Formalities

We will celebrate Kay's life on Saturday 25th September. We're still planning but it is pretty certain that the formalities will start around 12:30 in Maarheeze.

Broken Heart

I'm slipping away further and further into grief. Thoughts shoot into my head that pause panic attacks, over and again. I'm terrified about what we have to do this week and the continuing pain that that is going to add. For the first time in my life I don't feel strong enough to do something or face what has to be done.

Proof of the Nonexistance of God?

I've had a terrible day. The details are not relevant, but suffice it to say that shit seems to be piling up on top of shit. That Kay's situation is so bad I would have thought it should be enough trouble for any mortal soul. But I seem to be being targetted by some kind of black hole of misery. Independently of each other, two other problems have arisen. The synchronicity is absolutely unbelievable, I simply cannot get my head around the idea that so many things can go wrong at the same time.

I'd thought for sometime now that Kay's illness is evidence of the mindlessness of the universe. There's no logic to it, there's no rhyme or reason, there's just bad luck. Like most things that happen to people, this is just the expression of statistics. People get cancer, kids get cancer, some of them get leukemia, some of them get cured, some of them relapse, some of those that relapse get cured and some don't. A few end up in comas in intensive care. It's just statistics at work, no master plan, no creator fooling with our lives. There's no lesson in it except that shit happens, in reality as well as statistically.

But the events of today have begun to stretch this explanation. In Hitch Hikers Guide to the Galaxy, Douglas Adams introduced the Babelfish - a creature that once introduced into your ear would translate any spoken language directly into brainwaves, thereby allowing you to understand anything spoken to you in any language. It was argued that the existance of the Babelfish was evidence of the nonexistance of God. The reasoning went like this: "I refuse to prove that I exist", says God, "Because proof denies faith and without faith I am nothing". "Ah", says Man, "The Babelfish actually proves that you exist and therefore, by your own reasoning, you don't. QED".

The combination of recent events seems to me to be so bizarre, so fringe, so statistically unlikely and so personally targetted that either I'm a statistical freek or that I'm getting some very personal and unpleasant attention by some divinity. Perhaps in the future they'll open an anti-Lourdres in my name - come and visit and have your life turned to shit, your good health reversed. In fact, I'm starting to think that the Babelfish argument applies: I'm so blatently being "Job-ed" that this can only be evidence for the non-existance of God.

The thing is, I'm not going to give up. It's not worthing giving up. We've come so damn far, we've been through so much, we're never going to quit because that would be too easy, the cowards way out.

So, do your worst, you divine bastard. If this is how you treat people, if this is how your expect us to live our lives, then I don't want to know you. You're not fit to be a God. And by revealing your hand in this way, you vanish in a puff of logic anyway.

Who stands for my Kay? Who takes her side? Who biases the roll of the dice in her favour? That's someone I'd like to meet, some being with compassion, some being who looks at my daughter and values her strength, her fight, her determination. So far it's only been people who have stood for Kay. The medics, our friends and family, strangers with compassion.

If we can be tortured like this, what counter balances that out? And why isn't the counter balance working? Hey, counter balance, I'd trade everything else that's up in the air for Kay's health, do you hear me?

Or does it come down to Occam's Razor: is it statistics and that we're merely extremely unlikely victims of circumstance?

Kay. Darling. Come back.

The Limits of Human Emotions

Yesterday I found myself feeling cheerful. A very strange thing, how can one possibly feel cheerful when the life of one’s child is hanging from a thread? At the time I was walking over to the McD house to move some stuff around and this gave me some time to ponder the subject. It struck me that if one considers that Quality of Life can be measured on a scale of 0 – 10, where 10 represents the very best things that we can experience and 0 the very worst, then the “reach” of human emotions (or maybe just my emotions) is about 3 wide.

In other words, it’s possible to be (very) unhappy while having essentially a very good Quality of Life (“money doesn’t buy happiness”), but equally it’s possible to be cheerful when Quality of Life couldn’t be worse. This theory also explains why it’s so difficult for me to tell people how I feel. In normal life (eg Quality of Life 5), someone might ask how I feel and my reply might be “tired”. But in our current circumstances ( QoL +/- 0), the same word “tired” refers to a depth/sort of tiredness that is entirely other.

