#Maybe I just want my body and chronic illness to be treated like a serious issue worthy of study

[iagreewiththis]

OP is like, "You aren't enjoying living in a world not designed for you and where you are routinely discriminated against in even minor ways? Sounds like an internal problem."

when terfs act like having a vagina is a curse and no one with a vagina has ever been happy to be born female and no one in their right mind would ever wish to be female or to emulate feminine qualities as designed by our societal expectations and everyone who has a penis is having a great time and has never suffered ever and who on earth could be born male and want to be female when being female is pure misery from birth to DEATH-

I think you have depression, girl.

this has nothing to do with trans people. get therapy.

[butchpeace]

Hi Sam!

I found a post that you wrote about detransitioning and I decided to visit your blog.

I’m very sorry that you experienced negative effects from HRT. I hope you’re doing better now.

However-

I truly don’t believe that your singular experience is enough to invalidate hundreds of trans people who have received positive effects from HRT. And yes, I know there are other detransitioners in the world, but there are also lots of people who like HRT and found it life-saving. People have different results from HRT, and some bad experiences shouldn’t mean that we give up HRT for everybody, especially considering how many people find it life-saving, and also the fact that HRT is used to treat cisgender people, too.

I have trans friends right now who are on HRT and are feeling the best they’ve ever felt about themselves. And I have trans friends who don’t take HRT yet but cannot wait to take it. I myself experience dysphoria, and if I could take puberty blockers or get surgery, I would (I am agender).

Lastly, I just want to say that even though you may not believe you’re trans anymore, there are still so many valid trans people in the world. Again, your experience does not and cannot invalidate the feelings and experiences of other people, because we’re all different and we feel different things for ourselves!

You probably won’t respond to this, but I would love to hear your point of view, mostly just to educate myself on other people’s opinions. And I hope you’ll change your mind about your current opinions.

-Cass

Hey Cass. Thanks for your question and for being respectful! This is a good opportunity for me to put together the research I’ve found so far. Buckle up, it’s gonna be a long one!

I genuinely hold no ill-will towards people who are currently transitioning. I have many trans friends who I care about and love. My opinions are based entirely in empathy and care for all people who have been on cross-sex hormones.

I agree with you that there are transitioning people who are, at the moment, happy with their decisions and experiencing no negative health effects. And I agree that some of them may go the rest of their lives that way. And if that’s the case, I’m glad for them.

However, the harms of testosterone have been covered up by the trans community for a very long time. We’re now starting to see research backing up what detransitioners have been talking about for years.

What testosterone does (this is the main selling point) is shut down the ovaries’ normal production of hormones. Puberty blockers also disrupt the natural functioning of the ovaries, which disrupts the natural growth process of children’s bodies. This can be reversible in some cases when you stop taking it, but many people find that their ovaries don’t start working normally again after stopping. Not producing enough hormones naturally can lead to many health issues, some of which can be very serious. Some of us need to take estrogen HRT after stopping T. Some develop PCOS while on T, which doesn’t go away. A small amount become infertile.

Testosterone also will eventually cause atrophy in the reproductive organs in most people. For some, it only takes a couple years on T before the vagina and uterus atrophy and cause chronic pain. Many people will claim this can be reversed by using vaginal estrogen, but we have no proof of that, and anecdotal information to the contrary. In fact, doctors didn’t even know that vaginal atrophy was a side effect of being on T until maybe five years ago, when they officially added it to the list of risks. Most of them weren’t prescribing vaginal estrogen before then.

Many people have had unnecessary and/or unwanted surgery because of this issue, and there are other people who have been living with chronic pain for many years, even after stopping T.

So here’s the research we have so far: 94% of females on testosterone develop some form of pelvic floor dysfunction, which can affect bladder and bowel function, sexual function, and can lead to pelvic organ prolapse. (x)

Nearly every detransitioner I’ve talked to has vaginal atrophy that has not improved, without treatment, since stopping T and which causes them more serious problems than just dryness. See this post for more information on our pelvic floor health. (x)

Here’s the study that showed 72% of people on T developing pelvic pain. (x)

Females on T are 4% more likely than women and 2% more likely than men to have heart attacks, according to the American Heart Association. (x)

The health risks they tell you about when you start T include high blood pressure, high cholesterol, and increased red blood cell count. I experienced the first 2 problems while on T, despite having a very healthy lifestyle and I’ve heard of others who experienced the same.

Many people also experience symptoms of menopause, even while on T. Hot flashes, fatigue, headaches, muscle pains, dry eyes, mental health conditions, bone problems, and many more symptoms can all be connected to having ovaries that aren’t functioning at their normal, healthy levels, or not having them at all. I’ve experienced some of these myself and have talked to others who also have these issues.

All in all, we’re kidding ourselves if we think that the doctors who prescribe these things actually understand the long term effects of testosterone on the female body.

There’s so little understanding of women’s bodies in the first place due to historical sexism and neglect of women’s health issues. A lot of doctors don’t understand menopause or the symptoms of it in the first place, so how are they going to diagnose issues like that in young people undergoing cross-sex hormone treatment?

And this isn’t even touching the issues many people report with nerve pain and discomfort after top surgery, rib problems after binding, and other surgery complications.

On top of that, transition has only been widely available to people (in numbers large enough to study) in the past 10 years. That’s why we don’t have long term research that this is safe yet. It’s literally impossible for us to have it.

We also have extremely poor data to show how many people continue hormone treatment and how many people stop. Because of this, we have practically no data on the real detransition rates in the US. Most people who detransition simply stop seeing their HRT provider and stop hormones on their own. None of them are counted in any numbers that we have. There’s also an incredible amount of stigma surrounding transition regret in the trans community. From that we can assume that there are at least some trans people who simply don’t talk about the fact that they regret it. Therefore, the 1% detransition/regret rate that’s thrown around is likely way off.

So, the doctors are lying. They’re telling us it’s safe, effective, and necessary when they don’t actually know that. The whole concept of being trans is based on the idea that you need to take these hormones in order to improve your mental health. And what is that based on? The vague fact that some people are distressed about not being the opposite sex. A hypothetical suicide rate that was never really proven, because they don’t do controlled research to see how many people commit suicide if they don’t medically transition vs when they do. To me, that doesn’t seem to be enough to hold up an entire medical industry that profits from giving primarily homosexual people hormone imbalances and risky surgeries.

This is why I call transition “medical malpractice”, and disagree with it. It’s not based on hatred, but on facts. They do not have the proof to show that this is safe, effective, and necessary. They just claim they do.

I hope that clarifies my position, and feel free to ask any further questions! I also want to note that I have an open mind, always. If the facts end up contradicting my opinions, my opinions will change. ✌🏼

[crippleprophet]

Hi there! I found your google doc about AS and found I relate to a lot of the symptoms. I was diagnosed with fibromyalgia about a year ago (after 3+ years of backpain and over a year of fatigue and widespread pain amongst a whole list of other symptoms). This diagnosis never sat right with me. All the reumatologist did was order some basic blood tests (all came back negative) and poke at my body for twenty minutes before going "you have fibromyalgia, here's a pamphlet, try reducing stress". I'm currently on the waiting list for a rehab center to "learn to live with it". I have pain all over, but it's always concentrated along my spine and in my hips. Especially the 'alternating buttocks pain' feels very specific to my experience. I guess I'm not quite qure why I'm writing this. Mostly to say thank you for making that Google doc. I'm gonna scrape together the courage to go back to my doctor. I'm also just really curious if it's weird that I was diagnosed with fibromyalgia without ever having any scans done? I don't even know if you would have an answer to this, but I saw fibro mentioned in the doc so I thought maybe you'd know. I've tried googling it, but I can't find anything. It just has always seemed really weird to me. Shouldn't doctors have ruled out more things before jumping to fibromyalgia? You don't have to reply to this, mostly just wanted to thank you for the Google doc and your blog in general <3

omg thank you so much, genuinely when people tell me my posts (especially long info ones i put a lot of work into like that) were helpful for them it makes me feel like my life has meaning, there’s a lot i can’t do because of illness but this shit is my passion & even if it’s slow going, responses like this make it so worth it <33

with the usual disclaimer that i’m just Some Guy on the internet who reads a lot and has experienced a lot of medical neglect, my understanding of fibromyalgia is:

people diagnosed with fibro are definitely experiencing real, serious symptoms

many people get misdiagnosed with fibro when doctors discriminate against them (treating it as a modern equivalent of hysteria) and/or do not perform proper testing or data interpretation to reach the real diagnosis (often, but obviously not always, small fiber neuropathy)

some people diagnosed with fibro probably do have the same condition, separate from other existing diagnoses, but the data about what’s going on is 1) very limited to begin with, 2) inaccurate due to widespread misdiagnosis, & 3) often centered on patient psychology in really ableist ways, so it’s basically useless

any doctor whose first-line response to illness, even those genuinely exacerbated by stress like most chronic illnesses, is to reduce stress is an unrealistic, unhelpful asshole who i will one day run over with my mobility scooter on a tour of fury

i think it’s ludicrous that your rheumatologist ruled out AS, especially considering AS (especially nonradiographic AS) often involves neuropathic pain and enthesitis (inflammation of the entheses, where tendons or ligaments connect to bone) sites often overlap with fibromyalgia tender points.

it is unfortunately really hard to find a rheumatologist who will diagnose a condition that is both seronegative (doesn’t show up on bloodwork) and nonradiographic (doesn’t show up on imaging), but depending on what blood tests were done you might not even know if you’re seronegative, and you don’t know if you’re nonradiographic because you haven’t had imaging. for an idea of the standard of care, after my first rheumatology appointment with similar symptoms to those you listed, i was tested for:

complete blood count (CBC) with differential/platelet

comprehensive metabolic panel

routine urinalysis

antibodies SS-A and SS-B for sjögren’s syndrome

rheumatoid factor (RF) for rheumatoid arthritis

IgG/IgA antibodies for rheumatoid arthritis

vitamin D

thyroid secreting hormone (TSH) for hypothyroidism

Smith/RNP antibodies

anti-dsDNA antibodies

antinuclear antibodies (ANA) for lupus

C-reactive protein (CRP) which can indicate inflammation

Westergren erythrocyte sedimentation rate (ESR) which can indicate inflammation

HLA-B27

those were probably like… 6 or 7? vials of blood and a urine sample, and i had an x-ray and MRI. given that there are no disease-modifying drugs for fibromyalgia, i think it’s absolutely neglectful to diagnose anyone with fibromyalgia without ruling out all other possible options, and i think it is definitely medical neglect that you received no scans after discussing disabling back pain.

i totally understand that this may not be possible depending on your circumstances, but if it’s an option i think it could be a good idea for you to get a second opinion rather than revisit the first doctor. but that’s your call and i hope it goes well for you no matter what you end up pursuing! i’m so sorry you’re dealing with this, please let me know if there’s anything i can do to help 🖤🖤

[sickstarlight]

different causes of sickness

a friend had asked me for some advice on how I write differences between different types of sickness or reasons someone could get sick! so I typed up a reference of details I try to keep in mind in my writing. not by any means meant to be comprehensive but these are some of the more common things I see used or use myself!

eta: if you found this interesting or useful consider tipping me on kofi (/jallyns) or getting a $5 commission so I can fix my computer

drinking related:

drank too much: everyone’s threshold for this is going to be different obvs both in terms of how much alcohol they need and how wasted they’re able/willing to be before getting sick. also ime you have to be QUITE drunk for being drunk alone to make you sick, to the point where it may be dangerous, so personally I like this combined with something else - motion, something not sitting right in their stomach, etc - but it can be good otherwise too. probably the first thing the character will notice or be aware of if they have any warning is that being drunk stops feeling good at this point. they might feel flushed and/or clammy and will probably feel dizzy, their mouth might feel really dry depending on what they’ve been drinking. this is probably also the point where they recognize they have limited control of their body, feet might feel too heavy to move or head might be spinning, may feel very clumsy and suddenly become AWARE of it.

they might FEEL motion sick even if they’re not moving too because their motion sense is fucked at this point. might feel heavy but this is likely to be a whole body heaviness NOT just their stomach (though they might be very aware of it); might or might not be able to place the feeling of nausea. maybe burping but it depends on what they’ve been drinking (carbonated or not, mixed with soda, etc) and what else they ate! they MIGHT feel okay after throwing up but their friend probably shouldn’t let them drink anymore even if they do.

also this might come with very little warning, they may go from feeling fine and giggling with their friends to suddenly feeling Wrong to hurling all over the floor in a matter of minutes or even a few seconds. if they have friends with them who have been with them drunk regularly, depending on who’s more sober their friends might notice they look unsteady and/or queasy before they realize they don’t feel well.

other good things here: alcohol that tastes so strong it’s all they can taste when they throw it back up, feeling dizzy but not placing it as nauseous right away, feeling like their head is too heavy to lift. reeling on their feet when a drink hits them too hard and feeling the whole room spin.

drank too quickly - more likely to come on SUPER suddenly, but they’ll probably recognize it right away (unless they’ve already been drinking) because the alcohol hasn’t had time to get to their brain yet. so with gradually drinking more than they should they will get drunk first and THEN get sick, but if they drink too much too fast right off the bat they’ll start to feel some effects probably but they’ll also know pretty quick that their drinks aren’t gonna stay down.

hung over - throwing up from a hangover is a combination of a buildup of alcohol byproducts in the stomach, and the stomach lining being irritated + producing more acid. a headache is also a significant part of the misery of a hangover but (unlike a migraine, where the pain directly leads to vomiting) isn’t necessarily related to any queasiness, so the headache might get worse with sound, light, or movement, but their stomach likely won’t. they might feel a little like they have heartburn (or actually GET some acid reflux) from acid buildup, and their stomach might be sore or feel too warm as well as being upset. 

the only real cure for a hangover is slow sips of clear fluids and bland foods to help settle the stomach and reduce the acid, but lots of people swear by other things - certain kinds of foods, drinking more alcohol, etc, so that’s something you can have fun with! depending on how much alcohol is still in their bloodstream, they might also still feel a little drunk/tipsy and have some issues with their balance, thinking clearly, etc, which could make the nausea worse; also some people might always get sick from hangovers but others might not so consider how your character deals with that! They also might wake up sick, or feel sick right away, or might not feel sick at all until trying to get some fluids or take meds for their headache (especially since ibuprofen/aspirin also irritate the stomach lining).

food related:

ate too much -  character will likely feel bloated and tight, food might feel heavy in their stomach. depending on what they’re stuffed with there might be burping esp if there’s a lot of gas in their stomach, or a lot of gagging and unproductive dry heaving if it’s very heavy/solid. might need to drink something to get anything up, or have help from someone, or might just take a while to finally puke as their overstuffed stomach struggles to break down their meal enough that their stretched out muscles can get anything moving. any firm pressure on the stomach is gonna feel worse and likely to make them gag even if they’re not ready to throw up yet. maybe weak strained tummy noises as they try to digest. (side note if a lot of their stomach contents are liquid like soup, drinks, etc they’ll throw that up a lot faster; also a good excuse to discuss sloshing/jostling/swirling around in their tummy)

ate too quickly - ties in well to eating too much since it’s easy eating in a hurry to not realize you’re full until it’s already a little late - eating or drinking anything too fast can also make some people’s stomachs hurt or get upset in general, and is an easy way to end up swallowing a lot of air which can obviously lead to feeling much more full and tight with lots of burping that could easily bring up more!

