Yesterday I had tea with a couple of girlfriends in the afternoon – unfortunately I didn’t have a camera with me. In retrospect this spectacle would have made an excellent photo?!  (This is a photo from last year) It was early afternoon and I was still in my dressing gown. I had been working all day but…  Many of you will recognize the temptation and downfall of working at home!  Or is it just flexibility?  Writing, talking to friends, throwing in a load of laundry. Anyway, back to the story…

Three of my best fun girlfriends arrived, one of them covered in mud, having just fallen down a mountain!  Within minutes she had had a shower and we were sitting together in our dressing gowns, hair in towel turbans, drinking tea while her clothes washed and dried. We got to talking…

One of my friends is baldylocks -  who,despite leukemia and a bone marrow transplant,  kicked ass (and didn’t fall) climbing the mountain! We were talking about her experience last week in Vancouver at a show which included one of her brilliant ‘cancer’ photographs. She was able to attend the exhibition, give an interview or two and even show off her new hula-hooping skills – because of the friends (thanks Jamie and Ylva) who accompanied her and carried her bags and helped her rest when she needed etc.  With the permanent support of a partner, there would be no stopping her. As it is, there’s still no stopping her, but it’s not quite as much fun or easy.

Another friend is a fabulous realtor here in Victoria with an amazingly gifted artist and musician for a husband.  Who is quite unable to turn his extreme talent into ‘a living’ – $$.  Sure he can and does work. But not usually as an artist or musician. As a couple, they complement each other well and are learning to both shine.  His disabilities are invisible – in fact, technically, they don’t exist? But the fact is that together, with his wife, both he and she are brilliant and headed for great success. Alone he – they – would struggle. And it wouldn’t be such fun!

One of my friends (pictured in my mom’s living room above) is a young woman who has struggled – is struggling – with a condition that has meant that she has to really fight to have use of her legs and other muscles. On a daily basis. Despite horrible odds, she chose a  perfect branch of her passion (art and information) as a career – she’s a professional librarian.  Clever, realistic, excellent choices… Slowly, like climbing the mountain at the beginning of this story, life is steep and difficult and sometimes she gets covered in mud. She always gets up and reworks her strategy. But sometimes alone – and often without the laughter and the brilliant success she both deserves and could have.

Before my own injury – nearly a quarter of a century ago? – I was nothing short of a human dynamo! At least that’s how it seems now when I look back. I had a thriving business, working both on site (with craftsmen) and doing all the office related administration and accounting and planning new projects (with architect and engineer and accountant). I ran a large house (with help) and had 3 small sons (with a nanny) and managed to find time every week to ride go-carts with them and play on the beach. My mind now is every bit as inventive and motivated. My brain/body lags far behind where it was then – and I no longer have that level of help.

I see myself as a ladder with a rung or two missing?  And not just because of disability. In fact I think most of us are imperfect and have a few rungs missing?  No-one – or pretty much no-one – is 100% ‘together’. As part of a team – or a partnership – we can scale mountains. Alone we struggle and often – or usually? – don’t achieve the brilliance that’s ours?

Brilliance is often unbalanced?  And in almost everything, we accept that balance is king? (Or queen!)  Why don’t we learn that we are all brilliant?  Rather than learning to compete and trying to be ‘better’ or ‘prettier’ or ‘wittier’ or ‘cleverer’ than everyone else.  Why don’t we learn to collaborate more?  Now, in my grandson’s age 9 class at school, they are having ‘contests’ to see who’s the cleverest kid in the class?  That’s crazy and sad. We need to be learning, with all 26 children, how as a group they can produce brilliance.  Sharing the intellect of some kids, the sheer energy of others and the gentle loving nature of others. So they can all benefit. And learn true interdependence.

As a child I was always hearing of geniuses who can barely tie their own shoes? My favourite books were ‘The Famous Five’ where the central character’s uncle is the quintessential ‘nutty scientist’.  I’m always coming across talented and brilliant people who have difficulty organizing and carrying out a project so that it can be a financial success?  Or great artists, musicians, cyclists, martial artists, social activists or great thinkers working in a 7-Eleven.

Why?

As children – if we’re lucky – we’re loved unconditionally by our parents.  They see and encourage our strengths and tell us we’re brilliant.  And I believe that every single one of us have strengths. But we’re also socialized in our Western culture to be competitive. We – or least I didn’t – even consider that most of us need others in order to shine. I didn’t even consider that I might need to collaborate in order to truly shine?

Our individual light may be bright but as part of a group that light can focus and burn right through to success.

Before my injury I was able to find help to fill in my missing rungs – with a housekeeper, gardener and a nanny. After my injury I recovered as well as I did because of my partner. And my mother. And my sons. Sure I was very stubborn and determined. But without my partner I could never have climbed as high as I did. (And I don’t believe that he would ever have achieved the success he did without me either.) I still very much rely on – and appreciate – every single piece of ‘input’ and help from my friends and family.

For centuries men have filled in their missing rungs with a wife and perhaps an assistant or two.  When I have been away with any one of my girlfriends – disabled or not – we have achieved far, far more together than we could achieve alone. We have more fun. More great ideas. More success. We laugh about falling down in the mud, have tea, create a whole new business and part company just 2 hours later with shampoo-smelling hair,  clean clothes and fabulous achievements. As women, we are just learning about the amazing effect collaboration can have.

