WHEELCHAIR NOMAD

A Quadriplegic’s Account of a Five-Month World Trip

Chapter 1 Heading Away

Introduction

I was feeling mellow, knocking back a Bundaberg Rum and Cola with my friend Peter Barrett, a fellow amateur radio or ham operator. Peter is an ex-telstra employee, of thirty years, now studying robotics at Technical and Further Education (TAFE), in Perth, Western Australia, in the hope of getting a new career. He is partial to the odd drop of Bundy. He calls it euphemistically polar bears on air after Bundy’s famous Canadian white polar bear logo. An on-air conversation might go, jokingly, “VK6DN this is VK6PEC. How are you, Don? Had a bit of a battle with a polar bear last night. We went six bouts, and then the polar bear knocked me out. Polar bears are mighty creatures, and they always seem to defeat me. I think I’ll try to avoid them for a few days. VK6DN this is VK6PEC, Over to you.”

Casually Peter asked amidst our drink, “How’d you end up in a wheelchair, Don?” This is not a place I want to go very often, as the memories remain vivid and painful. These memories are best left forgotten since they are about trauma, a catastrophic change of one life style for another. I usually put people off when I’m asked. “Do they really want to know the answer?” I think. But I was relaxed. I had time on my hands, on a lovely autumn day in mid-March. It was a Sunday afternoon, under Perth’s famous wall-to-wall blue skies and warm sun. Perhaps a stroll down memory lane would do me no harm today.

“I was off on one of my trips in 1978, first to Melbourne, to spend Christmas with my girl friend Janet Munro and her parents.” I said. “As a high school curriculum coordinator at Hamilton High School, I had a eight week summer vacation and I had intended to fly from Melbourne to New Guinea to hike the old World War II Dakota Trail through the mountains, amidst tropical rains, mud and jungle. I wanted to view the old war remains from the ferocious battles the Australians fought against the Japanese there and meet New Guinea’s tribesmen. I’d organised a lift to Adelaide through Travel Mates, a Perth firm that you’d probably know, Peter.”

I continued, “They’d got me a lift in an old style blue Volvo with Tom, a mid-aged owner and I was accompanied as well by a young Russian migrant. It looked to me at the time like a safe ride, good car, and mature driver. ‘Got to reach Adelaide tomorrow,’ Tom told me. ‘We’ll drive all night and share the driving.’ We left midday 19^th December 1978, and we were reaching Eucla near the South Australian border around 3.00 AM at night. The Russian refugee was at the wheel; I sat in the left front passenger seat, seat belt and shoulder harness secure as always, and Tom, the owner of the car, slept across the back seat. I felt the car swerve, run off the road. I screamed, ‘wake up,’ at the driver wondering, ‘What a dickhead! How could he lose control on a dead flat straight road surrounded by flat level sand.’ Then the car rolled. I woke still in the seat, traumized, in shock, unable to move. I don’t remember much more, except I was flown to Kalgoorlie, then Perth by the Flying Doctor service.”

I looked at Peter curiously. He was visibly trembling, his face had blanched like a ghost’s, and he seemed to be gasping and having trouble with his breathing. I had seen one of Peter’s extreme reactions at the Saigon Vietnamese Restaurant in Perth. This was a weekly Wednesday luncheon stop for me on my day off. Peter had dropped by and had chewed and eaten four red-hot chillies thinking they were red capuchins. This response today wasn’t like the luncheon paroxysm in the least. Then Peter had turned bright red, began to choke and rushed away for water. “What was causing this visible and unusual body language?” I wondered.

“I was in the car behind you on the highway, Dec 20^th, 1978, a blue Volvo, 4.00 am with the sun just beginning to show in the distant horizon,” he gasped. “I’d had gotten a little pissed in the evening before and was resting in the back seat. The driver Don who lives near here shouted excitedly in the dark as our car’s headlights threw a yellow glow ahead. ‘Jesus, that car ahead, its taillights are gone, disappeared. There are its headlights now. There are the taillights again, it’s rolling or spinning out of control, I think. Shit! Hang on, I’m braking.’ We stopped. The Volvo was upright, in a huge cloud of dust, off the road in the sandy desert. All the windows were smashed, but the engine was still running. It looked to me like it had rolled four or five times. I turned the key and killed the engine. Christmas presents were scattered along the road everywhere. Two men exited the car while you stayed seated in the passenger seat. They seemed fine and the driver was moaning, ‘Look at my car, will you. Ruined. Look, There are my Christmas presents all over the road. Shit.’ I asked you how you were since everyone seemed to have forgotten you. You said, ‘I can’t move at all.’ I thought, ‘this is a serious accident, this poor guy is in a bad way.’ Then lucidly to my amazement you said, ‘I smell petrol strongly. Please extinguish your cigarette or move away from the car. I can’t get out if this thing catches fire.’ We hung around for an hour, but the police arrived so we continued on to Adelaide. There wasn’t anything we could do. What a coincidence to meet you twenty-five years later. I have often wondered what had happened.”

