Tag Archives: Crohn’s disease

Things to Hold at the End of the World – Health, Faith, Family, Work, Art

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Me, “chewing through” my medication

I got good news this week. 

My doctor is doing appointments over the phone for now, and he called early, catching me in the bathtub to let me know the scope and the scan I had this summer, almost two years after a life-changing flare of Crohn’s disease, showed I have scar tissue but no actively diseased tissue in my colon. 

He was so proud of us, genuinely happy. 

Not everyone experiences Crohn’s the same way, and the damage I suffered was particularly gruesome and dangerous. Based on that, some setbacks this winter, and a natural drug tolerance that had me, in his words, “chewing through” my fancy IV medication, he didn’t expect the results he found. He expected to be increasing my medications, and the possibility of surgery remained a live one. He was not only proud but openly surprised none of this will be necessary.

I was the opposite of proud. I’m a spiritual person and I embraced the good news as an exchange of grace I don’t deserve or understand, something connected to my father’s faith as he did his dying this spring. It’s a religious person thing, meaning made in the best of faith…

Anyways…

I need to keep taking IV medication to stay this way. The bowel isn’t the only part of the body affected by Crohn’s, and many other symptoms — typical auto-immune garbage — are still with me. The side effects of my medication remain too, a lesser evil but evil all the same, one which leaves me immune compromised during a pandemic. Yes, I am part of the “it’s only the…” population so many are willing to make into human sacrifices. Into the volcano with us. Cheers.

Still, nothing ruins my good news. This year has been astoundingly bad all around. As the year I lost my father to a long illness, it certainly includes some of the worst days of my life. But there have also been moments in the pandemic that bring goodness home to me, not always unlikely remissions, but things worth remembering.

Like…

  • My kids – It became obvious that my programmer son could work anywhere, so he moved 3500km from head office, back to the city where the rest of the family lives. Bonus is that, according to his youngest brother, “he is nice now.”
Home Office
  • My sibs – The sibling group chat (seven of us) has been a lifeline. As we work out Dad’s death, there isn’t much that needs working out between all of us. At the end, my sisters and I (five of us) moved into my parents’ tiny house for two weeks under the most stressful of circumstances, and we couldn’t have loved each other better or more. It was a great testament to my dad’s gift for making families. Elton John’s “Your Song” and Keane’s “Somewhere Only We Know” — basically any bittersweet Brit-alt-pop covered by a woman with a sweet voice — is about them.
  • Love – My husband will still kiss me goodbye for the day, even if I’m in a zoom classroom with twenty teenagers.
  • The earth – My modest yard is dominated by a pair of huge white spruce trees. For the six years we’ve lived here, we dismissed their corner as a black hole of sharp needles and mad insects. But this year, we took the time to see that many of their lower branches had died off. Once we pruned them away, it left the perfect spot to hang a hammock. The bugs hated it and left in a huff. We spent hours out there, in a fake boreal forest, like a place from my childhood. In this spot, I read reams of heavy philosophy that might have been unbearable otherwise. And yeah, it’s close enough to the house to get wifi.
  • My work – I’m a writer and a PhD candidate and this late in my degree, I would continue to do my work whether I was paid for it or not. But I do get paid for it. Months into the pandemic, the government of Canada continued to award funding for research in the humanities, and I benefit directly from that. Clearly, culture and art have been comforting and sustaining people through this crisis. And even as people I know and like fall for anti-intellectual, anti-humanities conspiracy theories, unaware of the irony of the parallels to Maoism in what they repeat, ill- and misinformed about what we do and how and why, I’m still in a place where I can keep working and creating.

Grief is work — grief for what we lose in global disasters, what we lose from our families, from our bodies. 

Grief is collaborative work done with my family, my medical team, in publishing, in research, in social media posts of my feet in my hammock. 

Grief is creative work. Writing my dissertation and my creative projects under newly pruned spruce trees dripping with sap is the same work as making sense of Dad’s death, which is the same work as healing my colon, which is the same work as taking care of my husband and siblings and long lost children, which is the same work as all of this.

Gear and Clothing in Las Vegas (and Cedar City)

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JQLV2019Last week, I went to a conference in a small city best reached by an international flight to Las Vegas. It wasn’t a big conference, wasn’t particularly relevant to my current research, and in the end, I made my presentation to six other people, mostly conference organizers attending out of the kindness of their hearts. But that’s what conferences are really about anyway, right—the friends we make along the way?  An important point of the trip was its function as a test-flight for my upcoming big conference trip across the Atlantic, to London. Air travel with a chronic illness—can I do it?

