Drive Yokohama

March 20th

The electric home care bed was installed in the living room. The new chapter of Maria's journey begins. This is the second day of her waking up in the living room. Maria, with the help of her friend Norippe, re-configures her apartment as well as her life.

Sorting out things to discard.

Cassette tapes, DVDs, Plates, clothes 

I don't need most of them.

We decided to give them away for recycling.

A bag full of my stuff

My precious belongings; I want somebody to use

My shoes, my crystals and my party dresses.

Things of the past when I had fun

I walked down Park Avenue glammed up.

Carnegie Hall and the Lincoln Center

Symphony, ballet, Christmas

The Prince Tower Park Hotel, which has changed my life.

I had great times at parties I worked for.

The champagne ball, Christmas party, casino, the new year's party.

I greeted guests with a big smile as receptionist till

My cheeks were sore.

1:00 pm we drove to Yokohama.

It was my first outing in 10 days.

The blue sky, driving; wind blowing on my cheeks.

Why do I have this illness?

At midnight, I organized my room with Norippe.

Sorting out one by one

Opening and closing one drawer and then another.

Feeling hungry, we smiled at each other at 2:00 am.

The tomorrow is coming

When Norripe leaves.

Will I able to hold my tears?

In these days it's hard to bid farewell.

'Cause it could be the final one.

Poem by Maria Franki

Edited and translated by J.Ujiie

©2011

A Pair of Fabulous Shoes

March 19

A walker and handrails for the bed were delivered.
When I was in the hospital, I could still walk with a walker.
What happened?  Today, I can't walk even with the walker.
My thigh muscles can't hold up the weight of my body.
The message from my brain won't travel.
It is not about the force of will.  It's a different line of command.

I take a shower.
I am wobbly and I can't wash well.
It's different from a week ago.
My neurons are being destroyed rapidly.
Today is Saturday and it's a day off.
But the destruction is 24/7.

We went to a clothing store
My first shopping in a while
I bought a red bag
And a cute spring scarf.

Norippe shopped
A black leather jacket, a scarf
And a leather shoulder bag.
Everything is cool.

It was fun, isn't it? The retail therapy as usual.
It was a good deal.  I'm so excited.
I will place the purchases next to my bed.

I found a pair of fabulous shoes... but... I let it go...'Cause I can't walk.

Norippe cooked dumplings from scratch for dinner.
10:00 at night.  A steaming pot.  Party for two.
A condensed time.
Will I see Norippe again?
Will there be another time?
I am collapsing.
A shadow is closing on.

Will my consicousness remain in this world?
I'll prove when I pass away.  Watch me.

Poem by Maria Franki

Edited and translated by J. Ujiie

©2011

Memorial Day of the Life to Live Alone

March 18th

The bed I bought last July.

I bounced, lay and sat on it to decide to buy.

The bed I fell in love with.

I thought I would use it for the next 10 years.

Nevertheless

I have to say goodbye today.  I have to let go of it today.

I am sorry. I couldn't use you for a long time.

My new bed is a rental one.

An electric home care bed.

Narrower than a full size bed with

Head and foot adjustment would make it

Easier to sit up.

It would make it easier...but

I wish I could be on a regular bed.

On a regular bed, with a normal body, living an ordinary life.

I stretch legs and arms, then open the curtain wide with one hand.

I make a coffee.

I pour aromatic coffee for my beloved.

I haven't forgotten ... how it feels ... but ... I will never have ... such a morning.

Naoko Ma came in the morning

Despite the radiation scare

To assist me to use the bathroom.

I have become a person of assisted living.

I was born to the fate to walk unaided.

I am searching for the way to live single-handedly.

Poem by Maria Franki

On this day, the local government caseworkers in charge of disability benefits and the representative of the home care provider came to assess her needs.  Maria's life involves three kind of social welfare system, one for home nursing care, one for disability, and one for intractable illnesses.  With all the application procedures not much different, it gets confusing.

People came and went.  The one from the rental bed company, the representative of the home care provider, the caseworker, Naoko ma, another colleague of hers, Ms. Grasshopper.  Maria writes, "They came to my apartment and they are creating a network."

KP came, again.

And Here comes Norippe from Nagoya

With a large backpack full of food.

Huge quantity she brought.

It must have been heavy.

Noriko ma is tough.

She lifts me up amd carries me to the bed, places me in the wheelchair.

She has learned a lot from her own experiences.

I can learn a lot from her on my third day of immobility.

Thank you, KP.

You gave me a massage,

While repeating, "I'm tired,"

You wouldn't stop until I say "It's enough."

You are kind deep in your heart.  I know.

The day I would say "Goodbye,"  I hope it will not come.

Poem by Maria Franki

Edited and translated by J. Ujiie

©2011

A Dream of the Days Long Gone

March 17th

I failed to

Stand up from the bed.

