nautilus depths cosmology: part three
into the body, up and out. rebirth along the edge of death.
Build thee more stately mansions, O my soul,
As the swift seasons roll!
Leave thy low-vaulted past!
Let each new temple, nobler than the last,
Shut thee from heaven with a dome more vast,
Till thou at length art free,
Leaving thine outgrown shell by life's unresting sea!
Oliver Wendell Holmes
This is only the first thing I will write here. One day it will feel so absurdly distant, as if it happened to someone else. It is mostly a compilation of personal stories and wanderings over the last three-ish months since I moved to Dallas, as well as some bits about my body falling apart for four years like Humpty fucking Dumpty (in a way that almost no doctors were able to understand or put back together.) It’s about saying yes or no. It’s about giving up on love but not really. Maybe you can tell me what it’s about.
The way I put this piece together is a bit like a nautilus shell.
![Shell function The shell of the chambered nautilus fulfills the function of buoyancy, which allows the nautilus to dive or ascend at will, by controlling the density and volume of the liquid within its shell chambers.[14] This was found during research done in New Caledonia on nautiluses whose shell chamber fluid densities were tested at various depths, weeks apart.[14] Generally speaking, chambered nautiluses inhabit a depth around 1000 feet, although further tests demonstrated that they can, and do, dive deeper.[14] However, there are hazards associated with extreme depth for the nautilus: the shells of chambered nautiluses slowly fill with water at such depths, and they are only capable of withstanding depths up to 2000 feet before imploding due to pressure.[14] The chambered nautilus inhabits different segments of the shell as it grows, continuously growing new, larger "cells" into which it moves its internal organs as it grows in maturity.[14] All of the smaller chambers, once uninhabited, are used in the method described above to regulate depth.](https://substackcdn.com/image/fetch/$s_!Hopt!,f_auto,q_auto:good,fl_progressive:steep/https%3A%2F%2Fsubstack-post-media.s3.amazonaws.com%2Fpublic%2Fimages%2F340fb000-4b4f-4caa-ad84-4556fb2dd558_1258x2048.jpeg "Shell function The shell of the chambered nautilus fulfills the function of buoyancy, which allows the nautilus to dive or ascend at will, by controlling the density and volume of the liquid within its shell chambers.[14] This was found during research done in New Caledonia on nautiluses whose shell chamber fluid densities were tested at various depths, weeks apart.[14] Generally speaking, chambered nautiluses inhabit a depth around 1000 feet, although further tests demonstrated that they can, and do, dive deeper.[14] However, there are hazards associated with extreme depth for the nautilus: the shells of chambered nautiluses slowly fill with water at such depths, and they are only capable of withstanding depths up to 2000 feet before imploding due to pressure.[14] The chambered nautilus inhabits different segments of the shell as it grows, continuously growing new, larger \"cells\" into which it moves its internal organs as it grows in maturity.[14] All of the smaller chambers, once uninhabited, are used in the method described above to regulate depth.")
I hope that in writing it all out and publishing it, I will be reborn in some way.
I hope that I will not implode due to pressure.
August 2024:
My health the last few weeks took such a turn for the worse, but it finally led to answers.
I was not really fully here. I had turned gray. Bright and I watched the color come back into my skin in real time yesterday. Cried. My skin had not looked like the skin of a living person for a few weeks, long enough to get used to it and forget, until the color came back. My own personal Pleasantville.
This is the home stretch. Just a few more tests, a few more appointments, and then I get to do a treatment that should knock it out. If I do the right things, it won’t come back.
What is it? What the fuck? After four and a half years of asking, now I know. Sort of.
My immune system has been attacking brain, spine and nerves, just deteriorating everything. Slowly taking away my ability to move, see, hear, think, breathe. That’s what I’ve been fighting. That’s what I’ve been fighting and winning. That’s what the other doctors didn’t know, didn’t know was possible, didn’t know to look for, didn’t know how to test for, didn’t know how to treat. That… was my “anxiety.”
I was telling someone the other day, you know, it’s honestly kind of fun in a way to be on this razor’s edge of death and to have been for years now. For my body to constantly tell me I’m dying, and I say no you’re not. And I don’t.
In the midst of all this, it’s like something has come alive in me that is beyond all this, not in a dissociative way but in an animal way. Respect for the animal of my body. Need for that.
I’ve been watching dance shows hoping mirror neurons and memory inspire me to be able to communicate through movement. I think I love dancing more now than I did when I could actually do it.
The other day I had one of the best conversations, and I’m a fucking great conversationalist, I have great conversations every day, but this one. Now I just don’t… have anything to say that I haven’t said.
I had this dream recently there was a rabbit in a chair next to my bed, an old, wise rabbit talking to me and he said “you’re finally here.” I was telling him about my wrecked body, almost apologetically, and I felt like… I just kept saying “Oh but that’s life, you know, the paradox of life.” I was making light of it. “Yeah I’ve been extremely sick for years, but it makes things interesting. Haha.” And this rabbit person was not accepting my performative shit, but I couldn’t just drop the mask, I couldn’t just admit how scared and tired I’ve been, because NO, I am strong, I have a great attitude, I have to, I have to keep positive, I don’t care if it’s performative, I will wax humorous & philosophical about it and I will be an animal in private. I won’t even be an animal around another animal.
