Uncertainty principle

Ghastly Arches, by Lenny K Photography on Flickr, licensed under Creative Commons

My eyes have now not been quite right for three months. This is a side effect of my targeted therapy, but is starting to take on the proportions of a primary illness in the way it disrupts my normal life. It is hard to feel grateful to be alive when your eye hurts like someone has been punching it, or when you go outside for a walk to take your mind off things and the busy progress of spidery floaters across your field of vision almost dooms the project at its outset.

To say it’s just my eyes that aren’t quite right is a great simplification, although healthwise I am nominally fine. I am fine, but the pain in my eye socket keeps trying to tell me maybe it’s a tumor, and maybe something is very wrong again.

Then there is the exhaustion that arises from that fear. The knowledge that I should call the doctor if I’m not well, which resides alongside the knowledge that the following trajectory awaits if I do so: 1. Pay $50 co-pay just to walk in the door. 2. Endure waiting room wait. 3. Endure eye exam where I feel frustrated because I can’t actually see the letters clearly but have undergone the exam so many times that I have memorized the lines. 4. Await the dilating drops, sit in waiting room trying to read as reading slowly slips out of grasp, not to return for many hours. 5. Hear the doctor pronounce everything looks fine, he’s not sure why I have pain, Tylenol will help with that. 6. Weeks later, pay the bill for the portion of the visit insurance won’t cover. 7. Thread of messages with the nurse practitioner who doesn’t want to tell me what to do because she isn’t an eye expert so just watches and waits while I try to get treatment for the condition, either taking meds throughout or pausing them for a couple of weeks. 8. Experience more eye pain, start again at step 1.

This week the feeling of futility that arises when I go through the above steps has kept me from doing very much, even while there is much to do. Young J’s bar mitzvah is less than two months away. I need to get some business affairs in order. I should be working on my own writing in the absence of translation work (which I should be looking for). My grief over losing my father still crops up in unexpected places — like mid-contortion in my stretching class yesterday, when the awareness that we’ll never be in the same room together again suddenly stabbed my consciousness, then left.

So I got dressed for a walk today, but when I found myself still pinned to my bed an hour later, I asked J to help me. He made me get up and walked with me a short way. The weather was beautiful and it was overcast, which meant not too challenging for my eyes, but all the floaters almost made me turn back.

J left me at the turn and I planned to walk further. I decided to listen not to music, but to an unusual radio piece. It’s one of a trilogy of radio documentaries produced by the unorthodox pianist Glenn Gould for the CBC in the 1970s. I had already listened several times to the first episode, “The Idea of North,” a series of interviews about life in Northern Canada. Today, I listened to “The Quiet in the Land,” about a Mennonite community in Manitoba.

Something about the aural chaos helped soothe the visual chaos I am experiencing. There is the clink of dishes at a café, the ocean, a sermon fading in and out, a choir. You can’t let yourself get too wrapped up in any one thread because it will inevitably get lost in the soundscape.

Gould produced these pieces in a style he called “contrapuntal radio,” layering and overlapping voices and making them fade in and out, much as Bach did in his music. In the wrong frame of mind, you’d think you were going mad listening to these radio pieces.

But I was in just the right frame of mind today. I’ve spent my life feeling like an outlier. Even in my cancer treatment this is turning out to be so. I haven’t suffered the side effects that the majority of patients do, and the one that’s making me suffer the most was only found in 1% of the trial group (which must have meant one person). As a result, eye doctors may or may not have familiarity with how to treat and follow the condition. Oncologists have no idea how long patients need to stay on the medication, because the medication hasn’t been around long enough for this to be established, and if it ain’t broke, why fix it?

When I got back from my walk, the unusual aural surroundings had jarred something else loose in my brain, which was this poem by the late Stanley Kunitz.

I’d always focused on this poem as a lamentation. Today, it feels more like an exhortation. I live each day with the knowledge that many people in my situation haven’t made it this far. I still don’t understand why I have, and maybe there won’t ultimately be a point to my understanding it. I have to live in, and with, the layers.

7 thoughts on “Uncertainty principle

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