Giving the despair about not qualifying for medical help a place

I recently wrote about my trip to a local German hospital [1] and the outright refusal to have the abdominal symptoms examined on account of my intersex condition, or 'rare disease', as it's apparently designated in Germany. A few days later I also recorded this video about it:

Briefly, at this point the symptoms include the swollen abdomen as its most prominent feature, accompanied by constant discomfort to pulsating pain, the latter mostly when lying in bed. The source of the pain appears to be centralised in the area where the uterus would be, just below the navel. Previously, gently pushing on this area would cause strong discomfort and the feeling of my breathing stopping for a moment. Currently the same action causes sharp waves of nauseating pain throughout my abdomen. In addition, there's constant discomfort to pain in the perineum as well.

Understandably, dealing with chronic pain like this is costing a lot of energy. The uncertainty about the underlying cause(s) and what it may develop into take most of the energy that is still left after that, and further ruins my sleep. Are these symptoms benign? Are they indicative of something horrible, like cancer? I can only speculate without medical data to clarify things.

At this point I still have my GP who is willing to help me, and I'm fairly confident that I can at least get an ultrasound with about a month. That's still a month to bridge in low-power mode, however, so it better get some results at least.

Just another month of trying to give hope [2] a place. What if it doesn't produce any results indicative of something wrong?


Life would be so much easier if I hadn't been born with an intersex, chimera body. Then I would have received medical help ages ago already.

Life would have been easier if I had given into the lie of being transsexual and had my genitals chopped up. I just wouldn't have been able to live with myself in that case.


What's more important, being able to live with yourself, or being able to live with society?


Maya


[1] https://mayaposch.blogspot.com/2020/02/so-i-got-denied-medical-care-because-of.html
[2] https://mayaposch.blogspot.com/2020/02/hope-versus-happiness.html

Body antagonism

I think it's fair to say that the past decades for me have been a period of growing closer to my body. From having literally no idea what my body even looked like, to getting to know it the way it really is. This period of getting over being estranged from my body has given me a lot of food for thought, also because of the many things which I have seen and experienced during those years.

For me, the reasons for becoming estranged from my body are many. Partially due to childhood abuse and bullying, partially due to my intersex/chimeric condition, the result was that by the time I became aware of this and tried to change it, I had some seriously incorrect ideas about my body. I had been told what my body looked like, and taken that to be the truth, but as I tried to match that up with what I saw in the mirror back in 2005, I both could and couldn't see it.

The thing was that I was projecting what I thought my body and face looked like onto the image which I saw in the mirror. Only through objective measurements, and through the feedback from people who had not known me before that time, was I able to begin adjusting this self-image. This was a time when I was seeing the image which I thought I saw in the mirror literally shifting between the projection and reality. This period taught me that sometimes what I think I'm seeing is in fact not what my eyes are seeing. Question your own perception.


Throughout the following years, I would be taught to dislike and hate my body. The medical and mental health professionals at the gender teams were very clear about me having to hate everything 'masculine' about my body, and to work towards the goal of complete 'feminisation'. Because I wanted to become a woman on account of being 'transgender/transsexual'. The conclusion of my body being that of a man was repeated over and over. I looked like how a male would, was the conclusion based on that. But that's not what I saw. Nor what many others saw.

When I first let my hair grow out during the period that I still thought that I was male, ironically to look 'tougher', this practically immediately caused my environment to stop identifying me as male. Instead I would get asked whether I was a girl or a guy, would get told to leave the male public restroom by cleaning staff, and basically got identified as a woman without ever having tried to be identified as such. After many years of this, I had to quit trying to get my intersex condition diagnosed for a while as I simply had to get my official gender social contract changed from 'male' to 'female' as the constant misidentification and smoothing over of resulting issues was getting to me.

At the same hospital where a specialist diagnosed me with 'autoparagynaecophilia' ('liking to think that one looks like a female, when one is not'), the first remark by a urologist who got called in during an examination was: "She really looks like a girl!" when she saw me. Well, then.