ate something bad - this could be rotten, poorly prepared, or just something that upsets their stomach but what it is might change the feeling of it so there’s definitely variety here. probably also feels heavy but more localized, like they can feel the specific food they ate and where it’s settled in their stomach. might also be painful and cause cramping and tenderness. imo nausea from this is more likely to come in waves and recede but might also be more readily recognizable as nausea. some things I like in this scenario - character thinking about what they ate and feeling worse, imagining they can feel individual parts of their food in their stomach, burping and tasting what they ate (possibly noticing the taste having gone sour / etc in their stomach). good place to describe stuff like how greasy smt was/feeling the grease coating their stomach, or otherwise talk about the specific way the food feels in their tummy and how much it makes them want to puke. unlike with eating too much, they’re likely not to feel better until ALL of the offending food is out of their stomach (while with overeating, they may throw up a few times and then start to feel better once there’s less pressure on their stomach).

general notes - if something the character ate is what’s making them feel sick, a lot of focus on hyperawareness of how much food is in their stomach/how heavy it feels are gonna be big sensory things (as well as maybe taste, pressure/tightness, stomach contents moving around)

illness

appendicitis - if you’re looking for something more serious than food poisoning or a stomach bug, this is sure to end up with a character in the hospital as they’ll need surgery! the big distinguishing thing is pain, which will be sharp and located on the lower right side of the abdomen (or may start near the navel and move down). any kind of exertion or sudden muscle movement can make the pain worse. if the character or one of their caretakers is knowledgeable and suspects appendicitis, they might do the rebound test, which causes pain to get drastically worse AFTER placing pressure on the area and releasing it. sickness usually begins after the pain starts and may get worse when something exacerbates the pain as well.

in addition to nausea and vomiting, other symptoms can include fever, bloating, and bowel issues (either diarrhea or constipation), which will usually get worse over the course of the infection. if the character is treated soon enough (within 2-3 days) they’ll usually feel better after surgery and recover relatively quickly, but if they’re not seen by a doctor and the appendix ruptures they’ll likely need more extensive treatment including antibiotics and a longer hospital stay to make sure they won’t develop sepsis. (in some cases, symptoms could seem to suddenly go away when the appendix ruptures because it releases pressure, but worse symptoms would rapidly develop!)

rarely, there’s also such thing as chronic appendicitis, where milder symptoms may appear and recede over the course of weeks or months before developing into acute appendicitis and prompting surgery.

coughs, colds, strep, etc - can all cause vomiting as secondary symptoms thanks to postnasal drip, throat irritation, or forceful coughing. serious enough throat irritation or buildup of mucus can make a character gag, or feel the need to, and so can coughing up phlegm from their chest. if they’re sniffly and have their sinuses draining down the back of their throat, they may end up swallowing a lot of mucus too which can make them feel nauseous as their stomach gets full of sticky snot. I think these work best as emeto scenarios for characters with weak gag reflexes!

food poisoning - separate from eating something bad because food poisoning from a virus or bacteria is a longer lasting illness with a later onset; the character may first get sick within a few hours of eating the contaminated food, or it may incubate and make them sick within a day or two. like stomach flu (also frequently foodborne) many types can cause both vomiting and diarrhea, but symptoms vary depending on specific cause. characters also might puke early on and then develop more symptoms and become sicker later as bacteria multiply and produce toxins, and may take several days to recover from the later onset where they could have persistent nausea, or might feel okay and even regain their appetite if they don’t try to eat  but be unable to keep much or any food down. most types of food poisoning also cause pain, swelling, bloating, and cramping, usually in the lower part of the stomach and upper intestines, so those are other symptoms your character might have to deal with in addition to puking!

stomach flu - character may be feverish or achy as well as nauseous while their body fights the infection, which is an additional great source of hurt/comfort fuel! can cause both vomiting and diarrhea, so even food they manage to keep down might still sting them later. because it directly causes irritation and inflammation in the stomach and lower GI tract, character might throw up frequently or after every meal, or might be able to handle clear fluids but no solids, or some bland foods but nothing with significant sugar, spices, or fat. they also might only be able to drink or eat in very small amounts without bringing it back up. their stomach may hurt and feel like it’s cramping even if they haven’t tried to eat, and they may get only very brief relief of nausea after each time they’re sick because it reduces the immediate pressure on the stomach but not the inflammation; they might feel nauseous constantly or end up dry heaving even when there’s nothing in their stomach, and might need to keep a basin of some kind nearby for a couple of days since they can’t be sure if they’re done. dehydration is a common complication and can cause headaches, weakness, and dizziness in addition to other symptoms! the most common stomach virus, norovirus, is also EXTREMELY contagious, and virus particles can aerosolize and scatter widely during vomiting, so the caretaker may not be safe either.

injury, other medical

anaesthesia - people react to this in all kinds of ways but getting sick is really common so it can be combined with just about any reaction. character might be disoriented or dizzy and have trouble with balance, walking, other coordinated movement. some might be really confused and have trouble communicating their ideas clearly or say things that might not make any sense to other characters. from the anaesthetized character’s perspective though they’re  probably making total sense so it can also be fun to include their muddled thought process and what they’re feeling or thinking that they express in weird ways! other characters might feel pretty clearheaded and be able to communicate clearly though. they might feel “light” or like they're floating, or very  detached from their body; this may cause more dizziness and vertigo. they may also be cold they might feel nauseous right away and persistently from the anaesthetic irritating their stomach, or might only get sick from moving that makes the “floating” feeling worse. general anaesthetic is usually used for surgery so if they aren’t immediately nauseous the character can also wake up really hungry from fasting before, so eating too much or too quickly might also make them realize they’re nauseous and end up with them puking.

concussion - there are a lot of reasons someone might get sick from a concussion, but the most common (non threatening) are vertigo / vestibular disturbance and headaches! the character might  get nauseous or throw up when they turn too quickly or stand up too fast if their balance center is disrupted, or might have head pain similar to a migraine that makes them sick and can have similar sensitivities. mild concussions without other complications can still last up to a week after the injury, but the character should get sick less and less often as time goes on, so the most intense phase for sickness caused by a concussion is shortly after it happens! Frequently repeated or prolonged bouts of vomiting are often signs of more serious injury though, so if you’re keeping it mild they should probably be brief and a little spaced out even early on, though a character might have intermittent nausea between them. other symptoms of concussion are important too here - big ones are short term amnesia, loss of coordination, difficulty concentrating, and confusion. they might also hear ringing in their ears or sometimes have visual disturbances like in migraines! 

migraine - the pain from migraines can directly cause vomiting, especially when it’s at its peak, but it might also be caused by aura effects on balance and vision! (some people get tunnel vision or “kaleidoscope” vision with migraines, some just get dizzy, some people even hallucinate strong smells or tastes which could also lead to nausea!) for some people, the headache gets better after throwing up, but not everyone; they also might or might not feel the buildup of nausea or persistent nausea throughout their migraine, or alternately might retch or throw up almost IMMEDIATELY when any trigger makes their pain worse (common triggers are bright or flashing light, loud or high pitched sounds, strong smells, and sudden movement, but people have lots of different triggers so they can be a lot of things!) many people can’t chase off a migraine until after they’ve slept so you might also include them trying to get comfortable only to have their head start hurting worse or their stomach get upset and make them scramble to get over the trash bin.

motion sickness - anyone can get motion sick but some people are more prone to it than others! so you might have characters who always get motion sick in any moving vehicle, or who are okay in cars but can’t travel on water, or who only get sick with intense movement like on roller coasters - or characters who aren’t prone to motion sickness in general, but discover they get it when fatigued, anxious, etc. different characters might also experience it differently - for some there may be a cycle of gradual buildup of nausea until it becomes unbearable and they throw up, while for others it might come on suddenly, or they might have low level nausea throughout a trip but only puke when there’s a more sudden or violent movement. some people also only get motion sick after a period of time, and might be fine on short trips but get sick if they’re traveling longer.

other notes: many people who get carsick don’t get sick if they’re driving! being able to get fresh air also helps many people, as well as focusing on the horizon if possible. some people prone to motion sickness will also experience the opposite when sitting still but watching movement onscreen like in a video game. likewise, reading or looking at a still object for long while moving can trigger motion sickness, even in people who are less prone to it otherwise.

[mimzy-writing-online]

How do you handle casual ableism especially ableism that’s said to be “a joke”? I am blind and I get this all the time and it’s so annoying because I can’t win.

If it’s said by someone I know I probably won’t talk to much, if ever again, I just grin and bear it. If I’m invested in this friendship or know I’ll be working with them a lot, then I’ll say something. But I do have some personal pet-peeves.

“Oh, so you’re blind, but not like, blind-blind.” 

Whenever I explain to someone new that I’m visually impaired and what I see, I sometimes get the “oh, so you’re blind, but not like, blind-blind.” and I just... *internal screaming*

I hate it because it reinforces this hierarchy of “who has it worst in the world” that abled society has. It’s like saying, “oh, you’re blind, but at least you don’t have cancer.” That is insensitive to both people who are blind, people who have cancer, and people who have both. 

Everyone is going through their own stuff, and sometimes it feels debilitating and sometimes it feels normal. Undermining someone’s experiences by saying/implying someone has it worse is terrible and even worse is using that idea to say “oh, then you don’t need this accommodation that badly, you’re not disabled-disabled.”

I am blind. Just blind. I have a condition that highly affects my life and just because there are a few settings where I can pass for sighted, does not mean that I am not blind.

And those people feed my internalized ableism and imposter syndrome so that I begin to think “I’m not that blind, people have so much less sight than me” and begin to feel like I don’t deserve any of my accommodations, even my cane when my worst days hit. My cane, that thing I bought myself that affects no one apart from warning them I can’t see them, but means everything to me.

What I would like to say: “I am blind. What I’m describing might sound like no big deal to you, but it affects my life every day and I will never, under any circumstances, see as much as a sighted person. Please stop comparing my disability to other disabilities.”

“Can you use your cane as a weapon?”

It was funny the first 3-4 times I heard it, but strangers say it to me constantly and it’s just like... “oh, them Lakers” or “How’s the weather up there” or some other cliché joke that has been told to death. And these strangers don’t realize how unoriginal it is because they probably never interact with other blind people, but I hear it all the fricken time.

I’ve explained to friends that I don’t like this joke. And I have an example of it in A Witch’s Memory, specifically Ulric’s second chapter. But like, I cannot control what strangers think is funny.

What I would like to say: “I cannot. Canes are much more fragile than you think, and each one has cost me $50 each. And I’ve had... six? Over the years. And they take weeks to ship to me. I would be terrified of my cane getting damaged.”

“I bet you’re looking forward to robot eyes.”

No. I’m not. I’m really not. Leave my eyes the fuck alone.

This was waaaaaay before I was diagnosed with Visual Snow Syndrome, which is a neurological problem, not an eye problem, even if the symptoms that affect me most are visual.

And as for the ableism, there’s soooo so much in that statement:

“Oh, I bet you’re looking forward to getting cured”

“I think being blind is terrible, I would want robot eyes immediately”

And if I said that I didn’t want robot eyes ever, I’d almost always get:

“I bet it wouldn’t be that bad, you’d be a cyborg. How cool is that?”

I said no the first time. Respect that answer. It’s my body, my eyes. I’m so tired of this debate.

The only form of this conversation I will ever accept is from my best friend who admitted that he personally would jump at the chance for cybernetic enhancements, especially something that reduced chronic pain. There are some more personal issues I won’t disclose, but from his perspective I understood and we came to the acceptance that we had very different stances and that was okay so long as we respected each other’s choices.

What I would like to say: “I have considered this and personally decided that under no circumstances would I ever want this kind of surgery done to me. Please respect that choice and don’t joke about experimental surgeries with me.”

“Just consider me your personal human guide dog.”

Only one person has ever said this to me, but he’s said it several times while acting as my sighted guide and I hate it, not because there is any ableism directed at me, but because he’s calling himself less than human and I wish he treated himself better. He deserves better. My solution is just saying nice things to him every chance I get about how much I care about him and how he is good.

“Fuck you! I love you! Don’t you dare call yourself a dog. You’re amazing and I love you.”

“Well you’re able-bodied.”

Said to me by another person with a disability, specifically a chronic illness, while complaining about why I couldn’t do something for him.

It was my father.

and I just...

I have literally never not been disabled in some capacity.

I remember my ADHD affected me from the early age of six years old and how much that affected my self esteem. I started having chronic health problems (mostly due to anxiety) as soon as I entered my teenage years. The worst was when I was 19. And then I went blind.

I am in no way able-bodied. Do not throw this hierarchy of who’s more disabled at me. I physically cannot handle the task you asked me to do without physical pain following me for the rest of the day. It’s either going to have to get done by someone else, or I’m going to need help. Why do I need to be in pain all day for this?

You’re young, therefore you are able-bodied.

You means nothing in terms of disability! Lots of people are disabled, visibly and invisibly. And if your kid needs disability aids to perform normal tasks like walking safely outside, you shouldn’t be calling them able bodied.

What I would like to say: “I am not able bodied. I am far from it. What you’re asking me to do will either risk serious injury to me or will cause me serious, lasting pain. Please respect my physical limitations.”

“And on your right you and hear, smell, taste, touch the ocean.”

It was a joke by a close friend when we were on a road trip. Also, we were in a car on the freeway, literally, none of those things would be possible from that distance because all I would hear and smell would be car fumes. 

Like, okay, I know I can’t enjoy the scenic view the way sighted people can, but I am enjoying this drive in my own way. Even the visuals I can see are nice(ish). It’s stimulation, something different for my brain. I’m having fun listening to the music and your story while we move and there are shapes and faded colors passing us.

I’m experiencing this amazing road trip.

Maybe it’s not the way you would experience or best enjoy it, but I am having fun, don’t spoil it by reminding me that I’m different from you and that my experience “must be less enjoyable.”

I told him: “I don’t like those jokes. They aren’t funny to me. I don’t need to see it to enjoy it.” And he stopped. He never made another one after that drive.

(He’s also one of those people who has serious anxiety around making someone uncomfortable, and me telling him “hey I don’t like this, can we do this instead” actually helps us both, because I’m no longer uncomfortable and he can trust that I would immediately tell him if he ever did something I didn’t like. If I’m not speaking up, then I am good. And I can trust that he will stop as soon as I tell him to, and that I can always speak up if I need to.)

[mikauzoran]

Just When I Thought Rose Couldn’t Get Cuter

I’m tired, so I don’t have too much commentary today, but can I just say how cute Rose is? Like, I didn’t think Rose could get any more precious, but she somehow managed it. XD

I feel where she’s coming from. I was diagnosed with Juvenile Diabetes a week shy of my fifteen birthday, and it’s really frustrating when people treat me like I’m breakable because of it. It’s like...treat me like I’m normal unless I am actively having a medical event. Kids who deal with chronic illness don’t want to be “the sick kid”. They just want to be kids and be able to do everything the other kids do. Kids who deal with chronic illness are tough. They have to deal with a lot on a daily basis that their friends don’t have to think twice about, and it’s nice sometimes just to forget for a bit and feel normal, so I totally understand Rose in this episode.

