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Overcoming Multiple Sclerosis
An Evidence-Based Guide to Recovery
By George Jelinek
Allen & UnwinCopyright © 2010 George Jelinek
All rights reserved.
ABOUT MY MOTHER, MS AND ME
Do not give up HOPE
Dorothy Miller Cole
Mum and Dad had difficult lives. I understand that better now that they are both gone, and I am a parent. Dad was born in Prague in the newly created Czechoslovakia on the day World War I ended. Every year the government sent him and the few others born on that day a special certificate commemorating the event. Dad was very proud of that.
His was a farming family. Dad used to regale us as kids with stories of his childhood. We used to beg him to tell us all the tales, as we sat waiting to pick up Mum from Graylands Mental Hospital where she worked as a nurse. He used to deliberately take us early, so much did he love telling the stories. Who knows if they were true or not? We didn't care. Dad's father was six foot nine, with hands so badly disfigured by warts that he always wore gloves (see what I mean?). He was a tough disciplinarian, but you could sense that he loved his children and pampered them. It seemed that Dad was always getting into trouble. The time he tried to get back into class after playing hookey by climbing down the chimney. Falling and covering himself in soot, and jumping out of the fireplace in the classroom yelling 'Boo!' like a ghost.
Somewhere in his childhood Dad found time to learn a range of musical instruments. And to paint. He was a very creative man. One of my favourite childhood memories is listening to the sound of the piano accordion rolling through the house. Dad would be transfixed by the music at these moments. He couldn't speak. He just lived the music. My children have reaped the rewards of his genes. After starting and then pulling out of engineering, my son is now studying musical composition at university, writing and recording his own work, and teaching music to high school students.
Mum was different. She was born into an aristocratic family. Some time ago I visited the house in Pardubice where she grew up. It is now a school administration building with three storeys of secretaries typing away. No one stopped us as my sister and I wandered through, but we got some strange looks from the women at the old typewriters. When Mum married for the first time, the whole town turned up to the society wedding of the year. Mum started studying medicine. But then the war came. Nothing was to be the same again.
Mum and Dad met in a refugee camp. One thing you had to say about Dad was that he had the gift of the gab, and was a charmer if he wanted to be. Mum often wondered in later years why she took up with Dad. Suffice to say they were very different, and often not understanding or appreciative of each other's differences. Their marriage lasted but was not a happy one. Dad was more in love with Mum than the other way around. She never valued the strengths he had; mostly she couldn't even see them. Dad felt rejected. But they stayed together, as so many did in those days, for the sake of the kids.
They lost their first born, the older brother I never met, at six months of age, to pneumonia, in a refugee camp fleeing the communists. When faced with the big decision about which boat to get on out of Italy, with my older sister now in tow as a baby, they favoured Australia over Argentina because Australians spoke English. All the decisions that have led to me being here right now have happened as they should have. I'm only realising these important things now. That's just one of the gifts this illness has brought me.
One of Dad's favourite stories was that my older sister Iva was underweight and couldn't legally get on the boat to Australia. Dad made her a dress out of curtain material he found, but then sewed some lead into the ribbons in her hair to get her up to the required weight. Judge for yourself whether this is true. I never knew.
And so to Australia. The Northam refugee camp. Learning English. Trying to find work. Dad did everything. He built houses, he painted them, he painted signs, he did window dressing for the big stores, anything that involved some creativity. He told us how in those days people would think he was stupid because his English was so poor and they would refuse to pay. 'Bloody new Australians!' But Dad would get the last laugh by sneaking back in the dead of night and painting their front door jet black while they slept.
Times were tough. One daughter turned into two, then two sons, then another girl, before they finally stopped. Seven hungry mouths to feed and never enough money. Never any regular income. Mum eventually pushed Dad into accepting a job as a clerk at Perth Dental Hospital, a steady job he kept until retirement. It wasn't fun or highly paid, but the money was regular. Mum qualified as a mental health nurse. She used to work night shifts so that she could be there in the daytime to look after the kids while Dad worked. The overriding priority for my parents, as it was for most other migrant families, was to set their kids up for the sort of lives they never had. And they succeeded. It would have been hard enough. But then along came MS.
How old was I when Mum got MS? I don't know. My youngest sister Suzette says it was when Mum was 40, which would have made it 1963. I was only nine then. It seems to me that Mum was 42 or 43. One night Mum was on her way to night shift at the hospital. She was no more than 500 metres down Scarborough Beach Road when a drunk driver turned in front of her. She was driving an old Morris Minor which had a doorknob for a gearstick handle. Seatbelts didn't exist. She flew through the windscreen and badly lacerated her face and head. Dad used to tell us that he got the call from a friend who saw it happen from a nearby phone box and raced down there. The ambulance officers couldn't get her out so Dad ripped the door off. He said he didn't know where the strength came from.
