Praise for Count It All Joy

 

 

Sheila Ethier’s story was quite likely the saddest I’d ever come across. But because she has survived - and then thrived - it is also the most inspirational. If you’ve ever felt lonely, despondent or desperate, read this book. It is a story of hope in the face of suffering.                                                                        

- Scott Mckeen, Edmonton Journal

 

 

Oprah Winfrey talks about sharing our spirit. And Sheila has done just that, with all of us. Hers is a wonderful spirit, a spirit that refuses to give up. Great job, girl!  You’ve done it, and we’re amazed.

 

 - Peggy Garritty, PG Communications, St. Albert

 

 

I’ve known Sheila for many years now, and I’ve always admired her boundless strength and courage. She’s risen above circumstances that were often difficult in the extreme, never losing her dignity or sense of humor. I’m proud to be her friend. This moving book will bring warmth and hope into your life; it’s sure to inspire and touch you.

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- Lois Hole, Lt. Governor of Alberta, Author of Gardening Books

 

 

While we all know there are people out there who have depression, sometimes it is difficult to understand this illness. Sheila has done an excellent job of showing us, in a clear, honest and humane way, what the impact of depression can be on someone’s life.

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- Dr. Peter Silverstone, Dept. of Psychiatry, University of Alberta

 

 

“Your child has cancer.” Four words that no parent wants to hear. Sheila Ethier describes a mother’s incredible story of coping. Count It All Joy is a book that I hope will give a better understanding to all, both of depression and of a parent’s attempt to deal with caring for a child who has cancer.

- Dr. Sunil Desai, Cross Cancer Institute

 

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To my family and friends. 

With you in my life, I could heal and move forward.

 

Introduction

 

In the quiet shadows of the morning I take journeys in my mind to the happier times of my life. The days of packing up the car with little treasures from home – toys, pillows, blankets, peanut butter sandwiches…and my sons, Brandon and Jason. The three of us created adventures and fun as we traveled to city parks, nearby lakes and sometimes the mountains of Alberta. In the compact “Limited Edition” car that I bought for my family, I felt the Joy of being a single mother.

 

I felt the bond that ties mother and son would never be severed by poverty, illness or death. My white car offered freedom to seek the pleasures of life that I wanted my sons to experience.

 

Pictures of our journeys are tucked away in my mind, but they begin to fade as I remember my illness: the reality of shattered nerves, weary mind and restless spirit. Today, the journeys of happiness are shorter, and the challenges of living appear larger than ever before. For the past four years, I have been recovering from a chemical imbalance in my brain caused by chronic stress, called major depression. The illness has taken control of my moods, my energy and my sense of well-being.

 

When I was first diagnosed, I denied that I, a registered nurse with a good attitude and a positive outlook on life, could be depressed. It took several months before I could see that the symptoms my body and mind were experiencing were those of depression. I accepted the illness then, and worked with my psychiatrist toward recovery. That was in the summer of 1994.

 

My recovery has been very slow, due in large part to the fact that I am a single mother of two sons, one of whom is chronically ill. During the past four years I have experienced some of the darkest hours I ever hope to encounter. The profound sadness, the loss of interest in living and the anxious, restless energy have been very frightening. During my recovery, the tragic events in my life continued, so the healing was very difficult. 

 

In the spring of 1997, I decided it was time to write about my illness and my life’s experiences. I chose to write my story in the form of a journal. When I began, I knew that my story had to be told but I had no idea where to begin or how to get all my thoughts on paper. Initially, I hoped someone would write my story for me. I was incredibly ill and not overly excited about learning how to write a book.

 

But one morning I selected a notebook and pen, went to the Grabbajabba in St. Albert and wrote my first entry. This was the beginning of a routine that allowed me many opportunities: to express myself on paper, to get out of the house, to meet new people and to chat about the simple pleasures of life. I still continue with my routine. I work toward being a better person, raising my two sons and sharing my story.

 

Many of the entries in this journal come from the deepest corners of my heart and soul. Some were very painful to write. There are breaks between the dates of the entries, and some entries are very short. Some days, I had no energy or desire to write and could only sleep or do small errands or tasks that required little thinking.

 

Writing this journal has kept me focused and given me a sense of purpose.  Writing about my illness has literally helped me to heal, to feel better about myself and to learn how to accept the challenges I continue to face.

