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INVISIBLE OPPONENT

INVISIBLE OPPONENT

From childhood Claire Anderson knew there was something about her that was different. At fourteen she learned what it was when doctors diagnosed her with the degenerative disease muscular dystrophy. In the years that followed Claire found herself engaged in a constant struggle with the disease she came to call her 'invisible opponent'. The stakes were high...MD threatened Claire's sense of self-worth, her chance for love and the privilege of bearing a child. 

In Invisible Opponent Claire writes with honesty and simplicity about the impact of the disease on her and her loved ones and the challenges she has overcome to realise her dreams and lead a fulfilling life. Claire ‘learns to love the lesson the pain has taught her’ and becomes the ‘change she wants to create in others’.

She and her husband Geoff are the parents of a lively three-year-old, Sabine Jillian. Claire is a certified Life Coach, Professional Speaker and Trainer who draws on her own experience to encourage others to find a positive direction in their life and live their own dream. She hopes this autobiography will promote greater community understanding of people with disabilities and inspire others to overcome the challenges in their own lives.

In Store Price: $AU21.95
Online Price:   $AU20.95

ISBN:1-9208-8470-X
Format: A5 Paperback
Number of pages: 188
Genre: Non Fiction 

 

 

Author: Claire Anderson
Imprint: Zeus
Publisher: Zeus Publications
Date Published: 2004
Language: English

HOME PAGE

 Author’s preface 

It is a privilege to share my life story. There are areas of my life that are private and difficult to relive.  However, I felt the need to open a door to my heart and become vulnerable, in the hope of offering an insight into the life of a person who has a disability.  To live a life with a disability is to be brave, to face challenges every day and deal with society’s fear of that which is different. Even if our lives are not directly touched by disability, disability has a way of indirectly touching us. 

Invisible Opponent reflects the emotional and physical challenges associated with living with Muscular Dystrophy.  The message I want to share is that being diagnosed with a condition, any condition, affects not only the person living with it but the lives of family and friends.  My story follows the process of an individual, a family and friends from grieving the loss of a quality of life accepted as ‘normal’ to being open and vulnerable to change, emotional growth, healing and forgiveness.  To win from the inside out requires re-evaluating life and what being happy truly means.  After you have read Invisible Opponent I hope when you next encounter a person with a disability you will let the fear dissolve and remember they, too, have hopes and dreams.  The only difference is, they sit while dreaming. 

 

Chapter 1 

Discovering it

 

Imagine for a moment you are fourteen years old…do you remember the sense of freedom, the lack of responsibility?  Laughing with friends for no particular reason…Riding your bike down a hill with the wind on your face and the sun on your back…The only worry you had was deciding what outfit to wear to the school dance.  It was a time of self-discovery…like when a caterpillar changes into a beautiful butterfly.

It was a warm day.  I felt the sun glaring down on me through my school blazer.  I pulled at my tie and pushed down my socks as I waited at the school entrance for my mum.  The playground was quiet …classes were still in progress.  The only noise was the sound of a kookaburra’s laugh.  A familiar car pulled into the car park.  It slowed down in front of me and I opened the back door, threw in my school bag and blazer, and then sat in the front seat.  We drove out of the school grounds and headed to yet another appointment.

On the way Mum tried to make conversation but I barely responded. I didn’t really know what the appointment was for…probably another check-up. I’d seen so many doctors, physiotherapists and chiropractors I was used to the process.  But something seemed different about today’s appointment.  Even though Mum was making general conversation… there was a sense of uneasiness.  

We arrived at Fremantle Hospital, parked and walked towards the glass entry doors.  As we entered, the sterile smell overwhelmed me and my gut instinct was to turn around and leave, but my body continued while my head insisted I was going the wrong way.  A kindly nurse greeted us.

‘We have an appointment with Dr K.,’ Mum said.

 The nurse smiled and handed us some paper work to complete. The hospital was very busy.  The waiting room was large and cold.  Patients sat at a reasonable distance from each other, careful not to intrude in personal space.  Some smiled while others sat quietly, deep in thought.  Sweat began to appear on the palm of my hand.  I was anxious to get this over and done with. 

At last my name was called and I heaved myself out of the chair. Mum was first into Dr K’s consulting room.  He rose and introduced himself, a tall man with a heavy European accent, and asked us to be seated.  We waited nervously.  Looking up from his paper work, he adjusted his round glasses. 

‘How old are you, Claire?’

‘I’m 14.’

‘Do you have any brothers or sisters?’

 I had one of each, both older than I.  Dr K asked Mum about their physical condition. 

‘They are both fine,’ she said.

Dr K began to run through our family tree.  He seemed to already have a lot of background information.

I sat quietly.  My body felt numb. Mum and the specialist continued to speak although I was no longer hearing what was said.  As a protection, I’d developed the ability to withdraw inside myself, somewhere safe.  I would switch off from the outside world.  Every now and then, however, some of their conversation registered. 

