#also i guess people with actual STDs don't deserve kindness either

[megkuna]

ngl the impression i get from a good chunk of online leftists is you all just want to find groups you can bully but feel "woke" about

[astudyinfreewill]

tbh i get queer fans being mad/sad about kavinsky being killed off in that yeah, bury your guys can always be upsetting no matter the character. but it's weird to me when people go the 'he didn't DESERVE it blah blah' route because like, that has nothing to do with the trope. like i agree with queer characters always getting killed off being exhausting, but i don't get people going hard for this particular character lmao

hmm i… sort of agree. i guess i can understand fans being sad about kavinsky being killed off if they empathise with him, even though personally i just… can’t imagine relating to a character like that. but i honestly, genuinely don’t believe he’s an example of Bury Your Gays. it would be BYG if kavinsky was the only queer rep in the books, or even he killed himself specifically for being gay… which, no matter what people argue, he didn’t. but rather than give my opinion on it, i’m gonna take this chance to go through the trope systematically and explain why the shoe doesn’t fit. it’s meta time!

Why Kavinsky Dying is Not “Bury Your Gays”

[All quotes are taken directly from TvTropes, though the emphasis is mine.]

The Bury Your Gays trope in media, including all its variants, is a homophobic cliché. It is the presentation of deaths of LGBT characters where these characters are nominally able to be viewed as more expendable than their heteronormative counterparts. In this way, the death is treated as exceptional in its circumstances. In aggregate, queer characters are more likely to die than straight characters. Indeed, it may be because they seem to have less purpose compared to straight characters, or that the supposed natural conclusion of their story is an early death.

Kavinsky is never viewed as “more expendable than his heteronormative counterparts”. If you see Kavinsky as simply Ronan’s foil, then the reasoning doesn’t apply, because Ronan is gay himself, so he can’t be a “heteronormative counterpart”. However, Kavinsky apologists like to latch on to Gansey’s “We matter” quote to prove Kavinsky is treated as unimportant – but that’s a fallacy for several reasons. First, you’re taking Gansey to speak for the author, or for objective truth, when Gansey is one of the most unreliable narrators in the book, and his world view is extremely biased. Secondly, Gansey isn’t Kavinsky’s counterpart. Kavinsky is an antagonist, so you have to look at what happens to the other antagonists – his actual heteronormative counterparts. And, well: they pretty much ALL get killed off. Not just that, but they often get killed off in a way that does not have the emotional/narrative impact implied in Kavinsky’s death. By that reckoning, he gets the better shake. Additionally, we get 4 heteronormative villains killed off - Whelk, Neeve, Colin, and Piper. So in the series, queer characters are not more likely to die than straight characters (even among the protagonists, Gansey and Noah are the ones who “die”, where Ronan and Adam do not).

The reasons for this trope have evolved somewhat over the years. For a good while, it was because the Depraved Homosexual trope and its ilk pretty much limited portrayals of explicitly gay characters to villainous characters, or at least characters who weren’t given much respect by the narrative. This, conversely, meant that most of them would either die or be punished by the end. 

This is not applicable to TRC, as portrayals of explicitly queer characters are not limited to villainous characters; Adam and Ronan are both explicitly queer and they are treated with huge amounts of respect by the narrative. So Kavinsky isn’t being killed for being the odd one out/the Token Evil Queer; plus, there are other reasons why he doesn’t fit the Depraved Homosexual trope (while sexual molestation is a part of this trope, TVTropes encourages you to “think of whether he’d be any different if he wasn’t gay” – and Kavinsky wouldn’t. Not only because DHs are usually extremely camp while Kavinsky’s mannerisms aren’t particularly queer-coded, but also because he is not shown to have any more respect for women than he does for men, and his abuse would look the same if he was straight).

However, as sensitivity to gay people became more mainstream, this evolved into a sort of Rule-Abiding Rebel “love the sinner, hate the sin” attitude. You could have sympathetic queer characters, but they would still usually be “punished” for their queerness in some way so as to not anger more homophobic audiences, similar to how one might write a sympathetic drug addict but still show their addiction in a poor light. 

Again: Neither Ronan nor Adam – the two sympathetic queer characters – are punished for being queer, hence subverting this form of the trope.

