2013: Posts are continuously translated and added to the blog with their original dates

Tuesday, July 1, 2008

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

Monday, June 30, 2008

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!
We'll see how many will come back…
Any way I'm going on as usual.
(Translated by Elinor)

Sunday, June 29, 2008

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

Saturday, June 28, 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.

Friday, June 27, 2008

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)

Wednesday, June 25, 2008

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

Monday, June 16, 2008

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

Sunday, June 15, 2008

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
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

Wednesday, June 11, 2008

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"

Tuesday, June 10, 2008

9. Kid Talk

Tom, who will be 8 years old next month, gets a call from Tamara his girlfriend since nursery school.

"Tamara want to sleep over again." he tells his mother.
"Can she?"
"Yes," answers Gail, despite having her over 2 nights ago.

"I'm at my grandma's," he says.
"Say 'hi' to her," she says.
"She can't reply, says Tom. "She's ill."
"Don't offend her," Tamara scolds him.
"Grandma doesn't get offended. Everything makes her laugh. Right, Grandma?"
"Right," I nod!

Translated by: Rina Shapira
Original Hebrew post on 6-10-08 9. שיחת ילדים

Monday, June 9, 2008

8. Making Up

Nuchkit and Ayaluli (twin granddaughters), the 2 1/2 year olds, arrive for a visit with Mama Tammi and Papa Barak.
After a hasty 'hello', A. runs to the far end of the sofa, and builds a house out of 5 pillows.
"I want the dogs" she demands.
"And I want the green doll", says N.
Tami brings my decorative toys from my bedroom.
A. occupies "the house" with the 3 dogs. Her lips break into a smile exuding joy and satisfaction.
N. is approaching. "No!" yells A. "Not here!"
N. continues on her way to "the house".
A. Stands up like a cobra, jumps on A. and squeezes her cheeks with all her might.
N. bursts out crying, turns red, and tear of pain and humiliation sprout from her blue eyes.
Tammi separates them and Barak hugs N.
After N. calms down, she turns to A.:"Why did you hit me? it hurt! Say you're sorry!"
"Sorry," says A.
N. reaches out her hands for a hug.
After repeating 5 times "We have to go, as the girls are tired," Tammi finally believes her own words, and they are on their way out.
"Can I take a dog home?"
"And the doll too?"
Translated by: Rina Shapira
Original Hebrew post on June 9, 2008: 8. ההתפיסות

Sunday, June 8, 2008

6. The Ring

My friend Dalia is a character.
She's all about drama. We were talking on the phone daily for 20 years, until my speech was taken away.
She's a large woman, in body and spirit. I heard that she use to go to work in broad rimmed hats and heavy makeup. She was considered cooky. She buys clothes at Bezalel Market (like a swap meet, R.S.) not because she has to, but out of principle. She won't pay more than 50 shekels ($13, R.S) max, for a dress. But she'd rather pay 15 shekel ($4, R.S.).
Today she's back on a diet, # 37, or #8, she can't remember. She dropped 5 KG (11lb, R.S.), but her goal is still a long and painful way off.
A hard knock on the door. It opens wide, and Dalia stops in the doorway in her full glory. "Hello" she announces. "How are you?" She walks in after a few seconds.
She always comes with riveting stories. Today too.
"Don't ask what happened to me this week!" she says. "As usual, I was very tired after a hard day's work, and I fell asleep on the sofa in a T-shirt. At 10 PM the door bell rang, but I decided not to open the door. If it was family, they would have let me know they are coming, I thought. I was also half naked, so I ignored the ring and went back to sleep."
"The next morning, as I was going down the stairs, I saw an ambulance, and several police cars in front."
"What happened?" I asked. "The neighbor from upstairs was beaten up and robbed," I was told.
"I went up to visit her yesterday," she continued,"and don't ask! They punched her in the eye, broke one of her teeth, gagged her with a rag and taped her mouth shut, and tied up her hands and legs. They vandalized everything inside. She managed to get to her next door neighbor, hopping, and ring the door bell with her chin. She had to be hospitalized. I couldn't sleep for 3 days, thinking it could have been me!"
This is Dalia
Living a life at the heart of the storm.

