Travelling the World With MS...: in a Wheelchair

By Linda McGowan

Since her diagnosis with Multiple Sclerosis in 1983, Linda McGowan has tenaciously pursued her dream of travelling the globe. From viewing the top of the world from a basket on the back of a porter at the Annapurna base camp in Nepal, to hob-knobbing with emperor penguins at the end of the world on the Falkland Islands, Linda describes in vivid det

• Language: English
• Publisher: There is a Way
• Release date: Oct 15, 2014
• ISBN: 9780995314313

Linda McGowan

After graduating with a Bachelor of Business (Accounting), Linda McGowan spent four years in corporate roles before moving into public practice. She worked in a small team reporting to the two partners as she honed her tax and small business accounting skills at a time when the use of computers in public practice was still novel. Opportunities for professional development seemed very limited until one of the partners suggested Linda join a CPA Discussion Group. This turned out to be fantastic advice and the peers she met in that group have provided support and friendship for decades. Linda has been running her own practice since 1992. This book distils the public practice fundamentals she believes every public accountant needs to know.

Book preview

Chapter 1

At the Beginning

How it Started

No pessimist ever discovered the secret of the stars, or sailed to an uncharted land, or opened a new doorway for the human spirit.

Helen Keller

Vulnerability accompanies me with every step and every action throughout life. Sometimes, my 1983 diagnosis of Multiple Sclerosis fills me with discouragement; however, it is not insurmountable.

I am determined not to be a woman who, upon nearing the autumn of life, declares in a state of boiling panic on my eightieth birthday, Oh dear! It is almost over. I now wish that I had picked more daisies and danced more dances and worn purple more often. As I am well on the downhill journey, more commonly referred to as the second half of life, I try to live each day as if it is my last. Live like there is no tomorrow and love extravagantly.

When I moved into my apartment on the Fraser River, I promised myself that I would always have flowers in some form or another. To this day, I have maintained that commitment to myself—fresh flowers, hanging baskets in the spring and summer; Christmas cacti blooming in December; flowering potted plants; colourful dried flowers to brighten the grey days of Vancouver winter rain. I have lots of everyday apparel but I make a habit of including some fun-to-wear clothing in my wardrobe. I will continue to dance more dances, pick more daisies, and wear purple on a daily basis for as long as my energy and health allow.

I once had a friend say to me, Nobody cares if you are not an expert ballroom dancer. Just get up and dance anyway! Just go for it. As I go for it, I smile, for what you think of me is none of my business.

I can hear your response already. There is not enough time in every day, or enough energy in my body’s system to always be doing something. How true! Living every day as if it is my last may be as complicated as travelling to the other side of the world to trek in the Himalayas; or, it may be as simple as spending a Saturday evening at home with a good book and peaceful music seeping into the depths of my soul. I may be thinking, reflecting, pondering, considering, planning, remembering. It is all good.

My growing years were tumultuous. My father's employment carried us across Canada from city to city, from province to province, from coast to coast. What an education! My brother and I, in our growing years, did not appreciate what we were gaining from the deluge of life experience. We now look upon things differently.

My mother was mostly unhappy at being far away from her family. She would leave to visit her family for two weeks and return three months later. My father was a self-managed alcoholic. He kept his drinking close to home. At the time of his death in 2008, to all of our benefits, he had been sober for thirty-eight years. I attended nine schools in twelve years and high school in a different province every year. I am always envious of friends who still maintain contact with childhood acquaintances and school chums. I don't know anyone from my elementary or high school years. Out of necessity, I was very much a loner. In order to survive continuous and constant change, I learned incredible independence.

Today, that independence is my biggest advantage. It is also my biggest disadvantage. For many years, I believed that if I couldn't do it alone, I was not going to do it. If I worked hard enough and long enough at anything, I would accomplish my goals. I am now older and wiser. I realize that no matter how hard I choose to work towards a desired goal, there are some things I will never be able to achieve.

I will never again walk a mile.

I both credit and blame my father for my tendency to be a workaholic, an unshakeable work ethic, and my implausible desire to explore each opportunity that presents itself. My dad had a stable, somewhat stern, philosophy of life: There was only one way to do things—the right way. He told me that if it is not hard work, it is probably not worth doing. His words echo in my ears as I tackle each challenge, round each corner, and surge through life.