At last Dr K said, ‘I’ve recently seen Claude and diagnosed him with it.  It sounds like she has what Gypsy and Claude have.  Let’s move into an examination room and we’ll take it from there.’

Gypsy and Claude were both my cousins.  Gypsy was 17 years older than I.  I enjoyed spending time with her when I was growing up.  When Gypsy was at teacher’s college she was required to do an assignment on the development of a child and she chose me…I enjoyed going out with Gypsy in her Volkswagen beetle…I looked up to her. When I was with Gypsy I knew she wasn’t able to run…and at times was unsteady on her legs.  It wasn’t something we talked about.  I didn’t know there was a name for what she had…and I didn’t understand what that had to do with me.

 

My cousin Claude was about 20 years older than me.  We didn’t spend a lot of time together.  We saw each other mainly at Christmas.  Claude always seemed healthy and physically active to me.  In fact Claude’s father…my mothers brother, was a long distance runner and very athletic.  My mother and I were far from athletic and hence I did not understand what he and I had in common.  

 

  The nurse with the kind expression gave me a gown and told me to leave on my underwear.   I walked into the cubicle, kicked off my school shoes and proceeded to undress.  As I did, Dr K entered the room. 

I heard him tell Mum, ‘From what you’ve told me, I think she has it.’

What was he was talking about?  I came out of the cubicle and stood before my audience.  The doctor walked behind me and asked me to lift my arms above my head. 

‘Mmmm,’ he said.  ‘See the winging of her scapula?’

Mum was standing beside him. ‘Yes.’

The nurse was busily taking notes. 

Next Dr K asked me to take off my gown so he could see the front of my shoulders.  ‘Lift your arms forward, Claire.’ He walked in front of me, looking perplexed.  ‘Can you stand from squatting?’

This was something I’d never really remembered being able to do.  I got on the ground and basically pushed myself up using every possible muscle. 

‘Can you whistle?’

Actually, I couldn’t and I’d always wondered why. 

I performed every exercise the doctor asked until he looked at Mum and once again said, ‘Yes, she definitely has it.’

By now this it they were talking about was starting to annoy me.  I wanted to know what it was. 

‘One last test, Claire,’ the doctor said. 

Another nurse appeared with a machine I hadn’t seen before.  I climbed onto the bed and waited for instructions.

‘This machine will give us a better understanding of which muscles have deteriorated and to what degree,’ Dr K said. 

That’s not too bad, I thought.  The doctor reached for a long needle.  I froze.  Attached to the needle was a wire that plugged into the machine.  I was instructed to roll on my side.  The doctor inserted the needle in my hip and asked me to lift my leg.  I could feel the hot tears welling in my eyes.  The machine made several noises and the nurse began taking notes again. I looked at Mum.  Her expression was sad.  Dr K asked if I wanted Mum to hold my hand, but I was angry.

‘No!’ 

What was going on?   What was this it and why was I a human pincushion? 

The doctor proceeded to test the muscles of my shoulders, arms and thighs.  Finally it was over.  I was able to restore my dignity and get dressed. 

As I headed back to the doctor’s office I could hear their voices.  I entered and sat down.  The doctor began chatting as if I knew what he was talking about.  He used words like Muscular Dystrophy…normal life…cousins and genetic condition.  I wanted to scream, ‘Stop!  What’s going on?  What is this Muscular Dystrophy, how did I get it and what does it mean?’  I took a deep breath and tried to absorb what he was saying. 

‘Muscular Dystrophy is a genetic condition.  For Claire to inherit Muscular Dystrophy, one parent must also have this condition.’

Apparently, that parent was my mum.  This explained a lot, because she also couldn’t run, had difficulty playing sports and lived with chronic muscle pain. 

Dr K continued, ‘With each pregnancy there is a 50 per cent chance of the child inheriting the condition…and Claire’s children will have this 50 per cent chance of inheriting Muscular Dystrophy from her.’

Time seemed to slow down.  I was fourteen years old, I hadn’t even thought about having children…my life went into flashback. 

I first knew something wasn’t normal about me when I was eight years old.  I couldn’t keep up with my friends.  I came last at sports carnivals and no one wanted to choose me for team sports.  I think it was at this age I developed the ability to switch off from the world and hide inside myself…because I just didn’t fit in.  The only time I really felt happy was when I was eating.  I began to gain weight and told myself this was the reason I couldn’t run.

I hated Monday mornings because it meant the beginning of another week at school…I tried everything to get out of going.  When I had to go I usually carried a supply of bandages in my school bag.  I’d inform my teacher my ankle or toe was injured so I couldn’t participate in the morning run. Only once did I use the excuse I had a sprained wrist because I was informed I could still run with this injury and to get moving. After a while the injury excuses started to wear out, so I developed an allergic reaction to grass and couldn’t possibly run around the oval. When that didn’t work, I tried dropping a rock on my foot.  That failed too, for I couldn’t break my foot.

The worst time of the year was the sports carnival.  I started having anxiety attacks near the time. I would beg Mum not to make me go to school. Dad was a pilot so when he was away Mum let me stay at home.  Dad always wanted me to participate. 

