Saturday, 28 February 2015

Self-hatred

I have for the longest time understood hatred to be something objectively negative, without any redeeming qualities or possible positive outcomes. Much like how I learned to distinguish at a young age between having 'hunger' and an 'appetite', so too did I learn to separate negative things into things I 'dislike' and those I truly 'hate'. The latter category isn't one I use a lot, much like how I am not often really hungry in a world surrounded by food. Food is too readily available and so are forgiveness and understanding. Truly pure, blind hatred isn't something one should ever commit to, or so I believe.

Yet despite these convictions I found myself yelling at myself last night. At my reflection, to be precise. About how much I hate what I see there in the mirror, about my pure hatred and loathing for having such a despicable body which has seen fit to gift me with just about every possible type of pain one could possibly imagine. Without rhyme or reason I found myself punching and clawing at this shell of flesh, as if to mash it into a pulp and tear away chunks. I was well-aware that this wasn't 'me', but something else taking over my mind and flooding it with the suggestion that I would feel better if only I were to destroy this body. Punish it. Hurt it. Pain it.

I sat on the side of my bed for a while afterwards, just sobbing and alternately hugging and hurting myself depending on which side was more in control. Only when the adrenaline began to fade and exhaustion set in did I relinquish this position and retired to bed. Even then it wasn't all fine, though, as I felt terrified. Scared and startled at every noise. The occasional loud tick from the heating system. The upstairs neighbours walking about. The tinnitus which my body seems to be producing through some kind of biofeedback. When I finally fade into unconsciousness it's a major relief.

As I'm writing this I don't feel like I did during this episode at all. That person was beset by hatred, by destructive urges. I remember feeling this seething hatred inside as I sat there on my bed and the intense pain it caused me. I knew that I couldn't keep living with all of that hatred inside me and no hope for improvement. Now that I'm no longer that person I don't feel hatred at all, more of this usual sense of careful optimism and sadness which seems to make up much of my main personality. I don't feel like I should commit suicide right now. I don't wish to harm myself. Yet I also know that this other 'me' is still there.

Even though I denounced hatred and proclaimed that I do not hate the psychologists, physicians, intersex organization members, politicians and the countless others who have tortured and nearly broken me over the past decade and some, this other part of me doesn't think that way. It hates every single one of them with a burning, raging passion and would gleefully bath in their collective blood. It tortures me to think that a part of or different 'me' can harbour such thoughts, even if I can understand why it would feel that way.

Ultimately feeling all that hatred and being unable to do anything with it is self-destructive. That's why I end up bruising, scratching, cutting and otherwise hurting myself over and over again when I become that other person. Because the hatred has to go somewhere and the only available target is this body which has been at the center of every single interaction which has fed this hatred. It only makes sense to eliminate it as it's clearly part of the problem.

Last night's experience does drive home the point of how time is running out for me in so many ways in finding a medical solution to my intersex condition. Not just because of the agonizing 2-3 weeks of sheer physical pain every month because of my female side going through some hormonal cycle without the proper configuration being in place as a result of me not having a regular body. It's also because of this multiple personality problem which is likely part of my PTSD and affords me a place where to put the emotions and feelings I cannot deal with.

Simply put, if I don't find medical help in the coming years it'll be a race to see whether I'll suffer that mental breakdown or a fun medical complication like sepsis first. Ten years didn't get me medical help. The possibility of finding said help during the next ten or even five years is... slim to zero.

While I do not hate the physicians who are still directly or indirectly torturing me like this, I do not feel a single shred of respect for any of them. Is this truly all that I deserve?


Maya

Wednesday, 25 February 2015

Language as a component of one's personality

During the many years that I grew up and lived in the Netherlands I was always surrounded by texts written and sentences spoken in Dutch. As a teenager I quickly became fluent in English and even got exposed some to German and French, but if I went outside I'd hear Dutch. Everything inside stores was listed in Dutch. I'd talk with people around me in Dutch, aside from the occasional tourist or foreign student with whom I'd converse in English. For me English was more the language of the internet, and for when I left the Netherlands on a few occasions. One could say that Dutch formed a significant part of my life. Until I left the Netherlands for good, that is.

Crossing the border during that move in the realization that I had just decided to truly leave behind the Netherlands, I felt a lot of trepidation. Mostly about how things would go once there, but I also felt a lot of anxiety about having to learn German. Despite having had a few years of German at school (and not being particularly good at it), I was moving to a country where they spoke this language, leaving me isolated in important ways. My English skills helped me bridge the gap while I desperately tried to learn German - assisted especially by one of my amazing chefs at work - but it was the point where I realized that I could actually converse casually with German speakers in their own language without issues that things began to click for me.

