I'm preparing a photo display for Kay's commemoration service at the weekend. But every time I open a picture of her with Lightroom, I get stabbed in the heart. I can't believe she's left us. I can't believe that these pictures are all that I have left of her that my eyes can see.
Oh, oh, this is so unbelievably, indescribably hard.
Monday, 20 September 2010
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.
Tuesday, 14 September 2010
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.
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.
Thursday, 9 September 2010
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.
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.
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