Princess Alexandra Hospital Spinal Unit
It is during our darkest moments that we must focus to see the light. – Aristotle
My parents accompanied me on the flight from Cairns to Brisbane and were by my bedside for the first few weeks of my stay in the Princess Alexandra Hospital Spinal Unit. In those dark days my parents took control of everything and were constantly by my side. Jenny came to Brisbane a week after my accident, but could only stay for a few days, she had to return home to sort out our affairs before she could return to Brisbane for the extended period of my rehabilitation.
December is usually a busy month for the Spinal Unit, with the coming of summer bringing with it new injuries from diving related accidents. The Princess Alexandra Hospital Spinal Unit was certainly kept busy during the month of December 1991. To some extent it eased my pain and made me feel less alone to see others suffering at the same time. A young American by the name of Mike Knepler had the misfortune of suffering an injury like mine and was admitted to the spinal unit the same day that I was. His injury was almost identical to mine and so was his resulting level of disability. In those first few days after the accident seeing someone else as terrified and frightened as I was certainly seemed to help. I guess it is like the experience prisoners of war go through when they have to endure great suffering. Certainly, a fair degree of camaraderie developed between the young American and myself. Through the tears and the misery, we managed to gather strength from each other.
For the first few weeks of rehab, patients remain in the ‘acute care’. ward. During that time, I had many cards and letters from well-wishers, as well as many visitors. It was a few days after my accident when my sister Joann was called to the nurse’s station to answer a phone call. “Look, who is this really?” I heard her say in an angry voice. Then her tone changed, and she walked over to my bed. ” Robert,” she said, “Bob Hawke’s on the phone and he wants to tell you his thoughts are with you, and to feel free to call him when you are feeling up to it.” Things like that picked up my spirits a lot, but it was the letters I received from people back home that lifted my spirits the most, some were from people who I had not heard from since school, some from people I hardly knew, and some were from friends of dad. There were a couple of letters from people in wheelchairs, telling me not to give up, and that life goes on. These letters gave me a lot of encouragement. To this day I regret not attempting to reply to all the people who sent letters and cards, but maybe they will read this story, if they do I would like to give them my sincere thanks.
During my time in acute care I was permanently in a horizontal position. The doctors and the physio had explained to me what muscles I had lost and which muscles I retained the use of. Gone were all my chest muscles and everything below. I retained my biceps and wrist extension, but gone were my triceps and wrist flexion. For the life of me I could not see how I could push a wheelchair without chest or triceps muscles, but others seemed to manage it. The fact I accepted my injury early on, meant that the grief associated with my loss hit me all at once. Accepting the fact you will never walk again and coming to terms with it, are two very different things.
No Miracle Recovery
The reality of permanent disability does not satisfy societies need for inspirational stories of the triumph of the human spirit over physical adversity, nor does it satisfy the need of the tabloid media for sensational stories of a tragic victim who overcomes the odds. How often have we heard the tale of the brave individual who refuses to listen when the doctors tell him he will never walk again, only to defy the odds with a hardy combination of blood, sweat and tears. So many stories and so much folk-law have been built on this story-line which has absolutely no basis in fact. In almost every case of spinal cord injury, no matter how serious, a patient is never told he will never walk again. This is done for two reasons, firstly doctors want to give people time to get over the initial shock and slowly come to terms which what has happened and secondly, to let the swelling around the spinal cord go down, just in case some of the cord remains intact, and capable of passing messages down to the rest of the body.
Much of the mythology surrounding spinal cord injury has occurred as a result of what are known as ‘incomplete injuries’. An incomplete injury occurs when the injury is not severe enough to completely block the passage of messages to the lower part of the body. Typically, individuals who suffer this type of injury either end up in a wheelchair with minimal movement in their lower limbs, or less frequently actually manage to walk again, but do so with great difficulty due to partial paralysis. There are very few complete recoveries.
