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Partially driven by a need to synthesise and manage my experience with Stacy both during her illness and in our life before, and partially following an urge to explain the unknown disaster of Motor Neurone Disease I have decided to write this story.
My Favourite Part is a decade long story of two people; from a meeting as near teenagers in a summer camp in New York, through to a tragic early death in the suburbs of Brisbane. Honest, graphic and personal descriptions of a glorious romance and spectacular disaster. This story aims to highlight the magnificence of humanity's shared ability to love and sacrifice, to live with humour and courage, and to strive to achieve even when facing certain failure. The story will be completed soon, and I'm happy to share the opening moments below. |
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My Favourite Part
by Mike Neild
Chapter One: Bus
I sit in the Seattle airport in 2013 on my way to Great Falls, Montana, a route I have followed before and a journey that hangs thick with emotional significance. This is the well-worn path from me to her. It’s a path of joy and longing, of excitement and the shared certainty, and uncertainty, of crossing the world into the embrace of a soul mate.
This trip is different, it’s unlike all those that have gone before and will be unlike any future versions to come. Today I'm crossing the world to attend the funeral of my life partner; my wife, Stacy. Dead and gone from the physical world at thirty-one years old. A bright spark, and a glorious testament to the human spirit, Stacy's journey through life, like all of our lives, is a story too large and intricate to be told as anything but a shadow of the real thing. I'll attempt to tell a small part, not her whole life, just a favourite part.
As I sit in the terminal, images and memories wash through my mind…
…..
Stacy dances in her college living room. She dances by herself in the middle of the day with only simple music and year-round Christmas lights stapled to the wall for company. I watch her move and see life and joy.
She was not afraid to dance by herself, and through the lovely poetic irony that is life, she was therefore rarely left on her own for long, on a dance floor, or otherwise. Her lounge room was not a dance floor, and her college campus was not a family reunion, although Stacy at times treated them both as such. In those days, Stacy had the idea that if she approached her life with confidence and expectation then the world would return to her the varied and exciting experiencesshe yearned for. It was a pretty strong idea to have.
She dances on in the foreground of my mind. Memories move on…
…..
Stacy looks at me from the recliner chair that physically confines her. It’s infuriatingly difficult to communicate anything more than essential movement requests and bodily needs: food, water, scratch, reposition.
She’s changed, no longer the tall strong woman with the irrepressible golden hair. Her blue-grey eyes shine now from a sunken and gaunt face, robbed of their mischievous glint. Where once there was hard earned muscle and tone, now sharp bones press against thin skin.
She looks at me in a rare quiet moment, a moment of peace and grace, gratefully accepted by two people desperately trying to survive an inhuman experience. She cannot move, she cannot talk, but she’s completely conscious and aware as she looks at me. With no words spoken between us she says, ‘I see you and I thank you’. With a truly honest heart I send the same message back.
.....
My memory takes me flying free from the Seattle airport lounge in 2013, back to the start. Before the start even, back to a time before Stacy. It’s 2001 and I’m riding the Summer Camp’s, yellow school bus towards New York City. It’s a preferred destination for my wandering subconscious, the day I met Stacy.
I had a busy twenty year old mind that day. Riding on a forty year old bus. Jumbled thoughts and feelings: exuberance, trepidation, distraction and focus were constantly at war inside me. There was an overriding sense of the need to complete the task at hand and get back to the safety of my summer home-away-from-home, Camp Echo. I was a person on the brink of a concussive and life altering meeting. I had the job of riding down to LaGuardia Airport to pick up the new American staff, the counselors I would be working with all summer to look after three hundred children from Long Island. I had a hand-written list of fifteen names, times and flight numbers. Along with fellow Camp Echo devotee, Dawn Scott, we drove south out of the foothills. We debated the pronunciation of one surname: 'Frey'. She thought ‘Fry’ like the American word for hot chips; I thought ‘Fray’ like the fibres at the bottom of an old jumper. She was right, and in time I would learn the name well.
