Thoughts on a Bad Pain Day and How Teamwork Accumulates

Here’s a picture of Diderot. I think about Diderot too, on bad pain days. He had crippling digestive problems just like me and worked through pain too. Teamwork lasts a long time when it’s good.

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)

Here are some of my students. I think about my students too on bad pain days, because telling this class I had to miss a class for surgery was the first time I had to be really public about my disability, and they were so supportive, and so warm, and so overflowing with fruitful questions about disability and support and inclusion and what they could do and how they could support friends and classmates with disabilities, and be good teams and allies, and remembering that warm experience makes it much easier to talk about, made it really possible to talk about for the first time. Students are great. And they pass it forward. Thank you.
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27 Responses to “Thoughts on a Bad Pain Day and How Teamwork Accumulates”

  1. Helen McCarthy said:

    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.

    • exurbe said:

      Thank you, Helen. It’s always a joy hearing these kinds of thoughts from you, full of the same warmth and energy and love of life and humanity that comes through in your poetry. Thank you for sharing so much with the world! It’s a privilege being your friend.

  2. Kate Lowe said:

    Feel better, Dr. Palmer.

  3. Terry Hickman said:

    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.

    • exurbe said:

      Thank you. The encouragement helps a lot when I’m trying to push. (It’s pain day #3-in-a-row now, seeing if I can get a little writing in…)

  4. Michaela McKuen said:

    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.

    • exurbe said:

      One thing chronic pain is, more than anything, is wearying. It exhausts both body and mind, drags you down. It’s true in creating fiction I and other authors sometimes create experiences of intentional emotional pain, grief, intensity, but those are by nature brief, and the exhaustion effect is part of the experiential arc, I think, part of how finishing a work like that (or an intense chapter) leaves you with a kind of exhausted catharsis which relaxes the body that you then build up from there. But extended pain, the kind of pain chronic pain that I and many experience, doesn’t cause the adrenaline rush of acute pain, or the catharsis pain of moving through the curated emotional pain experience of a powerful book, it just drags you down hour by hour, making it hard to type, hard to think, hard to stand, hard to eat, hard to crawl one’s way to the bathroom. Today, for example, I paid the price for pushing through the pain yesterday and was too exhausted to work at all, or to get myself food until friends got home to help me. That kind of pain doesn’t push forward, it just drags down.

      A study I was just reading says their research shows the brain’s pain response actually changes when pain is repeated. The brain, we think, is designed to handle pain by having a strong response, addressing it (that’s where the adrenaline rush can come in), then fixing it. But that only works if the pain stops. When the same pain recurs in the same place over time, then it looks like the brain’s normal response can’t handle it and it causes damage, the same kind that emotional trauma causes, and makes the brain have damaged reactions to the pain, and especially it makes the reactions more extreme than the level of pain would normally cause. One thing that baffled me for a long time about my own pain was how completely it would exhaust me, make me unable to think, make my head feel fuzzy, my memory stop tracking on things, even though if you asked me “how severe is the pain?” I would rate it lower than, for example, if I’d slammed my finger in the door the day before. And I’ve totally done work and had my brain working fine the day after slamming my finger in the door, so I felt like a wuss that I couldn’t do the same with this *less severe* pain. But what we’ve come to understand is that when it’s the same pain in the same place over and over, drawn out, it makes changes in the brain that have a totally different set of consequences. Exhaustion is one documented commont result, trouble concentrating, sleepiness, but it also often causes depression, “morbid thinking” when you can’t stop thinking about death or human mortality (I’ve certainly experienced that, lying on the couch being FURIOUS about human finitude and desperately unable to get my mind off it…). It was very comforting reading the study, because it’s very easy to become angry at myself while lying here, feeling that I’m weak, that I should be able to push, that this shouldn’t be enough to take me down, feeling lazy, feeling like I’m failing, feeling so angry at myself that I can’t even sit half-way propped on pillows without being exhausted by the effort of holding my head up. So it’s very comforting knowing from this study there really is something going wrong in my brain when the pain does this, that the symptoms are real, and that (as today proves) pushing through is the wrong answer. Resting and doing what I can to get on top of the pain, that’s what leads to the best outcome. Because writing a novel isn’t a sprint, it’s a marathon. Writing many novels over a long career isn’t one marathon, it’s keeping in shape for many marathons. And whatever you do, whether it’s writing, or research, or construction, or playing RPGs, or being a good human being who supports friends and family, that’s also no sprint. And just like a good distance runner needs to know about muscles and bones and metabolism and what different kinds of nutrients and hydration strategies do to the body to get the most out of it, it’s important too to learn about pain, and different kinds, and what it does to us, so we can factor that too into how we try to perform at our best.

