Wish you were here...

I can't begin to tell you how much I miss you, Kay. These days every beat of my heart carries an echo that reminds me that you're not here, not going to walk in the door, not going to hug me, not going run and jump into my arms. The list of things that I miss is so long that it seems endless, full of sights and sounds and smells and feelings that are no more. I keep thinking that I'm able to deal with losing you. But then there's always something around the corner that makes me realise that I don't think I will ever be able to deal with it, accept it, come to terms with it. My arms ache with the need to hug you.

I know that I loved you as much as I could and I know that you know how much I love you still. But it doesn't seem like enough. I keep thinking of all those moments when I just accepted my family, my children at face value. When I didn't treasure them, 'grok' them, bury my face in them and absorb every atom of joy that they brought to my life. It's so easy to live with the people we love most without truly appreciating them. If I had the chance to go back and re-live the ten years of your life, I would do it slowly. I would savour every moment, treasure every second, inhale every sight, sound, smell and touch. I would bathe myself in the richness of that life. 

But now that richness has been forever diminished. And I will forever feel like a complete fool for not having realised just how lucky I was to have three such varied, beautiful and wonderful children. Now I have just two beautiful and wonderful children and try as I might, the richness of what I still have is tainted by what I have lost.

Kay, my darling. I miss you so so so much. I would move heaven and earth to hold you in my arms again, to hear you laughing, to catch you cheating at Monopoly. This life is worth so much less without you. 

Your loving Daddy, forever.

Health Report

After another sleepiness night I checked in with the GP this morning. Everything seems ok, at least from a physical point of view, BP normal, HR my usual low figure. Doc says that it's pure stress and that the best medicine is sport. I guess that these are the moments that I have to be glad that I don't smoke, don't drink (much), I'm not overweight (much) and that I occasionally get round to being active. Now I just need to recover from a horrible night. My head is buzzing with tiredness and I feel like hell. So what to do?

More on Sleep

I thought that I was winning the sleep problem but yet again I'm sat here at 2:30am, unable to sleep though desperately tired. Last Sunday night was hell, Monday I was exhausted enough to sleep through a world war, Tuesday was again horrible. Wednesday was a little better and since Thursday I've been doing OK - until now, that is.


I talked to our Homeopath on Monday and she suggested stopping some medication that I'd been taking for weeks to get rid of lingering flu symptoms. When I thought about it, this made sense - my sleep problems started shortly after starting this medication. She was fairly sure that my sleep problem was an over effect and thought that within 3 days or so, once the medication was out of my system, I would lose the sleep problem. It seems pretty much that that is what happened.


However another component of the problem is stress, I guess. I've mentioned before that I've been experiencing tension in my chest and that I find that my heart also seems to beat too hard on these occasions (not too fast, but thumps in my chest). The solution to this is exercise. For instance, last week I went on the cross trainer every other day for 30 mins, which had the effect of greatly decreasing the tension in my chest.


It's this problem that's keeping me awake tonight. I guess that this is my fault. Usually I'll do a  30 - 40km trip on my mountain bike in the weekend. I'd planned to take part in an organised ride today but after 2.5km I got a flat tyre and ended up missing the ride. I was so fed up that when I got home, without thinking, I didn't do anything to fill in the gap and so I missed out on my weekend exercise. Earlier this evening I noticed, without really noticing, that I could feel my heart beating. But it was only when I went to bed that I really noticed that it was thumping quite hard. I started to worry then, which only made the situation worse and guess what? Here I am.


I don't know what to do about it now. The problem is that the whole cycle from last week could start to repeat itself. So I need to get on the cross trainer first thing in the morning. But at this rate I'll be exhausted in the morning. 


I used to think that I could absorb stress fairly easily but since Kay became sick I seem to be pretty stress intolerant. Or rather, I think that most of my capacity to absorb stress has been taken up by the loss of Kay and I have very little room left to deal with normal things.


There have been lots of tears in our house in the last few days. Preparations for christmas are bringing our pain to the fore. I bumped into the last photos of Kay yesterday and that has really been hard to take, although I know that like many things, they have to be faced. Marion said today that she still has the feeling that Kay will come running in the door any second and that's a feeling that I share too. Again she's incredibly present by her absence. There's a Kay-shaped hole in my life that is almost tangible. 


I can't find any enthusiasm for christmas, it seems so meaningless. Thinking about gifts for people, it supposedly being a happy time of the year, etc, when my heart feels so empty. The only point of it for me is to make it nice for Lauren and Nattie and to enjoy some good company. I could easily leave the tree, the lights and all the other symbols of something I just don't feel. 


But there's one big highlight in the coming days: Lauren comes home on Wednesday. She was last home at the beginning of September, which seems like an age ago. I can't wait to see her. So I guess that for now I'll try to focus on that and see if I can eventually get some sleep.   

The last photos

Was roaming around my photo library and I bumped into the last few photos that I have of Kay before she went into intensive care.

What's happening?