The bus drove slowly, and I carried the responsibility with the conviction and commitment that was striving to be established as a part of my character. Dawn stayed with the bus as it drove in circles around the airport, while I searched the terminals to meet the faceless names on my list, youngAmerican needles walking around a giant concrete haystack. With time passing and some pressure mounting I was forced out of my comfort zone. I noticed a group of college-looking types sitting in a loose oval beneath a window. I walked over to the group and said, "Do any of you kids want to go to Camp Echo?" As the people I had spoken to were opening their mouths to answer, a person who had been busy rummaging in her bag, burst up and into my eye-line in a flurry of curly blond hair and gleaming blue eyes, "I didn't know there were going to be foreigners here. This is going to be fun!"
Somewhat lost for words and still without a clear answer to my question, the responsibility fell to the clearly excitable woman to do the introductions. "I'm Stacy. Who are you?" "Mike, from Camp Echo,” I managed. Stacy quickly took control of the situation and seeing that I had a list, proceeded to introduce me by name and state to the ten people who she herself had only just met. I was immediately struck by the confidence and endearing familiarity that this beautiful woman possessed. My task was not complete, and I made some noises about the four additional people still to be collected. With a spring in her step Stacy, despite the total lack of invitation, joined me on a continued search of the airport.
I had the flight numbers and times of the remaining counsellors and thus Stacy and I headed off on our first activity together. She felt the drag of my gentle pace, and I felt the pull of her spirited cadence as we searched at completely different speeds. Stacy was a few steps ahead of me as she boarded an escalator. I stopped to recheck the arrivals board mounted on the wall. Noticing she was alone, Stacy turned and saw me standing on the floor below. She was forced to begin walking down the steps of the moving escalator in order to stay in sight of the supposed leader of the expedition. An exasperated word, a laugh and with body language bridged somewhere between confusion and amusement Stacy continued to tread water on the insistently escalating stair. Feeling rushed and also a little motivated I caught up, and we continued on with a mutual intrigue born of difference curiously growing between us. Stacy impressed again as she found and welcomed her new co-workers to New York and began the process of building a Summer Camp family. The bus was contacted, and with adventure prickling between us the large group of young and highly excited college students clambered aboard. As we wrestled Felecia Burnstein’s four matching luggage pieces onto the retro school bus, Stacy and I looked at each other in an unspoken moment of amusement. Her smile was shockingly irresistible. I smiled back.
The bus was long, stiff and old. Seats of steel and vinyl filled the otherwise sparely adorned space. The organic roll of the walls and ceiling gave the feeling of an age of beautiful machines from history, the vertically sliding window slits, with their limited range of movement, communicated both freedom and constraint. It was a school bus full of memories, and on that early summer evening it felt like an instant home. For those of us gathered together on our way to a foreign place and an unknown time, the bus was our shuttle and our cradle.
I sat sideways in the front seat to discuss the seemingly simple task we had just completed with significant effort, and was able to see back down to the group of passengers we had collected. The bus heading north that night was packed full of Americans from across the country who were happy to be out of their home state, out of college and just a little bit out of control. The group bubbled with multiple conversations, introductions and some clearly stimulated interactions. Dawn and I watched in a slightly removed fashion. The volume and energy of the group seemed to increase closer to the rear of the bus. My eyes were drawn through the fluctuating activity and noise coming from everyone in the cabin and I regularly found myself focusing on the blond haired girl in the back row. She sat in the absolute rear of the bus, on the slightly elevated back seat. She was leaning forward and engaging with everyone who had swiveled around to face the middle or the back. I looked across the action and as we repeatedly made eye contact, I felt an urge to be near that girl.Feeding on her own apparent sense of joy and need for connection, Stacy instigated a sing-along among her newly formed friends, and the bus rocked into the forest of New York State with The Joker, by The Steve Miller Band, cascading up and down its seats. Smiles grew and fears abated. People leant back in their seats and into their new situation. Students who were strangers lifted their voices and dropped their inhibitions. They sang together and they rode forward into the evening with the sense that they were not alone, that they belonged with each other; belonged with the other jokers on the bus. Blue eyes meet brown down the length of a bus, through a crowded scene and from across the world.