Anyway! Can I say how excited I am to see some Adrienette interaction?! I think this is the first time this Season. XD Look at them! They’re talking to one another!!! AH! (I notice Marinette’s not suppressing her crush anymore either.)

Also, look how tall baby boi has gotten. uwu He’s going through a growth spurt. I’m really pleased that they’re including that kind of detail. It makes me happy.

Adrien’s “sneaking posture” below also makes me happy. XD Adrien, you look silly. I refuse to believe that holding your arms like that makes you more stealthy.

So, since November I’ve been thinking about a story where Juleka gets upset and goes to hide on the roof, and Adrien finds her there and talks to her, and the scene below really reminded me of that fanfic idea. Maybe I’ll write it eventually.

But, seriously, Marinette..Love...the girl just said she wants to be alone. I know you’re trying to help, Sweetheart, but... ^.^; I wonder if it’s too loud in the boiler room for Marinette to have heard Juleka say she wants to be alone? Juleka does mumble. (Can I say how happy I am that my girl Juleka got some real lines this episode? I love it when she actually talks. I cannot wait for this episode in French because I love her voice! ^o^) I’m glad that having the class all come worked out and ended up helping.

I notice that Lila, Chloé, and Sabrina are pointedly excluded from the class bonding scenes. It’s an interesting, subtle choice on the part of the creators to visually show where the lines are drawn between the class in-group and out-group. 

The below scene got me because the thing Nino is feeling most guilty about right now is still how he can’t help Adrien stand up to Gabriel. Even though everyone else is fixating on stuff that just happened and is relevant to the current situation, Nino is thinking about how he feels like he’s failing his best bro. I cannot tell you how much I love Nino. Seriously, he’s one of the most undervalued characters of the show. Nino is MVP.

Okay, but serious talk time. Why is my baby boi trying to Cataclysm himself?! Writers! This is supposed to be a kids’ show! O.O I mean, I’ve always known that Adrien struggled with depression and self-worth issues underneath his optimism and resiliency, but...I was content to keep it in the fanfiction. I’m seriously worried about this kid. Someone give him a hug. NOW.

In other news, Daizzi is baby, Your Honor. She(?) is so absolutely precious. I love her! And she officially has the cutest name of all the kwamis. I was pronouncing it “dai” like the Japanese pronunciation. “Daisy” makes more sense. It’s adorable. ^w^

You know who else is adorable? Pigella. I lover her costume. She’s like a real Japanese magical girl. I love the aesthetic, even though pink isn’t really my vibe. She looks like that one character from Sailor Moon. (I read the manga a couple years ago, but the anime was before my time, so I’m blanking on her name. ^.^; Sorry to all of the Sailor Moon fans I’ve just disappointed.) You know. The little, pink one that wasn’t one of the planets. The outfits look similar to me, at least. The hair reminds me of Usagi. It’s a good look on Rose.

Her Miraculous is gorgeous too. Like, that’s a realistic piece of jewelry that I would actually wear. XD (The ring, earrings, and butterfly broach are pretty normal too, but the rest of them are kind of out there as far as everyday wear goes. Maybe the glasses would be fine.)

Anyway. I’m super proud of Rose. Her optimism and kindheartedness saved the day. ^w^

I’m not sure how I feel about the ending scene, though, when Adrien teases Chloé. It feels like the class is laughing /at/ her, and he’s on their “side”. I’m wondering what developments their friendship has undergone this season that we’ve missed due to the out of order episodes. Maybe I’m misunderstanding the tone of his voice because my understanding of Portuguese is limited. Maybe it’s harmless and they’re still friends. It would make me really sad if Chloé didn’t have anyone left on her side...though, it’s pretty obvious that she still has Sabrina. I’m not sure how long that will last with how Chloé treats her. 

Someone said “It’s true” after Adrien said that when Chloé said things like that she was never kidding. I’m not familiar with the Portuguese voices, so I’m not sure who that was. Maybe that was Chloé agreeing and it was all in good fun. I don’t know. Her body language looked closed off and defensive. :/

But to end on a happy note, look at Adrien’s pose. He’s such a model. XD I don’t think he knows how to turn it off in public.

I was kind of anxious about this episode because JuleRose is my secondary canon ship, and I get antsy when canon touches my ships. I was afraid Rose and Juleka were going to have a fight, but it turned out that it was just a misunderstanding and my ship was strong throughout. ^w^ Long live JuleRose!

[ginger-and-mint]

Happy birthday Myx! 🥳🎂 Have Several questions because I Want To Know Things. ^^; Illness & Injury 6 for everyone, Whump 2 & 3 for everyone, and Writer's 2, 13, 19, and 46 for you!

thank you Mel! ♡ and oh my gosh I’m so delighted by this abundance of questions!

6. What is their go-to remedy for an upset stomach?

Kara and Bramley both like some warmth on unhappy tummy. They’ll make themselves tea, more for the warmth than anything else, and sip it while taking it easy. Kara is likely to get herself a little warm pack too if she can.

Malia tends to go straight for medicine or a tonic. She doesn’t like to be slowed down by her body, and so will opt for whatever she thinks will be most effective in the shortest amount of time.

Si, being a song-mage, was once surrounded by fellow song-mage friends they could ask to cast a stomach-settling healing spell on them. With that option off the table, they'll also look for a fast-acting medicine or tonic.

Grayson and Elliott both try to ignore an upset stomach for a little while in the hopes that it’ll settle. When that fails, Grayson will go get himself a tonic and complain to his friends until it kicks in, while Elliott will either try sitting quietly and sipping on water or tea, or if he can get away, just sleeping it off.

Ryder is knowledgeable enough to take a different approach depending on how upset his stomach is. For something minor, he’ll make himself a digestion-easing tea, like mint or chamomile. If he knows that won’t be effective, he’ll go straight to a tonic. When it’s something he’s eaten that’s not agreeing with him, sometimes he’ll just go make himself throw up to get it out of his system.

2. What is their pain tolerance? Do they close their eyes and block it out, or go into a full blown panic?

Grayson really hates tolerating pain, but if he has to, he can take a lot. Most of the time, he will remove himself from painful situations as quickly as possible and complain bitterly about anything that hurts. But if the chips were down, he would turn out to be a lot tougher than anyone expected.

Bramley is a Sweet Baby and We Do Not Harm Him is not really used to enduring pain and has a low tolerance for it. He would close his eyes and block it out rather than panicking, but not really be able to do anything except sit there and block pain until he was Helped. c’:

Kara is Pure Sunshine and We Do Not Harm Her Either has a pretty high tolerance for acute pain and doesn’t panic about injuries, but she has been known to get faint from them. She’s also easily worn down by chronic discomfort, like being too hot or cold or just having a constant dull ache of some kind.

Malia is the opposite. She can put up with low-key pain or discomfort for a long time, but an acute injury would freak her out a lot more than she’d like to admit.

Ryder has a high pain tolerance on all fronts, honestly. As soon as he feels pain, he looks for a solution to ease it, and if there are none to be had, he’ll grit his teeth and block it out.

Meanwhile, poor dear Si is not great with pain. Song-mages are primarily healers, and so Si is really used to having even little hurts soothed quickly and easily. They don’t panic when in pain, but they do get extremely miserable.

Elliott has a very high pain tolerance when the pain feels within his control; he can power through even the worst headaches or stomachaches, for example. But as soon as the pain feels out of his control (i.e. he gets injured), he panics.

3. How long do they typically take to recover from illness or injury compared to average?

Ryder and Kara, by virtue of Robustness and Being Sensible People who largely take care of themselves when under the weather, are quick to recover.

Grayson and Malia both heal quickly from injuries, but take a little longer with illnesses. With Grayson, it’s more a matter of him not being back to himself until his symptoms are completely gone (he is very much a Man Flu type of guy.) Meanwhile Malia will treat an injury with appropriate care, but is likely to push herself back to full capacity before she’s fully better from an illness, leading to a slower recovery.

As big and strong as Bramley is, he’s actually a little more delicate immune system-wise. He tends to be a slow recoverer, even though he’s good about looking after himself when sick or hurt.

Elliott and Si also tend to have slow and uneven recoveries, but in their cases, it’s due to hooliganery. Si takes good care of themself during the uncomfortable phase of their illness or injury, but as soon as they feel 90% better, they’re eager to leap back into life with their usual zeal. That’s not always a great idea and can lead to them prolonging whatever is afflicting them. Elliott, on the other hand, is just a stubborn idiot who doesn’t take care of himself. He’s particularly bad about this with injuries, often aggravating them and even making them worse because he won’t give them the rest they need to heal.

2.     Are you a pantser or plotter?

Usually I lean more towards plotting, although I do leave a lot of room for the new directions and ideas I know I’ll discover during the process of writing itself. But Ginger and Mint is the big exception -- I started writing it with zero plan whatsoever. I do have an outline for it now, but I was probably eight or nine chapters in before I made it.

While the final product is definitely not as a polished as it would’ve been if I’d planned it from the start, it was honestly super refreshing to not worry and just write. I’ve been trying to bring a little of that experience over into my more serious writing -- it’s so easy to get caught up in plotting and forget to leave room for writing itself to be a generative process.

13.  Describe your writing process from idea to polished

Have idea. Whee!

“Mark out” the things I want to happen in the story or chapter:

I usually do this by writing out short snippets of prose or dialogue related to the ideas I’ve had about each moment. For example, let’s say I know I want a moment where Grayson talks to Ryder. I’d type up a couple lines of dialogue and/or maybe a line about Grayson encountering Ryder and noting what he’s doing or how he’s looking -- whatever’s relevant to the scene. Basically, whatever ideas I have about that scene will be represented in writing in the “mark.”

I have all these marks ordered in the document in the same way the scenes will eventually be chronologically ordered. For me, having visual space is important for my ability to think, so I hit the enter key enough times between the marks that I can see only blank space when I want to work with a certain moment.

Build out each mark until I have a full scene. I do try to go roughly start to finish, but definitely jump back and forth depending on what I’m feeling most inspired by or what my brain seems to be spitting up ideas about. I also skip ahead whenever I feel stuck, which is both a blessing and a curse.

Go back and string the scenes together. Add transitions, fill in any missing pieces, etc.

Re-read the full thing from start to finish and make final edits. Yay, done!

19.  How do you keep yourself motivated?

goooood question fam

I struggle with this as much as the next person (see: 2.5 year G&M hiatus). I haven’t discovered a foolproof method of motivation yet (pls advise if you have), but I do tend to feel inspired whenever something reminds me why I want to write this story. That could be thinking about a scene I’m really excited to share, re-reading a scene that reminds me why I enjoy portraying a certain character or environment -- anything along those lines.

46.  Do you reread your own stories?

Yes, the ones that I like! Some things I’m not particularly proud of and don’t go back to very often, but re-reading pieces of writing I do like helps me feel motivated, inspired, and confident.

[watchyourbluesturngolden]

my annotations for chappy 11 of ysijwa

this is just for drea and leyla to read so if you're not drea or leyla pls keep scrolling :)

ok this is pretty chaotic and like i said earlier i treated this ike a wattpad comment section so... have fun ig :)

SHERLOCK AND WATSON CINEMATIC UNIVERSE SHUT UPPPPP I LOVE YOU SM DREA

NOT MISS SNAP CRACKLE POP

jealous y/n you say???

now i know why you ignored all my tiktok asks lmao

HELPLESS OH MY GOD

truly madly deeply intended :)

damn he's kind of a narcissist yk? like "I have to be serious my entire family depends on it" shut up mr darcy you're not special

devout in his religion hmmmmmm hopefully we see some more religious trauma content bc me too vampy

awww he wants kids but now he cant have them bc hes... dead :(

AWWW his sister taught him to knit :( if he doesn't knit bloodbag a sweater i swear to god

stuffy moron is correct

"IT'S A FUCKING WONDER HE EVER GOT LAID" OIJRIOJWEIOJIEWOJFIOEJOF

"THE ATROCITY THAT IS BEING ACQUAINTED WITH NIALL AND HIS HORRIBLE AFFINITY FOR CHEAP FLANEL" ORJFOIJFEIOWJ YOURE SUCH A POET

he's so dumb she was with him bc he's hot that much should be obvious to him🙄

FOOLISHLY HOPELESSLY UNMEASURABLY IN LOVE HWAT THE FUCK DREA IM SAD

i love that he remembers the spinal cord dislocation and the dead leaves . like yea im dead rn but the leaves in my hair are really what's bothering me the most

what the fuck is a maw

ok i looked it up i get it now

"attachment is for gullible idiots" yup and youre one of them vampy 😌

"the warmest skin his icy fingers had ever had the good fortune to touch" im so soft rn

oh so now she has "a wholesome beauty about her nature" ? i thought she was just cute enough 🤨

HE THINKS HER SMILE COULD RESTART HIS HEART THATS SO CUTE IM OUHOIJFOEWIJFIOEWJ

"the responsibility of keeping her safe, satisfied, and happy" how 🥺 🥺🥺

"as long as he breathes" i thought he didn't breathe lmao BUT I GET THE SENTIMENT

"always when it comes to her" IM SCREAMING RN THIS IS SO SOFT I CANT

ill never forgive him for being so dense either his brain is basically a rock

HE WANTED TO COMMUNICATE THAT HE BELONGED TO HER IM GONNA HAVE A STROKE

couldnt be me i dont want to be percieved

HE ADDED A FUCKING BUTTERFLY AFTER THE DISCO BALLS IM OIWFJIOEWJFIOEJIOEWNOJIWJ(*H(WUIOFJIOEWJFIOWHVIFUEH)U)($UT

HEY a hamilton obsession is not childish😤

'the only person who was allowed to touch him there was y/n' he's like a little kid who's possessive omggggggg

oh this reminds me i rlly hope everything in that chest was new and had never been used on anyone else owijfowiejfioewj

oh please my irish king can control himself let y/n meet the other vamps🙄

"if they knew all along why did it take so long" yk im wondering the same thing dummy

"every day was a battle to earn her love and affection" wtffff how could she hurt him like that he is just a baby

i think he needs therapy tbh

yes he does deserve to be treated with respect and dignity😤

"supporting and tolerating them despite your differences" exactly unless they're a republican

IM SORRY THAT WAS MEAN OIWFJOIWJFEIOw i said what i said tho

they did everything backwards but it's what baby needed🥺

im literally gonna 🔪 bradley how dare he hurt my favorite ribeye like that

PROPER BOYFRIEND-GIRLFRIEND BONDING PLSSSSS im sure he makes sure to say stuff like "as your boyfriend' or 'since youre my girlfriend' all the time now

"everything that has to do with harry has always and will always make her feel safe and secure" ...who's gonna tell her👀

HE BECOMES CLINGY IVE BEEN WAITIN FOR THIS ONE TURN IT UP

awwww my love language is also quality times bestiesssssss

(this is more serious you might want to change the words to nose kisses or something because esk*mo is a slur)

HE wants to be wrapped in HER arms and get forehead kissies like a little baby🥺🥺

i can tell you wrote this chappy bc leyla would never write about ice cream

IF CHRIST CAN GET A DATE MARKER SO CAN HARRY OIFJOEIWJFIOEWJFWI PLSSSSSSSSSS I LOVE HIM

ALWAYS FOR HER WEJFIOJWEIOFJEWIOFJOIEWJFOIEWJF HES SO IN LOOOOOVE

HE DID IT AND IM SO PROUD OF HIM🥺

omg i have a thot imagine if she got a heart murmur or something and obvi he knows bc he can hear it so now he has to find a way to make her get it checked out out without being suspicious 😭

