Happy Birthday, Kay XXXXXXXXXXXX

I miss you so incredibly much. I could feel you snuggling with us in bed, this morning. But it's no substitute for the real thing, the sound of your laugh, the warmth of your body, the smell of your hair.

I love you so very very much, my beautiful girl.

Happy Birthday from your Daddy.

The Fear of Fear Itself

Lauren and I have had a couple of Kitesurfing lessons over the last few days. Great fun, especially because we're doing it together. But this morning I more or less had to drag myself to the second lesson. And during the lesson I found myself looking at my watch to see how long it would be before the lesson was over. And this is not just limited to Kitesurfing. We have brought our Laser 2000 sailboat with us on holiday and I also find myself hesitating to use it in even vaguely challenging circumstances. This afternoon the wind has been very strong, certainly in the "adventurous" range and I didn't really dare to go out on the water. 

I'm not used to feeling like this, at all. Normally, the idea of learning something new, something fun and adventurous would have me bouncing out of bed and counting down the minutes until I could start. Normally, I'd be happy to push the envelope with the Laser, to find out more about sailing it in adventurous conditions, especially in the relatively safe environment of a lake. I've been debating with myself all day about why I feel like this. Why, the truth be told, I seem to have become afraid of anything the involves an element of risk. I would have argued that it's not in my nature to be fearful. Although I have always felt fear when doing stuff like aerobatics or windsurfing, I've always felt that a careful and reasoned approach would lead to minimal risk. And it always seemed to me that if other people could sail or fly in given set of conditions, then given the right training or level of skill and preparation, so could I.

I think that the answer is possibly relatively simple: in the last years I have had no choice but to face the worst fears possible. Not only this, but my fears were realized, the worst thing happened - something that had never happened to me before. While Kay was ill, my careful and rational approach to facing down the mind numbing, body paralyzing, all embracing fear of losing her was in the end no use - I lost her anyway. As I sit here now, writing this, I can feel the residue of that fear still in my system. I can so easily recall the moments when it seemed as if my blood had turned to liquid fear, when my heart seemed to be circulating that fear to every extremity of my system, when if someone had merely clapped their hands I would have broken the record for the 100m sprint. I feel as if I've developed an allergy to being scared, that my very body has now become afraid of fear itself.

If so, this explains a lot. It explains why I've more or less completely lost my interest in flying, why I find it difficult to summon up the will power to take the Laser out. It explains why I find my job more difficult now than 3-4 years ago, why it takes me more energy to face the day. It explains part of why I find it difficult to sleep - I often find myself thinking about all the various things that could go wrong and then I start worrying about them, etc. In summary, it explains why I've become so afraid in general - I've been so throughly beaten up by fear that I'd just rather do anything I can to avoid being faced with it.

Writing about it makes this sound all very obvious and explicit, but in fact it's not. It's actually so subtle that it's taken until now for me to realize that somethings going on, the trigger being finding myself looking at my watch and hoping that the Kitesurf lesson would end before I had to try water-starting again and thinking how strange it is that I feel this way. I suppose that I should consider that this is progress. I don't suppose that a year ago I would have even considered trying Kitesurfing - in fact, I just remembered that that's true, a friend challenged me to try it last September and I backed down. I have to hope that eventually the fear of fear will pass and that I'll be able to return to being "me" again, because I've always considered my readiness to do adventurous things a fundamental part of my nature. 

I continue to be surprised and shocked by the depth and breadth and sheer insidiousness of the consequences of Kay's death and the profound effect that her loss has had on my very nature. I've been saying for quite sometime now that I would like to live a simpler and quieter life. I think that I've just understood a significant component of that desire.

How I miss Kay

I'm missing Kay is very badly at the moment. She's constantly in my mind's eye. I see her hurrying around, hockey stick in one hand, school bag in the other. I so miss her lust for life, her energy and presence. I can smell her hair, feel it brushing on my face. I feel her snuggled up against me, hear her laughing. And I miss her more than ever.

Marion recently wrote that Kay saw everything as a competition. I was amazed and thankful for this observation as it indeed is true and I had forgotten. She spent her life competing in one way or another and she usually won - even if it was occasionally by bending or changing the rules. A friend of Kay's recently also wrote a small piece called "Kay the Boomerang", about how for her Kay keeps coming back. It is a beautiful piece of text and reflects a beautiful thought. And how I wish it were so, that my Kay would come back.

I'm writing this in a public place so I have to curtail my musings before I end up in floods of tears. In a few short months it will be two years since Kay died and I still cannot believe it. Although I'm writing less these days, it's not because I feel less but because I have run out of words to describe the life that I now live. As always, your support and kind thoughts, past and present, remain a source of bouyancy in what otherwise remains a stormy sea.