We shared recollections and I told Peter a follow-up story. “I played an answer phone message four years ago. A voice said, ‘Are you the Don Pugh who was injured on the Nullarbor. I’m the ambulance driver who picked you up and drove you to Kalgoorlie. You were in bad shape and we were certain you would die on the way. I wondered what happened to you. I retired today, was reading my old logbooks and I thought of you. I was pleased to see your name in the phone book and I’m glad you seem to be ok.’” “I’ve never contacted the driver, Peter,” I said, “as he left no return number but I still wish I could thank him for his service.”

I continued telling Peter about that long ago accident and its devastating effects. “I remember being awake on a stretcher in that mercy flight by flying ambulance from Kalgoorlie to Perth, Peter. I was in acute pain and everything hurt like hell. I was told that the tires on the ambulance carrying me to Perth were lowered to reduce jarring to my spine. I remember being introduced to Sir George Bedbrook, a world-renowned spinal surgeon and expert in the care of spinal injured patients. Would you believe it, Peter. He carried what looked like a Black and Decker drill and told me, ‘I’m going to drill two holes in your skull above your ears to place callipers to hold you rigidly in spinal traction. I won’t drill into your brain, don’t worry.’ I was terrified, Peter, as vibration shook my skull. He then set my neck, broken between the fifth and sixth cervical vertebrae. He reported to me clinically, “X-rays show two centimetres separation at the break. The spinal cord is totally severed. You will never walk again. You may well die in the next week. What a devastating message to hear, Peter!”

I sipped my drink and continued talking. “I awoke in acute care, was transferred to acute care at the Royal Perth Rehabilitation Centre across town. By then my parents had arrived, flying from Toronto to Perth to be with me for the next six months. They stayed with my girl friend, Janet. Are you sure you want to hear more?” Peter indicated he did by pouring another drink for both of us.

I kept talking, some compulsion keeping me going. Perhaps I’d had too many Polar Bears. “In hospital, Peter, a cable was attached to my calliper to place me in traction. The calliper was attached to heavy weights; a team of orderlies turned me from side, to back, to far side every two hours. I breathed pure oxygen for a week, which dried my mouth to parchment. The pain was horrendous; Peter, and I counted the minutes to my next morphine injection. After a week I went on pethidine, a less addictive, but less effective painkiller and I really experienced intense, continuous pain.” “How’d things go then?” Peter asked and I continued.

“Peter, I felt a sense of triumph to survive two weeks of intensive care and to be shifted to a less intensive room. A friend, Bob Wynn, a paraplegic, fixed me up a two meter radio, and a photo of him and I with the radio featured on the front page of the West Australian newspaper. There are a series of stages in the progression of treatment of spinal patients, Peter, and I won’t bore you with them, except achieving each one felt like a milestone. There was the removal of callipers, use of a halo brace, sitting upright in bed, getting into a wheelchair, then after three months, removal of all braces. God, that was wonderful. It itched continuously.”

“Did you have other operations,” Peter asked. “Yes, other operations were needed too, Peter. Because of my spinal paralysis I couldn’t pee. Without regular catherization, I would die. Permanent internal catheters, however, also cause kidney infections and death. Medical research had found that the bladder is like a balloon. Weakening the bladder sphincter muscles allows the bladder to be trained over a few months to respond to bladder tapping, and to contract and empty. This operation to weaken the sphincter muscle is called an sphincterotomy, and my first one failed. A second operation was successful and is functional still although I was confined to bed for two weeks. I now wear an external catheter and bag to reduce the risk of infection and tap or hit my bladder to empty it every few hours. You’ve probably seen me doing it, Peter. My leg bag holds 1250 millilitres of urine before it needs emptying. I must take prophylactic tablets twice daily to prevent infections. That’s how I pee now.”

