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Author Topic: The Ethical Treatment of Severe Identity Disorders  (Read 6254 times)
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roger
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« on: June 12, 2015, 01:29:50 PM »

Time to turn up the heat in the debates section. This is a copy paste of what I wrote on KYM, so pardon me. But this is super interesting things to discuss.



In the whizzing development of transgender rights, the issue of what we have the right to do with our own bodies sometimes comes up. Opponents to transgender reassignment surgery often label it as disfiguring, mutilation or simply aesthetic – while those who support it, especially those with gender dysphoria, count it as a need for their mental health.

This topic is not intended to debate over the validity of transgender-based body modifications but rather those of a more extreme nature.

Body Integrity Identity Disorder – The Desire to Cripple Oneself

Body Integrity Identity Disorder (not to be confused with tumblr-grade “transabled” people) is a rare and relatively newly recognized identity disorder, which is early in research and investigation. The disorder is usually an identity disorder that starts early in life that causes the patient to believe that they are not “born correctly” and must remove a limb in order to feel normal. There are also recorded forms of desires for paralysis, blindness and deafness. As the patient ages, these feelings of discomfort become more and more difficult to manage and impose great psychological stress on the individual. Research seems to suggest that it is indeed a valid identity disorder, however the cause is still elusive.

What is intriguing in these individuals is that the desire to be disabled is so strong, that some people will go as far as to destroy their bodies in order to achieve the form that they desire. Many will go to third world countries to have risky procedures done, while others will take these issues into their own hands. Very rarely, however, a doctor may actually operate on an individual.

This practice is extremely controversial because of the permanent nature of the operation as well as the heavy implications it has on the patient’s life, as well as lives around them. Most doctors turn squeamish at the idea of an individual wanting to voluntarily destroy their bodies, and the legal and ethical complications draw doctors away even further. “What if they sue me for malpractice because it didn’t turn out after all?”

Another problem is that being disabled puts a large burden on the patient’s life as well as those around them. Out of all of the forms, Blind BIID logically has the least effect on those around them since blindness is a condition that doesn’t require dependence in most situations outside of transportation or reading, and technology is slowly closing this gap. On the other hand however, those who wish to be wheelchair bound face a myriad of issues, such as the health problems with sitting in a wheelchair all the time, and requiring help from other individuals for essentially the rest of their lives.

Unusually though, about 70% of BIID patients actually feel better after they have transitioned. These individuals feel like a massive burden has been lifted off of their lives and they can finally live the way they were “supposed” to be, while all other therapeutic techniques have little effect on the disorder itself (although it can treat comorbid conditions).

What this raises is a huge ethics issue on how to properly treat these individuals. Since the disorder itself doesn’t respond well to treatment in most cases, the progression towards more and more discomfort seems almost impossible to prevent. At the same time however, the act of crippling someone for life is something that cannot be undone and, if done to the wrong person, could end up leaving them even worse than before. However, because BIID can be extremely overwhelming, especially as the patient gets older, it may be safer to offer surgery than to require the patient to cause the damage themselves.

Should patients with BIID have an option to be able to transform their bodies as they see fit, despite the fact that they desire disability?

Additional reading:

The Role of Specific Experiences in Childhood and Youth in the Development of Body Integrity Identity Disorder (BIID)
Body Integrity Identity Disorder and Gender Dysphoria: A Pilot Study to Investigate Similarities and Differences
Effects of Psychotherapy on Patients Suffering from Body Integrity Identity Disorder (BIID)
Body Integrity Identity Disorder and Mancophilia: Similarities and Differences
Body Integrity Identity Disorder (BIID): How Satisfied are Successful Wannabes

Body Integrity Identity Disorder (BIID): interrogation of patients and theories for explanation.

Gender Dysphoria and Body Integrity Identity Disorder: Similarities and Differences (pdf download for full document)

German researcher who studies this stuff and his theories (German)
« Last Edit: June 13, 2015, 11:32:09 AM by Seto Kaiba » Logged

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« Reply #1 on: June 12, 2015, 03:58:21 PM »

Everything I know about this is what you have told me, so I'll keep my first answer rather simple.

