Sunday, 10 June 2012


It’s 6:00 a.m. The steroid alarm  goes off in under five hours, so I’m forced up, sitting on the balcony, listening to bird song. Bird song to me. More likely musical warnings from the birds to stay the hell away from their tree. It’s cool and misty. The spring leaves are glorious in soprano green.

And I’m cranky.

Lately, the meds and the lack of any kind of upward curve in symptoms disappearing is getting me down. One hopes, almost expects, that it would be steady road towards improvement, but the side-effects of eight months of medical genius are not quite that cooperative. Makes sense, really. Like trying to recover from the effects of lying in the trenches of WW1 under gas attack and then following with a visit to Chernobyl.

Oh yes. I am grateful to be above ground. Seeing I have no experience with the other.

At first, I was so grateful for that, it pushed all the other little stuff out of the way. Now, nearly nine months later, I find this limbo state difficult. I never know, day to day, what to expect. Monday, I’ll get up and barely be able to wobble to my feet. My vision goes out. The world looks like a triple-exposed photograph and my feet can’t feel the floor. Never mind the way-past-mature-memory lapses and cognition impairment. Tuesday, I slide to sitting position when I awake and, strangely, all that is nearly gone. I’ve learned not to count of Wednesday, though.

I try not to whine. To you or myself. But. It is frustrating beyond belief not to be able to plan a day ahead. If I make a date for company at home, will I be reeling to answer the door, bumping into furniture? If I’m brave and make a date for outside of home, can I walk 50 feet without staggering?

Small chores, absolutely including mental ones, are often totally exhausting. I can do them but I’m apt to sleep off the fatigue for hours afterwards. Focusing my mind, through the radiation burn and meds, is like running the Olympics some days.

Yesterday, I finally gathered enough will to start applying papier mache over my plastic radiation mask. Not having the energy for creativity turns out to take energy. The mask is huge and I plan to cover it in all kinds of whimsical and meaningful images, and with beads, naturally. I’ve had a good time thinking about all the good skills and memories that are tucked up there in my beleaguered brain. I figured I’d start gathering some of them in visual form before I forget them.

I apologize for the long silence. I know some of you drop in to the blog to check on me and find it disconcerting when there’s a long gap. For my friends – Wendy has a list, should anything dire occur. You’ll be notified. For now, I’m still above ground and not at least having new side effects. But I may go quiet for spells, depending on whether it’s a Monday or a Tuesday.

Love to all.


Cynthia Newcomer Daniel said...

I'm glad you're above ground. And I'm wishing you more Tuesdays than Mondays.

Sandy said...


Howpublic said...

Here's to metaphorical Tuesdays!

Stacey said...

Illness is a grind. Then you discover something that's off the effing charts.

There aren't words to make it easier, or better. I hope today is good.

Thinking of you often.