The worst thing that could happen to me

My mind is still filled with confusion over so many things. But during the last days I have found myself thinking over and again how the loss of one of my children, the loss of Kay, is truly the worst possible thing that could have happened to me. I don't mean this in some impersonal, philosophical way. I mean it in a personal, crushing, full-of-individual-meaning way.

Perhaps without realising it, I have always seen myself as a father, looked forward to being a father, enjoyed every second of being a father. In an implicit way, being a father has been my life's mission. Indeed, there have been many other things that have filled my life with meaning, such as running a business or flying, and there have been times when these things were in the foreground, when I would have told you that they were fundamental to my life. But when I look back, it's always been my kids who have meant everything to me.

When Lauren was a born I wanted to be involved right from the start, as if she were some new gadget that had been given to my wife. I bathed her, cleaned her, baby-sat her, looked after her when she was ill and played with her. I read the "Secret Life of the Unborn Child", I followed her development with fascinated, experimentally based interest and, when her mother walked out of the door and left us, I went from working 50 hours a week to 24 and completely turned my life upside-down to put Lauren at the centre of it. I fought tooth and nail to retain custody of Lauren in the divorce that followed and, in the end, I did. 

Kay was born with a milk allergy which left her constantly screaming with tummy cramps. But it was about 5 months or so before we got that problem under control. In the meantime, when I came home from work, Marion would dump Kay into my arms and say, "Now it's your turn" and I would spend the rest of the evening and my share of the night massaging Kay's tummy and cuddling her to sleep. Then we found that Kay had a hip deformity which meant that her legs had to be kept in a special harness for six months or more. And then she got a nasty skin infection which was more or less the precursor to leukaemia. 

In a way I never really minded all of these things - I was looking after my kids and there's nothing more satisfying than that. Of course, there was tension and worry and fear and all the usual standard operating concerns that such problems bring. But I never felt that I should have been doing something else, that I was being cheated out of MY life. Through all of this I knew that there's no higher calling than looking after your children.

(I will note here that I've not mentioned Natasha. That's because Natasha, from the moment she was born, has not caused us a single problem. She was the perfect baby, born to a family in leukaemia crisis. She slept through the night, almost from day one, and ever since she has never needed more than her fair share of attention and has frequently got on for long periods with much less than her fair share.)

In the course of the years people have said to me that they see me as a natural father. I couldn't comment, except to say that that doesn't seem to be much of a challenge - to my mind anyone can be a 'natural father', it's simply a question of love and applied learning. But looking back now, perhaps I can see what they mean: I love kids and I especially love MY kids and NOTHING, not one single thing, could be worse than losing one of them. 

What they don't tell you about getting older is that your options shrink, that your life becomes cast in concrete and at some point you have to give up and simply accept what you have got. My life has become a fabric of responsibilities, commitments, dependencies and obligations to such an extent that there is no room left for alternatives without shattering that fabric. I despise people who fail to honour the fabric of their lives, who shatter that fabric for selfish ends. 

I look at the mess that my life has become and some part of me yearns to do it all over again and to do it right this time. But I cannot become what I so despise and so I have to learn to accept that THIS IS IT. There's no going back, there's no changing facts, there are no viable alternatives. My family is broken, we're missing 20% of our substance and nothing will ever change that fact. 

The worst thing that could happen to me, has happened to me and there is no escape.

Two years is no better than one year

Two years ago today the world fell apart and it's showing no sign of mending. My heart is just as broken now as then. I still keep hoping that this is some kind of nightmare from which I'll wake up. But alas. 

The first half of the day, and in fact the whole of this week leading up today, has been dreadful for a host of reasons that I can't explain here. It feels like some kind of awful conspiracy has been taking place, designed to metaphorically stick knives into the most raw, painful and unhappy areas of my psyche. The result is that I'm sat here feeling utterly bereft of Kay, bereft of happiness, bereft of any simulacrum of quality-of-life. 