Quote
Should patients with BIID have an option to be able to transform their bodies as they see fit, despite the fact that they desire disability?

When (or if) certain mechanical and/or biological prosthetics are more widely accessible and available, then it wouldn't matter a whole lot because they would be able to do anything that their old parts could let them do. So, sure (i.e. turn a door handle or see while driving). However, it probably wouldn't be a good idea until we're at this stage. Also ignoring the fact that someone with BIID could probably do this themselves and come up with a story for how they lost said part(s), meaning that I'll assume the question implies medical assistance.

In other words: Sure thing with substitutes, but not until then. Whoever should foot the bill for prosthetic substitutes would be another good question as well, but I'll mull it over because it's not a clear answer for me.
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« Reply #2 on: June 12, 2015, 04:08:43 PM »

I just want to add in one small thing for people to consider when answering this....

Some people are born without arms/hands, nor legs.... Nick Vujicic ... He's probably well-known by now.

As for the quoted question in Salanewt's post... maybe... but if done with the help of a doctor, it's likely recommended they understand a lot of what could happen, and sign a form. (For example, early death if you live in a wheel-chair b/c exercise could be important for heart health.)
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« Reply #3 on: June 12, 2015, 10:35:48 PM »

Coming in off-the-cuff straight out of work at the moment, I could be completely wrong, but from the information you've provided, the condition you describe is giving me some strong misdiagnosis vibes; a classic case of oversimplification and misdiagnosis of one or more likely symptoms as a medical condition while the true underlying psychological causes remain untreated. Not entirely dissimilar to my opinion of nonconventional sexual behaviors such as homosexuality and perceived transgenderism which, unfortunately for those to whom these conditions apply who are either in or out of the care of professionals in the fields of medicine and psychology, are treated as social justice issues for the sake of politics and demagoguing, as opposed to being treated for what they are: the behaviors resulting from one or more undiagnosed or misdiagnosed mental disorders.

I'd argue "BIID" is a rare, severe and disabling symptom of at least one of several low self-esteem-driven mental illnesses that involve the concept of shame, rejection, guilt, or the perception of having one or more personal defects, potentially brought about as a symptom of illnesses such as body dysmorphic disorder, borderline personality disorder, avoidant personality disorder, and/or major depressive disorder. I would confirm the patients' personal and family history of mental illness and drug or alcohol use to determine the cause before proceeding to diagnosis, and no, legislation is never the answer when it comes to the management of mental illness. One would not hand a paranoid Schizophrenic a kitchen knife during a violent episode because they may want to utilize it at the time; in the same vein, you would not give a patient with one or more low self-esteem illnesses the 'right' to self-harm, as doing so will negatively impact the patient's condition in the same way transgender-related surgery does not improve patients' conditions post-operation; an unfortunate seldom discussed facet of that particular issue.

When it comes to illnesses such as these, it can be important to take a moment when wondering: "should we do x so that y can z", as legislation especially has no ground on which to make medical determinations - rather, focus on taking the proper steps from a medical standpoint to identify and manage the causes of these illnesses. In summary, allowing individuals with mental illnesses involving symptoms of low self-esteem to self-harm does nothing to improve their condition, and is contrary to public health.

Additionally, from a law standpoint, one must consider the legal precedent that is set by allowing such behavior to be performed without repercussion. By allowing individuals with "BIID" to legally self-harm, on what lawful grounds could one deny that same right to individuals who suffer from other symptoms or behaviors, such as those who suffer from manic depression, drug users, and so on. This would contradict many state laws that forbid this and similar behaviors, such as in Wackwitz v. Roy 418 S.E.2d 861 (Va. 1992), in which the Virginia Supreme Court held in its ruling to determine the act of suicide by an individual of sound mind a common law crime, or in California, where medical practitioners are required to commit patients whom they deem as suicidal for psychological evaluation and treatment.

There are always alternate ripple-effect conditions that come associated with legislative questions like these. There are too many tangible negatives that result from attempting to create a fantastic result which is positive in theory only, and not in practice.
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« Reply #4 on: June 13, 2015, 12:40:21 AM »

BIID is, because of it's early and not well studied nature, is an umbrella term that does cover various patients. In the German link, it describes that the standard presentation of BIID actually starts very early in a child's life, no later than around puberty in most cases. In some cases, it can be as early as 4 years old. In addition, in many cases there is positive presentation of a disability to the child. Upon receiving brain scans, many of them showed a possible malfunction in their right pariatal lobe, that reflects where the affected area is.