I heard all the hushed voices in the kitchen and got up to investigate. You can always tell when there's bad news, even as a kid. My brother Peter and I slept in the enclosed back verandah. We had not long graduated from bunk beds. I came back to the bedroom and Peter told me to stop making a noise. In the distance was the pitiful wail of an ambulance. I said, 'That ambulance is for Mum' and started crying. I reckon I was eleven and Pete was eight. That's when it started.
A few months later Mum started dropping things. As a kid all those things just sort of pass you by. Soon there were doctors' appointments, and tests. Mum even had her own neurologist. The real significance of what was happening didn't sink in. Children just go on having a good time, no matter what else is going on.
The next year I won a scholarship to Scotch College. My parents' dreams had come true. They were able to see me properly educated, without destroying the family financially. Without the scholarship a private school would never have even been considered. The first day at Scotch was the loneliest day of my life. Standing there in a large quadrangle, with my maroon school cap tightly held in two sweaty hands in front of me, knowing only two boys who were sons of friends in the whole school. I never wanted this.
Meanwhile, Mum started to deteriorate. At first it was just stumbling a bit. We always used to holiday in Denmark in the south-west of Western Australia with the family whose kids I knew at Scotch College. They were Czech too. I remember lying in wait for Mum when we were all going for a walk on the beach, jumping out from behind a sand hill and pushing her over. Then not letting her get up, with both of us laughing uncontrollably. We didn't know how bad it was going to get.
I can't remember when she went into a wheelchair. Modifications started appearing around the house: shower rails, showering chair, ramp up the front stairs, the car was modified. By now I was starting to grow up, and it was starting to mean something. And then I began university.
Why did I choose medicine? A little amateur psychology is enough to see what forces pushed me in that direction. And Mum was no amateur psychologist. She was an expert. Just as Mum had guided other decisions I had made in my life before, I was again unaware of her directing me to fulfil her adolescent ambitions. But her motivation was, I am sure, good. Mum was a curious mixture of sensitivity, intelligence and the kind of sarcastic cynicism that you get in some mental health nurses. She was also a great manipulator. Suffice to say I started medicine without ever really knowing why, although deep down a little hint of wanting to find a cure for MS occasionally bubbled to the surface.
Almost immediately I discovered a world I had only dimly glimpsed before. University was fantastic. Parties, independence, music, alcohol. It took a while for my previously very high marks to suffer, but suffer they did. Soon I had moved out of home, and in with what Mum would have thought was definitely the wrong crowd. But did the good times roll? I lasted one week at a residential university college before being expelled after a woman was seen leaving my room late at night. Luckily Mum and Dad were away on holidays in Tasmania at the time, and I managed to get myself into another college and concoct a fitting story for my parents. This was probably the last holiday Mum was capable of going on.
Forklifts were needed at the airport to get Mum into the plane. She said she felt quite regal with all the fanfare and attention. But it was a huge struggle. More and more often at this stage, when I'd come home for the night, I would catch Mum looking at me from her wheelchair with a tear in her eye. You knew when she had that look, that the big things in life were going through her mind. Loss, separation, death, the burden she was. The burden was her recurring theme; she was adamant she wouldn't be a burden to anyone. It was one of my first thoughts when I was told I had MS too.
I could see his lips moving but I couldn't hear anything. It was a beautiful late Sunday afternoon in Perth. The light was coming through the leaves from a low angle, firing them up with late autumn colour. In an instant, the whole world had changed. I was not to know it but I would never feel the same way about life again, and my orderly, seemingly successful life would soon fall apart.
'It's not the worst thing I could be telling you right now.' I heard it as if in some sort of dream. It certainly felt like the worst. We were suddenly talking about a magnetic resonance imaging scan that night at the hospital. He was ringing the radiologist. All I could think of was my family. I kept thinking to myself that my daughter was only seven. Only seven. All the plans I had, all the aspirations. Suddenly a big hand had reached into my life and taken away my future. And inexorably altered theirs.
On the outside I was calm and grateful that he had taken so much of his valuable Sunday afternoon to see me and make the diagnosis. Inside, I was just numb. Why hadn't I realised that I had MS? I now know that it is many times more common in family members, but somehow, with Mum having had it, I had just assumed that lightning wouldn't strike twice. Not me.
