I want to behave as much as possible as my illness didn't exist. Try not to think about it too much. I don't know how long it's been there and my life has always been normal. I need to stay healthy and relax as much as I can. Other than that, luckily I can do whatever I want.
Notes for tomorrow:
record my my mum and dad memories and maybe work on a book.
work with children
train in nlp or psychoteraphy
Monday 10 January 2011
Tom Lubbock
Candid and terrifying http://www.guardian.co.uk/books/2010/nov/07/tom-lubbock-brain-tumour-language
Sunday 9 January 2011
analise this
List of stresses in the past 18 months:
Without this illness, maybe I would have gone on living a life of quiet desperation for years, without changing anything
My body is being constructive, even in this illness. This for me may be the last opportunity to achieve emotional growth
I feel my body and my mind have been preparing for this for quite a while. I think there is a reason for all this, a quirk of destiny to give me a new chance in life
What did I get from being ill in the past :
- Stopping smoking
- Trying to break the silly cycle of alcohol and drugs
- worrying about my weight
- questioning my job and career, feeling fed up about work
- adjusting to a long term relationship and leraning to be really myself with my boyfriend
- Moving home, dealing with financial stuff, feeling inadequate as an adult in an adult world
- The tumour
- my future
- my parents
- Facing the operation or else
- Afraid of what the 'else' might entail.
- I always felt different from other people and as a consequence I have spent too long wanting to be liked
- I took drink and drugs to feel funnierm more entertaing, more confident
- I lied to friends and family about my life, my other friendships, my habits, my past: because I felt different I was afraid to be misunderstood, so I was presenting another face to everyone accordingly
- I always felt different from the picture perfect girl my parents wanted or thought they had. I always felt the real me would have been a disappointment to them
- Because I desperately wanted to be liked I aways strived to be slim, beatuful, cool, even if it meant hurting myself
- I hurt myself when throwing up after dinner
- I hurt myself when going out and drinking even though I feel exhausted
- I hurt myself every time I said yes when really what I wanted was to say no
- I have spent most of my life not being myself, but desperately trying to fulfill the expectations other people had of me....really little sense of self worth
- Explore and assert my self worth
- Imagining and starting to creat a future for myself that really reflects what I want from life
- Spending quality time with my boyfriend, my friends and my family making sure I am always listening to my needs and making them clear to them.
- Avoid the stress and tension that sometimes may come from them without feeling guilty or selfish
- learn to say no a bit more
- Talk about my feelings of fear to people if I need to
- Tell myself lots of people love me for who I am. I am a shining jewel at yhe center of a beautiful lotus
- No one is ordering me to be nice or lovely, be mean if I need to or feel like it!
- Break the rules that do not conduct to my health
- Congratulate myself everyday for all these changes I am making
Without this illness, maybe I would have gone on living a life of quiet desperation for years, without changing anything
My body is being constructive, even in this illness. This for me may be the last opportunity to achieve emotional growth
I feel my body and my mind have been preparing for this for quite a while. I think there is a reason for all this, a quirk of destiny to give me a new chance in life
What did I get from being ill in the past :
- When I was at school sometimes I faked being ill. I wanted to stay home, pampered by mum, feeling protected
- When I got ill I didn't get told what to do, I got all the attention and I could make time for myself...complete freedom of choice, living in peace, being able to stayin bed reading and watching tv: i look for the same type of 'refuge' nowadays, when I get home sick of everything and everyone
- Too often I was made to do things I didn't feel like and didn't want to do. ...can the illness be a way to change my life and make my choices accepable to myself and my family? Does the illness allow me to express fears and feelings I would not normally feel entitled to express?
- Quit all my excesses and be healthy - I CAN DO IT
- Getting the chance to read, chill and meditate - JUST NEED TO SAY TO PEOPLE THIS IS WHAT I NEED
- Leaving my job - AND IF IT'S RISKY OR I DISSAPOINT SOMEONE; WELL SCREW THEM
- Realise what I really want to do - HAVE A JOB WHICH INVOLVES HELPING OTHERS
- Marry who I want without my family moaning - AND IF THEY DO, SCREW THEM
- Being given space by my boyfriend and friends - IT'S ABOUT ME LEARNING TO SAY WHAT I NEED
- Realise how much people really love me - IT'S RIGHT IN FRONT OF MY EYES.