This then transitioned into the Too Good for This Sinful Earth narrative, where stories would tackle the subject of homophobia and then depict LGBT characters as suffering victims who die tragic deaths from an uncaring world. The AIDS crisis also contributed to this narrative, as the Tragic AIDS Story became its own archetype, popularized by films like Philadelphia. 

Okay, this is DEFINITELY not Kavinsky’s case. Kavinsky’s death isn’t specifically connected to being gay (e.g.: a hate crime or an STD), and he’s never depicted as some innocent suffering victim. As for the “uncaring world”… eh. Kavinsky may not have a valid support system, but that’s just as much by choice as by chance - and when Ronan extends a helping hand and tries to save him, Kavinsky rejects it. Too Good For This Sinful Earth is definitely not in play. 

The only trope that kind of fits the bill is Gayngst-Induced Suicide… but only on the surface. As TVTrope puts it, Gayngst-Induced Suicide is “when LGBT characters are Driven to Suicide because of their sexuality, either because of internalized homophobia (hating themselves) or experiencing a miserable life because of their “deviant” gender or sexuality: having to hide who they are, not finding a stable relationship, homophobia from other parties, etc.”. Kavinsky certainly has quite a bit of internalized homophobia, but he is absolutely not experiencing a miserable life because of his sexuality – i.e. he’s not being bullied or taunted or subejcted to hate crimes. He doesn’t have to hide who he is: his parents are effectively out of the picture, his cronies worship him, and he constantly makes gay jokes to Ronan and Gansey. As for “not finding a stable relationship”… well that’s not exactly the problem, is it. He’s not looking for a stable relationship – he’s pursuing Ronan specifically, obsessively, through stalking and abuse. So even this trope is not applicable. 

And then there are the cases of But Not Too Gay or the Bait-and-Switch Lesbians, where creators manage to get the romance going but quickly avoid showing it in detail by killing off one of the relevant characters. 

Once again this is not the case with Kavinsky, as 1) there was no romance going between him and Ronan, and 2) he is not killed off before the nature of his obsession with Ronan is revealed – he gets the chance to both admit (sort of) he wants Ronan, and to confront Ronan about his sexuality, to which Ronan admits that yes, he is gay, but he is not interested in Kavinsky. So, there is no But Not Too Gay nor any Bait-and-Switch here. 

Also known as Dead Lesbian Syndrome, though that name has largely fallen out of use post-2015 and the media riots about overuse of the trope. And, as this public outcry restated, the problem isn’t merely that gay characters are killed off: the problem is the tendency that gay characters are killed off in a story full of mostly straight characters, or when the characters are killed off because they are gay.

This is a very good definition of the trope and why it doesn’t apply to Kavinsky: he’s not killed off because he’s gay, and he’s not killed off in a story full of mostly straight characters; TRC is definitely not overwhelmingly diverse, but 2 of the 4 protagonists are queer, giving us a solid 50% ratio (I’m not counting Noah because his “character” status is vague, and I’m not counting Henry because he came in so late, and also because his sexuality is the matter of much speculation).

For a comparison that will make it even clearer: take a show like Supernatural. Supernatural’s range of characters is almost entirely presented as straight white cis men (as of canon – despite much of the fandom’s hopes and speculation). They’ve had problems with diversity in general, with a lot of black characters dying immediately, and a lot of women getting fridged for plot advancement or male angst (a different problematic trope altogether). Now, apart from minor inconsequential cameos, Supernatural had ONE recurring gay character: Charlie Bradbury. And they killed her off for no discernible reason other than plot advancement and male angst, in a context that had elements of Too Good For This Sinful Earth (Charlie being a fan-favourite, ~pure cinnamon roll~, being killed by actual nazis, who historically targeted gay people). See, THAT was Bury Your Gays, AND Dead Lesbian Syndrome, AND Fridging…

However, sometimes gay characters die in fiction because, well, sometimes people die. There are many Anyone Can Die stories: barring explicit differences in the treatments of the gay and straight deaths in these, it’s not odd that the gay characters are dying. The occasional death of one in a Cast Full of Gay is unlikely to be notable, either.

…But that is not the case with TRC. As I’ve said above, there are no explicit differences in the treatments of the gay and straight villain deaths. Kavinsky’s death is not Bury Your Gays; it’s Anyone Can Die – even a protagonist’s foil who has magic powers and is present for most of the book.