To be rehabilitated you must come to terms with your disability. Some people never do! While in Princess Alexandra Hospital Spinal Unit I met several people who, over twelve months after their injury, still spent at least some time during the day trying to get paralysed limbs to move. As if by sheer will, they could overcome an injury which was permanent and for which there was no cure. The best way I have found to explain the nature of the relationship between one’s mind and one’s paralysed limbs is by using the metaphor of a light-switch and a light. Once the electrical wiring is severed, it does not matter how much you want the light to turn on, or how many times you hit the switch, nothing is going to happen (until one day science finds a cure).
The number of miracle stories I have heard over the last 30 years have been too numerous to mention. These stories place a considerable burden on people with disabilities. If it were true that people with spinal cord injuries could walk again through sheer will power, what implications does this have for people with permanent disabilities? Are these the people who simply quit with no guts and no glory? This is too much of a burden to place on the shoulders of people who already have too much to cope with. The only truth post injury is that people will do whatever they can, not whatever they want, and they leave hospital that way, whether its walking, crawling, or in a wheelchair!
Princess Alexandra Hospital Spinal Unit – Rehab
Prior to my accident whenever I thought of people in wheelchairs it was always of paraplegics, the idea of not having full use of your arms and hands had never occurred to me. The time I spent at the gym prior to my accident had given me a good understanding of the various muscles in your body and what functions they perform. So, when the doctor told me which muscles I had lost the use of, and which muscles I retained, I had a good understanding of what I would be able to do. I was paralysed from the chest down and had lost movement in my hands, and fifty percent of the movement in my arms. In my arms I still had control of my biceps but had lost the use of triceps.
My physiotherapist’s name was Richard. He was a tall athletic young man with dark hair and Tom Cruise good looks. I appreciated his frankness and helpful attitude, and he stole my mother and sister’s hearts straight away. “My name is Richard and I am going to be your physiotherapist” he said. “Nice to meet you, but all I want to know is how long until I get out of here.” I replied. ” That depends he said, with quadriplegics it can be six, nine or 12 months, depending on how you progress” Well I’m not afraid of hard work I said, I’ll be out of here in six months” He just smiled and continued manipulating my joints”
“I think we’ll get you up in a chair on Monday” he said. “Because you have been in bed for so long it’s going to take a lot out of you. Your body is not working the way it used to, and it will take you a while to get used to sitting up again. At the first go we will probably only sit you up for a few minutes as you will probably get very dizzy. It is only natural that it will take your body a while to get used to being in a vertical position again.” “Because your blood pressure will be lower now than it was before, you will probably become dizzy after a short while, and may experience some nausea.” he said. Anyhow we’ll see how you go on Monday.
I turned to dad who was sitting beside my bed and proclaimed confidently “This guy must think I’m a whimp, once I sit up there’s no way I will want to lie down in a hurry.” I’d spent the weekend anticipating getting a normal view of the world once again. I had been in the hospital for a month, yet I still didn’t know what the room looked like, although I could describe the ceiling in great detail. Richard arrived early Monday morning with a large stainless-steel wheelchair with a reclining back. “Right are you ready to get out of that bed.” he said. “Yeeha,” I replied. “I can’t wait”. Together with two male nurses Richard performed what was known as a three man lift. He took my legs while another nurse took my waist and the third grabbed me under the shoulders. They carefully transferred me to the wheelchair which was in a very reclined position. I can’t describe how wonderful it felt to get out of the bed.
“Right”, said Richard, “if you feel okay, then we put the back on that thing up so you can look a few of us in the eye.” “No worries mate, it will be a pleasure.” Richard placed a restraint around my chest to hold me to the back of the chair and then moved the chair up three notches to almost a vertical position. Initially I felt fantastic, I could see the room, as well as all the people I had been staring up at for the last month. “Hey, this sure beats looking up people’s noses,” I said with a smile. No sooner had I spoken and it appeared to start to snow as the room turned white, my head started to spin and all I could see was darkness. “Quick, put the back of the chair down again.” I could vaguely hear Richards voice in the background as I disappeared into unconsciousness. Before long, my head began to clear, and I could once again see the familiar sight of the ceiling of the ward. “What’s the matter tough guy, I thought you weren’t going to quit on me” Richard said with a smile. He added, “Don’t worry about it, it happens to everyone first time up. You’ll get used to it after a while, it will just take time.”
