There's a lot of information people should share with each other, but they do not for various reasons.  There are many reasons why someone would do that.  Some reasons that come to mind off the top of my head are: that person doesn't feel comfortable sharing those details due to past trauma and negative experiences, or maybe they are still not done processing all the information surrounding the issue, or maybe that person is very deeply anxious/sick/overwhelmed and can't even understand what is going on to begin with.  Anyone who experiences constant overwhelm will try not to cause others the same.  If a friend has too much going on in their life, it would be wrong to overwhelm them further with details about your own struggles at that time.  During hard times when everything is overwhelming for everybody, this does create a problem.  When things go unspoken for too long, when unanswered questions remain just that, when nobody has the relevant information necessary to move forward, lots of conflict and miscommunications arise.  Sometimes I wish we could normalize, as a society, asking someone before speaking: "Hey, do you have the capacity for this?" I wish I could remember to do that myself, but I often can't. Because there is a lot going on: in daily life, in our own bodies, and in the world.  Some people can keep up with that and others cannot, but I would bet that everyone struggles with this often.

I met someone a while back who shared an important detail about themselves as they introduced themselves to a group.  They said: "Hey, my name is {insert name}, my pronouns are they/them, and just to let the group know - I am autistic."  It kinda blew my mind at the time because I was thinking WHOA I didn't know we're ALLOWED to do that! But that was really helpful context to know about this person when proceeding to communicate with them, especially since we were meeting for the first time.

This made me wonder, what is something that completely rules over my life and has a deep impact on all aspects of it.  What is the most relevant detail I would need a new person in my life to know, assuming I had to pick just one - the one that was deeply important for anyone around me to know.  I would likely say: "Hi, my name is Alex. My pronouns are she/her but I don't really care what you call me.  I am a type1 diabetic of 12 years who is also neurodivergent."  That already sounds like a mouthful and like it would cause someone else overwhelm or information overload.  I can see why we don't normalize that as a society (but that doesn't change my wishes).

When I first got diagnosed, I had some friends who approached me insisting that I meet their diabetic friends.  They said it would be helpful, supportive, and informative for me.  Sometimes it was, but sometimes it wasn't.  A lot of T1 diabetics I have met were neurotypical.  After 12 years with this disease, I see how that distinction is important.  It means we do have the same disease, but our experiences of it are very different.  

T1D is a disease that requires round-the-clock monitoring, including when you are sleeping.  It requires a lot of meticulousness regarding health routines, eating schedules and diets, exercise, mental health management, supply management, routine doctor appointments, constant health insurance wrangling, and also constant information being presented to you.  Often this information is new and complex.  Sometimes this new information contradicts past information which requires a lot of brain processing, further research, and personal discernment.  For example: my endocrinologist (diabetic doctor) told me at one appointment that she will put me a different brand of fast-acting insulin so that I didn't have to wait 20 minutes before eating after injecting myself for a meal.  But this didn't help me out, and months later, another endocrinologist told me that the information she gave me was incorrect.  I still had to wait those 20 minutes.  That was very confusing for me, but it happens a lot with this disease.

One question I like to ask other T1D'ers is: Do you ever forget about your diabetes? Some people find that question ridiculous, some people reply with "sometimes I do, sometimes I don't", others reply with "JFC I DO THAT ALL THE TIME WHY IS IT SO STRESSFUL".  Out of all those people, the last one is the one I relate to the most, and would feel most comfortable sharing with because I know our experiences of this disease are more similar than not.

I am a low-capacity person with a very slow brain processing speed.  It takes me a while to take in lots of information and make sense of it.  I like to spend time alone a lot and its probably also why I enjoy writing so much.  It truly helps me to process complex ideas, loads of constant new information, and keep track of things I shouldn't forget (but likely would, if I hadn't written it down or kept a record of it in some way).  I understand not everyone is like this.  I notice a lot of people around me are able to move much faster.  They can have multiple social interactions in one day, while holding down a full time job, and managing a wide array of constant responsibilities while also processing a lot of complex, new information every day.  I wish I could do all of that, but I know I don't have the capacity to do all of that while I’m still maintaining my body and mind, which is why I don't engage with the same lifestyles or life goals as they do.  It does bum me out sometimes - like when I see old friends meeting all the classic milestones of life such as having a career, starting a family, or owning a home.  I do wish I could do all that, but I know I simply can't keep up with that, so I abstain from it.