Believe me, I would not be cavalier about this. As you rightly said, queer characters always getting killed off is exhausting, and as a bi woman myself, I am deeply affected by instances of Bury Your Gays. When Supernatural killed off Charlie, I wrote a novel-length fix-it fic and basically stopped watching the show – a show I had been following, flaws and all, for 10 years. I don’t take it lightly. But Kavinsky’s death isn’t Bury Your Gays, nor is it homophobia. Sometimes, a character death is just a character death.

[eds-zebra-warrior]

2021 Ehlers Danlos Society Awareness Month (Day 18 Prompt: Words to Parents)

I am interpreting this prompt in two different ways so will address it as such starting with explaining how my parents are with my condition and then words to parents of kids newly diagnosed or who present with a wide array of symptoms.

My parents were awesome prior to my diagnosis. There were things I wish they had known and even now wish they knew but I almost always had that support system some don't have. Sure there were a lot of times I would tell my mom I was having chest pain or my heart was pounding where she would say “It's probably just anxiety” and of course when anyone has a headache, runny nose, stuffy nose, scratchy throat or generally coming down with some kind of bug her notorious saying was “It’s probably just your sinuses” which me and my dad still talk about to this day. She went decades of her life taking Sudafed every morning truly believing she just had bad sinuses to find out years later she was actually having an allergic reaction the entire time due to Systemic Mastocitosis and really needed allergy meds and since she had bad sinus issues she seemed to think anything and almost everything that someone was experiencing from the lungs lungs up, weather it be a migraine, eye pain, sore throat, coughing, going horse, runny nose, bloody nose etc. it was just your sinuses which usually wasn't the case because soon after I would test positive for strep throat, oh the times I had strep throat. I had it so often that when I got it, I started not even noticing the throat pain believing my mom that it was my sinuses but more major like a sinus infection, to go to the doctor and find I had strep again and was desensitized to the pain. Sometimes my whole throat and mouth would be covered in blisters before the pain was bad enough just because I always had strep. Occasionally it was other things like my migraines growing up I now know were from Occipital neuralgia, craniocervical and atlantoaxial instability. So she didn't always take me seriously but I have to admit, after two decades of your life being told you're a hypochondriac and your symptoms are all in your head, I started to believe I was crazy myself and that my symptoms either weren't real or much less severe than they really were.

My dad being autistic never really dealt with my health stuff very much. He just isn't knowledgeable in it and has no clue what to do so my mom was the one who did that. Though she pawned off a lot of my more serious issues on it all being on my head she was always there for me. She took me to the hospital if it was needed and knew I didn't say I needed to go to the hospital unless I really felt like death. There have been several times where doctors have tried to say nothing is wrong and send me home where she has literally refused to take me home or argued with doctors but this was mostly after my diagnosis. I kind of wish she would have done this and pushed harder when I was a kid as she very much has, I guess you would call it brand loyalty but it went further than only grocery shopping at Meijer, literally fighting with me for years about leaving Verizon because in her mind Verizon was the only company that was any good, only allowing one person to cut her hair even if it meant following her to a new job, she had a doctor she liked and stayed with him for most of my life and denied he wasn't a good doctor after an incident in high school which caused me to switch. It's hard for her to move on even if there is no progress or things start to get worse so one thing I wish is she would have done a little more doctor shopping when I was a kid.

Doctor shopping is oftentimes frowned upon at and when most people hear of doctor shopping they tend to think of it as someone who goes from doctor to doctor looking for drugs or or to sign disability papers so they can get a free ride at life but when you have a rare disease doctor shopping means something totally different and can even be so vitally important your life and future depends on it. I had so many doctors who simply invalidated my symptoms saying I was making them up for attention or had a mental illness. Many of these doctors did nothing at all but the majority of them did the exact same tests over and over. If it was a doctor outside of the hospital they did a CBC, Chem. and a 7 (Basic Metabolic Panel) which always came back normal or borderline normal therefore they deemed me healthy, slapped a psychiatric disorder on me or simply said there's nothing wrong and sent me on my way,