When did I feel the most hostile and antagonistic towards my body? When those 'specialists' and 'professionals' were pushing me to accept conclusions which did not match up with what my own body was telling me. When I felt uncertain about what my body really was and felt frustrated about this. I remember feeling okay with having those butchers cut up my body and 'normalise' it to fit society's views of what a 'woman' looks like. Yet this wasn't my own free choice. One's own free choice is never to have one's body cut up or harmed.

What I hold for true is that any act that results in one's own body getting harmed in some way, whether it's for social or personal reasons, is an act of body antagonism. It says that one's body isn't good enough, that it is imperfect and needs to be 'fixed'. It doesn't matter whether it's a tattoo, piercing, or more invasive body modifications including genital mutilation surgery, all of it is an assault on one's body. It's not an act of love or a caring gesture. It's a declaration of war and the usually permanent alteration of a body without cause.

A caring gesture, or body amity, is to take of one's body. To keep it healthy. To not smoke or use drugs. To not drink alcohol and stay out of the Sun to protect one's skin. To have blemishes taken care of to improve its natural looks. Body amity is to have accepted one's body or being in the process of doing so. It is an essential part in the unification of mind and body.


Thus, body antagonism is the exact opposite of body amity. It is to treat one's body with disrespect. To pollute and harm it. To mark it with graffiti and metal fencing. To rip out parts and replace them with something that is a mockery of what used to be. To override and enforce control. Body antagonism can be born from societal pressures to conform, but also from a variety of mental disorders, or a combination of both.

In the end, body antagonism is the opposite of the unification of body and mind. It is an open declaration of war between one's body and mind, which just happens to be a war which neither side can ever truly hope to win.


I'm glad that my body accepts me. I'm glad that I can accept my body. I want to respect my body, same as it does its utmost to respect me, the mind.


Maya

Why I don't like talking about suicide

If you want to see people get all awkward quickly, few topics work as well as that of suicide. For those who have not had to deal with it in any way, it's a topic which they'll either avoid at all cost, or they'll readily insist that 'talking about it' or medication are somehow solutions.

For those who have lost someone because that person committed suicide, they can feel anger at that person, some level of understanding or just plain sadness. Depending on the circumstances, one may feel anger at those who have driven the person to take their own life. Yet it's not something anyone wants to dwell on.

Unless one is among those who attempted to end their own existence, but didn't succeed. To say that it is an experience which changes a person is an understatement. You do not just embrace the thought of your own existence ending right then and there, and then wake up again in the hospital like you just had a bit of a fainting spell or something.


I can still remember much of the years that led up to my suicide attempt. Looking back now, I can also see the threads of previous trauma interwoven in those fresh traumas. My childhood abuse, the years of getting bullied and physically assaulted during primary and high school. The loss of my childhood home and safe environment after my parents divorced. The mounting uncertainty about myself. About my own body.

Then finding out about being intersex. Getting raped. Being rejected by doctors and psychologists as they lie about me being transsexual. Struggling to get my body acknowledged. Losing another home. Trying to move countries and failing. Finding myself falling back into an endless cycle of psychological torture by medical professionals and kin. Ending up in an abusive relationship and suddenly facing homelessness.

No hope. No expectation of improvement. No control over my life. No help.


Of course I tried the 'talking' thing during the last months before my suicide attempt. I talked to my GP, to various mental health professionals, etc. I got offered anti-depressants. Therapy sessions.

Therapy sessions and drugs don't fix homelessness. They don't fix an existence that is devoid of hope and colour. They don't give answers. The SSRI anti-depressants I tried just made me feel even more depressed and filled with despair. And talk about what exactly? How there's no point to my existence because I am not even allowed to exist courtesy of the medical system? How the healthcare system just wants me to go away, intersex organisations don't give a damn, the media just lap up the controversy and to everybody else I might as well not exist, or if they do care, they're as helpless as I am to fix anything?


...


At the end of all that anger, all the frustration, all of the helplessness and feelings of just being a toy to others to with as they please, at the end of all that there is just this complete sense of calm and that of absolute control which comes with the knowledge that no one can stop one from ending all of the pain and suffering. To someone who has never been there, it's impossible to describe the feeling of complete bliss and relaxation when one has made that final decision, prepared all that needs to be prepared and just has to do it.

It's the end of madness and insanity, and the return of sanity and one's humanity.


...


