Thursday, May 21, 2015


So I had my penultimate radiation treatment this morning, and everything was sailing along as usual; I was on the table, My web mask had my head latched down, the machine was all up in my grill, and the technicians left the room and I waited for the beam to start up. I've mentioned before that when the beam comes on, it's as though my eye fills with blue light, even with the eyelid closed and a cotton pad over it. Well, it hiccuped this time. The light stopped, then came back on and resumed radiating.

When the assistant came in to set me free, I said, "So what was that?" and she stared at me blankly. "That pause in the light?" "There was no break in the light," she said, and I tried to explain that there had been a pause where "the light went away" and then resumed. She didn't understand, and said there had been nothing at all different. But there was a blip in the treatment! I protested, and she condescendingly explained about the superficial red lights that were over my face to help the machine position itself correctly. "No, not that light; I know that's different." "The radiation beam doesn't have a light; you can't see one."

This went back and forth for a while, where she was dismissing my description, saying none of the equipment registered any blip or glitch, and I was put on the defensive, saying that yes, there WAS something different, and I was just letting her know in case there was something wrong in the machinery that needed to be checked, which she also dismissed. An amazing combination of low-grade passive aggression, condescension, and defensiveness.

I gave up, and was walking out when I saw the other tech, and asked her. "Oh, that was just the Whatsis resetting; it does that every time."
"No, this was different; there's a blue light that..."
"There's no light."
"I understand there's no visible light. But when the beam comes on, there a blue light that fills my eyeball. It came on and then went off. That has never happened before."

More back and forth that implied I was being nit-picking for mentioning it, and still not comprehending why I was bringing it up. I simply wanted to let them know there was a blip, and I was interested in why and wanted to let them know in case something needed checking... but they were alternating between claiming that I was wrong, that there was no harm to me (which I knew!) and implying that I was being unnecessarily cautious. It was utterly infuriating.

So here's what I wished I had said back:

"Have you ever had external beam radiation in your eye? I THOUGHT NOT. So when I tell you that a blue light fills your eye, you should believe that I know what I'm talking about! I have had 24 of these treatments, and not one of them has ever had a skip in that light until this morning. I'm not complaining, I'm just letting you know in case something needs to be checked. We good? That's all."

This is not the first time that I have encountered this strange, low-grade defensive impatience. I don't know if it is just the fields of radiation and oncology, but when I bring up concerns or questions, I can get a strange, almost subconscious level of it. Almost an air of "Don't question me," or "You're being high-maintenance." Everyone is SUPER nice and friendly in general, when everything is going along ordinarily. But when I bring up a personal concern, like the fact that my right eye is even more problematic because of the clogged tear duct, and so the skin around that eye is particularly inflamed and painful because I have to continually wipe tears away, I am somehow being whiny. It's like they are inwardly sighing with frustration at me.

WHY WON'T ANYONE GIVE ME A RECOMMENDATION OF A FACIAL SKIN CARE PRODUCT FOR THIS PROBLEM I CANNOT BE THE FIRST PERSON WITH A QUESTION LIKE THAT IN THE HISTORY OF RADIATION THERAPY?!?! is what I'm beginning to feel like shouting. (By the way, they finally did give me a product recommendation and a sample; it was ordinary Curel Daily Moisture lotion. After asking three times, and being passed off from the radiation oncologist to the oncologist to the eye doctor back to the radiation oncologist. But again, quite passive-defensively. Barely detectable.)

Sunday, May 03, 2015

The Uncertainty of Freedom

One Long Confession Posting

When I closed my computer side-business, I did so because I was tired of it and had finally realized that after nine years, I was basically doing nothing much beside working. So many projects contemplated but not begun, so many books unread, cleaning and tidying and organizing simply never even started. The most I ever managed was knitting and crocheting and embroidery in the evenings in front of the TV, and dinners with friends. All of them perfectly pleasant, but not enough to make life worthwhile in themselves.

Now I have free time, and am so unaccustomed to beginning anything ("I just don't have time...") that I cannot seem to move forward. I feel like I am waking to a different existence where the possibilities are endless, but that my mind and ambition have atrophied. I'm not depressed, but I feel that anxiety I have felt in seasons of depression long ago, of knowing that I should be doing something worthwhile, but either I'm not interested enough in it, or too lazy, to actually begin.

I should play more with my cats
I should re-organize my kitchen
I should read my books
I should scrub and dust and thoroughly clean my apartment
I should get hardwood floors installed
I should get rid of unnecessary possessions
I should volunteer and help people
I should exercise more frequently

And as usual, I am shoulding all over myself. But once I've come to that awareness, and rejected it... I cannot shake the uncertainty of what I could be doing with my life and gifts. I know what I long for, but have either dismissed it as something I have no power to achieve, or I am too lazy to make the effort.

Anais Nin once said that "life shinks or expands in proportion to one's courage." Well, I am fairly cowardly, and sometimes when I try and step back and gain perspective of my life, I can barely take a step back at all, it's such a small, pitiful space. For example... my fridge and pantry are full of nothing much. Crackers, baking ingredients, beverages, spices, yogurt, hummus, condiments, cereal. That's about it. I stopped buying practically anything that was perishable (I switched to skim milk because it will last AGES) because I was either too lazy or self-indulgent to cook. And so as a result, that area of my life has atrophied, and I never think about cooking anything unless it's something I'm baking for an event. I'm really ashamed of this. Part of it was because I only want to eat things I am in the mood for, and I don't like leftovers. So food went to waste, until I finally decided to stop trying. And when you're cooking for one, there's no-one else to feed. SO many wasted, rotting vegetables!

I have my hobbies, I have my choir and church and friendships and shared meals and my beloved Sunday naps. But I could be SO much more useful to my world. And my #1 dream is a little house in the country on a hidden back road with a garden and a beehive and a shed... none of which I can afford without moving somewhere alien or ridiculously far away. (See how quickly I claimed it was too hard to accomplish?!)

On top of this, I worry that I have become too insular, too unwilling to be heartbroken, and that I am turning away from people and situations to avoid heartbreak or boredom or weariness... all of which are pretty much a given in relationships. I'd like to go back into therapy, but Lordy, it is EXPENSIVE! And now that my extra income from the computer business is gone, it's even more difficult.

I would like to be a much better and more worthwhile person, is what I'm saying...