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crippled-punk-guy · 7 months

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Happy rare disease awareness day!

Today I would like to raise awareness for myself and other people who have a rare disease or health concern that hasn’t been officially identified.

There’s a very long and convoluted way my doctor decided to word this because my insurance refuses to allow me genetic testing to confirm, but in laymen’s terms I have a clinical diagnosis of classical like Ehlers Danlos Syndrome.

Classical like or type 2 EDS behaves very similarly to hypermobile or type 3, with a couple extra symptoms and a few different manifestations.

Type 2 is caused by having duel mutations of the tenascin X gene, and some doctors believe type 3 may be caused by having only one of those genes mutated.

Because of the requirement of having both mutations this sub type is markedly much rarer than a couple of the others, estimated at roughly 1/1,000,000. It’s very difficult for people who have the symptoms of this type to be taken seriously as most doctors just think it’s a more severe version of type 3.

Classical Like Ehlers Danlos is a distinct type because of fat tissue and distal joint involvement.

Most people who have type 2 have bracydactyly, a deformity of the distal (small finger and toe) joints. Bracydactyly means that my fingers appear shorter than usual, the joints in them are deformed and does not allow for a full range of motion, for me personally mostly my thumbs are affected. I am missing nearly half of my thumb joint that connects to my hand, and my pinky toes are missing a joint entirely. This makes it so that any time I try to hold something my thumbs are essentially forced out of their natural position and have to partially dislocate. I can not use standard forearm crutches anymore because of this and have had to switch to platform to preserve my hand function. I also sometimes wear thumb braces if it gets to that point.

When talking about fat and tissue involvement we must touch on subcutaneous spheroids. Many people with EDS have something called piezogenic papules of the heel, small white lumps that become visible when putting pressure on the heel. Imagine having that but in your entire body. In EDS2 patients the following process occurs:

1. Our bodies already struggle to pump blood to the very small areas of our body, this includes the very small veins that run through the layers of fat.

2. When the blood supply gets cut off to these areas the EDS2 body responds by calcifying the fat that is no longer receiving blood flow.

3. This causes the formation of subcutaneous spheroids, very hard lumps that are partically anchored down but have some movement.

I’m sure you can imagine this is extremely painful, especially when they form in areas such as the crotch or armpit. There is nothing to be done other than gently massaging them until they pop in the least painful way possible. If you allow them to build up you will have what happened to me a couple years ago which led to realizing I have EDS, my entire calves were rock hard with nodules that a physical therapist had to work out over the course of four months. They can and will merge to make a larger one, locking in nerve endings. And no, losing weight isn’t necessarily the solution because if the fat around them gives away they will pop even more dramatically (at least for me personally). The only thing I have found that helps is prevention, massaging the areas they typically form in and using a tens unit if one has already formed. Placing the electrode directly on top of it and very slowly increasing the intensity is the only way for me to get rid of them without extreme pain. Also, they can pop randomly on their own. This is very jarring and extremely painful. And is one of the explanations as to why I randomly bruise.

There are many other ways EDS affects my life, but I would like to take some time to acknowledge health issues that are not identified.

I have a leg deformity. No diagnosis, no known cause. It just happened. When I was very little a doctor noticed it and said it was nothing to worry about, that I would grow out of it.

Well it turns out that is in fact not how any of that works. As a child I had such a minor deformity that it may have been able to be fully corrected if I was given leg braces, but doctors don’t want to admit you need something like that until it’s too late.

When I was around 15 I saw a rheumatologist who explained to me exactly why my legs look the way they do and what internally is happening that is actively preventing it from ever being fixed now. My hips either were what caused it or have now formed in a way that my legs will always be in this position, slightly out turned at the hip joint and again at the knee, causing my legs to appear splayed when relaxed. Also, one leg is longer than the other. The longer one has about 2 inches on the other, so it ended up supporting what the other could not. Because of this I am simultaneously pigeon toed and slightly bow legged, so one leg points in and the other out. Adding on that EDS makes your joints more loose, the doctor told me it seemed like they were both just making each other worse and she recommended I just try to not walk when possible.

No one really knows if the deformity is separate or because of EDS, but either way I live with both. I live with the knowledge that 1. I may never get genetic testing to figure out if it is actually type 2, most doctors don’t care enough to learn about anything other than type 3 if they know anything at all. And 2. I may never get to know if my legs could’ve been made better, I still have enough walking ability to get by but there’s also nothing saying it won’t get worse. We don’t know. And I’ve seen enough doctors to tell you they don’t care about knowing. My primary is amazing, but every specialist she tries to send me off to just gives me the run around and is like “well you *can* walk *some* so clearly it’s fine” instead of acknowledging that it is in fact not at all fine actually and I would appreciate being helped if there’s any to be had.