How many will truly grasp the words that I have just written down? What it feels like it? How empty it makes one feel after one wakes up in the hospital after one's preparations just weren't good enough? That sometimes ending one's own existence is the only choice that society has left open?

Of course I do not wish to insinuate that suicide is somehow a positive thing. Nobody should ever find themselves in such a situation. Yet at the same time it is, tragically, sometimes the best way forward. Sometimes it's the only way one can preserve one's dignity. And that just shows how horrific things have to get before one reaches that point of no return. I can only hope and pray that I'll never find myself in that moment of bliss again.

And yet, it's something that's so incredibly hard to talk about. You can talk about people getting killed, about murder and people being tortured to death. But do not talk about suicide. Killing yourself condemns your immortal soul to burn in Hell forever, after all.

I do not wish to talk about suicide, because of all the unpleasant responses it gets. Of people who cut off contact after you have tried to take your own life. Because it offended them. Of the countless 'why didn't you just...' responses. Talking about suicide just reveals why suicides happen.


Yet, much like how one can somehow find oneself at the end of one's existence in that one last moment of defiance, so too is it sometimes inevitable that one feels that one has to address a topic that is so readily ignored, even if it is this very act which perpetuates the tragedy.


Maya

To qualify for love

Possibly the best way to define 'love' is as the willingness to forego the uncertainty that comes from the knowledge that one can never truly know everything about another person. To intertwine one's own life with that of another, while having faith that the other person, too, will do their utmost to be as honest and forthcoming as they can be, while sharing this life's journey.

This is probably also exactly why it's so hard for those of us who have been taught already as children in the harshest way possible that it's absolutely inconceivable that one would drop one's defences in such an absolute manner. The knowledge and sensations of abuse and the ever-present, lingering threat from Others never truly subsides.

Either it's the feeling of being threatened, or the certainty of being abandoned at some point in the future. You cannot drop your defences. You cannot forget the lessons of the past. You didn't lose your childhood's innocence for nothing, after all. You lost it so that you can be safe now. Isolated. Away from others.


Still, one can imagine the sensation of allowing the other person's hands to touch yours. To have them slide up your arm and touch your face. The feeling of a soft, gentle kiss. Of an embrace and actually feeling everything instead of retreating to that safe spot in one's mind. To experience and feel instead of the eternal numbness. To really trust another person.

Yet to map those feelings onto the human beings around one, their chaotic unpredictability and seeming willingness to hurt others through lack of empathy and communication... all of it conveys a feeling of hopelessness. Why even try, when one is very likely to just get hurt over and over?


As I comfort the sorrows of the traumatised child that still lingers inside of me, I also have to consider the adult me, who is traumatised in their own ways. Not the least of which is the complication presented by having a body that is so unusual. A body that is afflicted with a disease or a disorder, in the eyes of most medical professionals, at least. A body that is healthy, but falls outside of any usual definition of 'human', i.e. being male or female. A body that confronts one with the lies most people tell themselves about 'love'.

True love is platonic at its core. That is, a relationship and mutual understanding based on shared creative and/or intellectual pursuits and interests. Although physical aspects can enhance a relationship, and it's undeniably true that humans are highly focused on physical pleasures, the fact remains that without the platonic aspect, the carnal pleasures that remain are as satisfying as indulging in unhealthy snacks. It'll feel good for a while, but then you get fat, lose your teeth and realise that you have got nothing really to show for said indulgence other than the price you paid.


I don't feel that being bitter about not having found love is a realistic prospect. It's inelegant and feels like self-pity. Two things which I cannot stand. The most important thing to me is still that I can love and care about myself. Me as a person. Also my body. After all, what is it that one entrusts the other person with when you give them your trust and love if one doesn't love oneself first and foremost?

Maybe that's why this struggle of mine with my intersex condition, and the continued inability to give it a place is so important, mostly on account of society pushing me again and again to hate this body of mine, to look at it as a diseased wreck, affected by the horrible disease and disorder called 'hermaphroditism'.

I don't want to hate my body. I want to love this body of mine. It isn't suffering from a disease or a disorder. Yet society insists it does.


I want to love myself. I want to feel loved. I want to love back.


Yet I have no idea if there's a path towards that goal.