If I went to the hospital, they would do the CBC, Chem. 7, accuse me of doing drugs or being pregnant or when I was really little bring in case managers making accusations of child abuse that wasn't happening, then do a drug test, pregnancy test and STD testing, say the CBC and Chem. 7 were normal or near normal, congratulate me on not being pregnant, having any illegal substances in my system or STD’s, slap a psychiatric disorder on me saying they tested everything and sent me home. When I got older, lucky me, I got two drug tests, the urinalysis drug test and when it came back normal, they would come in and draw my blood assuming if I was having seizures, passing out or having heart palpitations I must be on drugs and tampered with the urine test. I wish prior to my diagnosis my dad would have had a computer and learned to use it and both my parents would have done more research. I also wish they had advocated for me better and if one doctor said they didn't know or didn't believe me, they would have moved on to another doctor because if I could have gotten diagnosed sponsor it would have saved me some permanent damage to my body that I have now and possibly spared me some of the medical abuse and neglect though even with a diagnosis you can't avoid it, especially when it comes to the hospital.

Doctors and nurses are just as lazy as everyone else. It's just like every other job where 5% of the employees do 90% of the work and 90% of the employees do 5% of the work. The ones who actually take their jobs seriously are used to the max by their coworkers and like me when I was a nurse, didn’t believe the patients deserved to suffer or pay for their staffs laziness and neglect and those are the ones who try to play superman taking on their patients and everyone else's, answering call lights that aren't theirs, bringing food to others patients, making sure they are turned or their catheters have been emptied and generally running around like a chicken with their head cut off and I can always tell who falls into the 90% who uses the 5%, carrying less about the patient as long as they get a paycheck and the 5% who look like they are about to fall over yet still giving what they don't have to make sure the patient doesn't pay for their lazy staff member.

It's very easy to tell when you have spent a large portion of your life in doctors offices and hospitals and learn how rare it is to get one of the people in the 5% as your medical personnel and watching the lazy staff you have out your door at the nurses station sitting with other lazy staff in front a computer laughing at a YouTube video their watching, gossiping and talking badly about another patient loud enough for you to hear, playing pranks on each other, one nurse who drops her pants moons another in a room of 9-11 year old little boys, The nurse who has the pediatric patient who flat lines, on bad days, it's not uncommon for this to happen 20 times in one day and at their best, at the very least multiple times a week. The patient's vitals are linked to a pager the nurse carries so if the patient's heart stops the pager will alert them yet they consistently leave the pager in the patient's bed, on their night stand, at one of the computer kiosks where nurses chart, in another patients room, in the activity room or god knows where. I've found it in the bathroom on the toilet paper mount, in the linen closet on top of some towels, you name it then this same nurse who is buddy buddy with the nurse slips away with a coworker to the activity room or to the nurses lounge for you to later walk in on them playing cards and talking bad about patients or other staff. The two nurses going through a wedding magazine, looking at dresses and hear one say “That's my room”, and the other one say “Just ignore it and let Janett get it” Yes these are true stories down to the name used for the poor nurse who was running around like a chicken with her head cut off. All experiences I have seen either in the roll of the nurse and in the roll of the patient.

I was mostly around nurses and of course you don't see doctors very often but being in a chair I have been forced to use a bedpan before and seen examples similar to this with doctors as well. Once I was taken downstairs for a cardiac ultrasound, asking to go to the bathroom before they took me down because I had my call light on to go before transport even came in my room. They told me I would only be down there 10 or 15 minutes and asked me if I could wait. They took me down there to beds of people lining the halls and I had 18 people in front of me. Well, 15 minutes turned into 4 hours. I asked multiple times to go to the bathroom and they said they don't have a wheelchair down there and if I can't walk to the bathroom I have to hold it. I even asked if they could call up to my room and have my mom bring my chair down and as gross as it sounds, I even got desperate, breaking into a sweat I had to pee so bad and asked them to wheel my bed outside the bathroom and lower it as low as it goes, and I would put my blanket and pillows on the floor and slide out of my bed onto the floor myself and they can pull me on the blanket to the toilet or I could army crawl and use my arms to pull myself up onto the toilet. They still said no. I asked earlier on if they could take me back to my room or bring a wheelchair, still no.