HE ROCKS HER TO CALM HER DOWN WHEN SHES HAVING NIGHTMARES IJFEOWIJFOIWEFJ

“nearly blinds himself for eternity” what a drama queen i love him

maybe learn how to turn your brightness down grandpa

“can women sense emotional distress” why is this so funny oiewfjwieojfioewj

DEHUMANIZING OWEIJOIAJAKLFSDJLKSDJFKLD

not a psychotic episode 😭😭

crippling mommy issues woejfkljdklsjsdf me too king

awwwww he made her a full buffet i would cry

matchy socks im gonna sob

king is a chef 😌

y/n’s head @ harry’s clavicle rn: 💥

“his plush chest” drea its ok you can say titties

“absolutely flawless”? are you sure shes not just cute enough 🤨

he got her oat milk 🥺the sign of true love

hes such a shithead i love him

SPELLING HIS NAM E ON HER TUMMY IM HAVING ANOTHER STROKE

“I DIDNT WANT TO LEAVE YOU ALL ALONE” HES SO WOIFJSJFSDKJKLSDJF

HE DIDNT HAVE TO DO NIALL LIKE THAT 😭😭

RAPUNZEL HAIR OSIDJSKJKLSJF

she traces a tiny heart on him wtfffffffffff im sad

this… is hot

“theres no room on the counter” owifjlksjfslkfjklsj

HE WOULD WALK THROUGH FIRE FOR HER maybe then he’d be a little less cold

im sorry that was wrong of me lisjfskldjfwoiejewiojrei

OH MY GOD OWEIJFKLJSKLFJL SHES SO BOLD “can’t i?” OSIJFKSLJLKJF

oh boy hes gonna kill her

I WONDERED WHEN THE YOURE HOT WHEN YOURE MEAN THING WAS GOING TO COME UP

literally shut the fuck up mr english major

do it bestie kick him in the balls

SPARE BOOBIES MAAM I CNAT BELIEVE YOU aCTUALLY WROTE THAT OWIFEJWIJEKLJFOIEWHOEWIFEHFLKEWJFKLEWJKLJFL

IM WHITE IM ALLERGIC TO SPICE WEJFLKJFKLEJFLKJSKLJKFSJD

“character development at its finest” what a self aware king

y/n stop being mean to him baby just wants to feel close ☹️

“I’m anemic” ok king whatever u say

“ME AND MY CHRONIC ILLNESS IM SENSITIVE” IJFKLSDJFKLJSDKLJ

ahhhhhhh it’s yoga time

“just ask your cervix” jlksdjflksdjflkdsjflk

“if only you knew” ☹️☹️☹️☹️☹️☹️☹️☹️

yeah y/n isnt like those other girls 🤪 shes different 🤪

yes bestie objectify him

THERE IT IS MY FAVORITE LINE IN THIS ENTRIE BOOK

PERHAPS MY FAVORITE LINE IN ANY BOOK EVER

“He hasn't been this stiff since rigor mortis”

i think about this on a daily basis i truly do

grey shorts? what a slut

“call the lapd im pressing charges” me after walking up the stairs

OH SO THIS IS WHERE THE GREYS ANATOMY CHARACTERS FROM THE SPOILERS WITHOUT CONTEXT COME IN

him using his shirt as a towel im BARKING

“I wasnt jealous” yea ok 😃

AGAIN HIM DRAWING HIS INITIALS ON HER SKIN THATS SO WOIJFSKLDJFLSJ

yeah harold she just wanted a little kiss 😤

yeah 😃 its bc he ran track 😃

no bc thats so fucking cute that she pretended she had never seen the show before bc he was excited to introduce her to it 🥺

I would do the same tbh i feel like it would be fun to wash dishes with harry idk why

“that skank” oisjksldfjklsjfklsdjflkd

YOUR THICK SKULL COULD DAMAGE THE MARBLE LSKFJKLDSJKFLSDJFKLSJFKLSJKLSJLDKFJLSKDJF I WOULD CRY

he gets her a cup of water 🥺

ok but like wouldn't she want to wash her hair after it got all sweaty at yoga

awwwww she got his toothbrush ready for him why am i so soft rn

memory foam mattresses sound nice but actually they kind of suck bc you sink down and feel trapped in them 😃

HE WATCHED THE TIKTOK SHE SENT HIM IM HAVING A THIRD STROKE

niall is probably on the dumbest side of tiktok idek what side but it’s probably annoying and he thinks it’s hilarious

noooo baby youre not a monster🥺 someone give him a hug rn

well actually you are kind of a monster but its ok we still love u bestie

I too run on caffeine and pizza pockets 😌

TONSIL HOCKEY WHAT THE FUCK OIEJFLSDKJFKLSDJFLSJLKFJSDKLFJ

chatsnap hes such an old man 😭

true lmao if you dont have social media i immediately dont trust you

not the i just washed my hands tiktok 😭😭😭😭😭😭😭😭😭😭

HE FEELS STRANGELY PERCIEVED RN KJFLSJFLKSDJ IDK WHY THIS IS SO FUNNY TO ME BUT IM LIKE LEGIT LAUGHING

DO IT BESTIE BITE HIM CHOMP CHOMP

“my eyes are stinging” hes such a baby 😭

“MY SIGH”TS ALL FUZZY” SJFKDSLJFLKDSJFLKDSJFLK

“are you all right” “I dont know :(’ i cant handle this my face hurts from smiling lksjflkjafklj

he has a kitchenaid stand mixer omg thats so sexy

ok but has anyone ever gotten salmonella from raw cookie dough bc i think thats just a myth

fuck u for that one vampy

wow he could never deal with my chronically ill ass

WAIT IS IT WAP

NOPE ITS BETTER LSDFJSDKLFJDS

I agree body is absolutely an instrumental masterpiece

I KNEW HE KNOWS SOME TIKTOK DANCES I KNEW IT

“I know youre kinda into that (getting smacked in the face)” SHUT UPPPPPPP SKJFSKDLJFDS

NOT HIM TWERKING SLKFJSDKLFJDSKLFJDSKL

YES YN GET THAT VIDEO AND BLACKMAIL HIM

“I think i popped something” ok old man 😭

why is the word wench so funny lkfjslkfjdslkfjsdlkfj

dont hand it over i want to see him snap

OH SHIT HE JUST JUMPED THE TABLE LSDFJSDKLFJLKDNMNXCMNJKHOIUIOEUR

oooooooooooo

OH MY GOD AGAIN SHE REALLY IS BOLD SLKDFJDSKLFJLSKDJFLKJFS

not guerrilla warfare 😭😭😭😭

do it bestie give him a concussion he deserves it

“no piece of art could ever compare to her” 🥺🥺

“remember that time you told me making out was childish” “no” i hate him 😭

THERE IT IS AGAIN “sex isnt the only way he can feel close to someone anymore” SHUT THE FUCK UP IM SOBBING

this reminds me of the dehydrated intercourse with demonrry

“don’t care, relationships are about sharing’ hes so sdjfksldjfklsjf

DO IT BESTIE KICK HIS KNEECAPS IN

suing disney for false advertisement 😭

THIS SCENE IS KILLING ME LKJFKLSJFLDSJ “just pucker your lips over it” “You have actual brain damage, dont you?” DREA I LOVE YOU KSDJFLDSKJFLKSDJ

how do those bubbles taste babe

ok drea wtf i was so happy and now this??????

“everything’s wrong” NO SHUT UP SHUT UP ITS HAPPY HOURS

not the boob privileges 😭

WAIT THIS IS FROM THE BSE MV ISNT IT “dance is just so hot rn” “depressing shades are just so hot rn”

NOT HIM GETTING ALL STUTTERY WHEN HE ASKS HER IF SHE WANTS A DRAWER 🥺

NO ONE HAS EVER BEEN THIS GENTLE WITH HIM BEFORE WTFFFFFFFF IM CRYING

“youre so fucking cute, my baby” me when i see literally any picture of him

JELLO HAS a STRONGER BACKBONE THAN THIS KSFJSDKLFJDSKLFJ

“betrayed. objectified. taken advantage of. used. “ i hate him sm 😭😭

OH MY GOD IS SHE GONNA SHAVE HIS FACE THATS SO CUTE IM

SHE ISsSSSSS IM SQUEALING

stop him worrying she’ll think it's weird and wont want to do it 🥺

“bold of you to assume id ever be convicted” PLS DREA LAKFJDKSLFJ

“the more you talk, the more appealing manslaughter sounds” I CHOKED DLSKFJDSKLFJDKSJFDSKLJ

HIM WHISTLING TO GET HER ATTENTION WHY IS THAT SO CUTE

Im sorry but its really funny to me how you wrote the sentence “wrong metal, he thinks ironically” … get it ? like IRONically lkfjdslkfj im sorry i’ll show myself out

“this boy?” what a fucking cutie i want to kick him

I forgot what a bop helpless is thanks for reminding me im gonna go listen to the entire soundtrack again-

theyre so fucking cute i hate them

so yea bascally this is the best thing ive ever read and i love you so much and my face hurts from smiling :)))

[brokenfoetus]

...Real Talk for a Moment....

This is gonna be a long rant post, so by all means... quickly scroll past. Parts may even be a tad emo feels for some folks for one reason or another... There’s no shame in skipping for reals.  A lot of days I can’t bother to read anything too in depth... anyway... HERE goes.... While I absolutely love art, and performance, and surreal awkward characterization of myself I call “THE END”. I also value truth, and being understood. My blog here started more as a journal for me to vent, and place to post music and art for me to look at in order to try and just relax during a very difficult point in my life. Every now and then I like to stop and ground myself and post in a sense about the actual me.  There’s frankly not anything magical here, everyone has a story and their experiences and struggles we all do no matter who you are. I suppose like I said, I just like to be understood where I am coming from typically can only be slightly grasped like anyone.  Even if you agree with views and relate to feelings, things become clearer with details.... hence my rants. I get it out of my system and state my perspectives all at once and anyone who happens to be curious gets to read it. Maybe gets to relate and frankly that tends to help us sometimes. It helps people realize they’re not alone in their situations.  Anyway.... I was born a tiny premature gremlin on the east coast of the U.S. I was raised a devout Catholic boy. At age 11 I was diagnosed with the chronic illness Diabetes. when the symptoms started my mother called doctors concerned. We had to wait a full month for my appointment.  It was rough. Some people don’t know of the disease, but most people generally are aware. It typically doesn’t seem all too dramatic to most since people think of it as old grandma and grandpa taking their pills and measuring their food. When you’re talking juvenile onset diabetes it’s different... severity can vary. but, I caught some sort of virus, with flu like symptoms... I was very very sick for a week or two.  Once it passed, I was okay but slowly started feeling gross in other ways.  By the time we got to see Doctors it was too late, and the damage done to my pancreas made it so it created pretty much no insulin. The only theory Doctors had at the time was the virus freaked out my auto-immune system so it made my body attack itself.  It seemed that my white blood cells had attacked my pancreas. I was 11, so... I didn’t know what diabetes was. I asked my doctor if there was a cure, and he explained that there was no cure. My little boy brain after feeling so awful for a month and a half assumed I was going to die. I burst into tears as I was very very afraid. My Doctor quickly explained I wasn’t going to die like I had assumed and that it can be treated. It doesn’t seem so scary most the time when you realize it can be treated. The thing is the hormone insulin can be quite dangerous, as low blood sugars are actually very much more dangerous than high blood sugars. Insulin allows glucose in the blood to travel into cells to basically use as fuel. without it sugar levels rise in the blood stream, and the body starts rapidly breaking down fat cells to use as fuel. Now, that happens normal some anyway usually after eating. Just not rapidly.... when it does, the fuel it breaks down creates ketones which can make the blood toxic... by making it acidic.... Like I don’t really think... there’s any way I can describe what high blood sugar feels like... or what it feels like when your blood starts to become acidic.... I can’t... but... minor low blood sugar attacks can happen to anyone just by skipping lunch or forgetting to eat... and those suck... bad ones... well... they feel like you’re dying. Not to be melodramatic about it all... but that’s all I can say to explain it... it just feels like you’re dying.  Probably because you sort of are..... The brain runs on glucose so when the levels get too low... your brain panics and tries to save itself and alert you. It’s not fun. It’s been many years since I had anything dangerous or serious in terms of low blood sugars but, a couple times in my life when I wasn’t doing very well emotionally and mentally I wasn’t paying attention or being careful with my insulin dosages and how much I was eating. I’ve had 3 grand mal seizures in my life when I was younger.... it’s hard to explain the experience... in mine... I don’t know.... It was like not existing at all, there was nothing. I woke to pain, I couldn’t see or hear it just hurt. Everything hurt head to toe. Then I could hear myself saying it hurt, then I could hear the people around me, and then I could see the people around me.  Then I knew what had happened.  I felt a bit guilty for scaring my loved ones so much.  That honestly made me more upset than the pain. The reason I spell all this out... is my life has mostly been surrounded by fear. I’ve been aware of my mortality and trying to avoid dying on a daily basis since I was a very young boy. The strange thing I suppose.... is after a while... you just get sick of being afraid.... you kind of stop being scared and just get angry... I was a shy timid nervous little dude.... I’ve had long long times where... I’ve felt worthless, I’ve hated myself, felt I didn’t deserve happiness, or love. I’ve let people use me, without standing up for myself. I’ve let people be toxic and cruel, while excusing their behavior. While at the same time condemning myself for any tiny mistake I may have made in any way. I’ve made myself a martyr in personal relationships, sacrificing myself and my feelings. I’ve frankly... done a whole bunch of fucked up things turned inward. The nice thing I suppose, is I don’t do that anymore.... I still make mistakes, and I like to take responsibility for them and make amends or fix them. You can get used to some really fucked up things. Especially when struggling with self worth. I used to think I was useless and undeserving. Today... I’m well aware I’m a PRETTEH PRETTEH GOFF BOI.... I have long time close friends who love me just as much as I do them. I have a wonderful beautiful lovely lady who has my heart and soul whom I want to spend every moment I possibly can with until my bones are dust.  Who helped me a great deal over the past couple years or so.  Helped me with myself and helped me believe in myself again. Just by being my friend and supporting me while I continue to be the eccentric artist asshole I am. and I have Scrambles... THE MOST CUTEST BLACK KITTEH KAT EVAR. I feel rather lucky to have all I do. I appreciate what I have very very much. I’ve been dealing with Diabetes since I was 11... and had been dealing with Severe Major Depression symptoms since my early 20s. over the past five years I finally started getting help, Turns out I don’t just have diabetes.... I have adhd and some kind of sleep disorder. we’ve been calling it narcolepsy but it’s hard to say exactly, it could be hypersomnia which is a super fancy way of saying I’m fucking always exhausted 24/7 which is pretty accurate.  That is usually caused by narcolepsy or something else but... who knows... still trying to figure that part out. I have discovered though that, being fucking exhausted non stop for 20 years will make you very depressed.  Sometimes depression makes you tired, and sometimes being tired makes you depressed. When I was a young lad, I gave myself one single life goal.... That was to finish an electro industrial album and play some live shows. I dunno, to some that might not be a big deal.... I never said it had to be “good” after all. But, when I was at a low point dealing with my stuffs, trying to take care of myself... I honestly spent most my days sleeping. I was awake maybe 4 hours a day.  Things felt very hopeless, that learned hopelessness made me believe things were pretty much pointless.  I would shrug... and talk to my psychiatrist about my suffering in a manner that people talk about the weather.  I didn’t even care anymore it was happening.  It was “oh well... is what it is.” Until I got angry, it was a good thing I was so frustrated.... because it meant I finally gave a shit again. I wanted to get better and I wanted it to hurry the fuck up. Anyway... I’m just rambling and ranting because I was thinking back a lot after doing a sleep study... probably the first in a series of them. I don’t have apnea so I mean... that’s good. I also got to see what some of my brainwaves look like... I also apparently wake up after dreaming some a lot... I also apparently yelled in the middle of the night hahaha. So back to the whole life goal thing.....my long time friend, who introduced me to shitloads of music and bands and has always been close through good and bad times.  Was saying how he knew it was something I’ve always wanted to do, so he wants to help me.  He’s starting to help me plan the performance and then later will help me setup my shows and come with me to what will be really awkward and silly first couple gigs I play.  An open mic night will be particularly hilarious to me, since instead of hearing shitty rock song covers, it will be an insane goth punk dude screaming distorted vocals to weird electro noises haha.  It’s taken a long time to get shit finally going... but... it’s getting there... it’s still going to take a lot more work... on both me and the music.  I have countless things I have to do, but I’m just happy I finally got angry enough to scream fuck it... and go for it... I love a lot of various kinds of work. I don’t really fit there very well though.  Now that the sleep disorder stuff has become worse over time... it’s not really possible anyway.  That’s okay though, since now I’m just doing what I’m actually good at.  Eccentric artist asshole has always been my key features.  xD So, here’s some photos of me before and during my sleep lab and random enjoyable crap I suppose... and my general mood.  It’s been a while....                                                  -The End-