I'm desperate. For the life of me, I can't sleep. It's a disaster and I have no idea what's behind it this time. Slowly across a period of weeks I've been losing the ability to sleep properly. It started out 3-4 week ago when I found myself waking up around 5am. Then slowly it became earlier until it was 4am. This was not so much of a problem because I had to particular problem falling asleep and I was getting some core rest. But about 4-5 nights ago I started having nightmares or very bad quality sleep and that has now progressed until it seems like it's impossible to get to sleep. 


Saturday night was hell. It took a long time but initially I dosed off only to find myself in a nightmare where I was having a knife fight with someone and was forced to cut their fingers off... It was a very short 'sleep' and I woke with a pounding heart which didn't calm down. I followed this up during the course of the night with a sleep inducing tablet (no effect), then later two paracetamol (which also acts as a relaxant, but to no effect) and finally ended up putting a light jazz mix on my iPhone and trying to sleep with a headset on. This worked to an extent, but not brilliantly. I've been a walking zombie all day. I've not had the energy to get on my mountain bike, which means I'm lacking exercise, which means that I'm probably only making things worse - a real downward spiral.


This evening I decided to be proactive so I took a sleep inducer and two paracetamol before I went to bed. When I found that I still couldn't sleep I put on an audio book in the hope that listening to a story would relax me. This sort of worked, but not completely. I found myself fading in and out of the story, neither sleeping nor completely following what was going on. In the end I gave up and now I'm downstairs, writing this and working on a glass of port as the last resort.


The problem is that I've been here before, earlier in the year, and it was hell. It took ages before I managed to get through it. At that time I was being plagued by serious, acute grief and therefore I could relate my sleeping problem to that directly. However this time I have absolutely no idea what's causing my insomnia. I would suggest that the grief is not as acute as 9 months ago, though we're not having the easiest period. I would also argue that work is maybe a little less worrying than it has been - we had a very good week last week and secured a big order. Prospects for the short-medium term look fair. So what the hell is going on?


This is extremely worrying, which itself makes sleeping more difficult. I just don't feel like I have the strength to battle through days or weeks of insomnia. Sitting here thinking about it has me on the verge of tears. I have important work to do, work that requires me to be able to concentrate and not sleeping destroys my ability to concentrate. I'm so desperate I'm even thinking of taking one of the full blown sleeping tablets that I have, but this will cause a whole raft of other problems, as I learnt at the start of the year.


Help!

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.     

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.

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.

Remorse

Damn, I thought I was doing ok. But this morning I suddenly realised that one year ago this was the last week of Kay's conscious life. I took her to hospital for the last time one year ago, this Thursday. She entered a coma on Saturday... The end of her life for all practical purposes.

I have been either in tears or close to tears all day. If only I had known, if only I had been prepared. I could have held her closer, longer, tighter, never let go for a second. My KayKay.

It all seems so surreal now. And I'm terrified about the rest of the week. I thought that these days would be easier to cope with than her birthday, but right now they seem far, far worse. Oh, oh, oh.

My Kay. I love you, I miss you so very very much, my darling.

Homeopathy Rules!

I felt terrible yesterday, really bad. A blanket of heavy, grey, woolly depression hung over my head. Difficult to concentrate again, memory like a sieve, didn't feel like doing anything at all. And I have to say that I was pretty worried, I had no idea how to cope with this ongoing feel.

Fortunately I had my first appointment with the homeopathist (is that a word?) and spent 30 minutes describing how I felt to her. She rummaged through her books and came up with something that she reckoned would work. Two pills to be take 30 mins before/after eating or drinking anything else. I still apply my rules of scepticism to homeopathy. That is I do what I'm told and don't pay any further attention to it, much as I would do if given medication by the GP. So I got home, swallowed the tablets and moved on with the evening.

However, around bedtime it suddenly occurred to me that I felt somewhat lighter of spirit, the grey, heavy veil seemed to less grey and less heavy. This morning I woke up feeling mentally considerably better. I would say that maybe 60% of what I felt yesterday has gone. The treatment involves continuing to drink water laced with another dose of the same medication and as I have done so I have felt better through the day.

I have no explanation for this, except causality: there's been no real improvement in my mental state for almost a week, in spite of exercise and deflection. I take the homeopathic medication and within hours feel better than I've felt in +7 days. You work it out. I have to say that not every homeopathic treatment that I've been given has worked but I would say that more than half have worked. Add to that that I'm a born skeptic, physicist by education and software engineer by career and one has to think that there really is something to homeopathy.

Sailing to Sleep

I ended up getting out of bed at lunchtime on Wednesday, mostly because I'd got meetings at the office in the afternoon. This highlights the benefit of work in this process: the obligation/reponsibility is strong enough to force me into action even when I absolutely do not feel like it. On Thursday I forced myself to cycle to work since exercise is usually the best antidote to the blues. It helped and on Saturday I did a proper 50km ride, with the same goal in mind. I've also been keeping myself busy, one way or another. But in spite of all this I'm still struggling, though not as badly as on Wednesday.

