Personal Stories

Gone from Sight

Marjorie wanted the world to know about the silencing disease that impinged upon her life. I want the world to know about Marjorie and how an illness conspired to awaken the endless mystery of love between kindred spirits.

Let me take you back to days when we cared for Mum, days wished longer, days when I could neither pause to think about nor divine the future awaiting me.

Our family was coping with Amylotrophic Lateral Sclerosis and it governed our lives. A disease unknown, incurable, it dished out physical loss after physical loss as it relentlessly assailed Mum’s muscles. It assaulted Dad with feelings of helplessness and fatigued us in pervasive ways known to caregivers everywhere. Yet as we struggled, we grew stronger. Our far-from-perfect, large, diversified, loving family came to reach out to others, receive help and laugh plentifully

After six swift months, Mum died gently and serenely. She had blue eyes and a smile.

In time, my thoughts turned to other loved ones living with Lou Gehrig’s Disease. I think I was most inspired by a sequence of letters read on CBC radio. A young husband and father, who called himself “The Incredible Shrinking Man”, wrote them to “Morningside”. Interest in his ALS story and a deepening concern for his little family, allowed me to move beyond my own grief, beyond my own family. With nothing more complicated than fleeting notions of helping, a door slowly opened in my life. I became a Support Services Volunteer with the ALS Society of Prince Edward Island and learned to see the precious treasures and intricately dropped threads of love found in the tapestries of final journeys.

Always feeling graced, never feeling invincible, I entered home after home discovering joy and sorrow while meeting the most remarkable people. Every life lived with ALS is unique and common at the same time. My first-hand experience provided me with insight that enabled trust to develop. I could assure dear families that, although I came without the magic wands we so desired, they could draw on strengths that were wonderfully magical. I knew that fears discussed
lost their mastery and that frail bodies harboured resilient souls.

With time, I became better at listening to what was being said while hearing what was not. I often surprised myself with the accuracy of my intuition and it came to merit respect. More than anything else, I felt myself incredibly fortunate to be welcomed into lives at the time when so much that is essential blossoms. There are valuable riches hidden in illness.

I was at one with others involved in Hospice/Palliative Care volunteering. We often attend funerals alone. After all, the person mourned is neither relative, family friend nor colleague. Yet we feel the pain of their death and their significance in our lives is unforgettable. It is on arduous, solitary drives to funerals that my mind rests with others doing the same as I.

Ten years of departures slipped by, and I could always summon the endurance needed to face the disease. Deep inside though, I wondered if one day, I would meet someone who would take all that I had to offer, command all my inner resources and leave me unable to continue. That unspoken apprehension was not unfounded. Marjorie arrived like a gust of wind and before the syllables in her name flowed smoothly, my heart knew it would be broken.

I will begin her story with an ending.

It was 7:40 pm in the eve of New Year’s Day, 2000 and I was cleaning a pot at the kitchen sink when I realized I had to listen to a persistent inner voice. And so, on a snowy Saturday night, at the start of the new millenium, I drove 65 kilometers from Summerside to Charlottetown to see Marjorie.

Her sister was giving her crushed ice to chew on when I arrived. She was exhausted and I assured her I was not there to visit, but to say goodnight. Her beloved husband Bob settled her comfortably in bed, called me in, and left the room. I knelt beside her and held her hands.

She thanked me for coming. I told her I was grateful our paths had crossed. She told me she loved me. I told her I loved her too. “You’ll always know where to find me” she replied. Smiling at the remembrance of previous conversations, I answered “On cloud nine, but please Marj” I added, “When you get there, be sure to hang on to me and pull me up – don’t let me go anywhere but up”! We laughed and she promised she would. She asked me to phone and let her know when I arrived home. She told me again that I was a “dear” for coming. I kissed her forehead and said “goodnight”.

I knew when the phone rang early the next morning. Marjorie was gone from sight forever.

One knew at once that it was not only her arms that embraced, but her heart.”

Our friendship had begun with a phone call and I’m sure my answering machine must have chuckled as it recorded; “I don’t know why I’m calling you, I simply don’t know. Everyone is telling me I should. I wait two months and what do I get – an answering machine. Do I want to talk to this contraption? No! If you want to phone me, do so at… and, yes you are right; I have that ungodly Lou Gehrig’s Disease. And no, I have never played baseball”!

The first day we met, she stood almost six feet tall in her kitchen doorway, red earrings dangling, red lips raging. “Look at me – I’m sixty years old. What am I doing with this disease? I don’t want to die! I have too much living to do”! I looked up at her, overwhelmed by the space she filled – her vitality palpable. The insults of a ruthless disease flashed before me. Where was the journey we were about to share going to take us? Could we find peace? Why this horrible sinking feeling? Maybe I knew then and there I was going to love her. I remember feeling terribly vulnerable and saying to myself “When you die, I’m never going to want to see another person with ALS”. Filled with uneasiness, I cried out silently for help and gave my attention to the imposing extrovert before me.

