And it goes on...

Natasha has a problem with her feet, namely that both of them are rotated inwards too much. This is a problem that I remember my brother and sister having many years ago and for which they had special shoes. Natasha has had special inserts in her shoes for a while, but to no effect. It seems that in the last year or so the problem has become worse.

Marion recently took her to see a specialist and after an examination and a CT scan we heard the specialists opinion: the rotation is so bad, 30 degrees, that it is unlikely that she will grow out of the problem and therefore it needs to be addresses operatively. The operation involves sawing through the thigh bone of each leg, rotating the lower part of her leg and refixing the bones with metal plates. It requires that she spends 6 weeks on crutches after the operation, if we do one leg at a time, and it will be 3 months before she can do sport. If we choose to do both legs at the same time, she will need to be in a wheelchair for 6 weeks.

This is hard news to hear. There's no immediate rush so we have time to decide when it should be done. But we have to make a hard decision: 1 leg at a time, 2 operations and no sport for 6 months or 2 legs, one operation, a wheelchair and no sport for 3 months. Difficult.

But I have to say that I find the whole thing scary. The idea that our so precious Nattie has to undergo medevial torture, the idea that we're going to be back in hospital, the fear that something might go wrong, is a new a difficult load to even begin to consider. Again I have the feeling that all the things I love are being attacked for some reason.

Why us? Why now? Why at all?

Oh, and by the way, I should not have opened my mouth about sleeping better. I've just had three terrible nights. The first two were so bad that I ended up swallowing a half sleeping tablet at 3am. But I refuse to build up the side effects again, so last night I just suffered. The result is that I've been more than normally zombie-like today. Have an evening meeting in Amsterdam this evening and I wonder just how much use I'll be?

Sleeping better

Difficult day. Went Mountain Biking with Nattie this morning, but was thinking it should have been Kay. This afternoon I have resumed the project I started last summer for Nattie, namely building a board for her railway. But again this just brought back memories of when I started it, when Kay was last at home...

However, to change the tone, I think that I've got my sleep problem stabilised. With the help of melatonin and an over-the-counter sleep inducer I seem to be getting around 5-6 hours of dream-free sleep. I'm still waking up early and I'm still incredibly tired, the sleep deficit that I've built up is enormous, but at least it's not getting worse.

Last night we were in bed late-ish, but I slept till about 8am this morning, which was a turn up for the books. However I woke up feeling completely exhausted and we both ended up snoozmg till 10. I guess that it will take a long time before I wake up feeling ready for the day, but at least for now I'm beaten the prescription sleep medication.

Missing the Future

I've had the second and, hopefully, final round of treatment for skin cancer today. And again it's been a day of missing Kay. In fact my heart feels heavier than in weeks, I'm constantly on the edge of tears and I feel very depressed. In this state it's so difficult to think positively, to try to find some cheer for the people around me.

The thing that I'm missing more than anything at the moment is Kay's future. At the age of 10 a child has just started to show their potential, but has yet to realise it. Kay shined at so many things: hockey, tennis, schoo, to name a fewl. She was so diligent with her school work. At home she chose to do homework, chose to go beyond the material that was required and she continued with this during her battle with cancer. She worked so hard, was so organised and serious about school work that I'm sure she would have grown up to have a great and responsible career. She would have been successful at anything she chose to do.

She loved her sport, she loved competition. To be honest, when she started playing hockey, I was bothered by the commitment that was required from the whole family. Saturday mornings would be dedicated to Kay's sport, limiting us from doing anything else. But as it became clear just how good she was, I started looking forward to a future of following her matches. My side of the family is not into team sports and I've never seen the attraction of it. But to have a daughter who was such a winner was a new experience for me and surprised and excited me. All that future is now gone, though I have to say that Nattie is very keen on her hockey too.

I cannot begin to say how much these thoughts hurt, how much I miss Kay's future. Her character balanced out our family, her laughter, her smile, her energy, her cuddles. Without her we're incomplete and will be forever.