When I am overstimulated, stressed out, confused, or anxious, I cannot keep up with my diabetes.  I forget all the tasks at hand.  I will reach for a piece of food and just eat it.  But here is why a constant state of overwhelm is dangerous for a person with T1D.  We really do have to eat "differently" among many other things (including stress management).  These requirements also vary depending on what devices you are using for diabetic management, what your material resources are, how you go about your day, ETC.  For example: I need to eat 3 meals each day, spaced out by about 5 hours.  Before eating or drinking something with carbs, I first have to check my blood sugar level (I currently use a CGM for that, but my back up is a finger-prick based glucose meter).  Then, I have to decide what and how much I am going to eat.  You can't eat less or more than what you decide.  That is because, based on your blood sugar level at that time and the carb count of your meal, you have to then calculate an appropriate dose of insulin to inject yourself with.  Then, you inject your fast acting insulin (not to be confused with long acting insulin which you take once a day in addition to that).  Then, you wait 20 minutes.  Then you can eat.  But you can't eat less than what you counted for (because you will then have too much insulin in your blood and will get a low blood sugar) and you can't eat more than what you counted for (because then you will get a high blood sugar).  When I am calm, at ease, and thinking logically and rationally - yes, I can absolutely do all of that and in the correct order.  But when I am not, which can be a constant state spanning long periods of time, I absolutely cannot process nor execute all of those tasks, three times a day, every day.  I feel like I can’t follow this regimen on ANY day- it overwhelms me too much. This is why its easier to be alone most of the time.  Its probably why I love my job being a dogwalker - I can keep my own schedule, go at my own pace, and meet my needs as they arise.  It doesn't require too many awkward social interactions - dogs are pretty straight forward.  I know what tasks need to be completed and for how long, etc.  The simplicity of the job suits me, and I do require that simplicity to complete all my other daily tasks.  I've had family members criticize me for being a dog walker, saying I wasn't realizing my full potential or that I had low self-worth and that's why I didn't go after more "challenging" jobs.  I just have to ignore that kind of stuff now, because I know what my needs are in that realm (job world) and I am simply trying to accommodate them in my daily life.  That is a necessity when part of my daily life is being constantly overwhelmed by my body and brain - just existing on a very basic level is a lot of work already to me.  Again, for some people, that is not too much work.  But my slow-paced and very LOUD brain coupled with my demanding physical body makes it too much work for me.

I know one helpful action item would be to get back on an insulin pump, because it changes the rules a tiny bit.  For example, the reason I have to only stick to three meals a day spaced out by 5 hours is to prevent insulin stacking.  You have to make sure one dose of insulin has run it's course through your blood before you add another in there.  If you don't, you run the risk of hypoglycemia (low blood sugar event).  I've interacted with people who aren't diabetic who have said "Oh yea, I get low blood sugar all the time!".  I'm sure they do, but these events are not the same.  Feeling faint because you haven't eaten is one thing.  Feeling faint and passing out because you injected yourself with too much insulin is a whole different monster.  It made me crash my car one time, and that event really sucked! It also broke my heart, because a stranger approached me in the car to make sure I was ok.  I tried to communicate to them that I was having a low blood sugar and needed glucose immediately.  But I could not communicate this to them because of the severe low.  They assumed I was fucked up on drugs or alcohol, dismissed me, and walked away.  I still don't think I'm done processing that event, nor others like it, because those take a long time for slowLOUD brain.  When you have an insulin pump - you are tethered to a continuous, steady stream of insulin.  This means the 5 hour rule for meal spacing doesn't apply.  It also means the 20 minute rule before eating doesn't apply.  You get to be just a little closer to a "normal" human than not.  

