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Olivia Giles - Meningitus Survivor and campaigner
A former lawyer who contracted meningitis at 36 & as a result had her hands and feet amputated. Oliva grew up in Renfrewshire."People are stretched by challenges. Nobody knows what they are capable of until they try."
Seeing just how much Scottish people have punched above their weight in the past and now.
For a small nation, historically, Scotland has contributed so much to the worlds of science, engineering, literature, film and medicine and even today Scots have a disproportionately high representation and influence in both UK and world matters.
I also like the characteristic humility of Scottish people - who often seem surprised at their own success - especially when it is coupled with high achievement.
As I don't really have any personal experience of Guiding, it's hard to identify changes.
I can tell you what struck me about the Horizons
International Camp which I spoke at in the summer of 2003.
It was the number of disabled children who seemed to be included and the matter of fact and
non patronising way in which they were looked out for by the leaders and particularly by the
other children.
I am often teased about this because I do not share her politics but I have always admired the
determination and drive of Margaret Thatcher as a highly successful woman in a man's world.
I did have the pleasure of meeting Mrs Thatcher about 18 months ago. She was as formidable as
I had hoped!
I am also inspired by Paige Allan who became a quadruple amputee when she was barely one. She
is nearly four now. I love the fact that she doesn't see herself as different or lesser and
that she tries to do everything which her siblings do and believes she can. At four she has
not imposed any boundaries on herself.
I find her zest for life and the fact that she is up for everything infectious and totally inspiring.
Accept it first and then look at it as a challenge and, if you can, as an opportunity. The fact is that change happens and there is no point in looking backwards, having regrets and comparing how it was with how it is now.
That's irrelevant to the future and unlikely to make you happy. Concentrating on how to make the best of today and planning for tomorrow is much more constructive and will very quickly make you feel better than dwelling in the past and thinking about what it used to be like and what you have lost. That's not to say it will be easy.
It might be incredibly difficult to face up to new circumstances but the harder it is, the more you will be tested and stretched, the more you will learn about yourself and life and the more you will have to offer other people.
Project a few years down the line when you will be looking back at where you are now and think about how you would like to see yourself coping. The other important thing is to take it one step at a time and not to expect too much too quickly.
I am all for big visions and challenging goals and always keeping them in sight but especially at a time of change or other difficulty such as a loss of a loved one, just focusing on the day ahead or on achieving today's small goal is an effective way to stay positive and not to be overwhelmed by the mountain you may have to climb.
I have described above two of the ways in which I kept going through my rehabilitation but it was by default rather than by my own design. What I mean is that I didn't make conscious decisions to tackle the situation that way.
It was a combination of a self preservation instinct and the fact that I was very well handled by my family and friends, by the medical profession and by the allied health professions. Everyone maintained a very positive and forward looking outlook and concentrated on and noticed and praised my little achievements.
One of the best things about the people I interviewed for The Day I Didn't Die is that
they were all very different people and they all reacted to their close shaves in different
ways.
The common characteristic, if I look for one, is resilience. They were all emotionally and psychologically
pretty tough. I do wonder if that has anything to do with the fact that they did all survive
- and are prepared to talk about what happened to them.
Jamie Andrew's (mountaineer and quadruple amputee) story moved me the most - probably because
I know him personally and because he has been such a huge support to me.
The parts of his story which take my breath away are the facts that he watched his friend die
beside him, that he "knew" for some considerable period of time that he was about
to die and stared death in the face and that he subsequently had to consciously contemplate
the loss of his hands and feet. I had it easy compared with him!
I believe very strongly that there is "more" in all of us than we guess. People are stretched by challenges. Nobody knows what they are capable of until they try. Sometimes life throws challenges into our paths and we have no choice other than to deal with them and many people are surprised by how well they cope with adversity.
"It was the making of her" is not an uncommon expression about
someone who has been through a challenging experience. This is one of the most powerful lessons
I have learned from my own experiences.
I would like to be able to ride on the confidence which this "truth ought to give us all
and use it to push myself and others to voluntarily choose challenges which take us out of our
comfort zones and stretch us to achieve our full potential.
That's not to say that I don't think the people I interviewed
were special but I think the "specialness"
is in perhaps in their humble, grateful and positive
reactions to having survived rather than in the fact
that they did survive.