The test-flight was a quick one, booked on ultra discount airline Swoop. What’s it like to fly Swoop from anywhere to Las Vegas at the beginning of the May long weekend? Remember that 1990s dance song “The Venga Bus,” the one about the “inter-city disco”? Disappointed there isn’t more beer spilled on your flight? Fly Swoop.

It was my first time in Las Vegas but it had a familiar energy. Strangely, unexpectedly, it felt a bit like China—fat, English China, where what made me stand out in a crowd was nothing but the fact that I was there, in Vegas, alone.

In the dark, I drove north, into mountains which probably have a name, up to Cedar City. In a dormitory with no China-energy at all—mattress on the bed, potable water–I went to bed exhausted and keenly aware of something I hadn’t thought about for at least two weeks: the illness deep in my guts. It was there when I woke up, mounting through the day. Ignorable enough to leave me a clear head for making a comment on the presentation of the one woman who spoke during the morning. In the afternoon, I accidentally went to a talk on water management in Utah but got through it, even the question and answer section where someone asked what changed between the state’s early communal religious settler days when it was a model of responsible water use to now when it’s a complete mess. I did not jump up to yell, “Capitalism! Are you kidding me? It’s capitalism!”

Dinner was fabulous. USA, USA. The keynote address began at a little after six, in a room decorated like Hogwart’s dining hall. By 7:55, the Q&A was still in full swing. I had good will for the man speaking but realized I would be walking out at 8pm whether he was finished or not. And anyways, like most of the speakers I’d heard that day, it was more twentieth century Western theory for 2019 global issues and it was wearing away at me. The trip, the T.S. Eliot quotes, the May weather that would have been bad even in Canada—it was over for me, the conference’s queen of chronic malaise.

I needed drugs and a bathtub. Back at the dorm, damp and freezing, I looked at the raised lip of the shower stall and didn’t wonder for very long about whether I could stop up its drain and rig a tub out of it. No, drugs alone would have to do. And they did. In my own homage to the twentieth century, I laid in bed watching clips of Wayne’s World, lingering on the parts where white people speak Chinese. That’s the joke. That’s the whole joke.

In the morning, the symptoms that had me fantasizing about getting back to Canada and going straight to the emergency room had vanished. I went to just one more talk before rolling out. The conference had been fruitful. I met smart and good people, two of whom invited me to submit the paper I presented to their publications. I left right before another all-girl panel like mine began. Before heading down the mountain, I went up, to the tip top where my church has built a temple. It was a beauty, new but built after the style of the nineteenth century. The parking lot was full, the front plaza lined with people in Sunday clothes—wedding guests. Congratulations, y’all. Share your water now.

Utah, Arizona, Nevada and Vegas on a Saturday afternoon. My big backpack and the sweater I put on in Cedar City were making me look like a lone gunman, parking her rental car one block north of Mandalay Bay. Not the look I wanted, so I went into Ross Dress for Less and bought a summer dress—a red one with an elastic neckline. I wore it over my jeans.

Down at the Bellagio fountain, music came up with the water—bongos and an acoustic bass. How had I not known the soundtrack was “Viva Las Vegas”, the Elvis Presley version, the voice of the ghost of this city, heard half hourly, turning day into nighttime, turning night into daytime?

It was almost time to report back to Venga Airways. I needed to sit and gather strength somewhere out of the sun. I sat down in front of a slot machine, fed it a dollar bill, and pulled the lever, the rent for the seat. When I told a colleague of mine about it, back home, he was shocked. “Capitalism got our star student!” I heard his voice in my head as I read the text, his Shanghaiese accent.

Travel is part of this long, difficult, costly education of mine. That is actually what conferences are all about. The friends are nice but the learning also comes in being alone, unprepared, surprised, suffering a little as we take the schemes we dream up in our offices out into the world, into other people’s worlds, to see if there’s any truth to them. In Vegas and Cedar City, the work I’d done on an obscure problem of East-West ontological and epistemological theory hit the road and found some traction.

Still, when I go to London, it will be as we.

Elevators Full of Spoons

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elevatorIt’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.