I've been on a pump before, so why am I not now?  Because of ALL THE OVERWHELMING reasons in slowLOUD brain.  I bet if brain didn't get in the way, I could probably manage life with two medical devices better.  But I am already overwhelmed by the constant data emitted from my CGM (blood glucose monitoring device).  This was a conversation I had to have with my endocrinologist.  One reason why doctors are reluctant to prescribe a patient a CGM is because they worry about "information overload".  That is why they are cautious about pushing devices on people who present as anxiously as myself.  When I was on an insulin pump, I struggled with it.  It was constantly beeping at me with its needs, just the same as my CGM does.  You had to change it every 3 days.  You had to keep back up supplies on you at all times, in case it failed, which is a scary event.  One time when I was on the pump, I went to a friend's bachelorette party in the middle of the woods.  I didn't know it at first, but my pump had a kink in it.  So it appeared to be working, I kept telling it to inject me with insulin, but my blood sugars just kept skyrocketing quickly.  I started vomitting and exhibiting signs of entering DKA, a complication that leads to coma and death.  This whole event was scarier, because I was at an overnight party and far away from home, and I also didn't want to ruin the nice time by telling everyone what was going on with me.  I decided that even though the pump appeared to be working, it clearly wasn't.  When I finally took it off, I saw the needle was bent.  So yes, the insulin was coming out, but it wasn't entering my blood because of the bent cannula.  Luckily, I had a spare, and replaced it.  But I was still very sick the rest of the night and the next day and it took a long time to get my blood sugars back to a safe level.  The reason you can enter DKA so quickly on a pump but not on manual pen injections is because when you take pen injections, you take a secondary insulin, called long-acting insulin.  When you're on a pump, you only take rapid acting insulin, because you are constantly tethered to it.  Maybe some people are OK with the precarity of that trade off, but I don't think I am.  That is too much anxiety for slowLOUD brain to hold.  There are other reasons too - I don't like a large, heavy devices hanging off my body - it feels weird and distracting and uncomfortable.  It gets caught on stuff constantly.  My health insurance sucks - so I can't guarantee that my back-ups will have back-ups when technology inevitably fails.  All of that is too much precarity for me.  Since I know having two medical devices to keep track of overwhelms me like that - I decide to just stick with my CGM, which is already a constant pain in the ass to acquire and its own monster to do a daily battle with.

I think the TLDR version of this entire post would be: OVERWHELM IS REAL.

I have so much more to say about this, I'm sure every diabetic would.  I will maybe make a series of "diabetic rant" posts, because it really is too much for brain to hold and it is something that I wish nondiabetics were more aware of.

It's Wednesday, December 11, 2024.  It's 5:47pm, not too cold, very dark, and very rainy.  Im sitting up in my loft bed and my cat snoozes to my right.  I have the window cracked open a little and can hear the rain fall, heavy gusts of wind passing by and all the trees they cause to sway, as well as numerous cars and sirens continuously driving by.

I've been feeling pretty awful lately, in every sense of the word, so my inner doctor is scrambling to find a tested and true remedy.  

"What ails you, today?" asks inner doctor.

"Insurmountable hopelessness," I inform them.  "The terrifying sensation that where you are now is a place where you are "stuck" and will never be "unstuck" from again.  And these are just two of the main layers on one of those fabulous Carvel ice cream cakes.  Let's not forget that rocky center that divides the two ice cream flavors, in this case: everything you could possibly fit into the self-loathing suitcase.  Also the delicious icing on top: a loneliness beyond belief, accented with that red or blue, sugary gel to spell out every horrible misunderstanding you ever did have."  I am locked in direct eye contact with inner doctor this whole time.

Inner doctor checks their notes and compares it against my chart.  Their eyes scan all the available data in a most clinical way.  They reach for a device - it looks very sanitized, very stainless-steel, very durable and reliable for something that seemingly gets used every single day, several times a day, without fail.

There's a switch and a knob.  They flick the switch on and turn the knob until the box receives as clear a picture of a sound as its sterility can muster. 

It's literally just a radio.

So I'm filling my prescription right now and administering my meds.  I am thinking of songs that I had created with others in some capacity throughout my life.  Some are from random jams with friends or lovers, some are band recordings we worked hard on while others not very hard at all, some were just a quick, nearly-forgotten blip from a band rehearsal.  They are all of varying sound qualities, but for me, they are ones that I continue to revisit in my head often because they are songs I could never possibly forget. 