by Mike Neild
Chapter One: Bus
I sit in the Seattle airport in 2013 on my way to Great Falls, Montana, a route I have followed before and a journey that hangs thick with emotional significance. This is the well-worn path from me to her. It’s a path of joy and longing, of excitement and the shared certainty, and uncertainty, of crossing the world into the embrace of a soul mate.
This trip is different, it’s unlike all those that have gone before and will be unlike any future versions to come. Today I'm crossing the world to attend the funeral of my life partner; my wife, Stacy. Dead and gone from the physical world at thirty-one years old. A bright spark, and a glorious testament to the human spirit, Stacy's journey through life, like all of our lives, is a story too large and intricate to be told as anything but a shadow of the real thing. I'll attempt to tell a small part, not her whole life, just a favourite part.
As I sit in the terminal, images and memories wash through my mind…
…..
Stacy dances in her college living room. She dances by herself in the middle of the day with only simple music and year-round Christmas lights stapled to the wall for company. I watch her move and see life and joy.
She was not afraid to dance by herself, and through the lovely poetic irony that is life, she was therefore rarely left on her own for long, on a dance floor, or otherwise. Her lounge room was not a dance floor, and her college campus was not a family reunion, although Stacy at times treated them both as such. In those days, Stacy had the idea that if she approached her life with confidence and expectation then the world would return to her the varied and exciting experiencesshe yearned for. It was a pretty strong idea to have.
She dances on in the foreground of my mind. Memories move on…
…..
Stacy looks at me from the recliner chair that physically confines her. It’s infuriatingly difficult to communicate anything more than essential movement requests and bodily needs: food, water, scratch, reposition.
She’s changed, no longer the tall strong woman with the irrepressible golden hair. Her blue-grey eyes shine now from a sunken and gaunt face, robbed of their mischievous glint. Where once there was hard earned muscle and tone, now sharp bones press against thin skin.
She looks at me in a rare quiet moment, a moment of peace and grace, gratefully accepted by two people desperately trying to survive an inhuman experience. She cannot move, she cannot talk, but she’s completely conscious and aware as she looks at me. With no words spoken between us she says, ‘I see you and I thank you’. With a truly honest heart I send the same message back.
.....
My memory takes me flying free from the Seattle airport lounge in 2013, back to the start. Before the start even, back to a time before Stacy. It’s 2001 and I’m riding the Summer Camp’s, yellow school bus towards New York City. It’s a preferred destination for my wandering subconscious, the day I met Stacy.
I had a busy twenty year old mind that day. Riding on a forty year old bus. Jumbled thoughts and feelings: exuberance, trepidation, distraction and focus were constantly at war inside me. There was an overriding sense of the need to complete the task at hand and get back to the safety of my summer home-away-from-home, Camp Echo. I was a person on the brink of a concussive and life altering meeting. I had the job of riding down to LaGuardia Airport to pick up the new American staff, the counselors I would be working with all summer to look after three hundred children from Long Island. I had a hand-written list of fifteen names, times and flight numbers. Along with fellow Camp Echo devotee, Dawn Scott, we drove south out of the foothills. We debated the pronunciation of one surname: 'Frey'. She thought ‘Fry’ like the American word for hot chips; I thought ‘Fray’ like the fibres at the bottom of an old jumper. She was right, and in time I would learn the name well.