‘It doesn’t matter if you win or lose, it’s that you participate,’ he would say. 

I can remember making such a fuss in the lead up to one sports carnival, that Mum had to take me for an x-ray on my toe.  It wasn’t broken but I was sure I needed to have chiropractic work on it.  I’m sure the stomach pains I had were psychosomatic…but I really believed I was in pain. To me, my emotional pain became physical pain.  Eventually when I was ten I spent half a day in Princess Margaret Hospital.  They tested me for just about everything…however, nothing showed. The only conclusion was that I was over weight.  I had my first meeting at Weight Watchers the following week.  I didn’t always want to go so Mum attended the meetings for me.  I slowly lost weight.  However the one thing I really wanted didn’t happen…I still couldn’t run.  I began to question Mum about it.

She just hugged me and said, ‘Our bodies were not built for running, Claire, we’re built for comfort not speed.’ As a child, she couldn’t run either.  I only partially accepted her answer, though…I was still feeling angry and frustrated.

The high school I attended was a private Catholic girls’ school.  In our first year we were required to do our Confirmation.  I needed someone to sponsor me and asked my sister, Michelle.  Part of the procedure was to kneel in front of the bishop for a blessing.  I became very stressed about this and shared my concern with Michelle.

‘I’m not sure I can do it.’

 With her encouragement, I practised getting up from the ground for what seemed like hours.

‘Bring up one leg, then push,’ Michelle said. 

I tried but couldn’t do it.  I had to lean over and push with both hands to get myself half way up, and then I would straighten my back.  We were both confused. 

On my Confirmation day, I was sick with fear.  What if I tripped and fell or couldn’t get up?  Luckily the day came and went without incident.  The bishop was sitting on some stairs, which gave me some height to kneel on and I managed to get myself up.  Michelle was watching me and I saw the anxiety turn to relief…we both smiled. The ordeal was over.

‘What can we do?’ Mum’s question to Dr K snapped me back to reality.

The news was not all bad. ‘There is nothing specific that can be done for Muscular Dystrophy.  You basically need to just live a healthy life.  As long as you don’t want to be a model or a tennis player, Claire, you’ll be fine,’ he said.

What did I want to do with my life?  I wasn’t sure. I didn’t really know who I was any more. 

‘So Claire will stay the way she is now?’ Mum asked. 

Severity varies greatly, even between affected members of one family.   The name Fascio-scapulo-humeral Muscular Dystrophy gives an indication of the distribution of muscle weakness, but not a complete one.  Facio refers to the face, scapulo to the scapula or shoulder blade, humeral to the upper arm between shoulder and elbow. The facial muscles are affected.  The selective pattern of weakness often produces a recognisable facial appearance more noticeable when the muscles are in use, which is why Claire you have difficulty whistling. Muscles of the shoulder blades are affected.  This leads to winging of the scapulae especially when the arms are held forward horizontally. The forearm muscles are usually better developed than the upper arm muscles so that the strength of the wrist and finger movements is relatively normal. He reached over to my hand and placed one of his index fingers in the palm of my hand and asked me to squeeze it.  You have normal strength in your hands and wrist Claire.

1.       The one symptom we notice with FSH patients is the feature of weakness is typically asymmetrical.  Nearly always, in an affected person, some muscle groups are stronger on the left and others stronger on the right.  ‘If this type of Muscular Dystrophy affects the face and arms, why is it that we have difficulty with our legs?’ mum questioned. The name facioscapulohumeral gives an incomplete idea of the extent of the weakness.  In people who are more than slightly affected, there is nearly always some weakness of the back and the lower limbs.  In some people it is moderately severe and occasionally it is very severe, leading to the use of a wheelchair.  Wheelchair? What wheelchair? Whose wheelchair?  My head swivelled back and forth from Mum to Doctor K. My life, my future had suddenly changed Dr K continued speaking as if the word wheelchair was something I heard everyday. Usually the calf muscles are strong and toe walking is easy.  Conversely the muscles in front of the lower leg are weak causing foot-drop, a tendency to trip and inability to walk on heels with toes raised. Not everyone with FSH has altered posture, but many do. The main effect is an exaggeration of the normal forward curvature of the spine above the pelvis.  This exaggerated curve is called Lordosis.  As the condition progresses there is a tendency for one or both knees to give way and difficulty with stairs and steps.  We just don’t know how the condition will progress in Claire.  She may be like you, he said acknowledging my mother, where the progression is evident but slow and the severity sometimes seems to level off and to progress no more – to plateau.

 

I grew up fast that day.  I was no longer an innocent child.  I took on an adult responsibility.  I shouldered this on my own.  It wasn’t something I wanted to discuss with anyone.  I needed time to digest my new life. My new future, if you could call it a future. On one hand I at least had a name for why I couldn’t function physically as others could. I wasn’t just being lazy.  I made a promise to myself that I would never let a child of mine go through this experience.  I would sacrifice any need of my own to protect my unborn child from this humiliation.

 

    

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