it will be.


Yuri, See you again.
I wait for the electronic sound of the ring tone ring.

Poem by Maria Franki

Edited and translated by J. Ujiie

©2011

Life Style Study

February 10th

I'm too late for 6:00 pm.
I texted Ms. Grasshopper.
Can I push back 30 minutes?
Hurry, hurry.  My mind is on the run; my body swims in the deep morass.
Ms. Grasshopper arrived at 6:30 sharp.


I need to be at Omote Sando at 7:00pm.
Getting on a cab, getting off the cab,
It takes five times as long as a healthy person.


The building is just across the pedestrian overpass and 
It is absolutely beyond my power to cross the overpass.
The taxi went a long way round to the venue.
Here we are, finally.


Held from the both sides
I managed to climb down the steps 
Only to find that it lead to the wrong building.
No way.  Gasping for air
I had to go back to the start.


The mere 6 steps of the stair is a valley of fear for me.
My left foot won't rise even one centimeter. 
My back and my hips have no muscle tone.
I only move jerking like marionettes.
Until now I believed I could walk more steadily.
What's wrong with my body?


Able-bodied people started to gather around me.
"You can stand up."
"Hold on to my shoulders."
"One step at a time."
"Won't do."
"How about a piggyback ride."
Conversation goes.


I have muscular atrophy just as I have been told.
I can't live the life of the robust.  It's my reality, the reality of my life.
The conversation attests to the fact.
Do I have to accept? From when? To when?
I am the weak, the amyotropic.
I can't do this, I can't do that, I can't do anything.


I was hauled down in a wheelchair.
With the rolling of the wheelchair in the air, my mind started to atrophy.
I cause troubule to others.
I shouldn't go out.
In a solitary resistance, I decided I would never go to places where people gathered.


The life style of the myotrophic is that of confinement at home.
I thought.  I felt.


The lecture was going on about the lifestye of the youth.
The seminor as usual. Nothing has been changed.
I have changed.  I realiezed I did not belong to the able-bodied anymore.


The lecture went straight over my head.
The subject should have interested me.
It slipped out of my mind what the able-bodied youth wanted and gave up.  
The atrophy of mind was progressing at a fast pace.


The nightscape appeared pitch black, 
Reflecting the mind.


Gentlemen at the seminer pestered me for after-party.
While I declined, I was not free to turn on my heel and leave.
So here I am at the after-party, drowing my disgust in drink.
A patient with atrophy of muscle and mind hitting the bottle.


Even if I poured out my heart, nobody would ever understand, I was sure.
I ate and drank to vent my feelings.
The fried chicken tasted delicious.  The delights was available even for the atrophied mind.
Ms. Grasshopper laughed carrying me on her back.
I smiled coyly and then laughed.
I got a smile from Ms. Grasshopper, who had been a stranger one month ago.


Let's put the atrohy of mind on the shelf for now.
Something good will happen during the three day weekend.
I'll give it a shot
To believe in time to wait for love.


My life style is to extend time to wait.

Poem by Maria Franki

Edited and translated by J. Ujiie

©2011

Magic Bullet Act II

February 9th


KP came in the morning.
I didn't want be alone so I asked him.
Shortly after Mr. K arrived.


Let's start.
Mr. K applied the ointment gliding along over the spine.
Tap tap tap Mr. K tapped it in.
Tap tap tap Mr. K's hand rise and fall
Along the spine down to the tailbone
My blue spots on my buttocks are almost exposed.
It was a close call.  I still feel as bashful as a maiden is.


As I'm desperate for the cure, I'm determined to accept anything.
Tap tap tap one hour has past.
Tap tap tap moved to the neck.
It feels good,
Just as a massage does.
I'm at ease with K.P. by my side.


$150 for a bottle of ointment.
I said it was expensive.
KP said it would worth if it works.
That's true.


After the tap tap tap session, KP and Mr. K left.
I laid my weary body down alone.
It would worth if it works, but my body was lead.


KP came back in the evening.
We went out to the neighborhood Pakistani restaurant.
No problem with the wheelchair
It glided 
Fast.  I watched the familiar scenery flow by.


Confined to a wheelchair,
I look forward to dining out as my only pleasure.


The sun set and dusk started to gather
Another night to spend by myself approaches
As I can't roll over, I pull the fabric of pajamas to roll my body over.
If I lose my muscle strength in my hands, how could I roll over?


Without moving I would see the morning
Without moving I would see the night
And my body stays in the same position
Discrepancy between my mind's needs and my body.


I beg you to
Spare me the strength just to pull the pajamas as long as possible.


With doggy bag we are home.
I thank KP for pushing my wheelchair.
If I can say goodbye properly when he leaves
I am sure tomorrow will be a wonderful day.

Poem by Maria Franki

Edited and translated by J. Ujiie

©2011