Should it be a goal, though?


Is love worth it?


Does one need to love oneself to be happy?


I do not know.


Maya

On writing stories, creating audiobooks and my Patreon

Last year I set up a Patreon account [1], initially mostly to let folk who wish to support me in my efforts to write that autobiography that I have been blathering about since 2013. Over the past months this basic concept has transformed into something more, however.

I have been writing fiction since I was a child, finding myself initially inspired by writers like Stephen King, Dean Koontz and gradually expanding my horizon to include broad swathes of fantasy (Tolkien et al.), having found myself essentially reading mostly such fantasy works over the years, along with a range of classics (currently 'The Fountainhead' by Ayn Rand [2]).

Moving my own works of fiction from works in the style of Stephen King et al. into something more... original, I have found myself inspired to write about things that move me in some way. This is what led me to start writing a completely new version of Nintendo's Legend of Zelda: Ocarina of Time, along with short stories such as 'A Dying Fire's Ember', the latter being inspired by a real-life story which I read by an ER doctor.

I also started a story called 'In Between and Neither' back in 2010 or so, about a young intersex girl, which turned out to be both original, yet close enough to my own story to be called semi-autobiographical. It led to a spin-off story called 'In Between: A Love Story', which was also inspired by something I read, combined with the concepts I had floating around for In Between and Neither.


I love writing stories, to see those worlds and characters come to life inside my head, as well as in the head of anyone who reads it. That's why it felt so natural to take it to the next step and start reading those stories for those who prefer audiobooks. For myself it's an interesting next step to move from the monk-like work of writing books to something more akin to acting. Not just reading the text, but trying to perform the story, with voices for each character and trying to get the intonation and inflection correct.

This is currently the primary type of content on my Patreon account, with most of those videos being made available on my YouTube channel [3] as well after a brief exclusive period for my patrons. Currently I'm working through the never-released original chapters 3 through 5 of In Between and Neither, which I rewrote after my suicide attempt in early 2011. As I intend to continue In Between and Neither's story and bring it to some kind of conclusion, I feel it's important that I compare both versions in this fashion, along with the feedback from my patrons and other viewers.


Working on getting some content published every week like this adds a kind of regularity that I feel is important for such creative work. Though I hardly have a massive following on Patreon at this moment, it is enough to inspire me to write more chapters of Ocarina of Time, more chapters of In Between and Neither, and to do my best to bring this old dream to fruition to make people experience new worlds and ideas through my stories. Meanwhile for folk who prefer to read their stories instead of listening to someone waffling into a microphone, there's also the Library section [4] on my website, which contains digital versions, with ePub versions gradually being made available as well.

Alongside all of this, I have resumed work on my autobiography, while feeling much happier with the new writing style and approach that I'm using for it. Before long, I hope to do readings of these autobiography chapters as well, though I'm likely to keep those exclusive to my patrons. At least for now. It's one thing to put fictional stories out in the open like that, after all, yet something else to put my own story out there, in a way that goes beyond even my ramblings on this blog.

Sometimes a story needs that bit more intimacy and shelter to grow properly, after all.


Maya


[1] https://www.patreon.com/MayaPosch
[2] https://en.wikipedia.org/wiki/The_Fountainhead
[3] https://www.youtube.com/channel/UCyuqprsuY8JyCTn4IgDbS8g
[4] http://mayaposch.com/library.php

So I got denied medical care because of my intersex body

Previously I talked about hope, and how I have come to see it as something primarily negative. In that sense it seems somewhat ironic that after all the convincing that others and myself did that yesterday's appointment at the hospital would be different, it appears that this negative view got validated once more.

I had to wait two and a half hours before the doctor saw me, after originally having been told that it'd take about one and a half hour after I had some blood drawn and sent to the lab for testing. At that point I wasn't really that fresh any more, but nevertheless tried. I summarised the symptoms for the doctors, showed the reports so far, from anything from the abdominal scans, the spinal and brain scans, the endoscopic examination and the abdominal exploratory surgery in 2018. I got berated on not having everything in chronological order and no reports for all of the MRI scans.