The Root of Unreality

On Sunday I took Nattie mountain biking through the woods, on Kay's mountain bike. She did very well covering 5km through wet woodland. But during the ride I couldn't help thinking that it should have been Kay with me. Kay was always the one who wanted so much to go mountain biking with Daddy. I'm currently sat at Bromma airport in Sweden, waiting for a flight home, so I had better not pursue this line of thinking or I'll be sobbing in my beer.

After Nattie had had enough I went on and cycled a further 28km. It was very wet and muddy in places, semi flooded in others. I had quite some fun riding the flooded sections, up to the axles of my bike on occasion.

When I got home I took a soak in the bath. The house was silent, Marion out in the garden, Nattie building her family tree on her computer. Then, in a moment of clarity, I realised what it is that makes a loss so unbelievable. Lying there in the bath, in a silent house, I had only memories of my kids. At that moment, there was no practical difference between Lauren, Kay and Natasha, all three being alive in my head. I have memories of Lauren, who is away at school, memories of Nattie, memories of Kay.

In principle all memories are equal. When we are away from our loved ones that's all we have of them, all that we carry with us. But all of us have an implicit contract with the universe, we trust that our loved ones are more than just memories. We trust that we can just pick up the phone and call them, walk into their bedroom and hug them, call out that we love them and know that we will be heard. And this is how I felt, lying there in the bath. That I just had to get out and walk to Natties bedroom to see her, reach out for the phone to call Lauren to talk to her, call out to Kay to hear her.

The loss of a loved one is a fundemental breach of one's contract with the universe. It is a betrayal of the worst kind. It means that you can no longer count on your contract with the universe, that when a loved one is a memory that there's no guarantee that they will ever be anything else, that you can never be certain that you will be with them again.

Of the ten years that Kay was alive I estimate that I was probably only in her physical presence for maybe 20% of that time, taking into account the hours that she was sleeping, at school, at friends, hockey, tennis and the hours that I was at work or doing other things. The other 80% of the time I just simply assumed her continued existence.

We all do it, all the time. It's standard operating procedure. And the root of my loss, the root of my feeling of unreality lies therein: I naturally continue to rely on my contract with the universe, naturally continue to operate in the "knowledge" that my loved ones are surely there for the holding. So, there I am lying in the bath in a silent house. At that moment, how can I possibly know that my loved ones are there for the holding? At that moment what is the difference between Lauren & Nattie & Kay? Actually nothing, for the truth is we cannot rely on our contract with the universe. All of our loved ones are reduced down to Schrodinger's Cat, occupying some virtual state that means that they may or man not be alive.

Think about it. It's very very very scary. But hopefully for you, as it was for Schrodinger, its merely a thought experiment, one that you can put to one side if it frightens you. For me, it's the root of my loss, my grief, my sense of unreality. It's the reality of my every waking moment, a reality that I cannot escape, a reality in which one of my cats is dead and the state of the others is uncertain when I'm not with them.

And that is very roughly how my loss feels.

Thinking of Kay

Just starting the first round of treatment for skin cancer, the first bead on my "kanjer ketting", if they did it for adults, and hoping that two beads will be the end of the story. I'll have to count how many beads Kay got, must be hundreds. But the thought itself is very sobering, everything that I've been through, that I'm going through now is nothing compared to what Kay went through. And she was always so strong.

I remember watching her during the radiotherapy. She was scared stiff by the idea, she really did not want to go into that room and be gamma-rayed. But she did it with simple raw strength of character, no fuss, no bother.

What a child. I miss her so very much. Better stop now or I'm going to be in tears in this hospital waiting room.

Blue Monday

It's now nearly 3 weeks since I stopped with the sleeping tablets. I'd expected that the side effects from stopping, sleeping badly, dreaming, etc, would have receded by now but they haven't. I had a terrible night on Saturday, dreaming that we were going to bury Kay and that I could't get my jeans off so I could change into a suit. I woke up completely stressed, so much so that I simply downed one of the lighter sleeping tablets to attempt to knock myself out for the rest of the night. The result was Zombie Rob on Sunday morning.