I planted both feet on the floor and

Pushed away the bed with both hands to raise myself up...

Oops, I failed.

Watch out!

On the spur of the moment I fell back on to the bed.

If I had fallen forward, I would have hit my head and died.

I've learned what it means not to have working muscles.

Yes I know I have ALS, but this is my first time.

I can't tell when I fall until the last moment.

I waited for Ms. Moriwaki, the housekeeper, on the bed

With my body lying in a twist, I couldn't reposition myself to stand up.

I waited for Ms. Moriwaki lying twisted.

I'm cold.

I can't reach for the blanket.

Ms. Moriwaki came.

She helped me to move to the shower.

I took a shower on a chair.

My left arm wouldn't rise.

I shampooed my hair, praying for no more earthquake.

It smells good, this shampoo.

Poem by Maria Franki 

Maria's day starts like this.  Every morning she finds something she can't do anymore, and waits for somebody come quietly and patiently.  And she appreciates something so ordinary for us, like the smell of her shampoo.

Then her day starts to get busy.  Her colleagues, her friends, her home care providers come one by one.  On this day, after Ms. Moriwaki, the housekeeper, left, her friends from the work, Naoko ma and Ms. Ijichi came bringing lunch for her.  With lunch they brought pieces of her life before illness, laughter, gosship, political discussion, etc.

They left.

A registered nurse and a physical therapist came from the visiting nursing station.    From now on they will come twice a week for check up and physical and occupational therapy.

They left.

Then a nursing care worker came.  They will come to assist her on weekends.  There are only few nursing care providers available for weekend services.  Usually family members can provide care on weekends.  Maria does not have a family.

They left.

Mari came.  She always brings her home cooked meal.   On this day, she brought soup with pork.  Maria   recognised that the soup was full of love.

Mari left for work.

Ms. Moriwaki came again.  Maria used the bathroom in a wheelchair Naoko ma brought. It's better than using a pipe chair.

Ms. Moriwaki left.

After everybody left, the room is suddenly quiet.

Beyond the curtains, it's already pitch dark.

I met new people.

If I were not ill, I couldn't know those wonderful people.

KP came.

He placed me in a wheelchair and I traveled all over the apartment.

Using a wheelchair to move around in the apartment would work.

I'll try not to complain much.

We ordered sushi from Matsukan Sushi Restaurant

We were happy with the quality and quantity.

Where did the fish come from?

The beautiful scenery, the beautiful sea, a fishing village with abandance, my home town.

It reminds me of the earthquake.

I'll see you again, Mr. Mayor

Hang in there.

At night another earthquake.

I'm scared.

It's reassuring to have KP beside me.

It's really assuring to have somebody with me.

I wish I had a family.

I should have created Maria's family.

A dream of the days long gone

I talked to Bob

Today.

Poem by Maria Franki

Edited and translated by J.Ujiie

©2011

Just 4 cm, All 4 cm

March 16th

The overnight guest, Kochi, left at 5:30 am.
"What should I do?"
It's not even 6:00am.
It's too early to call MAMA.
I can't get up without assistance.
Well, it's all about call of nature.

I tried to stand up by myself only to find
My left leg fail.
I can't stand up.
It's impossible to walk.

Walking and going to the bathroom, I gave up on and
Went back to sleep.
I dozed off lightly and had a pale dream.

8:00am
MAMA came to
Rescue.
I complained to MAMA that
I'd been waiting for her to do this and that and
I couldn't walk anymore.

MAMA sat next to me, and laid her hand over me quietly
With silent tears.

I hold onto MAMA and placed myself on a black folding chair,
Beneath the chair, a bath mat was placed to
prevent scratching the floor.
Slowly and deliberately, MAMA moved the bath mat,
With the bath mat, moved the chair, and with the chair, moved me.
In the same way Mari and Naoko ma move me,
With my feet drooping.

10:30 am
The local government disability certification officer
Came to appraise my home care grade.
Re-appraisal was necessary since my disability progressed.
I was grateful that my case worker Kikuchi attended the review.

The housekeeper Ms. Moriwaki came
She is my hands and feet.
When I see her face every morning, I feel relieved.

In the afternoon, I am left alone.
When I'm not working, I am always alone.
I might not be able to work.  This could be it.  I'm afraid I won't be able to go on.
I'm turning into a has-been.

Ms. Grasshopper stopped by.
The 4cm board I declined since I couldn't walk anyway,
the board to step over 8cm difference of the floor height
I changed my mind again and asked her to buy it for me.
The store was already closed.
I can't step over 8 cm
Because I couldn't make up my mind.
When she said she would go to buy.

Dusk.  Left alone. Azabu Juban, in the room.
I'm hungry, I said to myself.
To the fridge in the kitchen, less than 5 meter away  I can't walk,  I can't reach.

Watanabe and Ando came
Onigiri, Mari's home cooked meat, potato with fish roe
Japanese tea.
I finally had today's dinner.
Gochisosama.