The bus drove slowly, and I carried the responsibility with the conviction and commitment that was striving to be established as a part of my character. Dawn stayed with the bus as it drove in circles around the airport, while I searched the terminals to meet the faceless names on my list, youngAmerican needles walking around a giant concrete haystack. With time passing and some pressure mounting I was forced out of my comfort zone. I noticed a group of college-looking types sitting in a loose oval beneath a window. I walked over to the group and said, "Do any of you kids want to go to Camp Echo?" As the people I had spoken to were opening their mouths to answer, a person who had been busy rummaging in her bag, burst up and into my eye-line in a flurry of curly blond hair and gleaming blue eyes, "I didn't know there were going to be foreigners here. This is going to be fun!"
Somewhat lost for words and still without a clear answer to my question, the responsibility fell to the clearly excitable woman to do the introductions. "I'm Stacy. Who are you?" "Mike, from Camp Echo,” I managed. Stacy quickly took control of the situation and seeing that I had a list, proceeded to introduce me by name and state to the ten people who she herself had only just met. I was immediately struck by the confidence and endearing familiarity that this beautiful woman possessed. My task was not complete, and I made some noises about the four additional people still to be collected. With a spring in her step Stacy, despite the total lack of invitation, joined me on a continued search of the airport.
I had the flight numbers and times of the remaining counsellors and thus Stacy and I headed off on our first activity together. She felt the drag of my gentle pace, and I felt the pull of her spirited cadence as we searched at completely different speeds. Stacy was a few steps ahead of me as she boarded an escalator. I stopped to recheck the arrivals board mounted on the wall. Noticing she was alone, Stacy turned and saw me standing on the floor below. She was forced to begin walking down the steps of the moving escalator in order to stay in sight of the supposed leader of the expedition. An exasperated word, a laugh and with body language bridged somewhere between confusion and amusement Stacy continued to tread water on the insistently escalating stair. Feeling rushed and also a little motivated I caught up, and we continued on with a mutual intrigue born of difference curiously growing between us. Stacy impressed again as she found and welcomed her new co-workers to New York and began the process of building a Summer Camp family. The bus was contacted, and with adventure prickling between us the large group of young and highly excited college students clambered aboard. As we wrestled Felecia Burnstein’s four matching luggage pieces onto the retro school bus, Stacy and I looked at each other in an unspoken moment of amusement. Her smile was shockingly irresistible. I smiled back.
The bus was long, stiff and old. Seats of steel and vinyl filled the otherwise sparely adorned space. The organic roll of the walls and ceiling gave the feeling of an age of beautiful machines from history, the vertically sliding window slits, with their limited range of movement, communicated both freedom and constraint. It was a school bus full of memories, and on that early summer evening it felt like an instant home. For those of us gathered together on our way to a foreign place and an unknown time, the bus was our shuttle and our cradle.
I sat sideways in the front seat to discuss the seemingly simple task we had just completed with significant effort, and was able to see back down to the group of passengers we had collected. The bus heading north that night was packed full of Americans from across the country who were happy to be out of their home state, out of college and just a little bit out of control. The group bubbled with multiple conversations, introductions and some clearly stimulated interactions. Dawn and I watched in a slightly removed fashion. The volume and energy of the group seemed to increase closer to the rear of the bus. My eyes were drawn through the fluctuating activity and noise coming from everyone in the cabin and I regularly found myself focusing on the blond haired girl in the back row. She sat in the absolute rear of the bus, on the slightly elevated back seat. She was leaning forward and engaging with everyone who had swiveled around to face the middle or the back. I looked across the action and as we repeatedly made eye contact, I felt an urge to be near that girl.Feeding on her own apparent sense of joy and need for connection, Stacy instigated a sing-along among her newly formed friends, and the bus rocked into the forest of New York State with The Joker, by The Steve Miller Band, cascading up and down its seats. Smiles grew and fears abated. People leant back in their seats and into their new situation. Students who were strangers lifted their voices and dropped their inhibitions. They sang together and they rode forward into the evening with the sense that they were not alone, that they belonged with each other; belonged with the other jokers on the bus. Blue eyes meet brown down the length of a bus, through a crowded scene and from across the world.