Then on Sunday night as I was drifting, trying to get to sleep, I had a perfect audio memory of Kay crying. Crying as she did when she'd had enough, crying for Mama, crying for me. It was a heart braking memory and, like a bad song, it kept playing itself over and over in my head, through the night and into the day on Monday. Of course, I slept very badly and waking up with that audio track in my head cast the day in a bad light from the beginning.

Last night I tried knocking back some Melatonin a few hours before bed, but that didn't help either. Its not clear to me if this problem is a side effect of stopping the medication or whether the medication was damping down symptoms already present. Or whether both things are true. But what concerns me is how long I can expect this to continue. I'm really close to the maximum amount of sleep deprivation that I can take, meaning that during the day I'm increasingly unable to do very much.

It has been suggested that I'm being rather too hard on myself, c.q. that stopping the sleeping meds is unnecessary and premature. I'll have to think about that, but now that I'm this far down the road I don't really want to give up, at least if either there's some other way of managing the problem or if things could be expected to improve on the short term. I'd really like to get back on my feet which to my mind means being free of props.

The other thing that has resurfaced recently is the strong feeling of disbelief that Kay is not here. It just doesn't seem right that she's gone, the hole left behind is too big to be real. I keep expecting to hear her, see her, feel her. She is way too real, way too strong to have gone from our lives. As I get access to more memories it seems increasingly impossible that she's not there.

Her death is old news to most of the rest of the world. But for us the whole thing remains incredibly actual.

Back Home

A quick update: we're back home. I have to say that for the first time ever I have the feeling that it would have been better if we'd stayed at home. The weather was not good, meaning that we have not seen the sun while we have been there. My back was a pain in the ass, almost - ha! But it limited what I/we could do. And in general the South of France does not have much in the way of indoor entertainment.

If we'd stayed at home I could have got treatment for my back quicker and just maybe I could have been mobile earlier. Certainly there's more to do at home when the weather is rubbish.

Regarding my back, the two best days that I have had in the last weeks were the days that I spend in the car. The Volvo is very comfortable, but perhaps most importantly I'd set the seat position to be pretty vertical with plently of curve in the back support. I also drove using a back brace. The result is that I spent two days sat upright, with a curved lower back and when I got out of the car each time I was merely stiff. Contrast with our sofas in France, which are low slung and very cosy, meaning very bad for a bad back. I spent quite a lot of time sat in a garden chair because it was the only apparatus that provided a vertical, curved sitting position.

This afternoon I have delivered on my promise to take Lauren to see "Harry Potter and the Deathly Hallows". I hate the cinema, let me be clear. I do not understand why the industry goes to all of the trouble of inventing superb quality surround sound when in reality one is surrounded by superb quality crunching sound. I sat through 75% of the film with my fingers in my ears, trying blank out the sound of pigs munching through buckets of popcorn. (Sorry, I've had a glass of wine and it's liberated my fingers).

Anyway, to the point: Kay hated Dobby. She wouldn't watch any Harry Potter film that featured Doddy. Every time I saw Dobby during the Deathly Hallows, I had to think of Kay. Dobby, the Hero. In the end, Kay would have loved him. And I struggled with my emotions, I sat there trying not to cry every time I saw Dobby. And of course, at the end when Dobby the Hero is killed, I had a real bad time. I thought, "Now Dobby is with Kay".

I must be going mad, completely barking mad.

A Hard Step

I decided to enter 2011 without the support of sleeping tablets. I'd already halved the dose a while ago, but attempting to reducing it further caused me to have some pretty bad nights. But now I've reached a point where it's time to start looking after myself more. The experience with my back the last week or so is a wake up call that I'm taking a serious physical toll from all that has happened and continues to happen. So, here's the first change: out with the damned tablets.

Easier said than done, though. New Year's Eve was easy, into bed very late. But since then my nights have been dream hell. I've spent the last nights never quite sure whether I'm awake or asleep, since my mind has remained active in both states. Awake I guess that it's occupied with recognisable stuff, but when "asleep" it's been seriously tripping. And the annoying thing is that I remember a lot of the crap it comes up with. For example, on Sunday I had a "dream" that we were attending the christening of my sister's baby (she is pregnant in reality). But the Queen was also present, for some reason or other. However, I was in way too much of a rush to worry about the Queen, I had an appointment with Alan Sugar to discuss taking part in the next series of The Apprentice. But while I was mixing with the other candidates there was a machine gun attack on the crowd and we all had to dive for cover...

