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.
Monday, 19 September 2011
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.
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.
Friday, 16 September 2011
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.
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.
Monday, 12 September 2011
No-man's Land
As with their equivalents last year, these weeks are a no-man's land of emotion, a territory between fronts of desperation and grief. Kay's entry into a coma on the 4th of September last year heralded two weeks of pure, distilled hell for us. We hung between her life and her death, hoping and willing her to live, clinging to the faintest chance, the smallest sign of improvement. A year later it all seems to have been an exercise in futility. My opinion now is that the writing was already on the wall for weeks before Kay went into intensive care and that there never really was any chance that she would survive - the transplant had in fact already failed for all practical purposes. Kay had complained for a while that she felt that her body was giving up and from this distance and perspective I think she was right, although at the time I found and believed every reason to disagree with her.
This year, the days leading up to the 1st anniversary of the coma were absolutely some of the worst days that I have had and as such were completely unexpected. Since the 4th I have yet again entered into a no-man's land. The last week has not actually been so bad from a moment to moment perspective, except that I have been ill with a 'flu bug for most of it. But at the back of my mind I know that we have yet to face the 19th. I was caught out by the run-up to the coma and I have been surprised by the relative emotional calm of the last 8 days. So I'm now practically frozen by fear and the uncertainty of what the 19th will bring. I suppose, rationally speaking, that really it's just another day. But there's not much rational about this process and the portents are not good. Lauren has already asked me to arrange for her to be excused from school for the day so that she can spend the day privately with my parents. Nattie is excused, I have blocked the day in my agenda. We're all battening down the hatches in preparation for a storm.
Marion has been asking me how we should approach the day and I have to say that I really have no idea. I told her that we should simply try to fill the house with people, as we did the hospital and our house on the day that Kay died. I think that we're simply going to have to be borne by our friends and family for a day or so, there's no other way I can imagine getting through.
As I sit here and write this I have begun to realize that I'm rather scared, scared of what comes after the 19th. We will have completed our first year without Kay and that makes me feel even more distant from her and I don't want to be any more distant from her. Last week Marion came to me in tears: Nattie has outgrown most of the clothes that she inherited from Kay. Marion saw this as yet another sign that we're leaving Kay behind and she's right. Time moves on but Kay doesn't move with it. I once wrote that I felt as if I am on a ship sailing out of port, inexorably leaving Kay behind and powerless to do anything to stop it. The idea of leaving the first year and starting the second turn of the wheel of grief is almost too much to bare. It emphasizes the extent to which the remainder of our lives will be measured by the turn of that wheel, that our future is one in which, time after time, we will be confronted with the milestones of loss, that we have to repeat everything that we have been through in the last 12 months.
True, it should get easier. True, time is healing us, albeit very, very slowly. But the rate at which we're able to adapt, to heal, is much slower than the speed with which the wheel is turning and sometimes I just don't feel strong enough to cope, to absorb the difference.
So I suspect that we will (continue to) need everyone's support during the coming days. That, just as last year, we will be drowned and helpless under a tsunami of grief, albeit one of lesser proportions than 12 months ago.
This year, the days leading up to the 1st anniversary of the coma were absolutely some of the worst days that I have had and as such were completely unexpected. Since the 4th I have yet again entered into a no-man's land. The last week has not actually been so bad from a moment to moment perspective, except that I have been ill with a 'flu bug for most of it. But at the back of my mind I know that we have yet to face the 19th. I was caught out by the run-up to the coma and I have been surprised by the relative emotional calm of the last 8 days. So I'm now practically frozen by fear and the uncertainty of what the 19th will bring. I suppose, rationally speaking, that really it's just another day. But there's not much rational about this process and the portents are not good. Lauren has already asked me to arrange for her to be excused from school for the day so that she can spend the day privately with my parents. Nattie is excused, I have blocked the day in my agenda. We're all battening down the hatches in preparation for a storm.
