disclaimer: I wrote this “essay” couple weeks ago but for the first time on this blog anyways, 
I decided to spend more time on the writing.  I mulled things over, did lots of editing, and even asked for outside help.  I kinda liked this process!  I still love gutteral screaming and vomiting of emotions, don’t get me wrong!  But there is also something to be said about articulation.  

ANYWAYS - it’s Thursday, March 6, 2025, bout 5:37 PM.  It’s raining outside so I can’t drive to the pool because our windshield wipers are still broken lmao.  My cat is curled up by my feet as I sit up in bed posting this!

CRIP TIME

It Monday, February 24, 2025.  I just got home from the pool where I executed my required daily exercise.  However, I had to “cut it short” meaning, I only swam for 45 out of my regular 60 minutes.  I needed to treat a low blood sugar that occurred while swimming and it took a while.

The whole time I was exercising I thought about a friend from high school who recently reached out with an inquiry.  They wanted to know if I had any resources to share about “crip time”.  My first immediate emotion was EXCITEMENT.  Crip time is intuitively perceived by those who experience it and it is a common concept among people who experience chronic illness/disability.  Since they asked for that literature, I couldn’t help but wonder: WHAT DOES YOUR CRIP CLOCK LOOK LIKE, FRIEND??  (It tends to look different for everyone.)

Crip time is a concept that is frequently alluded to in disability justice studies and aims to articulate the point that different people experience time differently depending on what they have going on.  It explores personal, internal, individual experiences of time, as relative to other variables but without a “fixed” measurement.  I feel that pondering the expansiveness of crip time would be helpful for people who aren’t constantly ill in understanding what it’s like to be so.  But its also helpful to reexamining all aspects of modern life and its continually failing/crumbling systems and structures as well as our relationships to them.

This concept was one of those things that I personally felt an affinity to and a relationship with even before I had any “words” to describe it.  Even before I was a “diagnosed” person (with T1D and “schizo stuff”), I was always kinda sickly, for lack of better words.  I had to spend a lot of time sick at home instead of going to the preschool where my mom worked.  I was literally born sick but if you want this story you should likely ask my mother as I was too young at the time to recount much memory of it.  

As a young child and teenager, I remember “time traveling” in my head.  I looked forward to revisiting the worlds that I constructed over nights in my sleep, I loved looking at old photos or notebooks to be reminded of things passed, I LOVED “spacing out” in class as kids do, etc.  However, whenever a teacher would call it “daydreaming” I would get confused.  That space out time to me was more accurately understood (internally) as “time travel”.  As an adult, I’ve tried to do more analysis of this.  My current conclusion is that my individual crip clock is highly related to space (environments- which can be a combination of internal and external “spaces”) and emotions felt within.  But we are constantly measured instead against real “time”.  So I can see where the term ‘time travel’ came for me, but it’s not the full picture.

I haven’t read many sources analyzing “crip time” myself (but wish I did! PLZ send me your fav crip time resources!!!).  Instead, I often observe it in art/music/film/literature/life.  It seems to creep up in my own stuff that I work on, of its own accord.  I am still coming to understand it through my own experience.  This makes sense considering it is an internal, perceived reality.  It exists outside of our “collectively experienced reality”.  However - even when learning about internal perceptions, it is extremely valuable to hear those of others because I suspect it might lead to furthering knowledge and understanding of the collective consciousness.  To investigate this, one could start by looking at art made by disabled artists and note any references to time, clocks, watches, hourglasses, sundials, etc.

Here are some of my perceptions of CRIP TIME as well as insight into my own crip clock, in a completely random order as they pop into my head: 