Dutch had become largely irrelevant to me when I left the Netherlands, and now German had taken its place. Or so it felt. Earlier today I held a number of conversations with colleagues regarding an upcoming 'girl's day' event in which I offered to participate. At no point did I feel lost or confused about anything, nor did I feel like I had to put in a lot of effort to make my thoughts clear in German. When I enter the office in the morning I simply speak German. When necessary I can speak English, too, but it feels somewhat jarring now to switch. German is the new normal language for my surroundings. The new expectation.

With it I feel also that by swapping languages like this it has changed me in some ways. Naturally I have changed the most as a person over the past year simply by (largely) finding my way again and finding some bloody self-respect. Yet switching languages is more than just a minor change. It changes the way one thinks and expresses oneself. It affects the way one communicates with one another. Here I must say that I find German to be a very... soft and expressive language. Very formal as well, with brutal grammar rules, but after a year-long crash course in the language while surrounded by people mostly speaking said language, I have really become used to it. When I now hear or read Dutch I'm afraid to hurt myself on the sharp edges, so to say.

Similarly I find that when I switch to English it also changes the way I express myself, and for Japanese as well. The thing I like about Japanese is that it's so very versatile, in that it can adapt from course street language to formal (keigo) to a beautifully poetic language suitable for the most amazing of plays and performances. English is somewhat similar, but like most languages suffers from a large grammar baggage and strict pronunciation rules. Still, I think that these two are my favourite languages, in that they reflect qualities I can see within my own soul as well.

Recently I have begun to focus on brushing up my Japanese skills, as these have become much neglected over the past decade. To this end I have bought a number of Japanese books to peruse, study and (hopefully) comprehend sufficiently. People have often asked me whether I have lived in or would like to visit or live in Japan, to which I reply negatively. While I wouldn't say 'no' to visiting Japan itself, to me the true beauty and truth of a culture lies within its language and its literary works. Each of these Japanese books I'm reading now is a classical work, mandatory reading in Japanese schools and an intrinsic part of what it means to be Japanese.

In a similar manner I have read a number of German books, all of them considered classics. My most recent book there was Hermann Hesse's 'Siddhartha', a pre-WWII classic, yet which still reads as if it was written recently. I feel that through reading these works I have gained a new-found appreciation for and understanding of the German language. Maybe this is truly what is meant with the phrase 'a living language'. By having so many works, so many contexts and gathered experiences accessible, a language truly is the key to understanding a culture's unique world.

But what about Dutch, you might ask. While I have left the Netherlands behind me forever, I try to see the language separate from the Dutch culture. To me Dutch now is the language using which I speak with my mother and using which I can understand parts of my past as I work through them for my autobiography. There is no Netherlands any more. No Dutch culture. No Dutch language associated with it. There's just a language which forms this last link with my past.

In that sense it's very symbolic of my own personal changes.


Maya

Saturday, 21 February 2015

Got to be nice to oneself, sometimes

This week I have been little more than a scientific experiment. A rat in a little cage to be poked and prodded with all responses noted and analysed. Only it was me doing the experimenting on myself, and recording just how terrible I felt on each respective day. The reason for this experimenting is as I have mentioned on earlier occasions these worsening monthly hormonal cycles I seem to be dealing with. Before I ran out of the anti-conception pill last year I used to take the pill every day, without taking the usual week-long break each month. This meant that any symptoms I then felt were relatively subdued and not very characteristic.

After getting a new prescription early this year from my GP I decided to stick to the prescribed 3 weeks on, 1 week off regime, as would be normal for any regular woman taking the pill. This week was the second time that I tried this and the results have been quite interesting. Most notable is that as far as I can determine it largely follows the normal pattern of menstruation, with the abdominal cramps. What is definitely not normal is that it also somehow affects the nerves to/from my right leg and to some extent my right arm, with loss of sensation and coordination observed.

This is actually quite characteristic from those months without the pill, as well as those years before I started taking the pill. My first time suffering these symptoms I was 11 years old and it completely disabled me for a few hours, unable to walk. I remember crawling to the toilet when I had to go, tears flowing freely from the agonizing pain. On occasion the cramps are bad like that first time again. Part of me wonders what would happen if I suffered such a horrible thing while in public, or at work. It would most likely be horribly embarrassing.

