Joy's commitment to demystifying the symptoms and challenges of multiple sclerosis has resulted in the writing of a book that offers hope and inspiration to others. As Joy persevered, she learned a multitude of lessons that enabled her to maximize her level of functioning and to find meaning in even the most difficult challenges. She invites readers to take a walk with her through her story in order to connect to their own tenacity and resilience. By presenting the information in a reader friendly style, anyone facing adversity will find helpful strategies and the courage to 'Never Give Up' in their own difficulties -Margaret Evans RN, BScN, CPCC Registered nurse, life coach, author
Never Never NEVER Give up
An Inspiring MS JourneyBy M. Joy (Willms) NeufeldBalboa Press
Copyright © 2012 M. Joy (Willms) Neufeld
All right reserved.ISBN: 978-1-4525-4936-1Contents
1. FRANZ AND HEIDI........................................................12. OUR CHERISHED MOTHER...................................................43. THEY CAN'T HELP ME?....................................................94. WHAT HAPPENED TO OUR ANGEL?............................................135. PAPA WAS VERY LONELY...................................................186. WHAT A JOLT............................................................247. A TYPICAL TEENAGER.....................................................278. LIKE JOSEPH? WORKING THROUGH PAIN AND HURT.............................329. GRADUATION AND THEN?...................................................3710. WEDDING BELLS.........................................................4211. THEIR TROUBLES BEGAN?.................................................4712. THE JOY OF CHILDREN...................................................5013. HEIDI HAD FUN.........................................................5514. KIDS DO GROW UP !.....................................................6015. AM I GOING BLIND?.....................................................6316. NEVER TRUST A SLEEPING DOG............................................6917. MENTAL AND EMOTIONAL FATIGUE..........................................7218. THANK YOU FRANZ!!!!...................................................7619. "HOW DID YOUR ILLNESS AFFECT THE CHILDREN?"...........................8320. WHAT DOESN'T DESTROY YOU WILL MAKE YOU STRONG!!!!.....................8621. A TREASURE HUNT.......................................................9022. TENACITY - RESILIENCE!................................................9323. HUMOUR................................................................9724. FAMILY SECRETS........................................................10125. THE MYSTERY OF DANCE..................................................10426. HEIDI'S SPIRITUAL JOURNEY.............................................11127. HEIDI'S TRAVEL FRUSTRATIONS...........................................11428. TAKE A WALK WITH ME...................................................11729. THE MISSING PUZZLE PIECE..............................................12130. NEWS FROM ITALY???????????............................................12531. THEY WERE IN THE AIR..................................................12832. LIBERATION............................................................13333. CAN IT BE?............................................................13734. LEARNING TO WALK?.....................................................14035. IT HAS BEEN ONE YEAR!.................................................14236. MY DESTINY............................................................145
Chapter One
FRANZ AND HEIDI
A beautiful sunny day dawned. It was Canada Day, July 1st. The birds chirped loudly waking Heidi from a deep slumber.
"Oh Franz, is it that time already?" asked Heidi as she yawned and rubbed her eyes.
"I'm afraid it is Heidi," responded Franz as he snapped the last button on his blue plaid shirt. "It's time to go for my walk," Franz smiled as he pecked Heidi's cheek. "See you at supper." Franz shut the bedroom door so Heidi could get some more sleep.
"Oh, my legs," Heidi complained as she sat up at the edge of the bed.
"Why do they feel so stiff and heavy?" she wondered. "I sure wish someone had a few answers for me. Oh well, I guess that's my lot in life." murmured Heidi as she pushed herself to her feet. "One day, maybe I'll get some answers." Heidi had her breakfast and swept the kitchen floor. "That's all I've done this morning and I'm already very tired. I have to sit down," Heidi thought to herself.
Heidi sat down on the beige brocade couch in the family room. She turned the television on and noticed black spots in her line of vision. As she looked at the T.V. Heidi noticed two of everything.
"What is going on?" she questioned. "Why am I seeing double? I guess this is another weird action my body is having. I'll have a good night's sleep and it will probably go away."
Heidi had learned over the years that her body wasn't normal like other people's seemed to be. She, however did not have pain, so was very grateful for that.
Walking was a problem and at times she fell! "Why do I trip over my own feet?" Heidi questioned. On a good day Heidi and Franz went for a walk. When Heidi got tired her right leg behaved weirdly. It would bend out of shape, almost twisting. Heidi would have to sit down on the curb while Franz walked home to get the car. Heidi could not walk any further.
