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?It should be no surprise to my critics
that I’m so desperate to be “cured”; why should I want
to be associated with such a judgemental, intolerant, angry and petty
bunch of people??
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Lara responds to her critics
O.K, hands up, I surmise from the passionate response to my last column,
that I was unfairly ambiguous about exactly what I am doing at the moment,
pertaining to my physical recovery.
I did say in the last column that I would tell you more about it in my
next column, (i.e. this one) but many of you just couldn’t wait
to start pontificating and it’s opened up a whole can of worms that
are busy hermaphroditing themselves into many more worms that now threaten
to engulf the entire website.
To save Youreable from such an unnecessarily slimy demise I am here to
clarify my position and put a stop to, or at least make more informed,
the rather charmingly entitled “Lara’s Finally Gone Off Her
Rocker!” debate. (Incidentally, this is a disability friendly site
and I would like to think that if indeed I really had become mentally
unbalanced, you readers might be a little more sensitive about the terminology
usage.)
I’m working with Hratch Ogali who teaches “Mind Instruction”
and have written more concisely what this entails in an article for The
Sunday Telegraph which I’ve reproduced in unedited form, at the
end of this column.
The paper wanted me to write my life story so much of it you will already
know. You will glean from my piece that I am getting better, it’s
not a case of hoping or praying, and being disappointed when nothing happens;
it is happening. As someone with a degenerative condition, I know that
it is my responsibility to share this information.
With my experience of disability, and the judgemental attitudes that I
face from some disabled people because I choose to do things differently
and make no apologies for living the way I believe is right for me, I
wouldn’t write about something that I wasn’t sure of. (When
I say “some” disabled people, I refer to the handful of critics
that have a negative opinion about whatever I say or do and can be found
hijacking every discussion topic with my name in the title. After attacking
me, they then launch into anyone who tries to support me.)
I waited until I had made substantial improvement before talking about
this because of the reactions I know this will provoke, but I am not saying
“I hope this will help”, I’m saying “this is helping”;
it is not debatable. I have seen my progress, I am experiencing the results
daily. You can see for yourself on Channel 5’s “Open House”,
on Monday 29th July at 2.20 p.m.
Hopefully, they’ll be showing some footage of me walking a few months
ago and walking recently to show how much I’ve improved. Yes, I have
a way to go before I’m walking unaided, it takes time to build up
wasted muscles, but based on my improvement so far, I believe I will make
it happen.
Judging by the moans on the discussion forums that I write about myself
too much, “some” of you still haven’t grasped that my
remit for Youreable is to write a diary column; this means that I write
about my experiences, my views, my thoughts.
I notice “some” of you take exception to my lifestyle because
it doesn’t mirror yours exactly; I work in the media, I travel to
exotic places, I try techniques to help me “get better”, I
am quite obviously the devil. I even read someone complaining about the
fact that I wrote in my column that I liked Maltesers!
No wonder disabled people are so under-represented in the media, and no
wonder so many people in power are scared to get involved with disability
issues when the stereotypical “bitter and twisted” disabled
person that I thought was just an urban myth, is alive and flourishing
on this website.
It should be no surprise to my critics that I’m so desperate to
be “cured”; why should I want to be associated with such a
judgemental, intolerant, angry and petty bunch of people?
For all of you who accept your condition and enjoy your life, I have nothing
but the deepest respect but don’t castigate others for dealing with
their impairment differently.
Each disabled person is equally valid no matter how they choose to cope
with their often very difficult situation. It is no one else’s place
to be angry with me for trying to get better; I am the only one who can
know what is right for me.
I do not intend to abandon the work I have started in speaking up for
disability rights and social integration but I don’t believe I need
to be severely and progressively crippled to do that. Let’s face
it, like me or loathe me, I’m a disabled presence; I’m out
there in the public arena and people listen to me so understand that if
I was of the “acceptance” inclination, it would not be many
more years ‘til I would no longer be physically able to carry on
working.
I don’t expect everyone to like me, I’d much rather provoke
thought and discussion from my columns but it is unnecessary to launch
such personal attacks against me and each other, as I have read on the
discussion forum. It is possible to make points rationally and intelligently
without getting nasty. It has been a real pleasure for me to read the
supportive responses; a big thank-you to everyone who has had the decency
to keep an open-mind about what I’m doing.