During my early adult life, running had become a part of my routine. For many years, fifteen to be exact, I ran three or four miles (six kilometres in today's terms), three or four times a week. I came to the believable conclusion that my complex female body system, made up of physical, psychological, social, and spiritual components, could never run any greater distance. The first three miles were always agonizingly painful, unbelievably slow. I reviewed over and over the nagging question, Why am I doing this? Thus the belief that I could never run any further became embedded in my mind and body.

One Saturday morning the spring sunshine, tiny budding leaves on the trees, flowers in the process of emerging from their winter hibernation to unfurl bright petals, and the smell of newly cut grass, motivated me. With encouragement from my husband David, I headed for Burnaby Lake to attempt the bark mulch trail around the sparkling water's edge. It was 8 miles from my home to my home once more. It was to be a revealing journey.

Pussy willows were peeking their fuzzy heads from dark, rough bark cocoons. Water lilies were opening their yellow arms to greet the sunshine. Frogs were ribbiting in delight, gripping the edge of pale green lily pads with their webbed feet. Ducklings skittered across the water's surface, frolicking with their siblings, much to the chagrin of their moms who definitely had a more serious purpose in mind. Like most parents, the mother ducks were aiming to teach organization, discipline, safety, and consideration for fellow ducks. On this beautiful spring day, the young ducks wanted no part of it. My energy system entered a new learning cycle. As my feet began to move rhythmically along the shoreline, the rising level of endorphins in my brain led to an escalating state of euphoria that let me carry my body with ease. That run around the lake shook my previous belief that I could never run more than three or four miles. On a sunny day in early February, euphoria carried me eight miles without a hitch.

I could do it! I would do it! I began my training twelve weeks before the first Sunday in May, the day of the 1983 Vancouver Marathon. Between working full-time, attending night school to put the letters MBA after my name; chauffeuring my two boys to competitive swimming practices, soccer games, and school events, walking the dog—not to mention the housework, gardening, cooking, and laundry—I managed to squeeze in a daily run.

Evening fitness classes that emphasized stretching, flexibility, and concentration on my goal, changed my running schedule from fourteen miles a week to fifty miles weekly and more. My mind and body slipped into a rhythm. It became as simple as blinking my eyes. I was going to run the marathon and I was going to do it successfully. In the 1970s and early 1980s, you had to cross the finish line in four hours or less if your efforts were to be recorded as a completed marathon. More importantly, four hours and two seconds would mean no t-shirt! Who in their right mind would run 26.2 miles and not get a t-shirt? Not me! For those of you who only know distance in the metric system, 26.2 miles is 42 kilometres). Once a week I incorporated a long run starting with five miles and building to a 20-mile run two weeks before the marathon. If I could run 20, I would run 26.2.

I crossed the finish line in 3 hours and 23 minutes.

A very few months later, I sensed some mild numbness in my right forearm. Could it be ulna nerve palsy from leaning on my elbow late into the morning hours while working, studying, pondering very select, specific words that would lead to a high-quality paper that was due in two weeks? My doctor thought so. It never occurred to me that it was anything more. Over the next several months, I developed one other symptom: Lhermitte’s sign. That is, when I flexed my neck, an electric shock travelled down my spine. On my first visit to a neurologist many months later, I described these two annoyances to him. Without even examining me, he put pen to paper and drew a sketch of the spinal cord to show me demyelization of some of the nerves. I was a Home Care nurse working in community health. I had worked for many years with individuals with multiple sclerosis in varying stages of disability. I easily identified the reason for his artwork. It was MS—Multiple Sclerosis!

That's what you have, he said.

Ninety seconds had passed from entering the doctor’s office to diagnosis. I stared at him in amazement and shock. I left the office, walked blindly to my car and made my way home. I did not notice the sun that warmed my shoulders. On this day, the thrill of driving my white on white, special edition convertible Volkswagen Rabbit was lost on me. How could this be? It could not be! I had run a marathon less than six months ago. I was still running. I had clicked off five miles before waking my sons, Patrick and Timothy, at 7:00 a.m. this very morning. I had done a full day's work, ten hours, without stopping for a coffee break or lunch to ensure that I would finish in time to make my way through snail-paced traffic to a 5:30 p.m. doctor's appointment. Before reaching the doctor's office, I had slipped into a produce store to purchase a variety of fruit and vegetables so I could throw together one of those anything goes salads when I reached home. The MS diagnosis could not be.