Eventually I told one of the nurses that I had to pee for 3.5 hours, she saw that I was all sweaty and shaking. I said if they don’t get me somewhere to pee within the next few minutes they were going to have a huge mess to clean up. She grabbed two bedpans, a small one and a bit one, said you're tiny and I told her no, use the big one, I have EDS so my bladder can stretch really far and I can easily pee 22 oz. so she rolled me into a doctor's personal office, he was in there watching a movie on Netflix on his computer, yes a full blown Netflix movie. He tried to flip the screen back to an ultrasound image really quick when the nurse stormed in with me to make it look like that's what he was doing but he fumbled around a little bit and wasn't fast enough. The nurse told him to get out so he left and I had to pee in a bed pan in his office… then spent the next few weeks having to wear diapers for bladder leaks because they let me hold my bladder so long my bladder stretched out too much from hypermobility and it folded on top of itself resulting in bladder leaks until it shrink back down. Thank you OSU. Doctors can also be extremely lazy and I wish this was something my parents acknowledged more or took more notice of and fought more for me, looked more into my rights, such as being able to call a patient advocate or fire doctors and nurses which is something I had to find out myself.

I found out I had EDS before I was even diagnosed which is what made me fight so hard to find a doctor who has heard of it. I got desperate being sick and spent years learning how to find and read medical journals. When Facebook started having groups I started joining groups to ask questions, I started going to doctors and no longer letting them call the shots. If they said they wanted to do a Chem. 7 and CBC I would say that's fine if they want to but it will come back normal and start requesting tests that aren't considered standard and that are used to test for specific conditions rather than just evaluating me for acute conditions. I started walking in and telling doctors how I felt and when they either said well we will see you in a year to see if things change or wanting to run just the basic CBC and Chem. 7 I would start saying “Could you run a 24 hour Tryptase Urinalysis”, “Could you run a gastric emptying study”, “could you run a 24 hour urine for Cortisol levels”, “could you run an ELISA”, “would you write for a flexion/extension MRI with contrast”, “What about a rotational CT” “Everyone wants to do a colonoscopy but instead of ordering that can you order an Endoscopy this time?” “I would like to get an “ATCH Stem test”, “I know you have never heard of one but if I email you the information will you order a Tilt Table Test”, “You’re doing that Aortic Ultrasound without contrast? It’s supposed to be done with contrast. Could you call up to the doctor and ask him to add contrast before you start?”

Sure a lot of doctors would downright refuse. I have gone in 5 and 6 times asking for a test and being told no, only to go in the 7th time and be told “It will come back negative but if I order this will you quit bugging me about it?” for them to order it and the test to come back positive for the condition I wanted it ordered for then they treat me like total crap to the point the office staff is mentioning about how bad he is treating me to find out he’s doing it on purpose to try to get rid of me as a patient, probably because he realized what he said was really wrong and he made himself look bad. I have learned that if a doctor isn't willing to listen to move on and find someone who will. You need to find one who is willing to run the test or even just ask if I can email them some medical journals or information about the test or showing the importance of it or why I believe it needs done, willing to learn and if I can prove my case they will order it no problem.

I wish I had someone who started this for me as a child who did the research or helped me do the research to know what tests to ask for and to find a new doctor for me if one was either trying to slap a psychiatric label on me or acted interested but simply refused to run any tests so my care went stagnant. I still wish my parents knew the ins and outs of EDS like I do and really researched it because it makes me a little nervous when a squad is called and they are stumbling over my diagnosis or saying “She has oh, that one heart thing that makes it go really fast. Oh what's it called or only naming like two of my conditions. It also scares me that one day I will be rushed in internally bleeding since things like Aortic Dissection, Carotid Dissection, Mesenteric Dissection, Iliac Dissection or Femoral Dissection as well as uterine and bowel rupture are common and can happen very suddenly in EDS that my parents may not know the common areas for bleeds or know them from most to least common so they may not know where to look or may not realize its actually internal bleeding at all until it's too late.

With all of the craniocervical manifestations I also fear I will be sent in for respiratory distress a or something else emergent relating to my craniocervical instability and my family family won’t realize its from the instability and if they do they wont know where to find information to prove this to a doctor or who the five surgeons in the US are who can operate on it so I will either end up on life support until someone gives up on finding the root of the problem which I knew all along what it was but couldn't tell anyone and pulls the plug, unable to tell anyone what is happening and advocate for myself, die before they even get a chance to hook me up to life support or end up under the knife of a surgeon who has absolutely no clue how to do the surgery I need and what modifications and special precautions need to be made for someone with EDS and I will die on the table like a few others I know or the last scenario, where I will have the surgery, wake up from it and it will be so botched that I’m one of the ones walking around with broken hardware, screws drilled into my spinal cord and paralyzed from the neck down, in more pain than I am now and the damage is too extensive to be repaired.