 

I carry the sadness that is in this book. Cry if you must, but please don’t carry the pain. Take what you have learned and be inspired to love more, care more and give more.

 

If you or someone you know has depression and need help, please contact your local Canadian Mental Health Association. A family physician can also provide assistance in obtaining proper medical assistance.

 

A secondary theme of this book is children with cancer.  Dr. Giulio J. D’Angio of the University of Pennsylvania, School of Medicine (see pages 145-146) notes that, with increasing survival rates for children with leukemia, it is now time to look at ensuring that these children do not become “chronically debilitated and handicapped adults.”

 

Successful management has assumed new dimensions,” says Dr. D’Angio. “The focus has been properly placed not only on the impact the disease and treatment might have on the child, but on the entire family unit.”

 

My youngest son was diagnosed with childhood leukemia when he was two years old. That was in the fall of 1987. Since that time I have passionately devoted my time to improving the quality of life for these children and their families. Many children have died because of this illness. I therefore dedicate this book to the children who suffer no more and to the families who grieve the loss of their children.

 

If you would like to help children with cancer, contact the following agency:

 

Kids with Cancer Society, Edmonton, Alberta, 780-496-2459

 

Thanksgiving Prayer

 

On October 10, 1987, after I had cried for 24 hours because I was informed that my son had a very aggressive and advanced form of T-cell leukemia, the pastor from my church gave me words of encouragement from the Bible. Little did I know that these words would become the foundation for my survival for the years to come:

 

Count it all Joy when you fall into the various trials, knowing that the testing of your faith produces patience. But let patience have its’ perfect work, that you may be perfect and complete, lacking nothing” (James 1:2, NKJV).

 

As I read the words, I refused to accept them. I cried out loud and said, “There is no Joy in cancer, God. I have enough strength and courage. Hasn’t my faith been tested enough? Please, not now Lord, when I am finally happy. I am the mother of two babies. I am in nursing school. You whispered to my soul, Lord, and said, “You will be a nurse”. I am doing a good job. How could you let this happen to my son? He has leukemia and I don’t want him to die. Please, not this in my life now.”

 

One week later, on a Sunday evening as I rocked my baby whose blood was producing abnormal white blood cells on the ward that made little kids bald, I surrendered Jason’s life to God. I said, “Thy will be done. He is in your hands. I will accept whatever lies ahead. He is your son. If you want him, Lord, you can have him. But I hope you let me mother him for a while.”

 

Thank you, God for the gift. I am still rocking my baby!

 

For ten years my son’s fight for life has inspired me to love more. I have been able to look past the pain and to find Joy.

 

 

 

Monday, April 14th, 1997

 

Today I awake with pain in my heart. I want to scream! Instead I hug my puppy, T.J. I then spend 30 minutes on personal hygiene. I try to look good on the outside, hoping I will feel better on the inside.

 

As hard as I try to feed, clothe and entertain my children…despite the many kind people who have shared their prayers and gifts with us, there remains a pain within me that I cannot escape. I will look for beauty, romance and JOY today.

 

I have the pleasure of driving Ashley and Michael to school. Ashley is 12 years old and is fighting her second battle with leukemia. She was two years old when she was first diagnosed. Last summer, after camp, she wasn’t feeling well, and the doctors found that the abnormal white blood cells had invaded her bone marrow once again. Ashley is very quiet and brave as she faces the challenges put before her. The least I can do is to drive her and her brother Michael to school when her parents need help. The two of them have been a wonderful gift to me with their teasing and joking natures.

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Friday, April 18th, 1997

 

After months of crying every day and wondering what was wrong with me, I asked my psychiatrist to explain my illness. He had to repeat the theory for me several times. I have a chemical imbalance in my brain caused by chronic stress, called major depression. His explanation helped me to accept the illness. I need to write his statement down every once in awhile, to help keep me focused.

 

My psychiatrist, Dr. Silverstone, prescribed a new antidepressant called Effexor. It took about a year to find the right medication for me. I fought the idea that a pill would help me feel better. But with Dr. Silverstone’s explanation of a chemical imbalance and with my nursing background, I hung on to the theory that the imbalance might be corrected by medication.