But it was.

Words from My Past

Embrace change. True success can be defined by your ability to adapt to changing circumstances.

Connie Sky

In 1966, I graduated from high school with my senior matriculation. The movement from province to province in my high school years gave me the full benefit of completing the equivalent of a first university year at the age of seventeen. There it was in 1966 in Winnipeg, Manitoba, in black-and-white, for all to see, page 15 of the 1966 Westwood Collegiate yearbook: Linda Carter: Ambition: To travel. Probable destination: Paddling around the world in a canoe.

Maybe, way back then, at the age of seventeen, I had a premonition. I wanted to see the world, feel the world, experience the world as we know it and as we don't know it; to sense the rush of the new and different. I wanted to see the sun rise and set over the horizon in the northern hemisphere, southern hemisphere, the Far East and the mid-West. Well I am not paddling a canoe but there is a reasonable comparison since the same shoulder and bicep muscles that I used to paddle a canoe in my younger years now propel a wheelchair.

By the late 1980s, I was beginning to feel buried alive by overwhelming circumstances —marital separation, financial burdens, the happiness of my children, work, school, disability. Everything was coming all at once. Was I driving the wrong way on a one-way street?

Walking and balance were becoming more difficult. The time was coming when walking might be a part of my past life. I lived alone in a basement suite. On one of Vancouver's rainy winter weekends, I stayed at home, not answering the telephone, not turning on a radio or television. I spent my time sipping hot tea and thinking. By ten o'clock Sunday evening, I had come to terms with the fact that I only had two choices. One was to sit at home, moan, groan, and complain that life was not fair. The second option was to take the skills and strengths that I had and do the best that I could with them.

I chose the latter.

From childhood, I had dreamed of walking on the Great Wall of China. On Monday morning, I made a telephone call to book a round trip airline ticket to Beijing, China. By Friday of that same week, I had purchased my first wheelchair. And so it began. Feel the fear and do it anyway. Susan Jeffers said that. Not such a bad philosophy as long as you have calculated the risks versus the benefits, taken the reasonable precautions, made level-headed preparations, and become excited by the adrenaline rush.

What would happen when I ventured forth? Flexibility, innovation, a tendency to craziness—and some intrinsic fortitude—emerged as the essential ingredients I needed. Accessibility, as we know it in Canada and the United States, is defined differently, if at all, in many other parts of the world. Now when I plan a trip, many people will comment innocently, It must be accessible if you are going there. In many cases, the places I visit are not even remotely manageable in the ordinary sense of accessible.

Accessibility is directly related to attitude. At one point in my travels, at the top of a Himalayan mountain, the CEO of a disability foundation in the US asked me, Where are you finding the accessibility here in Bhutan?

I answered him quickly and confidently, I am not finding it, I am creating it. When it is not obvious, and I do require some level of user-friendliness, I must find a way to create that needed ease of access! By doing so, it spreads understanding to others.

I have always believed that those with a disability have a responsibility to educate themselves, and communities everywhere. I cannot just sit back and wait for it to happen. I have to make it happen.

I now invite you to share with me the incredible experiences that I have encountered both near and far. You will not agree, nor do I always agree, with some of the practices that I have witnessed. In fact, it is not ours to judge. It is my goal to be fully present in different cultures and observe diverse ways of life, accepting people for who they are. Some moments will be exciting, others frightening, many frustrating, overwhelming, rewarding, tiring, or exhilarating. As you leaf through the pages that describe travels and adventures, some of you will be excited to discover that many things that seem totally impossible can actually come to pass. Others will look at my escapades with a jaded eye, thinking, She has to be crazy—there is no way I would even attempt many of those things. If I can encourage or motivate even one person—able-bodied or with a disability—to venture forth to explore our wonderful universe, I will have accomplished my goal.

The First of Many

There are no short cuts to any place worth going.

Beverly Sills

It had to start somewhere and it did in 1989!