This is long and proofread slightly but I may have missed something grammatically or spelling wise.

Disclaimer: this is not at all an exhaustive list of either EDS2 or my deformities and how they affect my life. There are many more symptoms to both I either did not mention or do not feel comfortable mentioning. If you believe you may have any of the Ehlers Danlos types please seek out a doctor who is knowledgeable in that area.

This rare disease day, I want to remember and acknowledge those of us who never got our answers, and those of us who answers do not exist for.

There are 13 identified types of EDS, possibly a 14th. The most common (type 3) is estimated to effect 1/300. The rarest type (type 14) is known to effect 4 people in the entire world.

There are people who don’t even have a hashtag to post under, there are disorders and conditions that have only 1 known person effected ever.

How do you live your life with such a debilitating condition without even getting to know what it’s actually called? And why is it considered acceptable for the medical community to just push us aside instead of looking for the answer?

My EDS was identified as almost for sure being type 2 by a physical therapist who specializes in hyper mobile disorders. And yet I am still diagnosed with “hypermobility spectrum disorder with musculoskeletal involvement” which is a real fancy way of saying hypermobile EDS (I will explain why this language is used in a later post today or tomorrow).

When you change the language you use you change the meaning, and when talking about someone’s health knowing what is going on in your own body is very important. Imagine if you were diagnosed with something but they told you they’re going to call it something very different just because it’s easier. That is life for many many chronically ill people. A doctor can directly tell you it’s one thing and then put something completely different in your chart just because doctors and insurance are not on our side in most cases.

This rare disease day, remember the diseases and disorders that are literally written out of your history because it’s easier than having to admit what’s actually going on.

Leave an offering today to Hephaestus.

#eds #classical like eds #type 2 eds #chronic illness #disability #wheelchair user #ableism tw #medical gaslighting #genetic disorders #hypermobility spectrum disorder #chronic pain #hsd #rare disease awareness day

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mysteriouslybluepirate · 11 months

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Thank you for offering your askbox. I've been thinking that Izzy being just a side character whose story wasn't main plot thread makes even better proof that not everything was well planned? If I was a writer and this would be easily the most discussed topic about the finale, I'd reflect on storytelling decisions I made. There's a good reason why Izzy's fate overshadows everything despite that he wasn't the point of the show.

(Post posted 10/31/23) Feel free to comment below if you agree or disagree, we're all here for discussions.

Thank you so much for this amazing question!! [If you're seeing this and want to discuss some aspect of S2, or my thoughts on OFMD overall, SEND ME AN ASK! I love doing this]

TLDR: Vague characterization from historical records means Jenkins is free to bend history without a lot of guilt. During early days of casting and during scene changes Jenkins got inspired by Con's audition tape. Con was told to play this shit as a Jesus/Judas relationship. An amazing performance in S1 keeps the character relevant in fandom spaces in the hiatus, and in Jenkin's mind for S2. The S1 season finale accidentally reveals a really interesting dynamic in Ed/Izzy's relationship. [Speculation from this point on] Jenkins feels like he needs to explore, with little plans to fully explore it. Fleshing out both Ed/Izzy abuse and love.

Jenkins realizes 'Oh shit, Izzy wasn't supposed to be this' midway through S2. But he still follows his original plan in killing him off, because he's not needed for the story in his outline, leading to him accidentally killing off a character as they're growing and healing. Leading to what some consider a move SO off-brand for the show, they are leaving the fandom.

[*Tin Foil Hat On*] I expect the original cut of S2 to include more scenes of the crew. I bet for every other Izzy scene, we got a crew scene. So when 'extra' not plot-relevant scenes had to get cut, they kept the Izzy scenes due to Izzy's stable arc, the fact that he'd die at the end either way and Con's amazing performance.

EXPLINATION AND DEPTH BELOW! It's a long one. A lot of this post will be speculation, interviews from Jenkins, and highly dependent on if you were in fandom between seasons 1 and 2. If you need me to hunt for sources, I can do that for you.

I'll separate everything into a chronological timeline as much as possible.

Before we touch on why Jenkins wrote Izzy to stick out in the story, we need to assume how he outlined this entire show.