Marion has been asking me how we should approach the day and I have to say that I really have no idea. I told her that we should simply try to fill the house with people, as we did the hospital and our house on the day that Kay died. I think that we're simply going to have to be borne by our friends and family for a day or so, there's no other way I can imagine getting through.
As I sit here and write this I have begun to realize that I'm rather scared, scared of what comes after the 19th. We will have completed our first year without Kay and that makes me feel even more distant from her and I don't want to be any more distant from her. Last week Marion came to me in tears: Nattie has outgrown most of the clothes that she inherited from Kay. Marion saw this as yet another sign that we're leaving Kay behind and she's right. Time moves on but Kay doesn't move with it. I once wrote that I felt as if I am on a ship sailing out of port, inexorably leaving Kay behind and powerless to do anything to stop it. The idea of leaving the first year and starting the second turn of the wheel of grief is almost too much to bare. It emphasizes the extent to which the remainder of our lives will be measured by the turn of that wheel, that our future is one in which, time after time, we will be confronted with the milestones of loss, that we have to repeat everything that we have been through in the last 12 months.
True, it should get easier. True, time is healing us, albeit very, very slowly. But the rate at which we're able to adapt, to heal, is much slower than the speed with which the wheel is turning and sometimes I just don't feel strong enough to cope, to absorb the difference.
So I suspect that we will (continue to) need everyone's support during the coming days. That, just as last year, we will be drowned and helpless under a tsunami of grief, albeit one of lesser proportions than 12 months ago.
Thursday, 1 September 2011
Broken Dream, Broken Heart
For the first time that I can remember I dreamt about Kay last night. It was an extremely vivid and realistic dream, one that at the time didn't even seem to be a dream. Kay was lying on the sofa in the lounge, snuggled under a blanket. I asked her how she was feeling and she said "a bit better", in a way that I'd forgotten about. She got up and walked to the loo in that "old lady" way that she had towards the end. But she was there and she looked like she was getting better. Then I realized in the dream that I was the only person who could see her. And I started wondering how that would work. Would the others be able to see her as she got better? Or would I be the only one?
I suddenly woke at this point, with a splitting headache and my heart bursting with hope. Then I realized that I was waking up and that maybe it was a dream. But, clinging on to the hope, I thought for an instant that perhaps it was me who was waking from a coma, that it was Kay who was waking me and that the headache was from the coma. I how I hoped that this was true. Alas for reality, it was 4am and my life still has a Kay sized hole in it. I didn't sleep much after that.
Today I feel like throwing up, only my heart has so swelled with pain that it's blocking my throat. I'm millimeters from tears. One year ago I drive her to the hospital for the last time. It was a quiet trip, neither of us speaking much. Kay wanted music on, so I put Rodrigo & Gabrielle on - we both liked that. We got to the hospital, passed the routine check. But then they measured her o2 saturation and it was 98%. So they decided to wait a while and measure it again, and it had dropped the again the second time. The end was neigh.
I just had not expected these days to be so hard, a year later. But they are turning out to be the hardest yet. I'm now dreading the 19th.
I suddenly woke at this point, with a splitting headache and my heart bursting with hope. Then I realized that I was waking up and that maybe it was a dream. But, clinging on to the hope, I thought for an instant that perhaps it was me who was waking from a coma, that it was Kay who was waking me and that the headache was from the coma. I how I hoped that this was true. Alas for reality, it was 4am and my life still has a Kay sized hole in it. I didn't sleep much after that.
Today I feel like throwing up, only my heart has so swelled with pain that it's blocking my throat. I'm millimeters from tears. One year ago I drive her to the hospital for the last time. It was a quiet trip, neither of us speaking much. Kay wanted music on, so I put Rodrigo & Gabrielle on - we both liked that. We got to the hospital, passed the routine check. But then they measured her o2 saturation and it was 98%. So they decided to wait a while and measure it again, and it had dropped the again the second time. The end was neigh.
I just had not expected these days to be so hard, a year later. But they are turning out to be the hardest yet. I'm now dreading the 19th.
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