Actually I have to admit that I feel kind of unwell. It's hard to describe quite how I feel, but things in my head aren't working properly. I seem to have problems recalling simple things, like people's names. And I constantly have the feeling that I've forgotten something. I can concentrate, but only with a relatively narrow focus and concentrating is quite hard work. But mostly I'm extremely tired. I'm starting to wonder if going on holiday was such a good idea. For a few weeks life weighed less heavily and returning to the "normality" of our post-Kay lives seems to be almost unbearable.

However I have done one thing in the last week that has given me a lot of joy: editing up a video of our sailing holiday. This turned out to be a huge amount of work. I'm no expert in video editing - I prefer photography - but I'd got some good material during the holiday using my GoPro sports camera and decided to try and make something of it. I started out 10 days ago using iMovie on the Mac, but rapidly learned that I couldn't do what I wanted with it. So I bought a copy of Adobe Premiere Elements and reconstructed what I'd done with iMovie. Premiere would let me do what I wanted but it works very badly on the Mac and is rather difficult to use for a beginner. In the end I gave up a bought a copy of Apple Final Cut Pro X and this turned out to be great: fast, easy to use and able to do what I had in mind fairly easily.

I have spent a stupid number of hours editing 5 minutes of video, but just looking at the various clips and photos and experimenting putting them together in a fun sequence has kept me busy and smiling and thinking about how much fun we had sailing. I've gone to bed thinking about sailing and video editing, slept fairly well and woken up with new ideas in my head and a desire to save up my pennies and buy a yacht. For those interested (or who haven't seen it on Facebook), you can find the video here.

I guess that another thing that's affecting me is some kind of post-birthday-season reaction. I have been so worried about getting through the various birthdays, Kay's in particular, that it now seems strange to be largely on the other side. Or rather, my reaction is possibly a realization of just how hard I have had to work to maintain an equilibrium during the last weeks/months. Possibly the symptoms described above are indicative of mental exhaustion. I guess that would make sense. But if so, I have absolutely no idea how to deal with it.

We have now seen all the red letter days, bar one. We're almost through the dreaded first year. And in some way this depresses me too. I haven't managed to put my finger on why, yet. The last year has been a complete nightmare and so I would of thought that I'd feel relieved to have seen the worst of it. But really I'm so terribly, terribly tired of living in a world in which hope and joy seem to have been largely extinguished. The idea of having to live another year like the last one, albeit a repeat and hopefully diminished experience, is too dreadful to contemplate.

Anyway, I'm extremely tired and one thing I learned earlier this year is that going to bed early helps, as much as I dislike shortening the day. On the other hand, I'll play the video, remember the holiday and hopefully go to sleep with sailing on my mind.    

Fickle Me

Yesterday I was telling someone how I thought that we/I had done well on holiday, how I could imagine that I was beginning to heal in some way. In this new, nasty world it seems that no optimistic thought goes unpunished: this morning I woke up under a dark, heavy blanket of depression. Depression that after a while turned to a flood of tears, the first for a while.

I'm still in bed and I just feel like pulling the covers over my head and retreating to the darkest corner I can find. I guess that the antidote is exercise, I should get out and get on my bike and pump some of this blackness out of my body. But you know what? I feel too damned miserable to move.

Back Home

We got through Kay's birthday reasonably, I suppose, though not without the necessary tears and pain. This is largely due to the calls, SMS's and other messages that we had from family and friends. And of course keeping ourselves busy. The day at Marineland was excellent. The Orca and Dolphin shows were very enjoyable and informative, and to cap it all a baby Orca had been born at Marineland in April. This really would have been Kay's thing, she would have loved the baby. 

We spent the evening eating with some friends and ended up getting home after midnight, so we really did pack the day out with activities. I guess that we can put a tick in another box, we got through another red letter day. I suppose that there is now only one left - 19th of September. But I think I'll leave that one aside for the time being. 

I have really focused on keeping myself busy this holiday, primarily with Lauren and Nattie. It helps that they are both two years older than the last time we went on holiday and are now interested in and capable of doing more fun stuff. As a result we have spent 4 days down on the beach (a record for us!), with me teaching them windsurfing and sailing a Hobie with them. They have both taken to windsurfing and have made good progress, able to sail back & forth and make simple turns. I have thoroughly enjoyed my water-rats. Nattie is probably part fish and seems to have total confidence with any water based activity.

The only problem with all this is that I have been aware that Marion has been left out. She's not much into holiday sports and certainly not watersports, the latter being something that she shares with Kay. The fact that I have been running around with Lauren & Nat so much only goes to highlight Marion's feeling that she's lost her playmate. We each feel Kay's loss so personally and so differently. 

We got up at 3am this morning to avoid the rush of traffic and I've only had a few hours sleep since, so I'm sat here at the moment feeling very tired and fatigued. Think I'll put my feet up for the evening and contemplate the holiday.

Happy Kay's Birthday

Dont't know

I slept badly last night and have woken up this morning feeling very tired and sick in my stomach. The effort of trying to control the building flood of grief, I think. Eleven years ago this morning Marion's water broke, kicking off a whole long story about how Kay came into the world, including us signing all the papers for our new house in the delivery room of the hospital.

