In 1988 I founded a family camp for children with cancer and their families. I was a single mom of two sons and my youngest had T-Cell Leukemia. I created the camp for my sons and for other families for the purpose of bringing laughter, sunshine and hope into our lives. This is an excerpt from my journal about camp and my good friend Lindsey. I love you Lindsey, miss you and will never forget you.

Saturday, September 5, 1999

They come together every September long weekend to meet with old friends and make new friends. On Friday afternoon, they pack up all their worries, sorrows and fears and tuck them into the quiet corners of their soul. Thirty families pack up the car with treasures from home and drive to Camp Health Hope Happiness on Lake Isle, Alberta.

The first few miles of the journey are filled with excitement as kids wonder if their friends from last year are coming to camp and parents mentally do a checklist, is there film for the camera, did I pack the sunscreen, did the kids bring a toothbrush. Twenty minutes into the journey someone says, Oh dear, I forgot my jeans. Mom says forget it, we’re not turning back. Dad is wondering how he’ll get through the next few days. He really doesn’t want to go to camp because he’s worried about paying the bills and he’s also thinking I don’t think I want to spend the weekend with sick kids. Childhood cancer is not something he wants to deal with or think about.

Finally, we’re at camp. As families arrive they look for the camp committee to receive their information package, room assignment and a bag full of goodies for the kids. Introductions are made. The first night is an informal get-to-know you time. By 9:00 p.m. most of the families have arrived and are meeting at the center court to chat with old friends and encourage new ones to take part in the weekend’s activities. Laughs, smiles and good conversation are always plentiful around the first campfire.

Families soon realize that it is here at camp that they have found comrades who share the same agonizing pain and few explanations are needed. New families see hope for the future, long-term survivors see friends who know what the battle is like. They all find comfort and support in knowing that they don’t have to face the pain alone.

The four days go by very quickly and all kids say, “mom, dad, why can’t we live here all year?” Siblings, who feel lost and alone while their brother or sister suffers through the treatments, now feel like a part of the family again. They all see that here at camp there is acceptance, friendship and love.

I have been involved with the family camp for 12 years now and I would like to believe that heaven is just like camp. No worries, no fears, only sunshine, fun and lots of love.

This year is a difficult year for me to smile and play because I still haven’t been able to deal with the devastating news that two of my special friends are on treatment again for the third and fourth time.

I spotted Lindsey right away. Her family had just arrived for registration.  I looked at her and I had nothing to say. There were no words of comfort, support or wisdom. I did not know how to tell her how sorry I was to learn that the cancer had returned.

We just looked at each other. She must have sensed my nervousness about the whole thing because she flashed a silly grin at me. I reached out to her and gave her a hug. It was O.K. now. I knew I wouldn’t have to say anything profound or intelligent. I knew at that instant that she would help me. I could see years of hard times in her 15-year-old twinkling eyes.

She was the hero, the brave one and quite possibly stronger than me. If I was Lindsey, I don’t think I would come back to camp. I am sure I wouldn’t feel like swimming, canoeing, eating hot dogs around the campfire and singing happy songs. I’m sure I would be grumpy and not overly interested in doing anything. But cancer, chemo and losing your hair is, the only life that Lindsey knows. She was two years old when she was first diagnosed with liver cancer. Today she is 15 years old and is facing her fourth battle for survival.

She is a source of energy, wisdom and hope for all those who know her. Her parents marvel at her refusal to give up. I still don’t know what to say.  Maybe I’ll just say you inspire me Lindsey and I love you very much.

Monday, October 11, 1999

Today is Thanksgiving Day. Engraved in my soul is the anniversary date of Jason’s diagnosis with Leukemia. The sadness of the whole thing creeps into my skin and I become restless and carry a sense of foreboding that destroys my ability to accomplish anything.

So, I sleep for extra hours during the day until the holiday passes and I can continue with my normal routine. Yesterday every part of me ached with sadness. This morning I feel a bit better.