At the end of the day Franz came home to dinner. "How was your day?" greeted Franz warmly.
"It has been interesting," replied Heidi. "This morning when I looked at the T.V., I noticed two black spots in my line of vision. As I continued to watch T.V. my eyes saw double of everything."
Franz hugged Heidi. He knew she struggled with her body.
"If it continues tomorrow, I'll go see an optometrist," sighed Heidi.
That evening, Franz and Heidi went to see some friends.
"While we were travelling on the road, I noticed the centre yellow lines were double. I saw two yellow lines crossing each other," said Heidi. "The blacktop too, looked like two roads crossing each other in front of me. But I have no pain or weird feelings in my head. It will disappear," thought Heidi.
The next morning, there were no changes in her eyesight. She would have to go see the optometrist. He would tell her what was wrong.
Heidi made an appointment for that afternoon. She drove to her appointment, parked the red convertible, and sat down in the office. Heidi was quickly ushered into the optometrist's office where he had a look at her eyes. He was startled!
"This is not something I can help you with. You must go to the hospital," he insisted.
Heidi was shocked! She left the office, stepped into her car and drove home.
Franz got home from work and Heidi spoke, "The optometrist insists I go to the hospital. I don't know what this is all about. I guess in time we'll find out."
Franz and Heidi soon entered the hospital. After some time the doctor spoke, "What is the problem?"
"I am seeing double and we were told to come here and see the doctor," spoke Heidi.
The doctor soon checked her eyes. Then he called two more doctors as he didn't have an answer. The other doctors were puzzled as well.
Finally, one spoke, "go see an opthamologist on Monday."
"Yes, we will," sighed Heidi.
The following Monday morning, Franz took Heidi to the eye specialist. He was a very kind, gentle doctor.
He took his instruments and peered into Heidi's eyes. "Do you have numbness in your face?" he questioned. "Have you lost taste in your tongue?"
"No problems there," Heidi replied.
He continued, "If you did, I would suggest you've either had a stroke or you have Multiple Sclerosis. Don't even think of any of those possibilities. You've probably got a virus. It will last for six weeks and then disappear."
The following day, Heidi sat on the couch and wondered, "Am I going to be blind? Why is my eyesight affected?"
"More questions," thought Heidi. " Will they ever end?"
Chapter Two
OUR CHERISHED MOTHER
The air was charged with excitement! "We are going on a picnic, we are going on a picnic!" The children chorused.
What a family! This family of two boys and six girls were a lively bunch. They were a fun- loving family who loved to picnic together. Heidi, the middle child, danced around in the large kitchen. She clapped her little hands excitedly.
It was a gorgeous, sunny day. Mom and the girls quickly prepared a delicious lunch. There was fried chicken, potato salad. There were carrot and celery sticks, hot buttered rolls, and a delicious chocolate cake. Everything was placed into the picnic basket. Now they were ready to roll!
Dad picked up the basket and set it into the car. "Get your shoes on Heidi. We're going to leave without you if you don't hurry up," called Dad.
"I'll hurry, " spoke Heidi as her blond pigtails bobbed. She quickly ran back into the house. Poor Heidi. She had been so excited to go on this picnic, she had run outside without her shoes.
"Okay, let's go," announced Dad loudly.
The children piled into the car chatting away. Down the gravel country road they drove with rocks and dust flying.
"Don't sit so close to me," complained Dorrie, "You're squishing me."
"I am not," retorted Elly.
"You are so."
"You kids get along back there, or we'll go home," demanded Dad.
They knew they'd better settle down or else.
They drove an hour into the country and found a beautiful park. There was a creek running through it. Tall evergreen trees provided shade for their picnic table. They found the perfect spot. After dad parked the car, he took the picnic basket out of the trunk while the kids scrambled out of the car. Heidi ran off and climbed up the slide. Whish, down she slid.
"Come on, Heidi, don't you want lunch first? Aren't you hungry?" called Mother.
Hurriedly, Heidi came running and sat down at the table. "That slide is so much fun," panted Heidi, all out of breath.
Dad taught this family to say grace before they ate the delicious food. "Thank you Jesus for this food, Amen!" chorused the children.
Then everyone dug in. They were so busy eating there was little chatting happening. Suddenly, one by one they noticed Mother. She'd fallen against Dad with her head down.
Dad laid his roll onto the table and spoke, "Children, your mother is not feeling well. " Dad sat there for a few minutes trying to help their mother. Finally, he announced quietly, "We must go home."
The family had so much love for their mother. One by one they came over and spoke, "I love you so-o-o-o much," as they hugged her.
