Tuesday, April 27, 2010

In my dreams I am never in a wheelchair… Pete and Margot (in italics) would like to invite you to explore with us in words and images what it is to live well with a chronic illness.

In later postings to this blog we want to speak of Margot’s experiences with surgery in Frankfurt to correct the controversial CCSVI blockages in her neck veins which might be at the root of MS, and explore what it is to accept chronic illness whilst struggling at the same time to overcome it.

Mmmm can’t we say from the beginning Pete that this is about more than whether we have MS, or cancer, or just the mere inevitabilities of our own mortality,
What we are talking about is how we face our hopes and fears and live creatively to squeeze all of the juice out of each moment of this precious life.
Exactly that, and it’s also a love story.
But lets start our tale at the beginning. Margot and I met in the summer of 2004 at a zen Buddhist retreat in Holland. I came over from England to meet with the teacher who has a retreat centre in the hills of Southern India. Margot could stand on her crutches at the time, and as I had done some care work in HIV/Aids hospices I was confident to help her out of her wheelchair into the meditation hall. In that silent week a certain covert communication passed between us. I was struck by her dignified forbearance and humour.

And I by Pete’s warmth and kindness.,
By then I had had MS for six years.
MS has taught me that when you have a serious illness, the world often lets you down.
I was determined to live my life as good as possible with few limitations, and without ANY expectations.
This ultra-independence was my source of strength but as you will see later my source of weakness.
In that particular retreat I decided to end the relationship I was in for about four and a half years. It had become an unhealthy triangle.
Pete's warmth embarrassed me, for I didn't know how to handle it. I knew well how to deal with rejection. This selfless kindness was new to me.

So, four years ago we found ourselves in this situation: I (Margot) had advanced secondary progressive Multiple Sclerosis (MS). I could no longer stand let alone walk, had lost the use of my right hand, and was facing a ‘creeping paralysis’ contracting what was left of my life.

And I (Pete) had just spent a couple of years travelling and living in ashrams and communities of India. I had put away my back-pack to live a settled life outside Amsterdam loving and looking after Margot 24/365.
There we were two people facing - as most of us do at some stage - a life of radically altered possibilities. What to do?
The first thing we did was to look deep inside.

Pete had trained in psychotherapy and both of us had many years of exposure to the wisdom and practices of Buddhism.
So began our adventure. Two unlikely souls set out on a journey to explore new territory together. The one a free-ranging backpacker now pacing a flat in an apartment block and seldom going out except to the supermarket and the other…
Well, ten years ago when I worked as a paramedic in an emergency ambulance crew, sure I could run like the wind - but how to use all this energy in a creative and fulfilling way rather than just chasing the wind?
Let me say a few words about my MS
MS taught me how to spend the little energy I had as wisely as possible.
Even as late as the summer of 2000 hobbling on a walking stick I travelled to France and Poland with the smallest imaginable backpack.
And here is that stubborn , independent side of me again: instead of realising that my MS was deteriorated rapidly, and that it might be wise to adjust my situation, I stubbornly ignored all the signals.
When Pete first came to visit (four years ago) I was throwing myself out of bed onto the floor at six am to climb up into my wheelchair so that I could work from home. A clerical job that no one valued. Trying to type as I watched the use drain out of my right hand.
My physical situation now makes it clear to me I've become completely dependent on care. That is hard to accept. But it is nothing but the truth. And this is what we set out to explore
One of the first things we explored was how to heal our lives since although Margot’s death could not be said to be imminent it had to be acknowledged that she is in the top few percentile of severity of progressive MS.
And that’s serious - but then who knows? Just who damn well knows?
What makes me think I am not going first. So lets look together at healing our lives and daring to face the inevitable we all will have to face?
That’s right, MS or not; I would have to make some choices. Pete helped me indeed to make clear what my choices were.
But let me be a little more specific: as a child I was abused by my stepfather. His name was Kees. Apart from an anorexic year I behaved pretty “normal”, so nothing happened.
Then, at the age of 23, when I worked as a nurse in therapeutic community, one of the incest survivors asked me to help her to return home. The ghost came out of the bottle, and never returned.
I went into therapy, and started right after that with studying and practicing zen meditation.
After a long time I realised that hatred does nothing but destroy yourself and others.
But how to stop it when you are full of hatred?
MS made me realise how short life is, and that I should use my time wisely.
Last year I invited Kees to come and see me, and asked him how life has been for him. I saw an old broken man who suffered the consequences of choices he made. He broke down and sobbed. Such sadness and remorse.
I saw that forgiving him gave a tremendous space:- In myself, in him and my stepsister. Let me be clear - what he did was horrendous. That act CANNOT be forgiven but the man can be - must be - if he is not to haunt the rest of my days.
It was the best way to overcome being a victim and the start of truly embracing life and the love of my life.
We decided, as we said already, that the way forward for both of us was to concentrate on what we CAN do rather than mope about the frustrations of what we can’t do. And secondly that we would develop our talents to express ourselves creatively. (And thirdly - to take one day at a time).
We set out to create a series of images exploring our journey together and these first two speak of looking inside - the only place where healing and creative inspiration might be found.
So Margot devoted herself full-time to writing her novel and I bought a digital camera and set out to learn the intricacies of Photoshop digital editing. More recently I am teaching myself to paint - and make little maquettes or models and my favourite thing is combining them all together as layers in Photoshop.