What would I like most in my lifetime? No more competition! I would like to finally achieve the success and peace I long for. And I would like for it to be collaborative. True collaboration! And I would love then to document it and spread the news… That we can all achieve what we long for. If we collaborate and share the gifts we have.

Good luck and have a great week!  Julie

What Is Existentialism?

Existentialism: A Beginner's Guide by Thomas Wartenberg

Existentialism poses a very difficult question for me? Or does it? After all, I am very comfortable with ‘opposites’ and welcome them into my life. I guess I also welcome this interesting mix as a Victoria counsellor?

Existentialists believe “We are born alone. And we die alone”.

This is one of their core beliefs. If I am to be classified by that belief alone, then I am definitely no existentialist? And yet, so much of what they stand for and believe touches me? I feel existentialist…

In my head I believe that, as Marshall Rosenberg of NVC (aka non violent or compassionate communication) fame says “We are born in relationship and this is how we live”. I guess we still die essentially alone?!

What I identify with in existentialism is a fierce need for autonomy. For me… And I guess the bottom line is that like every single one of us I am, despite whatever labels you may choose for me, a unique person with every need?

Am I a new breed of existentialist? Someone who thinks ‘relationship’ – not least of all with myself. Feels existentialist. And needs every single of of those precious needs I talk about with my clients? A sort of NVC existentialist with a twist of Imago and decorated with TOT?!

Existentialism For Dummies

Existentialism is a philosophical movement that came about in the late 19th century. It is not some abstract set of theoretical truths. Rather it is a no-nonsense philosophy that encourages you to take a hard look at your life and ask two essential questions:

1. Who am I?
2. How shall I live?

Existentialism’s goal is to awaken us from our slumber, have us grab life by the lapels and start living authentically.

Unfortunately, there is no particular school that offers a systematic account of existentialism. Its founders were fierce individualists who avoided labels, detested “isms,” and refused to be lumped into any group. (Yes!)

So there is no grand philosophical system here. Essentially, existentialism exists at the intersection of the essays of Friedrich Nietzsche and Jean-Paul Sartre, the novels of Albert Camus and Fyodor Dostoevsky, the religious writings of Soren Kierkegaard and Paul Tillich, and the plays of Harold Pinter and even William Shakespeare (particularly Hamlet and King Lear). Clearly, existentialism is older than the term itself.

Existentialism: A Beginner's Guide

The philosophy is based on six general themes:

1. Acceptance of the Absurd. Each of us drops unexpectedly into this world, in a universe where time — at least as we know it — has no beginning, no end and no pre-set meaning. It is an inexplicable mystery. This realization is hardly new, of course. Ecclesiastes kicks off with the words “Vanity, vanity, all is vanity. What does man gain from all his labor and toil here under the sun?” (Ecclesiastes 1:2-3). Existentialists believe that it’s only when you confront the fundamental absurdity of life that you begin to live honestly.

2. Personal Freedom. Life itself may be meaningless, but you give it meaning when you begin making important choices. These, in turn, reveal who you are. With freedom of choice, however, comes responsibility. Taking ownership of your decisions means not blaming your parents, your spouse, your teachers, or anyone else for the shape of your life. More responsibility brings greater freedom. And with it: hope. Everyone does the absolute best they can, with the tools that they have… (NVC)

3. Individualism. Existentialists are keenly aware that society continually pulls us toward conformity. There are immense social pressures to go along, get along, and live pretty much like everyone else. Existentialists challenge you to buck conventional wisdom, express your true nature, and follow your dream, whatever that may be.

4. Authenticity. Most people are so consumed by desire, guilt, fear, or anxiety about what other people think that they find it almost impossible to follow their true calling. However, it’s only when you begin to do what you want — and not what others expect — that you begin to live authentically. But expect resistance. Institutions want to mold you. Other people want you to go on their trip. It’s far easier to live unthinkingly as part of the crowd. Yet authentic individuals are in control of their own lives.

NVC - Language of Life by Marshall Rosenberg. Needs therapy...

5. Passion. Being passionate and engaged is crucial. This doesn’t mean acting crazy or hysterical. Quite the opposite, in fact. Existentialists believe you should devote yourself to a cause, one that you’re willing to organize your life around, perhaps even die for. For Kierkegaard, that passion was the pursuit of truth. For others, it may be artistic expression, healing the sick, or building a business that employs hundreds and serves thousands. In all walks of life, you’ll find that passionate men and women are more purposeful.

6. Acceptance of Death. Life is finite. Yet existentialists don’t see this as a reason for pessimism. Facing death is what forces you to take life seriously, use your time wisely, and make meaningful choices. It should invigorate your life.

Nietzsche, the philosopher most closely associated with existentialism, refers to it as the noble ideal. Your life, he argues, is an unwritten book that only you can write. Or, he says, visualize your life as a kind of artistic project, except that you are both the sculptor and the clay. This concept runs throughout existentialist works.
Kierkegaard says “to exist is an art.” Martin Heidegger counsels us to learn to “dwell poetically.” All existentialists agree that life has the meaning you choose to give it. Sartre even declared that man is “nothing else but what he makes of himself.” This view is fairly widespread in the West today. But it was once considered revolutionary.