[an incredibly loud thunder just pierced through mine and my cat's reality just now]

This song was written either in 2001 or 2002 by my punk band in high school. We were called Johnny Panic and we liked to shit on other people a lot lol so this was our song making fun of "typical punks".  It's called TPS ("typical punk song") and I think we "released" it on a CD of our demos that we sold at our high school's battle of the bands one year (we didn't win the battle btw). We had another song making fun of straight-edge kids too {insert eyeroll-emoji}.  I no longer have contact with the other two bandmates but damn do I wish I did because this shit was golden.

This track is from a jam session in my basement when I lived in South Philly. This was either sometime in 2011 or 2012. I was messing around on guitar with my partner-at-the-time's Vox amp and multi-effect pedal. One of the effects on the pedal allowed the expression pedal to pitch-shift and I was OBSESSED with the raging SQUEAL of it all. Sunny (my partner at the time) played drums during it so expressively, that we had to revisit this piece of sound. He later recorded some vocals over it, which is what you can hear on this track, and then years later turned it into a fleshed out song with his band.
But that day, I distinctly remember my housemate Sally coming home from work saying: "DUDE yall NEED to turn it down. I could hear that shit down by Pat's & Geno's!" (which was bout two blocks away lol)  Many times in life I went searching for that guitar sound but I could never find it or recreate it again.  I'm pretty sure it only lives in that one concrete-walled basement at the bottom of that one South Philly rowhome during that one specific moment in time, only at that one excessively loud & intolerable VOLUME, and never to be heard from again.  Bless Sunny for having the foresight to record and save that jam.

This song was part of a set of demos released in 2012 on bandcamp by a garage-punk band I played drums in when I lived in Philly. I had literally just moved down there and didn't know anyone other than my housemates, had just picked up the drums and barely knew how to play, and answered the first craigslist post I saw that was seeking a garagepunk drummer. My bandmate who wrote the songs - this human was completely unhinged. But I do wonder maybe that's why I always loved his songs so much? I don't think he ever came to practice with a new song that I disliked. Have you ever played in a band where you literally thought every single song was a banger? Me neither (at least never before or after this band). I remember at the time trying to really zero-in on the laid-back vibe I experienced everywhere in Philly, especially among ppl born & raised there, which was in direct contrast with all the other environments I had inhabited up to that point. I wanted the drums to be slightly sloppy, slightly delayed, kinda off but always finding their way back. I mourn this lost project more than any other even though it absolutely had to die. Tho I am grateful to it for at least teaching me how to play drums and the sheer joy it provided me at some special times.

Right before the pandemic hit, I started a new band with some friends.  It was beautiful because there were absolutely *no men* present and we would spend entire Saturdays just lounging around my basement chatting, joking, and playing music that had no pre-described rules or regulations.  I think the spontaneity of it all is what made it feel so healing, so naturally collaborative, and so cathartic.  We only ever played one show and it was only because we knew we were disbanding.  This was now a year into the pandemic and people were moving away and stuff.  I guess it was our little 'last hurrah' to honor what was probably most treasured about that project: the magical band practices we spent so much time in.  It's impossible to pick just one song from our few recordings (one of my favs we never even recorded properly!  I think it was called "Miss December").  Everyone should absolutely listen to everything off of "Dislocated", but I am direct-linking to one of our first songs: "Cat Call".  I love this song a lot because, having grown up playing music being a girl, I've heard ALL the takes on that subject (and am annoyed at ALL of them, I assure you, mainly because I don't understand why the situation even warrants 'a take' at all anymore).  I love how in this song, we make an obvious gimmick and run with it: putting that cat-call whistle on repeat and just playing the song over it until we drown it out completely.  (These were all spur-of-the-moment decisions and this recording is just sliced out of a regular band practice recording).  I'm sure girl bands have done these "gimmicks" since the beginning of time lol, but this one hits different to me.  Because suddenly Steph Stroud comes in with those combative drums.  Hearing them always makes me feel like an assault is def about to happen - but *not* the one you think!  Then Amber's bass line creeps in - like footsteps that were already following you, but just came into your awareness.  Then my guitar part comes in, which I truly tried to make sound as sleazy and slimey as all the men that Sherell so vividly describes in her vocals throughout the song.  The authoritative voice takes the place of the men - “Why u got those BODY PARTS?? ON MY SIDEWALK??” She yells, exuding the entitlement a man who would cat call a woman on the street probly feels when he engages in invasive/aggressive behavior like that. Her vocal delivery alone turns all the tables.  As far as bandmates go, I miss this chemistry more than any other still.

