Thoughts on a Bad Pain Day and How Teamwork Accumulates
I wrote 752 words of my novel after the pain set in today.
I’m a writer. Getting the words down, advancing the project, is everything to me, my joy, my vocation, my activism, my chance to pay it back and pay it forward, everything. Today about 11:15 AM I felt a “bad pain day” starting to kick in. Sometimes the pain hits crippling levels instantly but today, like many days, I could tell I would have about 30 minutes before it got really severe, maybe 60. I have strong painkillers for bad days, but the problem is they also affect my mind, make me drowsy, loopy, punchy, hazy, a cycling mixture of altered states that make thinking unclear, like thinking through a stage-blindfold like actors use for plays, which you can see through but the world is dim and grainy from the fabric mesh. And I really, really, wanted to write today. And here’s where the teamwork starts, the kind of teamwork that keeps working even when there may not be a team to see.
First I scarfed some leftovers to take the meds I need to take with food, the weaker meds that only partly dull the pain but leave my mind clear to keep working. And while those were kicking in, and while I was still strong enough to walk, I put on the breadmaker on a timer and took some frozen fish out to thaw, so dinner would be easy in the evening when my bash’mates (housemates) got home from work and they’d be free to spend less time cooking and more with me. Note the teamwork at work already in our household, planning to have things on hand like kitchen timers and frozen fish to free us up to deal with pain days. Then I assembled my working nest on the sofa, my pile of blankets each of which has a story that makes me (a present from my Mom, a souvenir from a group trip to Iceland, my Mars blanket which matches the Jupiter one I gave a friend who’s off working on mapping Venus now…), which were all folded together from the last time I had needed them and friends had gathered them together. Next I made a pot of the energizing pain-killing ginseng-oolong tea (gift from another friend) that helps both pain and concentration, and hooked up the electric mini-blanket which yet another friend dashed out to buy me at a convention a couple years ago when the pain was really bad, which I’ve used dozens of times since, every time getting a little more done (whether it’s writing or just email or just rest) thanks to still benefiting from that past act of teamwork. Notice, my support team is seven already even though I haven’t yet interacted with anyone, because past help, and planning help creates a teamwork that helps me make the most out of the few minutes and little strength I do have to get things done before/around the pain. Teamwork that makes me an inch more powerful when I need to be.
I then tell my soon-to-leave-for-his-laboratory housemate it’s a bad pain day and he quickly, perfectly talks through the day plan, when he’ll be available to help or help distract me and when he won’t (x-ray beam experiments wait for no one!), so I know exactly what I can expect as I plan out my day, and how much strength to exhaust on writing and how much I need to save for basic things like being strong enough to make it back to bed at bedtime. I settle in to work, but also pull up a group chat with some friends and tell them it’s a pain day. Now I write, with periods of concentration alternating with patches when the pain flares and my concentration fades and I can’t keep it up. But when I can’t there are my friends discussing free speech and cat memes and our tabletop campaign and the likely human impact of cryptocapitalism, and I can read along and send sporadic happy faces even if I don’t have brain enough to do much more. And it helps, distracts, helps me fight off the tears, because the hardest part of pushing through like this, of sticking with the weak meds, are the frequent points when the pain flares, and shatters my attention, and I’m staring at the ceiling furious that this—this stupid weakness! Pain! this time vampire! this inner entropy!—is stopping me. But when that happens I can pull up chat, and read along, and fight off the rage and grief that make the kind of rage grief loop that sucks me down. And there’s more teamwork than that. When it’s bad I also think about friends, friends who aren’t here. I think about fellow author friends who are also chronic pain sufferers, our conversations, walking along the street, in a cafe, a hotel gym, vivid memories of talking with people who understand, sharing our strategies, how we all fight it together, even when we’re fighting it alone. I think about the books that they finished and smile, and know they think about the ones I’ve done and smile, together. And as the pain waves come I think about other friends, other warm times, encouragement I know they’d give if they were here, will give when they are here which won’t be long. And then I realize that the pain has faded, and the water in the corners of my eyes is easing up, and I plunge in again. For ten minutes or so, before the next pain waive rises again, but ten minutes may mean thirty more words, and—as the Romans say—that is not nothing. So after a long afternoon I have 752 words, and they’re not perfect words, I’ll have to polish them (especially pacing) tomorrow, but they’re good words, especially that one bit where the geometry was tricky, and I’ve laid one more paving stone in this long path toward my everything. Through teamwork, twenty people’s teamwork, more, even if through most of today I was alone. Because being supported sometimes, somewhere, once, carries over, makes me stronger, more powerful, more able to judge how much to push, and try. Support carries forward over time. And tomorrow or the next day it will be worse and I will need the strong drugs and to sacrifice those hours to semiconsciousness. But today, a few days here and there throughout the year, I had the little extra strength to write 752 words, good words of a good novel. And I wanted to share that, share how powerful these good, small acts of support feel from the other side, and what they help us—the many of us who really need them—do.