And so I have spent the last nights. I had been warned that these tablets repressed REM sleep and that one could dream more when stopping them, but the words do no justice to the experience. So far I have not noticed any lightening of the dream effect, no tendency towards better, more restful sleep. So I'm starting to worry whether what I'm experiencing is a side effect of stopping the medication or whether its the underlyng condition that the medication was suppressing. Difficult to judge. I'd expect to start sleeping better in the former case, not in the latter case. The only positive thing I can say is that during my awake periods I seem to be able to prevent my mind spiralling off into a panic attack. Also, although I'm sleeping badly, I'm not too tired during the day. Still, this situation has to start resolving itself pretty quickly because I have to be alert enough to drive home on Friday, a 12hr trip.

Otherwise, not much new to tell. Marion has been very depressed the last days, worryingly so. She's perhaps a little better today, but she looks pretty terrible and her mood is generally awful. My holiday break has been royally screwed up by my back. I've barely been able to walk more than a few hundred metres and cycling seems like a distant dream. As a result I feel fat, slow, unfit and generally slug-like. Definitely time to get a grip on the physical and weight side of things, if nothing else.

The K Files: I want to KNOW

I wish that life could just have left me alone. I was doing just fine, thank you very much. Many many years ago I had a theory of what life was about. Based on "Jonathan Livingstone Seagull", "Illusions", "Zen and the Art of Motorcycle Maintenance", etc, etc, I had an explanation of the Meaning of Life that was comfortable and made me happy, particularly the flying bits.

But then along came divorce and my little theory was blasted to pieces. Nothing made sense. I'd dedicated myself to love, to loving someone and still, my whole world fell to pieces. A friend told me at the time that, really, there's no meaning to any of these things, shit just happens. I didn't like that idea at all. I continued to struggle to understand what was happening to me at the time. But I failed to find any rhyme or reason. Eventually I decided more or less that divorce is not something that needs philosophical explanation, it's just what one person does to another and thus does not fall into the metaphysical realm - although at the back of my mind I have to admit that I thought that was something of a cop-out conclusion.

Since then I've lived my life knowing that my personal philosophy had more holes in it than Granny's old knickers but, frankly, I felt no need to put more time and energy into something that was of dubious value anyway. And the older I've grown the harder that my view on the subject has become. "The Selfish Gene" has a logic all of its own. "Godel, Escher, Bach" puts the case for intelligence as a mechanism. "The God Delusion" summarized quite a few things about organized religion that had bothered me since my confirmation, although I wish to make it clear that there's a lot of stuff in Dawkins book that I didn't and don't buy at all. But still, all this stuff remained nothing more than an intellectual curiousity. Until a year ago. Until the 19th of September this year. Until Kay died.

And now it's no longer a curiousity, now it's a burning NEED TO KNOW.

The basic problem is that I'm not much good at belief. I have spent most of my life building a firewall against it. One of the things that struck me from my confirmation studies all those years ago was that religion is a logic trap, designed to capture and hold the believing mind. And as I learned more I came to realize that this is what most religions have in common. Sometime ago I read some interesting articles around the theory that certain sorts of ideas are in effect viral in nature. Like computers viruses, they are in fact packets of information that can infect a host, modify the hosts operation and replicate themselves. However, at the deepest level of my nature, I'm allergic to any form of outside control, as I'm sure that my dear wife will confirm. To me belief is the equivalent of opening up ports in my mental firewall, that will then expose me to the possibility of being infected with a 'religous' virus that will change me in some Orwellian way and will result in me losing control over my being.