Translated by: Rina Shapira
Original Hebrew post on June 8, 2008: 6. הצלצול

Saturday, June 7, 2008

5. Dad's Visit

Dad came for a visit. He'll be 90 in 3 months. He travels by bus with his caregiver, with goulash soup, compote, apricot jam, and cake for his little girl. It's the least he can do to help her in her condition.
They came to say goodbye before their trip to Romania.

My dad is a man's man.
He survived WWII in Russia, digging trenches in the snow. He contracted typhus, and survived that too. He spent five years of his young adult life as a POW. He owes his life to his strong physical and mental conditioning.
He isn't very tall, but leaves the impression of a 6 footer. These days he resembles Kishon (a Hungarian born Israeli writer), and Peres (Israeli president).
A long time ago, he had dark wavy hair, muscles and style.
I remember that he was attacked by 5 dogs one night, and prevailed.
I, too, had the honor of experiencing his heavy hand, when I was six. Dad was teaching me how to write the number 8 in a single stroke, and I failed repeatedly. The next day, I proudly showed him my successful try. He demanded that I repeat the success in front of guests, but I failed again. Then came the slap on my face, which I never forgot. Because I lied! Throughout my life, I got 3 of these "educational" slaps.
Dad left his position as a Hungarian journalist after the 1956 Hungarian Revolution, because antisemitic demonstrators were screaming "Jews out!" He couldn't endure it one more time.
In Israel, he performed hard physical labor, which could possibly have contributed to his longevity. One time, a piece of asbestos roof fell on him. He walked away with superficial scratches to his head.
We had a chicken coop for our home use. Everyday, he slaughtered a chicken. He caught mice by the trail and drowned them in a water bucket.
He passed on to me his love of nature. On Saturdays, he used to take me and my girlfriends on walks in neighboring orchards. Or, we would go to the beach in Tantura (famous natural harbor beach South of Haifa), for the entire day. We set up a tent and spent the day in the water. He saved my life once, when I got caught in a current.
When I was small, he built me a wooden doll house, and stilts too, and a pedal powered car for my brother. He made a garden swing set for my kids.
On cold Saturday mornings, my brother and I would get into our parents' warm bed, settle under the down comforter, drink hot chocolate, and sing. In Hungarian. From time to time, I would see my parents dance to the sound of our record player. Dad taught me how to dance the waltz and the tango.
He prepped me for the military service. We used to run together for miles around our village.
The day I joined the military, he ran from Pardes Hanna (where we lived) all the way to the Caesarea Junction (at what is now Route 4) to wave me goodbye, as he knew we would pass by. When I used to come visit my parents with the kids, he would build a tent in the bedroom, and tell the kids stories he made up. He would place the kids at the steering wheel of a parked bus, prying open the bus door for them. When we would leave, he would chase our car until he couldn't see us any longer.
Eight years ago he had a stroke. He forgot the way home, his speech was garbled, and he forgot the game of Bridge he so loved. He healed himself on his own, without any medication. With the help of a computer, he regained his self and clarity of mind. It took a year. Bridge is the love of his life. He teaches and plays the game 5 days a week.
He had a mobile phone and a computer before I did. He kept nagging me about it, "How come every foreign worker in Israel has a mobile phone, but you don't", until I finally bought both.
He is a "newspaper worm". Every fragment of news interests him. During High School, he would lecture me about history, and teach me Karl Marks' theory. He had big plans for me, and trained me to think big, to see the big picture.
He jokes that he reads the paper in bed, because he falls asleep within 2 minutes, and if he were reading a book, he would hurt himself much worse, as the book would fall out of his hands.
He was always interested in women. His prior caregiver fell in love with him, and he had to replace her, because of her jealousy fits. She was a good-looking 50 year old blond chick.
He has a rare sense of humor. He is both full of jokes, and has a funny view of the world. His caregiver says she's laughing all day long. He also sings from morning till night. He is on his way to entertain his hosts in Romania  He won their hearts last year, telling stories about Israel, joking, and even organizing an evening of singing. They adored him, and he longs for that.
He'll visit the bathes, walk in the woods, eat what he loves - lots of butter, whipped cream, and espresso with 3 heaping spoons of sugar. He will sleep well, and make a routine out of this.

