Reframing is a trick and other radical beliefs from bedrest

Breast Cancer Journey captain's log five million:

I don't love the term "cancer journey," mostly because it feels very instagrammy and flippant. Therapists must have coined the term in hopes of reframing things for the victims. It's a journey. It's not something happening to you. It's part of your life. Instead of victims, we transform into travelers, having stranger adventures than a healthy/normal human. 

I don't like the idea of re-framing. Therapy is helpful, but it feels like it's just tricking your brain into being okay with things. I don't want to be okay with things. I want to revolt, take to the streets, cut out cancer with a guillotine. I suppose that's not healthy? And it's healthier to trick your brain into thinking you're on some sort of adventure? I really don't find that useful, but I'll keep using the hashtag #cancerjourney because I don't know what else to call it.

Sometimes I think I'm too literal, a problem that comes with the spectrum I live on.

Anyway: how am I?

I'm okay. I'm one of a handful of women on the planet who currently has one completely sewn-flat "breast" and one fake breast. I hate it. My sensory-overload is on high alert right now and everything about my body feels foreign. It is messing with my brain and I don't like it. 

I'm really tired of being "an interesting case." My mom was also an "interesting case." So was my dad. It's not where you want to be when you are talking cancer.

Turning to gratitude ... The meal deliveries have been amazing. Beyond amazing. I thank all of you who have sent dollars to help us buy delivery or who have sent meals. The mental load of "what's for breakfast/lunch/dinner/snack" is more than any of us can handle right now. Your kindness has kept me in bed, where I am supposed to be.

Bedrest doesn't suit me. I don't understand how I can be trying to get my strength back when I am forced to sit all day long. 

I'm fed up with the healthcare system in America, where doctors cannot spend more than 90 seconds with you. I'm convinced that's why I had such dramatic surgery last week. If the doctors (who have seen me at least twice a week since my original mastectomy) had spend more time with me, they would have noticed the raging infection before it had spread so viciously. 

But then, of course, they wouldn't get to charge $100k+ for emergency surgery. And another enormous bill for the 2+ further surgeries I will need...

Anger at the system doesn't help fix my problems, but talking about it is important. I don't want to reframe this. I want to point out the problem and hope that we can make change. I don't want other people to deal with the same bullshit I've had to deal with.

Reframing. It's such a trick. It hides reality, which means we can't make actual change.

Reframing supports the status quo. I don't like the status quo in America.

Our healthcare system is designed to kill us, unless we're incredibly wealthy or lucky, and that is not right. That is not human. That is not kind, nor caring for thy neighbor, nor civil. 

We must do better.

Gratitude. Reframing. Tricking your brain. I remain grateful. I don't see that gratitude is anathema to realism. We can be angry and grateful at the same time. But if all we are is gracious, we will never be motivated to change the systems that are trying to kill us. 

I'm desperate to create. Creation from bed-rest is hard.  All the surgeries have rendered my arms/hands not nearly as dextrous as they were a few months ago. I worry I'll never be able to play piano like I know I can. I cannot write anything with either hand for more than thirty seconds before it's illegible. It's upsetting. 

I've finally weaned off the neurological medications doctors put me on when I kept telling them something was wrong and they just assumed I was anxiety-ridden and depressed. I was not. My head is clearer now, and I feel better for it. I'm far too aware that my time is limited, and I have so much more to create. 

Here's a quick Christmas tune I did last week when I had five minutes of energy.


I'm feeling more and more bursts of energy, so look out world. My novel is coming. My memoir is coming. My Christmas album is coming. My ... well, how's this for reframing: Forced bedrest means time to write all these things. Write, write, write. Once my hands are able to work properly again, I'll put blogs like these back in my journal where they belong. And I'll go back to posting funny anecdotes and budget travel itineraries.

I'm also staying away from Facebook, so consider joining me on Patreon. I love that community, and it's where I am free to post my creations, drafts, wild hairs and more.
Consider joining at the lowest tiers (you can always choose your own tiers) and supporting five creators. You'll feel great about yourself. It doesn't have to be me; there are loads of amazing people on Patreon.

Thank you all for being amazing.

2 comments

  1. alixNovember 24, 2020 at 9:23 PM

    Oh, friend. Yes, to all of this. I remember reading something a few years ago where someone raised these same issues with the term "cancer journey." He rejected that and said something along the lines of he is on a life journey and at this moment cancer is an unwanted companion on that journey.

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