Unusual morning

This morning has began like yesterday's morning.

Naina fed me from the "Kangaroo", gabe me my medicine, started my daily massage. Rogi slept after a white night (because of me), when I heard her cell ringing (she adopted Eyal Golan's song "mother" as a rington)

"Rogi is crying?" I asked N. that like me heard un usual voices from their room.

"go check" I said to her.

"She is on the phone, she is crying" N. reported to me.

I panicked. I haven't seen R. crying for a year and a half since she is with me. Something terrible happened if she is crying.

I waited in anticipation for her to come to the room.

R. came, her eyes red, excited.

"I spoke to my mom (in Nepal). There was a fire at my brother's house and his whole house was burned down. Thank god no one from the family got hurt, but the landlord's daughter, a 20 years old girl, was burned to death".

"How this happened?" I asked caught up in her excitement.

"My brother was not at the house at that time" she said "my sister in law took the two youngest children to my parents. The oldest son, 11 year old boy, stayed home with a friend. The children smelled gas from the main tank of the building, the landlord's youngest boy went to check the tank with a lighting candle (!) in his hand and the fire burst into flames.

Since that the tank is near my brother's room the flames caught up in the drapes on the window. The kids were panicked and spill water all over the floor which intensify the flames. My nephew ran, hide in the bathroom and call for help.

Eventually, a 15 year old boy broke the bathroom window and pulled my nephew out".

By the way, her brother's children love Rugi tremendously and she sees them as they were her own.

"Thank god they didn't get hurt! I said to my brother, his only concern should be for the kids. I'll handle the possessions" said in relief.

That wasn't usual morning.

_______________________
Translated by Elinor

My blog

The first proof to that, what I write touches people's hearts I realized after I wrote Associations A-Z. The issues was written in order to be read by someone on my last birthday, and people said to me that I made them laugh and cry at the same time.

Miriam the social worker said I should do something about it. So Did Efrat the physiotherapist who thought so too and of course my friends but they are suspected in un objectiveness.

For the little operation I had, I wrote what I've been gone through and again I received many compliments from many people.

After the third article, my friend, Itshak, wrote to me: "I realy enjoy your writing. Open a blog of your own, and write in it every day. I'll be happy to read it!"

I didn't know a thing or a half about the blogs, and if my son Barak hadn't open one for me on that day maybe I wouldn't be exposed to it. That's how I began and the rest as they say is history.

Every day I create new record. Around 10 am my body is being placed near the computer and I write all that comes to my mind at the moment, with no pre planning.

I discovered this enormous value of such communication, especially to people in my condition who has no ability to express himself verbally. I have been given a wonderful opportunity to share others with my thoughts, feelings and other things that hassle my mind.

I found out that people interested in what I have to say. Who is waiting every day to see what I've wrote. Not only friends and family, but also strangers, which I didn't had other possibilities to reach to them.

I am following in excitement on my number of entering to my blog.

I started on 5.6.2008 with 40-50 entering a day. After 10 days there was one day that 208 people entered! Again, to see what I've wrote. I couldn't believe my eyes! But nothing prepared me for what had happened yesterday. 731 entering a day. Total 3200 since I started writing.

"It can't be" I said. "It's out of proportions!"

Barak has brought to my attention that a record I wrote was being advised on the first page of Tapuz and people entered to see what it's all about. That explains the 731 enterers!

Wow!!

We'll see how many will come back…

Any way I'm going on as usual.

(Translated by Elinor)

The dancer

ALS is a disease which I would call: the silent killer.

From that aspect she is like cancer. Moves silently, biting secretly every healthy area. Don't feel a thing! No pain, no burning, no nothing! She progress through the nerves system, affects the muscles. Not on all, but for instance, the intestine muscles won't operate without the swallowing muscles that don't work. They will atrophy not because of the disease but from boredom. 

Not that I don't feel pain at all. The muscles are getting shorter and cause enormous pains (massages help for a short time). They are getting shorten regardless to the body's esthetics, and creates odd shapes. On my right foot for example I have a permanent point, and it makes me feel like a ballet dancer. My right foot fingers ordered them selves like the rockers' symbol (Hadas found it out), my left foot got a twist inside and my right hand insist on flipping on her back, in a position of beggar.

Silently, each day a little more, my body is going to it's unknown way, which the end un known.

______________________________

Translated by Elinor

Published in Hebrew at 29 June 2008

The "Look"

  

At home, I tend to wear clothes that are comfortable for me. Pairs of Training in the winter, and in the summer cotton with lace, in    red, black or blue. On top, cotton shirt in the winter and undershirts without sleeve in the summer. Size 38 40 in the pants, and the shirt is 'small'. Almost always in a unitary color, but sometimes with print. Brassiere I wear only when I go out, because the bracket hurts my back.