The last symptom of each cycle is one which I remember vividly from my days as a teenager, although back then I didn't understand at all what was going on. This symptom involves the region where the vagina would be and is experienced as an itching, burning, sometimes extremely painful sensation, as though there's a vagina underneath the skin and it's swollen from terrible inflammation. A brief physical examination in that area does painfully confirm that particular hypothesis. On the worst days it basically means that any position is exceedingly uncomfortable and going to the toilet can result in me blacking out from the pain. This, too, goes away by itself, though. As a teenager I mostly experienced it as though I had a bad rash down there, causing me to walk funny for a few days.

That's just the pain symptoms, of course. As for my emotional condition and general mood, I can say that during this and the previous week I was a lot less emotionally stable, with a proneness to outbursts, be it from frustration or sadness. I have to admit that the pain is most definitely contributing to this, at least the during the latter days, as I'm feel very anxious and distraught over feeling such pain, with no clear idea of what it is or in how far I should be worried. As I type this text, I can feel pain pulsating in alternately my right and left side, with occasional bursts of pain from lower areas. Where's the pain from? Should I be worried about it? I do not know.

So I am thus reduced to a mere experiment and curiosity. I'll have to report my findings to my gynaecologist some time really soon now, while suppressing any emotions which might dissuade me from doing so. Me as a person isn't relevant here, and hasn't been relevant in any of this since before I was a teenager. It's all about this body. This horrible, painful, mystifying body.

Yes, I do desire emotional consolation and comfort. I'm only a human, after all. Yet in all of that my body is still the proverbial elephant in the room. Virtually all of my emotional problems can be deduced from and will loop back to said elephant. If my mind were a maze and someone were to wander through it, they'd just keep bumping into elephants, which would all be the same elephant. It's elephants all the way down. Regardless of what you'd define 'down' to be.

One of my worst nightmares has to be meeting friendly people. People who express concern for my situation and a desire to help in some way. I say 'nightmare', because this is something which involves a little thing called 'hope', which is as pleasant a thing as taking a swim in a warm, fluffy, yummy smelling pool, right before being dumped into an Arctic landscape, in the freezing snow, with hungry polar bears gnawing at your face. Even for a Finnish person that'd be a tough sell, I imagine.

Back on topic, the central theme is 'disappointment'. Do not promise what you cannot reasonably make come true. Disappointing someone who still bears many fresh wounds from psychological trauma may not seem like much in comparison to the wounds already suffered, but it's about as subtle and pleasant as having someone step onto your leg after it's been broken in multiple places and riddled with bullets. The existing trauma amplifies new pain. It doesn't subtract from or soften it.

This brings me to the title of this text. Basically it's about meeting someone who seems to have such innate understanding of what you're thinking and - more important - feeling, that it's many shades of awesome and reassuring. As usual there's a lot of shared experiences, but the most important thing is that such a person then proceeds to proclaim that they'll help you, darnit, and there's nothing you can do to stop them from helping you. That's... different. Maybe it's another lead which won't work out, but being left with 'just' a good friend is something I would hardly call a disappointment.

Such things somewhat lead me back to thinking about myself as a person, instead of just a body in an experiment. Being described as a 'beautiful woman' yet again and reading how someone else perceives me as a person allows me to claw my way back to actually being that person. To being a person, with a personality, feelings and emotions. Not just a body. Sometimes one has to be ignore the gargantuan elephant in the room.

So yesterday I dropped by a local electronics store and picked up the new 'New' Nintendo 3DS XL with a copy of Pokemon Alpha Saphir (Alpha Sapphire in English). Just as a little gift to myself, who had wanted to play a Pokemon game for the first time in years so badly. I think that myself deserved this one for putting up with everything. Got to be nice sometimes.

Small steps.


Maya

Tuesday, 17 February 2015

The things left unremembered in one's past

A while ago I touched upon something which may have happened to me when I was still very young. An event which around the age of five turned me from a cheerful, open and very chatty child into one which was withdrawn, quiet and generally avoided contact with others until I was about twenty-one. Not because I consciously wanted to, because I always felt very frustrated at not fitting in and feeling like I somehow not belonged there. During many interviews over the past years I have referred to this change when I was a child as a result of me being intersex and possibly because of my giftedness as well.

Yet as more and more memories are returning to me over the past months, I'm beginning to remember things which do not fit in with that theory. Memories which seem to fit better with a far more disturbing thing which my mother asked me once about, in a very concerned manner. The matter being whether I remember being sexually or otherwise physically abused as a young child. Back then I said that no, I could not remember any such thing ever happening to me and the mere thought seemed ridiculous to me.