It did not take me long to accept the consequences of my accident and to understand the extent of my disability, but coming to terms with it emotionally was a lot more difficult, slowly seeing my muscular body wasting away was breaking my heart. It was only 2 months ago that I was proudly showing off my physique, and now I looked like a refugee from a prisoner of war camp.
I was distressed to find out that the standard period of hospitalisation for a quadriplegic at Princess Alexandra Hospital Spinal Unit was nine months. My rehabilitation at Princess Alexandra Hospital Spinal Unit seemed like a painfully slow process. My days were kept busy with physiotherapy in the mornings and occupational therapy in the afternoons.
Fortunately Jenny had arranged a meeting with two social workers from Australia Post and thanks to their excellent work and the compassion of other people at Australia Post Jenny received a temporary transfer to the South Brisbane Mail Centre which was only 5 minutes from Princess Alexandra Hospital Spinal Unit. this allowed her to visit and spend time with me every day.
My occupational therapist at Princess Alexandra Hospital Spinal Unit was a young lady by the name of Sue Lightbody. She was an attractive 21-year-old with long blonde hair. Sue was 5 years younger than me, but my relationship with her was similar to that a child starting school for the first time has with their teacher. When you lose your independence and need people to do everything for you, it’s natural to feel like a child again. Sue was probably the most important person involved in my rehabilitation. She taught me ways of getting things done and provided me with aids and utensils that enabled me to do everyday things like combing my hair and brushing my teeth.
OT’s like Sue at Princess Alexandra Hospital Spinal Unit come up with great solutions to difficult problems for people with disabilities. For example, how do you think someone with paralysed hands who can’t move their fingers would ever be able to feed themselves? Ring cutlery, that is how. A jeweler’s ring welded to a spoon or fork is a simple and practical solution. I cannot speak highly enough of the OTs who have assisted so many people to a better life.
Before too long it became apparent to Jenny and I that it would not be possible for me to return to our house at 70 Mt Peter Road. While it was ground level, I would not be able to access the toilet and bathroom and the carpet would have made it hard for me to push my wheelchair. We thought about making renovations, but the after calculating the amount they would cost we decided to build a new house, designed to make me as independent as possible.
Together with Sue Lightbody, Jenny and I worked on designing a house plan that would enable me to live as independently as possible. Jenny designed a house with an open floor plan and a large bedroom with en-suite. Sue came up with many useful ideas such as taps, champagne switches, open under kitchen design.
Princess Alexandra Hospital Spinal Unit – Wedding
Since Jenny’s arrival in Brisbane the topic of marriage had come up several times. At first, I was still keen but as time passed I came to realise the level of my disability, and its permanent nature. By the middle of January, I had convinced myself that there was no longer any future in a relationship. God knows I still loved Jenny, but I tried to justify my position by convincing myself that I could no longer make her happy, and she would be better off without me. It all came to a head one Saturday morning in the middle of January.
Jenny walked in carrying a bowl of fruit and the morning newspaper. “Good morning, and how’s my fiancé today?” she said.
“How do you bloody think I am, I can’t walk, I can hardly move, I can’t even scratch my fucking nose”.
“What’s the matter Rob, has one of the nurses been giving you a tough time?”
“It’s not that, I’m just sick and tired of pretending everything is going to be alight, I’m finished and that is all there is to it. I’m not good for anything and I never will be. I don’t know why you even bother visiting me, you’re just wasting your time.”
