Merry christmas to chronic pain

What does it feel like to be a bat?

The philosopher Thomas Nagel once asked this question in a famous essay (“What is it like to be a bat?”), an essay that has sparked endless debate and still does today. For me, the answer is simple: I have no idea.

To truly know, you’d have to be a bat, or at least ask one. We don’t share their senses, and we don’t have a common language that lets us step into their world.

What does it feel like to be blind or deaf? You have to actually be blind or deaf to understand what living with that kind of sensory loss is really like. Stories help, but only up to a point. You can put on a blindfold or earplugs and maybe get a better idea, especially if you keep them on for a while, but you’d still know you’re doing it by choice and that you can undo it whenever you want.

What does it feel like to live with chronic pain? You have to be a chronic pain patient to know, or you’d have to ask one. You might get a small taste by wearing shoes two sizes too small, putting on a helmet that squeezes your head, or cranking up the heat in summer or the AC in winter until you feel miserable, but even then you’d know that relief is just one decision away. You’d know the cause. You’d know the fix.

Chronic pain patients don’t know either.

Those lines above were written by Arturo Goicoechea at the beginning of his book “Chronic Pain Is Not Forever”. I thought they were fitting to share here on the TMS Wiki, this place where I’ve been documenting this journey, hoping that one day rereading all of this will feel like nothing more than a bad memory.

In the book, Goicoechea argues that the entire system has failed people living with chronic pain, the 20% of the population who are trapped in an experience they can’t make sense of. He explains that the way out, in his view, is pain neuroscience education: helping people understand what’s actually happening in their bodies, challenging old beliefs, realizing that pain without damage has its own logic, and connecting the experience to the nervous system and the brain.

Alan Gordon, an american pain therapist who has worked on this for years, shares the same idea, Dr. Sarno also talked about all of this back in the 90s: that chronic pain grows out of repressed emotions buried in the subconscious, and that the herniated disc showing up on an MRI often has nothing to do with the pain. You probably had it long before. A disc bulge is basically like a gray hair. Everyone gets one. It’s part of aging. Of course there are exceptions. If a rugby player slams into someone and ends up unable to move because a disc literally blew apart, that’s a different story and surgery makes sense.

Today is Christmas. A day that’s supposed to feel different, lighter. Instead, it feels heavier than most. I’ll probably end up in tears. I’ve always been a sensitive guy, but this nightmare has pushed me to places I never imagined. Maybe it’s sensitivity, maybe it’s just exhaustion, but the tears show up anyway. It’s not easy admitting you feel like you’re losing the fight, and that despite everything you’ve learned, nothing is holding you up anymore. Not even the success stories motivate me at this point. It doesn’t matter what I do, how much I read, how much I meditate, how many months I’ve spent trying to rewire my brain, or the fact that I know my lower back is structurally fine (my MRI is clear btw). The pain is still here, just as intense and just as constant as on day one. No progress. Not in the pain, not in my mood. Nothing. If anything, every month is worse.

But how? I reached Goicoechea’s conclusion at least six months ago, the same conclusion that says that persistent pain is generated in the brain, not the back. Getting there wasn’t easy, since the whole nightmare started with a bad move at the gym. I’ve been trying to retrain my brain. I’ve been doing PRT (Pain Reprocessing Therapy) for two months. Why is nothing budging? Why hasn’t the suffering eased even a little? I have no idea. It feels like that exposed wire in my brain is still sparking nonstop.

I know these processes take time. Javier, a former patient, explains this really well in the podcast where he shares his story. But then there are the other cases. The people who read Dr. Sarno’s book and wake up cured the next day. It happens, unbelievably. Just look at any YouTube comments under Sarno videos or the reviews on Amazon: thousands of grateful people. And of course they’re grateful. After years of suffering, they tried EVERYTHING, then found the book, read it, and got better. It makes perfect sense that someone made a documentary about him. They’re the minority, obviously. Most people have to do the mental work after reading. And I’m doing the work. Therapeutic writing, meditation, practicing indifference, trying everything. None of it works.

I’m so exhausted, mentally and physically, that if someone told me I only had to endure two more years of this and then I’d be completely healthy, I’d say, “I don’t think I’d make it.” Not even with a guarantee that I’d be at a hundred percent. I’m worn out. I don’t know if I have a lower pain threshold than most people, or if my pain is actually that intense. All I know is that the agony is extreme and constant, and I don’t feel like I have the capacity or the endurance to keep going like this much longer.

So many dreams, so many plans, so much I wanted to do, so many years of studying, so much effort (I’m 25 btw). The universe doesn’t care.

Schools should teach us to value every moment of life, to not run on autopilot, to understand that nothing is guaranteed. Something as simple as stepping outside for fresh air should be seen as a privilege, a small pleasure that not everyone gets. That classic line our moms used to throw at us when we didn’t want to finish our vegetables, “Eat because there’s a kid in Africa who’s hungry,” is not enough. Kids should be taught to see life from a deeper, more conscious perspective.

I don’t know what’s going to happen to me. The idea of suicide terrifies me. I’m not religious. I don’t have faith. I can’t picture some happy afterlife. I don’t believe in reincarnation or anything like that. I tried, but it doesn’t work for me. I envy people who believe. I don’t have that luxury. Faith isn’t something you can force. It either shows up or it doesn’t.

At the same time, the idea of living many more years like this terrifies me too. If the suffering were only mine, fine. But I feel like I’m dragging my family down with me, and that’s what hurts the most. I would give anything to be healed if it meant they could stop suffering. Juan Emilio, a guy from Spain who reached out to me and whose case is identical to mine, didn’t see improvements until year five of constant pain. Javier felt better after two years. Hugo felt better after six months of intense cognitive behavioral therapy. Was he lucky or am I doing something wrong? I don’t know. There are no rules, no timelines, no roadmap. Every body and every brain is unique. My path could go anywhere.

