Stacey Kramer is a brain tumor survivor that captured in the best way possible the bright side of brain tumor. As you look into the future don't be scared. Stacey shares how an unwanted experience -- frightening, traumatic, costly -- can turn out to be a priceless gift.
http://www.ted.com/talks/lang/en/stacey_kramer_the_best_gift_i_ever_survived.html
I was once just as scared as you probably are now, but I now consider myself a receiver of an amazing gift.
Wish you all the best and a full blown recovery, God bless you!
Newly Diagnosed
Before you read more about glioma watch this quick video where I summarize my experience and show you that there is a lot of life with glioma, I hope you find comfort in it. The secret to a long life is to believe in it, we can live with glioma.
My Experience
Sunday, July 1, 2012
Tuesday, January 17, 2012
The Life Thread
Once there was a widow who had a son called Peter. He was a strong, able boy, but did not enjoy going to school and was forever daydreaming.
"Peter, what are you dreaming about this time?" his teacher would ask him.
"I'm thinking about what I'll be when I grow up," Peter replied.
"Be patient. There's plenty of time for that. Being a grown up is not all fun, you know," his teacher said.
But Peter found it hard to enjoy whatever he was doing at the moment, and was always hankering after the next thing. In the Winter he longed for the Summer, and in the Summer he looked forward to skating, sledding and to warm bond fires of winter. At school he would long for the day to be over so he could go home, and on Sunday nights he would sigh, "If the holidays would only come..." What he enjoyed most was playing with his friend Liese. She was as good a companion as any boy, and no matter how impatient Peter was, she never took offense. "When I grow up, I shall marry Liese," Peter said to himself.
Often he wandered through the forest, dreaming of the future. Sometimes he lay down on the soft forest floor in the warm Sun, his hands behind his head, staring at the sky through the distant treetops. One hot afternoon, as he began to grow sleepy, he heard someone calling his name. He opened his eyes and sat up. Standing before him was an old woman. In her hand she held a silver ball, from which dangled a silken golden thread.
"See what I have got here, Peter," she said, offering the ball to him.
"What is it?" he asked curiously, touching the fine golden thread.
"This is your life thread," the old woman replied. "Do not touch it and time will pass normally. But if you wish time to pass more quickly, you have only to pull the thread a little way and an hour will pass like a second. But I warn you, once the thread has been pulled out, it cannot be pushed back in again. It will disappear like a puff of smoke. The ball is for you. But if you accept my gift you must tell no one, or on that very day you shall die. Now, say, do you want it?"
Peter seized the gift from her joyfully. It was just what he wanted. He examined the silver ball. It was light and solid, made of a single piece. The only flaw in it was the tiny hole from which the bright thread hung. He put the ball in his pocket and ran home. There, making sure that his mother was out, he examined it again. The thread seemed to be creeping very slowly out of the ball, so slowly that it was scarcely noticeable to the naked eye. He longed to give it a quick tug, but dared not do so. Not yet.
The following day at school, Peter sat daydreaming about what he would do with his magic thread. The teacher scolded him for not concentrating on his work. If only, he thought, it was time to go home. Then he felt the silver ball in his pocket. If he pulled out a tiny bit of thread, the day would be over. Very carefully he took hold of it and tugged. Suddenly the teacher was telling everyone to pack up their books and to leave the classroom in an orderly fashion. Peter was overjoyed. He ran all the way home. How easy life would be now! All his troubles were over. From that day forth he began to pull the thread, just a little, every day.
One day, however, it occurred to him that it was stupid to pull the thread just a little each day. If he gave it a harder tug, school would be over altogether. Then he could start learning a trade and marry Liese. So that night he gave the thread a hard tug, and in the morning he awoke to find himself apprenticed to a carpenter in town. He loved his new life, clambering about on roofs and scaffolding, lifting and hammering great beams into place that still smelled of the forest. But sometimes, when payday seemed too far off, he gave the thread a little tug and suddenly the week was drawing to a close and it was Friday night and he had money in his pocket.