I'm trying my very best to control my feelings, stay on top of my pain, but it's so very difficult. We're going down the beach today to get the girls some more windsurfing lessons and maybe sail the Hobie again. This evening Alex and Roland are coming over. Hopefully by staying busy the grief can be kept at bay.

Relative Calm

As far as is possible, we seem to have got ourselves organized w.r.t. to facing Kay's birthday. We have been keeping ourselves busy, planning an activity everyday. Nattie & Lauren were very keen on the idea of learning to windsurf, so we have spent some time doing that and will continue to do so. We have also been Hobie sailing, which they also loved. So there's more of that on the agenda. 

I'm absolutely convinced that Kay wants her family to be together, to be happy, to be doing something, to laugh and to think of her. She's with us, I'm sure, just hovering in the wings of everything we do, wanting us, willing us, helping us to be together and to be happy. But even with this thought, this idea, this message in my head it is extraordinarily difficult to maintain an even keel. 

There are good things that are antidotes to everything else. Nattie has laughter in her eyes. She's always chatting and laughing about something. She's naturally a happy bunny. Lauren is more of a dower teenager. But having said that she has a cutting, cynical and twisted sense of humour: a natural Howe, in other words. Together they are a joy, the only joy that there is in fact. I think that Marion and I will be sponging joy from them during the coming days.

We witnessed from close by and extremely nasty road accident this morning. It happened literally under our noses when we were driving out from the local bakers shop. A car turning into the baker's car park was hit from behind by a motorcyclist who seemed not to have seen the car. I saw the motorcycle hit the car and the motorcyclist fly through the air, right in front of me. This moment is now engraved on my mind. 

When I got home I called my parents to chat and to vent some of my shock and we ended up in a "guess what's happened to whom?" conversation. It's amazing how we seem to be surrounded by people living tragedies of one sort or another. I know a guy who was very recently diagnosed with throat cancer, young, divorced, two kids depending on him, 15% survival chance. Another guy, very young, talented, world before him, diagnosed with ALS and a life expectancy of three years. And there's plenty more to relate. Our tragedy is not the only tragedy in this world, in fact there seem to be vastly too many of them these days.

I'm still sure that on my flight back from India in October 2009, the aircraft flew through a gap in the space/time continuum and I ended up in a parallel dimension, a much nastier world. In fact very much like the protagonist in Robert Heinlein's wonderful book, "Job: A Comedy of Justice". In this world it seems that very many people are being "Job'd", challenged to the limit of their capacity, if not down right tortured, by "fate". But in this world we also have the other end of the scale, the macro disasters and macro stupidities that seem to surround us. Famine in Sudan, Mass killings in Norway, Nuclear and Tectonic catastrophe in Japan, Economic disaster in Greece and potentially Spain, Portugal and Italy, and rank Economic Stupidity in the US.

What is the world coming to? Where has the joy of living gone? Or is the world just the same and it's merely my perception, coloured by the "wonder' of world-wide 24 hour news coverage? Ultimately I don't know. Probably it's the same world and it's just my perception of it that has been twisted. But it really doesn't seem like it, it seems like a down right nastier, joyless place to live.

Various friends have told us that they will be sending up a Wish Balloon on Kay's birthday. This is a wonderful thing. The idea that around the world the odd candle will fly into the sky in remembrance of Kay is inspiring. We would love to know.

Decision

We have decided what to do on Kay's birthday: we're going to go to Marineland for the day. Firstly this is exactly the sort of family thing that Kay would love us to do and secondly we went there some years ago an Kay loved it. Thirdly I seem to remember that Kay did a school project on Orca's just before she became ill and used some of the photos from last time we were at Marineland.

Marineland 2004

Kay at Marineland, 2004

We're probably going to follow up by going out to eat with some friends in Bandol in the evening. If I'm brave enough it will be to the sushi restaurant where we celebrated Kay's birthday two years ago.

Kay conquers Sushi, 2nd August 2009

(I have to admit that I'm digging these pictures up to try to de-sensitize myself to what's coming)

So, this is our plan. A plan that I hope will bring all five of us together for the day.

The A Team

I'm fighting off a major attack of depression, but not being very successful at it. My heart feels like a stone in my chest. I've started sleeping badly again, unable to rid myself of negative thoughts as I try to get to sleep. It feels like the world is falling apart, like it's going to continue falling apart. I'm clinging on to the fact that this should just be a passing moment, that I'll brighten up soon. After all, we had a good week last week and we were as happy as we could be these days. So it must be possible to return to that state, at least. But at the moment I don't know how, don't know where to turn or what to do to brighten things up. 

Marion represents the epitome of the problem: she is radiating misery every minute of the day and there's absolutely nothing I can do about it. Maybe it's a mistake being largely on our own these weeks. Maybe that was the key last week, that we were surrounded by people for a lot of the day. The problem is that if we decide to return home, my holiday will effectively end. Work is already hanging in the wings and my mind has at least in part switched back to thinking about it after a week of not thinking about it at all. At least if we returned home Marion would have her mum around. But for the rest, we would just have bad weather, gloom and depression in a different place. And I would almost certainly end up working.