He came to say goodbye. He started the countdown 2 weeks ago.
Enjoy, my Daddy, for me too.
I love you very much.
Your little girl.

Translated by: Rina Shapira
Original Hebrew post published on June 7, 2008:  5. אבא בא לבקר

Thursday, June 5, 2008

4. A Day In A Life

I got up, got dressed, brushed my teeth.
Just kidding. I wished...!
Since my little surgery, I sleep 3-4 hours a night, and that too, interrupted. At 6:30 in the morning, R. got up and gave me my meds. Half an hour later, she connected me to the 'Kangaroo" which started dripping breakfast directly into my stomach.

I was utterly exhausted.

Today's plan: get a haircut.

At 10AM, as I am getting my daily massage, a call comes from the hair salon, "Roy can arrive in half an hour," the hair washing assistant says. "No!" I protest, "in an hour!"  "Quick, quick," I tell R. in Hebrew. She understands, but gets stressed, and when she's stressed, she loses her head, which operates on 'shanti' energy.

Roy arrives. He places me in the living room in front of the computer, and without wetting my hair, and equipped with scissors and a comb, attackes the enemy. Gail calls. "I'm arriving to take Mom for a check-up at the hospital. Be downstairs in 10 minutes." "No!" I plead, my mouth full of hair, "20 minutes!" "I have to be back by 2," she says. That leaves less than 2 hours.

Roy wins the hair battle in 5 minutes, and before I realize it, he's gone.

R. gallops with me to the bathroom, leaving behind a trail of hair, that will help us find our way back. She rips my sweats off, using it to dust off the hair that has gotten all over me and the floor. I shoot off orders, and she scurries around the house. Drenched in perspiration, we're down, in the Jeep, on time.

Barak is waiting for us at the hospital, and leads us back to the floor where I had the surgery.

I am to see Prof. Weisman and Simcha. We have no appointment. Every time the door opens, a gang of escorts tries to force themselves on the Prof. Barak storms the door too, and on the third try - success! We're inside.

The Prof. looks through my file, and without as much as glancing at me, he asks "Is it you who sent me the letter? What a great letter. Let's see what's the problem." Like a magician, he pushes - turns - pulls the hose from my stomach, and says "There's a small wound here that was bleeding. Barak, you wanna see?" Barak doesn't, but R., awakening from a brief fainting spell, takes a look. "Does it hurt?" he's asking. I nod yes. "Not enough", he says, "others have it way worse." We're out in 3 minutes.

Gail is waiting in the car with Gugi, who's sick. "No more fever," she says "only diarrhea." "I hope Mom won't catch it," says Hadas on the pnone. Hmmmm. R. holds my head during the ride home, because I can't breath with my head dangling. I get out of the car, and almost get run over as it starts moving again.

The house is a mess, just a we left it, with hair in the living room and corridor. I go straight to bed and get connected to my feeding tube.

R. takes my sweats and opens the balcony door. Countless clumps of hair find refuge in every nook and cranny from the breeze blowing in. I can't stop laughing. This was so predictable...

The doorbell rings. I'm not expecting anyone.
The man at the door looks familiar, but he doesn't recognize me.

"I'm the Social Security investigator," he says. "Where's Hadas?"

He approaches my room, his eyes searching all around. Hadas works for El Al (the Israeli airline), I write. "When will she be here?" Tomorrow.

Out of my room, he questions R. in a whisper.

I look in the mirror and I hate the way I look with my new haircut. A few stray hairs need trimming.

In the evening, I get a coughing fit. After using up a roll of toilet paper, I'm ready for bed.

It is 1:00AM.

Good night!

