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
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
re-evaluating life and what being happy truly means.
After you have read Invisible
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.
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
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.
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
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.
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.
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.
old are you, Claire?’
you have any brothers or sisters?’
I had one of each, both older than I. Dr K asked Mum about their physical condition.
are both fine,’ she said.
K began to run through our family tree. He
seemed to already have a lot of background information.
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
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.’
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
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.
heard him tell Mum, ‘From what you’ve told me, I think she has it.’
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.
he said. ‘See the winging of her
was standing beside him. ‘Yes.’
nurse was busily taking notes.
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
was something I’d never really remembered being able to do.
I got on the ground and basically pushed myself up using every possible
I couldn’t and I’d always wondered why.
performed every exercise the doctor asked until he looked at Mum and once again
said, ‘Yes, she definitely has it.’
now this it they were talking about was starting to annoy me.
I wanted to know what it was.
last test, Claire,’ the doctor said.
nurse appeared with a machine I hadn’t seen before.
I climbed onto the bed and waited for instructions.
machine will give us a better understanding of which muscles have deteriorated
and to what degree,’ Dr K said.
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.
was going on? What was this it
and why was I a human pincushion?
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.
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.
Dystrophy is a genetic condition. For
Claire to inherit Muscular Dystrophy, one parent must also have this
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.
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.’
seemed to slow down. I was fourteen
years old, I hadn’t even thought about having children…my life went into
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
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.
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
doesn’t matter if you win or lose, it’s that you participate,’ he would
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.
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
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
not sure I can do it.’
With her encouragement, I practised getting up from the ground
for what seemed like hours.
up one leg, then push,’ Michelle said.
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
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.
can we do?’ Mum’s question to Dr K snapped me back to reality.
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.
did I want to do with my life? I
wasn’t sure. I didn’t really know who I was any more.
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.
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.
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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