I’m not doing a very good job of explaining myself. Let me try to put it differently. In the past I’ve had panic attacks, usually business related, usually at 3am. They tend to feel like being electrocuted by mains voltage and usually the primary effect lasts maybe 5 minutes. I’ve had periods of huge stress that have lasted maybe an hour or so and I’m able to recognize the symptoms. In the last days I’ve had panic attacks and I’ve had periods of huge stress. The thing that I’ve noticed is that the feelings and the effects that go with them are no stronger than in the past when I’ve had them for other reasons. The major difference is the frequency of the attacks, not the intensity. So my conclusion is that, at least as far as stress and panic attacks go, I have reached (and thoroughly explored) the limit of my ability to respond.

But this is not necessarily what I’d expected. With my child on the edge of death I’d expected to feel more intense emotions. With my child on the edge of death, I’d never expected to feel cheerful. And this leads me to conclude that we (or maybe just me) have a quite limited capability to emotionally respond to our circumstances. I’d always thought that our feelings would run proportional to our circumstances so it’s a big surprise to discover that that is not the case. Also, it kind of leads me to feel that I’m short changing Kay, that the fear of losing her is actually not greater than other extreme fears that I’ve had in the past, whilst the circumstances are far worse than anything I’ve ever encountered. But I guess that that’s compensated by the frequency of the panic and stress attacks.

There’re other consequences too. We have been talking quite a bit to the mother of a child who’s in the IC for a serious but not life threatening problem. I have often seen the mother, for whom I have a lot of respect, with tears in her eyes struggling not to breakdown during the last days. I’ve felt quite a few times like pointing out to her that she has no reason to be in tears, her kid is going to be out of here and fine. But of course, while her circumstances are better than ours, she’s at the lower extremity of her emotional response, which puts her into the same bracket as us emotionally whilst being in an entirely different league circumstantially. A damn good reason not to chastise her.

Anyway, Kay’s room is now full of “white people” (Kay's words) who have come to do the procedure on her lungs. I need to pay attention. And I need to be prepared for another round of massive stress and potential panic attacks.

What a terrible week

Kay may have had a stable week, but I've had a very bad one indeed. On Tuesday night I didn't sleep a wink all night. It was a very strange experience. I was extremely tired but not at all sleepy. It felt like my body had forgotten how to go to sleep. Everytime I closed my eyes, instead of drifting away into sleep, I was just left staring at the inside of my eyelids, completely awake. I did everything I could tink of to try to sleep. After the first hour I took one of the over-the-counter sleeping tablets that I've used with success before. No effect. Then I tried adding Melatonin to the cocktail. No effect. Then I tried listening to music. No effect. Paradoxically, I didn't bother trying to read because I knew I was too tired to concentrate. Wierd.

The result was that on Wednesday I was completely broken. I had an appointment at 7:45am, but I couldn't get out of bed in time. Everytime I stood up the world started spinning to the extent that I felt nauseous. I had stuff to do so eventually I scraped myself together and managed to get to the office at midday. Once there I discovered that I wasn't really much use. I had to read a paper for someone and the words just blurred before my eyes. I had to read sentences three times before they meant anything to me. Jeez. Still, I got done what needed to be done and then retreated back to the hospital.

Wednesday night I slept at the McD house. This was marginally better, I managed to get 6 hours or so of 'normal' sleep. But on Thursday night I again couldn't sleep. Thursday was our wedding anniversary. Marion suggested that we eat together and spend the night at the McD house. Given the disasterous evening that we had the last time that we tried the same thing, I was pretty cautious about the idea. I negotiated it with Kay, who appreciated that it was our anniversary. And I instructed the nurse to not let Kay phone us via Skype. If she need us then the nurse should phone. We also agreed with Kay that we would come and tuck her in when we came back from eating.

In the end we had a good evening. The only problem was that we made the mistake of telling the owner of the restaurant that it was our anniversary, with the result that we, or rather I, left the restaurant rather the worse for wear. Thus, when it came to trying to sleep, my lack of sleepiness was compounded by a growing headache. And so I spent the night trying to find some way, some angle, some pattern of thinking or even not thinking, that would allow me to get to sleep. No luck, I saw every hour of the night.