June 5, 2008
Translated by: Rina Shapira
Original Hebrew post at: 4. סתם יום בחיי

3. The Story of My PEG Surgery

Hagar, the amazing nurse, arrived with some homework.
"I have some news for you", she said. "You have to undergo a little surgery to install a PEG. It's a very simple procedure, really, 20 minutes, local anesthetic, and light anasthesia. You can combine this with other doctor visits."...
"Do I really need this already? I want a second opinion!" I cried.
"I already talked this over with Dr. Drori and she approves", was the answer.
A flow of self pity gushed uncontrollably out of the depth of my being, carrying out with it a gallon of fluids from every opening in my face. When all the fluid reserves were spent, I wrote:

Equipped with this scant information, on a fast, and with no liquid intake, I was on my way.
Gail drove, Hadas came directly from work, Barak of course, and Roji too.
Esti, my dear friend, who we found out works there - what a rare coincidence - prepared everyone for my arrival. Thus, I received a VIP reception.
I was first in line for the OR.
Before they wheeled me in, Barak called out "May it be a easy delivery."

A professor, a doctor and a nurse.
I handed the professor a sheet with a list I wrote of essential information for the surgery, like allergy to Optalgin (pain medication), antibiotic intolerance, low lung capacity, etc. Consequently, the decision was made to forgo the light anesthesia.
I knew it!
They started preparing for administering antibiotics directly to my stomach, and told me to concentrate on my breathing and to swallow.
To swallow?! Try swallowing a green garden hose while on your back. You can't get enough air through your nose even if the procedure lasts only 20 minutes.
The doctor said, "She won't be able to endure this."
The professor said, "Worst case, we will stop in the middle."
"Let's start!"
The doctor tried shoving the green garden hose down my throat, while they all yelled together, "swallow, swallow" (like, "push, push" at childbirth)

I really tried, but it refused to be swallowed.

At this point, the nurse took over, caught me by my throat, and they all looked happy.
I yelled that she should let go of my thyroid gland, but they couldn't hear me, or were too busy.
I couldn't breathe, so I turned my attention to the screen to view the inside of my stomach.

The rest faded out, though they didn't give me any drugs.

I emerged from the OR with a smile of relief. Five sets of eyes, questioning, calmed down.
"Sorry," I wrote on the board, "no baby."
In the corridor I was placed between two beds that kept changing every few minutes. My main concern was that my toes, which were hanging out of my bed won't go back to the OR without me.
I had a choice of returning home in a Jeep, or an ambulance. I chose the ambulance. I couldn't see myself climbing into the Jeep... I was placed facing against the direction we were going. I was being  hurled right - left - up - down, and kept praying that the basket with scissors on the shelf above me won't fall on my head. All the while, the paramedic was communicating with a phone friend about his approaching wedding. When arriving home I entered sliding amusement park style off the chair, because of the plastic cover.
My body reacted in a post-op trauma. Aside from gas pains, and the incision pains, my leg muscles reacted with severe cramping.
Ahuva (a good friend) came in the evening. "How did it go?" she asked.
"A nightmare," I whispered.
"A nightmare," she kept repeating like a mantra, until she left.

Hagar, the amazing nurse, came in the morning.
"How are you feeling?" she asked.
"so, so", I answered.
"The main thing is, you're over it", she answered.
Translated by Rina Shapira
Originaly posted in Hebrew: 3. סיפור ניתוח ה PEG שעברתי

Associations - A to Z

Air -  keeps diminishing
Ayala - my charming and smart granddaughter, with a discerning gaze, who I want that she remember me
Alone - I wasn’t, since I was diagnosed
Another - week passed

Barak - my first born, love, love, caring, dedication, knowledge, honesty
Beauty - important in life, in everything
Book – read aloud by friends, books that impacted me: “We Will Prevail”, “In the Name of My Family” , “Anna Karenina”, “Mila 18”, "Lady Chatterley’s Lover”, “Crime and Punishment”
Bodily modesty - I lost if two years ago