 

copyright © 2014 Sheila Ethier

It has occurred to me that the entries for my blog should be in order. I like the order of things. But like my memories that come from an unordered place in my mind, my blog will include journal entries written at different points of time.

This morning I am questioning why, God has chosen me to share my deepest thoughts on Joy and sorrow. As I look out the window I see a cold blanket of snow, a blue sky with a light haze of white wispy clouds and small gentle snowflakes appear in front of my window. How can that be? There is blue sky and no heavy snow clouds, where are the snow flakes coming from? I take a deep breath and realize there’s so much I don’t know. But I do know that I need to share my story.

The following are journal entries from 1999.

Saturday, November 27, 1999 

I am at Debaji’s having my morning coffee and a muffin. I like to spend time here because I feel so comfortable and content.  The exotic flowers in the flower shop are displayed in a glass and wood framed walk in cooler that is located near the center of the market. The restaurant is right next to the flower shop and I like to sit near the windows of the cooler. It is easy to take a peek at the beautiful roses, lilies, and other exquisite blooms that are pleasing to the eye and the soul. No matter what my mood is, whenever I look at the flowers on display I am easily filled with Joy.

Christmas is approaching and the displays in the market are beginning to take on the festive look of red ribbons, green spruce and gold winged angels. The decorative poinsettias, little white snowmen and Santa’s with bright red jackets are carefully placed on wood shelves held in place by wrought iron castings. The entire market is rich with old-fashioned charm and I am blessed to have found this corner of the world.

Yesterday I gave a reading from my first book at a luncheon for a mental health workshop. I was very pleased to be invited to share pieces of my story with the audience. After I read passages from my book, several people were interested in having me sign their copy of the book. With each autograph came a brief story of the person’s experience with mental illness.

It was difficult for me to refrain from getting caught up in their stories and I could feel the energy being zapped from my body. I am confident that I handled the book signing professionally and pleasantly but, I was profoundly moved by the people who were there looking for answers or information on mental illness. Or perhaps, they were just looking for a friend, someone who knows the struggle, someone to share their thoughts with.

The reading and the book signing session took only an hour of my time, but years from my soul. Well, today I will take my friends advice and take time for me.  I will try to be selfish and not so thoughtful.

Sunday, November 28, 1999 

There are tears this morning. The moisture in my eyes is clouding up my vision and thick drops are spilling out and streaming down my face. I tried to stop them, to distract myself with music from the car radio but that lonely achy feeling refused to leave my soul. So I just let them flow and continued to drive.

As soon as I arrived at Debaji’s, I quickly went to look for a friend. As soon as I saw her I said “I can’t stop crying would you please pour me a cup of coffee and smile your lovely smile.”  She followed me to the cafe and poured the coffee into my favorite coffee mug. With a concerned look on her face, she asked, “What’s wrong?” As I dabbed tissue on my face to carefully dry the tears so they wouldn’t muss up my newly made-up face, I shrugged my shoulders and said “I don’t know, the tears just came and I want them to stop.” I was embarrassed at the tears and walked over to the table and sat down on the familiar wooden chair. I am going to look at fashion magazines, sip on my coffee and take my thoughts away from Christmas, loneliness and sad things.

Oh lord, are you sure you have the right girl? Is it me who’s supposed to know this pain and share news of Joy in spite of everything that I see? With a sigh in my heart, I sit at the table, open the magazine and let the day begin.

Wednesday, December 1, 1999

I still want everything around me calm and in some form of order. Too much noise and clutter distracts me. I don’t want to clarify this point. I just know that my soul is longing to be with God.

There are two ways to view the adversity that have taken place in my life. One is to believe there is no God. If there is a God how could he let little children be sick? The other view is to believe that there is a God and that illness and suffering come from life. Sometimes God performs miracles and healing occurs. Because a child dies even though we have prayed for healing, we must not assume that God is cruel. If every soul born belongs with our heavenly Father, then perfect healing would be to be in heaven with God.

