Hi folks, nice to meet y'all, I'm Zoë 
hopefully I'll find lots of things to talk with y'all about ultimately, but at least right now I wanted to ask people here for, I guess, advice or guidance on a point of difficulty I've had recently regarding zazen. I have a rare type of migraine disorder where I (a) have wild auras that are kind of like a grab-bag of stroke symptoms and occasionally last as long as 24 hours, and (b) often have migraines in continuous cycles that go on for as long as a few weeks, where I'll get an aura and then a new migraine right as the prior migraine is coming to an end, over and over, so I never get a reprieve until the whole cycle ends. I typically have about 5–20 migraines a month, each lasting somewhere between a few hours and a few days. The auras can be quite serious—during them I've completely lost consciousness (waking up confused in my partner's arms on the floor with the migraine just starting), forgotten how to read, and lost the ability to walk, among other things—but what I'm actually here to ask about is more in regards to the migraines that come after.
Basically, the pain during these migraines is something else!
It's kind of a sensation like someone is stabbing big white hot needles into my right temple, or the right side of my forehead is being crushed in a vice somehow. It's in a totally other world from normal pain—at worst it's honestly the most extreme pain I've ever experienced, the kind of pain where you totally lose control of yourself and thrash around screaming and not thinking at all. Usually it's not quite at that level—I'm helpless under those conditions so they're kind of irrelevant—but it's still something you can get totally swallowed up by, like it's the only thing happening in the universe in that moment. The migraines also come with strong, surreal dizziness, like my body is flying around the room or spinning in midair, and intense sensitivity to light and sound, among other random wacky brain things like constant pulsating high-pitched ringing noises and impossibly-colored undulating blobs that come and go in my vision and so on. I generally stay in a dark room and live my life at library volume until it passes; sometimes that means I stay in our bedroom for days or weeks.
Over the years, I've learned to get by during these migraines by constantly distracting myself whenever possible. I'll chat with my partner, read, study, write, do math, code, space out and think about my dreams last night or animals or something—anything I can get really absorbed in that doesn't require me to listen to loud sound or look at something bright. If I can stay focused on an activity like that, the pain and discomfort mostly fade into the background and I don't notice them too much, so they have less of an impact on me and I can kind of function and get work done and things. My attention will wander back to my body now and again, and for a few moments it'll be like I'm drowning in pain and dizziness, but I'm practiced at gently redirecting my attention back to whatever I'm doing and letting those sensations fade into the background (a trick I got keyed into from a dentist I had as a child who distracted me by talking continuously while he stuck that weird anaesthetic needle thing in my gums, which somehow made it not hurt at all; at one point my attention wandered to my mouth and he noticed me startle and wince and calmly said "stay focused on my voice" and I had a kind of revelation
). When I first started having migraines in my late teens, I wasn't very good at handling them this way and would mostly just lie in bed in agony, but through hundreds of "training sessions" it's a well-honed skill now. I'd be lying if I said I wasn't grateful for that, even though in a way it doesn't seem very Buddhist.
However, on that note, recently I've decided that I'd like to have another go at keeping up a daily zazen practice. The trouble is that I'm currently on day 18 of back-to-back cyclic migraines with no sign yet of stopping. I've never tried to do zazen during one of these long cyclic episodes until now (it's been a long time since I had one this long); in the past I've fit it in around the migraines, but I don't have that option right now. It's very different from "normal" zazen (if there is such a thing) and I'm actually finding it a huge challenge to maintain for even a few minutes. ;-_-
As they say, in zazen there's nowhere to run. The moment I sit down and settle myself, the pain comes screaming into my consciousness at 1000 dB like a constant airhorn right next to me. It really makes me aware of just how much I'm putting it out of mind normally! Based on my experience doing zazen in this state I would go so far as to say that my distracting myself is a more powerful pain reliever than anything I've ever been given for pain short of morphine—I don't think I really appreciated that until now. Once in zazen though that all goes away in any case. It becomes almost impossible not to clench my teeth together very tightly; no matter how much I try to relax it just happens continuously, mostly beyond my control it seems, like I can kind of stop doing it by about half if I focus all my attention on it but if I try to return to equinamous general awareness I can feel the tension ratchet all the way back up again despite myself. I become very aware of all the loud distracting high-pitched ringing sounds going on, and my eyes fill with tears periodically in an automatic, mechanical way as the pain rises and falls on whatever weird logic it follows. Just staying centered and calmly regarding everything evenly is something that only materializes for what seems like fractions of a second; mostly I just find myself thinking pathetically about how wildly and surreally unpleasant it is and how badly I want to stop and do something to take my mind off it all. It feels kind of like trying to balance a plank of wood on a sewing needle.