However, BIID-like symptoms do not always present themselves this way. In one case, someone developed blind BIID suddenly at around age 16. Before, he reported, that he had no issues and was actually completely normal, and suddenly slipped to the point that he felt that he needed to use a screen reader. The individual seemed to have conflict with his parent and lived in a suppressed household - this may have triggered a similar condition that presents itself as severe BIID. This is frightening - usually BIID symptoms do not become this intense so young and suddenly, and it may be entirely possible that the episode is psychotic. This means that his attempts to blind himself may result in total blindness but not even solve the problem at hand. Bizarrely though, while clearly in some sort of unusual situation with his parent, he seemed otherwise normal and stable and was able to complete schooling without medications.

Another case states a woman who suddenly developed urges for amputation in her foot, after an injury. She damaged the foot so badly that it had to be amputated, but she was still suffering. They later diagnosed the woman with BPD.

However, many cases follow a distinct pattern - a gradual development from a want, to a desire, to a need. Some are so plagued by this condition that they feel that amputation or suicide is the only option. It is entirely possible that some diagnosis exists here. Depending on the cause, it may also have some ethical support - if it is psychological, it should be treated as such and integrate the limb back into the body image. But there is truly a neurological variant, it may be impossible to do such a thing.

While I don't agree with most of what you said, simply because of the fact that most patients with BIID tend to report feeling better after amputation, I think you bring up a really interesting point here. I've never even heard this argument before.

Additionally, from a law standpoint, one must consider the legal precedent that is set by allowing such behavior to be performed without repercussion. By allowing individuals with "BIID" to legally self-harm, on what lawful grounds could one deny that same right to individuals who suffer from other symptoms or behaviors, such as those who suffer from manic depression, drug users, and so on. This would contradict many state laws that forbid this and similar behaviors, such as in Wackwitz v. Roy 418 S.E.2d 861 (Va. 1992), in which the Virginia Supreme Court held in its ruling to determine the act of suicide by an individual of sound mind a common law crime, or in California, where medical practitioners are required to commit patients whom they deem as suicidal for psychological evaluation and treatment.

Currently, in regards to transgender people, medicine argues that transitioning therapy is a justified treatment because other treatments fail to actually treat the patient. This is shown with many studies. In addition, some studies do suggest that there are gendered differences between the brain which may trigger many cases of transgenderism, and the severity of these differences dictate the intensity of the patient's issues.

What is interesting is that pilot studies of BIID seem to suggest the same thing in many cases - but with a trigger. As stated previously, motor forms of BIID are believed in many cases to have a neurological component. In addition, almost all patients reported some early exposure to the disability in question that started everything. This component may actually exist in many people with either such mild BIID that it is almost not even an influence on their life to people who simply were not exposed to a trigger in childhood. This may also instead trigger fetishism of disabled people, as well.

Some may argue that what this means is that in cases where all else has failed, BIID patients should be allowed to transition. What it does instead is it threatens the legal status of the transitioning of transgender people.

It is able to be argued that one with an impaired neurological state cannot make rational decisions for themselves. For example, people born with severe autism or Down's Syndrome who are so crippled that they cannot make a rational decision regarding such a bizarre request. How is it that transgender people and people with BIID, who both may have neurological components, argue otherwise? For all intents and purposes, someone who is transgender or has BIID are much more impaired than someone who doesn't have either condition.

A rebuttal, which may or may not stand legally, is that transgender patients and most patients who claim they have BIID seem otherwise mentally sound. Individuals with these conditions usually lead ordinary lives and are otherwise indistinguishable from others, outside of these urges towards changing sex or disability, unlike those with severe neurological issues. This may imply that this individual difference is not enough to make that individual truly irrational in their desires.