• The nonlinear/referential storytelling in popular movies like Fight Club (just rewatched that few nights ago, so its on my mind rn).  Through storytelling and editing, the film jumps between different bits of “time” as they are recalled and strung together by our “unreliable”/mentally “unstable” narrator/protagonist.
• The “Disintegration Loops” by William Basinski (a fellow crip friend recommended this to me many years ago as “good tattooing music” and I feel like I understand WHY).  As listeners, we experience the gradual deterioration of the mesmerizing sound loops that Basinski recorded.  As the loops occupy new time/space - they sound different altogether, even though the source material is still the same.  Its the process of “preservation” or, Basinski’s attempt to digitize analog sound and replicate it, that causes the “disintegration” of the sound loops.  So the loops are the same but given the passage of time and transference between spaces, they degrade in sound quality eventually and are never reliably the same again.  It makes me think of a piece of audio as a single human body, slowly decaying over time but always with an inner world/soul in tact.
• Experimental electronic/hardware shows where the musician manipulates sound/speed in a “live setting” as part of their set/approach to audio art, as it is perceived by an audience of listeners based in “real time” (a live music show setting - collectively perceived).
• Working on a new tattoo but employing both techniques of “machine” (time speeds up) and “handpoke” (time slows down), keeping in mind the added variable time fragment of HEALING.  You can’t “overwork” the skin as you tattoo.  Tattooing is essentially, trauma applied to the skin.  If the skin has endured too much trauma in one sitting it needs to heal up before you execute another tattooing session, which then requires more healing time.  Additionally, different bodies take different lengths of time to heal.  The “standard” in tattooing world is 2-3 weeks for a tattoo to heal up.  However, the longer I live with diabetes, I noticed my extremities (hands/arms & legs/feet) take closer to 4+ weeks to heal a tattoo now (variable healing as passage of time/accumulation of trauma to the body).
• Using spray paint (fast time) as well as tiny brush strokes (slow time), among many other processes, on a single canvas “painting” (a defined space/environment).  Different paints take different lengths of time to dry, meaning I either have to wait for one layer to dry before applying another or I use its intermediate “not quite wet but not quite dry” state to apply different techniques with varying results.  Painting in general is highly exhibitive of my crip clock - it allows me to leave my annoying, demanding, and often very painful body for many hours at a time.  This can be a beautiful relief but also a curse since there are no breaks from 24/7 diseases such as T1D.  Any “break” you do end up taking will undoubtedly cost you more precious health (did you check your blood sugars? did you change your CGM? did you call the pharmacy/clinic/insurance monsters again to see if we can still access those this month??? did you eat “the right thing” in “the right way”?).  However, I enjoy all activities where time ceases to exist, even if momentarily.  Or even if time does still exist, that is only secondary to an internal or external space I inhabit and experience, as amplified by the emotions felt and experienced.
  
• Spending 8 hours just having band practice lmao.  I know as an adult that is hard to execute and usually this activity has constraints.  I also understand why tho - to “protect” each individual’s time which is very important to each person’s health and wellbeing.  Nonetheless - my favorite collective music projects were the ones where we had little to no time constraints, especially while creating/generating, as reckless as that may be.
• The acts of non-linear video editing as well as linear film editing (cutting & splicing film fragments, rearranging them, then taping them up to make the “edit”) alongside the use of an optical printer (a re-photographing machine that allows you to manipulate footage by speeding it up or slowing it down as well as many other cool effects).  The editing of the film or video has a direct impact on the meaning of a story or the expression of an emotion/experience.  It is dictated by variables such as arrangement, pacing, or the relation of one segment to what came before or after.

In case those examples don’t make sense of CRIP TIME conceptually or illustrate my crip clock, consider these different individual realities regarding what ONE HOUR (as a unit of measurement) might mean to 5 completely different individuals in 5 completely different “environments” & “emotional states”.  The only important part of this exercise is that you must wholeheartedly “put yourself in their shoes”.

Using the examples above, I can ascribe an emotion to each examination of time.  I can also ascribe an environment/space to each as well.  This is how I interpret those examples considering my perceptions of TIME/SPACE/EMOTION, according to my own perception of crip time as dictated by my ever-changing crip clock:

[NOTE: symbol “∝” means “proportional to”]