Written through the pain, and posted without proofreading or editing because I think a sample of the raw thoughts might be valuable in itself, 6/18/2019
NOTE: This post now has two, long substantive comments from me (as well as others from friends and a great poem) so I strongly recommend reading the comment thread, and I’ll likely eventually turn the comments into a follow-up post. (Though not until this bout of pain has stopped. 6/21/2019)
27 Responses to “Thoughts on a Bad Pain Day and How Teamwork Accumulates”
I read this just after finishing my meditation this morning, so I went back and thought around it some more. It’s beautiful, so first, thank you for sharing it. Second, the reminder that our physical container comes with inbuilt limitations, as well as the ones we may impose on it through lifetsyle or accident or chosen discipline, is useful and comforting. The rage at not being out of pain and in control is something we don’t choose, nor the pain nor the loss of control. Yet we grow through the choice of how we deal with those inveitables, the way a vine grows through any gap in a fence. Third, the reason openness and honesty with ourselves and others is key to true commonwealth is that by sharing our vulnerabilities as far as we feel able, we open the gate for others to step through and offer the best of themselves so we can be the best of ourselves.
I’m aware of my comma addiction and it is running riot here – perhaps I’ve said more than enough. (Notice how neatly I avoided that one? See, I could give them up if I wanted to…) Again, thank you for this. It has been a great comfort to me, and I am sure to many others. Like your 752 words, that is not nothing. it is love in action.
Feel better, Dr. Palmer.
I am just glad you have the army of friends and helpers and team-mates that you deserve. Thank you for sharing this, and for sharing all the wonderful writing you do.
I think pain is good and you should inflict pain on yourself like a Spartan instead of taking pills until it goes away. Your book series is painful and that’s why I like it.
This piece and your subsequent thoughtful comments really hit me. I am fortunate to be in remission (clinical, hopefully) at the moment, but it is a precarious balance of treatments and lifestyle that take up a good 50% of my brain power. The other 50% is spent trying to work through as much of my dissertation as possible for when the balance inevitably shifts again. I am grateful to you for sharing this–hearing about chronic illness experiences from people whose work I admire I inspiring and helpful.
I just finished reading the so far extant Terra Ignota series, and it’s excellent, thank you for it! And I was feeling grumpy that I’d have to wait so long for the conclusion, worth the wait as I’m sure it will be, so when I found your blog and the latest post was this one I felt horrible for having pressured you, even if just in my mind.
I’m sure I speak for many impatient fans when I say we’re behind you, excitedly awaiting anything you write, and with understanding of the pain you’re going through, we’ll try to be patient. But your stuff’s so good you don’t exactly make it easy… 😉
Here’s a warm virtual *hug* from all your anonymous fans to keep with you on the bad days.
