Marathon Wheeler

Marathon Wheeler: Living with Physical Disability

Copyright © 2023 by Heather S. Coombes.

Paperback ISBN: 978-1-63812-535-8

Hardback ISBN: 978-1-63812-579-2

Ebook ISBN: 978-1-63812-534-1

All rights reserved. No part in this book may be produced and transmitted in any form or byany means, electronic, or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the copyright owner.

The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher hereby disclaims any responsibility for them.

Published by Pen Culture Solutions 01/19/2023

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Contents

Preface

Acknowledgements

Introduction

1Rooted in Family

2Fragile Beginnings

3Security and Strangeness

4Growing Up Fast

5The Agony and the Ecstasy

6Flying the Nest

7Forging a Path to Ministry

8Adventure in the Subtropics

9Faithfulness Tested

10Community Found

11Leading Through Others

12Salute To People Who are Ageing: Partners in Life

13Retirement: a Change of Pace

14God Gives Breath for the Marathon

Appendices:   Hints and Reflections on Everyday Living for People with Disability

Introduction

Appendix AA Welcoming Church Including People with Disability

Appendix BSurviving the Difficulties and Frustrations of Living With Disability

Appendix CHolidays Enrich Life for People with Disability

Appendix DHumour Lubricates Awkward Situations

Appendix EAcknowledging Personal Feelings and Relationships With Others

Appendix FCoping with Pain, Discomfort, and Other Physical Situations

Appendix GTending to Your Mind And Attitudes

Appendix HNurturing Your Spirit as You Cope with Disability

Bibliography

Endnotes

Dedicated to the memory of a faithful dad, Keith, to a loving mum, Shirley, a caring brother and sister-in-law, Malcolm and Carolyn, my fun-loving nephews and niece, Tim, Beth, Pete, and Chris, and to those brave souls, Amy, Lauren, and Andrew, who have joined our family through marriage.

Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight and the sin that clings so closely and let us run with perseverance the race that is set before us, looking to Jesus the pioneer and perfecter of our faith, who for the sake of the joy that was set before him endured the cross, disregarding its shame, and has taken his seat at the right hand of the throne of God.

—Hebrews 12: 1–2 (NRSV)

Preface

Welcome to Marathon Wheeler. The experience of disability is not a one size fits all scenario. Each of us is unique, so this memoir, personal reflection, and collection of handy hints will not be helpful to everyone. Imagine you are in a department store with many items on display to tempt the buyer. Enjoy the experience of browsing. It is my hope that you will discover in these pages some insights you will find beneficial.

What would I like to achieve in writing this book?

1.The initial part of the book tells some of my story, from a Christian perspective as a person with cerebral palsy who spends a lot of time in a wheelchair. In sharing my experiences, I trust that you and others may see the possibilities of life and service in the midst of physical difficulty.

2.Chapter 14 concludes the narrative by tracing my understanding and experience of God, including an authentic view of life which deals with the toughness and blessings that meet me each day.

3.The appendices give practical ideas I have discovered along the way for people with physical disability. I hope they are of assistance as you reach your potential.

4.The appendices also share practical hints for friends, carers, church members, and others who wish for a deeper understanding of the experience of physical disability.

It is my hope that in reading the words that follow, you find energy and breath to run, paddle, or wheel your marathon.

Heather Coombes

2016

Acknowledgements

Heartfelt thanks go to family and friends who encouraged me in this project, read the manuscript, and navigated me through the hissy fits of my computer.

Thank you to the staff of Westbow Press who have supported me through the production of this book.

Sincere efforts have been made to correctly attribute the sources of quotations and ideas wherever possible. Where I have failed to do so, I offer my apologies.

Warmest gratitude goes to Dr Robin Parsons for her faithful editing and restructuring of the manuscript. Final responsibility for the content remains with me.

Introduction

Retirement as an aged care chaplain from UnitingCare Ageing Central Coast (New South Wales, Australia) offers me an opportunity to ponder on my experiences of life so far.