I started crying while writing this out because an intrusive memory came forth in my mind.  It made me think of several years ago when I was in another scary hospitalization in a locked down ward.  This was a long one for me compared to past ones.  Time moves all kinds of ways in those spaces but is especially SLOW leading up to the PRECIOUS visitor hours [TRAUMA-INDUCING SPACE + “anticipation” x “longing”].  My mom was the only person who would visit me daily in these spaces (BLESS) and I rarely shared with others in my life where I was and why.  This became more difficult when I moved into my current home and had to explain to all housemates why my mother was sleeping in my bedroom all month instead of me lol.  I used to think my mom did that because she was my mom and was worried (those places are traumatically awful at treating physical conditions alongside psychiatric ones - but thats an entirely different essay right there).  I now know that she did it because she knows all too well what it’s like to be denied your bodily needs (she is a fellow crip after all).  At one visit, she gave me a watch that my dad fixed himself and needed to give to me.  He is a lifelong “tinkerer” and enjoys fixing clocks and watches.  I don’t remember why he wanted to give it to me then or if I asked at all.   I accepted it and wore it daily as a source of comfort, kinda like how a ship out at sea needs a reliable anchor as much as it needs sails for speed.  It eventually broke one day, but much later after I was out of the hospital and feeling better.  I was relieved because I felt I didn’t need that particular watch anymore (but I still have it somewhere because I’m a sentimental “hoarder”).  While that watch is an instrument of collective TIME, its importance to me lies in EMOTIONal value and meaning in relation to a particular SPACE.

I am not sure if this will sound coherent at all but I tried my very best regardless of the final result.  To write this out - I tried to “employ” my whole inner team to articulate a concept very dear to my heart and being.  I am sending a paycheck to: my inner curious child (a.k.a. “artist”), my inner “schizo” (she helps me see connections that help me understand stuff), my inner psychologist/sociologist, my inner scientist (she’s very “Sherlock-Holmes-ey” but lacks academic credentials), my inner teacher (internalized learning adopted from my mom- the greatest teacher of them all IMHO), even my inner mathematician (although I do admit - that girl is SO unqualified for her position!! F minus on her test for sure!!).

I also “employed” an external team for this piece of writing too.  (However I can’t afford to “pay” you all IRL, but please send an IOU).  My real-life physicist friend/ex taught me a math symbol to aid in my made up formula.  He taught me the symbol for “proportional to” which helped me communicate what that equation means to me better.  I reached out to several writer friends to assist in edits to make sure this piece could communicate my ideas to as many people as possible.  My life partner offered valuable insight as well.  After sharing my formula with him, he did some research on his phone as he always does and told me that this concept has been recognized by others before!

I acknowledge that society ignores the thoughts and voices of disabled people because I see examples of this play out in front of me daily.  We may sound “uncomfortable”, too “heavy” or “dark”, “too emotional”, too “wrapped up in ourselves and our needs”, too “COMPLAINING” or “IRRITATING”.  Often times, people may not even believe us when we describe our symptoms or experiences - this especially sucks when those people are healthcare providers!  But it also hurts immensely when it’s someone we love.  Whatever it is - I do understand it and why it happens.  I feel that way ALL THE TIME TOO (towards myself and others).  But it breaks my dang heart all day, everyday, just like it does others.  It often feels like way too much to hold.  Maybe because its an example of ableism & internalized ableism (we ALL have this “ism” within us and we all live among it).  Like the other “isms” - it’s hard to understand if you don’t deal with it directly.  However, it is inextricably linked to all the other “isms” (classism, racism, sexism to name a few), which aid in the understanding of its unique concepts as well as those of the collective.

Ableism feels to me like hatred of others because you hate your own self (and also refuse to confront mortality).  But you only got there because the society you inhabit [EXTERNAL SPACE] made you hate your own self first [INTERNAL SPACE].

Luckily, we always have internal perception to retreat to as respite from unmanageable limitations/constraints/restraints/circumstance.  With the collective power of our individual perceptions COMBINED, maybe we could become CAPTAIN PLANET, suddenly capable of imagining NEW worlds/structures/systems/spaces we could inhabit.  Ones where everyone’s needs can be met without any stigma or problems at all.

I wonder if after this eventual convergence we will still have any need for our internally perceived spaces at all??? 

It’s Friday, February 28, 2025. 5:57 PM.  I just got back from my required exercise at the pool and my hair is still wet.  Remnants from breakfast are still lodged in my teeth and gums and I want to go water-floss them out but it’s more efficient to wait til after I eat my next meal at this point (I’m having that meal right now).

I had a *most* American moment today when I stopped for groceries on my way home from the pool.  I was in a rush, so I popped into the grocery store that was along the way as opposed to my usual one.  This grocery store was called “America’s Food Basket”.