Midnight
I practiced to
Walk to
The bedroom
15 steps
gasping for air
over barrier of 8 cm
One step at a time.

Poem by Maria Franki

Edited and translated by J. Ujiie

©2011

Progression of Symptoms II

March 15th

A sleepless night, a restless night
I woke up breathless to find
Only one hour had past.
I took a deep breath and
Still felt breathless.
I took another deep breath
Another and then another.

The earthquake is chasing after me.
The monster swelling up black and large, faster and faster.
I broke out in a night sweat.  These days
I dream only a dream of requiem.

Mari is giving me a foot massage.
It feels so good.  My skin without muscle tone is delighted.
From her hands love flows in.
I had a stinging sensation deep inside the nose.
Why I feel like crying when I feel love.

We chatted about this and that, and important things.
She cooked breakfast and helped me to take a shower.
Fried rice and Chinese soup.
I felt I can start my day.

11:30 am
The housekeeper Ms. Moriwaki came.
She did laundry and cleaning for me
Always smiling.

12:00 pm, my caseworker Kikuchi came.
He arranged care providers to visit every day.
We have to change the disability grade.
Nurse's home visit is arranged.
My condition has progressed so.

Soon, Naoko ma came
With a lunch box.
There could be radiation outside from the nuclear plant.
When you see me, you cry, and when you leave, you cry.
Our friendship has been deepened.
It's been 10 years.

Bob called
Sleepy voice.
Isn't it midnight there
in Rochester?
Midnight conversation and Midday conversation started between former wife and husband.

Bob researched about fukushima nuclear power.
Yes, it's your speciality.
I've forgotten about it.
He gave me advice about wind direction and clothing.
Again and again.

It's same as it was, the tone of your voice.
It brought back memories.
We searched for words, and we found, "Talk to you tomorrow."
My heart felt warm.
We live in the past.

4:00pm
Kochi came
In a suit.
She looked different from weekends.
She looked like a big sister, a business woman.
In the kitchen, she is talking on a cell phone,
Reliable and decisive.
I envy you, you can work.

The dinner.
Potato salad with the potato my sister grew.
My Sis' potato is yummy
It taste even better with fish roe.

I'll call Sis tomorrow.
She is taking care of our home.
The home I will come home to some day.
I'll pray for peaceful Japan.
We will build peaceful Japan.

Poem by Maria Franki

Edited and translated by J. Ujiie

©2011

Progression of Symptoms

March 14th

I woke up to severe twitching characteristic of ALS
Fleeting twitches of the muscles in the back, chest and arms.
The twitching is getting more severe these days,
Followed several days later by weakness and atrophy.
I know because I have eight months of experience.

This morning, I fell
In the bedroom.
Ms. Grasshopper carried me back to the bed.
The morning when I can't walk has finally come.
Ms. Grasshopper left for work.

MAMA will come in a while.
I'm afraid to walk, so I wait still.
If I fall, it's over.
Neither of my right arm nor left arm has strength.

Naoko ma called.
I told her the progression of symptoms.
Informed, the caseworker came immediately.
Since the phone is dead, he came to my apartment directly.

My care schedule should be changed accordingly.
Without assistance, I can not go about my daily life.
I was made aware of,  I was assured of, once again.
I AM disabled.

8 months ago, I could do anything by myself.
It is an illusion now.
I believed I would get well,  I wanted to believe,  for the past 8 months.
Silly me.
Pollyanna, I was.

My caseworker, Kikuchi, worked out my care schedule.
I run out of breath when I speak.  My symptoms progresses as the Doc predicted.
Is my body varacious or was it the doctor?

Kikuchi left and MAMA left.
I was left alone.

My ex-husband, Bob, called.
We talked about Fukushima, Power plant, meals
We talked about this and that for more than two hours.

Then we got to the heart of the matter,
Why did we end up splitting up.
After all these years, all the more reason things we could tell.
Neither of us utter the word, love.
It is better that way.  That will do.

7:30 pm
Mari came with
Chinese style vegetable soup.
It was good.
Steaming hot.
With steamed buns.
It reminded me of Chinatown in NY.

We had fun together in NYC.
Good old days.
Anyway, somehow I am happy now.
You cooked this delicious meal for me.

If we have a reunion in the heaven,
"Maria, you would be the happiest one."
Mari said.
Loved by everybody.
Is that so?  It could be so.  My feelings went round and round.
I'll be waiting, up above the sky.

CM came back on TV.
Until yesterday, they only reported 100% earthquake news.
In such a way, people's memory fades, and the mind prepares itself to move on.
The news flow away vainly.

Just like the life does.
It stays in the world for a while, and then it flows away.

Mari stays over in the living room.
Tomorrow morning, I'll say good morning, cheerfully.

Poem by Maria Franki

Edited and translated by J. Ujiie

©2011