The abdominal distension, gathering of fluids in the abdomen and weight gain got brushed aside, with me being referred to the gynaecological department for 'potential endometriosis', with the doctor talking to me like I had never heard of endometriosis and never asking me any questions. Then there is the persistent pain in the perineum that is highly reminiscent of vulvodynia[1], with symptoms gradually worsening since I was 11, with the past three or four years ramping up the pain, to it being continuous for the last few months.

Maybe because I mentioned it hurting like hell every time I go to the toilet, the doctor just focused on that aspect, insisted on poking up my bum to confirm that yes, it hurts like hell when you press on the perineum. I got referred to the proctologist, to basically repeat the same research of 2018 once again. Checking for fissures and such, after this had been discounted already. That appointment would be in well over a month from now, likely the prelude to an appointment weeks later when I'd have the endoscope shoved inside me again.


As for the actual symptoms, the abdominal distension, weight gain and fluid in abdomen in particular, when pushing the doctor on this, his response was that they 'have no experience with rare diseases like intersex, so they cannot help me'. Meanwhile the ultrasound machine was ready to be used behind me. A quick ultrasound scan would have taken literally minutes. Instead I felt treated like my abdomen was some freakish no-go zone.

It would take me a few hours for the comment about intersex being a 'disease' ('seltene Krankheit') to sink into my exhausted brain. It's the kind of language that has been popular since the beginning of last century [2], only then it was used by National Socialists and kin who liked their racial purity theories. Eventually during yesterday I would go from feeling rather numb to bursting out crying as reality began to hit me. Last night I slept poorly as a result, with the effects of re-traumatisation hitting hard.


So then, instead of having the actual symptoms addressed, I'd get pacified with 'something', that would involve humiliating and invasive examinations, while not doing anything about the actual symptoms with which I came to the hospital. Even though my GP also agrees that endometriosis is an option, she and I are more worried about the monthly fluids that would be gathering in my abdomen - to hopefully get reabsorbed - since my female reproductive organs got jumbled during development. Endometriosis treatments would not address this.

In the end then, there is no medical help for me. Not even for diagnosing something that isn't necessarily even related to my intersex condition. I very likely got fluid in my abdomen and bowel obstruction. Every person has an abdominal cavity with some organs in it. Every person has intestines. Presence or absence or configuration of reproductive organs should not be a consideration in this kind of basic diagnosis involving the abdomen as a whole, and the state of one's intestines. Yet apparently being intersex immediately disqualifies one for any kind diagnosis there.


This is the end of me trying to find medical help, then. While these symptoms that I have will very likely keep persisting, it's futile for me to try and find help with it. Because the moment it's discovered that I do not have a standard male or female body, I'm instantly disqualified. I guess the best I can hope for with this diseased body of mine is that the dentist will still want to check my teeth.

Will these symptoms worsen? Maybe. Am I risking my life and health by leaving it untreated? Maybe, what choice do I have? Clearly I was born in the wrong body for society, ergo I was on my own to begin with.


Maya


[1] https://www.mayoclinic.org/diseases-conditions/vulvodynia/symptoms-causes/syc-20353423
[2] https://mayaposch.blogspot.com/2020/01/surviving-auschwitz-on-sins-of-being.html

Hope versus happiness

The concept of 'hope' is usually postulated as something positive, as a driving, positive emotion or feeling that keeps one going in times of adversity. Yet, as I have on many occasions found, 'hope' is generally the prelude to disappointment, setbacks or worse. I would classify it as a primarily negative feeling, as it explicitly makes clear that things aren't right or fine, with one banking on a chance that things will somehow turn out okay.

Hope and happiness are also mutually exclusive as a consequence. If one feels hope, one is not and cannot feel happiness, at least not in any sense that conveys permanence and doesn't feel like daydreaming. Happiness implies permanence, stability and a sense of being at peace. Hope implies uncertainty, nervousness and the possibility of accepting bad news, an upheaval in one's living situation, or worse.


I find myself pondering these thoughts as I have somehow found myself back in the medical system after previously having settled on leaving the diagnosing of my intersex condition's characteristics as an unfinished project. Whether or not my current symptoms have anything to do with said condition I do not know. That's rather the point of this upcoming exercise, after all.