Good days, bad evenings
Sitting on my sofa after dinner, I am having the first truly awful moment of the weekend.
I had a lovely time both yesterday and today: going for walks in nature, seeing friends, eating good food. All the time feeling powerful, in control, knowing that I am cracking somehow the secret of how to keep myself alive.
But the monster of anguish is always around the corner. Fear starts building in the stomach and it is difficult to dissolve that knot gripping you, to unravel the emotion and out it away, until next time, until the next moment of weakness.
One hug, a few jokes later, I am well again...after all, today I ate the best burger in the world and in a charity shop in highgate I found a Carles and Diana commemorative mug for 2 quid! I am contemplating going to the garlic festival in June with friendsd, my boyfriend is marvellous, my friends unique, my parents adorable
Be strong, cheer up, it will all be well, just believe it
I had a lovely time both yesterday and today: going for walks in nature, seeing friends, eating good food. All the time feeling powerful, in control, knowing that I am cracking somehow the secret of how to keep myself alive.
But the monster of anguish is always around the corner. Fear starts building in the stomach and it is difficult to dissolve that knot gripping you, to unravel the emotion and out it away, until next time, until the next moment of weakness.
One hug, a few jokes later, I am well again...after all, today I ate the best burger in the world and in a charity shop in highgate I found a Carles and Diana commemorative mug for 2 quid! I am contemplating going to the garlic festival in June with friendsd, my boyfriend is marvellous, my friends unique, my parents adorable
Be strong, cheer up, it will all be well, just believe it
Friday 7 January 2011
meditation commitments prove very adaptable
just had a 20 mins session in the loo at work...I think in a few days my colleagues are gonna start thinking something is seriously wrong with my bowels!!! off to the west end to get a digital recorder...wana try to record my own meditation guides to follow, i think they will aide concentration
Meditation routine and discipline
Three times a day:
The Sun became full of light when it got hold of itself
Angels began shining only when they achieved discipline
The sun goes out whenever the cloud of not-praising comes.
The moment the foolish angel felt insolent, he heard the door close
Rumi
Three times a day, three times a day, three times a day.....
- Find a quiet space with a comfy chair and dim light.
- Sit down, feet touching the ground.
- Connect with the cosmic light - God, the angels above, whatever - and the earth below
- Concentrate on my breathing and repeat a few times Relax, relax, relax...
- Focus on my eyes and face and relax them. Picture a knot untying, the melting away. Feel this sense of relaxation spread througout the rest of the body.
- Tense the muscles around the face and eyes, squeeze, then relax and feel the wave of relaxation again through the body.
- Repeat the process with jaw, neck, shoulders, back, upper and lower arm, hands, chest, abdomen, thighs, calves, ankles and feet.
- Picture myself in a beatuful place I know. Think of its colours, the smells, the sounds and stay there for two or three minutes.
- From there start picturing my tumour. Its cells are weak and confused. The body normally destroys such cells countless times during a lifetime. My recovery requires my body's defense system to return to a normal, healthy, state
- An army of my own white blood cells comes to the left side of my brain, recognises the tumour cells, all dark and manky and starts destroying them. My white blood cells are strong, glistening and white like marble knights. They know what to do. They win the battle.
- My tumour starts shrinking. This colony of manky cells is quickly being annihilated, dead and prisoners being carried away by my white knights and flushed away from my body, tuned into piss and shit.
- The tumour will shrink until it's gone. I will win
- I will surprise everyone with my recovery
- I will have shown what you can do with your mind and your body at the best of their strenght and potential.
- I will be free from worry again
- My family, my boyfriend and my friends will be relieved and we will start living the future together. Holidays, a new home, kids, a job that rewards me.
- I will be full of energy and my life and relationships will be more meaningful.
- These are the priorities in my life.
- I am doing so well, participating in my recovery in this way, guiding my white knights.
- I will do this three times a day until I am cured and will use again for other illnesses.