A year ago, I had a little song-writing retreat in my basement with a good friend.  There were no expectations other than that we were probably gonna come up with a song.  It was based off of a voice memo I found on my phone of this same friend playing their accordion so sweetly, a melody so absolutely touching that it would make me cry.  They added lyrics and we added instrumentation.  I vocalized their lyrics to the best of my ability and we took our demo to a friend for "proper recording".  One of my favorite songs of all time, no lie.

Last December, my sweetie and I went into the basement music room one night to mess around and he started playing this very simple and effective bass line which caused me to think about the longevity of fallible structures around us. So I later wrote/recorded this demo based off his bass line. I eventually hit a wall when it came to coming up with a chorus, so I asked my sweetie for input since he was the source of the inspiration.  He said very randomly, off the top of his head: "what if someone was just repeating the line: 'who's driving?' "   I loved the idea so much that I recorded that for the chorus, which lead to a whole tangential, borderline-spoken word-type chorus that still sounds like *such* an "anti-chorus" to me if anything.  None of this would exist without my blessed sweetie and their boundless creativity. The kind that is so unassuming it’s legitimately SEXY to me lol. Like when Jim Carroll describes playing a game of basketball with the graceful, effortless movement of a cheetah in The Basketball Diaries.

Do you ever hear a question that is *totally valid* but strikes you as ABSOLUTELY WILD ? (that meme about someone asking "do you ski?" comes to mind lmao, which is def on par in STRANGENESS to me but not what im talking about right now)

When people ask me "how do you write a song?"

idk how you're supposed to answer that because I have no idea what other people do, all i know is what i do

and what i do is just kinda open my heart to all possibilities (a practice similar to when i walk into a giant thrift store; maybe the purpose here is not that YOU find a thing you're looking for; it's more like you being OPEN to ANYTHING else finding YOU), listening/perceiving carefully to anything seen/heard/felt that is based in organic authenticity, and NOT PASSING JUDGMENT, only expressing pure acceptance and maybe even devotion to the thing that hath found you.

But most importantly, you should then try to jot it down/voice memo record/document *as fast as possible* because for me, it works similar to dreams.  As soon as u even try to remember them in detail - they're GONE.

It’s 8:06pm on November 11, 2024. I’m writing this out on my phone in bed, which is where I’ve spent most of the past week due to my body being a garbage bag (again.. and again and again)
I started pondering this meme I saw recently which really hit a nail for me:

After election results were announced earlier last week - I had several weird interactions with ppl in my surroundings. But to be honest- these weird interactions were an extension of the past year’s weird interactions with everyone, and by another extension - the whole pandemic. One client at work said: “wow did u hear? So shocking” to which I could only say “you didn’t see this coming at least for the past year??” She said no and it made me so sad I felt it in my bones. One person even messaged a loved one, someone who has always been outspoken in their criticisms of american government/politics, accusing them of putting black & brown folks and queer & trans folks on the chopping block for criticizing Harris as a candidate. Quick reminder that of course trump, but also neither Biden nor Harris have ever cared for these lives. But I guess some people are too distracted by colors such as red or blue to investigate who they are truly voting for because for them, politics seems to happen once every four years (???)
I’ve seen a lot of persecution of the left- blaming them for another trump term. Maybe if the cognitive dissonance here wasn’t so tragic, I would laugh at the absurdity of their comments. But it’s not funny. And it wasn’t the past year either. Nor since the pandemic started. Nor since the birth of this ugly “country”. Why would you blame the very ppl who were pointing out the problems you actively chose to ignore? I am now wondering how I would explain all this to one of these people in terms they could understand without myself sounding accusatory or ignorant (the way they sound to me).  Also, this point is not in any way glorifying or making a monolith of leftists - I critique us too.  I have problems with many (mainly wondering why most of them don’t believe in masking anymore ???)
You should always criticize the government under which you live. It’s (supposedly) your right, but more importantly your DUTY. How else do you call out human rights violations? While I’m at it- u should always Question Everything. This will always do you good. It’s a good muscle to exercise. Anytime there is a hierarchy involved - I don’t care where you are in the hierarchy, but ESPECIALLY if you’re at the bottom of it - you should critique and criticize what you see, hear, feel and most importantly- what you experience in your daily life.
Last fall, I remember a couple old friends came over for dinner. We discussed the genocide in Palestine and it quickly erupted into a screaming match. One of the friends claimed that fighting back against your oppressors in any militant manner is wrong. That war and guns and death are always wrong. My loved one retorted with- if everyone YOU loved was being massacred and everything YOU ever knew was being destroyed- would you not eventually pick up a gun? Someone who has never had their life threatened by an authority will likely see that as extreme - because it doesn’t relate to their experience of life. But that doesnt mean that all the ppl who do experience this (on a daily basis) aren’t valid and don’t deserve a human life just as much as you do. You’re just occupying a different space in the hierarchy.
I’m thinking of all the ppl in america who felt they didn’t need to know what was going on in other parts of the world (even at the hands of their own government) because it “wasn’t their problem” and “none of their business”. For context- I also hate politics. Always have. I much rather go play music with my friends & watch a dumb VHS movie than debate the lives and morals of a bunch of rich candidates that I will never know personally and who absolutely have proven to me that they could not care less if I live or die. Like most other ppl- I have better ideas of what I want to do with my time here. The reason everyone needs to be political, however, is because it affects all of us. In a conversation with my dad recently, he asked me “when did you get interested in politics?” I couldn’t help laughing, because the word “interested” implies that I had some kind of choice. I told him I was forced to, against my will, when I became disabled in america. Politics is everyday- but ppl of privilege usually don’t find that out until it’s too late. They don’t mind tho- they can likely still purchase their own safety when shit hits the fan…
Which leads me to ponder the aggressive individualism in this country. Some lives are obviously valued more than others here. I hear liberal, privileged friends say : “go vote for the lesser of two evils”. But isn’t everything relative to your experiences? So my question is: Would YOU go vote for someone who was actively trying to kill you and your loved ones? Probly not! Basic survival skills tell us not to. That’s y I would never vote for trump. But it’s also why I could never vote for a dem again either. My point is- the other rich person won because anyone with a conscience literally didn’t have a candidate to vote for. There was no opposing candidate, as far as american political strategy dictates. But this is not new or a unique moment in time. And now everyone wants to point fingers. Why are we never pointing them at the two evils tho? Evil is evil no matter how u cut it. Look at what they wrought, continue to do, and will execute in the future. Just because your life wasn’t on the chopping block that day doesn’t mean you shouldn’t care about those people who were, and that your ass isn’t next for the block. You are them and they are you. And nobody’s life is worth more than another’s. This country clearly has never cared about foreign bodies unless they were white. Same is true for how they treat domestic bodies. Is it really shocking that young ppl in this country, raised on the pandemic and the 2020 uprisings, had no faith in a democratic candidate that explicitly stated they support israhell and preferred to continue this empire’s reign of terror domestically and abroad? We all watched how the dems quelled the George Floyd protests by further militarizing the police. After all that, are you really gonna tell those young ppl to go vote for a cop who is intent on building “the most lethal fighting force in the world”? Why is it shocking that a white supremacist won another term in a country founded upon genocide and racism that continues to operate under genocide and racism?
Ignorance kills just as much as apathy & politeness. You could either point your divisive finger, searching for a scapegoat (I’m sure both trump & harris would LOVE that, plus all the other oligarchs they dine with) or u could start having those difficult, uncomfortable but necessary conversations with the humans around you & build unity instead. I know that we are all taught not to have those conversations- but do you ever question why that is? And who benefits from this silence?