What is there to make of all this? ;^^ I'll be honest, the longest I've managed to keep it up so far is four minutes, and I can't really say if what I'm doing even deserves to be called zazen given how completely distracted and scattered it is. It feels embarassing—for example I've read "Zazen, A Better Way of Experiencing Pain" by Nishijima, and he says don't try to overcome it, don't fear it, accept it, just be with it. Sounds so reasonable and mature...and yet, even though I know intellectually there's nothing to fear and it's just sensation, my "reptile brain" has become convinced that I'm attempting something really dangerous by doing zazen in this state and gives me a big jolt of adrenaline when I sit down. So, even though I'd really like to just follow Nishijima's advice and think it makes sense, it's kind of like my viscera have other ideas. Likewise I think of Kodo Sawaki saying that if he was a mouse and a cat caught him, he would just sit zazen and not let the cat have any fun with him. Surely that would hurt! But even though I try to just stay cool as a cucumber like that, the tension, tears, wobbling from dizziness, etc. just happen kind of mechanistically, like my body has gone rogue and is trying to thwart my attempts.
Do I have the wrong idea somewhere about anything? (Well, I'm sure
but in this post, I mean. ) Normally I think of zazen as something I'm just glad if I manage to work into my day, I would never have any fear of it, and I don't have any trouble doing it for 20 minutes normally, so it's strange to have it take on such different qualities under these conditions, like it's morphed into some kind of trial by fire. Should I just keep up my daily attempts and do it for as long as I can manage each time? On some level I suspect that's all there really is to say, but I figured I would ask just in case.
P.S. In case anyone worries that I might be neglecting the medical side of all this, I see a doctor at least every three months and am on a variety of medication for it. The medication helps—one type I take daily cuts down somewhat on the frequency of the migraines, another will stop a migraine when it starts but I can only use it a few times a month, etc.—but obviously it's far from a cure on the whole. My doctor has told me to go straight to the E.R. a few times after especially scary auras, to make sure it wasn't actually a stroke or a seizure or the like, so I've had MRIs and neurological inventories and so on done and it doesn't seem like I have a brain tumor or anything like that. It's probably a genetic condition as far as I understand things—most of my close family members on my mom's side get migraines too, I just seem to have an especially severe case. (As a maybe-interesting scientic side note, I've read that the kinds of symptoms I have are often caused by genetic mutations that cause a defect in one or another type of ion channel in neurons in the brain, causing the neurons to be overactive and fire too readily and periodically kind of glitch out, in a way which leads to the bizarre aura symptoms.)
hopefully I'll find lots of things to talk with y'all about ultimately, but at least right now I wanted to ask people here for, I guess, advice or guidance on a point of difficulty I've had recently regarding zazen. I have a rare type of migraine disorder where I (a) have wild auras that are kind of like a grab-bag of stroke symptoms and occasionally last as long as 24 hours, and (b) often have migraines in continuous cycles that go on for as long as a few weeks, where I'll get an aura and then a new migraine right as the prior migraine is coming to an end, over and over, so I never get a reprieve until the whole cycle ends. I typically have about 5–20 migraines a month, each lasting somewhere between a few hours and a few days. The auras can be quite serious—during them I've completely lost consciousness (waking up confused in my partner's arms on the floor with the migraine just starting), forgotten how to read, and lost the ability to walk, among other things—but what I'm actually here to ask about is more in regards to the migraines that come after.Basically, the pain during these migraines is something else!