It's so important for the patient and their family to have very extensive knowledge of the condition since it's very complex and there are a lot of things that can go wrong at any given time. It's important to know what symptoms you are experiencing at any given time are associated with or at least the ability to know what medical emergencies are more common in EDS patients and the ability to narrow it down to 2 or 3 possibilities because most medical professionals don't learn about EDS or learn very little.

Just to put the complexity of the condition into perspective let's say you wanted to buy a book that taught you about diabetes and it was 500 pages long but you wanted to also buy a book on Ehlers Danlos Syndrome and be just as knowledgeable by the time you finish about EDS as you are when you finish the book on diabetes, there are about 15 common comorbidities of diabetes and about 250 common comorbidities of EDS. Diabetes can affect a handful of other organ systems however EDS effects every single part of the body so if you wanted to be just as knowledgeable about EDS as you would about Diabetes after reading a 500 page book about it and its comorbidities, given they were only allowed to give you more basic knowledge of comorbidities, say 10-15 pages per comorbidity, depending on its complexity and the rest on Diabetes you would have to read about 4,573 pages and that's only for hypermobile form of EDS which is broken down into trifecta so I gave 15 pages to each comorbidity of diabetes, were going to assume this book is on type 1 diabetes given there are 2 types of diabetes and 13+ types of EDS so after giving 15 pages to the comorbidities the remaining was for the condition itself. Since hypermobile is usually seen in the trifecta I had to multiple the remaining pages by three then add 15 pages for each comorbidity to get the total number of pages and even this is a very rough estimate since we need to consider how many organ systems are involved in each and how complex the comorbidity.

In most medical textbooks EDS is not listed at all or is only condensed into a few paragraphs at the very most while learning about collagen and connective tissue so if anyone in the medical field learns about it at all its very very little, so little that they can easily forget those one or two paragraphs they read our of the thousands of pages they read during medical school.

Now I know it sounds like I’m talking bad about my parents but that's not the case at all. My parents are incredible and so much better with my condition than a lot of others. They may not know the ins and outs of this but they know I am not faking anything, I’m not exaggerating, they know, especially with my PTSD, that if I go to the hospital I am pretty darn sick and know when to make me go if I continue refusing to go to the hospital. They don't want to talk about it or admit it so will often downplay the fact that death can happen very easily and at any time and I am not going to live an average life expectancy. They may avoid talking about it or downplay it but I know they know just how serious this is but they already lost their son and don't want to lose their daughter so avoid the topic.

They refused to let me be sent to a nursing home or long term care facility when we were told I could no longer live alone and brought me into their house. They help me with a lot of my needs. Heck, my mom has given me baths as an adult because I have been too sick to do so. My mom helped with training Maggie to be a service animal, making sure I made it to all of her classes, helping me teach tasks I struggled with due to being in a chair, using her commands so she gets practice and doesn’t forget what she has learned. My dad not so much. He's a softie that has let every animal we have ever owned, own him. If it were up to him to do the training, Maggie probably wouldn't even be house broken yet if I’m totally honest lol. They have taken on so much with me and though I appreciate it more than they could ever know I also feel terrible guilt surrounding all that they do.

They have to drive me everywhere. The safety of public transportation in America for people on Medicare is downright deplorable. Only one agency contracted by Medicare has seat belts for wheelchair users, most of the vans are from the 90s and not up to code. They are actually so old that someone who is disabled isn't even allowed to buy one for personal at the age the ones the state provides transportation in here in Ohio because they don't meet the safety requirements even for the minimum amount of insurance yet a cab company is allowed to purchase and insure them to transport the disabled in. Its one of those things where it's illegal for the members of the state but the rule doesn't apply to the government kind of things. Their extremely dangerous, I have been in ones in my 425 lb. wheelchair, with my112 lb. self my 17 lb. service dog in her one or two pounds of gear and a backpack on the back of my chair with my meds and maybe some food and a drink in it to take to a doctors appointment so maybe another 10 or so lbs. of weight, riding in a van and staring through the rust holes in the floor looking at t the rusty parts under the van and the pavement of the highway underneath me, hoping to god the floor doesn't give way to all of this weight so I don't fall through.

