Thursday 2 October 2014

Four years and counting

I wonder where she is? The reason I ask is that I feel her presence less often and less strongly as time goes by. I wonder if she's subject to time? Does she feel the minutes tick by as I do? Is she waiting to be with me, as I am with her? Or is she moving on? Rotating with on wheel of life? Is our world less relevant to her? And if she is subject to time, what does she do with it, I wonder? Kay could never sit still. If she is subject to time, waiting and doing nothing would be hell for her. She can't be in hell, so if she's subject to time, then what does she do?

And if she's not subject to time, I wonder how she percieves me? Does she see across all time? Can she wind backwards and forwards in time following the entire course of my life? Or does time run differently for her?

I wish I knew the answers to these questions. I try so hard to picture where she is now, what she is doing. Does she watch over me all the time? Or does she do other things? Can she watch over all of us concurrently? Or can she miss something? The answers to these questions depend of course on whether she is subject to / percieves time.

I dreamt about her a few nights ago. Man, I could hear her laugh so clearly and it lifted my heart out of the greyness that enshrouds it. Such a disappointment when I woke and the recognition that it was a dream crept into my head. Heart thumped back into the colourless emotional wasteland of the bereaved.

Her absence is a emotional black hole in my life that sucks in joy and burns it in a cold flame. I balance on the event horizon. It would be so easy to let that black hole swallow me up. Give in, let grief, misery and loss dominate. Stop caring. Become self indulgent.

On the other side of the event horizon is a normal life, a richer life, where its still possible to laugh and have fun. To be carefree. To live beyond oneself. But it's massively hard to even contemplate, or remember, when the black hole has its claws in you, when you struggle on the event horizon.

But lately flashes of light have beaten the darkness back here and there. Lauren going to University. Nattie going to high school. Enjoying the excitement of their new worlds. My girls make me smile and that's priceless.

Still, their happiness makes me wonder about Kay. I wonder how school would be going? Would she be in the top hockey team? How tall would she be? How many additional grey hairs would she cause?  And I wonder where she would be now?

Thursday 19 September 2013

Three years later

For the third time we're confronted with the anniversary of Kay's death and everything is still so raw, so painful. The ache in my heart and my longing to hold her again has not diminished one iota. I still have an almost physical memory of holding her, her arms around my neck, her legs around my hips, my arms supporting her, my face in her hair. I can still remember wondering how such a beautiful creature could be a child of mine. 

The world in which we live still seems to be a dark and terrible place, with some pools of light here and there. Lauren is one, Natasha the other. However the tone of life has changed. A sense of loss pervades everything. One can have a great holiday, but the fabric of the holiday, of one's memories, holds a feeling that things aren't right, that the joy one felt on holiday is compromised, corrupted, impure. 

These days it feels to me that behind the light there's always darkness. That light is transient and darkness rules. For the first time in my life I am almost fearful of the coming winter, of the return to short days and long nights. During the last weeks I have been almost desperate to soak up as much sun as possible, sitting outside whenever the weather has allowed until the light has all but gone from the sky. Perhaps it's because I've been sleeping so badly for so long now, that I've spent so many nights awake wrestling with my worries, beset by memories, that I've become almost fearful of the night. I can almost sleep more restfully during the day, when the light keeps the demons away. 

Looking back over the years I still have the sense that somewhere along the way I've somehow triggered fate's immune system. What other explanation can there be for all that we have suffered and lost? For the pain that we continue to experience? Random chance just does not seem to cover it. But then, if I turn down the self-indulgence for a bit and look around me, I see so many friends also struggling with insurmountable problems. A good friend in France with an undiagnosed and yet extremely debilitating disease. A young acquaintance with ALS. People struggling with their work in the most difficult times. What's happened to the world? When did it become so hostile?

