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Arle's Blogspot

A Candle For Crissie  

 

Crissie left us at 3pm on May 18th. 2006

It was a journey that she had anticipated for quite some time, and was completely at ease to talk about. For her this was a trip to be with HaShem. To be free of the pain she had to endure, to be free of the tiny room that she lived in.

Crissie lived the last five years of her short life in a controlled environment .

It was not a "bubble" as some people described it. It was a sterilized room. It was a room free of any germs or bacteria. It was also a room sterilized of any human contact.

The brain stem stroke she suffered completely took away her immune system.

Her doctors wore protective clothing and gloves and masks on every visit. Crissie said that they look like "spacemen"

Only her mom, and her primary caregiver Jill did not have to wear this "special" clothing, but they could never leave the house. If they left, it would take 18 weeks of isolation, in a separate part of the house, before they could see Crissie without the "special clothing"

Food had to be specially prepared and delivered, all clothing had to be sterilized. Everything had to be sterilized. Pencils, paper, books....everything.

To send something to Crissie, such as a gift, or even a postcard, it had to first go to the "lab" where it was completely sterilized before being brought to Crissie.

Crissie was a very well educated person, speaking several languages before her illness.

Crissie was struck down by a "brain stem stroke". The stem of the brain controlls every function of your body, every organ and every movement. And Crissie was deteriorating.

She was beset be seisures and strokes, and each one took its toll on her. These strokes took much from Crissie and a particular one took 95 percent of her memory, accumulated knowledge and life experiance,

When she woke up, she didnt know who or where she was. She did not recognise her Mom, nor did she remember anything.

As time went on, some memory came back. Some tiny bits and pieces Some very basic memory. Little bits and pieces here and there.

Crissie had to start again from almost a blank page.

She re-learned the English language again from the begining. She learned to read and write starting again from a first grade level. In the four years that I had known her, it was always improving and this is important to understand for anyone reading anything she had written.

Her doctor once described for me her level of understanding after her stroke as four, six nine

This meant that some things she could understand as a four year old and others as a nine year old.

This did not refer to her intelligents, as she was truly a brilliant person, with a huge vocabulary and a capacity of learning that was remarkable. We played many games online dealing with the powers of deduction and strategy and she would win so often, I believe the few times I would win, was because she allowed me to.

Crissie was on a ventalator for the entire time I had known her, so except for one special day when her breathing tubes were temporarily removed, I never heard her speak.

When recovering from her first and largest stroke, in addition to re-learning english, she was also taught the alphabet of the deaf, as was her mother so they could comunicate.

Crissie would use her fingers to speak to her Mom, she would write on notes to her other caregivers, and she would speak to all of us on the keyboard.

Towards the end, due to several more smaller strokes, she could no longer sign with her fingers, and no longer write notes. But, with a special keyboard suspended in front of her, and her arm suspended in a sling, she could type to us with her one finger.

She could, at this time, only use one finger, and had some movement in her wrist. This small remaining power of movement allowed her to "speak" to us.

As`each stroke paralised her a little more, Crissie would always thank HaShem for what she had left. She considered her last remaining finger a blessing from HaShem because it allowed her to continue to communicate.

Crissie in fact, considered everything a blessing from HaShem. Even her medical condition, which included the gradual detereoration of nearly every organ in her body was considered by Crissie, to be a true blessing.

"I am blessed" she would always say. And when she said it, she refered to everything in her life.

This was the hardest thing to understand about Crissie. It did not seem possible for anyone to feel that way. It was not a frame of mind that anyone, and certainly not me, could relate to.

This was a young woman, paralised in bed, breathing through a ventalator and being fed several times a day through tubes going directly into her stomach that felt so blessed.

Although impossible for me to understand, Crissie had no trouble explaining it.