Pre Con O'Neill:

I am of the personal belief that Jenkins likely wrote out an imagined arc for Ed and Stede. Including a lot of cool set pieces, fights, etc. for the three seasons he wanted vaguely based on the real lives of Stede Bonnet and Edward Teach(watch a YouTube vid documenting their history, it's a wild ride) turning it into something explicitly romantic. This is easy enough to do, as most of what we know about them was written YEARS after their deaths.

Next was filling in the cast. This is where we get our crew, mostly characters Jenkins made up, as very little is known of the men either sailed with.

Izzy Hands being a pirate under the age of 18 whose notable actions with Blackbeard include- Captaining his own vessel, running a ship aground, being Blackbeard's first mate, and getting shot by Blackbeard maybe on accident.

[THEORY] So. If you're any writer you see that and think 'cool a side character we know almost nothing about'. You slot him in as being Edward's one thing keeping him to the pirate lifestyle. Not necessarily romantic, but a serious Boss/underling relationship. This is a bit of how Izzy was written in S1 UNTIL-

Con O'Neill is cast as Izzy.

In interview, Jenkins has admitted that Con's audition tapes influenced how he wrote Izzy. As a writer, this shouldn't necessarily be ringing red flags. But he has gone on record as admitting to changing the script before shooting to suit Con. IN SEASON 1. My guess is Izzy at the end of episode 10 was meant to be more of a side character. Another Frenchie, or Wee John, who serves their purpose and then gets pushed to the side by the plot.

But at some point, Jenkins wrote how important the dynamic was between Ed and Izzy. Describing Izzy/Ed to Con before filming S1 of a 'Jesus and Judas' relationship like in Jesus Christ Superstar.

If you tell a (then closeted) queer actor who has been playing queer roles since the 1990s that his leather daddy character was having a Jesus&Judas JSC dynamic in a TV show that respects and celebrates queerness? 🤩 MY GOD.

[Speculation] That's how we get an Izzy Hands who is watching the man in front of him slip away, trying to dig his heels in. Hell, if I were Jenkins, I'd be adding a few more lines for Izzy to be pissed just to see Con have fun in the role. Let him be mad. Let him be in the background of scenes just glaring. Let us see a man slowly lose something he's built up his whole life.

[As mentioned from Comic Con- From Con O'Neill] This was important for me to bring up as Jenkins could have said 'henchman' but he didn't. Hell, when Taika and Con did hair and makeup they'd listen to the JCS cast album. It was a choice on both their parts.

[ovservation from here on out] Con plays it up, and a lot of queer fans saw this and grabbed hold of a man so desperate to keep the man he loved close that he sacrifices almost everything for it (Izzy also signs the Act of Grace to get Ed out of there).

Izzy, in a show full of openly queer people, is still on the fringe of society. SO MANY queers saw this and said 'OMG me'. ME INCLUDED. With a super supportive actor who genuinely is respectful of the fandom? Of art, and fic and meta? The Izzy 'Canyon' became so loyal because Con is a Queer Elder we didn't know we all needed in our lives!

Jenkins accidentally wrote into what could be an amazing story of a queer character living in a homophobic society where he learns to open himself up. All without ever writing a 'coming out' scene for Izzy. Jenkins knows this. Hell, since S1 Izzy fans have been telling him how cool that type of arc would be.

Now here comes the issue of where to take a side character, when you have loose plans for them.

S1 IS TIGHTLY WRITTEN ONTO ITSELF... S2?

Something we might forget now is HOW tightly written Izzy's falling out with Ed is tied into Stede and Ed falling in love. Beat per beat, Izzy is shoved away as Stede takes his place. That's really fucking smart. So smart, it was planned in the writer's room. The fact that some took it as romantic, that Ed could ever really love him back? Well...this is where Jenkins had a decision to make.

So he dips his toe. Let's make Ed even more violent than at the end of S1ep10. Let's include the bit where Blackbeard shoots Izzy Hands. Let's have Izzy confess his love for Ed and have it not be enough for Ed to change his mind. Let's show Izzy rising like a phoenix reborn after a failed suicide attempt where Izzy chooses to mutiny on Ed to protect the crew. Let's see Izzy growing. Because Jenkins loves Con's performance. Everyone in the cast enjoys him as a person. Let's give Izzy one last hurrah.

Jenkins knows this character meant a lot to Con. It's obvious in the way Jenkins recently confessed he told Con about Izzy's death midway through shooting. Sadly we likely will never be told when Con was told. But imagining Con filming the AMAZING character change of S2eps 1-2, then AFTER being told Izzy would die anyway? Oh. I wouldn't be alright. Not after all his fans had spent the last year telling him how much seeing a character like Izzy 'being accepted because they are worthy of love'.

