on-going mostly unedited stream of thoughts

when my body goes rogue

[cw: pain, death] Yesterday I started experiencing pain in my body again. It is difficult not to feel low when it happens. I think chronic pain snowballs into a form of ptsd, where every attack triggers all the trauma and feelings of the previous accumulated experiences. 

The pain I experienced yesterday wasn’t even that bad relatively, but it is also the sort of pain that may trigger the debilitating pain I live in fear of. If I’m lucky it fades overnight – my body has managed to overcome the crisis somehow, if I’m unlucky it starts imploding during my sleep. I have no idea how it would unfold, but I try my best to avoid the latter. But sometimes there is no avoiding: I have learnt that when extreme pain happens it would seem like it was triggered by something minor, but probably at that point it was already accumulating in the background for days if not weeks. The wave has to crash some day.

I started wondering about the point of my existence, and the burden I can be to my partner. I think about all those times I had grand aspirations only to be thwarted by pain. I think about the fact that the last update to the learning network project was 6 long years ago, and I was not able to work on it since then. I am not sure if I have lost interest in it, or that the memory of working intensely triggers painful memories of pain, that each time this sort of intense work has been harmful to me physically, so any desire I have to make something complex has gradually died over the years. I don’t allow myself to have grand ideas anymore, because I know I wouldn’t be able to execute them. People who used to know my working self would know how far is this departure from my former self…I was the person who was always brimming with ideas, always making prototypes, always having some brightness in my eyes as I talk about them. 

That light in my eyes has died a long time ago.

My partner asked: what about the writing, the photography? I know I should feel lucky that I am still able to do some of these things because I know of people who can’t even get out of bed. But am I still allowed to grieve to have lost such a part of myself? I asked her in return how would she feel if she could no longer work on the projects she works on: last year she had a bout of illness which rendered her bed bound for a long while so she had an inkling of what I’ve experienced over the past few years. She had to agree with me that it is entirely reasonable for me to start contemplating my existence. To be able to make things is so much part of her, probably at an even higher intensity than me.

What I am truly grateful for is to have at least one person who is not dismissive of my pain and feelings – that I should be grateful to be simply alive because look at all the people suffering out there. This argument may work on people who actually like living, but I was never really into it in the first place. But I berate myself repeatedly anyway: I should be grateful. But don’t you think it is quite perverse if one can feel better simply by knowing there is someone else who is worse off? Isn’t pain a very personal experience? Does seeing deeper wounds make mine hurt less? Knowing there is immense suffering out there only serves to thin my already precarious relationship with life. But maybe the difference is most people have some will to survive. Mine is like a flickering flame about to go out anytime.

I feel like I am already more than halfway through my lifespan and my wretched relationship with life has not improved. We can only perceive the world through our very own lenses in our minds. Mine has been broken since I was conscious. Is it possible to overcome something so deeply embedded in me? Is living a few good years worth all the physical, emotional and mental pain I’ve endured? 

Someone who is supposed to be close to me asked me recently if my migraines are psychosomatic – that my anxiety is the cause of their emergence. (This is why I am in solidarity with long covid sufferers, it is not enough to suffer, we still get shit like this on a frequent basis.) It is tempting to write a long essay here examining what we think of as psychosomatic and what someone really means when they say that. But maybe I’ll save that for another post. But okay let’s just assume that my migraines are psychosomatic. Do you know what it is like to live in a body with a brain that automatically generates physical pain for us because our nervous system is out of control? It is not just pain, but the sort of pain that makes death seem like the blissful state. It is not as though I can say, hey brain, please stop, please stop making me so anxious that you brain start going into an energetic crisis and melt down into excruciating pain. 

Imagine wearing a mask that fits so tightly that we cannot breathe. Now imagine being unable to remove that mask forever. That’s how it feels like living with my brain. How do you think it feels to be permanently melded with something that seems to be trying to kill me slowly? Am I supposed to feel shame that I have a rogue brain whereas everyone else seems to be in perfect control of theirs (lol)? Is it supposed to make me feel better that my pain doesn’t have a “real” cause? 

[Okay this is where I break to say the brain can’t differentiate mental and physical stress so it’ll flood us with stress hormones anyhow and will cause physical illness. One of the biggest factors of any disease isstress. It doesn’t matter of an actual lion is trying to kill you or your boss is being an asshole. Here’s a book if you would like to read more about this.]

I try to look for the bright spots, to search for beauty in the ordinary. But I am not sure if I do it simply because I have no choice. I have to distract myself with something, anything, or face an unbearable abyss for the rest of my life.

My partner tells me I am not always like this. The version of me that writes an entry like this. I guess if we read my writing long enough, I do oscillate between this and seemingly more positive states. I tell her this version of me is my most authentic self. I wear a mask otherwise, to be socially acceptable, to be less of a burden to my partner, or to even be acceptable to myself. Is this true? I don’t actually know. When I am here, it feels like I’ve always been here. 

I guess I just need to give this part of me a voice sometimes. I tell my partner I am very tired of always trying. She tells me it is okay to stop trying. At least for a few days, to give myself a break. This time I decide to listen to her, so here I am writing a post like this.

related notes

6 thoughts on “when my body goes rogue”

  1. Meng says:

    Hang in there Winnie, you clearly are going through a very rough time. It is not easy to feel so limited by bodily pain beyond our control. Thank you for writing so beautifully about your struggles; they are an inspiration to me and many others.

    1. Winnie says:

      thank you for your kind enduring support. 🙂

  2. Dmitri says:

    Thank you, Winnie, for sharing all of your authentic selves, not just the ones that are positive or comfortable for others. While I don’t experience what you do, the questions you raise and the experience of trying to communicate your truth to others only to have them dismiss it really resonate. I hope the latest wave of pain recedes soon. Hang in there.

    1. Winnie says:

      Hi Dmitri, thank you for stopping by and taking the effort to leave a comment. 🙂 Also thanks for noticing that I’m trying to share all my selves, not just the feel-good ones. I’m really glad that you resonate with some parts of my writing, that’s the main driving force behind why I write.

  3. joe jenett says:

    Color me inspired! You probably have no idea how helpful your authenticity is to others. It is.

    I’m well past halfway through my lifespan and also struggle with some limitations and similar feelings. I have to say I envy your ability to just come out and tell the story as it is. I’m still working on that but I think you’ve nudged me a little closer to being able to tell my own story without fear. Thank you Winnie.

    1. Winnie says:

      Hi Joe, really nice to see you here. 🙂 I really have no idea how writing my truth may be useful to others…often it feels like a pervasive sense of discomfort I am bringing to the world.

      I try to write as it is because it is cathartic for me…and maybe because this seems like one of the few things I can seem to do. It is a muscle though, I used to be filled with a lot of shame and fear after hitting publish, but got used to it over time. It still feels lonely though at times. I think ultimately it is the question of: what do we wish to do for ourselves versus for others? I think we spend a large part of our lives living for others, so sometimes we just have to do some stuff for ourselves.

      Thank you so much for stopping by!

Leave a Reply

Your email address will not be published. Required fields are marked *