Man, This is Hard

I think that you can probably tell from the reduced frequency of these blog entries that we did OK in October. But in the last weeks, and certainly the last days, grief has been weighing on me more and more. I have a load of things that I planned to do today but they have been pushed aside by the overwhelming sense of loss that I yet again feel. I walk past Kay's picture on the wall, the picture that so perfectly captures her, and it seems impossible that she's not here. I know that I've said these things over and again and that repeating them has little value, but I still feel a sense of incredulity every time I realise that she's not here to be hugged, to give me a hug.


I just keep thinking that Kay was so full of life, so fit, so energetic. She wasn't a complainer, she got on with doing stuff, whatever it was that was on her mind. She lived her short life to the full, awake early and immediately busy. The whole day long doing things until she fell asleep, often even before her bedtime out cold on the sofa. She always fought her corner, always wanted to win (even if that meant changing the rules), was always determined. She had so many setbacks but she never complained about her lot, she just got on with doing her best. How can it be that such a wonderful child can lose their life? Why on earth have we not been allowed to see how she would grow up, what she would do with her life?


As time goes by this is one of the main themes that plays in my head. I'm so sure that Kay would have become successful at some kind of sport, hockey probably. She had the physical make-up and fitness for it, the mental drive and determination. Whenever I'm at the hockey club or playing tennis I feel her loss so intensely, I feel that I've lost an entire future that would of been a joy to behold. Even more so because of my three children, Kay was the most different from me. I've never been good at sport, I've never been (and still am not) a gregarious social animal, I've never been so full of the kind of energy and drive that Kay had, that she got from Marion. I recognise myself in Lauren & Nattie, but I could recognise so little of myself in Kay and therefore she was always so interesting and surprising to me. It is of course difficult to know anything about how one's children will turn out, what they are likely to do with their lives, but I feel that I have an idea about Lauren & Nattie, whereas Kay could have done anything. 


I saw a child the other day, a girl with long thick red hair, just like Kay's. I so remember the times that I buried my face in Kay's hair and was amazed by the rich thickness of it, by the colour, by the length. I remember feeling a sense of wonder that a child with such hair could be my child and wondering where she came from. When I saw that child the other day, I wanted to come home and find Kay's hair - I think that when it fell out curing Chemo, Marion put it away somewhere - and I wanted to bury my face in it. I miss her so terribly, painfully, mind numbingly, awfully, inconceivably, infinitely much. I don't know where she came from and I don't know where she's gone. I only know that she's left behind a hole in my life that is simply huge, that she's left behind a father who loves her more than can be described and that the combination of these things is the definition of a broken heart.

Annoying...

Apologies for the silence. Last week, during a largely sleepless night, I sat down and wrote what I felt was a good blog entry. Unfortunately when I attempted to save it something crashed and I lost the lot. I was so disappointed that I couldn't bring myself to try to reproduce it. Also when I'd finished it was 3:30am so I decided to make another attempt to sleep, which worked - kind of.

Last week we recommenced our tennis lessons after a break of two years. I'd forgotten how much I enjoyed making a hash of basic shots on an outside court at 9pm on a cold winter's evening. But my enjoyment was severely coloured by the flood of memories that being on a tennis court again brought back. The last time I played tennis I had a complete family...  Kay loved tennis and won her club spring youngsters championship just before her bone marrow transplant... The bloody minded determination with which she struck every ball...

The past weeks the grief has been easier to bear - the change from acute to chronic, I suppose. It's just there all the time, rather like Kay's bedroom. And like Kay's bedroom, one is left wondering what to do about it or whether indeed anything can be done about it at all. I don't know.

That said in the last days the ache has resumed. I have been missing her so much again, longing to feel her lightweight frame snuggled up against me, longing to hear her laugh or her shouts of outrage when something wasn't going her way. 

I've been extremely busy at the office recently, and we're all under a hell of a lot of pressure for one reason or another. The stress has built up to the point where I'm walking around with a more or less constant pain of tension in my chest. This has been worrying me - which only makes the symptom worse, I have to say - I have not idea what a budding heart attack feels like and I really don't want to know. But last week when this pain was at a peak I started wondering if I should get check out by the GP. But then I thought sprung into my head, along the lines of, "What the hell, if I'm going to have a heart attack, bring it on. I'd rather be with Kay than continue to struggle on like this anyway". 

Of course, my "normalization circuits" cut in and I dismissed the thought. But it did indicate to me that I'm still very far from living a life of reasonable quality. 