I still can't think of what to do on Kay's birthday, everything feels so false. I'm sure that Kay wants us to be happy, wants us to be together as a family, but I don't know how to realize happiness. I feel that we should be led by what Nattie and Lauren think we should do, but I've asked them and they don't know either. It feels like being on a collision course with a supertanker, you know that this huge moment is looming but there's already nothing that you can do to avoid it except be prepared to be flattened.  

I really wish that I didn't have to deal with this moment, with these days. I wish that I could pass it off to someone else and merely be a passenger for a while. Curl up in a ball and pull the covers over my head. 

Anyone got the phone number for the A Team?

Trepidation Increases

We have arrived in France for the second part of our holiday after an excellent week's sailing in Greece. The photos below should give you an idea of how the girls spent the week and equally (and oppositely) how I spent it...

These (and other) photos go to show that it is possible for the Howe Family to have a good holiday, especially when they are surrounded by good people. My thanks go out to our holiday friends, old and new, who have kept us busy and smiling even when our hearts have failed us. Indeed, Marion had a number of tearful moments and I struggled to keep myself on an even keel for a day or so.

Yesterday we got up at 6am, left Greece, flew back to Amsterdam and then drove to our house in Provence. We decided to push on through the night and arrived at our house at 2.30am this morning. The only thing that made that possible was that, unusually, Marion split the driving with me, allowing me to get some sleep in the car. However the consequence is that I'm sat here, completely fatigued, head buzzing again with tiredness. And the joke is that for July, the weather is cold - there's a strong wind blowing and sitting outside in 24C with a cold wind is not pleasant after a week cooking in +30C.

The sailing was great because we were kept busy with one thing or another. Now that we have arrived in France there's nothing between us and Kay's birthday and both Marion and I are feeling it. Marion was in floods of tears on her Mum's shoulder yesterday when we passed home on our way from Schiphol to Le Beausset. She has again been sobbing on my shoulder this morning, asking what we should do for Kay's birthday. I'm struggling too. The benefits of EMDR are being pushed to the max, I'm sat here writing this through a screen of tears and I just don't know what to do to answer Marion's question: how should we celebrate Kay's birthday?

Marion keeps repeating that she has lost her partner, her clone. And I understand that this is the unique aspect of her loss: Kay and Marion are two of a kind, whilst Nattie and I have more in common with the way that we deal with things. This is the way that Marion and I experience our loss differently. Kay is my opposite, my counterweight. She represents things that I love, things to which I would aspire (sport, popularity, strength, empathy). For Marion, Kay is her clone, her better self, someone who understands her, who she understands, who is on the same wavelength, someone to whom she doesn't have to explain herself. 

I'm explaining this poorly, but then I'm also extrapolating from what I observe from Marion, rather than having heard it from Marion. (And so you should realize that this is my view, not necessarily Marion's). Still, I believe the general point is true. 

So, yes we have reached France and we still have two weeks holiday in front of us. But I am filled with trepidation about the coming days. I'm already being pushed to the limits of my newly won strength and it seems to me that Marion is already beyond hers. We're now on our own, no distractions except those that we invent for ourselves. No help or support beyond what we're able to do for ourselves. And the countdown has begun...
 

Schiphol 3am

Finally holiday has arrived. Psychological preparations for the coming weeks are complete. Both Marion and I have had our last EMDR sessions for the time being and now there's nothing left but to face Marion's birthday and then Kay's.

I feel somewhat strengthened but I still feel trepidation. This is going to be hard, irrespective of my new found perspective. During my last EMDR session I had the strongest sense of Kay's presence yet. However the feeling comes and goes, as I sit here in the middle of the night waiting for a 5am flight to Lefkas, I don't have a strong sense of her. Do souls sleep? Is she doing something else?

Still, for all the strengthening, I miss her terribly, especially as we prepare to go on a real holiday without her for the first time. It's weighing me down quite badly. Marion challenged me yesterday, saying that I looked miserable. It's difficult to acknowledge that actually I feel very miserable, sans Kay.

Work hasn't helped either. One spends the whole week preparing for a quiet departure and break and guess what? In the last hours half a dozen urgent things pop up, starting at 19:45 Thursday evening. I wonder when I'm going to be able to go on holiday without some kind of axe hanging over my head?

Anyway, we have to start thinking about walking over to the gate. Schiphol is incredibly busy at this time of the day, it seems like every seat is taken.

Next week we shall largely be without an Internet connection, sailing round some Greek islands. So fingers crossed I won't need the blog for support. After that we're at our own place in France and back in the modern(ish) world.

In need of Holiday

Some time has gone by since I last wrote, largely because I've been very busy with work, etc. The good news is that I'm still off the Oxyzepam. However this has not been without cost. I've been sleeping badly and dreaming a lot with the result that I'm extremely tired. In the last days the summer work lull has started to set in and I've really begun to feel how tired I am. I'm sat here now with a few minutes to spare before I have to head off for my 3rd EMDR treatment and my head is buzzing with fatigue. Holiday - next week on Saturday - cannot come soon enough.

