RIP Mandela

I felt that I could not let today pass without adding my contribution to the billions of message flooding the worlds media about Nelson Mandela. Where to even start is a minefield, nigh on impossible to say something original so I won’t try. Put as simply as I can, this is what Nelson Mandela or Madiba, means to me. Whether or not it is true or reflects the reality of the situation on the ground in South Africa now. I do not know, I suspect it’s not the case, I know there’s much still to do, but it is what I hope and what I remember.

Madiba

Several years ago I was lucky enough to spend some time living and working in South Africa. There I met many people who had worked alongside Mandela to end Apartheid. Ordinary people who had been in prison with him, people who had suffered. People who had been abused, degraded and mocked for their support of him. Their stories appalled and shamed me more than I could have imagined.

fear

However, all of that pales into insignificance when I experienced, saw, heard and felt the  forgiveness with which the people I met spoke about that time. Their efforts at forgiveness overwhelmed me, shocked, stunned and remains imprinted on me to this moment. It is not an overstatement to say it was life-changing.

free

Forgiveness, I learnt is the ULTIMATE act of choosing love. Forgiveness not just of others but of self too. Mandela knew that, he lead by example and for me he therefore became a beacon of light in the art of choosing love, he was and still is King of ‘Love Choosing’.

freedom

I feel totally blessed to have shared my time earthside with a human being like him, without his promotion of forgiveness who knows where we might be today, perhaps I wouldn’t be able to be married to a black man, as I am, who knows? One Love. Madiba RIP. I hope your memory inspires more people to Choose Love today.

Choose Love

 

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Path finding

A theme I have noticed recently emerging on this path I am treading is the idea of self belief, conviction and confidence. Without noticing it I embarked on this journey, naievely assuming  much of my life would remain the same. Most notably I expected my relationships to remain the same… the truth, I am discovering is quite different.

wisdom

I have been very blessed to come from a strong, connected, loving family. In my times of crisis, particularly health-crisis they have been my guiding compass my rock, my security and certainty. When I couldn’t face resaearching another Doctor, another hospital, they did it for me. When I felt something, anything, they have held my hand, supported and encouraged me.

Family support

Family support

I realise now many of the hardest decisions about my health, such as which drugs to take were ultimately joint decisions. Always taken with love and without patronisation but never soley mine. Now, (finally… at nearly 30 years old…!) the decisions I am having to make about my health are soley mine and not everyone believes/agrees/is interested in them and I have to LET THIS GO. This has been an exhausting realisation which I hope will become an empowering one.

Letting go

Letting go

Growing up in England, it is ingrained in (most of) us that it is not the done thing to talk about yourself and you CERTAINLY, NEVER praise yourself. You ask others about themselves, you praise them and you ask for their oppinions, that is what good-polite-british-kids do……… This is what I did/do. I realise that this has left me in the riddiculous position of needing to ‘check’ that what I am doing is OK? Now what I am doing is not OK with some but I believe in it. Therefore I am learning that instead of saying ‘I’m not too bad thank-you, today’s better, what lovely weather, anyway enough of me HOW ARE YOU?’ I am saying ‘ Today might not be good. But yesterday was GREAT, AMZING WONDERFUL. I AM A SUPER AWESOME WOMAN and if you don’t agree jog-on!’

SGP YES

I am learning to let-go of the need for approval. To stick my own head above the parapet. Look over, stand up shout ‘HELLO! This is me! I believe in stress-related chronic pain! I AM EPIC be my friend if you’d like but I don’t mind if you don’t’! Believe me this is a scary-ass thing to do and is changing everything in my life. Positively I hope. I have always been inspired by Mandela quoting Marianne Williamson:

“Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won’t feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It’s not just in some of us; it’s in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.”

I have stuck this quote by the front door of every place I’ve live over the last 10years, but until this journey I don’t think I’d fully understood it. Sometimes, letting our light shine means finding the courage to follow our own paths, even when those paths lead away from those we love. Just because you are on different paths doesn’t mean the love no longer exists it is just growing and changing just as the human body grows and changes daily. I am proud that I am learning to do this. I think that makes me pretty awesome and courageous. One Love path finders.

Path

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Un-learning fear

Madiba deepest fearI was first introduced to this quote by one of my teachers at Bryanston School. In retrospect I think she was probably an alcoholic. I remember she smelt of alcohol at breakfast time and looked as if she had slept in her clothes. I think she was an English teacher, but I’m not sure and I’m sorry to say I can’t remember her name at all. Despite this, she is a teacher I will always remember with thanks and admiration. It is not an exaggeration to say that this quote changed my life and I may never have found it without her.