 

I take my medication faithfully, hoping it will take away the pain in my heart, my face, my shoulders, my neck and my spine. I occupy my time with my puppy, teddy bears, flowers, walks and naps. Every waking moment, I look for “feel-good” opportunities. There seems to be no rhyme or reason to my mood swings of calm or madness, of Joy or pain.

 

I accept the peace when it comes. I fight the pain and madness in my mind, body and soul by writing. I write letters to people who have never heard of me. I share my pain and ask for donations of items that will bring Joy to my sons and me. There is healing in sharing my story with strangers, in that I don’t burden my family and friends. I receive kind words from people who admire my strength and courage.

 

My psychiatrist wants me to participate in group therapy, I say, “Who has the time?” I am a single mom looking for a quiet, normal life with my two sons and puppy. Who will care for them? Who will drive Jason to medical appointments? Who will clothe them and entertain them? Who will keep them safe and happy? Who will drive me to therapy?

 

Sunday, April 20th, 1997

 

Today I cry many tears and I am angry. I am angry at all the people who know my circumstance, know my pain, know that I am not working and do not offer to help. They express sympathy and use words like, “Bad things always happen in your life. It just never ends with you does it? I wish I could do something to help.”

 

I guess that is my opportunity to ask for help. But pride gets in the way. It is far easier to ask a stranger. I believe the person who donates is truly touched by my experiences and gives out of compassion. I also believe people are more comfortable giving privately and quietly without facing the individual who requests support.

 

Again, I am tired of fears, worries and challenges. Why me? Why do I have depression? Why is my son always sick? I cannot work when my mood swings are so erratic. When will healing come? I am tired of holding out my hand and asking, “Can I have some more, please?”

 

Oh, how vulnerable are the sick and the poor.                                                 

 

Wednesday, April 30th, 1997

 

The pain and sadness within me does not escape nor surrender itself. Living with a child who has such intense medical, psychosocial and educational needs has literally destroyed me.

 

I look for Joy and happiness in each day. In rare moments, I find a spirit of peace and contentment. Then the peace quickly vanishes as reminders of survival as a single mother and fears about my son’s survival overwhelm my soul. Why, after all the trials he has had, do we now have news of heart damage? I cry and cry until the pain is so intense I can endure no more. I take my medication and wait for sleep to come. I sleep for peace but sometimes dreams rob me of that, too.

 

Today I am very discouraged, angry and tired. I will take T.J. for a walk and look for a friend. When I step out of the door, people expect me to smile and not grumble. I hope I can do that today.

 

I keep myself well groomed. People comment on how healthy I look. In nursing school I was taught the importance of bathing and grooming the patient. When we are ill and confined to bed, hopefully we feel a bit better if we are washed and have a change of clothes and clean bed linen. Good hygiene was very properly addressed in terms of improving one’s self-esteem and promoting healing.

 

Early in my depression, I hung on to this theory and soon realized the pleasure I received in pampering myself with floral scented lotions, soaps and perfume. With very little desire to participate in activities that once brought me Joy, I became newly focused on the texture and scent of my skin, hair and nails. I couldn’t have a conversation with a friend without crumbling, but I could give myself a manicure or pedicure without crying. I loved shiny pink nail polish, soft, rose-fragrant lotions and sweet, fruit-scented soaps. My senses were delighted with these simple yet luxurious “It’s time for me” routines.

 

I work very hard to look good so I’ll feel better. The routine of self care offers me control, comfort and a sense of normalcy. To look at me, one would never suspect that I am lonely, sad and afraid. Even the words, “I have had a total collapse of mind, heart and spirit,” do not allow the person next to me to understand the pain.

 

Monday, May 5th, 1997

 

Where is the Joy that I speak of?

 

In the early morning, my mind turns over the questions, the ideas the opportunities and the responsibilities I must answer and act on each day. Alone, while I am in the middle of a nervous breakdown, I tackle each thought and task as best I can. Jason needs to see the plastic surgeon and the pediatrician some time soon. The neuropsychologist wants to discuss the results of Jason's testing. The boys need to see the dentist, who is always the last on the list of doctors to see. I think it has been two years since the boys have had their teeth cleaned. Brandon needs shorts. Jason needs a glove for baseball. I need a new pair of glasses, the pair I wear are four years old. Does Jason need therapy to deal with the brain injury and post- traumatic stress? Do I need therapy? Where's the money? Where's the Joy?