It's kind of a sensation like someone is stabbing big white hot needles into my right temple, or the right side of my forehead is being crushed in a vice somehow. It's in a totally other world from normal pain—at worst it's honestly the most extreme pain I've ever experienced, the kind of pain where you totally lose control of yourself and thrash around screaming and not thinking at all. Usually it's not quite at that level—I'm helpless under those conditions so they're kind of irrelevant—but it's still something you can get totally swallowed up by, like it's the only thing happening in the universe in that moment. The migraines also come with strong, surreal dizziness, like my body is flying around the room or spinning in midair, and intense sensitivity to light and sound, among other random wacky brain things like constant pulsating high-pitched ringing noises and impossibly-colored undulating blobs that come and go in my vision and so on. I generally stay in a dark room and live my life at library volume until it passes; sometimes that means I stay in our bedroom for days or weeks.Over the years, I've learned to get by during these migraines by constantly distracting myself whenever possible. I'll chat with my partner, read, study, write, do math, code, space out and think about my dreams last night or animals or something—anything I can get really absorbed in that doesn't require me to listen to loud sound or look at something bright. If I can stay focused on an activity like that, the pain and discomfort mostly fade into the background and I don't notice them too much, so they have less of an impact on me and I can kind of function and get work done and things. My attention will wander back to my body now and again, and for a few moments it'll be like I'm drowning in pain and dizziness, but I'm practiced at gently redirecting my attention back to whatever I'm doing and letting those sensations fade into the background (a trick I got keyed into from a dentist I had as a child who distracted me by talking continuously while he stuck that weird anaesthetic needle thing in my gums, which somehow made it not hurt at all; at one point my attention wandered to my mouth and he noticed me startle and wince and calmly said "stay focused on my voice" and I had a kind of revelation
). When I first started having migraines in my late teens, I wasn't very good at handling them this way and would mostly just lie in bed in agony, but through hundreds of "training sessions" it's a well-honed skill now. I'd be lying if I said I wasn't grateful for that, even though in a way it doesn't seem very Buddhist.However, on that note, recently I've decided that I'd like to have another go at keeping up a daily zazen practice. The trouble is that I'm currently on day 18 of back-to-back cyclic migraines with no sign yet of stopping. I've never tried to do zazen during one of these long cyclic episodes until now (it's been a long time since I had one this long); in the past I've fit it in around the migraines, but I don't have that option right now. It's very different from "normal" zazen (if there is such a thing) and I'm actually finding it a huge challenge to maintain for even a few minutes. ;-_-
As they say, in zazen there's nowhere to run. The moment I sit down and settle myself, the pain comes screaming into my consciousness at 1000 dB like a constant airhorn right next to me. It really makes me aware of just how much I'm putting it out of mind normally!