The gains that I have made as a result of EMDR have largely remained. I still feel much better than I did a while ago. I still have the sense of Kay with me, the feeling that there's a link to her in my head, though sometimes she seems to be further away than others. But at the moment, and probably just because I'm so tired, a mere sense of Kay doesn't feel like enough. I miss her physical presence. 

We got through the 1st birthday of the season last Sunday, Nattie's 9th, without too much ado. I had a strong sense that Kay was around and was loving being with her family, seeing her family largely being happy. This sense partially filled in the gap that would otherwise have left a big hole in the day. 

The next challenge will be Marion's birthday on the 19th. Marion's having weekly EMDR at the moment, so I hope that she will be adequately strengthened to face her birthday and then Kay's on the 2nd of August.

Kay's birthday still intimidates me. It will be the subject of today's EMDR session - apparently it's possible to do EMDR on future events as well as those in the past. 

I notice that I'm still protecting myself from memories of Kay. I avoid thinking about where we were this time last year and what we were doing. In retrospect it was all downhill from the moment she came home after the BMT. The transplant had essentially failed and we just had not caught up with the facts, I suppose. Kay was so incredibly strong and fought so hard to keep her life. But the writing was on the wall already. Actually, I don't want to go there now, or at all...  it's still way too painful. 

I have to leave for the EMDR in a few minutes. I hope that it will cheer me up and/or that I can get some rest and shake off the gloom and depression that I feel right now.     

No more Oxyzepam?

I seem to have, more or less involuntarily, kicked-off from Oxyzepam, a fact that I can only see as another improvement in circumstances. I've been using Oxyzepam to fall asleep for a while now. It's pretty effective, seemingly without any of the nasty side effects that I had from the full blown sleeping tablets. A week last Thursday I noticed that I was almost through my supply so I put in a prescription renewal. However I forgot to pick up the new supply on Friday. On Friday night I thought "what the hell" and decided to cold-turkey it through the weekend.


The first night was unexpected hell. I had nasty nightmares the whole night long, the kind that it's not possible to shake off. I kept waking up and trying to distract myself, but when I fell asleep again I was right back into the nightmare, seemingly where I left off. I remember vividly in the dream fighting with someone, trying to shoot them. Eventually I put the gun in their mouth and pulled the trigger twice, but there was a cork (!) in the end of the gun and nothing happened. I managed to pull the cork out and pulled the trigger again, but this time there were no more bullets in the gun. So I ended up throwing the guy down a stairwell. From this you can conclude a) this was a horrible nightmare and b) it was bad enough that I have remembered it in some detail.


Saturday night was a little better, still nightmares but less intense - I don't remember any of them. Sunday was a bit better again, but I still woke up feeling less rested than if I'd taken the tablets. On Monday I picked the new supply up, but I decided that I'd got so far that it would be a shame to revert. So I pushed on with the cold turkey and slowly through last week I've got to the state that I'm sleeping about as well without the tablets as I was with them. That's not to say that I'm sleeping brilliantly. Without the tablets it takes me longer to get to sleep and I also seem to be waking up earlier - 6am on the nail every morning for the last week. But there's a sense of achievement of now being essentially drug-free. 


The benefits of EMDR continue to accumulate. I still feel the same sense of grief that I felt before, but now I don't seem to be suffering from it quite as much. The lightness of soul continues to develop (hopefully not into lightness of head!). I was supposed to have a 3rd session today but in the end we have been reviewing progress and planning the next session, next week. There are still issues to confront, for instance the imminent arrival of Kay's birthday, and still a lot of ground to cover. But I have the feeling that I've seen the worst of the pain of grief.


My biggest concern is now Marion. Of course, it would be incorrect of me to write about her, so there's little I can say. What I can say is that I'm worried because she's still losing weight and is skinnier than ever. But she remains a tough cookie and is fully operational - now outside mowing the grass in +30 degrees. And she's taking action to deal with her feeling, which is reassuring. I just hope that she gains some strength before holiday.

Lighter Soul

I'm struggling to know quite how to start this entry. What I want to say is that I think that the EMDR treatment is working, that I feel noticeably lighter of soul, still swimming but that I've managed to cast off the waterlogged clothes that were dragging me down. The reason that I'm struggling to know how to start is that I feel a strong need to qualify this optimism. And this puzzles me: why do I feel such a need to qualify a positive message? I guess I'll have to think about that some more. 

Back to the EMDR: the second treatment was hard, but not as hard as the first. After the first I had to lie down on the bed for a few hours, after the second I only needed a few beers and an evening sitting quietly in the garden. I got the beers but not the quiet evening as Marion's family turned up. In the days after, I started to notice a real difference in how I felt. It's difficult to describe, the best description is indeed "lighter of soul". The grief is still there but it's not as dominant as it was. This is very noticeable, so noticeable in fact that at the weekend I decided to try out just how far it goes. So I went into Kay's bedroom and nosed around a bit - something I couldn't have done a month ago. I lasted about five minutes and didn't feel pushed to my limit. An achievement.