Today there is a national economic boycott, which I have been adhering to, however - diabetics need to eat!  I took comfort in the fact that I don’t use my own “money” at the grocery store, which is what the boycott requests that you *do not use*.  I instead use my EBT card and I was praying there was enough on it today, even though it’s the last day of the month, meaning the chances of that being a reality are slim. (For context: my EBT refills on the first of the month, however, this looks different for everyone.  Your “date of renewal of benefits” is sometimes based on when you applied/were approved for them.)

Once I reach the end of the produce section, a man with an iPad approaches me.  He asks me if I am an Eversource customer, which I am, since my household receives electricity through this utility company.  I was quick to tell him that we are renters, not homeowners.  I did this because I’ve been approached by people in grocery stores before asking if I wanted the state to pay for solar panels for our home.  As much as I wish I could take them up on this offer - it only works if you’re the homeowner.  My landlord could not care less about our “utility needs” lol.  

This guy reassures me that he *is not* trying to sell me solar panels and that he is simply helping people reduce their utility bills.  I looked around and saw there were others like him, following shoppers around with an iPad doing the same.  I was *relieved* because we haven’t paid that bill since July and it’s our highest bill out of all 3 (electric, gas, internet).  That bill is in my name for our house and only because I am the only resident in our home who is on Medicaid and EBT consistently.  As the bill holder, this grants me a hefty discount that we can all share the benefit of.  However, I am terrible at managing bills, especially when split between 6 people, and dropped the ball on it long ago.  (But I will pick the ball up again when I am able!)

He takes down all my info and accesses my account.  I tell him I’m in a hurry and need to be home by 6pm.  He says that’s ok and that he can walk with me as I get my groceries.  My initial thought was - OH NO TOO MUCH NOISE AND DATA AND ITS CROWDED IN HERE AND WHAT WAS I SUPPOSED TO GET AGAIN IDK.  It was rush hour traffic and the store was indeed very crowded, noisy, and overwhelming.  I was also not familiar with its layout and struggled to find my items quickly.  But I continue to talk to him because we REALLY REALLY need that discount.

We eventually get to the checkout line and I am finalizing my exchange with this guy as I try to pay for my groceries.  He needed to ask me a bunch of more questions and I had to sign off on some stuff on his iPad.  My total at the register came to about $42 and I swiped my EBT card with prayers in tow.  It was declined. 

“You have $7 left” says the man at the register.  I told him I would still like to use the $7.  I swipe again after he adjusts the amount.  So now I have about $35 left to pay.  I begin to worry and panic because all I had on me was $10 in cash that I need for later and my debit card.  All my credit cards are still shut off because I can’t pay them right now.  My dude with the iPad says - “Are you short?”  He hands me a $15 gift card to this specific grocery store.  Its part of the “reward” for engaging with him about my Eversource bill.  I thank him incessantly and accept the gift card, in front of the cashier.  He tells me I can use it right now.  I hand the gift card to the cashier.

“You can’t use that” says the cashier.  I get confused.

“But he just said I could” I tell him.

“You can’t use it twice” he replies.

“But I just got it, so how could I have used it before?”

The guy with the iPad interjects and reassures the cashier that I am using it for the first time since he literally just gave it to me.

The cashier finally accepts it and puts it in his cash drawer.  However, I am still deeply confused.  If they take the gift card after you use it, how could anyone use it twice???

Knowing this question is likely not allowed, I instead put on my “DUMB GIRL” voice to appease any tension in the situation.  (This is not something I have control over, it seems.)  “HAHAHA I’M SO SORRY, I AM ALWAYS SO CONFUSED BY STUFF, HAHA. EXCUSE ME”.

I now owe $20 and confidently swipe my debit card.  I was worried about using it because today rent was due, so I know there is $800 less in my account.  I also know I am due for SO MANY car repairs that I have also put off since the summer and the list is getting hard to keep up with.  There are two immediate needs I know I need to pay for in the next week alone before I even get to the next stuff.  Knowing my car will not pass inspection until I address all the needs on the car repair list, I have been putting that off as well.

Anyways, I am so happy I walked into that grocery store today, because we really do need help with our Eversource bill!  And also, I’m glad that listening to this guy and accepting his help granted me a discount on my groceries.  However, I am still left wondering why the cashier didn’t want to accept my gift card.  Maybe he just didn’t like the looks of me and wanted to give me trouble?  Maybe he himself doesn’t fully understand how the eversource gift cards work?  I’ll never know I guess and it doesn’t matter.