Based on my experience doing zazen in this state I would go so far as to say that my distracting myself is a more powerful pain reliever than anything I've ever been given for pain short of morphine—I don't think I really appreciated that until now. Once in zazen though that all goes away in any case. It becomes almost impossible not to clench my teeth together very tightly; no matter how much I try to relax it just happens continuously, mostly beyond my control it seems, like I can kind of stop doing it by about half if I focus all my attention on it but if I try to return to equinamous general awareness I can feel the tension ratchet all the way back up again despite myself. I become very aware of all the loud distracting high-pitched ringing sounds going on, and my eyes fill with tears periodically in an automatic, mechanical way as the pain rises and falls on whatever weird logic it follows. Just staying centered and calmly regarding everything evenly is something that only materializes for what seems like fractions of a second; mostly I just find myself thinking pathetically about how wildly and surreally unpleasant it is and how badly I want to stop and do something to take my mind off it all. It feels kind of like trying to balance a plank of wood on a sewing needle.What is there to make of all this? ;^^ I'll be honest, the longest I've managed to keep it up so far is four minutes, and I can't really say if what I'm doing even deserves to be called zazen given how completely distracted and scattered it is. It feels embarassing—for example I've read "Zazen, A Better Way of Experiencing Pain" by Nishijima, and he says don't try to overcome it, don't fear it, accept it, just be with it. Sounds so reasonable and mature...and yet, even though I know intellectually there's nothing to fear and it's just sensation, my "reptile brain" has become convinced that I'm attempting something really dangerous by doing zazen in this state and gives me a big jolt of adrenaline when I sit down. So, even though I'd really like to just follow Nishijima's advice and think it makes sense, it's kind of like my viscera have other ideas. Likewise I think of Kodo Sawaki saying that if he was a mouse and a cat caught him, he would just sit zazen and not let the cat have any fun with him. Surely that would hurt! But even though I try to just stay cool as a cucumber like that, the tension, tears, wobbling from dizziness, etc. just happen kind of mechanistically, like my body has gone rogue and is trying to thwart my attempts.
Do I have the wrong idea somewhere about anything? (Well, I'm sure
but in this post, I mean. ) Normally I think of zazen as something I'm just glad if I manage to work into my day, I would never have any fear of it, and I don't have any trouble doing it for 20 minutes normally, so it's strange to have it take on such different qualities under these conditions, like it's morphed into some kind of trial by fire. Should I just keep up my daily attempts and do it for as long as I can manage each time? On some level I suspect that's all there really is to say, but I figured I would ask just in case.P.S. In case anyone worries that I might be neglecting the medical side of all this, I see a doctor at least every three months and am on a variety of medication for it. The medication helps—one type I take daily cuts down somewhat on the frequency of the migraines, another will stop a migraine when it starts but I can only use it a few times a month, etc.—but obviously it's far from a cure on the whole. My doctor has told me to go straight to the E.R. a few times after especially scary auras, to make sure it wasn't actually a stroke or a seizure or the like, so I've had MRIs and neurological inventories and so on done and it doesn't seem like I have a brain tumor or anything like that. It's probably a genetic condition as far as I understand things—most of my close family members on my mom's side get migraines too, I just seem to have an especially severe case. (As a maybe-interesting scientic side note, I've read that the kinds of symptoms I have are often caused by genetic mutations that cause a defect in one or another type of ion channel in neurons in the brain, causing the neurons to be overactive and fire too readily and periodically kind of glitch out, in a way which leads to the bizarre aura symptoms.)
This was such good advice, I appreciate it so much, thank you. I managed to sit for half an hour today with this approach. There were tears, there was much gnashing of teeth, there were times I felt like a small scared shivering animal in the cold and wanted to run run run run, but by just letting these things happen and not trying to "move past them" or chastise myself for them or the like, I was able to make it much easier on myself even though in a way it was still just as intense. I didn't realize how much I was kind of compounding the discomfort and difficulty by how badly I wanted it to be like "normal" zazen and resenting how challenging it was for me to "keep it together" and other such things—ironically that really added to my troubles! This time I tried to just acknowledge that something in me was reaching for that, true, just a fact, and something in me was shedding tears and gnashing teeth, true, just how it is, and something in me wanted to flee and felt small and pathetic and even ashamed, also true, part of life right now, and the cat was sleeping and it was a bit warm and some cars drove by, all just various phenomena…I think like, heavy pain can produce a wide array of intense reactions at once, of all different sorts, and when they're all coming at you with no filter like that it can be easy to get caught up in trying to slap them away and being like "no! no! no! stop!" and forgetting the larger picture.
and thanks again so much for your help and advice.
But you expressed this so well, and it sounds right on to me. 
Yes, just like this! 
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