474. Forever Young

Yesterday, Roji and The Brunette (the 2 caregivers - R.S.) said that I have a secret which I am not revealing: how I keep looking young all these years. I disagree with them, as I see the ravages of my disease in my body, but I'll try to explain.

• First of all the appearance. Slim people, in general, look younger. Though not always. There are people who when loosing weight rapidly, grow old overnight. 
• Don't think about chronological age, but rather synchronize with your internal feeling.
• Eat healthy good. Decide that white sugar and flour are a sort of poison, and as such shouldn't be ingested.
• Eat only just as much as will almost fill you up.
• Drink plenty of water. Only water.
• Exercise. Not because you have to, but because it's important.
• Be curious.
• Learn something new all the time. My father studied English when he was 90.
• Be optimistic.
• Enjoy the small things and don't wait for big events.
• Enjoy your own company.
• Dress young.

__________________________
Translated by: Rina Shapira
Original Hebrew post on 5.7.13

462. I Discovered

I Discovered -
That doctors don't know anything about ALS. It's possible they don't know much about other illnesses too. That's why we, the sick, have to stand guard, and help ourselves.

That you can both eat or drink a vegetable salad. "I" put in a blender: tomatoes, cucumbers, carrots, celery, parsley, red pepper and cilantro, with a little water, and "shoot" it directly into my stomach (through the feeding tube - R.S.).

That there is no need to drip the food and water over an hour, when you can pour the same quantity into the stomach in 2 minutes.

That for those in the starting stages of the disease, I recommend to sit rather than lie in bed. One can sit in bed too, but it's better to sit in a chair with the legs reaching the floor.

That I tried to say the 'a,b,c' and failed. I didn't know where to place my tongue. To the "newbies", continue to say words, even without vocalizing, so you don't loose the ability to talk.

That exercising isn't a punishment.  It helps the blood flow and keeps the muscles toned. Don't depend on physical therapy. I'm allotted 40 minutes per month. Exercise every day.

That a cup of fresh tomato juice is a good replacement for laxative.

That doing something to take your mind off your situation, like blogging, does the job.

That taking a shower in the shower is much preferred to washing up in bed.

That it's better not to wear a diper. It's sufficient to spread it under you.

That you need to drink 6 glasses of water a day.

That it's senseless to try to extend your life by 2 months, while destroying your liver. That's why I stopped taking Riluzole.

That you can use a cough assistant machine instead of "Deep Suction."

That it's not worth it to get depressed, you need to get out of it too.

That we are not dying.
___________________________
Translated by: Rina Shapira
Original Hebrew post at: 462.גיליתי on 4/4/13

Servitude

I'm a slave to my body. Let's start from my head.


My eyes are dry; I use drops twice daily to fight the dryness.

My lips are twisting, so I exercise them to avoid it getting worse. Roji also massages them.

I strengthen my arms by exercise, and the fingers by clenching them into a fist.

Moving on inside to the stomach. I can't tell if my intestines degenerated due to the disease, or because they didn't experience real food for the past four and a half years. In any case, I started eating soups and even a hard boiled egg, only to get constipated for four days.

The doctor who installed my PEG said, that ALS patients have a small stomach. Now I understand why, because we are advised to eat and drink using a drip system. I started dripping the food and water at once, to increase the stomach capacity.

I pay most of my attention to my feet. I tie them to a box, securing them with elastic, to sraighgten them. The rest of the time, I wear canvas shoes and turn the feet out. The purpose: try to stand up.

What did I forget? Oh, the two wounds that won't heal, the head, taking care not to get pressure wounds, and more.

If this isn't servitude to my body, what is it?

I want to be free!

__________________________
Translated by: Rina Shapira
Posted in Hebrew at 456. עבדות

Obama's Visit (to Israel)

Obama looks like a perfect Hollywood actor. The athletic body, his clothes, the way he moves, his speeches, everything was perfect. I found one fault in his perfection. Did you see how he write?

Where's Michelle? Too bad she didn't come. Our Sara'le (Bibi Netanyahu's wife - R.S.) accompanies Bibi everywhere.

__________________________
Translated by: Rina Shapira
Posted in Hebrew at 456. ביקור אובמה

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