I went to Bryanston, at the age of 15 and I was there for less than a term. I remember being in awe of the school, the Arts facilities were/are jaw-dropping, I’d never seen anything like it. I was so excited when I got in, I thought it was going to be a whole new start. Well it was, sort of…in-between accepting my place and actually starting the school I was diagnosed with Epilepsy. With encouragement from my family, I decided to still go ahead and start at Bryanston. It was a much bigger challenge than I anticipated, my medication was not settled, I didn’t really know what epilepsy was and I started to have panic attacks. I was assigned to this teacher I think as a sort of ‘pastoral-mentor’. I remember thinking that she liked me, I think she did. We were sitting on these leather sofa’s in the school’s hall and she handed me this quote scruffily printed on blue paper. I read and re-read it, I couldn’t put it down. Shortly after this however, I became too ill to continue at Bryanston. Looking back it amazes me that I didn’t know that from the moment I left that school I’d been set on a course in which my epilepsy challenged every academic and professional choice I was to make.

The exact seats we sat on

The exact seats we sat on

I have since hand-written Mandela’s quote and carried it with me to every place I’ve ever lived. I stick it up with blue-tack by the front door so I am reminded of it regularly. I have learnt it by heart and try to meditate on it often. Knowing it once saved my skin, when I was asked to make an impromptu speech to an educational convention in South Africa. Reciting it got me a standing ovation, the memory of which still makes my spine tingle! I recently learnt that Mandela was in-fact quoting Marianne Williamson, I think she is equally wonderful and this knowledge does not alter the immense wisdom in those words for me at all.

I had cause to think of it a lot yesterday. It seems however hard I try not to let the health of my earthly body define me, it does and feels like it always will, to some at least. Whilst it is undeniable that my spinal injury has in some respects affected my life at the moment the most, in that I can’t move easily. Having epilepsy has not only changed the course of my life, but ultimately changes people’s opinion of me (even if they say it doesn’t I no longer believe them). I have noticed that when people learn I have a spinal injury they are usually sympathetic and say things like ‘get well soon’. But when they learn I have epilepsy there is either a) a deathly silence, which I feel the need to make light of (I fit with only the best…etc!) or b) an exclamation of ‘how interesting’? and then silence….if and when this happens in a work-related environment this is then followed by an ‘oh ummm sorry could you just fill this in you know so we can ummm err keep you safe’………… These forms are pretty horrible things to me, the people who produce them have no idea the impact they have.

This bureaucratic question which often features particularly challenges me:

‘Do you consider yourself to have a disability? Y/N’ Well my answer is N. No, but I realise that if you read the UK governments definition of disability then I fit into that box neatly, several times over. As my uni-registration wonderfully, emotionlessly read : Lucy has multiple-dissabilities. I made a joke of that, I told anyone and everyone who’d listen. I now think it’s a pretty despicable label to automatically give someone and my heart aches.

Writing this is cathartic, but challenging too. I woke up at 5am today, unable to sleep after being given one of these forms yesterday. It asked for detailed medical history, next of kin, Dr’s details, descriptions of seizures, warning signs. It appeared out of the blue. I was told I could not move forward on a course without it.  It made no mention of confidentiality or why it was needed. I have learnt, over many painful years why it is needed….I believe forms like this are not needed ‘to keep me safe’, neither are they designed to be cruel. Forms like this are made of pure fear and ignorance. They make me feel like a freak, like people are afraid of me and that I have done something terribly wrong and need to justify myself. It makes my stomach churn and my eyes weep. We have developed a culture that people are so terrified that they will be sued etc for failing to ‘keep someone safe’ that they have designed this paperwork to protect themselves. Common sense, care and kindness are all forgotten.

Part of my frustration is that handled with common sense and kindness, these procedures, if we must have them, do not need to be so traumatic for individuals like me. Out of my four or so attempts at a ‘real career’ only one employer has made me truly welcome and not made a fuss about disabilities. They did this simply by:

  1. Reading my medical form. Properly. Remembering it.
  2. Scheduling a brief informal, private meeting with me
  3. Telling me they’d read my medical chart, going through it with me BRIEFLY.
  4. Asking if there was anything they could do to help me in the workplace.
  5. Telling me they had a 24/7 open-door-policy and to come to them if anything concerned me about the way they handled anything- they want their employees to be well and happy
  6. Telling me they saw no reason why it would affect my ability to do the job as well as anyone else. Believing in me.
  7. Not bringing it up again. They read the form properly once, they don’t need to again.

