Sorry to talk about the bladder Issue

March 27th

From 12:30 to 17:30, 5 hours
It's my limit to hold
the bladder.

What about after hours?
From 22:00 to 7:30 next morning
9 and half hours
It's beyond my capacity
I can't hold.

Not being able to walk made me aware that
I used to go to the bathroom without even thinking about it.
I've never counted my trips to the bathroom.
I'd better consult my caseworker
Before I develop cystitis.

My symptoms are progressing so fast.
I've experienced the symptoms which usually take 3 to 4 years in 7 months.
It's too fast for my mind to catch up.
My mind is losing touch with my body.

Yesterday I could, Today I can't
This and that movements
I can't brush my hair, I can't hold up a mug, I can't move the pillow closer.
I can't reach for your hand.

I got a mail from Yuri.
She is coming, bringing me super healthy dinner

I asked Yuri a while ago
I want to do something for you. What would you like?
This is her reply

"All I want is for you to cherish your life fully one day at a time. I'm sure other friends wish the same. Your attitude toward life is a gift for us."

Every time I read it, I find myself close to tears.
I'm writing about the bladder today.
I confessed I had snapped.
There are many days I do not cherish my life.

Her words are too good for me.
To cherish my life fully
One day at at time, one hour at a time
one moment at a time
What does it mean to cherish a moment?

I am living with ALS
Yuri's friend said,
A.L.S. = Affectionate Loving Support
It might be a clue to cherish my life fully

5:00 pm
It's still light out
Beyond the curtains the dusk is waiting
I am sadly aware that
You are not coming.

The usual melancholy melody plays on PA speaker.

7 hours till midnight
I hope the wonderful time is coming
Love and hope and expectation

Yuri, I'm waiting for you.

Poem by Maria Franki

Edited and translated by J. Ujiie

©2011

A Cold Morning

In a cold morning the north wind blows
It's already March and still
The window is rattling,
Chilling me to the bone

I woke up.
I have to be grateful ... for what?
I am a mere vessel ... in which my life resides.

I closed my eyes tightly
And heard the wind far in the distance.

7:00 in the morning, I had the bathroom assistance service
For the first time.
Ms. Muramoto comes every morning.
I didn't know there was such an occupation.

My eyes follow the TV screen.
Through my nose, I breath.
With my ears, I hear the noise of daily life
My mouth shapes words
My skin receives love
My five senses I am grateful for.

I want to move and move.
To walk
to stand up
And to take a step.

10:00 am, the weekend housekeeper came.
I sorted my bags today.
I will still use this one.
I will donate this one.
I sort these and those.

The home care equipments supplier came
to remove the ambulatory aid poles.
The poles are for me to hang on to when I walk.
I can't walk and I can't hang on to.
Just two weeks of life with poles.
It's just like my short life.

Just before 3:00 O'clock, Ms Grasshopper came.
At 3:00 O'clock my hero, Dr. Okabe, came for a house call.

When I talk with Dr. Okabe, I feel good about the life.
It is as if a new medicine is being produced in my body.
The vital medicine working through my body.

Dr. Okabe encouraged me to go to NY.
He pushed my back with a caring heart.

Kochi came with food.
Party for three
Kochi, Ms. Grasshopper and me.

Chinese food.
Ms. Grasshopper brought strawberries and tangerines for desert.
I'm blessed with kind people.
I want to return the kindness.
How can I do?

I talked with Ms. Grasshopper till midnight.
Are we going to be together for a long run? or just a short distance?

So far our idea for the documentary is the same.
It's almost identical.
We seem to be destined to meet.
Tension and feeling of closeness
Both are important.

The north wind stopped.
Ms. Grasshopper is sound asleep.
She must be tired.
She had to carry me to the right and the left,
Move me to the right and the left.

I got a mail from my ex-husband.
He wants to see me in New York
Just by ourselves.
We will talk, a lot, about
Our past and the future.

Poem by Maria Franki

Edited and translated by J. Ujiie

©2011

Spun and Spun Out and Out

March 25th

My sister is sleeping beside me.
We slept side by side on the home care bed.
My sleep was deeper and wider than usual.
Two of us together made me feel safe.

Savory toast for breakfast.
Three kinds of pasta for lunch
Tangerines directly from the garden of Sis Kyoko.
Sweat and sour taste of first love
A seemingly happy family.

Mr. Kikuchi, the caseworker and Mr. Watanabe came
To meet my sister.
They introduced themselves to each other.
"Thank you for taking care of her. And then I hope you will continue to assist us."