There are mysteries of this world that I don’t have the answers to. But I do know that my soul is connected to God and all the goodness that comes from faith. My soul longs to be with the Lord. Until he calls me from this world, I lay all of my fears, worries and sadness at the feet of the cross. I look for the good things that can come from life.

copyright © 2014 Sheila Ethier

 

 

Since 1987 I have been involved with childhood cancer, as a mother, a nurse and a friend. I have met many children who faced enormous battles for life. I write about some of the children in my journal. The following are journal entries from the year 2000.

Thursday, August 24, 2000

I remember their faces. Their precious little faces with the chubby cheeks and vulnerable eyes that would look into my eyes and my soul was touched by their loss of childhood days. In the space of a few seconds when the words “your child has cancer” reach your ears, your heart drops to the floor and you cry out in anguish. Oh, not my baby. In that short span of time your life has changed forever.

Sunday, September 10, 2000 

Camp Beat It was last weekend. Lindsey couldn’t make it to camp this year. She was in the hospital. Her dad and her brother came to camp. But their visit was cut short. On Saturday night while her father was sitting around the campfire laughing and sharing jokes with the rest of the parents a police officer came to notify him that his daughter was quite ill. They gathered their belongings and woke up Kris to return to the hospital to be with Lindsey. Donna was already there. By Sunday Lindsey was in acute respiratory distress and was transferred to PICU. Lindsey had a liver transplant this spring. Two more doses of chemo to complete her treatment. This last round of chemo was brutal. Lindsey acquired a severe blood infection referred to as septic shock which in turn caused her kidneys to fail and her lungs to fill with fluid and the toxins from the infection.  As a result she went into respiratory distress.

Today I went to see her. She was lying in a bed that was next to the room Jason was in when he was in PICU after the fire trauma. It would have been easy not to go up to see her and have to relive other days that were spent sitting at Jason’s bedside. But Lindsey is the sweetest most precious young girl that I know and she deserved to have a visitor come by and wish her brighter days and little girl dreams.

At first I didn’t recognize her, she was bald, her face was swollen and she had sores on her forehead. Her eyes were closed and there were several tubes in her mouth, one for oxygen, one for feeds and the other I’m not sure. There were six intravenous pumps delivering meds through plastic tubing to sites on her delicate little girl hands.

My thoughts brought me to “Oh how cruel life can be for some”. Lindsey wouldn’t admit to life being unfair she would tell me, Sheila, yes it’s no fun being sick, there have been many bad days, but I have had some very good times.

Sunday, October 22, 2000

Lindsey continues to recover in the Hospital. She has been transferred to a regular ward and her lungs and kidneys are on the mend. The last time I saw her she just wanted to go home and have a nice long bubble bath. Oh girl I thought, why not ask for a nice long cruise to warm tropical islands and you can sip sweet cool drinks from tall frosted glasses and eat fresh juicy grapes.

Saturday, December 30, 2000

I met Makenzie and her mother Crystal at the hospital three weeks ago while I was working on a picture display project for Kids with Cancer. In the few minutes that it took me to take pictures of Makenzie, Crystal spoke of the challenges she was facing. She only had to say a few phrases like, I just moved here to get away from a bad relationship, my little girl has cancer and I don’t know how I am going to manage on my own. I stopped taking pictures, the project didn’t seem as important as offering support to Makenzie and her mother. Would you like me get some clothes and toys for Makenzie and her brother? Crystal said that would be very helpful, but what I really need is a washer and a dryer. As I gathered up my equipment I spoke to Crystal and said let me see what I can do to help you get settled in your home.

By making several phone calls I was able to connect Makenzie’s mother with some generous people in Edmonton who wanted to help make this family’s Christmas a bit brighter. In a short period of time Makenzie’s new home had a washer and dryer, a dresser, bunk beds, a sofa and loveseat, a Christmas tree, some toys, little dresses for little girls and warm comfy sleepers for babies. There was also a simple white wooden rocking chair. A chair for momma’s to rock their babies to sleep while whispering stories of love and happy times.

copyright © 2014 Sheila Ethier

 

The Face of Courage

Journal entry for November 21, 2007

The early morning breeze caresses my face as I pedal my bike on the familiar pavement that will take me to downtown St. Albert. The journey through the small city is pleasant as I cruise toward the main street.  Shop keepers are getting storefronts ready for a new day of business and I see someone putting up a sandwich board listing the daily specials for lunchtime goodies.  Further down the street at a café bar, tables and chairs are being set out for folks who want to sit outside and enjoy today’s sunny skies.  I hope my mood allows me to savor the pleasures of this day.