The Catholic Church, for instance, decided that Sartre’s ideas were so dangerous that it placed his entire works on the Vatican Index of Prohibited Books — including those he hadn’t yet written! Ideas can indeed be explosive. And teaching that you should live your life on your own terms and make your own decisions and life choices, rather than according to the dictates of an institution was unthinkable. How could the Pope control his people if he was encouraging them to think and act according to their own hearts? Existentialism is often thought of as the philosophy of freedom…

The Living Matrix DVD - An Introduction to Our World

But what price does that freedom carry? Are you then tied to the beliefs of that dogma – the existentialist dogma? Or – as I hope and believe – is there no such thing? Is true existentialism truly free?

No matter how things stand in your life, you choose how to interpret your every situation. You choose how to respond to it. Even if you do nothing, you have still made that choice.

You cannot avoid the consequences of your actions — or your inaction. Not for long – or forever – anyway. This makes some people profoundly uncomfortable. Naturally. They don’t want to face up to the world as it is. They don’t want responsibility. It’s easier to blame others, traumatic circumstances, or bad luck.

Existentialism is sometimes called “the no-excuses philosophy.” You may be old. You may be sick. You may be broke. You may be disabled. You may be a single mom. But existentialists say you start from where you are and move forward.

How?

By accepting responsibility and making choices.

This isn’t always easy. Pursuing authenticity requires continual and honest re-self-examination. ReBuilding? You find and understand things about yourself that you prefer – or certainly find it easier – not to know. It may cause discomfort or friction with those you love – until you realize that their needs are in fact the same as yours?

Inauthentic lives, by comparison, are shallow, trivial, and unsatisfying. They are often marked by the dogged pursuit of material goods, social status, or the approval of others. And yet I’m aware that, even in saying that, I am judging others and telling them how they ’should’ live?

In many ways existentialism is a return to the roots of philosophy, a return to the ancients’ concern with truth, virtue, and the art of living well. Existentialism offers a guide to the perplexed. It shows us not just how to live, but how to flourish, how to create meaning in a senseless world. Those who reject this philosophy often do so not because they don’t understand it but because they can’t face it. And that’s unfortunate.

Existentialism provides a practical way of thinking about the world. It offers personal freedom and empowerment. It is a path to dignity and nobility.

Unlike the existentialist ideal of not living as though you have forever, I do fritter away so much of my time and put off until “someday” the things I really want to do. Or is that just a part of the essential pondering and growing toward decision? After all, to rush off ‘half-cocked’ would get us nowhere (and no gun will fire properly if it isn’t fully cocked)?

An existentialist recognizes that each day, each moment, is precious and irreplaceable. And yet, as mere humans, we need to ponder? We need to get to know ourselves and address all that we are? And we need to think about (procrastinate?) what we are to do before we do it? As my beautiful Dad said “think twice, cut once”…

Are you an existentialist? Or perhaps more as I am – an existentialist at heart? With a heart that is based in NVC, who is very conscious of her relationships, including that most important one with the self?!

It took a while to gradually build my weeks to look like this: A week of work that I Love, Hot Jazz, Dear Friends and a Fun Swing Dance Class to top it off on Sunday. It takes constant awareness and monitoring to keep life sweet – but if it ‘goes wrong’ I can always ‘tune’ it up and get it right again. Fairly easily. With the exact same plans you’ll find on my website or in my office.

Several of my clients have had similar – yet different – pleas this week: “I’m so done. This is just too much… Will it ever get better? I think it’s better and then, bam! Another problem…” Now what?

Is there a message in this post? Yes! Don’t give up. Trust. Like the song says ‘Hold on, just a little while longer.’ If your life right now looks impossible, hold on. Be patient and persistent and you will ‘get there’. NVC (aka non violent or compassionate communication or needs therapy), Imago Style therapy and Trust Oriented Therapy really work.

I count myself as very lucky because my life right now is pretty great Having said that, I worked hard to rebuild my life again (after major physical trauma and again more recently) and to find this place of personal fulfillment. I have a job that I love as a Victoria relationship counsellor. I have great relationships with my kids and grandkids. My house is tidy (pretty much) and now and again I get myself organized well enough that I can go on the beach with friends and the dog at lunchtime (like today!). I dance as much as I can and sometimes, like last weekend, life seems to overflow with good things. Yay! It wasn’t always this way. There have been countless times when I thought I wouldn’t be able to make it – when it seemed too hard. When months went by without obvious change. I know it’s not easy.

Last weekend a special friend and I went to the Hot Jazz 3-day festival in Sidney for a few hours on Friday night. I was going to say that ‘we saw’ a band, but it was so much more than that. We experienced them – saw them and heard them and were touched at a soul level by them… We breathed in their music, rocked as we watched great dancers and magically shared their love and delight in their music. It was a unique, fun, very live performance.

