There Are No Words: Diagnosis

2015.08.04 – Toronto East General Hospital recovery ward

Another placeholder, not because I’m out of energy right at the moment, but because today’s notes are more important that last year’s diagnosis, which wasn’t all that traumatic for me. To that end, here are some pictures from that day, along with the surgical pathology report.

2016.08.04 – The Beach, Toronto

Today’s diagnosis is a bit different, and sharing this leaves me feeling ashamed and embarrassed and exposed and vulnerable. This is a set of emotions that are more than a little rare for me, so I am finding it very hard to express them in a visceral way. If I sound disconnected or aloof or like I’ve got it all under control, I will refer you to Star Trek (reboot) and elder Spock saying, “I can assure you Jim, I am emotionally compromised.”

This is my fourth confession. First, I confessed to my doctor. Right after, I confessed to my wife via chat. Finally to little girl when I walked in the door.

She was playing with Play-Doh at the kitchen table. As is her habit, she picked up her conversation with me as if I’d never left, saying, “And these cookies are for people who are sick and for people who are not and for anyone can eat these cookies.” Most of this came out in a rush before I was even through the door. (There was no punctuation in the way she said it, so there’s no punctuation in the way I wrote it down.)

“I haven’t been feeling well, because one of my hormones is out of whack,” I said.

She broke into song: “A delivery service inside you! The hormones are the messenger!” It was a fragment of a song called “The Bloodmobile” by They Might Be Giants. (Put “Here Comes Science” on repeat for a few years of your child’s life. Seriously.)

I broke out into a huge grin. “Exactly,” I said. “There’s an organ called the thyroid in your neck that makes a hormone. Mine doesn’t work anymore, so I need to take a drug instead.”

“Because you had cancer?” She doesn’t look particularly troubled by this, but then she is still making her cookies.

“Because of the way we had to treat my cancer,” I said. “My hormones got out of whack because I made a mistake. I didn’t take my medicine. Now we’re going to fix it.”

“It’s OK to make mistakes, Daddy, as long as you learn from them.”

“I know, but I still feel really bad about making this mistake.”

“Why?” She paused her careful trimming of the cookies to look up at me.

I leaned back against the stove for a moment. “I feel bad because I don’t like making mistakes. I like getting things right. Mistakes don’t feel good.”

“Everybody makes mistakes, Daddy.”

“Yes we do, sweetie.” I stepped over and gave her a kiss on the top of her head. “And I’ll be learning from this one.”

“That’s the important thing,” she said, going back to her cookie trimming.

My doctor called me this morning and told me to come in to her office today. My blood tests from yesterday were in and were very out of whack. I knew they would be, because – I am ashamed to say – I have not been taking my thyroid medicine. Shame is not a feeling that I experience much. Grade two and second year university (when I had a breakdown, failed all my courses, and was disbarred) would be other notable times I’ve felt this way.

I suspect that this feeling is rare because making mistakes and learning from them is part of my self-identity. I try to approach most situations assuming I’m going to get it wrong long before I get it right. As luck has it I tend to learn quickly and have a brain that enjoys (and is good at) problem solving. I can often set myself up to fail safe, so when it comes to the main event I can execute well.

Taken altogether this means that it’s rare that my inner voice can justifiably accuse myself of something shameful. “You should have known better. You DO know better. What were you thinking?” In this case, I should have known better, I do know better, and it is very difficult to describe how I slipped into this state.

The last time my prescription ran out was a few months ago. I should have gone to get my blood tests done, should have gone to get my prescription refilled, shoulda shoulda shoulda.

What I did was something I find profoundly distasteful: I traded these active controls over my health for a sense of control. Without really realizing that I had done it, I chose to have a sense that I’m normal and not a broken toy, instead of keeping the toy in working order. I just slipped into it, disconnecting the rational knowledge of my situation from my emotional behaviour. I just didn’t think about it. I know what these cognitive biases are called, how they work, and ways to guard against them. I teach people about this stuff, and actively use it in my consulting work. Also, I’m human, and can’t avoid making this kind of mistake at least sometimes.

Over the last few weeks I’ve started to feel the symptoms of my non-functional thyroid. My hypothyroid state is serious but by no means critical. The weakness, depression, heat sensitivity, low energy, muscle cramping – all of it ties back to my metabolism being screwed because I stopped taking my little pill in the morning.

Confession is good for the spirits: I do feel much less burdened now than I did even a day ago. I had to use mental judo on myself to get here: I knew that getting my blood tested would precipitate a confession that I couldn’t bring myself to make on my own.

Now it’s back to the grind of finding normal. It will take months to get my hormones back in line, and could be weeks before I start to feel noticeably better.

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