A long time ago, I wrote on this blog that I felt that I'd slipped through into a parallel and much nastier dimension, that this 'slip' happened on a flight back from India in October 2009. Now, almost four years later, I still have exactly the same feeling. Sure, it's probably just a perception, but it really doesn't feel like it. Looking back it feels like a line in my life, a before-and-after moment. Before: a largely happy family, carrying its own cross, sure. But a cross that was no bigger and no smaller than anyone else's and that was in proportion to, in balance with the joys of life. Smiles that come naturally. A kind of happiness that's so implicit, no-one knows its there. After: a terrible and ultimately fatal battle to save the life of a deeply loved and dear child. A family scarred by loss, relationships strained to breaking point. Gloom and depression. A life into which one must pour energy just to get through the day. Happiness a transient moment that can no longer be assumed.

As I write this, I'm censoring the worst of my thoughts because what I've written already seems incredibly self-indulgent and down right bloody miserable. By now I guess that anyone reading this will be on the way to checking out. So, I'll close this line of rambling by saying that in the gloom of the night, at 3am when the demons are out and howling around my head, it all seems to me to be much worse than this.

Instead, I'll attempt to turn it around and look at the positive things. Firstly, we're all still here and, battered and bruised as they may be, relationships are still intact. Secondly, we're still surrounded by lovely people, friends and family, who care. It's a shame that it's not normal to go around letting your friends know how deeply you care for them and appreciate the support you get from them. I still see in my mind's eye our friends streaming into the house after Kay died and receiving deep, deep hugs from people who I didn't know could hug! Sometimes I wish that we treated each other like that everyday. What else? I don't know. Difficult day to be thinking about the positive. 

I still have the feeling that I'm connected to Kay, behind and above my right ear. It still feels as if Kay's got her hand pressed lightly onto my head. But I don't have as much sense of her presence as before. She feels more distant to me - which generates a horrible feeling of desperation in my heart when I think about it. I still talk to her in my head. Practically every day, when I look at her picture on the wall and kiss her goodnight or good morning, I plead with her to help me, to lend me the strength to get through the day, to face a life that has had so much ripped out of it and that seems so compromised. 

Unfortunately I don't think she can help me. I certainly don't have the sense that for all my entreating with her, that my fate has changed in anyway. I guess that the rules of her world are that we mortals have to get on with our own fate. To be honest, sometimes I feel a bit angry with her that she doesn't seem to be helping. Stupid feeling, I know. But I'm doing my utter best on all fronts and even a little bit of luck here and there would help enormously, even if it was just a mental boost. 

I guess it's time to wrap up here. Time to get on my bike, get out in the sun and see if I can find Kay somewhere on the way - as happened after she died. I long to curl up in her arms, I long for someone to take away the burdens I carry, even if it's just for a little while, just long enough for me to get some deep, restful sleep. 

I'm so very, very tired.
 


Sunday 17 March 2013

A Dream...

I was walking through a crowded department store, holding a four year old Kay's hand. For some reason we were hurrying to meet Leonie. Kay said something to me, which I didn't quite catch. So I looked down at her and said, "What did you say, Kay?". She looked up at me in that concerned way that she has and said, "Are you happy, Daddy?"

I woke instantly. It was so real. I could still feel the imprint of her hand in mine. Her way of talking, of looking, her deep concern, the seriousness that she sometimes had even as a four year old, the care and concern that she had for others...    

I burst into tears and woke Marion up. I'm now sitting downstairs writing this with tears streaming down my face. Hanging on to this painful dream is more than I can bear. But I can't bear letting it go either, as it's the most recent "real" memory I have of Kay. Accurate in every detail. As if this happened yesterday. 

No, Kay, I'm not happy. I miss you and sometimes I just can't bear living this life without you. It doesn't matter how hard I try, the hole you have left behind cannot be ignored, it cannot be filled, it cannot be coped with. It's just there, every day, every minute of every day, a yawning chasm in my life where there used to be a person of such warmth, such joy. I person that I love so very very much.

No, Kay, I'm not happy at all.

Friday 19 October 2012

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.


Wednesday 19 September 2012

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. 

Thursday 2 August 2012

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.

Wednesday 11 July 2012

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.