On Saturday I spent some time in Point Roberts with a couple of dear friends – and met a new friend. We shared some good conversation, connection and loving support. My friend Karen owns a Retreat and her whole house has a lovely energy – distant views of the ocean, a far infrared sauna, tasteful decor, a grand piano – and you can arrange to stay there too. A weekend there is one of the best gifts you can give yourself – and with her fabulous king sized guest rooms and perhaps your partner.

On Sunday the ferry wended its way past fairy-tale islands and Pacific coast beauty and home, where I had my second Swing/Jive/Lindy Hop lesson. There were ‘imperfect moments’ this weekend – but somehow everything seemed perfect.

The Importance of Communication Skills:
A Review: ‘Capriccio’ by Clemens and Richard Strauss

Kiri Te Kanawa sings Capriccio's Countess

The music started and after a few minutes the first characters appeared on the stage. There was no singing – which puzzled me. The opera is magnificent – and although the set was of a room in a very elegant house, the costumes were a little dowdy. I was nervous.

In no time my eyes glazed over, I’m afraid, despite what I knew in my head to be clever and pretty music. Keeping my head from nodding off and sitting still in my seat became a major challenge – my legs were twitching and my feet became numb. The importance of communication skills was never more evident to me – especially as I had been reading the subtitles rather than just allowing myself to be carried away by the rich music. Within the first hour both of the opera buffs I had gone to the opera with had given up and gone home! I was tempted to leave too but I was curious. I wanted to fight on and stick it out. This is very much true to my character – I believe in happy endings – if you can tough it out!

NVC - A Language-of-life

NVC aka Non Violent Communication or Compassionate Communication

I guess we need to face it: facts are boring?

In order to be listened to, we need to be interesting?

Imago by Dr Harville Hendrix - a powerful new couples therapy

The cast decided to write an opera – similar to the boring plot we had just sat through – and there is a long and very beautiful aria sung by the countess – suffused at last with wonderful feeling. Feeling that can be understood in any language, which as this language was German and I am English, was another interesting fact to me? Feeling, even expressed clumsily, would seem to be easily forgiven by the audience. Marshall Rosenberg of NVC says the same is true in communication?

Capriccio cast, Royal Theatre March 6 2010

How does this relate to the importance of communication skills? My hope is that as this story has unfolded, it’s become a little clearer? According to Imago, in life, when a couple leave the magic of a new romanic love, they often start the tortuous journey of ‘unknowing’ each other? They start bantering, ‘assuming’ that the other knows what they’re feeling – and bickering and fighting.

When they start speaking to each other from the heart and reveal their vulnerable feelings to each other, their relationship deepens and almost any situation can be solved and rift can be healed. When they explore their needs their connection with themselves and with their partner is further enriched. NVC is the ‘language of life’ that helps you to uncover the way to communicate deeply. It takes you by the hand and gently shows you, step by step, how to transform your relationships, both with others and with yourself.

Capriccio illustrated graphically to me the difference between a language based only on facts and feelings and that enriched with feeling. It was a wonderful example of how boring bickering and facts can be. This was so so clear… The whole set came to life – as though someone had thrown on a bright light – and I was filled with energy as soon as feeling and passion were introduced.

Perhaps the critics who wrote their unkind reviews had only watched the beginning of the opera? By hanging in and toughing it out through the first two thirds of this elegant but very tedious play I was richly rewarded with a beautiful ending.

In a similar way, if a couple can tough it out through the difficult part of their relationship – and get some effective help from a good couples counsellor – they too may be richly rewarded.

In fact I would say this: trust yourself… Trust that your core, your very essence, guided you to choose the right partner for you. With the right communication tools – if this relationship is what you choose to keep – you will find the happiness you long for. Finding the right counsellor and the right help is the essential ‘piece’. NVC coupled with Imago style therapy, glued together with guru Mahmud Nestman’s Trust Oriented Therapy is a perfect counselling recipe for a great relationship.

Good luck!
Julie

Sisyphus, climbing upwards, against the odds

Trauma and disability slow you down. Big time. A very good indicator for me will be when I can do everything I have to do PLUS write my blog regularly!

Exhaustion is the one common denominator I hear from everyone ReBuilding: lack of stamina and everything taking more energy – at least ‘more’ in terms of as a percentage of what you have?

What is there to help pull us up that last bluff? I have found something that helps me: every time. It’s cheap and simple, totally non-invasive and drug-free…

My beautiful and talented young friend Baldylocks is often exhausted because she is pushing herself to reach the top of the horrible ‘recovering from cancer’ mountain where she will be able to enjoy the view from the top. (And she’s doing brilliantly well – even though it has taken 4 or 5 years of her life, so far. Check out her blog.)

Three of the most important things you can do to help get well – on top of following your doctors’ orders, resting and believing that, without a doubt, you will get well:

• Take an excellent ’super’ multi vitamin and lots of C, D, E
• Use the Sota silver pulser to give your immune system a break – this is a totally non-invasive and drug-free gadget that works like a charm – amazing….
• Check out “What I Mean Is…” a unique workbook (there’s not one other like it in the world) for high functioning adults and get your speech and language ‘put back together’

This lack of stamina and exhaustion applies equally, I think, to everyone? Predictably – and every day – to the disabled or those who have had serious trauma. But, hang on a minute… That includes most of us?