"I go to classes everyday", refering to the classes that she found in the chat rooms on Paltalk, and later in the Virtual Yeshiva and specificaly in the Jewish Home. "I study Torah with rabbis, meet and listen to other people talking and share conversation and music with people. I am truely blessed"

In fact, she considered her medical condition a blessing. "HaShem would not do anything that was bad for me" she would say. This was her way of saying that whatever happened or will happen to her was the will of HaShem and was therefore a good thing.

The computor was her window into the world. It was everything to her in terms of living outside her tiny world. It was her only source of learning, of music and of people.

She was raised in a completely sheltered world under the strict supervision of her father. She had never gone to a movie or watched television.

Having lost much of her memory, I thought she had forgotten, but her mother confimed to me that it was true. There had never been a television in the home and movies was not an approved activity.

Music was allowed to her and oh how she loved it. She loved many types of music and shared with me many of her favorites. My computer is filled with music that she sent me online.

With her mothers permission, I sent her a movie. I sent her the movie as much for me as for her. It bothered me that she had never seen one.

She watched it on her computer screen. It was Fiddler on the Roof. She seemed to love it and we spent the next few weeks talking about it. She spoke of the charactors in it as though they were real people and she felt as though she was looking into the life of an actual family. She loved it.

But although it was her first movie, it was also her last. She felt that she had commited a sin watching it as her father she believed would not have approved. Her father had passed away two years earlier, and although her mother gave her permission, and told her that she was sure her father would have allowed it under these special circumstances, Crissie felt that she had sinned.

In one of the classes she had attended, given by one of the rabbis in one of the chat rooms, Crissie learned that we all, at one time or another commit a sin. And when Crissie learned something, she could never unlearn it. Crissie saw things in only two ways. White or black, up or down, yes or no, right or wrong, good or bad, sin or no sin. Either something was.....or it was not.

In her innocents, she could not sin. She was not capable of it. This however did not stop her from asking HaShem for forgiveness everyday for her sins.

Her "sins" consisted of things like not liking people who made fun of her, or feeling uncomfortable around people she considered rude.

Crissie always tried to do as many Mitzvas as possible, and the list of Mitzvas she was capable of doing, was too short for her, and she was always trying to do more.

She got the idea, I believe it was from Rabbi Dov, that just saying "hello" to someone was a Mitzvah.

Crissie did many Mitzva's but saying "hi" to you, was her favorite.

-------------------------------------------- oh hashem i reach out to you in my nite an pray you help all who is ask for you to touch an heal
i look to know for anser to my day i jus ask torah hand show me the way..
with you in my dreams an with you lite i walk an talk an laff with you..
some time i cry.. some time i feel i be so alon in this world of life

i had a tiny strok dr say and can no longer sign.. how much i look to dream my dreams an go from this prison to be free.. to see the beauty you share to me of words an lite of torah.. how you bless me hashem an how you words touch me

soon hashem i gona be 27 yr old an i keep pray an thank you for all you gift to me i hav no needs an no wants for all i have is be from you hashem
my torah.. my prayer.. an even my tears.. is show me how aliv i be an how bless i be
i sit so still an lisen to beat of my heart an think of how big my world is be

every day hashem you show me life.. an every second of every day you gift me hope... you show me in my dreams how is be.. even you be sad.. an cry an pray you kids return to torah

hashem do they see the doors you open.. do they see how you bend.. do you kids ever say thank you... do they love as much as you love us... do they feel you touch... do they hear you words of torah

hashem thank you for touch the very core of my being an help me one more day to be even better...one mor day to learn.. one mor day to love you..one more day to read an touch your torah...one more day to feel.. one more day to dream..one more day to whisper your name.. an one mor day to feel your touch...

i wakded up with thinks in my head an rite the feelings i have now..
i hear the wings of freedom.. an hashem afor i forget thank you for let me keep 2 finger to use to type to you..an say hi to people online.. i gota love how you keep a good eye on me... an how again you is bless me..is amasin

i gona sleep more.. an pray i dream dreams of you hashem
thank you for be my frind hashem an for loving me

this be crissie