My first attempt at writing this book ended explosively when I lost thirty-three pages of a fledgling creation. My computer crashed, humming and flashing its contents into oblivion. The preciously crafted creation disappeared mysteriously into the ether. Fiery words hit the ceiling. It has taken me a year to begin again. There are echoes here of author Ernest Hemingway, who wrote a whole manuscript which he absent-mindedly left on a train, never to be seen again. Still, like all persevering writers, he picked himself up and began from the beginning — once more.

The importance of perseverance like this is a strong theme of the book. Its significance is reflected in the choice of title, Marathon Wheeler. Having a chronic disability requires that, like many others, I live with challenge for the long haul. The experience is not a quick sprint around the block. I, along with many, have to dig deep into God-given inner resources to live whatever years are granted to me with gutsy purpose.

This book is not written to boast that I have made it in the journey to live my life in a God- honouring way. I have a physical disability: cerebral palsy, in the moderate to severe range. Some have said to me, Isn’t it great that you have accepted your disability and you have overcome your difficulties? I prefer to see it as an ongoing pilgrimage. Even in my sixties, I get grumpy. I am still trying to make sense of physical challenge, occasionally rebelling against difficulties. I am in the process of overcoming, and I still struggle—hopefully with a touch of style. Until I breathe my last breath, my quest to live life faithfully with the circumstances that are mine will continue. So this is shared with you in the spirit of one beggar telling another beggar where to find food.

While this book is written to encourage people with disability and their families, I hope that fellow travellers with different life experiences will find hope in it too. It is penned from a Christian perspective. I trust that this particular gentle lens, through which I look at the world, will be life-giving for other seekers also. Churches seeking to extend their ministry with mobility-challenged people may find it useful too. It is partly a memoir, partly a sharing of faith, and partly a practical toolkit for people with physical disability and their enablers on how to survive a different journey.

1

Rooted In Family

Family of Origin

While travelling my path of adventure, I do not move on alone. Mine is not a solitary existence. We, together, are made for community. In fact, there are many people who shape us. To borrow physicist Isaac Newton’s expression, we stand on the shoulders of giants. Even famous, skilled people do not arrive at their destinations purely by pulling up on their own bootstraps. There are people who are our models—people who inspire and who influence us in big and small ways. Warren Buffett, a US financier, said, Someone is sitting in the shade today because someone planted a tree long ago.¹

I have reaped the benefits of the work and attitudes of people in my past and present. Let me share with you brief glimpses of the devoted people who influenced me to be the person I am today.

Grandparents

My positive relationships with grandparents were strong preparation for a later career in aged care. Each played his or her part in shaping my values and ministry. I learned from them as they faithfully lived their lives and faced challenges as age crept on. I also saw the effect of those difficulties on Mum and Dad as they cared for them.

Ma (Lily Coombes) — Deaconess

Ma’s grey hair was always arranged in a tight bun. Crystal beads hung round her neck, one of the few concessions she made to wearing jewellery. A devout person, she lived simply and was born of strict Scottish Presbyterianism. Although my grandmother was not prone to excitement, her kindly brown eyes twinkled when something caught her fancy. Her clear sense of right and wrong emerged from a disciplined upbringing. Ma’s ideal of sacrificial service was faithfully lived through her fingertips—a quality that shone as she stood by her man during missionary service in India. Ma’s courtesy, generosity, and care toward her grandchildren seeped through her being.

Christianity was the root of her existence. In that spirit, she quoted, As thy days so shall thy strength be (Deut. 33:25 KJV). I recall the verse when I am tired. I am not given strength by God just for the years of my life, but for the days, the hours, and the minutes.

My grandmother taught me about grief. The tender respect she held for her beloved husband was strong, but it was only in her bereavement that I realized its depth. Imagine my surprise when we visited her as a new widow. Here was a strait-laced lady reading a romantic novel. Her pastime provided the reassurance of love she was sorely missing. Tears glistened in her eyes on another occasion as she waved goodbye to Mum and Dad, who were about to travel overseas. Perhaps she thought she might never see them again. These pictures of open grief softened my image of a strict grandma, making me sensitive to losses older people face as they surrender precious loved ones.