Upon arriving at the Vancouver airport, I checked my luggage including the new blue Quickie 3 wheelchair. I boarded the airplane trying not to think about the insanity of my decision to travel alone to the other side of the world. I did not realize at the time that my future would hold many, many hours of air travel. Anticipation and excitement filled every cell of my body on that cool drizzly March morning. Even today, before I embark on a trip, people will ask, Are you excited? My standard answer is, No, not yet. But when I get on that plane, an electrical spark will fill my entire being with expectancy and eagerness.

As the aerodynamics lifted the big bird off the runway, a deep thrill penetrated my gut. I have spent many hours in flight watching cloud formations, sipping red wine, reading, dozing, snacking, chatting with seatmates or quietly withdrawing into myself. It is all good.

When I first disembarked at the Beijing airport, I noticed flimsy wobbling walls made of thin plywood, poor lighting, no washrooms, no snack bar, no opportunity to purchase bottled water, no money exchange, and the entrances and exits were guarded by uniformed officials holding machine guns. There was a large cordoned-off area in the middle of the floor that contained bags, bundles, suitcases, cardboard boxes and one shiny, new, royal blue wheelchair. Line-ups began. I was directed to present a passport, display an immigration landing card, identify where I would be staying while in Beijing, and point out my luggage. With a different coloured stamp of approval on the back of my hand from the sentry at the head of each line, I was finally cleared to head for the bus.

The hotel was a three-storey concrete building located at the end of an unpaved roadway. In the pleasant and traditionally decorated lobby, all arriving guests were treated to a cup of tea while room keys were sorted out and assigned. It is going to be fine, I kept repeating to myself. That little pocket of moxie buried in the base of my core would have to emerge. It was one thing to be a woman travelling alone. It was quite another to be a woman in a wheelchair travelling alone.

In the late 1980s, Chinese culture did not embrace independence in women. When visiting in foreign lands, knowledge of the local culture is one of the greatest advantages you can have. It will reduce or eliminate surprises. The reference section of the library at home had provided information about this wonderful land, so I was aware that it was not the norm for people with disabilities to be visible and active in public. It was also uncommon for women to be out on their own in the community. These abnormalities paled in comparison to the differences created by my Caucasian appearance—pale skin and long hair that was not the usual black in colour. My clothing was different, not the long white baggy pants and shirts worn by the locals—although, out of consideration for the accepted dress code, I avoided shorts and tank tops.

In 1989, a communist government ruled China. Beijing streets were narrow, uneven and rough. Few were paved. Walkers were vigilant to avoid stones and potholes. For me, on wheels, some of these obstacles were insurmountable. Local people, mostly grammas and grandpas, readily came to my aid. There were three hundred and fifty privately-owned vehicles in the city, a few trucks delivering large goods, some army vehicles such as trucks and tanks. The roads were crowded with people and millions and millions of bicycles. One could see a mother, father; a child, on a single bicycle pulling a trailer behind piled with food or building materials. In the early morning, I would often wheel to the end of the road to expand my knowledge and sense of the community structure. I was able to get a feel for family life where hard-working people rose before night was over, completed a series of Tai Chi exercises, packed up their child and necessary food, belongings, and tools for the day and headed to a worksite; not as a father or employee but as a family group. Each member would contribute in some manner to the earning of the day's wages that would feed and house the family for at least today. The elderly are respected and honoured. Their long years of work were unselfishly invested in their only child. Now the roles reverse. Young people honour, cherish, and care for the old.

Residences were in concrete apartment buildings, each suite with a small balcony and a window. The closeness of the verandas clearly demonstrated that the housing units were tiny. Laundry was strung over the railings to dry in the warm sun. There was not a blade of grass in sight. In the yards and in front of the buildings, the terrain was composed of dust, dry dirt, or food plants such as cabbage, spinach, and carrots. No arable land was wasted on decadence such as grass and flowers. If food could be grown in the tiniest of corners, it was.

The first Asian trip included a few essentials. One was to walk on the Great Wall of China. On Friday morning, I boarded a bus with my cane and unsteady gait, slipping thankfully into the front seat. The driver placed my chair underneath the bus in the luggage compartment. I found myself in the midst of a loud public discussion. I did not understand one word of Chinese nor did my fellow passengers comprehend one syllable of English. It became apparent that seats were pre-assigned. Out of necessity, I had occupied the seat closest to the front of the bus, causing the commotion. I had taken someone else's pre-purchased space. When 3 people noticed my cane and my inability to move easily, the public controversy was resolved. Amidst smiles, the nodding of many heads and pats on my knee, we headed off to the Great Wall.