The Sunday Telegraph article
I have a degenerative spinal condition and been using a powered wheelchair
full-time for the past six years; I am now twenty-eight.
I hate being disabled. I understand that this isn’t what people
want to hear from someone who’s severely incapacitated. You would
rather read that I’ve learnt from my disability, I’ve accepted
it as part of me and even though the gods of conventional medicine have
told me that my health will deteriorate to the point where I am completely
immobile, I’m O.K with this because I’ve made peace with my
physical body and I’ve reached a higher plane, but that’s
far from the truth. Having had so much time to think has made me very
self-aware and I know that I cannot believe my fate is to spend the rest
of my life with this increasing frustration, indignity, pain and dependency.
But no matter how bad things have become, I have always hoped that I would
get out of this wheelchair and recover completely and now my dream has
started to come true. I’m learning “mind instruction”
and my health is improving by the day.
When I was ten, I was enjoying life at boarding school and my passions
were dancing, horse-riding, roller-skating and acting; I was going to
be a ballerina or a film star. My mum, Debbie Moore, had become famous
for starting Pineapple Dance Studios and I was excited to see her in the
newspapers and me and my dorm were allowed to get up early and watch when
she was interviewed on breakfast telly.
Then, I had what was thought to be a pulled shoulder muscle. Ten days
of excruciating pain later, I was taken to hospital; I had had a spinal
haemorrhage. After an operation to clean up the bleed I was left completely
paralysed from the neck down. The damage to my nerves was so severe that
the surgeons told my parents that I would never move again and advised
them to let me know this immediately so that I could “adjust”
but my parents refused, realising what emotional damage this information
could inflict upon an already critically ill child. I had no idea how
ill I was and my mum and dad forced themselves to act as if everything
was completely normal. I couldn’t understand why my headmistress
looked like she was about to cry when she came to visit me.
Under the supervision of my doctor, who was homoeopathic (although the
conventional doctors referred to him as a “quack”), I recovered
totally except for my left hand which remained partially paralysed. I
was back to school seven months later.
Unfortunately, due to the lack of medical technology at the time, the
cause of the haemorrhage was never diagnosed and four years later, I was
horse-riding when I suffered a second bleed. A scan showed that I had
a spinal AVM (arterial venous malformation); a faulty artery that had
ruptured, causing damage to the spinal cord and nerves. I needed emergency
surgery.
At fourteen, hospitals consider you an adult and in the time before my
parents arrived (they had to drive up to Bristol) there was no one to
shield me from the stream of medical professionals eager to regale me
with the details of my diagnosis. One nurse told me; “if you don’t
take these pills, you could die”; it was just the kind of bedside
chat I could have happily done without at the time.
After six months of physiotherapy, I was left with some paralysis in my
left foot and leg to go with my paralysed left hand. I could walk unaided
but with a severe limp. I went to a specialist in New York and had micro-surgery
to stop the AVM from bleeding again.
It was difficult going back to boarding school with such an obvious disability.
I had to make new friends now that I was being literally left behind by
my old friends. A few months later my dad died of cancer which devastated
me and I became even more isolated especially as the headmistress had
instructed the school not to talk to me about it; I couldn’t wait
for my GCSE’s to be over so I could leave.
I moved into a flat in London and went to the French Lycee to do my A
levels. Finally, I had my independence and after ten years of being at
all girls boarding schools, I was now with boys! Even though I loved boys,
I was way behind my friends when it came to having boyfriends. I was very
self-conscious because of my limp and the boys seemed to be as frightened
of me as I was of them. But then I met James, a beautiful boy, who didn’t
notice there was anything “wrong” with me and we fell in love.
This greatly helped my self-esteem and we were inseperable for a year
but when he left me, I was heart-broken. It was then that I became markedly
weaker and started to use a walking stick.
I went to University College London but found the campus difficult to
navigate as the lectures were so far apart, and I left after a couple
of months. I panicked because I didn’t know how I was going to cope
with the rest of my life if I couldn’t even manage going to college;
I had to get better now.
I went to California and spent six months working out in a clinic that
specialises in physical rehab but instead of improving my strength, my
muscles became stiffer and my balance got worse. Tests revealed that a
cyst was pressing on my spinal cord which had to be removed if I was to
regain any mobility. I returned to London frightened but prepared for
the surgery which I hoped would answer my prayers. However the neurosurgeon
told me that the position of the cyst meant it was too dangerous a procedure
and the operation was cancelled.