      • Michaela McKuen said:

        I feel like I don’t believe the results of that study. My first suggestions were going to be “eat some hot chili peppers” and “take cold showers.” Both of those are pain in the same place over and over again and while they don’t have the duration of chronic pain, they have a much longer duration than stubbing your toe. Plus, heat, cold, and capsaicin are all used as pain treatments for injuries already because activating the nerves depletes the pain signals (opponent process.) Also, it seems like many famous authors took cold showers: Goethe and Charles Dickens are the main two that come to mind immediately. I don’t think you’re weak but I think you can try to overcome your pain too. How many people have done all the things you’ve done with your life so far? They probably would’ve gotten worn down and broken way before you started what you did. Your book is probably the most challenging thing I’ve ever read. I read both parts of Faust in a week and like I was performing it, and your books take me way longer. I’m actually rather skeptical that you or any of your author friends have an innate chronic pain condition rather than just wearing yourself out writing incredible ambitious books that no one really seems to think of as that incredible or ambitious because they’re too dumb to appreciate them. However, I’m going to reserve my judgement for the time being.

        • Neutronium dense, laserbeam bright
          Mighty, immense, and infinite.

          When human will can do so much
          How can it fail on simple touch?
          How can the sure and potent brain
          Falter before the bite of pain?
          And on the whole is it not shoddy
          To tie the soul to this soft body?
          The mind that soars, that loves, that dreams,
          To pain that bores and aches and screams?
          The spirit’s glory mired in mud,
          The joyful story drowned in blood.
          Can’t we transcend torments and sighs?
          If flesh would mend, surely we’d rise?

          But no. We’re meat. The body’s us.
          This flesh our seat miraculous.
          Body and soul bounded by ail
          We’re limited, and small, and frail.
          And yet we strive and learn, believe,
          While we’re alive, we will achieve.
          Through all the traps about the heart
          We tear the scraps to bend to art.
          Doing our best although we hurt
          We breathe and rest, and still exert.
          Working around the pain we feel
          And on this ground, the pain is real.

          Sometimes with aid, sometimes alone,
          With what we’ve made, or dreamed, or grown.
          But we go on, each breath by breath,
          Aware, we know, we’re bound by death.
          For what we make will live and grow
          Beyond all ache that people know.
          It helps like sunshine, helps like hope,
          It is a lifeline as we cope
          Here at the last there are no ends
          We work with past and future friends
          To make things better every day
          And break each fetter in our way.

          Diffuse as cloud, a flickering light,
          Fragile and proud and infinite.

        • exurbe said:

          I went to bed thinking about this one, and I want to answer it largely because the questions led me to what I think are some valuable articulations that I’ll likely gather into a follow-up post. First here is a summary of the particular study I was looking at:

