“love is a dying”, my second album, is out now 🦋
this is a simple, raw collection of songs from 2022 that reflect on love and loss. I wanted to let myself make something decidedly lofi and barren, because I think that’s what these songs wanted to be. I intentionally didn’t dwell on them for too long, and the writing/recording process was very much interwoven with my own emotional timelines. I can’t promise any bells and whistles on this one, but I can promise that each take I chose was the one where I felt the most connection and presence with the music. and often that resisted waiting for a better time, place, or process to record a song than the moments I was sprawled out on the living room floor, trying to open myself and my heart to the unglamorous labor pains of transformation. I think seeing the music as a way of presence over a skill is what felt healing for this stretch of time. I wanted to abide by that thread, as an experiment. I hope these songs make you feel a similar permission to be open to presence with yourself <3
out on @whitedsepulchrerecords
written, recorded, and produced by me at my apartment
mastered by Sean McCann
album art by me and an mri machine
My first album is out today. This morning I sat under a tree in the park and wept for a great deal of time. I realized that if you wear sunglasses while you’re crying you can cry as much as you want! This made me laugh, and then I spent the next half hour not knowing if I was laughing or crying.
Before this, I woke up numb and squirmy, preparing to spend the day shrugging off any words from others and writhing against my mistakes (should have used a metronome here, forgot to crop the album art into an exact SQUARE omg). I get squirmy when I’m supposed to be celebrating. I never feel quite worthy. I think it’s because joy demands me to receive a grace from outside of myself that I’d feel more secure about if I could manufacture it on my own.
As I fulfilled my role as the Most Insane Person in the Park of the Day, I realized the absurdity of my angst. The way this album has weaved through my life in the last 5 years has been as a quiet whisper to surrender. To be fed up with my own striving to be legitimate. To be rid of the heavy burden of thinking any of my life is about me.
Making an album has been one of my few dreams in life. As it approached me as an actual possibility and then reality, I shuddered in fear. And noticing this fear taught me a lot about the abundance that I reject in serving fear instead of love.
I want to feel connected again to the love that delivered me from these dark places into the rebellious joy of saying yes. Yes to love, yes to pain, yes to being, yes to life. And that yes can not coincide with my own sense of control. It must burn my will. I must collaborate with the spirit of grace, a spirit I associate with God.
I hope we all feel the ability to shrug off the need to be good and to receive the gift of just being. Please finish your album that will have so many tender mistakes! Make your art and love it for what it is! Behold whatever you make as the cosmic egoless gift it wants to be for everyone! It’s all absurdity! You can toil for years on something and still find all of these flaws! It sounds like such a drag but it is really our greatest freedom! We do not have to be good! Love is all! What a grace.
(The same text is also in caption below):
For those who may not have seen my story, I am sad to announce I will not be able to play tomorrow’s show at DSGN Clltv. Matchess and Planchette will be playing, which will be awesome. I will be there in the audience to watch.
Cancelling this show feels both like and unlike previous times I’ve had to nod out from live shows due to my illness over the years. It is similar because I feel immense weight in having to cancel something I prize being reliable and dedicated to. It feels not similar in the way that my abilities have significantly declined. The act of preparing for this show showed just how much this progression had occurred. In everyday life, the constant changes feel like subtle attacks on the days, but put into a wider arc, it is alarming and hard to believe.
The last time I played (10 months ago) was difficult physically for many reasons that were hard to articulate. It had been like this for many years. Now, it is much more obvious. I just can’t play guitar anymore. I didn’t even attempt to play harp (which I assume would be harder due to the control it takes to hold arms out despite gravity). The nerves throughout my body, but especially in my arms and hands, are transiently weak, spastic, twitchy, and unreliable. This wasn’t as obviously the case when I said yes to the show a few months ago, let alone even a few weeks ago.
The decline I’ve experienced is a bit surreal—slowly, seeping its way into many new parts of me. However I am extremely happy that my neurosurgery for my spinal cord is less than a month away.
My rare spinal cord diseases (I most likely have 2 that could be related to one another) are hard to understand because of the nature of them. (I will be speaking from my lay patient view here). While many spinal cord conditions involve myelin degeneration or a sharp blunt force injury, my mechanism of spinal cord injury seems different. Syringomyelia, which I have a mild form of, has to do with spinal fluid dynamics. I am not totally sure if this is causing my symptoms, and at the moment this does not in and of itself need treated (but will need to be monitored).