They looked at their Dad. "We will have to go back home," Dad spoke softly. The sweet children knew something was horrifically wrong. This was a short picnic, but mother needed help.
While Dad gently picked up their loving mother, the kids watched with fear and terror! The mood was very somber. Henry, the older brother, ran to the car and opened the door so Dad could place their mother on the seat. Mother leaned against the seat with her head back and eyes closed.
"I can't move," Mother whispered.
The children slowly sat down to finish their meal. No one was very hungry now. "What is happening to our mother?" all the children thought to themselves.
When Dad finished settling their mother on the front seat of the car, he returned to the table. "I have to take your mother to the hospital, she is very sick. Let's finish eating. You girls can then clear the table. Put everything into the basket and we will drive back home."
Soon the family were on their way. It was a very quiet ride home. Their tears were on the surface. None of the children lamented over the seats in the back anymore. They all focused on their dear mother. These children knew they were each loved and cherished by their mother.
"Now what?" they thought as each one felt a lone tear trickle down their cheek.
Poor Papa. He looked extremely worried. He kept glancing at his dear wife. The children watched as he'd reach out to take her hand and gently squeeze it. They loved each other dearly.
Heidi's mind was frantic! Such a young innocent four year old was worried about the loss of one of the most important people in her life? "This isn't fair," thought Heidi. She could hardly stand to see her mother go through this pain! Heidi wanted it all to stop and be normal. "What is going to happen?" she cried.
* * *
Soon Papa was on his way to the hospital. He knew the children would get into bed. Little did he know what lay ahead.
He said, "God, what is going on here? My wife is very sick!"
When he got to the hospital, he gently carried his wife through the doors of the hospital and lay her on a bed.
The doctor came over and asked, "What is happening here?"
Dad took his hat off and spoke, "Our family was having a picnic when my wife collapsed. She cannot move her arms and legs."
The doctor questioned, "When did this happen?"
"A few hours ago," Dad responded quietly.
The doctor picked up his instruments and carefully and methodically tested and checked her body.
After a half hour, the kind doctor spoke, "We do not have any answers for you now. We will admit her and do a lot more testing in the following days. I am sorry I don't have more answers for you," spoke the doctor gently.
Dad kissed his wife and spoke, "I'll be back tomorrow. Maybe they'll have more answers by then."
Dad hated to leave his wife alone but he knew she was very ill and that was the best place for her. He slowly walked away from her bed and blew a kiss as he waved goodbye.
As he walked out of the hospital door, his mind was in a fog. "What could be happening to my wife?" he agonized.
Back home, "What could happen to Mama?" asked Heidi, as Dorrie, the eldest sister put her to bed. "I don't know," sighed Dorrie, "But I hope she gets better soon. We need her."
"Yes, we do," spoke Heidi. "My little finger hurts and Mommy is not here to kiss it."
Dorrie quickly kissed her little finger and said, "You go to sleep now. Goodnight." As the eldest of the girls, Dorrie felt responsible.
Little did anyone guess how long this separation from mother and family would be. One could not imagine what this poor mother was going through. As she lay in that hospital bed week after week, she so longed to be at home with her family.
"What is going on here?" Mother asked herself. "I know I've had arthritis and pains in the past, I never expected something like this. I am only thirty-six years old. I have children at home who need me. How is my husband faring without me? I want to go home. My hands and legs won't work. I can't go home. My family wouldn't know what to do with me." Then this poor mother cried.
As she lay there crying, she pleaded, "Dear God, please help me so I can go home and be with my children and husband. I know they need me so. I feel helpless. These seizures hurt something awful. God, please help me."
One day, the doctor came into her room and spoke quietly, "We have discovered your problem, Mrs. Deeker. You have a rare disease called Transverse Myelitus. I am sorry to tell you there is no known cure for this disease. It appears a virus attacked your spine which has debilitated you. We will do our best to give you good care. I am so sorry," the doctor continued as he patted her arm.
Chapter Three
THEY CAN'T HELP ME?
"They can't help me?" Mother sobbed. "What do I do now?"
Mother lay suffering with seizures. Her fingernails would pierce into her hands and draw blood during a seizure. She was in agony each time her body cramped up. Her poor body was a victim to the virus that attacked her spine.
Week after week, month after month Mother lay there. She was not a complainer. In fact, she thanked the nurses for delivering her breakfast, lunch and dinner . She had to wait, sometimes a long time before a nurse had time to feed her the meal. Mother could not feed herself as her arms were totally paralyzed and lay limp.