Close - the Far East got very close, so close as to see me naked in the shower  (reference to the Far Eastern caregivers( 

Dad - a rock to lean on, love, sense of humor, shaped my personality
Dreams - repeat themselves, sequential, very real, unpleasant
Dishes - beautiful ones at home, important
Dance - most liberating; no legs - independence, were beautiful; could dance weightlessly
Dependency - is awful, but the alternative is much worse

Eyes - good eye sight, observing everything, 360 degrees
Embarrassment - to run to the bomb shelter with the Nepalese and Indian caregivers…  to the sound of the Yom Hashoah siren
To eat - a falafel sandwich, in huge bites, to bite into an apple

Friends - all of you! seeking closeness, appreciation, openness, acceptance, help with  no expectations of reward
Friendship - a living concept

Gail - my eldest daughter, beauty, a good life, love, help, responsibility, organized, agility
Gugi - the grandson I took care of until he turned two and a half, love, want to touch, dying to get a kiss from him
Giora - my only brother, love, dedication, help, punctuality
Giving up - that which can’t be achieved

Home - the most comfortable and beautiful place I want to stay in
Hadas - youngest daughter, love, beauty, dedication, principles, care, expressing emotions
Heat - July, August, hard to endure
Hands - to touch, to hug, to caress, independence
Here - here and now
Have to - manage to accomplish all that one still can
Hardship - to continue managing a household by two strangers, without a voice, hands, and legs
Hair - no one succeeds in combing my hair the way I like it

Itch - hard to locate, crazy-making, maddening

Lightening - the strike of the disease (ALS)
Laughter - I like laughing, I like people who make me laugh. “Laughter is good for your health.” Really?...

Men - all the time, big love stories, heart aches, crises
Memories - all kinds, some beautiful, some very hard, the first at age 5 (love)
Maddening - to see a small spider running up my bare thigh in the shower, to inform the caregiver by ‘hm hm’ about the impending disaster, and hear her ask “the water is too hot?!” …”to shave the hair?!” …”move your leg to the right?!” … “to the left?” …”to bring the writing board?” …
Marriage - I thought it was meant for me
A missed opportunity - to declare independence (of the State of Israel) four days before I was born
More - a few more good years

Nothing - after death
Noa - my granddaughter with the golden locks, charming, smart, I want her to know me

Outing - fun, everywhere
Obstacle - life is an obstacle course, the disease too

Repulsive - changes with time and circumstances
Religion - I don’t need it to lean on
Rhythm - waltz

Shyness - the main thing that holds me back
Shoshana - my name on my ID card, teachers, administration, strangers, since age 9; Shosh - since age 18 till present; Shoshi, Shoshke - used by some to express love for me through nicknames

Tears - physical and emotional pain, frustration, the pain of others, too often
Tone of voice - quiet, relaxed, radiophonic(?) – look for better word

Tom - my eldest grandson, the one that expresses the most love, that hugs and  kisses, who believes in all his heart that a cure will be found that will cure me, and then I’ll cook chicken soup for him, and we will go running in the park

Vertigo - dizziness that I don’t wish for anyone to experience
Voice - missing it when in danger, inability to express an opinion, to explain, to sing

Wastefulness - not to pass on the enormous body of knowledge accumulated in ones  brain, before the end
Was - interesting, …I remember, …but not relevant
Women-friends - get up from bed at night to come wipe my tears; get soaked to the bone in the rain while trying to extricate me from a car, and then sit through a performance wet clothes; come by for a visit, if only for a moment, despite a busy schedule; bake a cake for me early in the morning, when her mother is sick, and she just became a grandma; come for a visit on the stormiest day in January to read me a book; encourage, encourage; share in my joys and sorrows; wear the red ALS wrist band
Why? - a question that Rodji (the caregiver) hates
Why - did it happen to me? I don’t dwell on it
Water - to eagerly drink up a gigantic glass all the way 

Zsuzsi: my given name

The end – but it isn’t over yet

Translated by Rina Shapira
Original post in 1. אסוציאציות מ-א עד ת