This is the 1 thing that fucks me up. Not telling Con until midway through shooting, Versus his belief that writing Izzy's death was a fitting way to end his story. BOTH CAN'T BE TRUE. Right? If Jenkins felt the need to take con aside and go grab a meal to announce Izzy was dying but then market the ending as a 'Good Idea'. Then...What? If Con felt it fit the character, then he would have likely guessed Izzy would die. But that wasn't the vibe in the fandom at the time. It feels like a decision Jenkins made this season.

Because yes, some general audiences predicted that Izzy would die. But when your core fanbase for a character don't expect it, you didn't plan the death correctly. Fuck, I thought Izzy was trying to RECOVER this whole season. Not that Izzy was hiding how hard he was struggling. That's not a good sign when I've ALWAYS called Izzy as some brand of suicidal/depressed.

[Quote from Jenkins Entertainment Article: Oct 26 2023] 'What's the best journey we can give him(Izzy)? And what's the most interesting thing we can do with Con, who can do just about anything?'

That is not the quote of an author who has planned everything out. That's a writer who knows points A and E and is fighting to find everything in between.

The Fly in My Ointment

There's a point most writers know when a character or story slips out from under you. You didn't mean for this to happen. Hell, I write Scene by Scene outlines. My stories change. When Izzy Hands' growth arc became the most interesting part of S2, Jenkins had a choice.

How far was he willing to bend his idea to keep a character that wasn't 'essential'? Not that fucking far apparently. Because for some reason, Jenkin's labeled Izzy in his mind as 'Blackbeard' and tied Ed and Izzy's fates together. Ignoring how this season Izzy died to separate his old life with Ed from his new life with this crew.

Your question poses it perfectly- If I was a writer and this would be easily the most discussed topic about the finale, I'd reflect on storytelling decisions I made. There's a good reason why Izzy's fate overshadows everything despite that he wasn't the point of the show.

That's a trick they teach you in some writing podcasts. That in the end, you are telling one story. You can have twenty side characters and a romance arc, but in the end, you are telling one story. Each side character is going to show what happens when you fail or succeed at the central thesis.

What do we have in S1? What does Frenchie sing to set up where our story STARTS-

"A pirate’s life, [it’s] short but nice,” -“we won’t live long,” AND “to death we go, a certain death we go.”

Our characters expect a short simple life of what most pirates EXPECT. In my mind, this story has ALWAYS been about survival. From the extravagance of Stede's ship, and a crew ready to throw him overboard, to the barebones Shark eats Shark type of survival described in Ed's own fleet. OFMD is about living in a world that doesn't want you there. About surviving and thriving. About these two men from different worlds coming together and forging a life of kindness for them and for their family.

Saying fuck you, I'm here, I'm still alive, and I'm going to THRIVE. I deserve kindness, happiness, love, and a fully lived life. I deserve to spend my short time on this Earth happy.

IN S2? The ONLY character that matches this thesis is Izzy. After scenes of Izzy struggling. Of finding himself. Of crawling up from his own personal hell, Izzy dies. He dies from a random bullet wound in the same spots that didn't kill Stede or Ed in the previous season. Breaking the one established rule for wounds in this universe that the left side is the safe side so that Izzy can die.

Even if Izzy spent this entire season wanting to die, he tried to live. For a few days after a breakup of over 20+ years of casual intimacy. Of a bond where Izzy was the murderer, the brawn. The dangerous right hand. Where Izzy dying meant not just his death, but likely that of Ed. Given the man's constant depressive moods, crews that didn't like him, and reoccurring suicidal tendencies. Ed didn't need Izzy Hands anymore. Ed had Stede now. He was ready to finally leave Izzy for good. What will Izzy Hands do now?

He gave up. He tried to move on. He listened after being told he was too rough, too loud, too mean. He tried. He tried to survive this new way of life surrounded by people who supported him. But he was tired. After so many years of putting up a mask, tearing it down was too much work. So he wanted to die. In the end. Izzy died in the arms of Edward surrounded by his family.

Buried on a plot of land Jenkins has already told us Stede and Ed will leave when things get boring. Left behind like the corpse of a pet the family has forgotten. Buried without his ring and cravat, items Izzy is only seen without when he's naked. Without the prosthetic gifted to him by a family that cared about him.

Izzy wasn't mourned for more than five seconds, before Stede and Ed were making jokes on his fresh grave, and then the episode moves on to a wedding.

RIP Izzy Hands- a man who loved more than he was ever loved in return.