[creativetona]

The start of a treatment plan:

Hi Lupies,

Cheers to a simple, uncomplicated blog to document my days. The days where I’m creative, the days where I’m singing all day long, the days where I just want to release all my creative energy..and the days where my chronic illness just knocks the life out of me. 

I want to document how art brings me to life.

This past month I decided to really get on the ball with my health, I want to do all things I always say I want to do. So I’m putting that little voice that fills me with doubt....in a box and I’m throwing it overboard. I’m done-this is the only body I get. So I want to make it as strong as I could.

When you have a chronic condition like me, at a very young age doctors began to tell me these horrible things that might happen to me as my Lupus would progress & that fear....kept me away from doctors for a while... But I’m about to be 30....

And in a couple of years maybe some babies too.

So I’m at my gynecologist now. Let’s see what this ultra sound says...this is my second appointment at this office. Doctor is bright, insightful & made me feel in good hands. This is just one of the 4 Referrals Ive received so far: 

-obgyn

-rheumatologist

-Orthopedic

-Pain Management Specialist

This is the timeline & how I made my decision to become healthy again.

March: lockdown, start of the pandemic.

Shortly after the announcement of what was happening in the world. I remember I was with my gfs on our last time out drinking. We came back to my apartment & I had a panic attack.

Because it suddenly dawned on me...the world was infected & the one thing we all need right now is strong immune systems...with Lupus that is what our bodies lack.

June: Locked down at home, painting and singing to fight the anxiety. It was as if the world was falling apart but I felt safe in my little home safe bubble. I never left home & my love would come over to bring me food, medicines etc.

Aug: knowing I haven’t had insurance in a while, I had been researching the types of insurances available so I was ready during the November Open Enrollment to make my choice.

November:Signed up, relieved since I received a tax credit qualifying me for an insurance that I wouldn’t normally be able to afford. This was when I began to feel hope. I’d been ignoring this fear of getting sick...not that I was being reckless. I was being careful but the fear of dying a sudden death if I caught COVID sat heavily on my mind. I finally started to feel that pressure gently rise off my shoulders.

December: Insurance Chosen, it becomes active January 1st.

Now between Jan & Mar I began to make appointments & we all know the medical system by now....it sometimes takes weeks to months. They don’t care how serious you are, get in line & don’t die before your appointment. You better have insurance info because they won’t even look at you without them INSURING their payment.

Now fast forward to today, I’ve seen the following doctors.

1. Primary care , 3 times: (Gave me all the referrals & confirmed my lupus was still active)

2.Orthopedic: (for a degenerated L5 disc in my spine & spinal stenosis) this along with my usual Lupus pain, is brutal.

3. Gynocologist: PCOS (Polycystic Ovarian Syndrome) painful af girls. They want to put me on birth control, but I don’t want to treat it with a pill that will treat it but bring me problems getting pregnant in the future, lets see what the options are. I was once on a low estrogen pill, for the least amount of side effects.

4. Rheumatologist: this is the type of doctor that Treats my lupus, this appointment however was the one that didn’t have any openings until the end of March. I’ll see them in about two weeks so they’ll explain to me where I stand in my Lupus diagnosis. Pray Y’all.

If you are like me and are thinking about getting healthy again, and you are overwhelmed. I’m in the same shoes my love. I’ll be sharing the steps I’m taking in the hopes to motivate you. ❤️

We don’t have anything if we don’t have our health.

Oxox,

CreativeCona

[cripple-cryptid]

Getting To Know Me (Again)

It’s been a long time since I’ve really made a serious post that was well thought out and also like, a full update. It’s been a long time since I’ve even really just made a literal “Life Update” as well. So I guess this is a good time. I think it’s important because this blog has changed quite a bit in the past few years, and I think that I need to just make some things clear. This is probably going to get long, and heavy, but I think this is important, and I’m hoping that maybe I can help people in the future after I get this taken care of. Fair Warning: I am literally the worst at organizing this sort of thing, but I would really appreciate it if you read it the whole way through because it would mean a whole lot to me.

Hello. My name is Sava. I’m 22 years old. I’m a transmasculine Agender individual, and my preferred pronouns are They/He. Truthfully, I don’t mind other pronouns as long as they are not She/Her. I am a trans person, and I experience dysphoria. I’m planning on getting top surgery and HRT at some point in my life. I don’t know when, but I hope that it will be soon. I’m also Asexual, and Aromantic. I’m sex repulsed, and romantically indifferent. I am polyaffectionate (thanks to @aromanticpolyamory for the flag on this one, and coining the term as far as I’m aware?) and I have two partners. I love them both very much, with all my heart, even when I am an AroAce. So in summary, I’m a polyaffectionate Triple A (thank you @aro-ace-agender-space for the beautiful Triple A Pride Flag once again I literally love it to death)

I am also disabled. Mentally, and physically. I went most of my life undiagnosed, however I have been tested repeatedly for various things since I was a small child. I was always disregarded, and never got a proper diagnosis for my mental illnesses until I was 17. My physical ailments were ignored and went unnoticed until I was an adult, and I still am working towards a true understanding of what is going on. I am an amalgamation of many things, both mentally and physically, and it is a very long and frustrating process. Everything from my Depression, PTSD, and various other mental illnesses mix with my hEDS, Fibromyalgia, Chronic Migraines, and Insomnia. New symptoms are cropping up, as well as potential new problems. There are many things that make sense to me now that I look back on how I grew up. My old injuries make sense. My weird allergies make sense. Some of the things that I seemed to have inherited from my parents now make sense. But now that I’m older, I’m starting to learn. I have tools, braces, and mobility aids that make life easier. I finally decided that meds are a smart idea, so doing the responsible thing is starting to pay off. I hope.

I’m...not the same person I was when I first joined this site 10 years ago. I was innocent, misguided, selfish, manipulative, lazy, and bigoted. I did nothing to change my views, and didn’t really allow anyone to educate me on things that I did not realize were actually important. I was ableist, somehow sexist and misogynistic, and downright stupid. Despite all this, I thought I was right in all the wrong ways, and never tried to properly justify any of my points. And this is where everything changes.

I am going to put a warning here now. These are my beliefs, and If I receive any hate in my messages or in my askbox because of what I am about to say, I’m not even going to answer them. I am entitled to my opinion, and you are to yours. If I am threatened, I will report the threats. And that is that.

You are allowed to self Dx. I’m not going to say that it’s better than a professional diagnosis 100% of the time, but some people are not capable of getting a professional Dx at that point in their lives. Sometimes, it’s the start of the journey towards finding answers, and that is why I support it. You do not need dysphoria to be trans. Now mind you, I am referring to the umbrella term here. I feel that sometimes, you don’t agree with the identity that you were assigned with at birth, and that it can cause a serious disconnect. This can apply to many different identities, whether that is genderfluidity, gender neutrality, or another identity, it is not for me to say. I am not in charge of your body, you mind, and how your autonomy works. I know that people will argue with me on this, but I think the most important thing is that we all need to support each other in the community, regardless of what labels we use. It’s a journey of self discovery, and sometimes, labels change. It’s okay. I love you no matter what. Aspec People belong in the LGBT+ community. I’m not going to expand on this because I don’t have to. There is plenty of history that you can look up for yourself on the internet, and I don’t have to justify myself. Your spiritual beliefs (or lack thereof) are yours to practice, and I’m not going to shame you for them. I have my own beliefs, and I’m not going to shove them down your throat. I’m not going to tell you that you’re going to hell. I’m not going to try to “convert” you. I’m going to respect you to the best of my ability, and if I need clarification on anything, I will try my best to make sure that I do not overstep any boundaries. I will not shame you for your body, no matter how you look or how it works. It is not my place to tell you how to look, how to dress, or how to take care of yourself. I love you and I hope that you can love yourself, too. Abled people do not have a say in how to treat disabled bodies. You do not know our pain and you have not gone through the same journies that we have. This goes the same for neurotypical people and speaking for neurodivergent people. We know ourselves better than you ever could. POC voices are the only voices that matter on topics that relate to their struggles. White voices hold no weight because we know nothing about what we are saying. BLACK LIVES MATTER. FOREVER.

There are many topics that I have not addressed here, but I cannot think of many more at this current moment. I’m considering making some sort of masterpost, or fixing up my FAQ later on to better address all these things later on. But I have more that I need to and want to say in this post, and I need to move on.

It’s been a long time, and things change. I have changed. This blog has changed many times. I will probably be revamping the appearance of the blog soon as well. so I decided that this long post is a good time to say the things that I need to say.

I want to help people. I might be a bit of a grump, and sometimes, I’m a bit of a wild card when it comes to things that I’ve posted in the past (read as: I’ve posted some really dark shit because I’ve been in some really dark places in the past). I don’t know everything, but I still want to be here to help others. I want to be here for people that are struggling with pain, and need some help. I want to be here for people that are hurting and don’t know how to start the process of healing. I want to be here for people that maybe don’t have the capability to get the help that they need, because they will never have the chance. I want to be the friend that I never had when I was younger. If I can do that, I’ll be happy. This might just be wishful thinking, but I really do want to be a bigger voice in the disabled community, in the mental health community, and in the LGBT+ community. I want to be part of something bigger.

So once again I will say: I’m Sava. I’m 22. I’m a triple A. I’m polyaffectionate. I’m disabled. And I want to help others and make a difference.

[exeggcute]

as a chronically ill person with other mysterious health conditions, do you ever get a sense of fatalism? what do you do during these times? if you don’t feel that way, how do you feel about being sick forever? (I am also sick forever)

absolutely, my friend… when I’m not going back and forth on the “am I really sick or just faking all these things for attention” issue (a worry usually alleviated either by some form of unrelenting pain rearing its ugly head or by one of my doctors giving me That Look and going “uh have you thought about trying the mayo clinic?”), I am super duper susceptible to that sort of fatalism even in the best of times. of course “the best of times” is subjective when the world is objectively hellish and you have all variety of brain sicknesses that make you act irrationally at times (or perhaps THEY are the irrational ones and I am the sane one, I say while evilly stroking a cat which I am mildly allergic to), and then it doesn’t help when we’re in the midst of a global health crisis where people such as yourself are much more susceptible than average and people are willing to treat you as collateral damage—hell, I’m struggling to convince my own girlfriend (who I love more than anything and is my very best friend in the whole world and has taken me to the ER many a time) how serious this could be to someone like me with a compromised immune system, it’s impossible to get anyone else to believe it. you can’t help but feel like an afterthought at best and a liability at worst, you know?

and it’s also hard when, objectively speaking, I know I’m better off than most people in my situation (and maybe even better off than a lot of healthy people) to have a low-level office job with okay benefits and a nice boss who lets me work at home when I’m not feeling great, which is quite often (mostly because she is also chronically ill so she gets it the way most people don’t)… but even “better off” still sucks! it sucks having to pay out the ass for medical expenses (despite your “okay benefits” because american healthcare is a fucking grift) that seem to offer no answers and no cure, it sucks living in fear of losing the safety net you have or a routine that makes life manageable (sort of). and it sucks knowing that you’re not able to do a lot of Normal People Shit that other people take for granted.

so, you know. that’s already grim in the present tense, but then stretching that out for the entirety of your (statistically-shortened) lifespan when you realize you are most likely sick forever (a term which I love by the way, much more fun to say than “chronically ill” and really hammers home the reality of having a mild staph and/or fungal infection somewhere on your skin at any given moment) is exceptionally hard to reckon with. especially when I’m only 23 and have all these damn problems that are likely gonna get worse, not better, compounded by the number of times I’ve gone to see a new specialist and they ask “you’re how old, exactly?” in disbelief after seeing my chart, lol. it’s a very “I’m not like other girls, I have arthritis” moment. and that makes it super easy to fall into a bad line of thinking, either “oh god my life is going to be a miserable expanse of salonpas patches and amox-clav tablets until I die at the age of 61” or “well might as well burn bright and fast by running myself into the ground now until I’m a mere scuff on the pavement following a tragic BMX accident.”

