Epilogue five

Have you come here for forgiveness? Have you come to raise the dead? Have you come here to play Jesus to the lepers in your head?
One – U2

Body in a box

Gyles and I were recently discussing grisly deaths (as you do! Children make sure that conversation topics are varied and surprising. It’s one of the – very many – ways they enliven the world). We’d got as far as being buried alive. I said that surely being trapped for hours/days knowing you were going to die would be the worst way to go. I’d rather a lot pain in the short term, than hours/days waiting.

And now that I’ve raised the subject, I’m guessing most of you would agree? Because, who cares how long you live, if you’re miserable. What’s quantity, without quality?

Seems straightforward.

That myeloma is a threat to quantity, is old news. And when the disease is bad, or the treatment is rough, it impacts quality too. What to do?

I’ve learned it is important not to act like a body in a box. One mustn’t just lie there, waiting to die.

When the disease is in “remission” (or whatever name we wish to grace those periods with when the myeloma is not proliferating), then the quality – in the short term – is fine. Then I want to live rather than exist. To embrace today. To make it count.

And when it is not remitting, when it is out of control, or when the rigours of hospitals and drug regimes are beating down. Then, the quality is gone. But that’s a short term experience too (every time until the last time). Then, I want to submit gracefully. To let the tide wash past.

I’m reminded of the prayer by Reinhold Niebuhr
God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”

I learned through bitter experience not to fight the worst of fatigue or infection, for it simply builds up until it is impossible to resist. Far better to recognise it earlier. Increasingly, I treat lows of mood and energy in much the same way – rolling with it, not resisting it. A better day will come. (In the mean time, there’s always Netflix.)

I guess there’s a danger that this mutates into permission to give up. But given the ridiculous quantity of imposter syndrome I still feel about my symptoms, and how suspicious I often am of my own motives, I think there’s little danger of that.