(cont in comments below)
life updates!!!
- ryan and i went to the olive garden yesterday in richmond. we recommend the $6 take home meals, which make dining here an economical and affordable option for you and your family
- i am turning 30 next month!!! i’ve been excited to turn 30 for many years! it has come to my attention that each new middle aged woman I meet thinks I am a teenager. i would like to clarify that i am an adult just in case no one knew this whole time
- i am playing a show on june 9 at @dsgn_cllctv with @matchesse and @planchette_sound . i think i have decided to play only unreleased material for this show. this will be my only show this summer and probably this year as i am
- getting spinal cord surgery. sounds scary, but it is good news! my neurosurgeon thinks i have occult tethered cord and so do i. he is gonna resection my filum terminale!!
- i just began graduate school. yes, again. i am studying for a master’s in philosophy with a concentration in bioethics at indiana university indianapolis. i decided to leave my previous grad program because of my health issues a few years ago and that is ok. school continues to beckon
- i have been having an absolute great time participating in @hearusyarr which is a rare disease advocacy group. it has meant a lot to transform the experience of rare/undiagnosed disease towards advocacy!!
- i have been very obsessed with the “poetic web” and making imperfect websites just for the fun of experimentation and expression. i am thinking about what it might mean to make websites that feel like homes, while social media plays more of a peripheral role. websites are alive and powerful!!!! i made a new main website and am working on some other websites. please don’t look at them on your phone bc they are only optimized for computer! the domains i am currently updating include:
baileycmiller.com (og domain)
absurdity.today (spicy lil treat)
recover.rest (coming soon???)
- this rediscovery was inspired by @sfpc_nyc which i am currently also a student of - fun internet stuff!!
- i also have been pretty active on are.na if any of ya’ll use that. my username is bailey-miller. i like cataloging a lot of websites i like on there
thx (:
spines are so beautiful!!! and look at how the right side of this x-ray looks like shadows from filtered light coming through trees. i’ll save ya’ll from the version where you can clearly see a needle going between my vertebrae like i was a maple being tapped lol (it wasn’t that bad!!)
in 2023 I went to 47 medical appointments
for 2024, there are 2 down, 11+ on the books
I have had so many tests recently! what do I even say lol
what is immediately story-able? what remains gummed up in the throat until someone hands you the answer?
mris, ultrasounds, x-rays, surgery, endoscopy, labs, modified barium swallow study
I was going to get a lumbar puncture and CT myelogram but insurance denied it 24 hours before...cute
and soon: a urodynamics study! (the urologist was like...this one’s...weird...you know that right?)
cool highlight: found out I have a syrinx (a benign cyst) in my spinal cord spanning C4-T1 (it is thin and requires no immediate action but is rare)
this is interesting paired with the fact that I have left scoliosis (left only occurs in 10% of scoliosis cases and often has neurological involvement)
on top of these things, my spine has a multitude of “milds” — things that are common in aging and may be incidental findings on my imaging, but nonetheless make me feel baffling — bone marrow abnormalities, reversal of the curve in my neck, a disc bulge, dehydrated discs, a bone spur, possibly only 11 rib pairs instead of 12 (even neurosurgeons can’t tell me for sure? I’m supposed to put my trust in doctors who can’t even tell me how many ribs I have?), stenosis, arthrosis, facet arthropathy, facet hypertrophy, abnormal reflexes…
and these are only the ”objective” findings, not to mention the symptoms that take several printer pages to list
so what could be causing this neuromuskuloskeletal conucopia?
we still don’t know (:
but we have a likely possible lead:
“occult tethered cord”!
it’s when you’re spinal cord is attached to something somewhere on your back, often a benign lump
often they find this when you’re born or a kid
but some don’t find it til adulthood
it could be of the “occult” variety not because I’m in a cult, but because it isn’t obvi on my MRI
so we’re gonna do one more test and then talk about if I might be a candidate for surgery
where they untether your spinal cord from the junk it’s stuck to so it can move freely and stop being stretched…wild!
if this is it, it could tie together so many issues!
hoping for an answer