Fires and Flares

The current period is a difficult one to describe. I suppose that in some way we're moving from a year of acute grief and loss into a period of - merely - chronic pain. At least that's how it feels. The grief that I feel has lost its sense of "first-timeness" and now feels more "settled". I use quotes here because all of these words are approximations to the truth. An example probably is more illustrative:

I was sitting in the car driving home this evening, contemplating fate, as I find myself doing too often these days. I have already said in this blog that, if I were confronted with a situation where I had to fight for my life, these days I feel that I would just rather give up and choose to go to Kay. My thoughts took a different turn this evening. On the way home I was confronted by a truck that had taken a corner too wide and ended up heading directly towards me, on my side of the road. I had to take the necessary evasive action but afterwards my nowadays fatalistic thinking started reviewing the event. I thought that actually I wouldn't want to die in fear, wouldn't want the last thing to go through my mind to be terror or even just plain panic. And then my mind made one of those horrible leaps that it tends to make these days. It asked me if Kay died in fear?

I have to say that for all intents and purposes I think she did. At least by my definition. To me Kay passed away the moment that she entered a coma and the following two weeks were not really part of her life. In the hours before she entered the coma she was terrified. She was having out of body experiences and was frightened, seeing herself standing next to her bed. She was fighting for every breath and was terrified of losing. She was scared of the procedure that would put her into the coma. She was shouting at the doctors to hurry up, she slapped me in the face when I told her to try to be calm. She certainly didn't die quietly, in peace and she didn't face it with my explicit support because I wasn't even compos-mentis enough to know what was going down. Thus, to my mind, Kay died in fear.

I was shocked to the core by this thought. It's the first time that it has occurred to me. My child died in fear. What a terrible realization. What a terrible thing. I'm horrified. I'm sitting here now with tears in my eyes and an awful feeling in my chest. Oh how I would that it could be different. I want neutrinos to travel faster than light so that I can hope to go back in time and change things. To make a different reality...

And this is how the days go, these days. I'm ploughing along through the sh*t of "normal" daily living like the rest of us, trying to deal with global news depression, European debt, Greece laziness, Philips cutbacks and all the rest of the miserable fodder of modern life, when I suddenly get struck by a mental lightening bolt, by a memory of Kay or a thought about Kay. These moments are so difficult to deal with now. 

Last "Kay year" acute grief meant that I was constantly on my guard for being mentally ambushed by terrible or painful thoughts. But in this new "Kay year" my guard has softened. The result is that when I am ambushed the damage seems to hurt so much more. But equally it feels like there's less "space" for me to be floored by it. By this I mean that I feel that now, if someone found me at my desk in tears, they probably wouldn't have quite the understanding that they would have had a year ago. At least, that's how I feel.

I was driving somewhere with Nattie on Sunday afternoon. She'd been kicking her heels all weekend because we had been painting the lounge. So I took her out to help me pick up the boat. I commented to her that she'd been bored all weekend and she replied quite simply that that had happened often since Kay was gone. A spear ran through my heart, a cold rod of steel pierced me from front to back.

And so I have absolutely no idea how to describe these days except to say that we're still living in hell, but maybe it doesn't feel quite so hot. Until the fires flare up, that is. 

Confused

I've not managed to write anything since the 19th because, frankly, I've not been able to get a grip on my feelings. On the plus side, there is a sense of relief that a year has passed and that we have now seen the complete cycle of grief, in time at least. I have a vague and guilty feeling that the period of mourning should now be over. Stiff upper lip, stomach in, chest out, time to march onwards. (Only I guess that no-one would notice if I tried to pull my stomach in these days). Also, I do indeed feel a lightening of the load, if only because the second time around has to be easier than the first time. Many peripheral problems and effects have disappeared or decreased. I don't need any medication, except the odd paracetamol to help me sleep. I'm not being drowned by waves of inconsolable grief quite so often as before. To some extent its easier to get out of bed and face the day.


And yet it seems as if all these improvements only amplify my underlying pain and grief. Like rock revealed by the retreating tide, day by day the details of our loss, my loss, are uncovered. So it is that more memories of Kay come back, not in any technicolour sense, but flashes of laughter, glimpses of moments, echos of what once was. I remember how much she liked to hold my hands, climb up my legs and chest until either she was sat on my shoulders or could do a backward roll onto the floor again. She would laugh so much and cry "Again, Daddy, Again". Like a church bell clanging, these memories remind me of what I loved so much, of what I didn't value enough, of what is now lost to me.


There is an almost visible hole in the world where Kay is not. I can feel it, it hovers just out of sight. It is delineated by silence where there should be loud noisy shouting, quiet where there should be children arguing (Kay was always arguing), emptiness where there should be a warm body. These things are becoming clearer, more identifiable as the tide of shock retreats.

Another thing is that I still can't believe that she has gone, in a sense. I know she has gone, I know she's not coming back. But although it sounds contradictory, I still can't believe that the world has been so cruel to us that it's taken Kay away. I mean, what kind of justice is that for all that we went through, for how hard Kay fought, how tough she was, how much we loved her, how much of ourselves we put into saving her? It just doesn't seem fair. In fact it still seems like the antithesis of fair, it seems malevolent.

