Suspended state

Last week, I listened to a conversation on Kate Bowler's podcast, Everything Happens. Bowler and her guest, Suleika Jaouad (author of Between Two Kingdoms), who were both diagnosed with different types of cancer in their early 30s and early 20s, respectively.

They discuss what it's like to live in a perpetual waiting room, waiting for the next thing (scan, biopsy, treatment, etc.) before you feel like you can make any solid plans. What I took away was the need to make plans to live my life, despite the health uncertainty: plan that trip, pursue that project, dream about something I want to do. Here are some quotations that struck me:

Suleika: "I learned right before my book tour that there was a possibility I was going to have a third [bone marrow] transplant over the summer. And when you get news like that, there’s a way in which you just become suspended in a waiting room. And I waited to make any plans for the summer, waited to commit to trips, thinking this may or may not happen. And I don’t want to be sad or disappointed if I make a plan and it can’t come to pass. And in the end, I obviously did not have a third transplant this summer. [This] left me with was the realization that I’m kind of done being suspended in a waiting room. As you know, as someone who’s dealing with illness and chronic pain, it’s so easy to live your life in increments between the next biopsy, the next scan, the next thing that is going to make you feel better....I was very happy not to spend my summer in the hospital going through a third transplant, but it also made me realize all of the things that I’ve been putting on the back burner that I’m scared to make plans for because some part of me is either waiting for the sword of Damocles to fall or waiting for some miracle. But both of those things keep me in a holding pattern....I’d rather make plans and then have to adapt my plans than to have no plans at all.

Kate: And there’s something about plans, even though I know that we’re trying to be all tender with our hopes every time we make plans, but even the imagination of the lovely things [is] so precious.

Kate then ended with this blessing:

"For those idling, unsure, staring at the wall of the room they didn’t choose. And for those revving hard, dreaming big, maybe a teeny bit of a monster right now. May you stop apologizing for the pace that you need. May you rest without calling it failure. And may you reach without feeling shame. And may today’s motion or stillness be enough."

***

Early on when I was in and out of the ICU and recovering from pulmonary embolisms (late July-fall 2022), I felt unable to plan anything. My modest goal was to stay out of the hospital for another day, another week, another month. Then as my health stabilized, I started planning in 3-month increments, from one scan to the next, and any trips had to be near a decent hospital, not a remote location. Once it became clear that Tagrisso was working and I didn't need supplemental oxygen anymore, I began planning a bit further out and being more adventurous, like taking our epic trip to Helsinki and the Baltic States last summer.

I very much related to Bowler and Jaouad's description of holding off on planning because you're in a suspended state of waiting. That used to be me. I appreciate their nudge to start dreaming and planning beyond small increments, to dare to make plans and commitments even if they might have to change.

One thing I am starting to dream about is a family trip next summer (Costa Rica? Bosnia & Herzegovina and other Adriatic countries? Eastern Europe? South America?) to celebrate my 55th birthday, 5 years post-diagnosis, and Lily's high school graduation, which I wasn't sure I would live to see and am now confident I will.

Whether we're dealing with illness or professional or personal predicaments, I think we can all heed this call not to let uncertainty prevent us from fully committing to life. (In a way, this reminds me of the John Cusack character in the 2000 movie High Fidelity, except that he avoided commitment because he always wanted to keep his options open.)

Speaking of uncertainty, I have been waiting all week to learn if/when I will start radiation next week. I just got a call that I will likely start on Monday. I will have 5 treatments. The treatments themselves are short (~15 minutes); most of the appointment time is for the set-up. So we'll be driving to/from Altoona a lot next week. I've got our podcast playlist set up. I'm thankful we signed up to be This American Life partners, which means we have access to dozens of bonus episodes!