However, goodbyes are often followed by welcomes. My brother and sister-in-law brought their first newborn son to his great-grandmother. She held the little one (happily born on her husband’s birthday) with a smile of delight on her wrinkled face. New life touched her tender heart.

Pa (Victor Coombes)—Minister of Religion

How does one paint a picture of this dedicated, dignified Christian who spent much of his life in church mission administration? Pa’s skill in dealing with copious correspondence, coupled with conscientious stewardship of people’s money, made him a diligent leader. His passionate advocacy in the public Christian arena and his understanding of Aboriginal people were qualities for which he is remembered. He was one of the members of the founding committee of NAIDOC Week (named for the National Aboriginal and Islander Day of Observance, now celebrated yearly in Australia). His precise mannerisms were tempered by bursts of humour. Pa had a deep appreciation of nature, including a love he shared with me of the fragrance of violets. During a visit to the family home, he sat by our record player, transfixed, listening to I know that my Redeemer liveth from Handel’s Messiah. In an awed tone of voice, he exclaimed to me, Isn’t that grand? Music nurtured his deep faith.

Nan (Eadith Brown)—Tailoress

Nan was a solid, good-humoured woman who rose above early challenges. In her teen years, she suffered typhoid fever. Her first fiancé was killed in the war. One can only imagine the effect such sorrow would have had, but she showed no hint of public grief. These experiences of illness and sadness speak of her inner strength.

Nan sang a song, Knees Up, Mother Brown, exhorting me in a fun way to exercise my knees’ flexibility on arm crutches. She was patient in teaching me to knit. My memories of Nan are frequently associated with food. Nan cooked luscious scones and home-made ice cream and orange jelly. Who could forget foraging for silver coins carefully hidden in her Christmas puddings? I proudly wear her gold wedding ring today—a sign for me of dedication to God and in loving memory of a woman whose heart was as big as the wide Australian outback.

Pop (Alfred Brown)—Refrigeration Engineer

Through the eyes of his grandchildren, sandy-haired Pop was normally a chirpy soul. His friendship with the younger generation was fun- loving.

Pop was skilled with his hands, which he used to create equipment for my disability. With designs from the Spastic Centre, he made a standing box and a stabilizer. These pieces of equipment enabled me to stand supported, knees straight, with the help of locked callipers or leg irons. The equipment encouraged correction of my usual S-shaped standing posture. When I was strapped upright into the stabilizer for a half hour each day, I played tennis with myself, hitting a ball against the wall.

The standing box enabled me to engage in activities while in a standing position. The metal callipers on my legs locked so that my naturally bent knees were forced straight, making it biomechanically easier to remain upright.

Pop also made wooden skis, which were strapped to my ankles. They enlarged the surface area by which my feet touched the floor. I slid along like a cross-country skier without poles. It was good being able to walk unassisted this way for a short while.

Nan and Pop made a cheerful partnership. When Nan died, Pop was devastated. He did not want community or residential aged care. It was through Mum’s practical support that his life was extended in years and quality. Mum’s balance of caring responsibilities for her dad and her own family, though, involved careful negotiation. Such juggling was temporarily costly to her health. Her experience heightened my awareness of the difficulties middle-aged carers face in navigating conflicting expectations.

Pop enjoyed reminiscing. Hard financial times during the Depression were a recurring theme in his stories. Loss of jobs left him wondering where the next meal was coming from. He prayed earnestly to God. And a few days later, he would obtain employment—an answer to a heartfelt entreaty. These experiences led Pop to be frugal with money—a quality I have found invaluable for myself. I was heartbroken to say farewell to this genial storyteller.

Parents

Dad (Keith Coombes)—Minister of Religion

Born in India, Dad breathed the air of dedicated service that surrounded him. The Christian missionary culture espoused by his parents emphasized sacrifice of personal and family needs to the common good. Dad was sent to a boarding school in India at the age of five. He used to cry himself to sleep because he missed family life, craving the cuddles that parents give their children at bedtime. One wonders what scars of inferiority were seared on his heart because of this separation.