Liese had also come to town and was living with her aunt, who taught her housekeeping. Peter began to grow impatient for the day when they would be married. It was hard to live so near and yet so far from her. He asked her when they could be married.
"In another year," she said. "Then I will have learned how to be a capable wife."
Peter fingered the silver ball in his pocket.
"Well, the time will pass quickly enough," he said, knowingly.
That night Peter could not sleep. He tossed and turned restlessly. He took the magic ball from under his pillow. For a moment he hesitated; then his impatience got the better of him, and he tugged at the golden thread. In the morning he awoke to find that the year was over and that Liese had at last agreed to marry him. Now Peter felt truly happy.
But before their wedding could take place, Peter received an official-looking letter. He opened it in trepidation and read that he was expected to report at the army barracks the following week for two years' military service. He showed the letter to Liese in despair.
"Well," she said, "there is nothing for it, we shall just have to wait. But the time will pass quickly, you'll see. There are so many things to do in preparation for our life together."
Peter smiled bravely, knowing that two years would seem a lifetime to him.
Once Peter had settled into life at the barracks, however, he began to feel that it wasn't so bad after all. He quite enjoyed being with all the other young men, and their duties were not very arduous at first. He remembered the old woman's warning to use the thread wisely and for a while refrained from pulling it. But in time he grew restless again. Army life bored him with its routine duties and harsh discipline. He began pulling the thread to make the week go faster so that it would be Sunday again, or to speed up the time until he was due for leave. And so the two years passed almost as if they had been a dream.
Back home, Peter determined not to pull the thread again until it was absolutely necessary. After all, this was the best time of his life, as everyone told him. He did not want it to be over too quickly. He did, however, give the thread one or two very small tugs, just to speed along the day of his marriage. He longed to tell Liese his secret, but he knew that if he did he would die.
On the day of his wedding, everyone, including Peter, was happy. He could hardly wait to show Liese the house he had built for her. At the wedding feast he glanced over at his mother. He noticed for the first time how gray her hair had grown recently. She seemed to be aging so quickly. Peter felt a pang of guilt that he had pulled the thread so often. Henceforward he would be much more sparing with it and only use it when it was strictly necessary.
A few months later Liese announced that she was going to have a child. Peter was overjoyed and could hardly wait. When the child was born, he felt that he could never want for anything again. But whenever the child was ill or cried through the sleepless night, he gave the thread a little tug, just so that the baby might be well and happy again.
Times were hard. Business was bad and a government had come to power that squeezed the people dry with taxes and would tolerate no opposition. Anyone who became known as a troublemaker was thrown into prison without trial and rumor was enough to condemn a man. Peter had always been known as one who spoke his mind, and very soon he was arrested and cast into jail. Luckily he had his magic ball with him and he tugged very hard at the thread. The prison walls dissolved before him and his enemies were scattered in the huge explosion that burst forth like thunder. It was the war that had been threatening, but it was over as quickly as a summer storm, leaving behind it an exhausted peace. Peter found himself back home with his family. But now he was a middle-aged man.
For a time things went well and Peter lived in relative contentment. One day he looked at his magic ball and saw to his surprise that the thread had turned from gold to silver. He looked in the mirror. His hair was starting to turn gray and his face was lined where before there had not been a wrinkle to be seen. He suddenly felt afraid and determined to use the thread even more carefully than before. Liese bore him more children and he seemed happy as the head of his growing household. His stately manner often made people think of him as some sort of benevolent ruler. He had an air of authority as if he held the fate of others in his hands. He kept his magic ball in a well-hidden place, safe from the curious eyes of his children, knowing that if anyone were to discover it, it would be fatal.