          As you can see this one is specifically about abdominal pain (which is what I have) in which the extremely complicated neural systems of the gut are involved in ways we’re just starting to understand. So the capsaicin treatment question got me thinking about how to describe what we do and don’t know about pain. Right now medical science is realizing that pain is an extremely complicated system, many parts, many changes, and we’re only starting to understand it and how it works differently in different times and circumstances. And that is what led me to what I think is a useful simile is how difficult it is to keep track of sustainable seafood. We want it to be simple, want to be able to sit down in a restaurant and look at the menu and know that (for example) cod is eco-safe but salmon is eco-bad, or vice versa. But it isn’t that simple because it depends enormously on where it’s from and whether it’s farmed or not. But it’s not even as simple as farmed fish being good and wild bad or vice versa because it depends on how it’s farmed (farmed trout is often good, farmed salmon bad unless it’s one of the new inland farms…) and for wild fish it depends on which fishery, and whether it’s nets or trawls or hook & line, and you can’t have that kind of conversation with a waiter (“Excuse me, can you check whether this Alaska Bay black cod is hook and line caught? And in which river mouth?”) and yet that’s genuinely the level of detail you need to determine whether the fish in question is damaging the seas or not. (Hence the importance of labeling, regulation, tracking, and certification systems which are trying to catch up.) And I think understanding pain is very similar, that the nervous system is extremely complicated, and many of its functions are counter-intuitive. Cold showers which are brief experiences of pain (in which you’re in control of length and frequency!) do indeed pep one up; capsaicin is indeed a repeated pain reaction but has positive effects for healing sports injuries, but other repeated pain reactions, of different scales, in different places, with different nerves, at different frequencies, especially long and protracted ones, have extremely destructive effects. We’re starting to understand that the body and brain are well-set-up for the kinds of sports injuries things like heat/cold/capsaicin treatment work well when repeated over months (which is a normal duration for a healing process), but not over more than a year, which is what my pain has done – and indeed I didn’t the mental effects until I’d had the condition for years. So just like every fish species, and fishery, and fishing technique is different and adds a level of complexity that we struggle to understand, the different factors with pain (duration, frequency, where it is in the body, size and length of nerve bundles…) make pain have radically different and unexpected effects. It’s why pain science is still cutting edge despite there being so much of it. And it’s why we have good reason to hope there will be great strides in our understanding of pain over the coming years.

          My second thought was about the question of authors pushing ourselves to illness. And here I’d like to use the broader term “vokers” or “vocateurs” which, for those not familiar, is a word I use in my novels to refer to those of us whose work is our passion, something we do because we love doing it and feel it’s worth doing and would do even if economics didn’t require us to work for a living. A voker can be an author, or a researcher, or a teacher, or a gardener, but it’s a different relationship with work, and many vokers work extra long and/or intense hours because it’s our passion. So the question on the table is whether my chronic pain (and those of other authors/vokers) is BECAUSE of how intensely I push myself, rather than an independent condition.

          The answer is definitely BOTH. Because I do push myself hard, hard enough that I get run down, and it hurts me. The repetitive strain injury in my wrists that made me have to give up violin for over a decade, that was because of typing too much, working too hard. The period when I lost the ability to move the fingers on my right hand, that was overwork. The incident in April of this year when I and a bunch of collaborators all contracted the same virus after running an intensive event but I took 3+ weeks to recover (and STILL have gook in my lungs…) but everyone else was better in a few days, that was indeed because I’m overworked and run down. And I have many author and voker friends who have similarly developed pain and conditions caused by the way we push ourselves to our max to fulfill our goals and advance the human condition.

          But no amount of overwork caused me to inherit this hereditary PCOS condition, or to have Chron’s disease. No amount of overwork caused my voker friends to have degenerate spine discs, dysfunctional cartilage, genetic disorders, nerve damage from car accidents, fibromialgia, or many other really serious (and in many cases life-threatening or life-shortening) conditions. Being an author/voker HAS led me to often be bad about self-care, to do a bad job taking care of my condition, and thus making a bad thing worse, but it didn’t make the bad thing be there. And if the bad thing weren’t there, if I didn’t have PCOS+Chron’s, then the consequences of pushing myself too much would be a little less, just that precious little less which would mean that, even if I was sick for those three weeks in April due to wearing myself down, I wouldn’t have been sick AGAIN this week and lost another three precious days, and the word count I will not make back. If I didn’t have Chron’s and PCOS I would write more novels in my life, and nothing can change that. And I have author friends who don’t have conditions like this, and who (from my POV) just get to push and push and write and write and I envy that so much. So much. So much it makes me angry when I let myself think about it.

          Thus my synthesis: I (many people) do make some of my pain by pushing. But if I didn’t also have the conditions I do then I could get away with more pushing, and the pain that pushing caused would be less severe (costing me one day this week instead of three, perhaps). And Terra Ignota book 4 would be done and out by now instead of years late. And I would be able to be more certain that the next series I want to write will get written. And that certainty would mean EVERYTHING to me. But I don’t have that. What I do have is the need to be severe about self-care, about resting, about rationing my work time and, even when I’m desperate to stay up this time and push on toward the amazing scene that’s coming next, to force myself not to when I know the price will be losing more words later (as pushing Tuesday this week cost me all of Wednesday and much of Thursday).