I don’t want to insert some faux feel-good positivity here just for its own sake (and lord knows I am not that kind of person even on the best of days) but I also don’t want to just go on about how depressing and terrible things are for us forever-sicks so let me try to end here on a cautiously optimistic note. all I guess we can really do is treat ourselves kindly and allow ourselves the space to just Be Sick and ask for help and not feel inadequate for something beyond our control. like yeah having a whole host of health issues in my early 20s makes me weird and different, but that’s just one of many things that makes me weird and different, and of those things it’s probably the one that’s least compromising to my reputation, lol. and I don’t even mean that in one of those “don’t let your illness define you!” ways because, honestly, I personally do see illness as something that defines me. but it doesn’t define me any more than eating the exact same thing for lunch every day defines me or being way too into showtunes defines me or playing a lot of puzzle pirates in middle school defines me. the definition of “you” is multifaceted! though at the same time it’s like, yeah no shit that’s a nice thought, but being sick forever permeates nearly every aspect of your life in a very real and tangible way, whether you let that define you in some metaphysical way or not. obviously that’s harder. the best I can offer you here is to not give up (BOO, they say, pelting me with tomatoes and other rotten fruits), surround yourself with people who are there for you and make space for you in their lives—because the people who are worth it always will, I promise—and be your own patient advocate. you know yourself and your own body best and if that means you have to fight like hell to be heard: be that annoying patient! fuck them! and depending on what exactly makes you someone who is sick forever, there may be new treatment options on the horizon—my allergist (who I adore in the way a 23-year-old loves all her old man doctors) is always excitedly telling me about the new biologic injections being developed for people with autoimmune disorders.

it sucks and it’s a long fucking tunnel but there might be a little pinprick of light at the end of it, maybe. or it could just be a flickering dot in your vision about to turn into a migraine aura. but you gotta stick around to find out, right? alright I wrote enough shit already, I hope you’re doing okay friend and I’m rooting for you. sickies unite

[ashtheshortstack]

take my scars & make them stars - ch 1

Rating: M Ship: Kristoff/Anna Chapter One

Tags: Hurt/Comfort, Angst, Sick Fic, Cancer Fic, Chronic Illness, Chemotherapy, Modern AU, Coffee Shop AU, Fluff and Angst, Fluff, Eventual Smut, Angst with a happy ending, Mutual Pining, Mentions of Character Death

Read on Ao3

Previous Chapter/Next Chapter

Anna was aware of the changes coming her way. And there were many. It was rare to be diagnosed with breast cancer under the age of forty to begin with, let alone having to be treated for it in her twenties.  

Of course, they had money. Elsa could afford to give Anna the highest quality care possible. She was lucky for that, she knew. And she was grateful for Dr. Mattias. He was really great, and she was glad that if this had to happen to her, this kind man was the one looking out for her. He told her she was his youngest breast cancer patient. Well, he’d remember her for something at least.

Dr. Mattias made the decision for surgery a bit easier.

Anna sighed, sitting in the chair as she fiddled with her thumbs. “You can’t tell me what to do?”

“I can’t exactly tell you what to do, no, since this is your body and you’re young. It’s ultimately up to you,” he explained as he leaned back against his own chair.

That wasn’t what she wanted to hear. She understood it wasn’t technically within his right to make this decision for her, but he needed to give her more advice.

“Dr. Mattias…” she began, “i-if I was your daughter, sister… e-even your mother, would you tell me to remove them?”

Pursing his lips, she could tell he was debating his answer. “Considering this is more on the aggressive side… if I had a family member in your position I would tell them to do it.”

That was it. That was her answer.

“Then we’re removing them.”

And so, the plan was set in motion. Chemotherapy would come after the breast removal. It was… terrifying to think about. Just how quickly her life could change. What her body was about to endure. She was afraid, sure. But… this could be the beginning of a new chapter.

Besides, Anna knew her breasts weren’t even that big. She wouldn’t look that much different without them. On the outside, at least. She could always buy a bra to stuff when she went out. Under her clothes would be much, much different. Still, she was unable to care. This was going to save her life. She didn’t think anyone else would be looking beneath her clothes ever again anyway.

Hans ruined that for her, she thought bitterly.

She’d never had a surgery before. Elsa and Gerda were both there by her side as she was wheeled away on the table. Anna gave a tiny wave with her fingers, giving them what she hoped was a reassuring smile to calm those worried gazes. Her nurses were nice enough. The surgery was supposed to take two to three hours then they’d stitch and bandage her up.

It was weird to think… she wouldn’t have nipples anymore. She giggled aloud at that, making the nurse give her a concerned look. Pursing her lips, Anna quickly shot her gaze to her lap. The pinch of the I.V. made her wince just a bit. It was something she’d have to get used to for chemo, she knew.

Dr. Mattias walked in the door, giving her a bright smile. “You ready?”

Nodding, she sighed. “As ready as I can be.”

“You’ll make it through this, Anna, you’re young and healthy.”

She laughed at that. “Besides the cancer, right?”

Dr. Mattias had gotten used to her horrible jokes to lighten the mood at that point. So, in response, he gave a throaty chuckle. “Yeah, besides that.”

“Thank you for checking in, Dr. Mattias.”

He smirked with a curt nod. “Anything for my favorite patient.”

“I’m sure you say that to all of your patients.”

Dr. Mattias hummed before heading towards the door. “Maybe, I do.”

It wasn’t long after he left the room that Anna felt her breathing slow. Her head lulled to the side, letting her body relax. She’d never experienced anesthesia before… but her limbs suddenly felt like lead, and she let her eyes droop closed. There were vague memories of nurses walking in and out of the room. She remembered hearing more commotion around her until everything finally fell silent. For the first time in forever… Anna felt at peace.

                                                        o~o~o~o

The weeks following her surgery were hellish, to say the least. She was sore with her skin black and blue. Elsa giving her sponge baths was more embarrassing than she’d like to admit. It was instinct to want to cover her chest before she’d remember—oh—there wasn’t anything there to cover. Draining the fluids from her incision, having Elsa help change her bandages, trying to get clean enough to not stink but not get her stitches wet.

She was so relieved when it was time for her follow-up. Anna was so ready to know. She wanted to know what she was going to look like the rest of her life. Elsa had questioned her about getting implants, but Anna just laughed. No way she was putting something synthetic in her body after dealing with this. There was no predicting how her body would react.

Dr. Mattias gave her the all clear to function as normal again. She could drive again, take showers again, even go swimming if she wanted to. Anna wasn’t quite sure if she was ready to figure out the whole… bathing suit situation yet.

“It looks like everything is healing up nicely, Anna. We’ll see you back here in a month to start chemotherapy,” he said as he made notes on a clipboard.

Anna had so many questions, but she just didn’t know how to ask them. “What…” her voice was weak, but loud enough that it caught her doctor’s attention. “What really happens with chemo?”

Sighing, Dr. Mattias dropped down to his chair, sitting eye level with her. “It really depends on the person. There’s a lot of side effects that could occur. Obviously, hair loss is usually a given. The rest could be really anything. Fatigue, bruising, numbness in limbs, loss of taste, short-term memory loss are side-effects I’ve seen in my patients.”

“So, chemo really sucks, huh?” she asked while forcing a weak smile.

“Yes, it really does.”

                                                       o~o~o~o

 Elsa is there for her first round of chemo. Her sister sits in the chair beside her, taking her hand gently as they pinch the I.V. into Anna’s arm.

She can’t see Elsa’s face since it’s covered by a mask. It was still too dangerous for her sister to be exposed to any serious illnesses in the hospital, but there was a sympathetic glint in her crystal eyes. “Are you okay?”

 Anna can’t help but stare at the drip as it drains slowly into her skin. Knocked out of her thoughts, she does a double take towards her sister. “What? Oh! Y-Yeah, I’m fine.”

“It’s okay to be afraid, Anna, I understand.”

She knew she did. Elsa went through turmoil herself growing up, despite how bitter it made Anna, she knew it wasn’t her sister’s fault. Elsa wasn’t responsible for her parents’ choices. Sometimes she worried Elsa felt guilty. But she made up for it being by her side during this battle. That’s what exactly Anna needed. Her only living family left being there for her, despite the risk of her own health just walking into a hospital… it meant a lot.

It was nice to have their relationship slowly building again. It was nice living Elsa and Gerda… that was home. Truly.

“Thank you, Elsa… for being here.”

Even though Anna couldn’t see her mouth, she could see the movement of her cheeks and the twinkle in Elsa’s eyes. “Of course. There’s nowhere I’d rather be than here for you.”

“I love you,” she told her. Truly and sincerely. Just these last two months of Elsa’s support meant everything to her. It was nice to finally have her sister back.

Elsa squeezed her fingers. “I love you, too, Anna.”

                                                       o~o~o~o

 It was happening. Anna knew it would. Just… not so soon. She gaped down at her hairbrush, seeing the chunks of ginger hair matted into bristles. Quickly, she dropped the brush and gazed at the mirror. She threaded her fingers through her locks, gazing down at her hands in horror as whole handfuls of her hair covered her palms.

Heaving a breath, Anna grabbed the counter for leverage, feeling as though she could collapse any moment. She gave in, letting out a shrieking sob. Falling to her knees on the porcelain tiles, Anna wept. The hairbrush fell to the floor with a clatter. She curled into herself, hugging her torso tightly as hot tears streaked down her flushed cheeks.

“Anna?!” Elsa called before bursting into the door.

Sniffling, she wiped her nose on her sleeve, waving her sister off. “I-I’m fine.”

Her sister was on the ground next to her quickly, hands gripping her shoulders. “Hey, don’t lie to me what’s wron—” she saw it then. The hairbrush and the locks of hair scattered on the floor. “Oh, Anna…”

Elsa tugged Anna into her, winding her arms around her shoulders. The dam broke loose as Anna gripped her tightly in return. Cries echoed through the bathroom as she buried her face into her sister’s shoulder. There was a silence as Elsa rubbed soothing circles along Anna’s back. As her sobbing and sniffles eventually died down, Anna struggled to catch her breath.

Helping her to a stand, Elsa smoothed her hands over Anna’s upper arms. “It’s okay.”

“I-I just…” Anna took in a breath, finally calming herself enough to speak. “I just didn’t know it’d happen this fast.”

Her sister smiled. “You know what?” Elsa passed her before dipping down and opening their father’s old drawer, much to Anna’s confusion. She emerged with their father’s electric razor.

Gaping at her, Anna flicked her gaze between her sister’s grinning face and the razor. “Elsa, you’re not serious.”

“I’m dead serious. We’re taking your power back. Cancer may be making you lose your hair, well, screw it. You’re going to be bald on your own terms, not when cancer tells you.”

Anna let out a laugh of disbelief but smiled, nonetheless. “You’re crazy.”

Elsa simply cocked a brow, hitting the button and the shaver began buzzing.

Sighing, she caved. She pulled the stool out from the vanity and took a seat. “Okay, fine. But if we’re going bald, we’re doing the eyebrows too.”

“Are you sure?”

“Yes.”

Tongue poking out between her lips, Elsa leaned over Anna’s head before pressing the razor lightly to her scalp and shaving a stripe down the middle of her hairline. Anna’s jaw dropped at the sight of a bald line going down the center of her head. Reaching up, she touched it, feeling the hairless skin.

“Oh my god.”

“Well, it’s done now. Might as well finish.”

“Elsa, oh my god.”

                                                       o~o~o~o

Anna had learned the “poor you” stare long ago. Any time Elsa went out in public with her gloves and mask, it was the look she got. Those over sympathetic stares of people wanting to say “aww, poor thing” but the words never come out. But then they realize they’re gawking and quickly turn away as if they hadn’t noticed at all.

But never had Anna had the “poor you” directed at her. She had made a point to still dress feminine… She was bald without boobs. It was all she had left, really. She made a point to wear frilly tops, short high waisted shorts, and hoop earrings. Things that screamed: “I’m a girl!!” Any beanie she wore was a bright pink. For breast cancer? Sure. But it was also her favorite color, so why not? It added to her overly girly assemble.

Thinking about how she hated Elsa having all the attention… boy, didn’t she wish Elsa was still getting the attention for wearing satin gloves in the grocery store. She’d given anything to blend in. Dr. Mattias had given her places to find reasonably priced wigs, but when Anna tried them on… it felt odd. They irritated her scalp, made her itch. She much preferred soft beanies to cover her pale head.

Elsa showed her different ways to apply makeup. It helped, Anna thought. Anything to make her feel more comfortable in this new body. In this new normal that she was steadily being forced to adjust to. It was weird to rub her eyes and lose a few eyelashes. It was weird not having to shave anything anymore. Her body that was once covered in fair ginger hair was suddenly bare, with only her freckled covered skin to vouch for her hair color.

Anna hadn’t meant to shelter away into their home. It just—happened. She had come to dread leaving the mansion just because of the looks. People pretended like they weren’t pitying her, weren’t staring at her. But she knew they were. It was okay. She understood. Seeing someone bald with no eyebrows or eyelashes? She kind of looked like an alien. Felt like one too…

She’d grown accustom to going to the hospital for chemo treatments, staying a few days, then heading back home. No pit stops. Nowhere needed to go in between. It wasn’t like she could go hang out at the coffee shop like she did when she was taking college courses. Besides, what if she ran into—him. That was the last thing she wanted. Letting that grimy man see her at her lowest would be mortifying. Especially since she’d come to feel better after group therapy at the hospital. Hans hadn’t traumatized her, by any means. Anna was mostly pissed off at herself for staying with the jerkwad so long… but she wasn’t going to dwell on him!

Besides, coffee was off the menu. Doc said it caffeine was a no go. She had to stick to the healthy meal-plan they’d given her. A healthy diet meant a healthier body to fight whatever cancer and chemo both would try to do to her.

But apparently, Elsa was growing tired of her hermit activities. She was one to talk! She never went anywhere!

Anna was curled on the couch, a book her hands as she noticed Elsa coming down the curved staircase dressed in a casual but cute summer assemble. Eyeing her sister, she squinted. “Elsa? Why are you dressed like that?”

Elsa wasn’t one to wear shorts, by any means. Unless she was going somewhere. Her sister tended to lounge around their home in leggings or gowns.

“We’re going to the coffee shop.”

Smacking her book closed (she forgot to save her place!), she shook her head. “Oh ho, ho, no. I’m not. What if I see some old classmates? I can’t even get any coffee.”

“Okay, but will one chocolate chip muffin kill you?”

Anna blinked. “Um, yes. Quite possibly, Elsa.”

“I won’t tell Dr. Mattias if you don’t.”

She glowered at her. “I can’t lie to my doctor. That’d be stupid. I know it may not be that big of a deal, b-but… can you imagine? He’ll hit me with that ‘disappointed dad’ look so quick!”

Elsa came over, taking her book from her hand. “Dr. Mattias said to be careful, but he wants you to live your life, Anna. Isn’t that why you came back home to begin with? To get away from the toxicity so you could live happily?”

“Yes,” she muttered under her breath. She hated it when Elsa was right.

“Look, sis, if anyone knows about not living a life, it’s me. But you’ve inspired me to stop being afraid of living. In fact, I’m going out without a mask today.”

“But still the gloves?”

“I’ll breathe the air, but I’m not touching people.”

Anna laughed at that. She sighed with a bob of her head. “Okay, fine. I’ll go with you. Let me get ready to go.”

“Do you want false lashes today? I bought extras.”

She paused on the steps, pursing her lips to think about it. “You know what? I will today. If I’m going out and could possibly see people I know, I may as well look hot doing it.”

Elsa beamed. “That’s the spirit.”

                                                    o~o~o~o

 Ah, yes. There it was. The stare. Many patrons of the store flicked glances in Anna’s direction. She just chose to ignore them. Elsa ordered for them, much to Anna’s delight, and brought back a chocolate chip muffin to the table with her.

Anna groaned. “Elsa, I told you not to.”

“It’s one muffin, Anna. I’ll take the heat at your next appointment, okay?”

“Fine,” she huffed. She couldn’t argue too much. Anna really did want to eat the muffin. She took the paper wrapping off, glancing around. She tried to ignore the unwanted audience. It was fine. She was fine. But when Anna took a bite and chewed, she grimaced and sat the muffin back on the wrapper.

“Anna? You alright?”

Swallowing, she forced a smile. She couldn’t taste it. The sweetness on her palette was dulled, despite how she desperately longed for her taste buds to cooperate. It sucked. Not to mention the ache from the ulcers that were developing along her gums.