All 4 of my otherwise-very-healthy young sons have been fighting recently. Ben bit off more than he – or anyone – could chew these last 2 years. Including some pretty heavy emotional trauma and he is constantly ‘fighting’. (In fact, just back from Africa last month, newly married, he passed a high-level trucking test yesterday and has landed a great job too. Congratulations again Ben!) My oldest son has been fighting his own way through heavy emotional trauma for the last few years.

My youngest son, Thomas, has been fighting to launch a new business – a successful website design business called Midnight Donkey – AND uses my zapper to great effect whenever he can’t quite seem to kick a cough or cold. My other son Daniel is a strapping bodybuilder who has launched his own successful drywall business – We Drywall Inc – and has ‘resorted’ to using my zapper (very reluctantly but to amazing effect!) once or twice recently. (Being healthy young men I think they see ‘giving in’ and using my zapper as not very manly? but I am delighted when they ask me if they can use it.

Climbing by a brook in Hope

My good friend who was a healthy university student one day and found herself paralyzed the next and fighting 7 very heavy years of medical nightmare is another perfect example of this kind of ‘fighting’. She started using the zapper recently as part of her strategy to get well.

And myself? It took me 8 or 9 years to climb – and fight – to the top of that ‘good health’ mountain after my own trauma. Where the view really was breathtaking and worth it and life was amazing. Only to be shoved down by circumstance and life 20 some years later by a car accident, ensuing pain, migraines and nasty lawyers. Unfortunately I’ve had to haul myself – and fight hard again – to get back to where I can enjoy life again. On MY terms… (I’m nearly there, I think!) And very much in debt to my Sota zapper.

Sota silver pulser or 'zapper'

For me, my Sota zapper has been truly amazing and the single one biggest help. It has allowed me to steadily climb, without a single pause. I haven’t bought a Tylenol or Neo Citran since I got it. It has saved me precious days off and allowed me to maintain steam and truly catch up.

Stamina – and the lack of it – compromises your immune system and makes you very susceptible to every germ around. I was never able to ‘get ahead’ because for every 2 steps forward I would take, I would catch every cough, cold and sore throat I came across and take 2 or 3 steps backward. This doesn’t just happen in cases of more serious debilitating illness either: it equally happens to all of us who are even just under stress. Try being a full-time working mom with a couple of nursery school age kids or an older person contending with cholesterol problems and arthritis?

Today is a beautiful sunny day! Spring and summer are definitely on their way. I’m feeling very grateful and vulnerable and brimming over with warm wishes for those I love – and everyone else in the world. Good health and happiness and strength to everyone!

Is your life calm and easy? Well balanced? Chances are, certainly if you live in the West, it’s not! Making me even more aware of the differences these past few months – balance-wise – were our new family ties with Kenya, Africa.

I see my 2nd son, Dan, racing around growing a great business (We Drywall Inc), being a great single parent to his young son, remembering to go to the gym and play hockey but not managing to find time to shop, do housework and cook because he chose to fit in a visit with brother Ben this week instead. He has a ton of energy – more than anyone else I know – but even he looks exhausted.

My disabled friend manages to work full-time and fit in a few sessions at the gym – but only with no family obligations and with homecare to help around her one-person home. It seems so unfair to have to make a choice that clearly doesn’t fulfill all of her family/play desires – just because she’s disabled and simply doesn’t have the energy?

I’ve come to the conclusion that, whilst our infrastructure and our healthcare may be wonderful, life in the West is unhealthily hectic and impossible for most of us. We’ve created a monster.  I look forward to the day (soon, I hope) that I can travel and search for a home that allows more balance in life.

For now, the best thing to do is to keep the need for balance in your life at the forefront of your mind: be conscious of it.  Be willing to be flexible and try different options to see which fits best for you. Be mindful of including exercise – come what may – because exercise alone seems to keep your capacity and stamina healthy. Constantly adjust your ‘happy-meter’.

My own highlights so far this month?  My 3rd son, Ben, married a beautiful woman I am yet to meet (photograph here) and despite enormous hurdles is happy and optimistic.  My youngest son, Thomas, has been designing websites – very successfully – for nearly 8 years and has now started his own business called MidnightDonkey which is taking off like a rocket (now is the time to email him if you’re about to create/change your website).  He is – and always has been – at the helm of ReBuildingYou.

Three of the most important things you can do to help get well – on top of following your doctors’ orders, resting and believing that, without a doubt, you will get well:

• Take an excellent ’super’ multi vitamin and lots of C, D, E
• Use the Sota silver pulser to give your immune system a break – this is a totally non-invasive and drug-free gadget that works like a charm – amazing….
• Check out “What I Mean Is…” a unique workbook (there’s not one other like it in the world) for high functioning adults and get your speech and language ‘put back together’

Most importantly I have good friends, fabulous family and although life is hectic now,  I look forward to an easier, more peaceful time one day soon – and to meeting Doris! I wish you happy times (if a bit too busy sometimes ) – Julie

Canada has the highest incidence of multiple sclerosis in the world – why are we so complacent when it comes to possible new treatments?  I wonder why? And why do we humans hang-on so tightly to treatments that don’t work? Despite my own prognosis I was determined to find a way to get back to health and walk again and I used several therapies to get to where I am today. And despite being way better than every predicted, I am still making progress after 25 years.