Linda on the Great Wall of China

Why had I brought a chair to China? By alternating activity with rest, I could, using a cane, manage to walk short distances. I knew that if I had to walk any distance to get to the Wall, by the time I got to its base, I would not be able to fulfill my lifelong dream of experiencing this wonder of the world. I was definitely accurate in my guesstimate. The distance from the bus to the Great Wall was close to 3/4 mile. Some enthusiastically helpful students pushed me to the staircase that led to the pedestrian access where I secured the wheelchair with the bike lock that I had brought with me. I mounted the eight stairs by lifting my right leg with one hand on to the first step. My left leg followed suit. Grasping the handrail, I slowly ascended the stairs to my dream destination. With my cane in hand, I walked slowly, holding onto the side of the wall, for the entire length of the visitor pedestrian way. The thrill of accomplishment warmed me through and through. It was the first experience of many that would amaze me in years to come.

On Saturday morning, with patience and help from other passengers, I boarded a bus heading to Tiananmen Square. On that bright sunny morning, families—a mom, dad, and one child—flocked to the park areas of the square. The one-child policy in China makes that one offspring incredibly valuable. My bag was brimming with Canadian flag stickpins for the parents and brightly coloured animal and flower stickers for the children. After several tentative approaches, the parents realized that I was not a threat to their country or to their children. I found new friends and could exchange smiles with both parents and child. Many offered to share the family meal. Young children delighted in short rides on my lap in the wheelchair. The parents were thrilled with the Canadian flag pins, the children shrieked with joy at the funny animal stickers that I pulled from my bag. I wandered through the square for hours, unaware of the underlying current of political unrest. I chatted with university students who could communicate minimally in English and I accepted their generous invitation to an evening dinner at the University. Little did I realize that these students were, in fact, searching for information about the North American democratic government system!

When I arrived at the designated university address, I found the windows darkened by black curtains and the lighting inside was minimal. Silence dominated the room. Verbal exchanges were whispered. I was welcomed and treated royally. I shared the evening meal and chatted easily about life in Canada. At the end of the evening (there was a curfew at 8:30 p.m.) three young students accompanied me back to my hotel, ensuring my safe return from the university. One week later, the world was shocked by the massacre of students in Tiananmen Square. I had newly found friends. I was shattered to imagine that they may have been part of the Tiananmen massacre. In retrospect, I realize that I too could have been one of the victims!

In China, one day was the same as the rest in terms of shopping and commercial activities. One Sunday morning, a visit to a department store was in order. After a 20-minute bus ride, I found myself in the most congested market area one could imagine. Walking on two legs required finesse; moving through the crowd in a wheelchair was a feat of skill and determination.

In 1989, there were two currencies in China—friendship money and Chinese money. I could purchase goods from vendors who were permitted to accept only Chinese money and I could also shop in Friendship Stores. The Chinese people, on the other hand, were not permitted to enter or to purchase from Friendship Stores. I tucked away receipts representing both kinds of transactions.

At the entrance to the multipurpose department store, I connected with a thin, elderly, grey-haired, and bearded gentleman. His excitement was equal to mine. He was taking an English conversation course at the local seniors' community centre and was delighted to find someone with whom to practice his English speaking skills. I was grateful to find someone who could understand even a few words of my native tongue. Between the usual charades and one-word phrases, we managed to share a cup of tea, and find cloisonné enamel beads for me to take home. At the end of the day we embraced in farewell.

I visited the Imperial Palace, the King's Residence, the Forbidden City. Yes, there were stairs, narrow doorways, large cobblestones on the pathways, but the local people and other tourists gave of their time, energy, and encouragement. I saw as much and more than I could expect.

I ate at small restaurants offering real Chinese food, not chow mein, chop suey, and egg rolls, but stir-fried garlic stems and meat of questionable sources. I was not brave enough to try any of the meats. It could have been dog, snake, rat or anything.

Rice, the staple food for the native population, became my standard fare.

NO aisle chair available!