“But I love you Rob, everything is going to be okay, after a while you will be pushing around in that wheelchair and no one will be able to keep up with you”, Jenny said.
“Look the guy you knew isn’t around anymore, he disappeared on the 1st of December. That was the Robert you knew and he’s not coming back. It’s about time you got used to that.” I said.
“You’ll be alright Rob, you’re just in a bad mood.” Jenny replied.
“But that is the whole point I’II never be all alright again. And the sooner you realise that the better we’ll both be.” I said. “What are you really trying to say Robert?” Jenny replied.
“What I’m trying to say is you’re wasting your time coming in here every day I’m not going to be alight and we’re not going to be alright, this is not some fairy-tale that is going to end with both living happily ever after you know. The sooner you realise that and get on with your own life the better for both of us.” ‘
Jenny’s eyes filled with tears. “Are you saying you don’t want me around anymore?” she replied.
“I guess that is what I’m saying but don’t make me out to be such a prick, all I want is for you to be happy, and the sooner you realise that I’m finished and go out and find yourself a real man the happier I’II be.”
Tears began to fall down Jenny’s cheeks and she leant over my lifeless body and grabbed me around the waist, pressing her face against the sheets and sobbing. “I’m not going to leave you” she sobbed, “you can’t make me, I won’t.”
Since the accident Jenny and I continued to talk about marriage, I guess that was only natural, but despite everything we still wanted to go through with it. Don’t misunderstand me, it was not a decision we made lightly. I had many doubts in the first couple of months, and there were many times when I told Jenny to leave me and go and find a “real man”, but in the end neither of us wanted to contemplate life without the other. We had plenty of advice from people who told us to wait and give it more thought, and after a series of our extended discussions with the hospital chaplain he too had come to the decision that we needed more time to adjust to me being in a wheelchair and re-define our relationship.
The doubts of the hospital chaplain held little sway with us. One of the nurses mentioned she had a brother who was a marriage celebrant and we got him to do the ceremony. It was held at the Park Royal Hotel on the 22nd February 1992. The wedding was very small with only about 25 people attending. It was small as many of our friends could not get to Brisbane to join us.
On our wedding day I woke in the hospital as usual and opposite me was my American friend Michael Knepler, who had been with me since those days in intensive care. Suddenly I heard him shout, “Oh no, here comes Jenny, you can’t see her on your wedding day, that will bring you bad luck.”
I sarcastically replied, “Starting our married life off with bad luck, gee, we wouldn’t want that would we?” Nevertheless, the day went well.
Jenny’s best friend Kerri had come down for the wedding as her bridesmaid and her Kerri’s boyfriend Michael Tanswell, a true-blue Edmonton local, was happy to fill in as my best man.
One of the nurses from Princess Alexandra Hospital Spinal Unit Helen Hart, filled the role of matron of honour. Helen had been married to a quadriplegic for many years. She was an inspiration and gave Jenny and I the belief that we could have a meaningful marriage and life together despite my disability.
By August of 1992 my nine months at the Princess Alexandra Hospital Spinal Unit were up. I had done my time and we were ready to go home. I felt that I was emotionally prepared for my return home, but as the plane approached Cairns and I could see the familiar countryside, I could feel tears rolling down my face. For the first 2 months after our return Jenny and I moved in with my parents and supervised the completion of our house which was about five minutes’ drive away.
I was determined not to think of the things I had lost, or the things I could no longer do, instead I committed to concentrating on the things I have gained from my accident. These gifts include a greater appreciation of life and a lot more compassion for the suffering of other people. I had more respect and love for Jenny than ever before, I guess some people don’t realise how much they love and need their partner until it’s too late, and then they have lost the chance to tell them how they feel. I thanked God that I still had this time to spend with Jenny and the opportunity to tell her how I feel.
Jenny and I had been in our new house for about six months when I was accepted to study at James Cook University. I was the first quadriplegic to study at their Cairns campus, and I embraced to the challenge.