It’s been ten days since I was diagnosed with Crohn’s disease. In the medical sense, the condition is still “active” and has been for over four months while the screening process dragged on. Fortunately, it’s responded to my medications well enough for me to resume my usual routine as of the beginning of the new year. Maybe it’s crazy what we can get used to.
My doctor has a plan to put the disease into remission—a plan that involves a mighty gut punch to both the Crohn’s and me. Later this week, I report for the first in a series of intravenous “infusions” of a nowhere-near-real-chemo-level dose of a failed cancer drug that is now used to treat inflammatory bowel diseases. This is the “loading” phase of treatment, a combination of IV and oral drugs and weekly blood tests to make sure my liver doesn’t panic. My immune system is already mad about the pills, but she’s always mad these days. She’s sulking, taking her usual resistance to flus and colds with her as the drugs send her to time-out.
I need to settle in, simplify, and sort out what I’m keeping in my schedule and what needs to be set aside for now. I’ve read Christine Miserandino’s analogy comparing spoons to the units of energy chronically ill people get in a day. It started as a blogpost and became a meme and is now something more like a movement, arguing that there are only so many “spoons” available per day and once they’re used up, it’s bedtime. This means energy—spoons–has to be rationed, leaving sick people with weird choices.
For instance, it’s minus 25 degrees Celsius and your hour-an-half meeting is a twelve minute outdoor walk from your assigned parking spot which is already paid for. Are you going to double-pay for parking today to use the meter right outside the meeting, or burn a whole workday’s worth of energy trudging half an hour through the weather?
Or, you can have a shower, but if you stay in the water long enough to wash your hair, you’ll have to lie down as soon as you get out, and then getting up this early in the pitch dark will be pointless, so is this another quick from-the-neck-down shower and dry shampoo morning?
Or, you can go to the grocery store on the way back from work, but then you’ll have to go home and put your sore, dirty body in the bathtub instead of making dinner with the food you got, but you can’t take your meds without food, so is this another take-out Wendy’s baked potato night?
This is spoon rationing.
The spoon analogy is useful and has resonated with thousands of people. It’s a good shorthand when the time comes to apologize to someone for letting them down. Of course, it’s not perfect and needs to be used with caution and flexibility to keep it from backfiring. In explaining limitations to non-sick people, spoon theory can unduly emphasize limitations to sick people. Instead of inviting people into the struggle, it can inadvertently turn into an excuse for why they can’t come any closer.
Ironically, in its desperation to elicit grace, it can end up not leaving as much room for grace as I’d like. The grace I’m looking for from other people isn’t just understanding why I’m not quite myself right now and backing off. That’s not what I wanted when I texted my sister, “Say something cute, I’m having a sad-bath,” and she obliged by telling me about her day. It’s not what my friend gave me when she saw me coming in out of the cold and hugged me, boosting my power to warm up and my confidence in my choice to leave the house. It’s not what I feel when my group chat says “@_马珍妮 where the %#$& are you?” because someone is really hoping I’ll show up because I’m still me even if I’m old and sick. All of this is nothing, but so much.
Then there’s spiritual grace which is all about paradoxes and getting access to energy which spoon arithmetic says should not be available but sometimes just is.
Whether I’m having a day where I feel like counting spoons or not, there is plenty of rethinking and reorganizing for me to do as I work out the energy I need to keep doing not only what’s important, but what’s awesome. I have made one decision about my future already. I am taking the elevator. It’s not glamorous. According to our 1980s Canadian “ParticipAction” animated Claymation shorts, the elevator turns people into “a big fat ball.” The other day, I rode upstairs with a large unaccompanied garbage bin. No one here in the elevator but us trash. Doesn’t matter. My office is on the fourth floor and until this round of treatment is over, I am going there in the elevator. There—that’s a start.