Hong Kong

I was going to shop until I dropped but I did not expect the expression to turn out to be literal.

On arrival at the hotel, I quickly emptied the bag that hung on the back of my chair to make space available for my anticipated purchases. I grabbed a tote bag and went back out onto the street to begin a marathon shopping spree. Chaos reigned. Vendors, traffic, hagglers, and tourists, combined to create a unique symphony of noise. There were people and things everywhere. So many items of all sorts to choose from! Somewhat confused by the overwhelming display of clothes, jewellery, electronics, and antiques, a system of organized priorities was clearly the only way to survive financially!

My sons had given me a list of all the cool things that teenagers think that they would like to have, but cannot afford to buy. Mom, we don't expect you to bring anything home but just in case the price is really good and you have time... The list included Vuarnet sunglasses, Sony Walkman speakers, scientific calculators, deep sea diving watches and any other electronic gadgets that were out of reach, price-wise in Canada, but perhaps within the budget here in Hong Kong.

The streets of Hong Kong offered a bewildering array of electronics stores where every technological gizmo was available along with cameras, jewellery, Gucci handbags, and all types of luxury items. I shopped from early morning to late in the afternoon. This was not a straightforward task of entering a store, selecting the desired product, paying the identified price, and leaving with the cherished merchandise in a paper sack. I visited many shops, chatted with many vendors, spoke with fellow travellers and local residents. It all helped to establish my comfort with quality of a product and awareness of reasonable cost. I compared prices. I moved along the street, surprised at the expansive array of products—colour, size, features and, of course, the variation in price. My limited knowledge of the electronic products that I was trying to buy for my sons did not help matters. However I did capitalize on the information sources around me. Over a cup of tea and a bowl of noodles, my mind raced, then rested. My decisions were finalized.

In the afternoon, I retraced my steps as best I could and, confident at last, made the purchases. I was proud of my selections and the bag on the back of my wheelchair was overflowing.

I eagerly began to wheel back towards the hotel. As I crossed the main street, an uphill grade of 45 degrees did not deter my enthusiasm—until the excessive weight in the bag on the back of my chair combined with the uphill incline, rocked my world. My chair tipped backwards (as my mother would have said, ass over teakettle) in the middle of the main street. I lay on my back with feet in the air like an overturned turtle with its legs waving. Many cars passed by, missing me by inches, not seeming to notice this unusual obstruction in the middle of the road. But there were many pedestrians and some drivers who quickly came to the rescue, righted the chair, lifted me back onto the seat, recovered my parcels, then ushered me safely to the side of the road and up to the entrance to my hotel. Was I injured? Physically, no! My pride took the major beating but it was all in fun and yes, it was worth it when mother world traveller returned to Vancouver with the coveted electronics.

Jumbo, the floating restaurant in the middle of the Hong Kong harbour, could only be reached by boat, a Chinese junk. This huge, multi-level restaurant appeared like a forested island in the middle of the sea. Many levels were planted with trees, plants, and even a natural aviary amongst the tropical plants. There were toucans, cranes, vultures, eagles, and tiny canaries, all housed in gilded cages. The decor included large Chinese lanterns, a musical background provided by a harpist and Chinese gong, with bells playing softly in the background. Large oblong and round tables hosted Lazy Susans where a startling variety of local Chinese dishes rotated clockwise in front of each diner. The intricate dishes included stir fried vegetables, garlic stems decorated with colourful flora, Peking duck, Moo Shu pork with hoi sin sauce, lychee nuts, almond blanc mange. Beverages flowed copiously—beer in quart bottles, sickly sweet lemon soda, and of course, Chinese tea. Our stomachs overly filled, we boarded the Chinese junk and headed back through the dark waters to the bustling streets of Hong Kong where commercialism continues on a 24-hour basis.

My father was a classy clotheshorse. He highly recommended that while in Hong Kong, I make an appointment to visit with his favourite tailor, Patrick Wong. In the morning, I wheeled up and down the streets until I located the address that was neatly printed on a small piece of paper in my pocketbook. Upon introducing myself as Mr. Carter’s daughter, I was treated like a piece of gold. The workers in the shop could not do enough for me. Bolts of cloth of every colour imaginable, in a multitude of textures, were ceremoniously presented to me. In a very short