On Monday we had an appointment at the Radbout Hospital in Nijmegen. The appointment was with Esther, the psychologist who supported us during Kay's sickness, and took us back to the very place where Kay died. It was an incredibly difficult thing to walk those corridors again, to think that the last time I took those lifts was to leave the hospital without Kay. I was beset by memories, many of which I'd rather forget. (Why is it that I have so many memories of Kay-the-patient and so few of Kay-the-healthy-child?). I remember so clearly talking with Esther in the ICU about Kay's potential death and more or less begging her not to let us become The-Family-Who-Lost-A-Child. And yet here we are, The-Family-Who-Lost-A-Child and it's even worse that I could possibly have imagined.

I'm sat here with tears flowing down my face, almost unable to write at all. The sea of churning emotions inside me no longer lends itself to written expression. There is so much confusion, so much pain, so many things that cannot possibly be aired for the sake of making things worse. My goal is to maintain the status-quo and that is hard enough. Don't even think about trying to make things better. "Talk to someone", I hear you say. Been there, done that. I think that I was starting to make my psychologist depressed - how very Woody Allen. All the "easy" stuff has been dealt with, EMDR for post-traumatic shock and memories and plenty of therapy for all the first degree psychological consequences of Kay's death. It's no longer these things that trouble me most. What troubles me are the "Why's?" and the implications of the "Why's?", specifically the implications of the fact that there are so many of them and they all remain unanswered. For example, why out of 356 days per year did what happened this morning have to happen this morning? Today, of all days! 

When I look at the pattern of events over the last years it almost seems to be proof of the existence of malevolence, a malevolence that focussed on us in October 2009 and is still acting on our lives today. Maybe one day I'll understand better what is going on, but at the moment I feel like a prisoner being tortured on the rack, unable to comprehend the questions being asked because of the pain and therefore unable to alleviate the pain.

But "Why's?" are not the only problems. Trying to maintain the status-quo is extremely hard, especially when I spend half my time wondering whether it would just be better to let everything fall to bits completely and start all over again. What is it about this life that makes it worth fighting for? It is a life riddled with pain, with sadness, with loss. Trying to keep it all together is so very hard. Part of the answer is that letting it fall apart would cause even more pain and more loss for those involved. Part of it is that there is still much of value in it. Yet another part is that I'm a fighter and I don't like losing and giving up is losing. So the choice is to either fight on to merely maintain a horrible status-quo in the vague hope that things will get better or to bin everything and gamble that what is other the other side is better, bearing in mind that generally it's a fiction that the grass is always greener... So far the fighter side of me refuses to give up and keeps bouncing back. I just hope that somewhere in the near future the malevolence turns its attention to other things.

I have to say a word for those of you who know me personally. All of this stuff that I have written about is going on more or less constantly and, like a nuclear reactor, requires careful, thick-walled containment. It is this containment that allows me to operate from day to day. But thick walls do have their disadvantages in that I can often strike people has being distant or indifferent to otherwise important things or that I can react strangely to certain events. Even Marion sometimes accuses me of being indifferent to topics that she finds essentially important. I can assure you that I'm very rarely indifferent. My seeming indifference actually has its roots in the opposite: that many things touch me deeply and strain the walls of containment, such that I must mentally stabilise them in order not to "go critical". A friend and colleague of mine recently experienced a day when my containment failed - I was tired, ill and very depressed - and I think he was quite shocked at what came out. These last years I have had to wrestle with near constant emotional overload and as a result my walls have become thicker and higher. Thus, if I sometimes seem indifferent or react strangely, please forgive me. I'm trying to maintain normal operations under continuing abnormal circumstances and it's sometimes not easy.

Finally, my thoughts return to Kay. I've mentioned in the past that I feel a connection with her in my head, just above and behind my right ear - it's almost as if her hand is sometimes pressing lightly on my skull, but then in my skull. In the last months this feeling has softened - it's still there, but more gentle, subtle. This morning, as I walked down the stairs for breakfast, I suddenly realised that it is much sharper, much more pronounced today. Sitting here now, the right side of my head feels completely different then the left side. Kay must be here. But I wish she was sitting on my knee, giving her poor old Dad a big cuddle. 

I miss her so very, incredibly, hugely, infinitely much. 

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.