Blurb:Living with cerebral palsy is enormously difficult. But what if you never knew you had it? This is the incredible story of Ilana Stankler.Born the second of premature twins, from a young age Ilana knew she was different, but for all the wrong reasons. A child of the 60s, Ilana experienced first-hand the way that disability was so often brushed under the carpet and not spoken about. Her constant physical and mental struggles made her feel isolated, alone, frustrated, and misunderstood… it took 46 years for her to find out why.Part memoir, part motivational guide, Cerebral Palsy: A Story is Ilana’s open and honest journey from an angry, confused child, knowing something was wrong, but not knowing what, to the ‘real’ her – a courageous woman using her experiences and lessons to create inspiring messages about mental and physical health, positivity, resilience and change.
Excerpt
What
is it like living with cerebral palsy? I cannot answer that question, as for 46
years of my life I never knew that’s what I had. It was only in March 2009 that
I was finally diagnosed with cerebral palsy. I was born the second of premature
twins.
My
formative years were enormously difficult for me. I was an angry child. Some
days I felt isolated, angry and misunderstood. Other days I felt frustrated and
alone because I had no idea what I was dealing with. I was also out of touch
with my own thoughts, because I had no understanding about my physical, mental
and emotional issues. My issues were never brought up unless I talked about
them, then they were quickly dismissed as if the condition didn’t exist.
When
my twin was beginning to crawl, I would fall, try to get up, then fall again.
It was never something I could control. Mum noticed more or less straight away.
My dad, on the other hand, was not unduly concerned, and said everything would
be fine.
Growing
up, I felt different for all the wrong reasons. I knew there were things I
struggled with. Although I didn’t not like myself, I didn’t like being so
angry, although every now and again my kind side would appear, and I would
somehow be able to separate the two issues.
Although
I spent a lot of my formative years being angry, it would go on to take 49
years for my father to say that I was the most kind, caring and considerate of
his children. In order to earn his acceptance on a disability I didn’t know I
had, I found myself conforming more than any of my other siblings.
Mum
tried to deal with me but couldn’t cope. She was always singling me out to do
exercises, at a time when my siblings were doing something they wanted to do. I
became irritated with this, and nine times out of ten I would fight and become
angry at the injustice of it all.
Through
research I have since found out the original diagnosis of Spastic Monoparesis
at the age of two wasn’t correct, because I have two limbs affected not one,
and my leg isn’t spastic. This diagnosis was unknown to me at the time and was
hidden.
Over
the years I have had to work everything out for myself, to bring my symptoms
and the right diagnosis together. I have little muscle tone from the hip to the
ankle on my left side. I have a ‘foot drop’ and my leg on my left side is ¾”
shorter than my right side. I also have a bunion because of my ‘foot drop’. This
all explains why as a child I would drag my leg and walk toe-heel all the time.
I
hated looking at myself in the mirror. When I was standing straight, I was
lopsided because of a leg length difference and I couldn’t bear to look. When I
spoke to mum about my being lopsided, she would often say ‘I couldn’t have a
pretty face without a pretty leg.’ With hindsight without her realising, she
confirmed she was also aware of my diagnosis.
When
I wore skirts, the lack of muscle tone in my left leg was visible so people
stared. I limped and tripped when I got tired. I hated that. I also hated that
I walked toe-heel that I dragged my leg and I couldn’t pick my foot up. I hated
that I struggled to fit into shoes and that when I did manage to get shoes to
fit, they wore differently. I was also upset at having to wear a heel lift on
the outside of my shoe to compensate for my leg length difference, and that
eventually I had to have shoes made for me that made my foot look even more
deformed.
I
struggled with my handwriting and I hated not being able to write spontaneously
in front of anyone. Writing a cheque at a till was difficult, writing anything,
in fact. Since my cerebral palsy diagnosis, my neurologist has explained that
the part of the brain that controls my motor skills functions is also affected,
so that now explains the problem with my handwriting.
As
a consequence of my parents wanting me to be the same as my siblings, my issues
lay dormant for many years. I lacked mental and emotional support. It didn’t
help that I was born in the 1960s, when disability was brushed under the carpet.
That can be no excuse.
I
was told by the specialist who confirmed my diagnosis, that I was lucky,
because of my disability, I would have been considered a spastic and would have
had to attend a special needs school. He also said I would have had to have
worn callipers, and that having my issues ignored was probably a better option.
Until
the age of 15, I went to physiotherapy once a week, and the Athletic Institute
for exercises once a year and the hospital once a year for a check-up. All
those visits seemed to eat into my childhood.
But
not knowing what my condition was gave me a quiet confidence that tomorrow was
another day, things would change, and I would get better. To this day I believe
it was because I had no idea of what I was dealing with; it was the not knowing
that gave me hope.
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