Daniel and I had just come in the house from somewhere and we had NPR on the radio keeping Magnus entertained. As we were settling in I caught a few words from the program that was on that day. Those words have been sitting and stewing in my head for several days.
Fresh Air's Terry Gross was interviewing Kate Bowler who recently released her memoir, "Everything Happens for a Reason, And Other Lies I've Loved", about living with incurable cancer. The part that I came into Terry Gross has just asked how Kate Bowler dealt with her daily pain;
Yeah, because the pain - it really does feel like it's like a noise, and it's too loud. And other people are trying to talk to you, and you can't quite hear them. It's - at least that's how my pain feels to me. So part of my hope for writing and for - I've been teaching this year and parenting, and I spent a lot of time with my friends is - I need to make sure that my world stays as large as possible to minimize the space that cancer and that pain takes up.
So part of my attempts to be a bigger person maybe than I would've been before, make my life take up more space is an attempt to deal with how terrible chronic pain is.
I could not explain my own normal pain levels any more perfect than this woman explains hers, I've used many of the same words, my pain is loud, it's hard to focus on things outside my pain. I've been working towards that for a few years, living despite the pain. It feels like a life of compromises, because it is, I have to be careful with my energy and my joints. The part of her quote that has been replaying in my head for days was "I need to make sure that my world stays as large as possible to minimize the space that cancer and pain takes up."
I want my world to be bigger and better not just to spite my pain and health struggles (and anyone who know me, knows how I love using spite for good) but so the pain itself has a smaller portion of my world. Just like a month felt like an eternity as a child and it feels like a blink now, I want to fill my life to the brim with goodness, so my pain is a blink and not a large piece of my life's pie.
I started this new "bigger" life plan before I even heard the program, we schedule a very exciting vacation next month, and we've started talking about even more adventures to discover together.
I went to listen to the whole interview this morning, because I knew I needed to dig deeper, I found Kate very inspiring, and I found another quote I'm probably going to be thinking on for awhile, there is no cure for hEDS, it's genetic, it's part of who I am, and that's okay. I've bolded the part of the second quote I'm sharing to highlight my goal every day.
But, I mean, incurable is just a different liminal space. It's like purgatory. And I have to learn to live there with as much grace and presence as possible not knowing the future.
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