And Then
My sister asked me about "and then"
I wish my symptom would not progress and I wish I could continue to stay here by myself, together.
And then ?  She asked.
"Think it over."  "Make up your mind soon."
She hit a bulls-eye.  She threw a fastball.
I don't know yet
I don't know what I should do.

My illness is progressing.
My body signals me.
But I don't want to go back to my home town, where my mom and sister live.
Soon after my homecoming, they will place me in a nursing home in
A town called Flat, the town I don't know.
The town nobody comes to visit me.

I am unwanted.
I am a burden. That's the truth.
I sensed the truth
Nobody wants to have anything to do with
The life of the invalid, the disabled, the incapacitated.

My sister left me looking for the way.
I feel for my way through "And then?" and "Then what?" in the twilight of my life.
I don't have much time left.

For the first time, I wanted to die.
"What would you do?" they ask, and I don't have an answer.
Every day I have to answer the question, "What would you do?"
I don't have future.
So why can't I choose the option of "death"?

The god has given me a ticket to the death and I am not told the time of departure.
If I knew, I would be afraid, I would be sad.
I'm a coward.

In the evening
KP came
He told me that the subway was packed.
I want to know about the world
more and more.
If I don't know anything, my dream to be a politician would be far away.
(I wanted to be a politician.)
(You would think I was dreaming, but I was serious.)

Immediately, KP left by himself to have dinner.
Am I going to wait for you?  Again?
I've been waiting for you all the time.

Again the air of solitude took over the apartment.
Let's try how far I could go.

I pushed my self up
I fell off the bed and collapsed.
A week made a big difference in my strength, my breathing.

New York Trip ... might be out of reach.
I have to make a decision tomorrow.

There are so many decisions to be made.
I am spun and spun out and out.
My mind is screaming like Munch's painting.
I am in a fit of insanity.

Crazy, somebody said.
Provoked, I became crazier.
I don't care about
"And then?," and "Then What?"

Selfish, somebody said.
I can't keep on smiling all the time.
Allow me to scream, allow me to get angry, allow me to bark.

What? The quality of life?
How can I have it?  Tell me!
Instead of telling me to hold on.

I know
the truth of my heart.  I want you to protect me,
Embrace me
Like the universe.

I'll promise I'll not get mad
Even when I'm suffering.

Oh God, let me live.
Is it selfish to ask?

Poem by Maria Franki

Edited and translated by J. Ujiie

©2011

Three Sisters

March 24th

I got a mail from Sis Kimi.
She is coming.
Since last night she flip flopped
She is coming, No, she is not coming.

Sis Kimi came.
Yuka came
Sis Kyoko came.

Along with two nurses and Ms. Grasshopper
My apartment is full house.

Naoko ma came late afternoon.
Sis thanked Naoko and Naoko thanked Sis
And I thought about the connection the fate made.

It's been long time since the family got together.
It seems so long ago.

It's been several years since I saw Sis Kyoko.
The time between melted away immediately.
We are sisters.
We look alike and think alike.
I had a belly laugh with my weakened abs.

I ate bean cakes
Made with home grown beans,
They reminded me of my mother
On this spring equinox.
Thank you for bringing them.

I hope the Shinkansen super express lines will recovers soon.
It's a line that leads to my home town.
Beautiful Fukushima
Where your future lies?

Ms. Grasshopper came late at night,
Delivering important things.
Green card and the receipt for new passport
I'll leave for New York on April 6.

Sisters and Yuka.
Good night from the living room.

Poem by Maria Franki

Edited and translated by J. Ujiie

©2011

Before I Know It

 March 23rd

I am shrinking
It appears no different today from yesterday.
I am smaller than I was one month ago.
I am much smaller than I was two month ago.
Before I know it.

9 o'clock in the morning.
Naoko ma and Maho came
Long time not see
Less than a week feels like a long time.

She placed my emaciated body in the wheelchair.
The deadweight of my light body.
My left foot has been lost,
Drooping like a dead snake.
My right foot is on the verge of death.

We chatted for a while.
I wish I could go to work with them.
I wish I could talk on extension line.
"Maho, you've got a call."
The office I've worked for 10 years is
Still fresh, very fresh to me.

Ms. Moriwaki worked for an hour.
Kitchen sink is spic and span.

I lay on the home care bed
Deserted.
I feel a little lonely.
It might be during such time when my body shrinks,
Shaken with earthquakes.