In the show Naruto, there’s a character named Itachi with an ability called Tsukuyomi, a genjutsu that traps the victim in a warped sense of time. What feels like years inside the illusion is only a few seconds in the real world. Itachi can torture someone psychologically for what feels like an eternity while almost no time passes outside. He’s so skilled he can stretch seconds into months or years for the sake of torture. Inside the jutsu, the victim is subjected to a hellish loop of pain and horror with no idea when it will stop. Eventually, the mind collapses. It doesn’t matter how strong the person is. They’re completely powerless, which is why Tsukuyomi is feared as the strongest genjutsu.

What I’m living through feels a lot like that. Pure madness. And yet I’m still here, still fighting. I love my family. I have them tattooed on my arm. I keep going for them too. For them and for myself. Until my mind breaks completely. I hope it doesn’t get to that point. Kakashi Sensei survived Tsukuyomi and told Itachi to get lost. I hope I can do the same with my pain.

 

Once again, and i am terrible at this, but make peace.

Accept that youre a cripple, and try to make your life better as a cripple. Try to see the positives in your day. All this sounds like desperation. If you woke up without eyes one day, would you spend the rest of your life trying to see, or would you make do living as a blind guy? I'm half deaf, I was born that way. When i go to forums of single sided deafness, the people are miserable, catastrophic. They doubt theyll ever live again. I personally, being born this way, have never once suffered or felt desparation because of not being able to hear through one ear. You know how crazy that is? If i got the choice to hear with both ears i would never take it, i have never felt the need in my life.

Life is about perspective. Obviously we are filled to the brim with desires, but in your situation, fighting has not worked. What can you do to make your day a little less miserable?

 

I was planning just to respond to your other post, but you got my attention with this one. This is hardly related, but I have a friend who started a band in the 90s based on that essay, What is Like to Be a Bat? In her case I think it had more to do with liberation and feminism—but there is some throughline there about seeking freedom beyond the body and senses. In any case I loved reading your response to it—you have an incisive way of thinking and writing that is engaging to read, even though I know you are deeply struggling.

It's a strange phenomenon on this forum that people like us find ourselves called to reply to each other in this way. I don't know you, or @Mani , and yet I see aspects of myself reflected in your writing, although I can't claim to know your struggle (though I can tell you for sure that I am also going through it—and just maybe coming out the other side).

You mention a character from Naruto as an inspiration. Someone who endured horrible pain and survived through sheer force of will. This is a very masculine way of looking at things—it's the way that we are conditioned as young men to deal with our struggles; to tackle them head on, to put more pressure on ourselves, to fight until we can't fight anymore.

Here's another story.

Have you ever seen Howl's Moving Castle? I've been thinking about how it's almost a perfect metaphor for recovery from TMS. No, I'm serious:

In the movie, the girl Sophie works in a hat shop and is infallibly polite to her customers, even when they are rude. When the terrifying Witch of the Wastes appears, she treats her as she would any other customer, even though the witch is incredibly rude—if Sophie doesn't have repressed anger, I don't know who does!

For the "crime" of trying to be nice, she is cursed by the witch to have the body of an 80-year-old with all the accompanying aches and pains and loss of mobility. The next morning she wakes up and is terrified to realize it isn't just a bad dream, the curse has stuck around and it isn't going away. Sound familiar?

She doesn't know what to do except to travel into the wastes—withdraw from her family and friends and society. Again, doesn't this sound familiar? Along the way she constantly complains about her aches and pains and even tries to send away the one person—the animated scarecrow—that tries to help her by giving her a walking stick.

Eventually she finds a new home with the wizard Howl. But Howl can't just cure her—the curse is too powerful. Instead, she stays around the castle and effectively becomes his new cleaning lady. She can't do much with this new body, but she can cook and clean, and make friends with her new companions in the castle, most of whom have their own curses and predicaments.

Partway through the movie, she gets fed up with the castle being a mess and goes on a cleaning rampage. What does this remind you of? Returning to physical activity, "the more vigorous, the better"!

Slowly, she begins to forget about the curse and starts to care more deeply about the other people who have come into her life. Howl can't cure her directly, but as she helps him with his own problems and takes charge of her life, standing up to some of the things she might have shirked from before, she begins to believe in herself more and without noticing it—the curse starts to fade. She starts to look younger, and her voice changes from an old woman's back to what it was.

Now if you've seen this movie you might say that it's the power of love—Howl's love—that causes the curse to start fading. But I would challenge that: there's a telling moment when she seems to have completely reverted to her younger self and is prancing through the fields. Then an airship appears—there's a war going on—and Howl attacks it. The visceral fear of this moment immediately sends her back to feeling and looking 80 years old. His belief in, and affection for her might be helpful and encouraging, but it has nothing to do with breaking the curse. To do that, all she needs to do is believe in, and have compassion for herself. And to forget—!—that this has ever happened to her.

At the end of the movie the curse is broken. Sophie becomes young again. But her hair never returns to its original dark color, it stays grey—she has been forever changed by this experience, and not for the worse, but for the wiser.

Tell me that doesn't sound like what Sarno tells us to do. Forget our symptoms, return to physical activity, but most importantly, believe in ourselves, have compassion for ourselves and the way we are—we are sensitive people in a world that doesn't have a lot of empathy for sensitive people—and give our attention to the people around us and the things we need to do, whether that's household chores or something much harder, instead of letting our symptoms—the curse—steal it away from us.

That's all. I realize this will probably strike you as ridiculous, but hey, if you went for Naruto, I thought maybe this would strike a chord with you. I know it moves me and has been helpful to keep in mind lately.