 

On Thursday evening, I felt a need to change ambience, and offered to go outside. Not I had any desire, or time (I wanted to see my favorite program in the television at 21:00), to change clothes. I only wanted to take a small 'round' and return. The problem is, that in the area live in, it's not acceptable to go out not finely neat, and of course not without padded bra (beyond a certain age). I was seated in the wheelchair, Naina "ran" to bring my "going out kit", that includes: lipstick, comb, Armani's perfume, in case I will run into someone, who wants to kiss me. They put on my ultimate shoes, that they are wintery slippers, in the color Bordeaux, Colored with pink lipstick, a great amount of the expansive perfume was sprayed on both sizes, the look was almost perfect, except the lack of a brassiere. "Not mind the clothes ", they will think, "She is sick, so she's out of the contest, but without bra? - that   is too much!"  "Bring me a scarf ", I asked, so I could cover my "front". They searched something suitable, and found a scarf of velvet is blue, posh, and lay it on my neck. The truth, it was a little hot in the end of June, who cares. The important thing is :we got out!

 

If one evening you will be "sailing" your posh cars to the restaurant, concert or the theatre, dressed according to last fashion, wearing the finest jewelry, look outside the window. If you will see two foreign workers push a dressed peculiar woman, seated in a wheelchair, give up the air conditioner for a short moment, open your window, wave us hello, and SMILE. J

 

Translated by: Shell.

Who's got the longer one?

 

I 'went` to rest in the afternoon in the living room. My two "daughters" arrived, smiling at me.

"What happened?" I was interested " Naina asked me ", answered Rog`i, " if my "god" is as long as her god ", and pointed on their necklaces.

Naina, the Catholic, wears a cross, on a long bead necklace. She believes that god directs all her actions, and you have to receive everything in the love.  She marries a prayer every evening before the sleep and crossed.

Rog`i belongs to the Hindi religion and wears a chain that received from her friend.  On the pendant of image of full person with a long nose. This is the "intelligence god", by name: Ganesh, and by both its two sides, acorns by name: Rudrakshya that their role to influence the person that comes in contact with you, to think positive.

"I told her, that her is standing, and mine is sitting, that's why her god is longer" said R' laughing.

"And I think, mine went to rest and fell asleep while guarding me, that’s why my necklace is so short, even invisible!"

 I laughed, joining the joke.

 

(Shell, in the name of Shosh Zeevi)

Grownups don't cry

Tom is asking me: "grandma, when will you get better?"

I elevate my shoulders and taking them down, making a "don't know" face

"When will you get better?!" he makes it even harder. I'm answering, again, the same way.

"But you WILL get better, Right?"

At this point my feelings cant handle the pressure, and the tears start dripping out.

Turns to Gail:

"Mom, why is grandma crying?"

"Maybe she remembered something sad, Go make her happy!"

Gogi Is leaving the computer for a second, lay supine on the floor and making bicycle movements while making sounds

Toms shows with a red baseball cup, Rogi's and start dancing

I'm melting … and laughing.

"But , why did grandma cry?" Tom again.

"Grownups usually don't cry?!" he indicates from his own experience.

בהצלחה עם הבלוג מקווה שעזרתי,

של (פרפרזה המחודשת)

Getting Out

Last night I felt like getting out. I'm home most of the time, because just thinking of all the preparations takes all the fun out if it. It's so much easier to stay in the cozy nest.
Chilly breeze blew from the sea and I suggested the girls to take a walk outside. R. was not too enthusiastic and suggested the balcony instead, but I insisted.I'll spare you all the tiresome arrangements.We left the house.
"Where to?" R. asked.
I didn't want to meet no one so we headed west, where there are no shops."Back home, in India, you can't walk the street without encountering people", said N. "you actually have to work your way with your elbows".
R. spoke about the changes that occurred in Nepal. Though she hates politics and politicians, still she didn't like watching the king vacating the palace, after two centuries of monarchy. She said she's concerned about the new regime. And no, she's not sure what a republic is. She said that the youngsters leave Nepal to work abroad. One worker, supporting ten others who stay at home. "How can a country flourish this way?" She said. "If I were the president, I'd forbid them to leave".
So just like that, me and these two young women, who arrived from far away places which were nothing but spots on the globe for me, two women who now call me "mom", took a walk and discussed matters of the hours.Maybe we'll do it again today.
________________________
Translation: Danna Paz Prins

14. A Conversation Between Brothers

Tom and Gugi (Ron) riding in a car with the parents.

Father looks in the back-view mirror, and sees Tom crying.

"What happened, Tom?" he asks.
Tom, with eyes expressing his pain and hurt feelings, answers:
"I asked Gugi if he loves me, and he answered "yes!"
Then I asked him who he loves more, me or himself, and he said "himself." But I love him more than I love myself!" said Tom, still hurt, and continued crying.

_____________________
Translated by: Rina Shapira Original Hebrew post on 6-16-2008 14. שיחת אחים

13. How am I writing?

For all those wondering how I manage to write, here is a short description:


Wanted: at least two caregivers and one ALS patient.