          And that’s why the Utopian oath (also from my novel) doesn’t just involve promising to work as hard as one can to advance the path away from death and toward the stars, it ALSO involves promising to take the rest and play one needs to advance that achievement. A solemn oath to take care of one’s self. And that, not the working hard part, is the half that I and many with Utopian inclinations find hardest to keep. I hate self-care. I hate putting down the Pen (keyboard actually) to lie there and listen to audiobooks and stare at the ceiling and watch my enemies advance — our old, constant enemies Time and Mortality. Friends make the self-care bearable, make it warm and rich and full of people and powerful friendship that’s often so great and sustaining it’s almost worth it. But that’s a lie – it’s not worth-it, not one fraction, not compared to writing one more paragraph, advancing the Great Project one more inch.

          So that’s how it feels to me at least, the balance/difference between work-exhaustion and these weaknesses of the body that drag us down, and keep us from producing what we want to, what we see friends and fellow authors/vokers produce who are fortunate enough to face only the kinds of pain they can control. The light is so fragile, so fragile, the light we work to hold against the dark. I want to make it stronger, the strongest I can make it be before I pass it on, but too often the strength I try to give it is sapped already by the other dark inside me, pain, dragging it down. It’s very real. And the only thing that I can do about it is still give the strength I can and try not to think too much about it, since the rage itself exhausts me, saps my strength. Strength I need to save for that next paragraph, next line, next letter of my little alphabet.

          When I got up this morning it felt like today would be pain free, but it’s setting in now; time to do as much as I can before it sets in all the way and I can do no more. (That sentence is true, but take it, expand it over a lifetime, and it’s even truer.)

          Which is why teamwork is even more important. Pass it forward. Pass it on.

          • excessivelyperky said:

            I have a free copy of Dragon Naturally Speaking 13 and a headset (long story, stupid ordering, inertia…). Would you like it? Once you have it trained, typing will still occur but not nearly so repetitive. Contact me on my email and give me an address and I will pop it into the mail.

          • Michaela McKuen said:

            Please hear this out: I don’t think doctors know very much about these conditions. Some of those are chronic pain conditions, some of those are neurological, some of them are related to the skeletal system, so right off the bat I wouldn’t throw them all in a bucket as “chronic conditions causing pain” any more than I’d throw together broken bones, pulled muscles, Athlete’s foot, hernias, and concussions as “conditions affecting athletes.” I do think many pain conditions are psychosomatic but that shouldn’t be a dirty word. If you push your mind further than most people, you can hurt the same way as someone who pushes their body further than most (like an athlete) can hurt their body. Hurting yourself from pushing yourself doesn’t mean you’re weak, but rather the opposite. Was mich nicht umbringt, macht mich stärker! however, since our society identifies the person with the mind, admitting that your mind is better because you pushed yourself causes an inferiority complex so people would rather just turn it around and say you’re bad and weak rather than helping you push yourself more effectively. Physical conditions interfering is another can of worms in some ways but not in others and I can write more on that if you’d like. You should probably just picture me in Humanist boots now. I think if people try to put limitations on you that would invalidate your entire life, you should just say “to hell with it!” and ignore them no matter what the risk. You only get one life to form yourself, and that’d be true even if it went on without end.

          • Michaela McKuen said:

            At least you got to the part of Perhaps the Stars where you make a joke at the expense of Ganymede’s butt, right?

        • Grace K said:

          Hi Mikaela! As another sufferer of Crohn’s disease and chronic pain, may I suggest that you check out Doing Harm by Maya Dusenbury? Dusenbury is a stellar journalist with rheumatoid arthritis that artfully discusses the culture of chronic illness, the medical profession’s history with pain, and current research on the topic. I think you will find it enlightening.

  5. Grace K said:

    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.

  6. MoTLD said:

    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.

  7. 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 🙂

  8. Christopher Carpenter said:

    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.

  9. Michaela McKuen said:

    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.

  10. Michaela McKuen said:

    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.

  11. Alex Marianyi said:

    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.

  12. 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…

  13. 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.

  14. […] 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” […]

  15. kiwano said:

    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.

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