Anna hadn’t confessed to her sister about how much it sucked to eat. She’d casually been eating ramen, mashed potatoes, and soups without her sister noticing. Gerda had noticed, she was sure. Since Anna would take whatever Gerda and pick at the food, and her former guardian started making much softer foods. Even offering Anna jello or pudding in the middle of the night.

Trying another bite, Anna pretended to enjoy it and not express her frustration to her sister.

Elsa kept glancing past Anna’s shoulder, and she grew more and more annoyed with her sister’s gaze flickering away. Finally, she caved. “Elsa, what are you looking at?”

“The barista. He’s checking you out, I swear.”

Anna rolled her eyes. “He’s looking at me because I’m clearly a cancer patient, Elsa.”

“No, seriously, Anna. I know the pity look and that’s not the look he’s giving you.”

Scoffing, she set her muffin down. “Watch, as soon as I look at him he’s going to look guilty and hide.”

And Anna did just that. She flung herself around in her chair. There was no line at the register at that moment, so she had a clear look at him. He was a bulky guy. Not one that’d be expected to be making coffee. He was tall, blonde… and maybe kinda cute. Not that she’d admit it aloud. His golden-brown gaze met hers. He seemed surprised that she’d spun in her seat so quickly, but he didn’t break the eye contact. The guy just… smiled at her. Then turned his attention to the countertop he was apparently supposed to be wiping.

Anna gaped, turning back in her seat, sucking in her bottom lip as she felt her cheeks heat. “H-He just…”

“He smiled at you.”

“What does that mean?” she hissed quietly.

“Go talk to him.”

“What?”

Elsa slipped her the credit card across the table. “I want another s’mores latte to take home, pretty please.”

“Someone in your condition shouldn’t drink this much coffee.”

Her sister waved a palm. “Coffee has nothing to do with respiratory problems.”

Anna squinted at her. “Uh huh. If I humiliate myself, you’re fully to blame.”

“I’m willing to take the heat.”

Sucking in a breath, she stood from her seat, making her way over to the counter. She stole a glance back at Elsa, who gave her a cheeky, apologetic wave. Anna didn’t think her sister actually felt guilty at all. She stood patiently since the blonde hadn’t seen her approach. He glanced up, noticing her, his hand slipping off the counter with the wipe.

He recovered quickly, standing up straight and clearly his throat. “Uh, hi. I-I mean… What can I get you?’

“A 12-ounce s’mores latte, please?” she asked.

He nodded. “Name?”

“Elsa.”

Nodding again, he picked up the cup, fumbling with it a moment before catching it in his hand. “Right,” he sputtered out before fleeing towards the machine. Anna watched him from the counter. He seemed to be giving himself a little pep-talk while working.

What a cute dork, she mused.

He came back, coffee in hand as she extended the card to him. Her breath hitched when his hand brushed hers. His hands were huge. She was amazed at how tiny she looked in comparison.

As he worked the register, he cleared his throat. “E-Excuse my prying, I may be completely out of line here. B-But someone in your—condition shouldn’t have coffee, should they?”

Lips parting in surprise, Anna couldn’t hide how stunned she was. It shocked her to have a total stranger ask her about her health. She couldn’t even find it in herself to be offended. It was simply elating to have someone ask and not stare.

He seemed ready to backpedal when she finally got the nerve to answer. “I-It’s not for me. It’s for my sister, Elsa.”

“Oh!” he nodded frantically as he handed the card back to her, not touching her this time. Anna didn’t want to admit she was a bit disappointed. “Right, that would—that would make sense, yes. So—So… if you’re not Elsa… what’s your name?”

Anna cracked a smile. “It’s Anna.”

“Nice to meet you, Anna,” he said quietly

She glanced at his name tag. “You too, Christopher.”

His brows furrowed then he glanced down at his name tag. “Oh! Oh, right. Yeah. It’s Kristoff, actually. My boss—well, there was a misprint.”

He was charming in his own awkward, cute way wasn’t he? Anna chose to ignore the way her heart fluttered hopelessly in her chest. She gave him a nod and a smile. “Well, then… nice to meet you too, Kristoff.”

Kristoff’s lips twitched into a smirk. “Y-Yeah.”

“See you around,” she added before retreating towards the table.

Elsa was grinning, far too proud of herself when Anna reached the table. Sliding her sister her coffee, Anna buried her face her palms.

“Anna, you did great,” she cooed.

She shook her head.

“Oh, stop being dramatic. He’s so into you.”

Anna glanced back over her shoulder at Kristoff, who was now serving a group of customers that had arrived. “No way. There’s no way,” she said and turned back to her sister. “There’s no way a guy that cute would like a bald girl with no boobs.”

“So, you admit you think he’s cute?”

Standing, her chair squeaked as it slid from the table. “I think it’s time to go, Elsa.”

Elsa gave a knowing tilt of her head, quirking her brow. She took the credit card from Anna, slipping it into her purse and pulling the bag over her shoulder. Elsa took her time picking up her coffee from the table, making Anna sigh in annoyance. She knew sure as hell that her sister was taking her sweet time on purpose.

As they headed out the door, Anna chanced one last glance at Kristoff. He waved. And she couldn’t help it… and gave a tiny wave of her fingers in return.

[pitiless-achilles-wept]

"You Don't Look Sick": Privilege and the (In)visibility of Illness

Today I left the hospital as a cyborg! I was there to have a chemotherapy port implanted, making me part human part machine, so now if I write academic pieces about the "post-human" or "human-machine hybrid" I'll be speaking from personal experience. More significant for me, though, is that this relatively small piece of metal and plastic is the first truly visible sign of illness that I have. It makes my body legible as "sick." Cancer is insidious for a lot of reasons, most of which can be boiled down to how good it is at hiding. Cancer cells evade the body's natural detection and elimination system, sneaking around and amassing quietly. But also, people with cancer frequently don't "look sick" at all. In fact, I had been looking healthier than any time in recent memory. I had finally gotten to a place of stability in my personal and professional life (after years of crisis after crisis that left me devastated) and gotten back to running and occasional yoga. I felt so much better. I had shaken much of the bone-weariness of depression and the chronic fatigue that had dogged me since my grad school years. (Still no explanation on that one, by the way, but it was serious enough that it left me with sky-high white blood cell numbers that warranted an investigation for cancer in 2016...which I did not have then.) I was feeling undeniably and pleasurably healthy! I was not. I had stage 4 cancer the whole time I felt I was healing, improving, flourishing. It causes pretty extreme cognitive dissonance for me to think about that, as I know it did (and probably does) for many people in my life, especially those who went through much or all of the past 18 months with me. I remember saying to a friend who I'd met about 9 months prior, "I've had cancer the entire time you've known me," and both of us doing some stunned blinking as that fact sank in. All those things I did with cancer--buying a house, meeting new people, traveling to new places, going hiking, giving papers, going swimming, playing pool, drinking in bars, losing at pub trivia--all of them done while I was unknowingly harboring this disease. It was, in a very literal sense of the term, incredible.  [More thoughts and some pics beneath the cut]

Truthfully, though, even since I have known about having cancer I haven't "looked sick" at all. As I've continued to live my life as usual (or maybe even with a little more urgency and intensity than normal) I've seen people who know about my diagnosis maybe squint a little, to see if they can see a way it makes me different. From afar, it certainly does not. From closer, it also mostly doesn't. The only time I notice any impairment, honestly, is in the slight shortness of breath that I get from the lesions in my lungs. And even that only takes me back to the walking pace of a normal human instead of a long-legged ex-New Yorker. I imagine people I see every day might go through cycles of forgetting and remembering, as I comment on what's going on in my life. People who don't know about my diagnosis absolutely cannot tell that I'm sick and, with them, I face the choice between answering questions about how I'm doing honestly ("pretty well, given the circumstances, but the circumstances are terrible") or continuing the social forms and responding without really engaging. For what it's worth, I usually do the latter because the emotional work of telling people, over and over, about your serious illness is considerable. I may not have a choice much longer, though, as signs of my disease become more visible and more legible. (There's another post in here about illness and politeness, which perhaps I'll get back to later. But suffice it to say that if I owe you a thank-you note or a reply email I am very aware of it and also paralyzed with inability to do anything about it and I'm sorry.) This is, I think, much more what women fear about losing their hair. I've seen it interpreted as more like vanity, and I'm a little guilty of believing that when I was first diagnosed. I thought, "I don't care THAT much about my appearance so I won't care about the hair thing as much." But now that I have more context I feel like it's more that having no hair is a marker of extreme difference from the norm of what women look like.When men are bald there's a lot more of a chance that it's something natural and that they would choose to wear it that way. When women even have short hair--which I have for a couple years now--it's a little unusual. Choosing to be bald would be even more extreme so that covering up baldness with the inevitable headscarf itself reads as a sign of cancer. (Of course there are other discussions to be had here about the norms of masculinity vs. femininity...) I'm also camouflaged by my age, which is so young for this disease that it's not what people immediately think of. (Yet another post I could write would be about the similarity of many chemo symptoms to pregnancy and the assumptions that leads to.) Even my decision to dye my hair purple (which has now mostly washed out, making me a bleach blonde on top with purple underneath) reads purely as a fashion choice. And there's even a tiny chance that even if I go bald people will think of that as fashion too. Because another way in which I don't read as "sick" has to do with the privilege I've always enjoyed from the "halo effect"--being tall and having naturally good bone structure, thick hair, and just generally "good genes" (until they gave me cancer!). If you do have a look like that which lets you look "high fashion" it's far more plausible that you might choose to wear various hair colors, or a series of wigs, or be totally bald just to experiment with your looks than if you don't. What's more, pretty people, in general, don't fit our concept of illness. It's not just that we don't think sick people generally look "pretty", but that we tend to assume pretty people are also healthy. So I've been riding that wave of privilege too. But it's all about to change. And while I'm a little ashamed at how worried I am about not reading as "pretty" to a general public (it's hard to give up privileges), I'm also interested to see how my experience changes as I lose some of those standard beauty hallmarks. This port I have is small - about the size of a quarter - and it sits just below my collarbone. A catheter runs up from it into a vein in my neck. It is not easily concealed by most regular outfits, even though it certainly doesn't draw attention to itself. I asked the surgeon today whether it would be visible to and she said that, "since you're so skinny," it absolutely would. She also told me she was taking extra time with the sutures since "you have such beautiful skin that I want to minimize the scarring." The nurses wheeling me into the OR commented on how long my legs were, how great my hair looked. They were being nice to me because I am in a tough position, certainly, and it is comforting. I'm sure they say kind things to whoever they are caring for. But probably not those things. Even here, there is privilege. I'm intrigued, though a little intimidated, by the ways in which the treatment process will necessitate that I rethink "beauty" for myself. I've been able to more or less meet the basic cultural standards without trying basically my whole life. That's not a brag - that's my good luck. And please don't get me wrong: I have certainly have had my own share of insecurities and gone through phases of truly hating my body and my appearance. (The way we feel about ourselves and how we look is seldom logical or altered by observable facts or even external validation.) But now I have a whole series of changes facing my body that make me realize how very comfortable in it I have been and how much of it I have taken for granted, both in its capabilities and in its appearance. It will be a difficult part of this process. And although I feel trepidation I do also somewhat look forward to the ways I will be forced to re-conceive of my body--of what it is and what it can do. The past few days had beautiful weather here so I allowed myself to go running. I had worried that this was something that, while having chemo, I should not do. But thinking about what I would ask of my body in the coming months made me decide that I should think of it as an ally; that we should work together to expel this invader. To do that, I needed to work with it to be strong, not treat the whole body itself as either an enemy or a passive vehicle. I'm not allowed to run for another week thanks to the surgery, but I'll be doing what I can.   As academics, we often forget them or regard them as a hindrance. More than once, I've wished and heard others wish to be a "brain in a box." My friends: no. Do not do this. Our bodies are incredible, truly. Give them some range and let's see what they can do.

[sadisticscribbler]

Why Suicide?

Why do people kill themselves? I’m not talking about those who attempt suicide for attention, nor do I mean to belittle them, but what of the many more who chose to end their lives?

I am not asking some philosophical question here, but am talking from personal experience. You see, I have just found myself about to take my own life, and would have if I wasn’t disturbed just at the point of no return by a mundane phone call. Maybe because of my autism, but I had to answer the ringing phone which subsequently took me out of what I was about to do.

As a result I was left in some sort of limbo in which my body took me back home, and here I now sit talking to myself via this blog post. So how did I get there, and why do so many people find themselves where I did?

There is no simple reason… or rather there is no single event that in itself triggers suicidal ideation. Contrary to popular belief, suicidal thoughts aren’t caused by moments of depression that need to be “got through”, it is a more serious state of being. Let me explain: I was born suicidal.

As shocking and unbelievable as this might sound, it is true. I first attempted suicide before I was aged three (I drank bleach) which was not recognised for what it was… a genuine attempt to kill myself. I subsequently tried two more times in as many months, but survived them all. But what could have happened, you might be asking yourself, to make me want to kill myself? In a word: Nothing. Or in another: Everything.

For some context, I was born autistic; and I also had a very high IQ. Together, these factors, and the world in which I found myself, made this world intolerable. And it still is nearly sixty years later. The reason I have survived thus far is not because I have found some way to navigate this world, but in spite of it. No matter what experiences I have, it all comes to the same conclusion that I shouldn’t be living in this world. So why am I? For several reasons: external interference (such as my parents as a child), my Catholic faith, but more importantly my constantly trying to deny the inevitable. So what has happened now that these mechanisms are no longer sufficient to stop me doing the only thing available?

Until a few years ago I had responsibilities and family: both extended and my own wife and kids. Then I became chronically ill and unable to work. My parents and brother died and my family fell apart. And then my (now ex-)wife decided I was no longer useful to her and took everyone and everything away from me. I was left disabled and with nothing to my name. I had nothing and no-one… except for one very important friend who stuck by me. Last year she killed herself.

Like myself she was autistic and very intelligent. We talked endlessly about her decision to kill herself but I was unable to give her a convincing reason not to. This is because everything she said had been correct, and I could offer her (nor myself) any reason not to die. Unlike me she was an atheist and so the threat of eternal torment was not enough to deter her (as it had been doing for me). So I was unable to satisfactorily answer the question: What is the point of continuing to live? And my being unable to save her affirmed her conclusion in that, in my case, if I can’t save the life of my only true friend, then what is the point of my being around?

Before continuing with my journey, allow me to add her words herein as they show not just how I feel but how I and others, I suspect, see the world and why we can’t live in it. This is her final statement:

If you’re reading this, chances are my attempt to leave the world has been successful. If you happen to be religious, please pray for me to be treated compassionately in my next life, as I will be praying beforehand for this as well, as a relatively quick and painless death, despite my lack of religion.

Many people say suicide is selfish. To those, I would want to ask: is it not also selfish to expect someone to live, when existing seems to them intolerable?

None of us ask to be born, but we can decide when to die and in my eyes that right is fundamental; a human right, just like any other.

People stigmatise death, especially voluntary death, because to them it seems the most terrible thing they can imagine. To that, I say, what is so bad about death? The universe is so very old and will continue to exist long into the future, perhaps indefinitely. So why does it make a difference if someone dies at 20 or at 80, provided their life was not taken against their will?