“What happened then,” Peter enquired. I continued, “I graduated from the hospital to the Quadriplegic Centre next door after eight months of hospitalisation in September 1979. A clue to the severity of my condition is indicated by a visit from Centrelink, then the Department of Social Security. They visited me in hospital, immediately declared me as ninety-five percent physically disabled and put me on a disability pension without me even applying. I guess it was all organised by the hospital social worker.” “That’s a change,” Peter said. “Those bastards usually don’t give out a penny.” I added, “I’m proud to say that I’ve only spent four months on a disability pension, my entire life, and I returned to paid employment in February 1980. However, the assessment of ninety-five percent physical disability is correct. As I told my solicitor Grant White who was preparing for a court case, ‘Go for it, big-time, Grant. I have no motor control of my hands and my arms have no strength because of paralysis of my triceps muscles over the elbows. I’m paralysed and have no feeling below my shoulders. I can’t lift myself to dress or do up buttons. I lack control of my bladder and bowel. I can’t lift my body weight so I can’t transfer into a car or bed without a board to carry my weight. Because of lack of sensation in my hands and most of my body I must be careful around anything hot, including a hot cup of coffee. Poor circulation causes me to feel hot or cold weather quickly. I’m subject to pressure sores, because I cannot lift to relieve pressure, so I must use a special air filled cushion, called a roho. I also have no body muscles to provide balance and can easily be thrown forward by a sudden stop. My bones are brittle because they no longer carry weight.’” Feeling uncomfortable with this tragic litany of woes, I summarised, “To put it simply, Peter, I totalled myself.”

It was time to head home, a one-hour drive through Perth’s Sunday traffic. I said goodbye to Peter and transferred smoothly and competently, unassisted, into my car, an operation I do four to six times daily. Yet as I drove home, I reflected back on the rest of my story. The overall list of negatives caused by my condition does read much more extensively than this list and filled a thirty-page report that I had prepared for my solicitor. I have no desire to review it. It included a life threatening condition called autonomic reflexia. A number of my quadriplegic friends have since passed away from lung and kidney infections and other ailments. A quadriplegic lifespan is noticeably shorter than the human average.

My policy has been to minimise the disadvantages of my condition and to focus totally on the positives that still exist. There are still very many things I could do, or could learn to do by using aides. Sure, I can no longer ride a bike, surf, and SCUBA dive or fly a plane but neither can ninety-five percent of the world’s population. I can still keep myself busy twenty-four hours a day with things I enjoy. For instance, I repassed my driver’s license with hand controls after four lessons, although I needed help in and out of the car and required a shoulder harness to hold me rigid. With this skill, I was able to drive to work daily. Friends, particularly neighbours, Gary Davidson and Michael Hand accompanied me, so that after two years I could transfer independently into a car. I taught my paralysed hand to write, although I now wedge a pen between rigid fingers. I learned to type with one finger, sadly at ten words a minute compared to my former one hundred and twenty words a minute. I retained my old intellectual skills of research, analysis, synthesis, evaluation and report writing. I was able to resume my old job as curriculum coordinator, in a more restricted capacity, beginning full-time in an unpaid volunteer capacity the day I was released from hospital in September 1979.

I moved from this job at Hamilton Senior High School to a district level Education Department job. At the interview I fell on the floor accidentally but was hired anyway. What an embarrassment. The position involved me in supporting schools and teachers from 1983 to 1987 in assessing their needs and helping them in writing submissions for grants of money under the Disadvantaged Schools Programme. Resigning in 1988, to travel around North America for a year, I returned to full time university study in 1989. I believed the best placement for someone in my condition was as a school psychologist. This position required three years of psychology with a fourth to obtain a Masters of Psychology degree under an accelerated programme that I negotiated. In 1992 I graduated with my third Master’s degree, a Master in Psychology, and accepted a full time placement in Peel District schools, a seventy-minute drive from home, as a registered school psychologist. I have now completed eleven years of employment in this position.