But this conversation the other day, it was one of the most dire health days I’ve had so far, my air conditioner had been broken for days and it was 90 something degrees in my house, I had just had a steroid shot that was jacking me up beyond belief and the ER and neurologist had me on a cocktail of muscle relaxers and migraine medicines and I was loopy, I was feral, I was greenish-gray, it was so awful, but I had this conversation and it touched something in me. I came back hours later crying snot shaking and saying I’m tired, I’m so tired. I can keep going but I’m so tired. I can keep going! Okay? But I’m so tired. But I can keep going.
I don’t know. Something about admitting that it’s like it shot a hole through me. Now I just don’t. I’m just tired.
Anyway, I just need to keep going until I can do my apheresis treatment where they Take The Blood Out Of My Body and Wash It and Put It Back In like Keith Richards, and it’s fine, I will survive I have answers, it’s almost over. Almost over. But that conversation. I keep coming back to it and I’m angry at myself about it and I don’t know why. I kept deactivating and reactivating flickering in and out online like I was irl. I am no longer tired of my health problems, I am tired of not having more conversations like that. I don’t know what that was and I’m upset, I’m angry, I can’t, I don’t know. I am embarrassed and ashamed somehow.
Today I had 2 huge seizures. I’m drinking tea on my balcony, enjoying the big cooling off outside. There are people in my life who want to see me thrive and do well, and it hits extra hard because my life isn’t sucking because of me, it’s not me just flailing and wallowing or anything like that. Hasn’t been. Not for many years.
I so wish it was something I was doing wrong. I so wish it was my responsibility in the sense that I could just make some decisions and fix it, even if it would be hard work, it’s that kind of work you do when you empower yourself to do it you know. When you remember you can choose.
So, a lot of what im dealing with is a feeling of powerlessness when it comes to my body, my time, my energy, my vitality, but the way most people treat me is that i am somehow strong and powerful, that i have a presence and a meaning to them that is catalytic and unique and necessary. That’s cool, I’ll take that. We take those.
But there’s something about feeling betrayed by a function of biology that is beyond the self-betrayals of young adulthood when you are seeking to form a true identity and secure a sense of belonging in this world. Glad I did that when I had the chance, because had I not I would really be fucked. But I don’t know, you know, I learned not to base my identity on others, and now it’s others who are holding me together and reminding me of who I am.
It’s good. It’s good, it’s just a kind of vulnerability that is somehow incredibly difficult.
I’ve been feeling all these things like shame and disgust and feeling trapped, like when I got my MRIs the other day and they put me in a big clanking spinning magnet with a cage around my head, I RELAXED, because the outside finally matched my inside. They asked me what music? and I said how about Nine Inch Nails, but they didn’t play the music for the first thirty minutes, which was fine because to be quite frank... the MRI machine sounds just like Nine Inch Nails.
I’ve still been watching the dance shows, fantasizing about dancing again but looking at it differently. There was this girl who combined Chinese folk dancing with these two other styles, bone breaking and wave… and I thought “Yes, that’s it that’s how I would move. That’s how I would get the outside to match the inside, this beautiful, graceful, broken contortion.”
God. Fuck. And what is this thing about the outside matching the inside? As if I have this permeability now that I need the outside to match the inside, so that whatever osmosis occurs isn’t disruptive, and it makes me think about how. About how there are these little particles floating in my own body, that my own body made of its own intelligence, that are killing and eating my brain and nerves and spinal cord which are also my own body. Soon they will no longer be there, and soon maybe permeability won’t be a problem.
I really do believe that I have wonderful graceful beautiful broken things to do and make and I need that, every time shit happens I hold on for dear life in ways unfathomable to many, maybe to most, and it has clarified me and it has invigorated me and it has made me… it has made me a Fucking Force of Nature! As if I wasn’t before!
I do see who I am and what I do… trust me, I viscerally know the effect I have, even when I can be intense, even when people question it. I Know What I Am Doing OK. I know what I am doing and it’s totally okay to be misunderstood, I understand. I understand.
My body… it’s like my body can’t hold it all. It’s learning how to. I am not confused or bewildered, truly. I also see the writing on the wall in the world, I see what has transpired and I know what a gift it is to be alive here in this place and time. I know what a gift I can be. And I know I am sane. And I know I am capable... there were times when I wasn’t.
But I am trying so hard to hang onto that while my body goes through this, and it’s gotten so hard that other people are having to hang onto me and I hate and love that equally. I’ve been scrolling around online and I’ve been just horrified in some way, a way I used to have a wall up against, or I used to tell myself “but look at all these people I know doing cool amazing things out here and it’s fine everything is going to be fine.” Yes, it will, but somehow right now there is a horror to it, and it’s one I felt all along. There is a true and visceral horror to it, like when you’re fucked up around the wrong people or something. Like when you go to a third world country and see certain things that are normal there that would kill everyone you know if they saw it.
And the beauty is mixed in with it, of course, I’ve always seen that. Now I see horror because I am horror… I have become horror… I know it so well now, and it’s what we all saw when we were kids looking at the TV or at how others treated each other, but now it’s magnified.
And I’m so sorry that sometimes the beauty isn’t enough. I am very sorry that the beauty isn’t enough.
But I think if I can become this horror, out of my control, against my will, and if I can move through it broken and graceful and with some help, I think if I can come out on the other side of this… and I will. I think, wow what am I going to be able to do… broken, and graceful, and with some help.