Over these past four years I have watched Margot’s writing with her now very weak and spastic left arm deteriorate remorselessly until now on a good day she might make only a hundred words ( and one e-mail recently took two weeks - day in, day out) but for me it is a constant source of wonder and inspiration.
I don’t want to sound unsympathetic to people with chronic illness (I had a devastating one myself for ten years) but the truth, as I see it, is that we ALL face a multiplicity of constraints which inhibit us from realising the expression of our authentic selves.
In that sense people with MS or cancer or whatever… are not special - it is by degree the human condition.
There are constraints which Fate dealt us: our physical strengths and limitations, the circle and values we were born into which informed and educated us. And yes things like devastating illness which we never chose.
Then there are the consequences of choices we made. To have children. To develop this skill and not that. To live here not there. Some of these can be reversed of course. I chose to share Margot’s MS and it was one of the best choices I made.
BUT - and it’s a big butt - what limits us from expressing our authentic selves the most is surely beliefs we have (and have been given) about ourselves.

I think this is SO true. When we show people our work they take on a sad expression and say ‘It’s a pity but I never had any creative talents’.
As if ‘talent’ is a thing like a USB cable that comes in the box! Or not!
Most of us can drive - but not because we were born with that driving talent gene… but because we learnt by doing those stupid three point turn things over and over ‘til we could. We are not all going to be Gran Prix winners (and who would want to?) but we are good enough. who would want to?) but we are good enough.
My friend Alan in Scotland has Crohn’s and MS and has just taught himself to play the piano. At the wedding next week he will walk to the piano as if he has had a wee dram too much (which might be true) and play Fur Elise and I am sure bring the house down. And then he and Margaret will read out the poem they wrote together for the couple. How mad is that - someone with MS learning to play the piano! Like someone who has lost the use of her right hand and losing her left thinking she can write a novel. It’s a kind of madness!
What we don’t want is for anyone to feel ‘oppressed’ by our example -
‘God I could never write a novel or learn digital geekery or learn to paint or play the piano, or jump out of a plane without a parachute ,,, I don’t have any talent…’
Margot doesn’t paint because she has lost the coordination of her hands… That’s a fact. But that’s also why she does something she can still do.
Our precept has been:
don’t mope about what you can’t do but apply yourself to what you might be able to do with perseverance’
I started the year not able to draw a convincing stick-man. And what I do is not for exhibition or anything; but it’s a bit of fun for the two of us to play with and enjoy together.
The question we pose for YOU the reader whether you have something or nothing is just this: ‘How can you express your creativity more fully to better realise your authentic self?
We like to say not ‘What is the meaning of Life ?’… but rather:
‘What gives my life meaning?’
It is the antidote to feeling a victim of circumstance.
MS and ME
How easy it is to fall for the MS Victim tag as if all the complexity of existence can be reduced to just that.
I love the strength and dignity of this image.
So which is the real Margot Margot?
Well in truth neither of them (and both of them).
Both are deluded images of myself I can get caught up in. As I said before this strong independent image (which I also love) is also the stubborn side of me that is a weakness. And the other one which you say makes me look like Maggie Thatcher (he can be so cruel at times!) is also a side of me to love.
I don’t like to look at that side of me - my life force which is withering away. But I acknowledge both these aspects of my reality