After parking my bike in front of one of my favorite café bars, I enter the busy little shop and the proprietor yells out, “Hey neighbor, how’s it going?”  I chuckle and reply “Great, how are you today?”  I like the routine of chatting with the gals while my latte is being prepared, there is always something to laugh about and the merriment is good for my soul.  With drink in hand I then chose a comfy chair, dig through my backpack for my day-timer, pen and stationary. In the charming little café I somehow manage to keep busy with my creative mind and lots of paper.  After the last sip of steamed milk and espresso I pack up my backpack, head out the door and prepare for the next journey on my bike.

As usual I had to force myself to leave my house and take care of a few errands that I have put off because I haven’t been feeling well lately. To look at me you would never know that I face daily challenges with depressive illness. I always hear comments like “you look so good”, “you must be feeling better.”  I generally have no reply and produce a quirky grin and scrunch up my eyes.  What answer are they looking for?

If I am out and about in the community and able to chat with a friend I might run into, or actually complete my list of errands, one could assume that I am feeling better.  That I am cured of this insipid illness of grey fuzzy days and profound sadness; I can now live a life with purpose and go back to work.  What you don’t know when you see me in the mall, or the café bar is that by lunchtime my mood will be very low and my desire to be with people or do anything for that matter will have vanished.

In the morning when I rise to the new day I can sometimes feel the rhythm of calm ordered thinking.  I have created a comfortable routine for myself where I go out in the morning while I have the energy and peace of mind to accomplish the small goals written in my day timer. Then as the morning passes fatigue and apathy engulf my spirit, and I know it’s time to make my way home.  Sometimes fear of how I will get home causes me to panic; I’m filled with fear and riding my bike or walking home are impossible journeys ~ so I call my father to come and pick me up.

The ride home is quick as I never venture too far from home.  My father backs the car into the driveway; I grab my belongings and make a quick dash to the house.  A sigh escapes my soul as I enter the small room at the back of the house; my safe haven.  The bedroom is cozy and quaint, filled with teddy bears, pictures of family, and little treasures that remind me of days gone by.  Here in this room life is simple and I can usually escape from the pain of the past or the bothersome thoughts of the future.

Thirteen years have passed since I have heard the words, “you have major depressive illness” and I still ask myself – Where did I go?  Where’s that young girl with all the energy and enthusiasm for life? I vaguely remember days of plenty of activity and lots of social contact.

I was the happy friend with lots of giggles, smiles and jokes.  Now I am reclusive and you rarely see me out and about in the late afternoon or evening. Friends and family have grown accustomed to my hibernation but, do not understand the tumultuous emotions that render me helpless and fill me with a sense of anxiousness and restlessness.

Many people know of my battle with depression and they also know of the numerous obstacles that have made my journey to health and happiness extremely bumpy.  People often say that I am a woman of great strength and courage.  I used to argue that statement over and over in my mind; doesn’t anyone see the tears in corners of my eyes?  Don’t you feel the perpetual anguish or hazy melancholy that wreaks havoc in my brain?  Don’t you know how difficult it is for me to leave my home?  Courage, there is no courage in this spirit; you’ve got the wrong lady.

And then one ordinary day while I’m out running my errands, I came across a print with the following inscription:

Courage doesn’t always roar, sometimes courage is the quiet voice at the end of the day saying –I will try again tomorrow.  (Mary Anne Radmacher)

I wrote the words in my little day timer so I wouldn’t forget them. When the day has been incredibly rough; when I think I can’t take one more minute of living with the darkness of depressive illness, I hang onto those words, say a silent prayer to God, close my eyes and wait for sleep to come.