Three of the most important things you can do to help get well – on top of following your doctors’ orders, resting and believing that, without a doubt, you will get well:

• Take an excellent ’super’ multi vitamin and lots of C, D, E
• Use the Sota silver pulser to give your immune system a break – this is a totally non-invasive and drug-free gadget that works like a charm – amazing….
• Check out “What I Mean Is…” a unique workbook (there’s not one other like it in the world) for high functioning adults and get your speech and language ‘put back together’

Acupuncture, Total Biology and now this amazing new CCSVI have interesting results and if I had MS I would be demanding – and trying out – all of these treatments?  Don’t ‘accept’ treatment that doesn’t work – and never give up hope…

This is exciting and whilst I can understand the stick-in-the-muds holding out for ‘better studies’ – I wonder what would happen if – en masse – the MS population started trying all these things and produced the numbers and experience and research?  I would love to hear from those who have sought out a treatment that works? Write to (Contact) us! – Julie at ReBuildingYou.com

Read this news article from the Canada Globe and Mail, 21 November 2009 By Andre Picard and Avis Favaro…

Elena Ravalli was a seemingly healthy 37-year-old when she began to experience strange attacks of vertigo, numbness, temporary vision loss and crushing fatigue. They were classic signs of multiple sclerosis, a potentially debilitating neurological disease.

It was 1995 and her husband, Paolo Zamboni, a professor of medicine at the University of Ferrara in Italy, set out to help. He was determined to solve the mystery of MS – an illness that strikes people in the prime of their lives but whose causes are unknown and whose effective treatments are few.

What he learned in his medical detective work, scouring dusty old books and using ultra-modern imaging techniques, could well turn what we know about MS on its head: Dr. Zamboni’s research suggests that MS is not, as widely believed, an autoimmune condition, but a vascular disease.

More radical still, the experimental surgery he performed on his wife offers hope that MS, which afflicts 2.5 million people worldwide, can be cured and even largely prevented.

“I am confident that this could be a revolution for the research and diagnosis of multiple sclerosis,” Dr. Zamboni said in an interview.

Not everyone is so bullish: Skeptics warn the evidence is too scant and speculative to start rewriting medical textbooks. Even those intrigued by the theory caution that MS sufferers should not rush off to get the surgery – nicknamed the “liberation procedure” – until more research is done.

U.S. and Canadian researchers are trying to test Dr. Zamboni’s premise.

For the Italian professor, however, the quest was both personal and professional and the results were stunning.

Fighting for his wife’s health, Dr. Zamboni looked for answers in the medical literature. He found repeated references, dating back a century, to excess iron as a possible cause of MS. The heavy metal can cause inflammation and cell death, hallmarks of the disease. The vascular surgeon was intrigued – coincidentally, he had been researching how iron buildup damages blood vessels in the legs, and wondered if there could be a similar problem in the blood vessels of the brain.

Using ultrasound to examine the vessels leading in and out of the brain, Dr. Zamboni made a startling find: In more than 90 per cent of people with multiple sclerosis, including his spouse, the veins draining blood from the brain were malformed or blocked. In people without MS, they were not.

He hypothesized that iron was damaging the blood vessels and allowing the heavy metal, along with other unwelcome cells, to cross the crucial brain-blood barrier. (The barrier keeps blood and cerebrospinal fluid separate. In MS, immune cells cross the blood-brain barrier, where they destroy myelin, a crucial sheathing on nerves.)

More striking still was that, when Dr. Zamboni performed a simple operation to unclog veins and get blood flowing normally again, many of the symptoms of MS disappeared. The procedure is similar to angioplasty, in which a catheter is threaded into the groin and up into the arteries, where a balloon is inflated to clear the blockages. His wife, who had the surgery three years ago, has not had an attack since.

The researcher’s theory is simple: that the underlying cause of MS is a condition he has dubbed “chronic cerebrospinal venous insufficiency.” If you tackle CCSVI by repairing the drainage problems from the brain, you can successfully treat, or better still prevent, the disease.

“If this is proven correct, it will be a very, very big discovery because we’ll completely change the way we think about MS, and how we’ll treat it,” said Bianca Weinstock-Guttman, an associate professor of neurology at the State University of New York at Buffalo.

The initial studies done in Italy were small but the outcomes were dramatic. In a group of 65 patients with relapsing-remitting MS (the most common form) who underwent surgery, the number of active lesions in the brain fell sharply, to 12 per cent from 50 per cent; in the two years after surgery, 73 per cent of patients had no symptoms.

Augusto Zeppi, a 40-year-old resident of the northern Italian city of Ferrara, was one of those patients. Diagnosed with MS nine years ago, he suffered severe attacks every four months that lasted weeks at a time – leaving him unable to use his arms and legs and with debilitating fatigue. “Everything I was dreaming for my future adult life, it was game over,” he said. (Story continued below)

MS For Dummies explains MS in simple layman’s terms; the DVD is Living with MS and the last book is Healing MS – further description of each item is available by clicking on the item image.

Back to Mr Zeppi: Scans showed that his two jugular veins were blocked, 60 and 80 per cent respectively. In 2007, he was one of the first to undergo the experimental surgery to unblock the veins. He had a second operation a year later, when one of his jugular veins was blocked anew.