What we both agree (and I feel a lump rising in my throat as I start to write this) is that far worse than Death would be the loss of cognitive clarity. Margot has ‘off’ days when she is nearly as confused and absent minded as I am on a good day! This is what I fear the most - the slipping away of the companionship of my loved one…
This ‘paintograph’ tries to capture my unsettling feeling of being with Margot in this dissociated state.

And whilst we are on such cheerful subjects watch out here comes another one:
DIGNITY - indignity

So often I feel people just look embarrassed at me when, for example, I drop my cake. But the deafening silence is so painful that I can't bear it anymore. Eating has become an inelegant activity. Now half way through eating with my spoon I feel as tired as if I have been digging the garden.
So I need some help and that independent stubborn Margot finds that hard to accept. But I know also that it feels cruel just to look at me, and do nothing. I am stuck in that impasse.
That's why I feel so acknowledged in activities I struggle with in this image.. For example eating, toilet, and writing. We discussed this image SO much before we made it together. And now a couple of years since we made it, I LONG to be back in this state as now I cannot feed myself at all.
Now Margot cannot even hold a beaker or… hard to say… even wipe a tear from her eye.)
I admit, this is a shocking image, particularly for those who also have MS, but maybe are in a different stage looking at this image.
Ten years ago I would have been very wary of looking at such an image or reading this dialogue… but let me say this again for it is my truth:

OR put another way…. MS is not a gift - it’s more like a poisoned chalice - but rather that you made the effort and FOUND the gift in MS.
That’s clearer. It gave me both the focus and the time to do what I always knew I wanted to do but never did.
The idea for this image came to me a couple of weeks ago - I was rushed to hospital in an ambulance and in intensive care with serious pneumonia and a bit woozy from the fever - and it came to me. The Gift of MS is like a precious jewel on a beach. You have to turn stuff over and search for it… but when you find it - what a joy!
But this is no more than an expression of Pete's and my process and the meaning and narrative we both made together of living with a chronic disease we both share..
This is an inspiring image (for anyone still with us!) of the healing power of Nature from the Veluwe forest of central Holland.


So my last image speaks of looking inside where all inspiration is to be found. Its an interior landscape that speaks of the fears and riches of the inner life, of tender innocence and its protector and befriending our demons until we dare to turn our backs on them. And therefore how compassion without
courage is nothing. Its set in the desert of New Mexico where I lived in a Buddhist monastery. Sorry that its inspiration comes from various different images I saw, but the composition and execution is mine. Its mostly in acrylics with a pen and wash figure and the cowering wolf totally digitally painted. Its mixed and blended in Photoshop and printed out on canvas.

Finally I have the Last Word (as usual).
When Pete and I dream I never appear in my wheelchair.
I run and dance - a free sprit. And I like that!


You can see from what we have said we consider ourselves very blessed with a wonderful life and have committed ourselves to support a hospice project in Northern India. We have more of our work on this website which we are trying to sell to support them. Please DO visit our site at:
May the beautiful vision of the GANGA PREM HOSPICE http://www.gangapremhospice.org/index.htm be realised through the generosity of good people around the world.
And may countless thousands be inspired to ‘live together well until we die’.

Please look for our next posting ‘Change what you can change’ and click it top right….