As an autistic, I long for a world where autistic people can exist happily, but I’m not sure this can ever happen. I have pretty much given up on the world at this point. It’s not designed for people like me.

So who am I in this world? An autistic, chronically depressed, jobless, homeless in effect waste of space who was born into a female body but probably isn’t. Born to a teenage single mother, raised by a grandmother who is now dead and fated to a life where anything I attach to will be my undoing.

Dying isn’t something alien to me. I first began to think about suicide around the age of 7. As a child, I was intelligent and had a seemingly bright future, but that rarely translates into the adult world.

The only thing I really regret is losing the two people closest to me. Mostly, however, I am sad about losing hope, for it is only hope that keeps us going.

I’m also tired. To quote The Green Mile, “I’m tired of people being ugly to each other. I’m tired of all the pain I feel and hear in the world everyday. There’s too much of it. It’s like pieces of glass in my head all the time.”

Like my friend I am autistic, suffer from chronic depression with episodes of clinical depression, jobless, and as illustrated above: “a waste of space”. I also have a catalogue of degenerative diseases. So what is there left to hope for?

“Oh it’s the depression talking, and that can be managed” you may be thinking. Sadly no… and not just just due to the mental health teams (who spectacularly failed in my friend’s instance). Depression is not an aberration of thought that can be corrected with a shot of serotonin. Rather it is the cold hard truth of reality that serotonin (naturally produced or chemically induced) obfuscates. This is why it is nigh impossible to help someone resist suicide. And I speak from experience of trying to help others, as well as trying to convince myself. In the end, the only argument against ending one’s life is the I “haven’t done it yet, because I’ve managed to knowingly delude myself”.

But what of speaking therapies… can these help? I would say no. This is because that people like I already see the reality of a hostile world, that no matter how hard we try to improve our lot in life, the full horror of it is a mere hair away. Distraction is no solution. So speaking with a therapist can only succeed if he/she can ‘enlighten’ the person to the ‘knowledge’ that life isn’t all that bad… or that it won’t always be that bad. But what if you’re smart enough, or have experienced enough, to see that what the therapist has said does not change the reality that there is no reason to go on, and that continuing to suffer now is worth the remote possibility that a less terrible time might momentarily punctuate the pain.

But it cannot work… there can be no going back: Once a child realises Santa doesn’t exist, there is no way to recapture nor replace what it meant to believe it. And so, once we have seen the world for what it is, there can be no way back. All that is left is how long we can distract ourselves, and finding a reason to so. Sooner or later one or both of these management techniques will fail. And it might take only the slightest of not-so-bad problems to break it all apart. And this is where I find myself.

I cannot promise that what almost happened tonight to me might not happen again, but for now I am still here writing this post in the hope that someone somewhere might be able to find a way to keep going that I, and my late friend, cannot. So, what was my ‘straw that broke the camel’s back’? I have been trying to cope with losing the only, and most dearest friend on whom I leant very much, and whom I loved very deeply; as well as developing cancer to add to my list of debilitating and very painful medical conditions. The Catholic church has become victim to corruption and evil, including in the office of the Pope. So I truly am alone. The loneliness is immense and the daylight short. I am barely managing to live on my benefits, and it is not easy. And then I receive today notification that my benefits have stopped. So soon I shall be unable to feed myself nor have shelter. So is there any reason not to kill myself? I thought not.

I won’t be out on the street tomorrow, but the time is rapidly approaching. This would be the end of the line for me, so as my friend said, we may be unable to fit into this world, “but we can decide when to die and in my eyes that right is fundamental; a human right, just like any other.“

[iamjjmmma]

Sans’ Death in Handplates: WHO (I mean what) DUNNIT? (Featuring a Little Bit of Orthopedics

(Handplates is by @zarla-s)

Note: I am not trying to be morbid. I am not trying to be creepy. I’ve been studying medicine lately, and I've been reading up on diagnosing other people. I just thought it would be a fun thing to do and a great opportunity to teach others a little about medicine. Note that just like "Misery" itself, this does contain serious themes that may bring up trauma for some people, so if you do not feel comfortable with this, please hit the back arrow now. Thank you.)

In Tumblr user and artist zarla-s' comic "Misery", Sans dies of an unknown illness and Papyrus attempts to move on. Zarla has also mentioned that this comic was a "barely disguised vent [series] about death", making it a series entailing high personal expression. It's all beautifully sad, but there's just one problem...the illness is unknown.

So I, DETECTIVE PIKACHU, ask you to join me on the hunt to find this illness.

The good news is that Sans is a skeleton. This rules out all illnesses with other body systems, narrowing it down to a nice few hundred or so. (Don't worry! We'll only go through the more well-known ones.)

I’ve chosen to lay out six culprits here:

-Arthritis

-Osteogenesis Imperfecta

-Osteoporosis

-Osteosarcoma

-Osteomyelitis

-Acute

-Chronic

-Paget's disease of bone

Because most of “Misery” happened ex post facto,  we don't have the time or the interest to dive into much information about Sans' illness  However, we do know a few things. This illness is:

 -Fatal (uh, yeah) 

-Chronic. Chronic illnesses are illnesses that last for months or years. This isn't a very sudden (acute)  illness. If it was acute, it would likely result in Sans very quickly falling down and Papyrus having to take him to the hospital. 

-Progressive, meaning it gets worse over time instead of better. No, it does not mean the average Tumblr user, although medical terminology can be very confusing (that was a joke hardy har har).

-Very hard to treat. Alphys said there was nothing she could do for him, at least at the stage the illness was detected. If the current most brilliant mind in the Underground cannot do anything for him, I doubt anyone can. (https://zarla-s.tumblr.com/post/143139923780/i-dont-have-a-caption-for-this-sorry)

-Very unnoticeable, or at least noticeable enough to hide from at least one person until the final stages. 

In addition, we have to analyze Sans' demographics: Sans is male and approximately in his 20s.

So let's examine our first culprit: ARTHRITIS.

By far the most famous skeletal illness, arthritis involves the joints becoming inflamed. This results in them becoming reddened, painful, and swollen. 

Arthritis is chronic, which fits one of the requirements. In addition, it is also particularly difficult to treat, with most treatments being attempts to increase quality of life without treating the overall condition. 

Whether or not it can be hidden from others depends on pain tolerance and how severe the arthritis is. And while *some* cases of arthritis can be progressive, it differs from person to person.

But while arthritis can decrease quality of life tremendously, it is not fatal in the least. And while arthritis affects both men and women, it affects women more often than men. In addition, it famously affects older people, specifically those 60 and older. So Sans obviously does not fit in this demographic.

We can clearly see Sans does not have arthritis.

https://www.mayoclinic.org/diseases-conditions/arthritis/symptoms-causes/syc-20350772

https://www.emedicinehealth.com/ask_rheumatoid_arthritis_life_expectancy/article_em.htm

https://www.rheumatoidarthritis.org/ra/symptoms/progression/

-Arthritis

-Osteogenesis Imperfecta

-Osteoporosis

-Osteosarcoma

-Osteomyelitis

-Acute

-Chronic

-Paget's disease of bone

The second culprit is osteogenesis imperfecta. 

Osteogenesis imperfecta, also known as brittle bone disease, is very straightforward. The individual is born with brittle bones that can break easily, and sometimes for no apparent reason. is very rare, but is still relatively well-known. (And what's very interesting is that individuals who have this tend to have blue sclera from the defective connective tissue that comes with osteogenesis imperfecta. But we all know Sans' eyes are blue for a different reason...)

Osteogenesis imperfecta is definitely chronic, so we can knock it off that list. It is also almost impossible to completely treat, with most treatments aiming at boosting bone strength rather than reversing the condition. And all ages and both genders seem to be affected by the disease equally 

As with arthritis, whether or not the disease.is progressive differs from person to person.

But the only ways you can die from the disease are either respiratory complications in infancy and childhood or if complications arise from one of the factures, which both we'd definitely notice in the comic rather than Sans falling over on a hill (https://zarla-s.tumblr.com/post/141061451866/its-always-too-soon). In fact, the disease would be so noticeable that if Sans had this condition, we'd know from the first few pages.

So we can safely say Sans does not have this condition.

http://www.kjophthal.com/article.asp?issn=0976-6677;year=2017;volume=29;issue=3;spage=240;epage=243;aulast=Das

https://my.clevelandclinic.org/health/diseases/15807-osteogenesis-imperfecta

http://www.oif.org/site/PageNavigator/AOI_Facts.html

http://www.oif.org/site/PageServer?pagename=RES_Glossary

-Arthritis

-Osteogenesis Imperfecta

-Osteoporosis

-Osteosarcoma

-Osteomyelitis

-Acute

-Chronic

-Paget's disease of bone

Ah, yes. The third culprit. Osteoporosis.

Also relatively well-known and a meme (https://m.youtube.com/watch?v=3NUIrVivPhso). Osteoporosis mainly involves bones greatly reducing in density. This causes pain, stiffness, a remarkedly changed stature, and most importantly, a higher chance of fractures. (I have lots of relatives and their neighbors who have this, and most of the time, even my hugs are little more than glorified pats.) Things like playful punches, bumps into the corner of the table, and tripping and falling turn from annoying to dangerous and fatal, especially for a 20-something-year-old. In fact, there are theories that the reason why Sans has 1 HP is because he has osteoporosis (https://www.google.com/amp/s/aminoapps.com/c/undertale/amp/blog/why-sans-has-1-hp-can-bleed/YWjI_bu1GjaVaNqa0pQ61oLaD4GozkE), but this is only for the regular Undertale timeline. In Handplates, we all know that Sans has 1 HP because of the nature of Gaster's experiment. 

Osteoporosis is definitely chronic and progressive. 

As with osteogenesis imperfecta, the only way you can die from osteoporosis is from complications with a fracture. And while it is difficult to treat, it is not so impossible that the most brilliant mind in the Underground wouldn't be able to do anything about it. It would be easy to hide in the early stages, but as it advances, it would become harder and harder to hide, which is something Papyrus would notice for months.

So we can see that Sans does not have osteoporosis. Sorry, meme world!

https://www.sciencedaily.com/releases/2015/11/151108084919.htm

-Arthritis

-Osteogenesis Imperfecta

-Osteoporosis

-Osteosarcoma

-Osteomyelitis

-Acute

-Chronic

-Paget's disease of bone

Osteosarcoma, the third "osteo-" on this list, is more commonly known as bone cancer.

Osteosarcoma is, without a doubt, chronic. And while survival rates continue to go up due to advancing technologies, it still sits at 30 to 80 percent (the chances are probably worse for Sans because of his HP), depending on how early the cancer is caught. And as a society, we all know that any cancer under a 100 percent survival rate is a cancer that needs, that asks to be beaten.

Is it noticeable? Can it be treated? Those can be answered with a big fat IT DEPENDS. If the cancer has affected an arm or a leg, it would be very noticeable, but a bone like the ribs, the clavicle (collarbone), or the scapula (shoulder blade), could be relatively easily hidden by, say, a few layers of clothing or a hood. And treatment depends on the cancer's stage, available technology, and the patients' needs and desires.

Since there is nothing about this that gives any indication that "no, Sans definitely does not have this", this looks like the most likely culprit so far. But just to make sure nothing else is a likely candidate, let's continue down the list.

https://www.mayoclinic.org/diseases-conditions/osteosarcoma/symptoms-causes/syc-20351052

https://www.stjude.org/disease/osteosarcoma.html

-Arthritis

-Osteogenesis Imperfecta

-Osteoporosis

-Osteosarcoma

-Osteomyelitis

-Acute

-Chronic

-Paget's disease of bone

Osteomyelitis is when a bone becomes infected. Symptoms include a fever, chills, nausea, and swelling and pain at the infection site. (It's something I use in my stories whenever I want Sans or Papyrus to be sick, wink wink.)

When untreated, it is progressive, but it is pretty difficult to ignore simply because of how painful and weakening it is.

It can be hidden from others at its earliest stages depending on where it is, but eventually Papyrus would definitely notice Sans' pernicious fever and chills, and would most likely carry him all the way to the hospital. Is it fatal? It can be, but not in most cases. 

Treatments such as removal of the infected bone, antibiotics, and even draining the bone of the bacteria are available, making this the most treatable of all the conditions we have. In addition, osteomyelitis is definitely acute. It is possible to go home and look at your foot and go "oh crap, my bone's infected, guess I'll head over to the doctors, get treatment, and go back home and move on from this". Okay, maybe not like that. But you get the picture. 

Yeah...Sans DEFINITELY doesn't have this.

https://www.medicalnewstoday.com/articles/178819.php

https://www.mayoclinic.org/diseases-conditions/osteomyelitis/symptoms-causes/syc-20375913

-Arthritis

-Osteogenesis Imperfecta

-Osteoporosis

-Osteosarcoma

-Osteomyelitis

-Acute

-Chronic

-Paget's disease of bone

Paget's disease of bone is a disease that interferes with bone destruction and regrowth. Your bones don't normally just add on. Osteoblasts add new, stronger bone, while osteoclasts take away bone that is usually old and weak. However, in Paget's disease of bone, the osteoblasts are unusually active, which causes bones to become fragile and misshapen. 

It is chronic, and slowly but surely progressive.

However, there is no way you can possibly die from Paget's disease of bone or even suffer ill health effects that spread beyond the affected bone. And while not easily treatable, it can most certainly be helped by medicine that helps to regulate bone growth. In addition, there is no way it can be not easily noticeable, as a hallmark of this disease is unusual changes in bone structure. Also, it normally affects men in their 40's or older, and we know for a fact that Sans is not forty.

https://www.mayoclinic.org/diseases-conditions/pagets-disease-of-bone/symptoms-causes/syc-20350811?utm_source=Google&utm_medium=abstract&utm_content=Pagets-disease-of-bone&utm_campaign=Knowledge-panel

https://www.medicinenet.com/pagets_disease/article.htm

So the culprit must be bone cancer. After further research, I discovered a likely offshoot of bone cancer called Ewing’s sarcoma.

Ewing’s sarcoma is a type of bone cancer that is almost eerily specific. It is almost exclusive to males around the age of 20, which is a good bet of what Sans is throughout “Misery”. Ewing’s sarcoma also has a grim life prognosis compared to other types of bone cancers. Normally, the survival rate is 80 percent if caught early, but for someone Sans' age, the life expectancy for Ewing’s sarcoma is a tragic 30 percent. And with someone with Sans’ condition, that percentage would most likely be much lower.

Again, it would be progressive, but easy for Sans to hide from Papyrus, at least in the early stages. 

Now, there is one iffy part of Ewing's sarcoma; treatment. Despite it being a life-threatening disease, there are multiple effective treatments. This would include surgery, which is impossible if we're assuming Sans would have it where he could hide it, like his ribs or his clavicle.

For radiation therapy and chemotherapy, they are both effective treatments.

But put yourself in Sans' shoes for a moment. Think about it. Both chemotherapy and radiation therapy can and will give you side effects that will greatly decrease your quality of life. But most importantly, they would put Papyrus- the most important person in your life-through watching you go through them. 

Alphys would then have to make the heartbreaking decision to send Sans home to die.

And that, my friends, is the crux of "Misery".

https://www.mayoclinic.org/diseases-conditions/ewing-sarcoma/symptoms-causes/syc-20351071