Such simple things, only encountered once. If these things were done everywhere, alot of stress and even court-cases could be avoided. How can that be the way the world works? Why in the C21st does such fear of dissability persist? I might not be normal but who is?! Why does anyone need to know if I consider myself to be disabled? Who does that help? You or me?

If I am blessed enough to one day have children I hope that they will find a world where people simply see them as people and not as a labelled condition which they may or may not have.

MW on love

Lets’ unlearn fear

This has been a rather heavy blog, I feel worn out and exhausted so here are some things to lighten your day! One Love.

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My Top Ten Strangers

Today, due to the ongoing slipped discs in my back I have mostly been doing this punctuated by an excruciating walk to the GP for prescriptions, (what a thrill):

In my mind however I am doing this:  Spot the difference!

Kite girls

credit: Miami Kites

I therefore decided that this would be a great day to celebrate my all time Top Ten Awesome People I have never met!

In no particular order of Awesomeness:

At number one His massive-off-the-scale-awesomeness: Nelson Mandela / Madiba. An incredible human being, beloved by a nation and by most of the world, I have no words to describe the impact learning about him had on me. I was lucky enough to work in South Africa for a while and will never forget the standing ovation and deafening applause I got from quoting him in a speech about girls education. This is that quote which I still meditate on daily.

“Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won’t feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It’s not just in some of us; it’s in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.” I recently learnt from an inspirational blogger (The Progressive Parent) that Mandela was infact quoting Marianne Williamson.

No. 2: Layne Beachley SEVEN times world surfing champion. In a male dominated and frequently outright sexist sport Layne is a surfer I’ve watched with awe. Unlike the Kelly Slaters of this world (unworthy of even a hyperlink in my oppinion!) women like Layne have to work twice as hard to be allowed to achieve the same success.

“There are so many people out there who will tell you that you can’t. What you’ve got to do is turn around and say,’I can. Watch me.”

No. 3: Ellen MacArtur The fastest person to circumnavigate the globe single-handed (in 2005)and she is a SHE! I  love sailing but I’m not very good at being alone and whilst the sea is magical to me I have huge respect for it’s power and I can’t begin to imagine the challenges she faced, alone out in the deep. Her book ‘Taking on the World‘ totally gripped me. I found in it, like with so many sea faring tales, a deeper more profound understanding of  how humanities own story is inexplicably intertwined with the oceans and wisdom gleaned from it is relevant even to a landlubber like me. Ellen’s words stay with me when I feel like my ailments are swirling around the tiny vessel that is my earthly body:

-“When I was out there I was never ever alone, there was always a team of people behind me, in mind if not in body”

-“Courage is not having the energy to go on, it’s going on when you do not have the energy…”
-“You don’t fear for your life in the middle of a storm, you can’t really afford to”

 No. 4: Patch Adams Reading this man’s autobigraphy puts a lump in my throat and an ache in my heart. To me he symbolises hope, compassion, love and common sense. In the course of my life I have so far seen a great many Doctors in many different hospitals around the UK for a variety of different afflictions, not least for my epilepsy. So many infact that I want to make this topic ‘My search for a Doctor’ a separate post entirely. All those Doctors, specialising in a myriad of medical disciplines, largely trained in the West, some ‘good’ and some less so, all, every single one of them have one unifying fact in common. This fact is that they see the human body as being made up of distinct sections and they all specialise in their own very specific sections. They do not study the other sections and do not consider the possibility that these sections interact. According to these doctors not only do these fleshy-biological-humanoid sections have no relationship to each other they also exist in isolation to their community and environment. To me, this attitude at the heart of so much western medicine seems fundamentally flawed and totally non-sensical.

Dr. Patch Adams is pioneering holistic medical care based on the belief that one cannot separate the health of the individual from the health of the family, the community, the world, and the health care system itself. His model is organized around these extremly simple principles which are totally lacking in any hospital I’ve ever been in:

  • Care is free.
  • Patients are treated as friends.
  • Ample time is given to the care interaction (e.g. initial interviews with patients are 3 hours long).
  • All complementary medicine is welcomed.
  • The health of the staff is as important as the health of the patients.
  • Care is infused with fun and play.

It is one of my most despearte and feverent hopes that this type of thinking will become a global standard in my lifetime.

“The purpose of a doctor or any human in general should not be to simply delay the death of the patient, but to increase the person’s quality of life. ”

 No. 5: Tenzin Gyatso, 14th Dalai Lama Probably features on alot of ‘Top Ten’s’ but I felt that I can’t really leave him out as our home is festooned with more of his quotes than any other. Although I am Christian by culture, many other faiths, particularly Buddhism speak strongly to me and the Dalai Lama’s personal story is also about as inspiring as stories come!