I'm also noticing a fundamental shift in my feelings towards life in general. There's a perpetually sad fatalistic tint crept into the way that I view things. I have always looked at the world as if it were a sweet shop full of wonderful things to do, challenges to be met, places to go, people to meet. But it now feels to me as if the best days are in the past. Now I really care very little about wonderful things to do or challenges to be met. It's all meaningless. The things that you do turn turn into memories, is all. They condense down to just stories to be recanted over a glass of wine. The things that matter are the people around you. Now I just wish that I had my Kay. I would trade in all my flying and skiing and windsurfing and business successes and everything else that amounts to mere vanity to have my Kay by my side. That would be more than enough for me.  


I was sitting on the sofa last night with Nattie snuggled up against me and I thought that there are no finer moments in life than when there's a small warm child bathing in their parent's love. But Nattie is 9 and soon those moments will become less frequent as she grows up and starts to do more of her own thing. And it feels to me now that that will happen far too quickly, that I have been robbed of my Kay cuddles and that there are not enough Nattie or Lauren cuddles to make up for it. Again, it seems that most of the golden moments, most of the cuddles and snuggles were in the past and the future is relatively bare of them.


And so I sit here and continue to struggle with loss and the ramifications of loss. How does one move forward? How does one reconcile all these things and find a new balance? How does one find value in the future and not just look back with regret? I wish I knew.
 

Lessons Learned in a Year

A year later some reflection is called for, I think. The year has taught me some life lessons, things that I hope and expect will change my life and my view of life.

Friends and Family

We could not have got through the last year(s) without all the support that we have had from friends and family. Things that stick in my mind include Oom Wim and Tante Audrey living in our house, looking after Nattie for the best part of a year and, during the last year, staying here & running things when we have been away. The close circle of friends & family who were beside us when Kay died. The flood of people with food who came in the door, this time last year. We (that's a royal "we", to be fair) didn't have to cook for more than a week. And then all the hugs and the love from people who are culturally not usually so demonstrative (or maybe it's just me who is usually not so demonstrative). The 500 balloons that were launched at Kay's memorial on the hockey pitch, implying that way more than 500 people turned up for it. That Kay touched the lives of so many people. Never in my life have I felt the need to be surrounded by others so much, never have I felt so cared for as in the period after Kay's death. These things and many others have touched me deeply and, perhaps, have changed my view on life.

Kay

I can feel that Kay is with me. I can feel a connection to her in my head, just behind my right ear. It's a physical sensation that comes and goes, but right now is so strong that it feels like ear-ache. I have seen her in my mind, communicated with her in a loose and unfocussed way. When I'm not full of grief, she's there, in my head. Grief is a barrier though which she can't reach me. Therefore I try to keep my grief under control. I can't talk with her, I can't hold her, I can't interact with her much beyond sensing simple messages and emotions. But she's there and for me this is a simple but not independently verifiable fact. It's a fact that I have barely started to come to terms with. It has huge, massive implications and I suspect that much of the rest of my life will be about trying to understand what it means. But perhaps the most immediate change is that I'm no longer scared of death. I often think that if something happened to me and I had to fight for my life, I'd just give up and choose to be with Kay.

So far, so good

We have survived so far. We have been (and are still going through) the most difficult times that could possibly happen to a parent. The last two years have been torture, plain and simple. And yet we have got this far. It sounds like an empty statement "we survived", one only has to keep breathing, eating and sleeping to survive. But there's way more to survival than simply still being alive. Firstly, Marion's & my relationship has survived (so far!) stresses that I think would tear many relationships to pieces. This has only happened because we have given each other the space to deal with grief as each of us felt necessary. But also because we're both determined not to lose more than we have already lost, not to colour Lauren's or Nattie's lives unnecessarily. But survival goes further. I have continued to work and have continued to keep a fragile, difficult but extremely promising business running. I have closed two rounds of finance in the last year, which I suppose must be some kind of record in the circumstances. Marion has remained operational even at times when I thought she was about to lose the plot completely. These are not trivial things under the circumstances and although it's difficult to see survival as an achievement and not merely the prevention of something worse, we have done well. These were my words to Marion at 7:20 this morning.