But perhaps the biggest change that I've noticed is that I feel closer to Kay. We're on the edge of what I can say on the blog, but I now have a very strong feeling that Kay is here, with me. It's so difficult to describe, but it is a physical feeling. I think that I've mentioned it before, that I feel...  ...something in the rear right quarter of my head. It feels like someone's hand pressing very lightly on my skull above and behind my right ear. I've noticed that after the EMDR, as I have begun to feel lighter of soul, this feeling has become more...  ...focused, is the only word I can find. And it really does feel like the essence of Kay. And it really does feel like she's injecting comments into my head. Eg, this morning I forgot to lock up the house properly, after having been so instructed by Marion. I was just down the road when I remembered and I turned round and went back. After I'd corrected my mistake, I quite clearly 'heard' Kay say, "Silly Daddy", though the sense is not of hearing.    


Last Sunday was Father's Day and I have to admit that I didn't miss Kay. Why not? Because I had the feeling that she was there, right there with me/us. And when I was in her bedroom at the weekend I realized that Kay likes that fact that it's kept operational. Curtains open, curtains closed, etc. Today, when I was locking up the house for the second time I walked past her bedroom and had the sense that the reason why Kay likes her bedroom as it is, is that she likes her ties to our lives and that she's in a new situation and these ties with us and with her things give her stability and reassurance. 


So, either the EMDR is being successful and my lighter soul is more accessible to Kay, or EMDR has driven me completely nuts and I'm now certifiably barking-mad. Either way, I'm happier than I was.

Chicken

I have to own up to the fact that I chickened out of the 2nd EMDR treatment last week. I really didn't feel up it. I discussed my feeling with the psychologist who in the end agreed with me. She said that normally she'd push on, EMDR works best if it is applied in a regular, routine way. But it was clear to her that I hadn't yet recovered enough to begin a second treatment. 

I felt rather guilty. I hate admitting to this kind of weakness, but I also felt that I'd been pushed to the absolute limit in the first EMDR session and that I hadn't sufficiently recovered to do it again. I noticed in the week or so after the EMDR that I had less access to memories of Kay, like in the period after her death. This led me to thinking that my subconscious was putting up protective barriers again, which would be indicative of some kind of traumatic reaction to the EMDR. And I could well believe that, the experience was so incredibly intense.

Another consequence of this was that I couldn't think of a new seed memory with which to start the second EMDR. The idea of EMDR is that one picks a traumatic or painful memory and faces it down in various ways. Because my mind seemed to be closed to these kinds of memories of Kay, I couldn't think of anywhere to start.

Still, the session with the psychologist was a help of itself. However she said that we will continue with EMDR in the next session, which is tomorrow (!). This time I feel more ready and able to face it and I have a new seed memory in mind. So I guess that there's no way out this time. I'm dreading it.  

The 6 Billion Dollar Man

Some years ago a colleague accused me of being a perfectionist. I laughed. "Me?", I said, "I'm the least likely perfectionist on the planet", and thereby more or less automatically confirmed the allegation. And I guess that there is some truth to it. I recognize that I tend to set high standards at the office. I don't like work that is poorly presented or poorly finished. I don't like badly written text. Things should be ship-shape and Bristol fashion, as far as reasonably possible.

Elsewhere, I don't like things that don't work properly. If something is designed to do a job, then it should do that job properly. If it has features, then those features should work. I tend to get irritated with a thing even if features ancillary to its main purpose don't work properly. If something doesn't work, then throw it away and get one that does work. I hate messing around repairing things that are clearly never going to work again properly. Bodging a repair to get something partially working I find irritating, though sometimes necessary. On the other hand, if it's possible to repair that thing and restore it to fully working condition, that's fine. Satisfying, even.

This attitude extends even to my view of my own body. During my second year at University I had a knee operation. There was a suspicion that I had torn a cartilage. I must admit that I hated the idea that after the operation my knee would not be fully functional, that at the young age of 19 my skiing days would be over before they had even begun. In the event they couldn't find anything wrong with my knee. 

These were pre-endoscope days when a knee operation involved a three inch cut and 6 weeks in a plaster cast. When my leg came out of the cast it looked like it had spent 6 months in Ethiopia, my muscle tone had completely vanished. Bearing in mind that I was/am a cyclist and had/have well developed thigh muscles, this was a huge shock. I became determined to restore my muscle tone as fast as possible. I have to say that I became rather obsessed. The moment that I was allowed back on my bike I was off into the Pennines, hill climbing. With the help of the fantastic University physiotherapist I restored my muscle tone. But it came at the expense of my studies - I failed my 2nd year and had to re-sit my exams at the end of the summer holidays. Still, the next time that I saw the surgeon he remarked that he could see no difference between my left and right legs and that that was a remarkable achievement. 

I guess that I have more or less zero tolerance of imperfection when it comes to these kinds of things (but I'm not a perfectionist, right?). I like to think that all things can achieve a reasonable state of order or can be returned to that state with the right kind of effort and determination. I always reckoned that Steve Austin, The 6 Million Dollar Man, got a fair deal after his X-plane crashed. Sure, he lost two legs, an arm and an eye. But they were replaced with Bionic components that made him faster, stronger and just plain better than before. I think if I ever lost a leg or an eye or became disabled in some way I would find it extremely difficult to accept the resultant limits. I would hate the idea that I'd become... less.