Now when someone suggests that I am person with courage; I say “thank you for the kind words” and smile, indeed I know the face of courage.

copyright © 2014 Sheila Ethier

 

 

Excerpt from my Journal

 

January 8, 2011 

I have a deep personal relationship with God, but I don’t go to church on a regular basis. My faith is not based on my routine of going to church, it is based on what I feel deep in my soul. I was born and raised in the Roman Catholic faith and I do hang onto my religion. I have daily rituals where I light candles and say silent prayers for family or friends. Sometimes the prayers are for me, pleading for mercy and healing from depressive illness.

Recently I have felt that I should read passages from the Bible to help me learn God’s truth. So yesterday I bought a women’s devotional Bible. A nice compact one that I can carry in my purse or backpack. I made a promise to study God’s word from the oldest book in the world.

This morning I read the first verse from the book of Job and the daily devotional that was included in this Bible. As I read Job 1:21, I felt a conviction of purpose:

Naked I came from my mother’s womb and naked I will depart. The Lord gave and the Lord has taken away. May the name of the Lord be praised.

As a nurse, I have witnessed both birth and death. And it is true, we come into this world with nothing, we are naked and we depart with nothing and return to nakedness. You cannot bring anything with you. I was born with nothing and I will die with nothing everything in the middle is a gift. What then shall I do with this gift?

August 2011

How do you measure sadness? Where does sadness come from? Is this sadness real or true; or is my mind torturing me? Why does sadness keep picking on me? These thoughts touch me in a profound way. I am on this self-proclaimed journey of finding Joy in each day. For the most part I can see Joy in simple pleasures, especially if I am outdoors. The beauty in nature can take my breath away.

Today is a grim day. I feel sad, hopeless and overwhelmed by life. Why should I share this with you and bring you down to my sadness? Don’t you just want to run away from the pain and darkness and live in peace and light? Today I have no answers. No solutions to anyone’s problems. Ah, is that why I am sad? Because I can’t ease your suffering? Maybe so.

I have been tuned in to the suffering of others for as long as I can remember. When I was 4 years old we lived in a quaint house with a white picket fence and a bountiful garden in the back yard. There was a nice crop of corn.  In the fall harvest time my father went to pick the cobs of corn and it was there he discovered my secret. I was taking bowls of milk from the kitchen and leaving them in the corn patch for several cats. My parents could not figure out why all the bowls were missing and why we had so many cats in our yard. The fall harvest solved the mystery for my parents.

In terms of my altruistic nature and my career as a Registered Nurse, I have to say I feel more at home in a hospital than I do anywhere else in this world. Every time I walk into a hospital, I feel like I have come home. I love the look of hospital corridors, hospital rooms, and I love the busyness of getting on with life. Hospitals meet people at all stages of life; birth, sickness, health, and death. It’s a vulnerable scary place for most people, especially if you are a patient. And I do acknowledge that I would rather be a nurse, than a patient.

Currently I am working on a casual basis at our local hospital. My heart belongs to pediatrics but I can’t bring myself to work at the children’s hospital where Jason had his three year chemotherapy protocol. Too many reminders of his fight for life. For me at this time in my life helping moms and dads bring their new baby to this world brings me great satisfaction. The celebration of birth fills me with hope.

For the most part I can leave work with a smile on my face and know that I am helping families. The challenge for me is to find boundaries in helping people when I am not at work. If someone comes to me and asks for help, I will not refuse the request. I will brainstorm, right lists, call others to help and do all that I can to help someone in need. I believe in faith, hope and charity. If I have what you need I will give it to you. If I don’t have it, I will ask the universe to get help for you.

I know that I am not alone in my altruism, I have met some very generous people throughout my life. I find nurses to be gentle caring people and I think many nurses work after hours. The rate of caregiver burnout is high for people who help the sick and vulnerable. I have accepted that I will always have an altruistic spirit and as I get older I am trying to find a balance in helping others and taking care of me. If I am broken, how can I help you?

copyright © 2014 Sheila Ethier