Since I had to drive from Nijmegen to the office and my new laptop was waiting for attention and bearing in mind that I had to prepare a financial planning update, I eventually gave up and got out of bed early. I arrived at the office with enough time to sort out the basics of the laptop and install MS Office before everyone else started to arrive. But frankly I felt dreadful the whole day, dizzy, nauseous and disoriented. It was extremely difficult to concentrate on anything. Eventually, I gave up and went home. I dozed on the bed for an hour or so and then lamely blundered around the house for a while, then ended up continuing installing my laptop. Eventually Nattie & I went to bed at 9.30pm or so.

I'm sat here now feeling like there's an electric current of tiredness running through my head. I'm going to do some cycling to see if that can either improve my head or make me tired enough to sleep. But I've decided to cycle inside on the simulator as I have no idea how far I'm going to feel like going and I don't want to run out of juice 50km away from home. I've also arrange to get a (fantastic) massage this afternoon to see if that can help.

For me personally, this is the worse stage of the whole story so far. The only major light on the horizon is that it looks like the business has some interesting opportunities developing. But that aside, I have never felt worse in my life and I have no idea how this tiredness will resolve itself. I have no choice but to continue what I'm doing, both home, work and Kay. But it's never been harder than now. 

The Quest for Mental Equilibrium

I've just spent 2 hours pounding round one of my standard cycle routes, trying to burn out of my mind all negative thoughts about Kay's current situation. This is tough because it means letting my fears out and confronting them, telling myself that each fear is unfounded for this or that reason. But one's mind can work pretty hard at pulling one down and my counter arguments are weakening. I find my mind thinking truly dreadful thoughts that I can't bring myself to mention here and my defenses against such thoughts are tired.

But cycling is very theraputic, although about half way round I was fighting myself so hard that I was hammering along at 34kmph with my heart rate running at +95% hr max. I could feel that given my current state this was not doing me much good so I slowed down. Less mentally intense, but less likely to burn me out. I arrived back home having partially cleared my mind, but not to the usual extent. Still, better than nothing.

I sat down in the kitchen to drink and eat something when the phone rang. Marion, in a tense voice (oh-oh), telling me that Kay wants to talk to me. Kay, crying, says: "Daddy, I think that I'm dying. I feel like my body is giving up."

I'd just spent the last 120 minutes trying to convince myself that this indeed is not the case. And I'd not been entirely successful. Now how to do a better job with Kay? And Marion?

Well, there's no substitute for honesty. I told Kay that the future is not certain and that we don't know how this will end. But that at the moment there's no reason to think that it won't end happily, no reason to think that she won't recover. I explained that this fight is in our heads and that's where these thoughts come from and that we have to try to be strong and to fight them. This is what we can contribute to the battle to get Kay healthy again. I told her that a week of the pain that she's had plus being locked up in the same room for seven weeks is enough to make even the strongest person miserable and to make them doubt that they can get well again. I said that Mummy & Daddy feel it too, that we are also very low. But that we all have to do our best and be strong and think positive thoughts.

Kay came around. She is indeed a fantastic child and she pulled herself together. I promised that we would continue to support her and offer our strength and love all we can. She said that she felt better, that she hadn't got so much pain from her bladder today. But she said that she's very tired and I told her that that will also contribute to her feelings.

I then had to do a similar job with Marion, who is terribly upset with the idea that Kay has been carrying these thoughts around in her head. I told Marion that she must try to find some mental equilibruim since Kay needs us to be strong. Marion too did her best to pull herself together.

Now, I guess that I just need another couple of hours on my bike...

The Devil's Joke

I've said before that I feel as though I'm living in Hell. I still have the creeping feeling that my flight back from India last October was actually shot down by a Taliban ground-to-air missile over Afghanistan, that I died at 36,000 feet and that since then I have been living in Hell.

And what a perfect sort of Hell is it, one that Dante could not and did not imagine in his Inferno. This Hell is not about Fire and Brimstone. This Hell is about subtlety, confusion, disorientation and plucking my deepest, most painful heartstrings. In this Hell everything is just like my previous life, only twisted in some Machiavellian way. My daughter is being tortured for no reason that I can discern, there's nothing I can do to stop it, there is no price that I have been asked to pay to stop it, the torture is just going on and on and is seemingly endless. I'd rather be roasted over glowing coals. But the even more confusing and disorienting thing is that I can still talk to other people who are not living in Hell. The perfection is complete!