We sat down with Bob for a delight-filled lunch. On the way home, I could not dismiss my initial impressions. I knew it would be prudent to make plans for my ALS retirement.Over the next twenty months, I came to appreciate many extraordinary qualities in the mother, wife, grandmother, sister, friend who was Marjorie. The characteristic that best defined her, and absolutely captivated me was her ability to hug. Her arms, she would matter-of-factly explain, were God-given for that purpose. And hug she did, in a most indiscriminate manner. Hugs were a sort of charm that equalized and beguiled all. Resistance was futile. She marched forward, swooped in, and held on.

I never felt that Marjorie failed to see faults in those whom she welcomed into her arms, or that
she would ever think of claiming perfection in herself. Her hugs, unconditionally given, celebrated the good in people and offered a moment of solace in a world that often neglects simple pleasures. One knew at once that it was not only her arms that embraced, but her heart.
Therein lay the true magic of her unique communication.

Tagore, Bengali poet and Nobel Laureate wrote, “Love is an endless mystery for it has nothing else to explain it.” So with Marjorie, there was nothing rational to explain the love she shared. But her “heart hugs” made everyone feel so very special.

My finite words can never express the infinite strength of the human spirit. While looking straight at her own mortality, Marjorie decided to live marvelously and fully. She and Bob planned a trip – a pilgrimage as it was called – 9052 kilometers of driving and visiting across Canada. During the weeks they were away she phoned with happy reports. I cheered and kept my fingers crossed! They returned home fortified by renewed friendships from a past that included 24 years of Air Force life.

I don’t know if she ever realized that or how much she was giving by allowing so many to share her life to the end.”

Marjorie was noticeably weaker. It saddened me to see the disease firmly clutch her, as I knew it would. Sheer determination kept her walking and I prayed she wouldn’t hurt herself badly when she fell. I knew that falls could be most hurtful in ways that do not meet the eye, but Marjorie always managed to pick herself up, both literally and figuratively, and continue on. Of course, many of my sage suggestions, although carefully considered, went unheeded. I
would say what should be said, smile and bow away. She was the maestro; she held the baton; she held the wand.

Personal experience had shown me how nights become nightmares for people trying to sleep with ALS. Frequent arousals, discomfort, breathing problems, twitches – all combine to disturb slumber. Marjorie admitted to “grumping to herself” during those dark, lonely hours. But in daylight, there was no complaining, “For who, she worried, would ever want to be around, or even talk to someone whining ‘poor me’?” Instead, she greeted and celebrated each day with
defiance and gusto, and tried to dismiss the constant, haunting fatigue.

Fortunately, she and Bob decided to leave the door to their home open, as it had always been. Hundreds walked through it. Marjorie’s wit sparkled and her laughter was shared – its healing touch affirmed time after time. Tears were shed, love was steadfast, hearts ached, abiding joy astounded. Dying was an enriching experience indeed.

And I, as months with Marjorie came and went, made definite plans for future ALS families to befollowed differently. I would no longer visit them directly. A service was developed that required my participation as a planner and trainer so that others could provide personal contact. I cared deeply for those with ALS whom I was then seeing, and their life stories certainly held the same importance as Marjorie’s. Their families meant the world to me. However, Marjorie and I
connected – old, old spirits who happened to stumble across each other and recognize that they had. I was afraid to contemplate starting a new, close, walk. I did not want to drain myself emotionally and I knew that Marjorie’s loss would be more painful than others had been.

In the meantime, I looked forward to each and every visit with her. When she and Bob were home alone, he would graciously excuse himself giving us moments for private conversation. It was then I heard about fears, frustrations, pains and struggles. All this, in discussion peppered with humour and imaginative ramblings concerning her Cloud 9 destination. We talked a lot about the difficulty in accepting from others. She, who gave all her life, found it extremely
difficult to receive. Kindness by her cherished sorority sisters overwhelmed her. She told me again and again that she couldn’t understand why people were being so good to her. I sent her a card on which I wished, “I hope you can see the beauty within that so dazzles those who love you”. For as ALS wasted her body, it polished her soul to a high gloss. I don’t know if she ever realized that or how much she was giving by allowing so many to share her life to the end.

I was sitting at Marjorie’s funeral listening to scripture readings from John and the Hebrews. I was wondering why her family had selected passages that spoke of faith rather than of love. Our parting words were also running through my mind. They had made a profound difference in my loss, had comforted and strengthened me. And while gratitude for that tender parting touched my inner being, I tearfully tried to reflect on the words of wisdom being read. Unexpectedly, but with clarity, a message that had traversed centuries became meaningful in my life.

Marg and I had not only shared a good-bye, but a perfect affirmation of presence. A presence revealed in love – love nourished by faith. It was as though Marjorie’s hugging arms enveloped me, assuring the presence of that love which transcends death; revealing the presence of that love which sustains and empowers; unveiling the presence of that love which consoles and bestows the very peace I feared elusive when first we met. A quiet smile crossed my heart as I let myself receive Marjorie’s blessings. I knew I would be able to continue to let people with ALS grace my life. That was Marjorie’s gift to me.

I miss my friend. But I know she is only gone from sight.

Copyright © Marie Salamoun-Dunne, Summerside, PEI