Years later after his marriage to Mum in Australia, Dad and she sailed back to India for a five-year stint of missionary service. After graduating from language school, Dad’s role in the town of Sholinghur and environs included preaching, pastoring, and educational and mission administration.

How do you describe my father? Words like humble, reliable, self-aware, gruff, at times tense, perfectionist, focused, driven, and punctual come to mind. He made good use of time, hating to waste minutes. Occasionally, though, this dignified man lapsed into unexpected humour.

He was sometimes sensitive to thoughtless pinpricks. With a wry grin, he remarked occasionally, You know that behind every silver lining there is a black cloud! He balanced his pessimism well by encouraging his kids, who sometimes worried about the future. One of his sayings was, It’ll work out. Look in the past—God provided for you then, and he will provide for you now and into the future.

For all his emotional complexity, I loved him deeply. I believe that his deep pastoral sensitivity to those who struggled was born of his own wrestling to conquer the demons that taunted him on occasions.

Dad’s nickname should have been Barnabas, an early Christian follower. The name means son of encouragement. Barnabas boosted the new Christian convert Saul (later Paul), who was viewed with suspicion because Christians feared for their lives at his persecuting hands. Yet Barnabas saw Saul’s potential and gave his support to Saul at a fragile time (see Acts 9:27). I appreciated my father’s encouragement of those trying to improve their skills.

On one occasion, Dad was preaching at a remote church. The organist was a young farmer. His musical prowess left a lot to be desired as he hit more wrong notes than right. I was struggling to keep a straight face as I listened. To Dad’s credit, he shook the organist’s hand afterward, exclaiming, Keep up the good work! When I questioned him later, Dad said, He’s doing his best, and he deserves a go.

Academically minded, Dad was a thoughtful preacher. To ensure the relevance of his sermons, he was an avid reader of newspapers. His pastoral visiting combined a deep understanding of human nature and an intelligent wisdom about how to live life faithfully. Dad completed a thesis on Aboriginal reconciliation. Later in life, he graduated as a master of arts in spirituality. He also wrote unpublished Australian parables.

No one could doubt that he was a loving father. He used to pen a kiss and hug on my hand when I came into his study as a little kid. After mowing the lawn, sweat pouring off his brow, he handed me a tiny yellow flower in his big fingers. This tender gesture made me appreciate beauty in small things.

His affection for me was also expressed in other ways. Dad created comical stories to send me to sleep as a child. When I was in high school, he patiently coached me in algebra, using pieces of fruit to illustrate a point. After operations in my forties, I had torrid dreams about my body being wrenched open. Dad placed his hand on my forehead tenderly one evening. He prayed for me, saying afterwards, You won’t have nightmares tonight. He was right. Sleep enveloped me.

When I was away from home, Dad corresponded. He drew cartoon- like stick figures with humorous captions relating to my life at the time. Alternatively, he clipped out newspaper articles in which he thought I would be interested.

Dad was also a dedicated son to his ageing parents. He visited weekly, often accompanied by us. Visits to all grandparents strengthened our family ties. These connections laid vital foundations for my future pastoral ministry with ageing people.

How do I summarise the significance of Dad’s life? His humble words say it all. At Dad’s final district church meeting before retirement, all outgoing ministers were asked to say a few words. While those who spoke before him waxed eloquent, Dad’s greeting was short and sweet: God does not call us to be successful but to be faithful. You could have heard a pin drop. His words were few and full.

Dad’s Death

Dad predicted he would not make old bones. When he died suddenly at home, I placed the sign of the cross gently on his forehead to send him on his way. His departure was a shock. Tears flowed. I was given a precious gift though. In a vivid dream, I saw Dad bending down, kissing me, sombrely yet tenderly saying Ta-ta. I woke up shivering, yet deeply comforted. Was his spirit passing by me on his journey to the next life? He seemed so close.

What was life like after his funeral? Fragile, still