Wednesday 19 September 2012

Two years is no better than one year

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

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

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

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

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

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

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

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

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

9 comments:

  1. Dear Rob,

    I wish I could tell you that there is a magical number, a future year when the pain goes away or becomes less than what it is, but I cannot. Our daily lives must go on in a different kind of normal.

    Our children never stray far from us, I believe that. It would indeed be wonderful to touch our loved ones and hear their voices. Instead, we have to find them in "signs" some are small, and some of them will smack you right in the face! It will be an "aha" kind of moment.


    Thinking of you and your family today.

    Your friend,
    Debbie

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  2. Dear Mr. Howe,
    I somehow came across your blog late one night about a month ago and read "Kay's Leukemia Blog" as well as your own from start to finish. I cried, and then I cried some more. It was 3am by the time I finished, and I immediately picked up my slumbering one year old son from his crib and brought him into my bed where I hugged him ever so tightly for what remained of the night.

    I looked at the calendar this afternoon and when I saw that it was the 19th, I remembered your blog and thus returned to it today. To me, this is a testament to the fact that Kay, her story, and your abundant love for her continue to touch people the world over and inspire perfect strangers like myself to appreciate life and to love our children that much more.

    I won't even attempt to impart any words of comfort as I fear that they will come off as trite, but suffice it to say that today in Rome, a random Guyanese-Canadian woman is thinking of Kay, you, and your family. You all are in my continued prayers, and I hope that time will eventually bring you some light and peace (okay, I guess it's harder than I thought to stay away from the futile attempt of comforting).

    Please continue to write - your writing is beautiful, provocative, and heartfelt.

    With kind thoughts,
    DG

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  3. Oh Rob,

    You have been on my mind these last few weeks - almost constantly.
    I know about those walls, those of us who know you recognise what they mean - I don't believe that people really think you are 'distant'. I also know that you do have happy memories and one day they will be the most prominent ones.
    I cried with you this morning when I woke - and now I'm crying with you again.
    We can't bring your beautiful daughter back, all we can do is try to help you to keep the happy memories at the front of your mind.
    Look at the pictures and hear her laughter. Remember the fun and the cuddles. Maybe remember the times when she was a little monkey too and smile to yourself.
    Hang in there Rob. Please keep talking and please know that you are still surrounded by huge amounts of love.
    Wish the hug could be real
    Linda xxx

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  4. Trying to write you some kind message of direction but having my usual tech difficulties. Last essay has just wiped itself out on my iPhone. Will keep trying.

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  5. Rob,

    Indeed, you honor Kay profoundly.

    If I can fathom the depths of your love for Kay by gauging how much you miss her, it seems no less than eternal. What a fortune for Kay to have such a father. And what a blessing for those who bathe in your love.

    I pray continually that it will all make sense to you someday. My faith is that it will.

    Your faithful friend,
    Mark.

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  6. Rob, you continue to touch so many people with your words. You brought me back to that night two years ago when I lay in bed at the beach, checking my iPad every few minutes, hoping for a miracle to take place on the other side of the world where a little girl I didn't know but who'd wormed her way into my heart was fighting for her life. I grieved with you that night and I grieve with you now. I don't have answers. I listen to Debbie's wisdom...that is one brave woman...and I hope you find those signs she speaks of and they fill you with comfort. Xoxo, diane

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    Replies
    1. Iwas unable to pass comment on the latest blog at the time for fear of getting too emotional and saying something trite. However, I agree with Linda whole heartedly. From Debra,Diane, Mark and your most recent contact comes the overwhelming message that Kay's life, through your wonderful writing shines across the world and also demonstrates that there are wonderfully sympathetic caring people in it.
      Thank you all so much. I am so proud of you,son. Love Mum

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  7. I was unable to comment on the latest blog at the time for fear of getting too emotional and saying something trite. However I agree with Linda wholeheartedly .
    From Debra, Diane, Mark and your most recent contact comes the overwhelming message that Kay's life, through your wonderful writing, shines across the world and also demonstrates that there are wonderful,sympathetic, caring people in it.. Thank you all so much. I am so proud of you, my son. Love Mum.

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  8. Still here, listening, and crying with you when you write So Beautiful. Hope that you and Marion and your girls hold eachother very tight and don't let Go in THE love for Kay.
    Bye Rob,
    Ciel

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