And yet, I'm slowly coming to the conclusion that that is actually exactly what has happened to me. I have lost a piece of my soul. My heart is broken. I am mentally scarred, a scar that is never, ever going to go away. There are things I will never do again, things that I can never do again even if I wanted to. I am broken and although I'm still functional, I will remain broken and irreparable forever. 

This is very very difficult to accept. I look at my life and wonder what has become of it. Ten years ago everything looked perfect, was perfect. I had a great family, money, prospects, ideas, energy. The future was an exciting, undiscovered country waiting to be explored from an established, solid base. Ten years later I feel battered and crushed. Amongst other things, my family has lost a child. We have been through hell and we don't know if we have come out the other side yet. In fact, we've lost the ability to distinguish between Hell and Life. Life, it seems, is Hell. And I'm afraid that I'm going to spend the rest of my life living in it.

When I look at myself I see some of the damage and scars that I carry and I know that there are some things that cannot be fixed, some kinds of order that cannot be restored, some things lost that can never be replaced. Not even if I was the 6 Billion Dollar Man. 
   

EMDR

Some weeks ago I went through (another) moment of mental crisis, but one that was a little different from the difficult moments of grief that I've had previously. The 'crisis' came to a head while I was out cycling, something which normally relaxes me. But during this ride, as my mind flicked from one problem to another, I started getting more and more wound up. I felt like circumstances were conspiring to box me in, giving me no room for maneuver. I started to feel emotionally claustrophobic. It seemed that the only decisions that were available to me were dramatic ones, decisions that would result in cataclysmic change. 

It was a hard moment and, in the days that followed, I realized that I really have no coping strategy for these circumstances. To return to an analogy, I felt that I was/am still lost at sea, struggling just to keep my nose above water. I realized that it was time that I learned to swim, that I did something to try and do more than merely survive the grief and it's consequences. I had in mind trying something like "Mindfulness" training. 

I discussed this with the Homeopath and she recommended going to see a local psychologist who also happens to do Mindfulness training. So in the last few weeks I have been to see this lady a couple of times. The first two sessions were "orientation", telling her Kay's story, etc. I have avoided going see 'new' people since Kay's death simply because the emotional cost of telling Kay's story to a stranger is so high. It took a huge amount of emotional energy to tell her about Kay and everything else and I came out of both of these sessions completely exhausted.


At the end of the second session the psychologist told me that she had concluded that I could benefit from Eye movement desensitization and reprocessing (EMDR) treatment. We then made a series of appointments for the treatment, the first of which was last Monday lunchtime. EMDR involves facing one's most painful memories of an event and, effectively, rubbing one's nose in it until it's not painful anymore. This is obviously merely my explanation of the experience of having EMDR, the link gives a more accurate description.

Before the first EMDR treatment I really had no idea what it would involve or how difficult/easy it would be. I tend to naturally take a cynical view of this kind of thing - I mean, how can simply listening to a "ticking" sound alternating between one's left and right ear have any effect on one's emotional balance? Thus I expected the treatment to be 'superficial', shall we say?

In the event it was anything but superficial. It was a very hard, harrowing experience that left me feeling emotionally bankrupt for days afterward. I confronted the hardest and most painful memory of Kay's last days and had to repeatedly describe how I felt and what I remembered. I had to follow where these thoughts took me and I every now and again I had to return to the root memory and repeat the process. And all the while listening to the ticking sound in my ears. I cannot begin to describe how extremely hard this was, words do not suffice. The treatment lasted 90 minutes, but it felt like no more than 15 of the worst minutes that you can imagine. I came out of it completely exhausted and disoriented, so much so that I simply went home, lay on the bed and fell asleep.

The effects of the treatment lasted for days. I felt flattened, unable to emotionally respond to people and events around me. I think that it took about 3 days before my feelings started to return to normal again. (And in these three days I had to make four presentations to Venture Capitalists, which added another dimension of challenge to the whole thing).

The effect of the treatment is difficult to determine. This particular memory of Kay no longer carries the emotional overload that it previously had, which is the primary goal of the exercise and a good thing. However, EMDR is supposed to also "create more emotional space" in one's mind and result one's head being a more peaceful place. I can't say that I have noticed this effect. But then I suspect that there are so many painful memories and there's so much going on in my head that it's premature to expect a broader improvement in my state of mind.

Tomorrow I have the second treatment and, to be honest, this time I'm scared stiff by the idea. I know what is coming and just how hard it is and just how much I'm going to suffer during the treatment and how bad I'm going to feel in the days after. I almost feel like begging the psychologist to do something else. I'd rather go back and repeat the cancer treatment that I had on my back a couple of months ago, where they burned away my skin. That would be preferable to the mental pain that EMDR evoked. But I also suppose that this is a prime example of "no pain, no gain".

Bring it on.