After the procedures, Mr. Zeppi said he was reborn. “I don’t remember what it’s like to have MS,” he said. “It gave me a second life.”

Buffalo researchers are now recruiting 1,700 adults and children from the United States and Canada. They plan to test MS sufferers and non-sufferers alike and, using ultrasound and magnetic resonance imaging, do detailed analyses of blood flow in and out of the brain and examine iron deposits.

Another researcher, Mark Haacke, an adjunct professor at McMaster University in Hamilton, is urging patients to send him MRI scans of their heads and necks so he can probe the Zamboni theory further. Dr. Haacke is a world-renowned expert in imaging who has developed a method of measuring iron buildup in the brain.

“Patients need to speak up and say they want something like this investigated … to see if there’s credence to the theory,” he said.

MS societies in Canada and the United States, however, have reacted far more cautiously to Dr. Zamboni’s conclusion. “Many questions remain about how and when this phenomenon might play a role in nervous system damage seen in MS, and at the present time there is insufficient evidence to suggest that this phenomenon is the cause of MS,” said the Multiple Sclerosis Society of Canada.

The U.S. society goes further, discouraging patients from getting tested or seeking surgical treatment. Rather, it continues to promote drug treatments used to alleviate symptoms, which include corticosteroids, chemotherapy agents and pain medication.

Many people with multiple sclerosis, though, are impatient for results. Chatter about CCSVI is frequent in online MS support groups, and patients are scrambling to be part of the research, particularly when they hear the testimonials.

Kevin Lipp, a 49-year-old resident of Buffalo, was diagnosed with MS a decade ago and has suffered increasingly severe attacks, especially in the heat. (Heat sensitivity is a common symptom of MS.) His symptoms were so bad that he was unable to work and closed his ice-cream shop.

Mr. Lipp was tested and doctors discovered blockages in both his jugular and azygos veins. In January of this year, he travelled to Italy for surgery, which cleared five blockages, and he began to feel better almost immediately.

“I felt good. I felt totally normal. I felt like I did years ago,” he said. He has not had an attack since.

As part of the research project, Mr. Lipp’s siblings have also been tested. His two sisters, both of whom have MS, have significant blockages and iron deposits, while his brother, who does not have MS, has neither iron buildup nor blocked arteries.

While it has long been known that there is a genetic component to multiple sclerosis, the new theory is that it is CCSVI that is hereditary – that people are born with malformed valves and strictures in the large veins of the neck and brain. These problems lead to poor blood drainage and even reversal of blood flow direction that can cause inflammation, iron buildup and the brain lesions characteristic of multiple sclerosis.

It is well-established that the symptoms of MS are caused by a breakdown of myelin, a fatty substance that coats nerve cells and plays a crucial role in transmitting messages to the central nervous system. When those messages are blurred, nerves malfunction, causing all manner of woes, including blurred eyesight, loss of sensation in the limbs and even paralysis.

However, it is unclear what triggers the breakdown of myelin. There are various theories, including exposure to a virus in childhood, vitamin D deficiency, hormones – and now, buildup of iron in the brain because of poor blood flow.

While he is convinced of the significance of his discovery, Dr. Zamboni recognizes that medicine is slow to accept new theories and even slower to act on them. Regardless, he can take satisfaction in knowing that the woman who inspired the quest, and perhaps a dramatic breakthrough, has benefited tremendously.

Dr. Zamboni’s wife, Elena, has undergone a battery of scans and neurological tests and her multiple sclerosis is, for all intents and purposes, gone.

“This is probably the best prize of the research,” he said.

Andre Picard is the public health reporter at The Globe and Mail. Avis Favaro is the medical correspondent at CTV News.

With reports from Elizabeth St. Philip, CTV News

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THREE NEW CASES A DAY

An estimated 55,000-75,000 Canadians have multiple sclerosis, and every day three more people in Canada are diagnosed with the disease. Canada has one of the highest rates of MS in the world. MS is the most common neurological disease affecting young adults in Canada.

- Women are more than three times as likely as men to develop MS.

- MS can cause loss of balance, heat sensitivity, impaired speech, extreme fatigue, double vision and paralysis. The disease is characterized by lesions on the brain, a result of the breakdown of myelin, the protective covering wrapped around the nerves of the central nervous system.

- The most common treatment for MS is corticosteroids. Steroids reduce inflammation at the site of new demyelination, lessening symptoms.

- MS was first identified and described by French neurologist Jean-Martin Charcot in 1868.

- MS is widely believed to be an autoimmune disorder, but the cause or causes are unknown. There are a number of theories about what might trigger the disease, including exposure to a virus in childhood; exposure to tobacco smoke; lack of the female sex hormone prolactin, which plays a role in the development of myelin; and vitamin D deficiency. Vitamin D may play a role in MS because it helps to construct the interior layer of blood vessels.

- Despite the long-held assumption that MS is an autoimmune disorder, new research suggests it is actually a vascular disease triggered by a buildup of iron in the brain due to problems in blood flow.