The consequence is that I have therefore viewed everything from a minimalist, Occam's Razor, point of view. Concepts such as "The Selfish Gene", etc, have always seemed to me to be eminently sensible and complete descriptions of the world, anything beyond being speculation, ie the domain of belief. In the summer, when Hawking announced that he didn't need god to explain the creation of the universe, I appreciated his point. However, I also appreciated the rebuke from Jonathan Saks, who said that religions don't concern themselves with how the universe was created but with why it had been created. I can see both points of view but I didn't need either of them: it doesn't surprise me that there's no trace of god in the creation of the universe because there's no trace of god anywhere else and mankind can continue to seek explanations for things for which there simply may be no explanation.

But then Kay died and everything changed: there is nothing more that I want than to KNOW that Kay is with me and to KNOW that I will be with her again. I can't bare the minimalist view that Kay was only the sum total of the atoms in her body, arranged in a certain way according to the rules of genetics. I can't cope with the idea that all that personality, that gaiety, that originality, that beauty has dispersed and left nothing behind but echoes in our memories. It FEELS SO WRONG, but unfortunately that doesn't make it wrong, it only makes it the simplest explanation. But still, I don't want the simplest explanation anymore, it is not adequate to my perception, to my need. I want to KNOW that my Kaytje is still there. Of course, I can't know because if I could, Hawking would have found god in the creation of the universe.

I have been hanging here for weeks now (I started this blog entry ages ago). Desperate for Kay. But knowing that there's no evidence in the rational world that can sooth that desperation. No way of knowing whether the Kay I sense in my thoughts, have heard talking to me four times, is actually Kay or merely the cunning operation of a subconscious that has evolved elaborate ways to dull conscious pain, to offer hope, to ensure that its host carries on operating.

And then while driving to work a few weeks ago I was caught by the lyrics of a song by The Script, "Science & Faith":

Tried to break love to a science
In an act of pure defiance
I broke her heart.
And as I pulled apart her theory
As I watched her growing weary
I pulled her apart
Having heavy conversations
About the furthest constellations of our souls. ooh
And we're just trying to find some meaning
In the things that we believe in
But we got some ways to go.
Of all of the things that she's ever said
She goes and says something that just knocks me dead.

You won't find faith or hope down a telescope
You won't find heart and soul in the stars
You can break everything, down to chemicals
But you can't explain a love like ours.

Woohhhh
It's the way we feel, yeah this is real.
Woohhhh
It's the way we feel, yeah this is real.

I tried pushing evolution
As the obvious conclusion of the start.
But it was for my own amusement
Saying love was an illusion of a hopeless heart.
Of all of the things that she's ever said
She goes and says something that knocks me dead.

You won't find faith or hope down a telescope
You won't find heart and soul in the stars
You can break everything, down to chemicals
But you can't explain a love like ours.

Woohhhh
It's the way we feel, yeah this is real.
Woohhhh
It's the way we feel, yeah this is real.

Of all of the things that she's ever said
She goes and says something that just knocks me dead

You won't find faith or hope down a telescope
You won't find heart and soul in the stars
You can break everything, down to chemicals
But you can't explain a love like ours.

Woohhhh
It's the way we feel, yeh this is real
Ooohhhh
It's the way we feel, yeh this is real

--

Perhaps I'm looking in the wrong place for Kay? Perhaps I need to look into the place where our ability to appreciate art & music comes from? The place where we feel love? (Though my rational mind just whispers in my ear that perhaps these things are just artifacts of our complex minds, the consequence of having achieved a certain level on cognitive complexity).

I don't know. The only thing I know for certain is that nothing about the loss of Kay is emotionally reconcilable with the Occam's Razor view of our existence. No explanation that I can accept feels right.

So what does one do with a mind in this state? Inured against belief. Desperate to know the unknowable.

I so miss Kay, with every beat of my heart, with every microsecond that passes, with a burnished undiminished pain that will never die. I so need to know that she's with me. But my mind is being extremely uncooperative. How does one find a way through this to the peace that is necessary for life to regain any kind of quality? To knowing for certain that in some way Kay is always here?

Remembering Kay

I think that this is how Kay would want us to remember her. The video was shot with her camera, the effects chosen by her, her friend holding the camera.