At my current GP's office it has quickly become clear that these symptoms of weight gain, a distended abdomen with apparent fluid inside it, along with bowel obstruction and persistent pain and discomfort in the perineum require a quick and thorough diagnosis. Which is why I have been referred to a larger hospital that has the resources and capability to handle such a case. Next week is the first appointment and the presumably first series of tests.

It's hard for me to pin down what my thoughts on this all are. On one hand I'm relieved of course that something is happening, and what's happening inside my abdomen will be diagnosed. On the other hand I'm both struggling with my too many memories of medical systems over the years, as well as a range of emotions including uncertainty and hints of fear. One never knows what will be found, after all.


What's different this time around is that I'm not at the hospital to have an intersex condition diagnosed, but for worrying medical symptoms which could have any number of underlying causes. It's in one way reassuring, because it means that it is not connected to those years of unpleasant medical experiences, yet it is very much the opposite of reassuring in the sense that something is decidedly wrong with my body, just that it hasn't been determined yet what is wrong and how to fix it.

Thus hope remains.

Depending how things go these coming weeks, it could all turn out fine, in which case I'd feel a lot happier. This is what I hope for, obviously. But hope doesn't come with guarantees. Reality is not concerned with what my wishes, hopes or dreams are. I only get to accept whatever comes my way. Whatever that may be. After over a decade of 'just taking it', it's not something that comes easily to me any more.


Between the relief of my body finally making its way through the final stages of puberty, and these worrying symptoms, I'm not sure what to think or feel. Is there a correlation? Is it a sign of something positive that just needs some surgical tweaking? One's thoughts just keep spinning in a circle. Hoping. Feeling uncertain. Trying to ignore it.

All I can do is hope and wait until next week's appointment. Meanwhile continue as normal. In so far as possible.


Admittedly it would be pretty cool if part of these symptoms are me growing that mature uterus and ovaries. First case in the medical literature, for sure.


Maya

How to tell a child that the next adult won't hurt them again

As a child we learn what we can expect from our environment, and how to adapt to best survive in it. Or even build up a life that fits our expectations. Most children learn that communication and honesty are important skills to get ahead in life.

Some children learn that there are monsters lurking among adults.


I know that every adult is a potential monster. Because I have been there already. I have seen the monsters in human disguise.

I can still feel their hands groping me. I can still feel the terror. The helpless anger as they savaged me.


I never got away. I never truly escaped. Because I know that there are monsters out there. And any adult can be one of them.

I do not know which one it will be. The next one to attack me. So I have to be wary of all of them. What's more important than to defend yourself against monsters, after all?


I wish I could forget the groping hands. The hands painfully grabbing me and treating me like a piece of meat. I'm glad that so far I cannot recall everything that happened, though I'm well aware that the memories are slowly coming back. I can feel them crawling back inside of me, like slimy, rotting pieces of a nightmare that should have stayed forgotten.


How do I tell the child in me that then isn't now?

How can I possibly tell the child such a thing, when I know that it is a lie? For I have seen the monsters. I know that they are real.


How can I ever accept a person's touch on my body again without my mind reeling in disgust and withdrawing itself, just like my mind did back then?

How can I know when it's really a person, and when it is a monster?


Even as I become more and more aware of this deadening of my emotions and this seemingly infinite divide between myself and something as seemingly uncomplicated as physical contact, I do not see how I can deal with it. Maybe I'll never be able to.

Why would I want to be able to accept any attempt at physical contact from another person again?

To be able to hug another person and not feel like one's body is just a piece of dead flesh. To perhaps feel more human.


It's so isolating to always feel this wary of everyone. Every adult. Every potentially dangerous situation. To even imagine getting kicked and beaten up while lying in bed. To have one's mind work through some flashbacks for the heck of it.

I'm pretty sure that this isn't something which one 'fixes' by simply 'getting over it'. Those feelings of horror and disgust aren't getting any less.


If this was a fairy tale, I'm sure that there would be an easy fix like 'true love' or something equally cheesy, but this is real life. With real monsters. And pointless deaths and suffering.

Real life is rather short on happy endings, sadly. Real life prefers to teach you to accept that you cannot change some things.


I do wonder how this story continues. Every child deserves it to grow up happy, after all.


Maya