First, arrange a comfortable seating position.
Take a regular wheel chair, and improve it with a stiff seat from the chair in the shower. Cover it with a special pressure-wound preventing pillow that costs 2,200 NIS (about $600 - R.S.). Then the two caregivers help the 'writer' onto the seat, and see to it that s/he sits upright!
It is necessary to put a foam-filled pillow from the kitchen (50 NIS) (about $15 - R.S.) behind the back, and prop up the head pillow so that the head (of course) won't drop backward (especially when laughing). It is also necessary to put a small pillow under the left shoulder, so the back won't lean left. Put the feet on the foot supports to foil the body's strong desire to slip down (even all the way to the floor).
Every step builds on the one preceding it, and if there is a breakdown, start all over.
Use a virtual keyboard, that shows on the computer screen.
Put your glasses on, and expect them to slip down your nose every few minutes.
Hold the mouse with both hands, positioned a bit to the left, and rest your two pointers, and middle fingers on it.
After a few words, call for help, because the positioning doesn't hold up.
When I get tired (5-10 minutes) I ask the caregiver to click for me, then I "only" move the mouse to the right key.

The result:

A new blog post
Fingernail marks on the fingers
Pain in the hands, legs and back
Adrenaline
And exhaustion.

________________________________
Translated by: Rina Shapira Original Hebrew post on 6-15-2008 13. איך אני כותבת?

12. Abandoned

The people around me are divided into two groups:

Those who are hurt - who I wrote about
Those who are offended - who weren't mentioned yet

I'm afraid I will be abandoned.

_________________________
Translated by: Rina Shapira Original Hebrew post on 6-15-2008 12. לבד

11. Short Snippets of the Day

• I laid down to rest in the afternoon on my side, with a pillow bolstering my back (so I won't tip over).

My legs felt as heavy as lead. I vocalized sounds of distress, and Naina (my caregiver #2) showed up.

"Och," I said to her, and she understood I meant the board (spelling board used for communication - R.S.)

I dictated: "I," and when I wanted to continue, Naina disappeard, as if into thin air. 

When I saw her laughing as she returned, I realized what happened:
I didn't notice that I fell asleep mid sentence! 

• Noa, my two and a half year old granddaughter, said she doesn't want me to go home with them, because if I do, no one will live in this house (mine).

• "The Jumping Finger"

Roji entered the living room with her face and hand all bloody.
"What happened?" I asked, alarmed.
"You won't believe it," she said, dabbing at the blood. "I made the bed stretching the sheet, when... My finger jumped into my nose! My nose is injured!"

...?!

 Unbelievable ?! ...

Translated by: Rina Shapira Original Hebrew post on 6-15-2008 11. לקט קצר מקורות היום

10. The Twins

M. and H. are my neighbors.

I first met M. 4 years ago, when I came to inspect the apartment (I had just bought, R.S.). She already took hers over from the contractor but in reality, lived in a construction site. We met in the parking lot. After she introduced herself, she invited me for coffee. I came over the following day. Her apartment was fully equipped, with new furnishings, all in their rightful places.

"My kids pressured me to leave Jerusalem," she said in a Persian accent, "because I was all alone after my husband died. I didn't want to move, so they took it on themselves to find this apartment for me. It's hard for me to get used to it, as I don't know anyone. I miss my friends, and especially the activities that fulfilled me. I had a subscription to the Jerusalem Theater, and enjoyed the plays very much. Maybe we can take out a subscription together?" she suggested.

"Sure," I answered without much thought, "why not."

Thus started the "relationship" between us, which resulted in a subscription that lasted 2 years. The deal was that I would drive and support her while walking, and she would brings candy for intermission.

Until I got sick.

I met H. through M. It so happened that H. bought the apartment adjacent to M.'s. She's a widow, of Iraqi origin, and she too has wonderful children. They're both the same age (70+), same hight, same stature, and complete each other's sentences. They're never apart. Be it to the market, the theater, or a walk, they're always together. That's why I call then "the twins".

M. wants to come for a visit.
"OK" I nod to Roji.

They both arrive with a box of Persian rice. They always bring something.

"Hi Shosh'ke, how are you?" they ask and kiss me. "You are beautiful," M. says. "She was always a beautiful woman," says H.

"Ay yay, what cruel fate," both say, "and for her of all people! Ay yay."

"And what is this instrument?" M. asks. "It wasn't here before."
"It's a feeding machine," answers Roji.
They put their heads together. "The muscles are atrophying," H. whispers, "so she can't eat."

"Ay yay yay" both say. "What can you do? It's fate. Be strong, Shosh'ke."

"I remember how she drove me to the theater, and how much she like the hot pretzel we had after the show. And I remember when she bought sofas," says M. "Ay yay yay, she doesn't deserve this! Such a good woman! Take care of her, girls (the 2 caregivers - R.S.), like you would care for a diamond!"

"When will you visit us?"
"I'll come," I promise.

And we part with hugs and kisses.

__________________________ 

Translated by: Rina Shapira 

Original Hebrew post on 6-11-08 10. "התאומות"