Thank you so much for writing through the pain. I remember vividly a day when I lay on a hospital bed and so captivated by “Seven Surrenders” that the nerve pain pulsing down my legs and the ache of muscles drawn tight like a corset around my hips all became distant echoes. During a three-month period when back surgery and subsequent complications threatened my life and well-being, Terra Ignota fueled my motivation to push off death and re-orient myself towards the stars. The strength you pull on to push through the pain emanates through your writing and strengthens people like me. Thank you for being a distant but important part of my team, too 🙂
I am a Communication Professor and a voker for my research. I have a number of brilliant colleagues who, like yourself, are limited in how much they can produce due to chronic conditions and other issues. I am fortunate enough not to have any such afflictions. So I try to work harder to justify my good fortune. I hope that it offers you some small comfort when you are separated from your vocations by your condition to know that at least some of us who are among the lucky realize our good fortune and do our best to deserve it.
P.S. I think Diderot would be really pleased to serve as your intellectual patron saint.
Oh, I was just thinking about juniper since I discovered how to safely consume juniper that you find outside today and apparently one of the uses of juniper oil is to reduce inflammation. If none of my pain-depleting activities sound agreeable to you (I don’t blame you if they don’t though I personally like doing painful things) perhaps some herbal medicine would be good if it doesn’t interact with anything else you take. I do hope there are no drawbacks to reducing inflammation though since part of my mind wanted to frame painful activities as “macho activities” on some level despite those not being particularly gendered on a broad societal level or among a lot of people I know and thought about it like actors gaining or losing weight to play a role since most of Terra Ignota is from a pretty stereotypically masculine perspective. That made me wonder if one of the reasons men don’t statistically live as long besides culturally-based risks is that men have less inflammation on average. At the same time, time you’re not actually doing anything with is pretty useless even if there’s some risk so trying it seems overwhelmingly sensible to me.
Seriously, if any of your pain is due to inflammation, try using anti-inflammatory plants which will stop the inflammation causing the pain rather than just the inflammation in nerve receptors, and no, I don’t mean ones with legal restrictions. I push myself hard but I don’t get chronic pain because I do things to stop inflammation, though all the things I do are probably not reasonable for you since I’m not you and you’re not me. Also, please remember how serious of a book series you’re writing so you don’t be too hard on yourself, not in the sense of taking things easy and stopping, but just being methodical rather than only working by force.
I could never understand what it’s like to live with chronic pain, but I believe you. I believe that you–and those around you–are working as hard and as smartly as they can to address the issues that prevent you from living a more pain-free life. Thank you for sharing your experience to help me better understand the world and others around me.
As a fan of your books and this blog, thank you for continuing to persevere, for continuing to lookout for yourself and your well being, and for building up what sounds like an incredible network of people to support you.
I don’t know what you have already tried, so forgive me if this is overbearing, but there’s emerging evidence a very low carbohydrates diet helps a lot with Crohn’s.
This type of diet is known to help with a bunch of severe medical issues, including epilepsy, migraines and arthritis. There’s ongoing research exploring possible benefits for delaying the onset of Parkinson’s and Alzheimer’s, and extending survival times of various cancers. Crohn’s is on the list of conditions where there’s at least anecdotal evidence that getting rid of all (or near all) carbohydrates can help a lot:
Getting rid of carbohydrates is a huge restriction: no bread, no pasta, no sweets, no gelato etc. If you’re vegetarian or even vegan it is significantly harder, because many of the best zero carb foods are animal based. But you can still try it for a month (you can try anything for a month) and then you’ll know if it’s worth it for you. With such a huge upside, I think even a small chance of success means your Utopianism compels you to give it a try. 😉 And the chance is more than small.
All the best to you, from a more distant team member…
Thank you for sharing this, I needed to read this today. Working sustainably is the greatest struggle. And the utopian oath resonnates so much with me too. Gratitude from a fellow vocer frustrated with severe limitations.
[…] long days when I know deadlines are looming but I’m in too much pain to work (which I discuss on my blog). So I use a variety of different techniques to battle the gloom, “morbid thinking” […]
I only started reading this blog recently, after finishing Perhaps The Stars (while in a headspace of “I need to read more things written by this person — and also give Homer a proper read”). Having come back to read it now, it reminds me of “No One” (which I think is my favourite chapter in the whole series), and I can’t help but wonder if that’s the chapter you were working on when you wrote this post. Regardless, I’m grateful for this opportunity to add a little substance to my sliver of the anonymous piece of your pie.