What this leads immediately to is then using attempts to reintegrate this component back into the patient. In many cases this may have mild success. In transgender patients it may be necessary to ignore this state and allow "pretending" activities such as mild crossdressing, since such behaviour does not harm the patient. However, in cases with BIID, it should be required to at least attempt to reintegrate the body part into the identity schema, dude to the nature of the condition. In cases of more mild BIID, no transitioning may be necessary.

If therapy fails, it may be required to help them via medication. This will knock out subtypes induced by possible extreme OCD and many other conditions, including BDD and Manic Depression. It often helps improve the quality of the patient's life, however the desires for amputation do not necessarily cease in all cases.

This leads to more intensive therapy, oftentimes combined with treatments for psychosis. This eliminates cases induced by psychosis such as possible schizophrenics and in some cases factious disorders. However, even then, what if there are cases that are no longer resolved?

What else is there left to do?

We are left with a small minority of people with a problem with no solution. Many may try to act upon themselves to act on these urges, and many do. There are incidents where individuals will reach extreme measures for self amputation - for example, laying their legs across train track, using dry ice, or getting surgeries on the black market in 3rd world countries. Many of these self harming incidents lead to death or illness induced by the unsanitary conditions. At this point, is it, for the sake of the life of the patient, necessary to give them the surgery?

What does the law have to say at this extreme?

In my opinion, it is most certainly worrisome that transgender individuals are not investigated with such vigor - it is entirely true that in some cases, the causes may be psychological. Transitional therapy can cause permanent damage to one's reproductive organs and can leave an individual in a mutilated state. However, in many cases, they do report a positive result when nothing else seemed to work. Perhaps, while transitional therapy is good for certain cases, it is important to remind activism that it should be treated as a last resort instead of telling people that they should quickly start some treatment.

However, I don't really believe that "pretending" is wrong in any way. Many transgender people are able to get by simply by "pretending" to be the opposite sex. Many BIID patients also live a double life in which they may pretend to be disabled sometimes and this is all that is required. If this is the case, this odd behaviour should be tolerated as a coping mechanism that prevents them from harming themselves, when all else fails.

And finally, I have a little theory about why BIID may be so rare. Most people are exposed to the opposite sex quite early in life, and thus these individuals are more likely to have the trigger that causes them to become transgender to be set in place. Meanwhile, most people with the possible BIID deformity may not be exposed to this trigger, since it is far less likely to have a positive experience with a disabled person. This is just a conjuncture and not really a part of my argument, but I thought it was interesting.
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« Reply #5 on: June 13, 2015, 01:54:09 AM »

As an actual disabled person, I personally find this offensive.  However, I also think that the article in question is a bit... trollish.  Not sure if it's really worth biting this one.
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« Reply #6 on: June 13, 2015, 02:54:40 AM »

As an actual disabled person, I personally find this offensive.  However, I also think that the article in question is a bit... trollish.  Not sure if it's really worth biting this one.
Devil's advocate here, but if someone's belief that they had to be disabled was affecting their ability to function so much that relief could only be found by pretending to be disabled, doesn't that count as a disability? Its easy to get personal about these issues but at the same time, a person with this disorder is effectively disabled if they cannot function without a wheelchair or what not.

His credentials do check out, what exactly seems trollish to you? The 5 listed articles are sourced from scientific journals and only suggest that it may be a genuine, separate condition; not any full details about how it functions or how it should be treated. Regardless of what these individuals suffer from, anger will probably make it worse. You'd rather have them be able bodied and able to manage their condition than possibly break them down, right?
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« Reply #7 on: June 13, 2015, 04:51:12 AM »

This was mentioned in another site I regular, and it kinda blew up.  The people there think it's a bit of a troll topic, so it was stopped.

As far as their belief is concerned, if they wanna be disabled, they need to go all the way.  They can't just play pretend and act like they understand what it's like to have one.  No simple broken limb.  I live with Autism, know people who are blind, deaf, have deformities and missing limbs all within my apartment complex.  I see these people every day.  If you were to come up to me and tumblr up this "transabled" crap, I'd likely tell you to either permanently disable yourself or shut the hell up.  Being disabled is not fun.  It's a colossal pain in the @#$.  If that's really what you wish, then I don't think you know what you're getting yourself into, and when you find out, you'll deserve what you got.
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« Reply #8 on: June 13, 2015, 10:55:03 AM »

This was mentioned in another site I regular, and it kinda blew up.  The people there think it's a bit of a troll topic, so it was stopped.