- I am winning
The Sun became full of light when it got hold of itself
Angels began shining only when they achieved discipline
The sun goes out whenever the cloud of not-praising comes.
The moment the foolish angel felt insolent, he heard the door close
Rumi
Three times a day, three times a day, three times a day.....
the Facts
Ok,
here are the facts: the tumour which is keeping me company for the time being is a glioma. Probably low grade. It measures about 3cm x 3.5cm and it looks slightly like a flying saucer. It is in the supplemental motor area, left side of the brain, on the top. It's the area responsible for speech. Ironic. Speech. Me. I am a journalist and my first language is Italian. Articulate is one of the words people often use to describe me.
I realised I have it because I get these episodes of speech arrest, in which for a minute or so I want to speak but can't. I look to the right and slightly raise my right hand. I never lost consciousness and never had a fit, but now I am on anticonvulsant medication, just like epileptics, because it might get worse.
The first episode was in May. I was in my office and a friend stopped by. She complimented me on something I was wearing and I wanted to tell her where I bought it but realised I couldn't. I started laughing and went on for a minute or more. Never had the laugh again, but the same feeling reoccurs every time I have some strongly emotional experience or moment, or at some times of the month which coincide with my cycle.
Now if they operate they might obliterate forever my ability to express myself. Not just to speak, but to write and form concepts in my head that can be communicated to people. In order not to do so, they will have to operate on me while in an awake state. They will use anaesthetic to practice and opening in my skull, then they will wake me and talk to me through the entire procedure to make sure they are not touching and removing anything essential from a functional point of view. Yes. we use only part of our brain, so apparently you can remove bits and pieces here and there without causing permanent damage. And it won't hurt because the brain can't feel pain. Weird and terrifying, but it gives me hope. I am currently 'shopping' for the best neurosurgeon specialised in this field, and for now I am waiting to meet Andrew McEvoy in the UK and Lorenzo Bello in Italy.
Of course the other option is to just observe the tumour and wait. If it doesn't grow too much, I might live for another 10 or 15 years without adverse effects. I might even manage to fight it myself, with my mind and will power. It can happen. But as things stand now, and I might be a bit too panicky and impatient, I just can't wait for this guest to leave my head.
here are the facts: the tumour which is keeping me company for the time being is a glioma. Probably low grade. It measures about 3cm x 3.5cm and it looks slightly like a flying saucer. It is in the supplemental motor area, left side of the brain, on the top. It's the area responsible for speech. Ironic. Speech. Me. I am a journalist and my first language is Italian. Articulate is one of the words people often use to describe me.
I realised I have it because I get these episodes of speech arrest, in which for a minute or so I want to speak but can't. I look to the right and slightly raise my right hand. I never lost consciousness and never had a fit, but now I am on anticonvulsant medication, just like epileptics, because it might get worse.
The first episode was in May. I was in my office and a friend stopped by. She complimented me on something I was wearing and I wanted to tell her where I bought it but realised I couldn't. I started laughing and went on for a minute or more. Never had the laugh again, but the same feeling reoccurs every time I have some strongly emotional experience or moment, or at some times of the month which coincide with my cycle.
Now if they operate they might obliterate forever my ability to express myself. Not just to speak, but to write and form concepts in my head that can be communicated to people. In order not to do so, they will have to operate on me while in an awake state. They will use anaesthetic to practice and opening in my skull, then they will wake me and talk to me through the entire procedure to make sure they are not touching and removing anything essential from a functional point of view. Yes. we use only part of our brain, so apparently you can remove bits and pieces here and there without causing permanent damage. And it won't hurt because the brain can't feel pain. Weird and terrifying, but it gives me hope. I am currently 'shopping' for the best neurosurgeon specialised in this field, and for now I am waiting to meet Andrew McEvoy in the UK and Lorenzo Bello in Italy.
Of course the other option is to just observe the tumour and wait. If it doesn't grow too much, I might live for another 10 or 15 years without adverse effects. I might even manage to fight it myself, with my mind and will power. It can happen. But as things stand now, and I might be a bit too panicky and impatient, I just can't wait for this guest to leave my head.
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