I've been in two accidents with drivers, most of these drivers smell of mamajuana when they come and one of them had a rink that had a little tiny canister on it (If I remember I’ll post a picture I secretly took of it” at a stop light he opened the little can, poured white powder into his hand, used his other finger to brush it into a pile in his palm and then snorted it up his nose. I have ridden in vans someone threw up all over, one that the door to the wheelchair lift had 3 of its 4 hinges rusted all the way through so when the driver opened the door he had to hold it with one hand because it was hanging on there sideways like a broken cabinet door with only the bottom hinge still attached, got me up the lift then shut the door, came inside and used a bungie, hooking it in a hole that it looked like was drilled into the door and then a natural hole where the raised roof of the van and the bottom of the van attaches in a hole that didn't have a bolt. It was a really windy day and on the way back, we were driving down my road, a gust of wind blew, the bungee snapped, almost hitting me in the face, the door flew open and the last hinge snapped with the door flying off and into the gutter along the side of the road. We were right down the road from my house and the driver casually said “I'll go ahead and drop you off first and grab that on my way back.” like that kind of thing happens every day or something.

I have had a driver ask to stop at a gas station and I told him that was fine thinking he needed gas. He pulled up beside the end pump and instead of getting gas we sat there for about 3 minutes when another guy in a red truck pulled up along the side of the building. The driver got out of the van and went around the side of the building where the truck was. All I could see was the back of the truck sticking, about a minute later my driver came out from behind the truck, sticking something in his front pocket, the truck left and then we left. I was hoping to god it was just his brother or roommate or someone giving him some money for lunch or something but for real, a wallet goes in the back pocket and what he had was smaller than a wallet since you couldn't see what was in his hand and most people carry plastic these days so I’m pretty sure I was just hoping it was lunch money out of wishful thinking because with along the side of the building out of view of most of the public and all it seemed pretty sketchy to me.

Anyhow my parents do a lot, they drive me to appointments when they can to try to keep me out of the appalling care of the state, they let me live with them, they provide a lot of care, cooking, doing my laundry, vacuuming and doing a lot of the things that I feel like I should be doing for them at their age. It really does make me feel extremely guilty and like a terrible person. They help with Maggie taking her out just to help me out even though I can usually take her out myself unless it's icy or snowy since she basically takes herself out lol. I can go in the yard with her in the late spring to early fall when it's warm and dry out so my power chair won't sink into the mud. They will pick up food at the store or meds for me they do a lot and with my mom having EDS too, I have seen my mom go down hill a lot since her botched surgery that left her on life support so I hate asking either of them to do anything or for help. My dad is almost 66 and my mom, though 8 years younger gets around worse than my dad does so it's really hard to need so much care and feel like I put it on them, especially when my home health aid was taken away when the pandemic started but of course most of the home health aids I had were so English incompetent's and fresh out of countries where they didn't have stoves or washers and dryers and what not, living in huts that they don't know how to use modern appliances or understand me when I relay my needs which actually made things oftentimes harder with a home health and than without one as my parents were always coming home to fixing messes the aids made too.

With all that being said, here is my advice to parents of kids with suspected EDS. Get them diagnosed as early on as possible. Do lots of research, I know it's a pain and may be a lot of work but the more you know about the condition the better. Don't stop there, learn your rights and laws around medical care and disability rights as well as techniques for advocating for your child. Get them on a 504 plan at their school so they can get the accommodations they need. Learning disabilities aren’t uncommon and the prevalence of high functioning autism is incredibly high in EDS patients so if you suspect they may have a learning disability fight for a diagnosis and have that added to the 504 plan. A 504 plan isn't just for learning disabilities, it can be for physical disabilities as well.