As far as their belief is concerned, if they wanna be disabled, they need to go all the way.  They can't just play pretend and act like they understand what it's like to have one.  No simple broken limb.  I live with Autism, know people who are blind, deaf, have deformities and missing limbs all within my apartment complex.  I see these people every day.  If you were to come up to me and tumblr up this "transabled" crap, I'd likely tell you to either permanently disable yourself or shut the hell up.  Being disabled is not fun.  It's a colossal pain in the @#$.  If that's really what you wish, then I don't think you know what you're getting yourself into, and when you find out, you'll deserve what you got.
Role you should probably read the OP instead of just assuming @#$% based on past experiences

None of these articles suggest that autism is a possible form. It seems to be purely physical disability. A desire for mental disability is probably something entirely different. I mean I have autism as well but that isn't really an excuse to not investigate this disorder itself. As I pointed out earlier, if what is going on with these individuals seems to be what they claim is, they are effectively disabled themselves.

I think it should be noted that when these people pretend, they are effectively crippling themselves. Someone who wants to be blind doesn't just go get a cane and sunglasses, they actually obscure their vision, through painted sunglasses, contacts, eyepatches, whatever; learn O & M training, learn braille, and go out and be literally blind. For all intents and purposes, while they do this, they ARE blind. The people in wheelchairs bind down the unwanted limb. The ones that want to be deaf stuff their ears with cotton. Many of these individuals have many attempts to actually fully become disabled, through doing such extreme acts such as laying their legs out on train tracks or burning their retinas with high powered lasers, but have failed in some way.

These people would LOVE to actually fully go "all the way" but they cannot due to the difficulty of actually becoming disabled or fear of other people's reaction to self mutilation, or because of the ethical concerns regarding safe operation. As it turns out, it's not easy at all to completely cripple yourself - in the case of amputation, it is extremely dangerous to do so and people with this condition have died in attempts. Paralysis done at a specific point in the body is extremely difficult to get down right without harming other parts of your body. Blinding yourself can be extremely painful and harm other parts of your body. Self deafening may take a very long time. This disorder really shouldn't be compared to someone on tumblr who wants to wear a special snowflake label; it existed before that and these people understand far greater the implications of being disabled far more personally than those individuals. These people will go to any means to cripple themselves and feel comfortable with their bodies.

I'm not sure what having "fun" really has to do with any of this. If the theory of a neurological cause is supported (it's still not fully understood yet), these people don't have a choice. They want to pretend to be disabled because something in their brain is telling them that being able-bodied is not making sense. If it is psychological the people are not aware they have a choice, they don't "Feel" they have a choice, just as much as someone suffering from anxiety feels that they don't have a choice in being anxious. Either way, the feeling of being wrong holds them down and clearly has enough of an impact on their lives to have to act on it, and the fact that they are not disabled produced great suffering within them.

I don't think we can have an effective discussion on this subject unless you are willing to drop your own biases. Just because you are disabled yourself doesn't necessarily invalidate the nature of the disorder, and considering what studies have been done on it, it's likely valid to claim that there is at least something troubling these individuals and it isn't just tumblr special snowflake syndrome. Unfortunately, there are idiots who have bastardized the term, and this doesn't help, but it's important for us to separate between the actual sufferers and people just seeking attention.

For just the sake of argument, will you pass aside your own assumptions and accept that a condition that makes people neurologically unable to accept the fact that they are not missing a limb or don't have a physical disability is a genuine condition? The discussion of the ethical treatment of these individuals essentially hinges on this idea, since if they were not "sane" they would not even be considered. Majora brought up a really interesting legal concern regarding the disorder, for example.
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« Reply #9 on: June 13, 2015, 12:57:12 PM »

You really love taking things I say in my posts out of context, don't you?  Yeah, like I said.  It's better not to bite to this troll.
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« Reply #10 on: June 13, 2015, 02:00:06 PM »

Role, I'm not a troll. I'm Charon. Everyone else on the forum, except for maybe Atrius, already has known this for a while. Regardless, you've done nothing to explain "why" I'm a troll besides "ew I have awetism and this is gross". I also have autism and I'm telling you to stop acting so immature.