Perspective

I saw a comment on Facebook the other day: one person posted a funny video and another remarked that they were happy to see this video since they had seen too many miserable posts recently. I have to say that whenever I write a depressed or miserable entry in this blog I always worry that all I'm actually doing is convincing people that I've lost the plot and turned into a complete sat g*t. So I'm going to try and write a counterpoint to my recent depressed and miserable musings, partially to try to convince you, the reader, that I'm not completely off my rocker, but also to try and talk some perspective into myself.

We arrived at 1am this morning in the south of France for a weeks holiday. I'm sitting here now with a fantastic view in bright sunshine, feeling extremely tired, probably since I did most of the driving and also because I've still not shaken off the 'flu bug that took me out last week. In fact for the last hour or two, I've been sitting very still, just "listening" to the tiredness coursing through my mind and body. I really cannot remember when I've ever felt so tired before. It feels like it's "raining" tiredness in my head - there's a sense of it streaming down and around the inside of my skull. I can feel my pulse ringing my brain like a bell and in the teeth of my upper jaw. My eyes are gritty, my vision "glazed", my mind is foggy and feels like it's draped in a damp, grey blanket. There's tension in my chest and I'm very far from being relaxed. The rest of my body feels like it's been lightly beaten all over. Conclusion: I'm absolutely exhausted.

Therefore I suppose that I should not be surprised that I'm depressed and miserable. I think that perhaps one of the biggest changes between the "normal" life I had before Kay died and my life today is that previously being happy and positive was a natural state, it cost zero "mental balance" energy, it just was (and this is why people with "normal" lives often fail to appreciate normality - "normal" costs zero mental balance energy, it just is). Since Kay's death the opposite is true: it seems as if my natural state is now grief-stricken & heartbroken and that to be positive and happy costs energy. Therefore when I get tired, misery and depression get the upper hand. 

I suppose that these two things combine with each other as well, being tired leads to depression and depression saps one's energy, generating tiredness. My feeling is that there's a non-linear relationship involved, like some kind of lift/drag curve (for the pilots among you) where the more tired you get the more rapidly the depression increases and the effort/energy required to overcome the total effect grows rapidly. For me the solution to feeling miserable/depressed is always exercise. Getting out on my bike or getting on the cross-trainer with some loud music always helps me feel better. But the mental effort it takes to drag my ass off the sofa on onto my bike rises dramatically with tiredness/depression. Plus, this kind of tiredness often goes with some kind of physical limitation, e.g. feeling ill or back problems. And guess what? This last week I've had both - 'flu and my back being "difficult" again. Both of these things preclude exercise, which means that currently I remain bathed in my fug of misery and depression. 

There's one other potential avenue of relief: hugs and TLC. But when Lauren's away my source of hugs is halved and the concept of TLC hasn't arrived in our house yet - it's every man for himself around here.

So the perspective that I should have is that dealing with grief is a slow process that involves two steps forward and one, two or three back. I guess that during the last few months there have been a few backward steps. I suppose that this is nothing but normal, seen on the longer term. Unfortunately it's very difficult to live from day to day in these circumstances with only long term perspective as a guiding light. 

There. Was that a less miserable post? Or do I need even more perspective?

Need to write, what to say?

I'm laid up with a bout of 'flu that's knocked me flat for the last 3 days and doesn't seem much better today. It's probably a indication of the fact that I'm physically and mentally extremely run down. The last months have been and remain very difficult. I know that recovering from the loss of Kay was never going to be a linear process, but it feels like I have gone practically back to the beginning. The pain is unbearable, I have been in tears so often recently.

A few weeks ago a colleague rushed into my office, very upset, to say that his daughter had been diagnosed with diabetes and that he had to rush to the hospital to hear more about the subject. This had a dramatic effect on me, I flashed straight back to the two times in my life when I myself had receieved such news - the last time also at work. My instant reaction was "if only Kay had had diabetes". I know that I should probably have put my colleagues situation first, after all his news was no small thing. But I was absolutely blindsided by the flashback, by the scream of desperation and longing that I felt, by the bone deep need to change everything. If only Kay had had diabetes.

I spent the rest of the day struggling with tears, sat at my desk, behind my computer. I couldn't concentrate at all, I just tried unsuccessfully not to cry. When it was time to go home, I got in the car and drove through a veil of tears and when I got home I collapsed on the sofa and sobbed my heart out. I miss her so very much, oh if only I could find the words to do those feelings justice.

Life has been just so difficult these last months, the most difficult period since the weeks before and after Kay died. This time of year is also difficult because it was the time of hope, of the bone marrow transplant, of the days when everything seemed to be going well and the trees turned green while we watched from Kay's window. Now to watch spring set in is to be reminded that all that hope, all that investment we made in believing in a future for Kay, came to nothing. I think that if it wasn't for Lauren and Natasha, I'd be ready to find a different life. If my heart stopped of its own accord, I would welcome the silence. DNR. Organs available.

