Christmas Thoughts

I've not added to my own blog for weeks, mostly because I guess that I'd become accustomed to the situation and also because I've been too busy and too tired to expend much energy on self reflection. The initial feelings of unreality that I'd felt have passed, replaced by some kind of mind numbing acceptance of our daily reality. I've become adept at not asking certain sorts of questions, not allowing myself to think certain kinds of thoughts, not counting on realising any plans, not allowing myself to think about the future. I've tried to find joy in immediate things, things that happen by the minute, things that are small scale, details of short term life: a dry witted remark from Lauren, an acute and funny observation from Natasha, a laugh from Kay. These things are precious of course and I probably don't appreciate them enough under normal circumstances, but they don't fully compensate for losing the future.

This is no way to live one's life. Certainly, it's against my very nature to focus on micro events. I always have plans. When I reach A, in my head I'm always already planning and heading for B and I have C in mind. I have viewed this as one of my greatest short comings, the fact that I never stop and absorb or enjoy the here-and-now. It makes life rush past rather (too) quickly. One facet of this is my inability to enjoy "moments of celebration". Usually when such a moment is reached, such as closing a business deal or launching a product, my mind is already over the horizon and the moment of celebration seems irrelevant. So I suppose, on the basis of "the things that happen to us reflect the lessons that we most need to learn", I should welcome the current situation as basic lesson in establishing a better balance between the here-and-now and the future. But frankly, in my current "stripped down to bare metal" state of mind I have no time for philosophical sops, they offer no protection against the daily harsh reality of having a child with High Risk Leukemia.

The problem with this time of the year is that it's full of reflection, of past and future. Frankly this is overloading my "think only immediately" mental dampers. I know that Marion is also suffering from a similar problem. She has been bursting into tears at the drop of a hat all week and, without even having spoken about it, I know that fear of the future and the difficulty of the present is just too much for her. She's only just able to continue functioning. And I'm close to being in the same state, though for me the effect is different. I just try to retreat further behind my mental firewall, which to everyone on the outside (of my head) seems to appear as an increasing distance/detachment from daily/social matters. For instance, in the days leading up to Christmas many of my colleagues came in to my office to wish us a Happy Christmas and to offer their hope everything would go well, etc. I found it extremely difficult to deal with these very kind and dear thoughts and good wishes. I just wanted to be left alone because right now I can't deal with good wishes for the future, because we don't have a future. Or rather, contemplating any aspect of the future, even in the form of wishing us a Happy Christmas, threatens to break my mental dampers.

And here's the dilemma: on the one hand, I/we need to feel/receive support more than ever. Every kind word, comment, email that we get is treasured and makes us feel better. On the other hand, I find it extremely difficult to deal with anything that even vaguely touches on the future, or the past for that matter. For instance, just consider the word "hope". This is a word that is completely filtered out/banned from use by my mental firewall. I have no interest in the concept of hope. If it's one thing that I have learnt, when it comes to pure fate things are what they are and will be what they will be, no matter what I might hope for, no matter what I might wish. Specifically, Kay's cancer has a dimension to it that is to a certain extent resistant to the chemotherapy that she had 7 years ago and to the chemotherapy that she's getting these days. That's why her MRD is high, that's why she needs a bone marrow transplant. The idea is to reach the lowest possible MRD with chemotherapy and then kill off the rest of her bone marrow in the hope of killing off enough of the chemo-resistant cancer cells so that when new bone marrow is transplanted the very, very few residual cancer cells left will be cleaned up by the body's natural defences. However, no-one can say for certain if this will work. So it's down to fate. There's nothing that I can do to influence the outcome. No amount of hope, no amount of wishing or praying or anything else is going to affect the outcome. So I don't plan to think about it, just merely still be here when the result becomes apparent.

Mental firewalls have their limits, at least mine does. It has worked effectively enough during the last weeks, but in the context of Christmas it has barely been holding its own. Frankly, I'm terrified. I'm terrified that next Christmas there will be a gaping hole in our family. There, I said it. Now I can't see the screen through my tears. Wait a sec, I have to pull myself together...

During the last days, and especially, nights I have found it increasingly difficult to turn away from such thoughts and their consequences. Even during the day, focussing on the minute-to-minute moments and trying to treasure them, part of me is wondering how many more of them there will be. Again, one can call on a philosophical sop and say that none of us know the answers to these questions, that I could have a heart attack on my mountain bike later today. But this is of course merely a sop, the abstract versus cold reality. Cold reality wins every time in my book. So, right now I feel like the Grinch: I hate Christmas.

And New Year will be worse. I know for certain that the closer we get to New Year the more inconsolable Marion will become. And I hate New Year at the best of times. In the last years I have found an antidote to New Year, namely walking on the beach in St Cyr (near Bandol) with the family & good friends followed by sitting outside in the winter sun drinking wine at a nice restaurant. However neither of these things are possible this year and we can't arrange to have friends round on New Year because anything can happen between now and then. So, just let us return to the other 50 weeks of the year when we're not confronted with a constant stream of relativistic moments and messages, and the impossibility of having a social life during the most social weeks of the year.

I have delayed going mountain biking to write this because I felt so extremely awful, having just waved Kay & Marion bye-bye. But writing is cathartic to an extent, surprisingly enough. So I'm off to see if I can't cheer myself up some more in the woods. Frankly, I'd better just press the "publish post" button and not reread this or I'm likely to pull it - such emotional stuff. So forgive me any spelling or English mistakes...