 

The Joy is in remembering the fun and laughter I have brought to my sons' lives. The memories of all the special children I have cared for and loved as a pediatric registered nurse.

 

The excitement builds as the Blanket of Love project is officially promoted and endorsed by the Canadian Mental Health Association, Edmonton Division. I started the Blanket of Love project out of a desire to provide comfort and support to other people with a mental illness. I got the idea of giving a Blanket of Love to these people from using a quilt that my grandmother made for me.

 

One afternoon I was very cold and, looking for a blanket, I came across a quilt I had stored away. I looked at the worn, bright yellow and orange patchwork quilt and my mind went back to the day my grandmother gave it to me. I immediately felt a peace wash over me, as I thought of her and the fun we used to have together. I covered myself with my quilt made of love and let the warmth soothe my cold, achy body.

 

As I lay there remembering all the love my grandmother gave me, it came to me that other people with depression should have their own Blanket of Love. In the middle of my darkness I found a reason to hold on to life. I smiled as I closed my eyes for sleep, "Tomorrow I will start a new project." I still use that quilt to remind myself that I am loved, even when my mood does not allow me to feel so.

 

The Joy is in today and the beauty that surrounds me. The new buds on the trees, the spring plants waking up from their winter slumber, my puppy's friskiness as he hunts for the scent of who knows what. I am delighted with these simple pleasures and put the worries of the unforeseen on a shelf. Today I will take one moment at a time. Accept the challenges as they come. I will take care of myself and trust that God will give me strength to get through the day.

 

Tuesday, May 6th, 1997

 

Yesterday I slept from noon until 6:00 p.m. Sometimes when the pain is too much, sleep is the healer. At 8:00 p.m., I bought a milkshake and went to Jason's baseball game. I couldn't bring myself to sit with my mom and the other parents. I stayed in the car and from the safety of the familiar burgundy interior, watched some of the game. I also wrote a letter.

 

Jason slept in his own room, in his own bed. Jason is afraid to sleep alone. He says he sees shadows in the dark, and he is afraid of dying in his sleep. To ease his fear, we discussed the fun of having a bedroom full of Mickey Mouse and friends. On Sunday we put up decals of Disney characters. It was great fun.

 

On Monday I made his bed with the new Mickey sheets and comforter set. The room looks exactly as we had hoped. A fun, happy room that makes you smile as you close your eyes and fall asleep. The night light adds a special glow to the room.

 

This morning I shaved my head. Why I am not sure, but afterwards I felt very pleased. Both with the new look I created and with the freedom I felt in being allowed to shave my head. Through the shaving, the trimming and the cleaning, it suddenly occurred to me that fear is what causes my physical pain. For a few brief minutes I felt freedom, happiness and Joy.

 

In the small bathroom of white and soft pastels, there was my body in the skin nature gave me, hair falling to the floor. I had control of the razor. "Shaving and Freedom!" I said to myself. 

 

This is for you Jason, Ashley, Gloria and all of my friends who are bald. Shaving and Freedom! I thought, "This is what cancer and the treatment does to you. You become bald, cells in your body change or are destroyed, you have no control and fear robs you of happiness."

 

The sound of my sons' voices interrupts my awareness of freedom. Fear and the physical pain appear again. I immediately feel the draining of energy from head to toe. Their voices have reminded me of the responsibilities of living today. Will the phone ring with news I don't want?

 

Loneliness, sadness and fear. Most people with depression or anxiety disorders and some people with a healthy mind experience feelings of unwanted or unreal fears. For me, as a woman, as a mother, as a nurse, the fear has been a part of my life and has eroded the best of me.

 

Again, I say, I should be in a place where someone can care for me. Where is that place? Who would care for my children?

 

Thursday, May 8th 1997

 

Keep busy, don't stop. Walk, run simple errands, water the plants: any simple activity is the goal. Don't call the doctors yet. Just the thought of being a mother drains my energy level, peace of mind and spirit of hope. Concentrate on good things, appreciate nature and praise yourself for your accomplishments. Don't worry about money. It is only a means to an end. Money will not save Jason's life. Work with what you have and look for Joy!