But the twist in the story is that Hell offers you an the opportunity for an evening off. Last week various members of the professional staff at the hospital told Marion and I that it was essential that we spent time looking after ourselves. Whether or not this was a concerted effort to get us to think abouts ourselves or whether it was just coincidence, I don't know. But the end result was that on Monday evening Marion suggested that she & I had dinner together on Tuesday evening, followed up by a shared night in a hotel. The moment that Kay heard about this idea she started putting up roadblocks. So we arranged for Lauren to babysit her for the night and we assured her that we would be close by, etc.

Tuesday evening, Marion arrived in Kay's room around 6pm together with Lauren. The idea was that we would leave at 7pm to eat and find out if we still had a relationship or whether we were back to our blind date origins (Yes, Marion & I met on a blind date). Kay more or less immediately started kicking up a, medically justified, fuss. Marion gave her her medication too fast, as a result of this gross mistake Kay was now feeling sick, it was all Marion's fault, what a god-awful mother she is, now she needed to sit with Daddy, etc, etc.

The duty nurse was absolutely adamant that we were going to go out. I think that she would have bodily thrown us out if we had shown any sign of weakness. This nurse is very involved with us and is an absolute wonder and promised to make sure that Kay was Ok, etc. So off we went, all full of the idea that we could have a normal evening and enjoy ourselves, full of the idea that we'd been given an evening off from Hell.

We checked into the hotel and rapidly did what any married couple who'd not slept in the same room for six weeks would have done, we headed for the bar and the resturant. Once seated and equipped with double-gin-and-tonics, we rapidly discovered that, apart from Kay, we had nothing to talk about. Worse than a blind date, thus. I was too tired to talk about the business and, frankly, everything else seemed irrelevant. But fortunately the problem was solved for us by Marion's phone, which kept on ringing. It turns out that Marion, having better social skills than me, is constantly being phoned by her circle of friends. I didn't know this so it came as quite a surprise to discover that I wasn't even offered the opportunity not to have a conversation with my wife, other people filled in the gap for me.

In the end I retaliated by making calls of my own. So you can imagine the scene before you: a couple married for 10 years sharing a table with each other for the first time in months, talking to anyone else but each other. Shame this principle didn't extend to the bedroom, I would have been rather curious to end up sharing it with a bunch of Marion's friends... (but probably too tired to do anything other than watch)

Anyway, this pretty picture didn't last. Shortly after we'd finished our starters, my phone rang. Obviously it wasn't any of my friends, so the only alternative I could think of was Kay. And I wasn't wrong. She phoned me, screaming that she was feeling sick and that she felt that she was going to throw up and that she needed us there with her, etc. I tried to calm her down, I said that Lauren would look after her and that the nurse would give her a big hug. But while I was spouting these homilies, Kay threw up. I ended up with Lauren on the line who told me that Kay had thrown up her NG tube. I told Lauren that I'd leave them to it.

About an hour later Kay phoned Marion. This time she was upset and angry that she had phoned home to talk to Natasha but that there was no answer and how could Natasha possibly not be waiting to talk to her? Marion had a hard time talking her out of her tree but eventually got her quieted. A little while later Kay phone Marion again. (Now at this point you may wonder why we were answering the phone at all. Thing is that Kay was phoning using Skype which reports a "Blocked" caller-id. Since a blocked caller-id could be anyone, eg our security company, we felt that we had to answer). This time she was upset and angry that we had dared to leave her and that she was feeling terrible and when were we going to be back, etc, etc.

By this time Marion and I were ringing like bells with guilt. We were both sat at the table fighting back tears and feeling like very neglectful parents. I mean, how could we possibly put an evening of not communicating with each other and not engaging in any other sort of (social) intercourse in front of dutifully looking after Kay? Just what sort of people are we?

The whole thing was a huge disaster. We retired to bed, tired, miserable and feeling very guilty, with Kay's accusations of parental neglect burning our souls. We agreed that the next time that we wanted to eat together we should just get an Indian take-away and eat it in Kay's room, the path of least resistance.

So the Devil's Joke is this: A night away from Hell is worse than Hell itself.