But yea, isn’t america WEIRD?

Its Thursday, February 20, 2025.  4:41PM.  I’m sitting on my living room couch, attempting to regulate myself after a stressful doctor appointment.  The appointment was routine, at my diabetes clinic, where I have to go every 3 months.  At these routine appointments, they take all the standard stuff: blood pressure, weight, in the moment glucose-check using their own device, and draw blood to determine your overall A1C.

Then, you go see your endocrinologist to review data from the past 3 months (they can electronically access my CGM data and that is what we review together), we discuss what prescriptions need to be renewed or adjusted, where the strategically best pharmacy is to send them (sometimes my local CVS has supply shortages, so I have to use hospital pharmacies to source those supplies), ETC.  It’s always a lot for me, which is why I try to bring a buddy to these appointments.  But the buddy is there more for emotional support, because usually the buddy is WAY more confused than I am lol (it’s just a lot of DATA at once, I don’t blame them!).

Before leaving for the appointment, I received a stressful email from the manufacturers of my medical device that I rely on (my CGM; manufactured by a company called Abbott).  The email said that by September 2025, my current device (Freestyle Libre3) will be discontinued to favor the production of a new device called Libre3 PLUS.  I hate any disruption to my routine because I rely on routines to regulate stuff in my body, so I tried hard not to freak out.  I don’t care so much about the device being new.  The problem is: HEALTH INSURANCE MONSTER.  Any new item/device/prescription needs to be approved and sometimes fought for.  This could take literal MONTHS to figure out.  Its just another routine disruption, and quite a headache at that.

When speaking with my endo, she told me my A1C was 6.8 right now.  So, it did increase as I expected (past few months have been stressful AF), but I was comforted to know it hadn’t skyrocketed as much as I thought.  However, A1C’s are not the END ALL/BE ALL of diabetic management, contrary to what most simple medical texts would lead you to believe.  We had to review and address the extreme blood sugar fluctuations in my CGM data.  Here is a photo of some of the data we reviewed:

If there are too many extreme highs and lows throughout the day, everyday, it actually doesn’t matter that you were “in range” most of the time.  You have to research the quantity AND quality of the blood sugar stuff.  The swings become a problem because this has direct effects on brain function.  I can confirm that, because extreme blood sugar fluctuations do have a severe impact on managing my mental health.  I also suspect they make me TIRED AF like allll the time, which would make logical sense considering these constant swings throughout every day take a large toll on all bodily systems.

The strategy we came up with and agreed to was that I will go back to eating the EXACT SAME breakfast everyday (1/2 cup of plant-based yogurt, 1/4 cup of berries, supplemented by my standard nuts and seeds).  Plus: a single glass of iced coffee with no more that 1/4 cup of unsweetened almond milk, which also informs the “carb count”/insulin dose of the meal.  She said this would help out with managing sugars the rest of the day and provide some much needed “stability”.  I did loathe this compromise though, because breakfast is my favorite meal of the day and I love a wide variety of breakfast foods lol.  But I am willing to (grudgingly) make this compromise for the greater good!

I had to ask her my burning question - why is my current CGM being discontinued?  I showed her the email I received and she was surprised because she had not gotten this information yet.  We looked it up on the internet together and had a brief discussion about diabetic supply companies/practices.  Based on our brief research, she told me the new CGM is more suited for those using a system closer to a “closed-loop” for diabetic management.  This means, they rolled out the new product and want us all to use it because they assume we are all on insulin pumps as well.  However, I am not.  I prefer to use manual pen injections at this time for insulin delivery throughout the day in order to manage my stress levels/anxiety about medical devices.  This actually led to a wider conversation about STUFF (me: “so, is this just a ‘capitalism’ thing?” her: “Hahaha. Yes.”).  I told her about last year when I reached out to Abbott (my CGM manufacturer) asking why they no longer included standard alcohol prep pads in every CGM kit.  Alcohol pads are *required* when replacing your CGM.  Since those are devices with needles that sit inside you for 14 days in a row, you absolutely need to make sure the area where you apply it is CLEAN AF.  I do usually keep alcohol pads on me in my diabetic kit that is always in my bag, but sometimes they dry up and are useless.  I used to really RELY on those pads being included with every CGM kit.  Essentially, the company told me that they stopped including them to cut their production costs, which was extremely offensive to me (because those guys already make A LOT OF MONEY off of us).  My endo said that it’s cheaper/easier for the company to stop making Libre3 in favor of Libre3Plus.  Then, we discussed how shitty it is that a company that produces diabetic supplies favors their own corporate interests every time, as opposed to the interests of the literal patients they are serving!