Wealth cannot be measured in money

For ten years I was counted amongst the richest people on the planet. I had three fine children, a loving family. Then I lost a child and 1/3 of my wealth vanished. And only then did I come to appreciate what I had, what I had lost. We all know that wealth cannot be measured by money, but for most of us this is theoretical knowledge. The practical consequences escape us. When I look back now, the most valuable moments of my life were not skiing or flying or windsurfing. They were moments rolling round on the rug, fighting with Kay. Holding her above my head, walking her on the ceiling. Letting her climb up me, on to my shoulders, or to backflip onto her feet. Watching her play hockey. Simple, routine things that we did every day. Now I try to treasure these simple things. Watching Nattie play hockey. Cuddling Lauren. Dancing to Duran, Duran. Fleeting carefree moments, scarcer now that we're less rich and more troubled. But I shall spend the rest of my life trying to appreciate the richness that remains. Sounds simple, but in this materialistic world I think that it is very difficult to keep core values in sight. Health, family and friends: things that are priceless and that we only value when we lose them. But I'm going to try my best to (keep) see(ing) them differently.

I'm sure that there are other things that I should mention, but these are the most fundamental to have penetrated my dense head in the last year.   
       

Cuddle Sandwich

It's the 19th. No more needs to be said, I suppose. We started the day well enough with a "Nattie flavoured Cuddle Sandwich". That is Marion+Mickey, Nattie+Beertje and I in bed, cuddled up with Nattie in the middle. Very pleasant. Unlike Kay, Nattie can lie still enough to have a decent cuddle. Kay loved crawling into bed with us and did so at every opportunity, but she couldn't lie still for very long, always wanting to get up and doing something. Lauren is with my parents today. She asked weeks ago if she could be excused from school today and spend the time with Granny & Grandpa.

We're operational, as usual - no lying around being miserable for us. But I can see the tears in Marion's eyes, she looks like I felt three weeks ago in the run up to the coma. The question is what to do with the day now that we're up. Marion's busying herself around the house doing the usual things. But I'm at a bit of a loss. The most appealing thing is to do stuff with Nattie. Maybe some Meccano or trains or microscope or something. I was hoping to go cycling for a while, but I've still not shaken off the 'flu bug that I've had for the last weeks.

Flowers, cards and SMS's have been coming in for the last few days. Lovely. The support is so incredibly important, words can't say. As Linda said in an SMS to me this morning, I can't believe that it's a year. Makes it sound like it was a long time ago, but in many ways it still feels like TODAY. 

Happy Families

At the start of summer our cleaning lady quit after having been with us for some years. This was something of a disaster and I tried to talk her out of leaving. But it seems that after all this time the emotional load of being involved with our family just became too much for her. She said that she lived with our loss everyday and that she really wanted a job that didn't pull on her heart strings. I tried to argue that things are getting better, that we have made good progress in dealing our loss and that we would continue to do so. But at the end of the day she had become emotionally exhausted, quite understandably I suppose. In fact it's a measure of the goodness of her nature that she had stuck with us through the last years. Our gardener quit right in the middle of Kay's treatment the miserable ... person.

On the other hand I feel that things in our house are not necessarily as difficult as she made out. We're not exactly sat around in sack-cloth and ashes here. We're operational, we do stuff, we work, we laugh, we play, we go out, we have visitors, the house is not falling apart (quite). We don't sit around all day in tears or mope about like we have reached the end of the world. We don't talk about losing Kay particularly, nor do we reflect everything in the light of our loss. We get on with the most difficult and emotionally challenging thing that can happen to any parent and, content of this blog to one side, we don't make a huge fuss about it. At least, to my mind.

But the other evening I was round at some friends as they were putting their kids to bed. The extended family was present, grandparents, parents, kids. The atmosphere was lovely, a happy family at bedtime. The kids deflecting and dodging instructions to get upstairs, smiling faces, a relaxed atmosphere seemingly without a care in the world. Everyone playing a role and all roles completely filled. The richest family in the world, if you ask me. 

I was struck to the core by just how different their world is from ours. But equally it's difficult to quite put my finger on the difference. I think its got to do with the carefree and relaxed nature of their interactions, external markers of people who are of themselves relatively relaxed and carefree. (I use the word "relatively" because this family, as with most families, is not without its own concerns). But that's not quite it either. There's something about the atmosphere in our house that just weighs more heavily. For example the laughter in our house is quieter and less frequent and when it happens there's a component missing. Now that Lauren is back at school there's only one child around where there should be three. Bedtime involves just putting Nattie to bed and although this is a fine moment of the day, it still feels incomplete. 

How does one feel a hole in one's life? How do we give form to something that is missing? How do we quantify that which isn't anymore? What happens when a family role is no longer filled? When the day misses a key character?

I guess I came to understand why our cleaning lady left. Even when we do our best, put on our bravest faces, carry on with our lives, play, laugh, live, there's a hole that echoes loudly around our house. A missing character, an unfulfilled role. And no matter what we do, that's the way things are. 

Cast in this light it does seem that this life has become a sentence, something to be endured rather than appreciated. The happy families in this world have absolutely no idea just how fortunate they are and just how much I long for the (lost) days when we were a happy family too.