-Happiness is not something ready-made. It comes from your own actions.

-If you can, help others; if you cannot do that, at least do not harm them.

– If you want others to be happy, practice compassion. If you want to be happy, practice compassion.

– My religion is very simple. My religion is kindness.

– Remember that not getting what you want is sometimes a wonderful stroke of luck.

No. 6: Dan Eldon artist, activist, adventurer (1970-1993) My Mum gave me ‘The Journey is The Destination‘ when I was doing my GCSE Art. It totally BLEW MY MIND. MAAAAN! By that age I had already visited Kenya several times, fallen in love with the country, the people and of course, the elephants. I spent hours looking at his sketch books, drinking them in and researching the young man, only a few years older than me who had made them and then lost his life so suddenly and brutally. Dan Eldon taught me that creativity heals, that being creative does not have to be a scheduled thing. The idea that ‘Now it is the Art Lesson. We must do ‘Art’ and use our creativity’ is completly wrong. Creativity infuses daily life and I need not look further than my window for inspiration, great and powerful artistic opportunities are there for us all if we only reach out and take them. Dan Eldon’s books helped me to reach out and realise that ‘The Journey is The Destination‘, every journey, be it the journey of happiness or even health. The Journey itself is the true destination and therefore we should strive to embrace the wonderful array of journeys we find ourselves on now.

No. 7: Laird Hamilton A fellow Pisces, water lover and there our similarities come to an abrupt end! Surfer and big wave rider. ‘big’ seems like puny weakling of a word to describe the gigantic moving water mountains that Hamilton rides. One human being’s ability to survive, against the odds on some of the Goddesses wildest creations amazes and inspires me. Hamilton along with the likes of Gerry Lopez are the kind of surfers I can watch, in jaw-dropping-stunned-awe for hours on end. They illustrate why surfing is like no other sport, that there is a deeper more spirtiual side to it whether it be in Lopez statement, (on towing into Peahi/Jaws) “Okay, shit, I guess this is a good day to die!” or Hamilton trying to explain what surfing really is… “For those searching for something more than just the norm. We lay it all down, including what others call sanity, for just a few moments on waves larger than life. We do this because we know there is still something greater than all of us. Something that inspires us spiritually. We start going down hill, when we stop taking risks.” These men, these surfers, remind me to live in the moment, because afterall, the moment is all there really is.

No. 8: Betty Williams. An ordinary woman and co recipient of the Nobel Peace Prize. On my list after I saw her speaking on TV at a youth rally in Canada in 2009. She is here because of he ordinaryness, a mum, a receptionist interested in gardening and dressmaking and founder of  the World Centers of Compassion for Children International, in honour of His Holiness the Dalai Lama! She has travelled the globe recording the testimonies of children who have been subjected to horrors beyond belief and has dedicated her life to developing a new paradigm within global cultures and governments that embrace, nurture, and empower children with a compassionate world view.

Women are strong enough to help the men to understand. They are the givers of life and they must now protect life’.

No. 9: Dame Jane Goodall DBE, is a mother, grandmother, a British primatologist, ethologist, anthropologist, and UN Messenger of Peace. She carries an aura of Peace whenever I’ve heard her talk and a feminine strength and passion for the earth and its creatures that is almost tangible. I would love to meet her and hear some of her wisdom first hand.

‘People say to me so often, ‘Jane how can you be so peaceful when everywhere around you people want books signed, people are asking questions and yet you seem peaceful,’ and I always answer that it is the peace of the forest that I carry inside.’

and last but by no means least! No. 10: Richard Leakey politician, paleoanthropologist and conservationist. If photo’s speak a thousand words then this one does to me:

In 1989, Richard Leakey burnt a pyre of elephant tusks to confirm the Kenya Wildlife Service’s commitment to a ban on ivory. image credit: Andrew Holbrooke/Corbis

This act caught the attention of world media more than many had previously thought possible and Leakey made great progress protecting Elephants in Kenya. However, there is much still do. Leakey spearheaded a campaign and reform that benefitted, Elephants, Kenyans and the world.

‘Earlier 100,000 elephants lived in Kenya and we didn’t have any noteworthy problem with it. The problem that we have is not that there are now more elephants’.

So there it is my top ten awesomest strangers! Whilst I lie here I wonder what they are all doing right now? If they ever have grey horizontal days too? I suspect they do, but I also hope that like me they are kitesurfing in thier minds on those days too!

 

 

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