Hour after hour this sweet Mother thought about her children at home. How was her baby boy? "He must be growing quickly," she said to herself. "I love those baby blue eyes and blond hair. His chubby cheeks are so kissable. I do miss them."
Tears rolled down her cheeks as she thought about her family back home. "God, please take care of my babies. They need their mother, but I can't take care of them. Thank you, God, for sending angels to look after my children."
"Hi mother," spoke Dorrie one day as she entered the hospital room. "What a beautiful bouquet of flowers," smiled Mother.
"They are from the garden. I am so happy to see you," smiled Dorrie as she kissed her mother's cheek. "We miss you so-o-o much at home."
"How are you doing, my dear girl?"
Dorrie spoke, "Oh Mother, I miss you so much. I can't keep the garden clean. I can't keep the house as clean as you kept it. We're eating the cookies so fast, I feel like I'm always baking."
"Do you get some help?" asked Mother. "Yes, Grandma comes over to help", said Dorrie, "but there is so much to do.....!"
"Yes my dear, it must be very hard for you. I wish I could help you," said Mother.
"Oh Mother," said Dorrie as she began to cry. "I was so-o-o hoping you would get better so you could come home. But look at your legs and arms. You can't even move them!" Dorrie buried her head in her mother's night gown and wept!
Papa soon appeared at the door and walked over to Dorrie. He stroked her hair and spoke. "It's alright Dorrie. We must go now so we don't tire your mother too much."
Dorrie wiped her tears and lingered at the bedside while holding her mother's hand.
Papa felt badly too that their fourteen year old daughter had so much work to cope with at home. He tried to help as much as he could by kneading the bread once a week. It was too big a job for the fourteen year old.
As Dorrie left her mom's hospital bed, she kissed her and then waved as she walked out the door. Papa gently kissed his wife and they chatted for a few minutes. Papa spoke, "Mother's Day is coming. I can bring the children to the hospital for Mother's Day. We will bring a picnic basket with a nice lunch."
Mother spoke, "I don't think I am well enough to sit in a wheelchair out on the grass." There was a lawn on the hospital grounds and Papa so wanted the family to be together. Mama said she would try to go outside that day.
On Mother's Day all the family were together on the lawn at the hospital. The children were delighted to see their mother. She tried to put on a brave front for the family as Dad wheeled her out of the hospital to the freshly cut green grass. The children were excited to see their mother, but they could also see that she was not doing well.
She smiled as each child gave her a hug. She said, "My, how you are all growing."
The family heartily ate their lunch, chatting away. An hour passed by and Father could see that his sweet wife was getting very tired. She was obviously slumping in her chair with her head down.
"I must take Mother back to her bed in the hospital," Dad spoke. "You girls clean up please and put everything back into the basket. I'll be back soon and we'll go home."
Each one kissed Mother goodbye. "Come home soon, Mommy. I love you, " they all whispered as Daddy slowly pushed the wheelchair toward the hospital. The six children watched their mother till Dad took her around the corner of the hospital. Could this be the last time the family was together? Would this be the last time the children would see their mother? Every day their mother got weaker and weaker!
"The most automated appliance in the household is the Mother."
Chapter Four
WHAT HAPPENED TO OUR ANGEL?
-Rrr i n gg Rrr i n gg Rrr r i n gg
"The telephone is ringing," called Beth, the second eldest daughter. The telephone had just been installed on the farm and the family was not used to this new gizmo.
"Hello," the children heard Dad speaking. It was 7.00 a.m. Who called that early in the morning, the girls questioned.
"Is this Jacob, Angela's husband? " the doctor asked.
"Yes it is," spoke Dad.
"I am sorry to tell you Mr. Deeker, that your wife died at 6:00 a.m. this morning," the doctor stated.
"What?" poor Daddy sobbed, "She's dead? It can't be – no-o-o it can't be!"
Life stood still for the family.
No one ate any breakfast that morning.
Grandma came over and helped the family where she could. She'd lost her eldest daughter. "What will this family do now?" she sobbed.
The cows needed to be milked and the chickens had to be fed. Several hours went by after that dreaded phone call. The farm animals called out. The cows mooed and the chickens clucked. The animals did not know that life as it had been for the Deeker family had come to a stand still. They had been hoping against hope that Mother would return home and things would be normal again. It was not to be.
(Continues...)
Excerpted from Never Never NEVER Give upby M. Joy (Willms) Neufeld Copyright © 2012 by M. Joy (Willms) Neufeld. Excerpted by permission of Balboa Press. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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