As the number of his children grew, so his house became more overcrowded. He would have to extend it, but for that he needed money. He had other worries too. His mother was looking older and more tired every day. It was of no use to pull the magic thread because that would only hasten her approaching death. All too soon she died, and as Peter stood at her graveside, he wondered how it was that life passed so quickly, even without pulling the magic thread.
One night as he lay in bed, kept awake by his worries, he thought how much easier life would be if all his children were grown up and launched upon their careers in life. He gave the thread a mighty tug, and the following day he awoke to find that his children had all left home for jobs in different parts of the country, and that he and his wife were alone. His hair was almost white now and often his back and limbs ached as he climbed the ladder or lifted a heavy beam into place. Liese too was getting old and she was often ill. He couldn't bear to see her suffer, so that more and more he resorted to pulling at the magic thread. But as soon as one trouble was solved, another seemed to grow in its place. Perhaps life would be easier if he retired, Peter thought. Then he would no longer have to clamber about on drafty, half-completed buildings and he could look after Liese when she was ill. The trouble was that he didn't have enough money to live on. He picked up his magic ball and looked at it. To his dismay he saw that the thread was no longer silver but gray and lusterless. He decided to go for a walk in the forest to think things over.
It was a long time since he had been in that part of the forest. The small saplings had all grown into tall fir trees, and it was hard to find the path he had once known. Eventually he came to a bench in a clearing. He sat down to rest and fell into a light doze. He was woken by someone calling his name, "Peter! Peter!"
He looked up and saw the old woman he had met so many years ago when she had given him the magic silver ball with its golden thread. She looked just as she had on that day, not a day older. She smiled at him.
"So, Peter, have you had a good life?" she asked.
"I'm not sure," Peter said. "Your magic ball is a wonderful thing. I have never had to suffer or wait for anything in my life. And yet it has all passed so quickly. I feel that I have had no time to take in what has happened to me, neither the good things nor the bad. Now there is so little time left. I dare not pull the thread again for it will only bring me to my death. I do not think your gift has brought me luck."
"How ungrateful you are!" the old woman said. "In what way would you have wished things to be different?"
"Perhaps if you had given me a different ball, one where I could have pushed the thread back in as well as pulling it out. Then I could have relived the things that went badly."
The old woman laughed. "You ask a great deal! Do you think that God allows us to live our lives twice over? But I can grant you one final wish, you foolish, demanding man."
"What is that?" Peter asked.
"Choose," the old woman said. Peter thought hard.
At length he said, "I should like to live my life again as if for the first time, but without your magic ball. Then I will experience the bad things as well as the good without cutting them short, and at least my life will not pass as swiftly and meaninglessly as a daydream."
"So be it," said the old woman. "Give me back my ball."
She stretched out her hand and Peter placed the silver ball in it. Then he sat back and closed his eyes with exhaustion.
When he awoke he was in his own bed. His youthful mother was bending over him, shaking him gently.
"Wake up, Peter. You will be late for school. You were sleeping like the dead!"
He looked up at her in surprise and relief.
"I've had a terrible dream, Mother. I dreamed that I was old and sick and that my life had passed like the blinking of an eye with nothing to show for it. Not even any memories."
His mother laughed and shook her head.
"That will never happen," she said. "Memories are the one thing we all have, even when we are old. Now hurry and get dressed. Liese is waiting for you and you will be late for school."
As Peter walked to school with Liese, he noticed what a bright summer morning it was, the kind of morning when it felt good to be alive. Soon he would see his friends and classmates, and even the prospect of lessons didn't seem so bad. In fact he could hardly wait.
Anonymous
Newly Diagnosed? Calm down and focus on life!
Instead of providing a laundry list of steps to teach you what to do without knowing how you feel or what is your condition I was more compelled to share what has worked for me:
- Shifted my focus towards the Present: I thanked God for being alive! This gave me energy to move beyond my tumor. I felt mortal for the first time in 37 years, and this made me scared of the future, of what would happen to me, my family. Then I realized that there is no way of knowing how much time I had on Earth, with or without a tumor, so I decided to live while I can, and shift my focus towards the present. I was back to work, active family duties and surrounded myself with people who gave me energy.