I bring up this subject because I believe it results in serious ethical questions that press our beliefs to their limit. It forces us to truly analyze and investigate why we believe what we believe in respects to what we should be allowed to do to our own bodies. I've been researching it extensively in the last few months because the lives of sufferers are very fascinating, and how can someone who wants to amputate themselves and the ethical maelstrom surrounding it not be interesting?

You really love taking things I say in my posts out of context, don't you?  Yeah, like I said.  It's better not to bite to this troll.
Role, you're outright calling scientific studies "trolling". Its possible that in the previous thread, that individual did not provide sources. But you haven't even read what I provided, or else you wouldn't be so silly as to call published pilot studies "trolling". This isn't a matter of reading in between the lines, this is your typical attempt to yet again divert the conversation because you realize you've been called out. Your claims are completely unjustified and frivolous.

Now it's entirely acceptable to doubt these studies since they are early studies after all, or to even claim that these individuals may suffer from something else. But outright calling them "trolling" shows that you have a complete disregard for science and sufferers themselves. Instead of actually addressing the issues, you call it trolling. Instead of even reading the articles, you remain blind in your ignorance because you have no interest in actually addressing these questions. Scientists suggesting the possibility that an unusual, rare mental disorder may exist is not "trolling", and its absolutely ludicrous to assume that someone who suffers in this way does not at least have some medical condition as opposed to "trolling". If you are critical of the studies, give me something more to chew on besides something so vague as " trolling". Majora did and I'm curious what he has to say in response.

Somehow I knew you would embarrass yourself like this. Grow up or leave. Your autism is not an excuse.
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October 13, 2018, 03:23:06 AM
Salanewt: Updated it to provide more info that I forgot to mention.
October 13, 2018, 03:16:48 AM
Salanewt: I'm still trying to iron out IQ 2 but I'm pretty sure it's entirely random targeting.
October 13, 2018, 03:16:29 AM
Salanewt: Oh yeah, I posted some more info about enemy IQ.
October 12, 2018, 09:51:27 PM
FoxThe HTML5 project is too small to count
October 12, 2018, 06:19:48 AM
Luna_blade: there is jjppof's html5 project...
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Luna_blade: Though Momo rings a bell it seems I came here after you left
October 11, 2018, 12:49:41 AM
Fox: (If that makes sense.)
October 11, 2018, 12:48:33 AM
Fox: Yeah, I guess so.  More just saying that's a good place to get answers to GS related questions at the moment.
October 11, 2018, 12:42:28 AM
Crystal Sonata: I did before, but I guess I could try it again
October 11, 2018, 12:41:32 AM
Fox: Not much at the moment. This forum seems pretty quiet. Perhaps you'd be interested in joining the Discord for GSHC that seems to have more activity?
October 10, 2018, 11:16:53 PM
Crystal Sonata: Any projects going on? I need a distraction from the daily grind and I'm interested in hacking GS again.
October 10, 2018, 10:02:53 PM
Fox: Thanks, and good to see you too!
October 10, 2018, 10:02:10 PM
Fox: A few people I'm sure... Most likely the regulars of the past. Such as Atrius, Charon, Role, Salanewt....
October 10, 2018, 03:11:17 AM
Crystal Sonata: I find myself wondering who still remembers me here. Obvs you do (Good to see ya Tea)
October 10, 2018, 12:46:11 AM
Fox: On second thought, it might be because you haven't posted much as Crystal Sonata.
October 10, 2018, 12:41:12 AM
Fox: And your intro isn't that bad. - I imagine most people would say the same about theirs?
October 10, 2018, 12:39:39 AM
Fox: :O - You've been gone so long, I think I forgot you were Momo.  Interesting.
October 09, 2018, 10:23:39 PM
Crystal Sonata: I just revisited my dark past on here and ouch. Someone delete that introduction thread please, the cringe.
October 09, 2018, 08:26:11 AM
Crystal Sonata: Aaaaand, she re-appears yet again. My life keeps dragging me away from the internet sadly.
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Luna_blade: haha oof.

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