You don't want to caudle you child of course and many don't have a lot of severe symptoms as kids but make sure the plan accommodates for things such as food allergies, if they have POTS or low blood sugar make sure they have it in their plan to be able to bring their own food, be able to eat in class. I know on mine, I was allowed to use the teachers lounge microwave during lunch to heat food brought from home and they allowed me to use the bathroom in the nurse's office if I needed it. You can ask for things like that they not be punished for arriving to class after the bell within reason, especially if the school is large and they may have several classes on the opposite side of the building as their locker so they aren't forced to carry books for multiple classes or for them to have two sets of books, one that they keep at home and one that is in each classroom they attend class in so they aren't having to carry heavy books around or teased for having a backpack on wheels. This is one thing I would have really liked to have written into my IEP as a kid if I had been lucky enough to get diagnosed sooner. If they are more symptomatic, more prone to injury or have VEDS they may have more needs.

Again you don't want to be a helicopter parent and want them to do as much stuff for themselves as it is safe for them to do and want them to have all the experiences other children do but if gym is an issue you can request they don't participate in high contact sports or even have it put into their IEP that they can swap gym out for another elective like music, art or home economics class or in the lower grades where they may not have options for alternative electives you can ask if they have any teachers or aids available during that time frame who can create somewhat of a study hall for the younger child, helping them with their homework, studying for tests, able to sit there and let the child read a book to them and help them with any words they struggle with or even just play some educational games with them or let them play an educational game on the computer.

Some schools also offer physical therapy for kids, especially the ones with developmental delays who may not be mainstreamed and the therapy replaces gym for them. Even if your child has cognitive abilities cohesive with their age, you could see if they are allowed to join therapy with those children. With being able to do so much online now, I have heard of some requesting that on their bad days the teachers live stream them into their classroom so they can participate in class from home when needed or if the child needs a surgery or has a doctors appointment they can live stream in instead of going to school or live stream in part of the day before or after an appointment, going to school the other half of the time. You may also request extended time on homework like instead of turning it all in the next day, ask that they have the week, for example, they have to have all homework turned in from that week by the following Monday so say they are having a really bad day Wednesday and in a lot of pain or very fatigued and can only get their math homework done but not their English, science and history. They will be able to work on that homework throughout the week possibly adding the English to their Thursday homework, the science to their Friday homework and catch up on the history over the weekend so they at least aren’t failing or losing credit on homework if there are a few days a month where they are really struggling or not feeling well.

Another reason I suggest learning everything you can and really fighting for a diagnosis early is because if you work you are more likely to have a PPO insurance plan which covers a lot more than Medicare. You can get some things that Medicare won't cover out of the way in case the child has a possibility of being disabled as an adult. Genetic testing is one thing you really want to try to get done as a child as hospitals in some states like my own will not do genetic testing for EDS on adults unless they have another family member who has tested positive for one of the rarer forms of EDS.

You don't want to be in the situation I am where you have four doctors sure you have Vascular form and have been fighting to get you tested, your brother died before he had any testing, your uncle had an aortic aneurysm and died never getting diagnosed, you were referred to a geneticist who won't test you because you are under 21 and no one in you family has tested positive on genetic testing for VEDS, your mom is referred to genetic testing after coming out of a coma and being on life support after a major organ rupture that almost took her life and turned away for the same reason and your grandfather is referred and turned away leaving multiple members of the family suspected of having EDS but no one able to be tested because we are all over the age of 21 and I can’t have children nor would I want to because of the fear of passing this down to them there will not be anyone under the age of 21 to get tested in order for us to get tested so your stuck without a diagnosis. This is why you need at least a hypermobile diagnosis so you have time to fight for the genetic testing to ensure it isn’t a more serious type, especially if a doctor suspects it.

If your child has severe enough symptoms you can also get them listed as disabled under the state in order to get extra financial aid to cover medical needs not covered or special equipment like gait trainers or possibly a power chair for school and a manual chair at home It can cover the cost of tutoring and several other things insurance may not cover. If they grow up and work for so many years and end up getting worse, needing to go onto SSDI their SSDI it will also make it so that their payout will be higher if its on record that they were disabled before the age of 18.

Having a child with a complex health condition, especially when the condition is rare can be a lot of work and very stressful at times. Definitely learn everything you can and fight for a diagnosis for your child. If you suspect you may have the condition fight for a diagnosis for yourself as well. The sooner anyone starts treatment and can get regular screenings such as those for aortic dissection the more they can prevent damage early on and also prevent life threatening complications so that’s my advice to any parent out there.