3:30
Mari came
To prepare for the NY trip.
Passport
Hotel
Flight
We discussed

All is up to my condition.
Will the small body be able to carry my weight?
I have to eat not to lose body mass.
Nutrition for my heart, nutrition for my body.

Subaru Care Center service representative came.
I retained the service for early morning and night house calls
It would ameliorate the bathroom situation.
Still 8 hours of holding time.

KP came
with a bottled water and sake.
Dependable, your mere presence is enough
We get along so well and that's why we quarrel, that was the old saying.

We will drink your sake at the next girls get together.

The home helper, Ms Ando, prepared dinner for me.
Chicken wings Norrippe had brought.
Macaroni Salad Maho brought
Ginger Tea sweetened with honey and oligosaccharide.
I am helped to be alive.

Before I know it, the time has come to say goodbye.
Before I know it, my heart has been thrown off balance.

Poem by Maria Franki

Edied and translated by J. Ujiie

©2011

In Fate's Hand ... How It Happened

March 22nd

The night before, Maria was facing a daunting challenge of holding her bladder overnight.  Her friend assisted her to go to the bathroom at 7:00 pm and left.  Maria was expecting her boyfriend would come to help her later.  She got an email informing that he would not come and she was feeling at a loss.

A sense of urgency I had, it is true.

For a person who can't walk, call of the nature is a compelling matter.

Even though I know I should not hold off relieving myself

I hold back drinking water and eating.

If you ever hold it you would understand

The sensation of holding a full bladder made me think

It was better not to drink or to eat

That was the best solution ...

One of her friends, Yuri, read Maria's blog entry and came to rescue after midnight.  She stayed for a while till Maria calmed down and went back to sleep.

Maria was surprised by the quick response to her blog entry.  "Thank you from my heart for reading my blog.  When Maria is no more, I hope you will remember me even a little," she wrote.

Early morning, in the really early morning

I heard the scrape of a key in a lock.

KP came.

I am half asleep

Feeling relief

I am delighted in full.

"Why didn't you come?"

"I have my reasons."

Yes, each life has reasons

You have yours and I have mine.

I'm sorry that I am pigheaded.

Blame my glibness.

ALS... the day will come when I can't talk, eat,

Pout, nor laugh.

I will be immobile.

That was what  came to my mind while pigheaded and

I felt sad all the more and

I picked on you

In a wrong way.

I want you to share

I just want you to pretend to share

That's enough for me.

The full size bed is not suitable for nursing.

I do understand.

The classy headboard is too high to

pull me up with shoulders.

The hand rails on both sides would make it easier 

to roll over.

I noticed now.

I called to exchange for a single bed.

How long I would be able to live in this apartment?

My life and my toilet problem are both 

In Fate's hand.

Poem by Maria Franki

Edited and translated by J. Ujiie

©2011

'Cause It's Raining...

March 21st

It is still ...

Raining

Window in the morning.

Maria had an appointment with her hair stylist.  The hair salon was in a walking distance from her apartment. But it was raining.  Norippe called a wheelchair accessible cab.  The cab fare was about $57 for a ride less than 5 minutes.  "If I could use a regular cab, the fee would be $9.00.  If I could walk, it would be for free," Maria wrote.

Maria's former colleague, Tomeko, came with home made sweets and a hand knitted lap blanket.  "I'll cherish it for all time," Maria wrote.

19:00 Norippe is leaving.

She hugged me, like an American,

Tightly, much more tightly than before.

For three days

She assisted me to 

Have meals

To take a shower

To go to the bathroom

To clean and organize the apartment and

To shop.

Thank you very much for your care.

I thought I could never go for a drive.

Sometime a friend, sometime a mother, sometime a colleague.

Norrippe, let's go on a trip together

In the next life.

It's quiet

In this room.

I am waiting for the one

I am waiting for KP

Coincidence or by telepathy

The moment I thought about him

I got a mail from KP

"I can't come tonight.  I'll be there as soon as possible tomorrow."

That's all.

What should I do?  I can't go to the bathroom tonight.

What should I do?  What should I do?

The diaper is far away.

I can't reach the medication.

I shouldn't have drunk water.

The last time I went to the bathroom was at 19:00

How long should I wait till the morning.

I can't stand up by myself anymore.

MAMA is away in Kyoto.

An uber practical problem I'm facing.

My pulse is beating fast

In the anxious night

Desperately waiting for the morning to come.

Poem by Maria Franki

Edited and translated by J. Ujiie

©2011