We had got back from a wonderful week at Rottnest Island for the kids' school holidays. The first morning back at work, I noticed the shoelace on my left shoe kept falling down into my shoe. But every time I looked for it, it was no longer there. As the day wore on, the feeling of something there got more and more marked. By next day it was a feeling of numbness, like having been to the dentist, over all the toes of my foot. By now I was starting to remark on it. How odd it was. By the next day it had spread up the outside of my lower leg. I was getting nervous. Being an emergency physician, I am not prone to panicking. I started thinking about all the possibilities. A slipped disk? I had had back problems for years, but swimming regularly had fixed that. Some unusual peripheral neuropathy? I let it go for another day, but by the Thursday I knew I was in trouble. I chaired a conference session that afternoon for the national meeting of the College of Psychiatrists, and introduced one speaker completely out of order, so preoccupied was I. I hadn't ever made quite so public a mistake before. I was working late in the emergency department that night, and I just couldn't ignore it any more. I was taking over the evening shift from one of my colleagues and thought I would just casually mention it to him and maybe get him to look at me. I trusted his judgment. But it was not to be. Every time I was about to say something, someone would walk into the office. When we were eventually alone, I started, and the phone rang. That was the end of that.
So I worked hard that night, although I found it difficult to concentrate. The numbness was progressing pretty rapidly and by 11 p.m. I was numb all the way up the leg, and around my backside. I hardly slept that night. Next morning I had another colleague from ED look at me. However, I 'sabotaged' the diagnosis by telling him I thought it was a slipped disk. Being junior to me, naturally that's what he thought as well. So I spent an anxious hour or two waiting in X-ray while another friend tried to squeeze me into the burgeoning Friday queue for the MRI.
To my surprise, there was nothing there. But what you find depends on where you look, and they looked for a slipped disk and missed the MS lesion two levels higher. I found this really puzzling. Was I imagining it? I had long before promised that we would visit my father-in-law in the country over the weekend, so although it was already late in the day off we went. But to say I was distracted over the weekend would be an understatement. I was really worried. The amazing thing though is that MS never once entered my head. I feel embarrassed now that, as an emergency physician, I did not consider this differential diagnosis. We drove back on the Sunday, and I literally sprinted into the house and phoned a neurologist I worked with. I was so grateful that he could see me in his consulting rooms straightaway.
After seeing him, an MRI scan was booked for 6 p.m. I needed to tell my wife in person so I thought I would drive the 5 kilometres home before the MRI. But the Eagles had just finished playing and as I pulled out into the stream of traffic coming from the ground I realised I was not going to get home and back in time. So, sitting in the gathering gloom in the hospital carpark, I dialled home on the mobile. It sounded like someone else saying it. 'He thinks I've got MS.'
THE FIRST FEW DAYS
The first few days were awful. Should the kids be told? Should I tell anybody? What about the financial implications of not being able to work? The boys had only just started at an expensive private school. There were just no answers.
I realised that I had to face this, though. My initial reaction of not telling anyone just wouldn't work. How could I deal with this illness without acknowledging to the world that I had it? Keeping it a secret was impossible. I realised I had to start somewhere. Over the course of the day I resolved to tell my brother and sisters. First, though, I had an appointment at the hospital to get my first day of high-dose intravenous steroids. I wasn't prepared for how difficult that would be. Now the nurse putting in the IV line wanted to know how long I'd had MS. I found myself forced to talk about it. Those first few sessions of steroid therapy were awful. There was just no way to avoid the diagnosis. You could feel the pity in their eyes. Professor of Emergency Medicine at the university, young family, everything to look forward to. You could see how they would go home at night thinking 'Thank God it's not me'. At that stage, I still had no inner strength. I had nothing to hang on to. I felt like a man sentenced to a merciless, gradual destruction from which there was no escape.
That evening, it was hard to organise telling my brother and sisters all together. I ended up having to tell Iva over the phone. While she drove to Gina's, I picked up Suz and met her there. Peter lives about 200 kilometres south in Bunbury, and he wasn't home when I tried him by phone.
Sitting in Gina's dining room, crying. In between sobs, saying 'I don't want to be a burden, I don't want to be sick, I don't want people to have to look after me'. In the background Russell, Gina's husband, walking around, head bowed. He'd never seen me like this. I could see how he was hurting too.
All my life I had been strong and independent. It is becoming clear to me that this is a common characteristic of many people with MS. I couldn't imagine asking for or needing other people's help just to get around day to day. It was tough on everyone. We all hugged and cried over and over again until we were all cried out. And finally I got hold of Pete. I had hoped I could get hold of him earlier, so that he could go through the grief with all of us. I knew it would be harder for him on his own, especially if we didn't all do it together. There were no marvellous insights. No answers. All of us just thought it was catastrophically unfair, but that was all.
Excerpted from Overcoming Multiple Sclerosis by George Jelinek. Copyright © 2010 George Jelinek. Excerpted by permission of Allen & Unwin.
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