Thursday, 21 March 2013

Flashbacks

So I'll continue to continue to pretend, my life will never end, and flowers never bend with the rainfall
Flowers Never Bend With the Rainfall - Simon and Garfunkel

Day 14 : ... Haemoglobin 9.3 ... Neutrophils 0.18 ... Platelets 19 ...

Sustained progress, and hallelujah to that. I'm desperate to get home. Desperate for life to return to normal, and to forget about myeloma. Except, of course, I can't and won't. It's surprising how much work I need to put in to rebuild my physical condition, after a year of inactivity. I'm working hard, with my physiotherapist (though she doesn't seem to pull her weight; she just stands around talking), to gain a bit of stamina, tone a few muscles, and stretch my back, which has been locked in spasmed muscles for so long.

It will take similar effort to rebuild my mind and unlock my mental spasms.

Myeloma is a dream stealer. We live in the present, but in the context of assumptions about the future. I used to take the future for granted. Marisa and I decided, before we married, that we'd take a year out to go travelling. We put in place a saving plan (not an overly arduous one because we still wanted ample social and holiday budgets in the mean time). It took us 5 years to save enough money and to find an appropriate moment in our working/studying. All that time we had a clear picture of where we were going. While we were backpacking, we had a new view ahead: this time of settling down and starting a family. Since then, we've planned the whats and whens of our current family lifestyle, and dreamed of moving our boys on to an idyllic rural/outdoorsy older childhood. Further ahead, I have joked about seeing out our old age on a beach in Thailand. Always a plan. You may not be a planner like me, but we all have those future memories: when we picture our children grown up, or look forward to a holiday, or when we imagine looking back on our current experiences as part of the narrative of our past. All these, perfectly normal, thought processes are dependent on a cloak of immortality - an underlying assumption that the future exists. Last summer, my future - and Marisa's too - evaporated.

We're all going to die, you and me. We all know that - it's no surprise for you to read it, or me to write it, except that we don't talk much about it. But we are. Indeed, it's quite possible that you will die before me. However, knowing rationally and knowing emotionally are very different things. Faced abruptly with the rude fact of my mortality, all my dreams disappeared overnight. Suddenly, there was no plan, no memories being stored up, just existence. It is hard - hopeless - to live without any dreams. It has taken me almost a year, but I am just beginning to get glimpses through the fog. This week we were talking about Lyndon and I suddenly imagined explaining to him, as a grown up, the circumstances of his infancy. Why he spent so much time with his grandparents (a privilege, I should add). Why, unlike his brothers, no-one took him on any foreign holidays as a baby (a pretty trivial example of sibling rivalry, but I can imagine being forced to explain this). Why Dad (for in this vision I was no longer a Daddy) forgot, for a year, to complete his NZ citizenship papers (evidence, were he seeking it, that Dad's focus was elsewhere than it should have been). In this vision, not only was I alive, but myeloma was something that had happened to me, not the defining interruption of my life. It was a view from a viewpoint I have not been able to access, until now. I'm not naive enough to think that there aren't plenty of less optimistic futures for me - I will never again be able to wear the cloak of immortality. But I need to be able to have positive dreams, and I know it will take mental physiotherapy to stretch my mind to do so. I'm working on it.

I'm aware this is all a bit heavy going, after the last few days' lightheartedness, but this myeloma business is complicated stuff.

5 comments:

  1. I'm still struggling with Mike's mortality three years on, especially as it has left us without any disposable income for even a trip to the seaside.

    Have you read Phil Brabbs blog? A young American with 3 small children. He might have further insights that might help.

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  2. Alex, thank you for sharing this.

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  3. "I can't and won't."!? You can and you will.
    It is quite normal and acceptable to see the dark side of all of this when you are suffering in the maw of the transplant process. It sucks. But I look at it like a woman's pregnancy. It's painful and uncomfortable. You feel nauseous. You are not in control of your body. But, like a pregnancy...it is finite. It will be over. And you will move on. And unlike a pregnant woman, you won't volunteer to do it again!. You are young enough to fight this off and you will benefit from the new therapies that are rapidly being introduced to fight this lousy disease. So don't write off any future plans just yet. Here is your quote for tomorrow.....from the non-musical Dylan: "Do not go gentle into that good night,Rage, rage against the dying of the light."

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  4. Lorna - thanks, I'll check out Phil's blog

    Ed - how I wish to forget myeloma. Seems unimaginable. But you are right I can get back to normal. Slowly, the dreams are coming back.

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