I suppose that I should really reflect on my own words here and conclude that I'm very depressed and do something about it. Part of the depression is perhaps temporary in that I'm so run down and not well at the moment, I guess. But part seems inescapable - no matter what, I'm doomed to have to carry the loss of Kay with me for the rest of my life and that seems utterly unbearable at the moment. So I'm really not sure what there is left to be done to lift the depression. I've done all the talking to the psychologist that seems helpful. I've burnt the ears off all of my friends. Right now, it seems that nothing has helped, that I'm still bathed in inconsolable, uncontrollable grief.

Even after 18 months I can't believe that she's gone. I still have the feeling that she's just away for a weekend and will walk in the door any minute. This really can't be happening, this really can't be my life. I want to wake up, I want to go back, I want anything that will take this pain and suffering away.

Don't believe everything you read on the Internet

I'm stuck at an awful impasse. My head is bursting with stuff that I need to talk or  write about, as I have done in the past. The problem is that fewer and fewer of these things are about the direct consequences of losing Kay. Increasingly I'm struggling with the indirect consequences, problems and issues that have arisen or are arising as a result of losing Kay and that involve other people or things outside our immediate private lives.


The internet is a wonderful thing and this blog has helped me enormously during the last couple of years. But it's now reached a limit. There are things that one simply cannot blog about if one is not to upset others or make matters worse. The effect of this limit is that really, you can't believe everything you read because stuff that affects other people or that would make things worse is being filtered out. The picture that you're getting is missing information necessary for a complete understanding.


On the other hand, one could argue the contrary: that by respecting the limit, one is forced to take a more balanced approach to sensitive matters and that therefore the picture that is conveyed is more accurate to the underlying nature of the situation. I don't know. All I know is that I'm struggling with a load of things for which I simply have no outlet. 


I dare not go further. 


What I'm learning in general is that the loss of a 10 year old child, the loss of my Kay, has repercussions that last longer and go much deeper than I could possibly imagine. We spent last week in France, at the house where the kids have spent so much time playing and growing up. Where I have taken some of my favorite photos. Where, when Kay was being treated for leukemia the first time around, we used to go because we got so much peace from just being there. 


However things have changed. It's not the same anymore. Kay's absence is much louder there, the clearest change being that Natasha has lost her playmate. Instead of building huts and running around outside with Kay, she now spends more time indoors on the computer, in a book or in her own world. She doesn't seem to mind, but for me its a source of constant pain. 


Last Sunday I was feeling extremely depressed and it occurred to me that my overall happiness peaked during the summer of 2009. We had a couple of lovely weeks at the house and then a week on Elba. I sailed the Laser with the girls across the bay and we lay on the beach at night and watched the August asteroid shower and we were a largely happy family. The girls were all at an age of simplicity and were a delight to behold. I would not have possibly been able to recognize this at the time, we had our share of family problems, but looking back I realize that I took so much enjoyment from all three of my children, without even realizing it.


And so the recognition came last week that I am truly and firstly a father - that's the thing that contributes the most to my "quality of life". Losing Kay means the loss of so much of that quality of life and I cannot possibly imagine a summer in the future where I'm ever likely to be as happy as I was in 2009. Plus, there's all the other shit to which I have alluded, that flows and flows as a consequence. It's a sobering thought to realize that the chances are that most of the happiness in your life is behind you.


On a final note, so far in this process of grief I have largely been spared a sense of regret. But this is now changing. I look back on the last 10 years of my life and think what I complete idiot I have been. Again, I reach the limits of what can be blogged. But suffice it to say that there were moments that I could have made different choices and that I should have made different choices. Yes, I know this is all in the past, but we are ultimately the sum of our actions and too many of mine have been ill-considered.


I may not have been able to do much about the length of Kay's life, but oh how I wish I had "grokked" it more deeply, more slowly instead of running around doing a load of stupid things.

Black Days

I guess that in some ways I'm slowly healing, at least judging from my "need" to write blog entries. However part of the reason that I've not written is that since the start of the year I have been extremely busy with the business and either been too busy or too tired to write. So it's not entirely good news that I'm writing less frequently.


For the last few days though I have started to miss Kay more and more. I know that recovering is a non-linear process, but I seem to be taking a huge hit at the moment. Life seems to weigh so heavily, every breathe an act of will. There seems to be no light at the end of the tunnel and no hope of finding light in the near future. Recovering from the kind of grief that I/we carry is a marathon that one begins without knowing where or when the end will be reached. Right now it's a marathon that I just don't want to run any more. I'd just like to lie down next to the road, give up and sleep. 


I tried to talk to Marion this morning, but the moment I opened my mouth I triggered her grief and I ended up listening to her instead of talking about how I feel. This is understandable, it's been the dynamic in our relationship since Kay died. But right now I could do with someone to lean on myself, a shoulder to cry on. I feel so bad, so hopeless and so incredibly tired of this life.