Much of my work in the last ten years of employment has been in counselling secondary school students. These students are frequently referred for depression, anxiety, and anger issues, although the symptoms prompting a referral are usually students crying in class, swearing angrily at a teacher or refusing to come to school. Besides the standard behavioural approach, used by all psychologists, the counselling techniques I have found very useful are called Rational Emotional Behavioural Therapy and Cognitive Behavioural Therapy. These are confusing names for a simplistic procedure. Both approaches have been clinically proven to be equally effective as medication in helping people overcome depression. However, therapy is more effective in preventing long-term relapse back into depression.

Depression is often caused by a traumatic event in someone’s life, the divorce of parents, rape, break-up of a relationship, chronic teasing, even failure at school. Disabled people, particularly those who have experienced the trauma of a spinal injury are particularly subject to becoming depressed. By undertaking and achieving small daily challenges and by practising the principles of cognitive therapy on a daily basis, anyone may learn to feel confident in themselves and optimistic in outlook. The cognitive therapy process is summarised by the mnemonic ABCDE.

As I tell my clients, “A is an adversity, any bad event that occurs to you. It is the activating issue that causes you to think and problem solve. B represents your beliefs or thoughts. You think to yourself in your head about any event, just like talking aloud. We call those thoughts self-talk. C represents the Consequences. These include how you feel, what you say or do, and what follows then. We feel angry, sad or happy, not because of an adversity, but how we think about or interpret the event.

An example is Max who gets a short haircut, and thinks ‘kids will tease me at school. I hate it.’ Max feels angry, anxious and sad. Max then thinks, ‘hey, this haircut is like my hero Emnem. It’s really cool. Girls will love it.’ Max now feels ok about the haircut. Our thoughts control our feelings, not external events. D represents disputation. We argue or challenge negative, irrational or pessimistic thoughts by gathering information that they’re false, and we interpret our data or evidence positively to reach new optimistic beliefs.

Optimistic beliefs see adversities as only temporary events that are specific in nature, and optimists share the blame for these events with others rather than totally blaming themselves and feeling guilty. In contrast, optimists see good events as permanent or ongoing, pervasive or general and they credit themselves for these events. The final step in cognitive therapy is E for Effects or Energization. Our new optimistic beliefs supplanting pessimistic thoughts should reduce our anger, anxiety or sadness and make us feel better.

For this therapy to work, we need to practice it daily, whenever aroused emotions signal that we are thinking unhelpful thoughts. Therapists recommend daily completion of written thought records as a way to develop this expertise.

Writing a diary of my travels seeks to fulfil four goals for me. Firstly, in the style of Eric Newby and other skilled travel writers, I want only to entertain and share my adventures and enjoyment of travel. The Internet which allows us to self-publish text and photographs to a world wide audience gives me more incentive, than I had in other trips.

Secondly, I want to acquaint able-bodied and other spinal injured readers with the challenges and successes that I face as a high level quadriplegic. Hopefully, other disabled people may be motivated to travel themselves, share vivaciously in the joys of travel or may pick up useful travel tips.

Thirdly, I am a registered psychologist and have worked now for ten years in high and primary schools counselling kids with behavioural, emotional, social and learning issues. Many students, particularly from disadvantaged, one-parent families, suffer from issues of anger, depression and anxiety. I have found cognitive behavioural therapy to be the best way to help these children. I believe that if one ‘talks the talk, one must walk the walk,’ or practice what one preaches. Since cognitive behavioural therapy uses thought records on a daily basis, this account has allowed me daily practice for myself of my preferred counselling method. Hopefully those reading this may become more aware of this therapy, and gain a sense of how it works and grow in confidence that it does work effectively.

Fourthly, this account is an autobiography, since I am revisiting old friends and places integral to my life and writing allows me the pleasure of reflection for a fifty-six year old man. Quadriplegics have foreshortened life spans and some good quadriplegic friends have already died younger than me. Each year I find it more difficult to travel. I cannot travel alone and finding companions is a challenge. Lily, my wife, has indicated that she no longer is up to tolerating long trips with me because of an unrelenting workload. Retirement, staring at me like a gun barrel, will end my readily available financial resources. This may be my last trip, though as a confirmed optimist, I don’t really believe it. As I travel through geography, in this account of my trip, I also travel through time, writing about events from early in my past that spring into my mind and sharing accounts of supportive friends whom have influenced my life. It is hoped that my friends’ personal accounts, many of whom are also in their fifties and sixties, will also prove inspirational.

End Chapter 1