Meningococcal disease is extremely difficult to distinguish from a virus or flu almost until
it is too late. Without trying to encourage an overreaction to everyday minor symptoms, I would
advise people to keep the possibility of this illness at the back of their minds at all times
so that they are always alive to the possibility that this is what might be wrong.
It is unrealistic to expect people to be word perfect on the signs and symptoms but it is only
sensible for people to equip themselves with a general idea of the kind of clues they are looking
for and I think it is essential to keep a means of checking the signs and symptoms in a readily
accessible place.
That way, people are more likely to be ready to respond appropriately and quickly if the disease
does develop. The rate of deterioration is one of the main clues of meningococcal disease. "Every
second counts" is one of the messages which cannot be emphasised enough. That is just one
of the reasons why I think it is very important that people do not rely wholly on the medical
profession to pick it up. A GP will only ever see a snap shot of an ill person's condition and
will not have the opportunity to monitor the illness over time.
Neither does a GP have the luxury of the ill person's own knowledge of their usual tolerances.
Where meningitis and septicaemia are concerned, I think people have to take more responsibility
for their own health and that of their children.
People should inform themselves about what to look out for and, armed with a little knowledge,
be ready to listen to their own instincts about whether or not there is something seriously
wrong.
I would say very emphatically - don't let it define you. Be who you are first. I greatly admire David Murray because when people talk about him, the fact that he has no legs is rarely mentioned. Many people do not even know that he is disabled. He is thought of first and foremost as the Chairman of Rangers Football Club and a very successful self-made business man. Nobody would dream of saying that he has done very well for a disabled person.
Obviously disabled people have to work out and accept the limitations imposed by the reality of their disabilities but once you have maximised your functionality don't limit your horizons - or allow anyone else to limit them - any further than is necessary.
People see and notice disability because it represents difference but your own positive attitude to you will go a long way to helping other people to see the person beyond the disability.
I feel sorry for her. Now that I have a fuller understanding of the disease,
its rarity in people my age and how difficult it is to distinguish from flu and
viruses, I don't blame her for failing to diagnose meningococcal septicaemia.
I believe that many technically competent doctors would have missed the diagnosis.
However I will always bear grudge against her for her failure of a more old fashioned kind:
a failure of empathy and a failure to listen. There was no excuse for her harsh unfeeling manner
and the fact that she didn't hear my cry for help.
I will always wonder if someone with better listening skills who had tried harder to engage
with me would not have picked up my own alarm at how ill I felt and/or pushed me further to
describe my symptoms.
I think that GPs are in an unenviable position. If they get it right they are only doing their
job and if they miss something, they too have to live with the consequences. They are only human
and not infallible. Members of the public have to remember that and take some of the power and
decision making back into their own hands.
I think an appointment with a GP should always be a dialogue. We have moved away from the days
where it was accepted that "doctor knows best". Patients should be willing and free
to put their point of view and voice their concerns and doctors should be prepared to listen
and accept that the patient himself holds all the clues to his condition.
My constant stream of visitors kept my spirits high. It made me feel that people cared about me. I would say that if anyone ever wonders if it is really worth bothering to make the effort to go and see someone in hospital - the answer is usually yes.
As for how to treat a seriously ill or disfigured person, I would say, concentrate very hard on looking at and dealing with the person as you always did. Whether it is conscious or not, I think that a person who knows they are seriously ill or disfigured will be alert to (if not actually searching for) any signs and reflections in your face, eyes and manner about how they seem to you.
They are no different inside and so they are likely to interpret any change in your attitude to them negatively. I loved the fact that my now husband was as cheeky and "challenging" as he always was and didn't suddenly molly coddle me!
In every possible way! Every single day that I am
alive on this planet is a bonus. I had a great life
before I was ill but I didn't realise it. Now, although
what I have is, in many ways, less, I appreciate what
I do have more. I would never have wished the fate I
have suffered on myself but, as I said at the start,
change happens.
You might call this particular change very bad luck - but there have been so many silver linings
and I have no idea what my life might have been like if meningococcal septicaemia had not struck.
It might have been worse. The fact is that I will never know.
This is life I have and I am very grateful for it.
For signs and symptoms of meningitis and septicaemia, please refer to www.meningitis-trust.org or www.meningitis.org.