- I searched for information about my condition: the brain is the last frontier of Human Knowledge, an amazing and fascinating work of art developed over millions of years, over which very few people are gifted enough to deal with. I searched for the best scientific papers, doctors and survival stories to understand the safest alternatives to treat the tumor and preserve my neurological function
- I always stayed positive: in any situtation we can choose to be miserable or optimistic. A tumor is not a trivial challenge but everyone faces demons in life. This was mine. I continued to define who I was, and did not let a medical condition define who I was. This enabled me to face my tumor in a cold-blooded way and allowed me to manage all aspects of my life as well or better than before.
- I took action: After meeting several doctors, I chose one. I discussed alternatives with him and we worked together to begin my treatment, in my case, surgery and chemotherapy. The decisions were not easy as I had a relatively high risk of losing movement with the surgery, but I waited until he found a safe surgery option. In my case, I performed my brain surgery awake. Now I am on chemo.
To illustrate how tenues life is and how important it is to focus on the present I recommend that you read the next post, preferably before you read my last action. It is a French story called "The Life Thread". In a way it illustrates how important your tumor might be in your life if you look at it as a learning opportunity. Don't walk away from your challenges, face them and you will be better afterwards. This leads me to my last action:
- I never wondered how much longer I will live: Let me tell you a secret - your Doctor doesn't know either. Life expectancy statistics, overall survival rates, progression free time are all important numbers for researchers, pharmaceutical companies, doctors who are looking at cures and improving treatment outcomes. But you are unique. No matter what happened to test groups, the only case that matters to you is your case, so remember the life thread and focus on the present.
May God bless you and I hope you find your way to a long and happy life!
- Shifted my focus towards the Present: I thanked God for being alive! This gave me energy to move beyond my tumor. I felt mortal for the first time in 37 years, and this made me scared of the future, of what would happen to me, my family. Then I realized that there is no way of knowing how much time I had on Earth, with or without a tumor, so I decided to live while I can, and shift my focus towards the present. I was back to work, active family duties and surrounded myself with people who gave me energy.
- I searched for information about my condition: the brain is the last frontier of Human Knowledge, an amazing and fascinating work of art developed over millions of years, over which very few people are gifted enough to deal with. I searched for the best scientific papers, doctors and survival stories to understand the safest alternatives to treat the tumor and preserve my neurological function
- I always stayed positive: in any situtation we can choose to be miserable or optimistic. A tumor is not a trivial challenge but everyone faces demons in life. This was mine. I continued to define who I was, and did not let a medical condition define who I was. This enabled me to face my tumor in a cold-blooded way and allowed me to manage all aspects of my life as well or better than before.
- I took action: After meeting several doctors, I chose one. I discussed alternatives with him and we worked together to begin my treatment, in my case, surgery and chemotherapy. The decisions were not easy as I had a relatively high risk of losing movement with the surgery, but I waited until he found a safe surgery option. In my case, I performed my brain surgery awake. Now I am on chemo.
To illustrate how tenues life is and how important it is to focus on the present I recommend that you read the next post, preferably before you read my last action. It is a French story called "The Life Thread". In a way it illustrates how important your tumor might be in your life if you look at it as a learning opportunity. Don't walk away from your challenges, face them and you will be better afterwards. This leads me to my last action:
- I never wondered how much longer I will live: Let me tell you a secret - your Doctor doesn't know either. Life expectancy statistics, overall survival rates, progression free time are all important numbers for researchers, pharmaceutical companies, doctors who are looking at cures and improving treatment outcomes. But you are unique. No matter what happened to test groups, the only case that matters to you is your case, so remember the life thread and focus on the present.
Yesterday is the Past
Tomorrow is the Future
Today is a Gift - That's Why it is Called the Present
May God bless you and I hope you find your way to a long and happy life!
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