At this point I lost all hope, I became severely depressed and suicidal
and was admitted to one of those clinics that are now quite fashionable
and cool but weren’t then. I made friends with people who had psychosis,
schizophrenia, alcoholism, drug addictions and eating disorders and I
learnt a lot from my time there.
Now, I was leaning on walls or holding people’s arms to get around
as the walking stick was no longer enough support. My health continued
to deteriorate and conventional doctors told me there was nothing they
could do. Unable to accept this prognosis, I saw many healers and alternative
practitioners in my search for a cure but nothing helped. By the age of
twenty two, I was dependent on a powered wheelchair and no longer able
to do anything for myself. I was having home-help from the council and
gritted my teeth as a stream of strangers came to my flat to help me bathe,
make food and take me to the loo. I was hugely displeased by the whole
scenario and felt that I would wake up one morning and find it had all
just been a horrible nightmare, then, I would get up, go to the loo (without
an audience), get washed and dressed all by myself and begin my real life.
Then, I was interviewed on “This Morning” about my experiences
of disability and a producer spotted me and offered me a presenting job
on ITV’s “That’s Esther” with Esther Rantzen and
Heather Mills. This was a turning point for me. It got me off income support
and gave me a purpose.
I have unwittingly become a spokesperson for disabled people because I’m
on TV and I happen to be disabled. I write a fortnightly diary column
for the disability website “youreable.com” and am often asked
to give speeches or do promotional work for disability related initiatives.
My disability has become my career but this does not make me any happier
to be disabled. Apart from the physical difficulties, I am shocked and
furious by the way disabled people are blatantly and unapologetically
ostracised in our society. I experience this prejudice every day; inaccessible
buildings, inaccessible “public” transport (are we not part
of the public?), lack of employment opportunities, people’s patronising
and fearful attitudes, it’s all frankly immoral and society’s
view of disability need to be thoroughly re-addressed. Disability is perceived
as something to be ashamed of when what’s truly shameful is society’s
inability to treat disabled people as human beings.
I have no shame about being disabled but I would rather be able-bodied
and I believe that choice is mine to make. This has caused controversy
amongst some disabled people who believe I have “Christopher Reeve
Syndrome” because I’m looking for a cure. They believe that
this is wrong, unhealthy and delusional and I should get on with the business
of accepting my disability and enjoying my life. I counter that no one
has the right to assume they know how another person should best live
their life especially when dealing with a situation as difficult and painful
as having a severe disability. I applaud people who can accept their disability,
I applaud people who resent being disabled; there is no right or wrong
way to live through such an experience, each person has to find their
own method of coping and mine is to fight and now I have an ally.
I met Hratch Ogali*, “the mind instructor” when he wrote to
me after reading an article about my situation and we have worked together
since February.
The philosophy behind “mind instruction” is simple; the mind
controls the body and our emotional responses. Emotions can have a constructive
or destructive effect on our physical being depending on how we react
to them. It is possible to master emotional and physical responses by
“instructing” the mind. By learning to deal with emotional
stress and by telling my mind what I want it to do, I have started to
get my movement back.
To make such radical changes to my personality and my physical being takes
a huge amount of energy and concentration. So, in order to focus, I decided
not to see or speak to anyone apart from my partner and my carer for six
months. It was a huge adjustment to cut off from my friends and family
at first but after a few days, I felt relieved that I had no distractions
and could take the work seriously.
For the first few weeks, Hratch and I worked purely on pin-pointing and
removing emotional blockages and for the past three months we have been
practising standing and walking every day. It isn’t easy work, I
have to force myself to be control my emotions and remember my instructions
but the results are undeniable.
At first I needed two people to support me and I would struggle to manage
even a few steps but now I only need one person’s help, I can walk
for long stretches and am increasing in strength, stamina and movement
every day.
My mum met with Hratch and I in the park last Saturday and she could not
believe the transformation in just three months. I was able to hug whilst
standing and she was stunned by how much my posture had improved and how
much stronger I was all over my body in such a short time. She too has
never given up hope that I would one day recover, now she too is wholly
convinced that that day is not far off.
* For more information about Hratch Ogali and his work, go to: info@mindinstructor.com
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