Another hot topic we had to address was my “pituitary gland THING”.  Last year, I got an MRI scan of my brain in hopes of finding the causes of my ongoing hand pain.  The results gave no answers on that - but they did show something else that I now have to “monitor” regularly with my endo as well (because pituitary glands are a component of the endocrine system, same as a pancreas is).  What confuses me still about that is that the clinicians performing the MRI scans as well as my PCP referred to it as a “pituitary gland tumor” while my endo refers to it as a “pituitary gland lesion”.  Whatever its actual name is maybe doesn’t matter?  They are quite common in the human population and are usually nothing to worry about.  But, you do have to keep an eye on it, especially when you already deal with another “disruption” to the endocrine system, such as my T1D.  To keep an eye on it - my endo asked me to do a “salivary cortisol test”.  She gave me this kit twice before, but I kept forgetting to do it.  You have to take saliva samples under specific conditions two nights in a row and return it immediately next day to the lab for testing.  I asked her what the expiration on those tests was but she did not know.  She told me to ask the lab clinicians when I ask them to give me another kit for this test.  So I go to the lab and ask for the test.  When they find some and give it to me, I read over the instructions with them and ask the burning question about its expiration.  How long are they good for?  Nobody knew and told me to ask my endo.  I told them that my endo told me to ask THEM.  We all stood there (3 of us) in a circle of confusion.  Finally, one of the clinicians pointed to an expiration date on the tube for the test!  We were still unsure how long the tests were good for after collecting the sample, but at least we had more DATA.  

My second burning question was: the instructions for taking the test specifically state to not collect the saliva sample when your gums are bleeding.  But, due to my advanced gum disease, my gums are always bleeding!  I asked them if this would greatly affect the results of my test.  Again, nobody knew the answer to this and we were all deeply confused.  I asked them: “Should I ask my endo, my PCP, or my dentist this question?” but nobody knew the answer to that as well.  It’s very frustrating when literal questions have no known answers in clinical settings.  We decided I would still do the test, as per instructions, and hope for the best, but be mindful to take the results “with a grain of salt”.

Feeling extremely frazzled by these details plus so many more that are too long to type out, I finally exit the clinic after making my next two follow-up appointments and head to the parking garage.  The kiosk at this garage only takes credit cards.  This became a problem, mainly because I am terrible at managing my finances lol and all my current credit cards are maxxed out and unusable.  I only had my debit card and cash.  The kiosk could not accept my payment.  I tried hard not to panic lol because I felt “trapped”.  I really do loathe going to the Longwood medical area of Boston, probably due to too much past trauma experienced there.  I look around for a parking attendant, but don’t see anyone.  Finally, I find the “garage supervisor office”.  I had been going to this garage for the past 10+ years but never knew this existed!!  There was an actual human there who I could explain my problem to and she accepted my cash payment.  Just a testament to the value of HUMANS being there to help as opposed to only relying on faulty/limited MACHINES. 

On a “bad day”, I would have probably lost my shit 7 times over during the course of those two hours.  But instead, I took it slow.  I gave myself time and space to think, I allowed myself to ask questions, and I forgave the world for not providing me with necessary answers.  When a system is faulty - there is no more logic, you really can’t count on that.  There is no sustaining pattern or routine you can rely on.  You have to accept the frustrations of RANDOMNESS and VARIABILITY resulting from it.  

But also, I was able to regulate myself because a fellow chronically-ill internet friend sent me some soft cat memes before my appointment.  Every time I began to feel overwhelmed, I just thought about that one cat, sitting on top of a box that his cat sibling was in.  Is this “meditation” lol??? IDK words can be useless sometimes.

Then I cried while sitting in confusing rush hour traffic the whole ride home THE END