Was this the right message? FUCK No. But for those of us who believed that theme of queer survival and community- We saw framing Izzy's death like this as a fucking betrayl.

Izzy Hands isn't buried with his most prized possessions- they're left out to be stolen or rot in the front yard. With only one man crying over his death and a silent funeral. He leaves this world without more than a 'he was intense'. Which...isn't great coming from the man Izzy loved for most of his life.

The reason why we're mad about Izzy isn't that it's Izzy. It's that when we boarded this flight we were given a set of rules to follow. It's a comedy about men falling in love on a boat that sometimes gets serious. That's it. To watch a character start to grow only to die for NO PLOT SPECIFIC REASON. Is insulting. If your death has no tie to the narrative (sacrifice or it comes with a revelation) it's a death just set up for shock. Izzy and Ed could have had that deathbed confession talk at the start of episode 7.

A REASON WHY I'M MAD BEYOND THAT SPECIFICALLY. [Very Personal Gripe]

A SALUTE TO CON O'NEILL -AGAIN!

I had the privilege of hyper-fixating on this show from the entirety of S1 ending to S2 beginning. During this time I explored the catalog of Con O'Neill's work on Tumblr under the tag 'Conography'. I watched this man play queer roles since the 1990s. Genderqueer/somewhere on the Trans spectrum, Gay, Bi. This man loves to play a queer story, even if it's sad. If it's tragic. He will breathe new life into their lungs and express their moments of Joy. Of love. Of community.

After the filming of S2 at a con, Con he felt comfortable publicly coming out due to the love and support he felt from our fandom. Do you know JUST how crazy that is? That Con KNEW Izzy was dead, yet he loved our fandom so much he let himself be vulnerable, and come out as queer? It's fucking INSANE to me, and shows just how much this show means to him.

He's not just Queer. He's a Queer fucking elder whose been protective of this entire community since S1. This 57-year-old man has proudly stood up in the name of Trans rights this entire time. Treating everyone, but especially Trans Izzy fans with so much fucking respect. Trans Izzy is a common headcanon partially because of how comfortable people feel knowing they won't get harassed because they interpret Izzy a certain way. That trans people feel at home seeing themselves as a misunderstood character with a chip on their shoulder.

I'm pissed for every in universe thing listed above AND NOW THIS. Because our Queer Elders are dead. There is a generation of Queer people we can never get back. They died from a mix of society pressuring these people into the closet or an early grave. Of disease running wild in communities unchecked. Of media ruining the careers of anyone who dared to come out. To see Con O'Neill So Fucking Happy and having it cut short because Jenkins thought Izzy was better dead than being an actual background character makes me see fucking red.

No. Jenkins probably didn't know Con was Queer when writing S2. But I'm assuming he still saw how happy Con was at Izzy fans before S2 was written which still makes it feel shitty.

Sure. Give Izzy all the amazing speeches about family and belonging and rip that right from his hands as soon as Izzy realizes it's something he might want for himself. Let's have Con O'Neill say all the prominent lines that are a blatant metaphor for why the Queer community needs to stick together.

Izzy's arc isn't just overshadowing the conversation because it was mismanaged and feels unplanned, it also just feels cruel to the central arc of this series. Add that to an actor who was so vocal about loving this community, it feels pointed to give him a tragic ending.

Jenkins doesn't need to consider why people hated this finale. Because there are SO MANY Ed/Stede fans who just don't care. They put Izzy in the box with every other side character and decided to put their effort into the protagonists and point and laugh when we suffer. Jenkins won't rethink anything because he can just say the 'Izzy community was passionate and are sad their favorite died'. Ignoring how this season made Stede into a shittier, less sympathetic captain and gave Ed an interesting arc only to give up before the finish line.

#Now. I didn't bring up how viewing Izzy as being useless post disability ALSO pissed people off but there are posts everywhere about that #physical disability is not my place so I don't overstep #THE WAY IZZYS DEATH WOULD WORK SO MUCH BETTER IF HE STEPPED INFRONT OF A BULLET MEANT FOR STEDE #Or that post floating around of Ed getting shot for Izzy. Showing that yes. Ed cares. that they're both fucked but are working on it #If most of the fan base hates the *implications* for S3 thanks to this ending it wasn't the right move #GOD I DIDN'T EVEN TALK ABOUT THE DAD/MENTOR THING. Ah well #it's taken me 3 hours to type this up. I'll add later if it needs be lol #ofmd s2 #ofmd season 2 #ofmd s2 spoilers #izzy hands #ofmd s2 finale #ofmd critical #ofmd meta #omfd analysis #israel hands

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