Source: MS Society of Canada

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‘Liberation’ surgery

An Italian vascular surgeon, Dr. Paolo Zamboni, has put forward a radical new theory about the underlying cause of multiple sclerosis. He suggests that malformed veins leading from the brain are leading to blockages and a build-up of iron in the brain, and if the veins are cleared, the symptoms of MS will disappear.

THE PROCESS

1. CONSTRICTION

Blood flow is hampered in key veins like the jugular.

2. THERE WERE INCREASED LEVELS OF IRON IN THE BRAINS OF THOSE STUDIED

The blockages cause injury to the brain that is seen in MS patients.

3. Using angioplasty, the veins can be cleared and blood flow restored.

What a week this has been.  And what an example…

My 9 year old hero, Cobe, was admitted to hospital to have an ‘osteochondroma resection’ on his rib – something he now was ready and wanting to have done. Potentially quite difficult surgery.

I was blown away by his dad Daniel’s remarkable ‘cool’ in the face of what must have been an almost unbearable anxiety for his son’s welfare. Laughing and joking on the outside when you’re tied in knots inside is quite a talent.  And exhausting.  And Cobe’s trust in his Dad, Daniel, was nothing short of beautiful.

The reward that flowed from Cobe’s ultimate trust and acceptance – trust that ‘everyone is just right and it’s going to be perfect’ – seemed to translate into the fact that it was.

And I wonder, is the fact that everything went so well partly a result of that ultimate trust, belief and acceptance that things would be perfect?   I think so.  And why am I so surprised?  Of all people, I believe in mind over matter.  Very hard to be faithful to that belief when you are so afraid…

This week I had the honour of seeing that belief in practice. Congratulations Cobe! You have my vote for the bravest kid on the block!

Happy New Year to everyone – I feel a surge of optimism!  The first decade of this millenium has not been an easy one, not for me and not for many people I know.  In fact it’s been downright horrible!  Right now, ever since I realized it was a new decade,  I feel almost on fire with positive energy.

For New Year’s Eve I drove for a couple of hours up island – in the dark and rain – to a great pub in Saltair.  Marilyn and Martin and I danced the night away to ‘Luv Train’ – a fabulous band of my good friends Virginia, her husband Larry and Rick Ryce from One Human Family choir. I couldn’t have wished for a lovelier start to the new year – a warm and fun evening.

And tonight… Well, tonight I find myself at a highschool gym with Sunny (who wrote the poem on this site last month) a basketball player who ten years ago, in his 20s, was seriously disabled.  Tonight, for the first time this century, he played basketball again!  It was beautiful.

The energy in the gym as the teams thundered up and down, bouncing the ball was exciting.  And the skill!  There are a dozen players, men and women, led by a handsome, 6′3″ ex-regular basketball player called Tony G whose skills from a chair are nothing short of amazing.  When everyone is in a chair, suddenly the word ‘disabled’ evaporates and the feeling of freedom in that gym was palpable.

When we arrived – having got lost (which has become my hallmark) – some of the team were here already, warming up with 2 little blond kids who were the son and daughter of one of the players and dab hands with wheelchairs  and a basketball themselves!

Tony spent some time explaining to me that somehow, in order for the teams to thrive, they need to get the word out to the community that they welcome new players, both abled and disabled. Unfortunately most of the key players are already struggling with disability – please forward the link for this blog to your friends, especially if you live on Vancouver Island. The more that we know such sports exist, the more we can support them. And if you know of someone who has become disabled, take them out to join in a game.  If you email me I will be happy to put you in touch with Tony.

The bottom line tonight?  These photographs don’t show the incredible energy in the gym. If you have good wheelchair basketball photos I would love to see them.

And after years of telling me ‘no, I will never be able to play basketball again’ I saw Sunny laughing and racing up and down the gym shooting baskets.

He’s back…

This morning I received this poem – actually yesterday morning now – and I was struck by how the words seemed to speak not just to a lost romance but also to a future lost through trauma.  I also want to say how loving, kind and genuine this young man is.

I know this isn’t a popular way to look at things – everyone always seem to want you to smile and ’see the bright side’ and move on from there.  Move on from the ‘good place’ without really experiencing the bad.  And I was wondering, when we experience grave trauma can life ever be the same again?  Do we even want it to be? After all, we always talk of the experience we gain and that will shape us… Changes us?

Maybe, like with a romance gone sour, we have to find the strength to mourn our loss (wallow a little) and then, when we’re ready, get on and live our life.  Our new life. The more shocking and devastating the loss, the longer this can take – five or ten years even. I believe that we have to mourn in order to live on.  And to do that. we first have to accept that we’ve lost the person we were.  And it can take a good few years for that to happen.

Here’s the poem, written by a beautiful young man who is  several years post his catastrophic head injury and who is  beginning to pick up the pieces and rebuild his life – very exciting!

Burned Out Candle

Burned Out Candle by Sunny Johal

I am tired and broken down.
One day i am going to get spilled over,
Slowly slowly I’ll forget about you,
The thought of you is in my blood,
Where ever I am, where ever I go,
The thought  of you always lives there,
Slowly slowly I’ll forget you girl,
I’m a burned out candle and you are the light,
Slowly slowly I’ll forget you,
Happiness is long gone,
To win you over, I lost everything.