The past years that confidence has been slowly eroding, however. Digging further into my past and especially recently remembering things I had completely forgotten about. The important clues are in the way I changed after my fifth year. Becoming quiet and withdrawn are things which can easily happen to children who are gifted or otherwise 'different' from their peers, so that in itself is nothing to get worried about. What is upsetting is that I more and more vividly remember a far more disturbing trend, namely that of... I'd almost call it an obsession with thoughts about sexuality, as well as the worrisome aspect of me exposing myself in a variety of situations.

Especially the latter is more akin to the behaviour observed in young children who suffered sexual abuse, as they begin to imitate or otherwise repeat actions performed or observed. It's a disconcerting notion that I began to do these things without really understanding why it was so important if not obsessive to me. I remember going through a similar period of excessive sexual behaviour after suffering getting raped in 2006. That lasted for over a year until I met someone who made me wake up from that nightmare.

Why would I worry about it if I really did get sexually abused as a 4-5 year old child? It's in the past, right? I'm an adult now and nothing which happened to me as a child can hurt me now. Everyone knows that.

Of course, that's utter nonsense. There has been an increasing number of studies which show just how severe the impact of childhood experiences is, particularly those involving trauma. If it's true that I did suffer sexual or similar abuse at such a young age it'd explain a lot about my behaviour after that time, also about my intense withdrawal from social life and the intense struggle with emotional puberty far beyond what would seem reasonable merely from me being intersex.

It's still possible that nothing happened, and it was all just coincidence. Maybe I was just a weird child that I felt compelled to do those in hindsight incredibly embarrassing things, even if I cannot for the life of me remember what made me do it beyond just 'an urge'. Maybe I'm underestimating the effect my then unrecognised intersex condition had on me, emotionally. Yet the puzzle pieces still don't fit nicely.

Maybe I'll remember some day. Maybe not. Only time will tell.


Maya

Sunday, 15 February 2015

Job security, at long last


This week saw an interesting improvement in my life when I signed a new contract at my current work place. In earlier posts I reported that I was looking for a new job as my current employer had basically run out of work for me, but things changed with new projects coming in and others being extended. As a result I got offered a permanent contract, which I gladly accepted, despite having a job offer from another company in Karlsruhe as well.

Ending a month of job searching and interviews in such a way isn't bad at all in my view. Not only did I always like this company - synyx - I work at, but its owners have been incredibly helpful and supportive of me back in 2013 already, both in consideration of me as a foreigner but also in how they handled my personal situation. It was their support which allowed me to make the decision to move to Germany and get settled, with my boss going out of his way to ensure that I would find my own (temporary) place. I would have loathed to give all that up just because the non-Java type projects dried up a bit last year.

I quite like the projects I'm working on, with most of what I work on now written in C and C++, aimed at embedded platforms. This means mucking about in a lot of low-level code, analysing protocol logs and hammering out test protocol rigs in hexadecimal notation. In other words, the kind of stuff I love to do.

So with the signing of this contract I'm set job-wise, not having to move countries or cities either. Only change I'm looking at at this point is to find a new place to rent (or buy...) which is a lot more decent than where I currently live. What I'm looking for there is a place which is reasonably well-maintained and insulated, plus where I'm not bothered by upstairs neighbours (hearing walking, toilet use, etc.) and/or ticking heating system and other tubing in the walls. A place where I can sleep at night without having to use earplugs, basically. As a temporary apartment this place has served me well, I think, but unlike with my job, here it is time to move.


Maya

Friday, 13 February 2015

On this eve of torture-the-relationally-challenged-day

One of the things of which I have become painfully aware of during the past decode is the disconcerting dissonance between the push to see sexuality as something positive - defining adult humans - and the in comparison rather dark reality. While those still possessed of the innocence befitting the former may see ads for products aimed at making oneself more alluring to potential mates to be an innocent and even desirable thing, those of us who have unfortunately found this veil of innocence to be cruelly ripped away merely cringe at the negative connotations such suggestions generate for us.

For us it's every time a woman tries to be sexy and alluring, or a man (or teenager) boast about 'getting laid' that we cannot help but despair a little inside. See a couple walking on the streets, in a film or in a photograph, and part of you dies and wither away. For us the blatant lie that is the enjoyment of sexuality and the joy of a relationship doesn't exist any more. Any possibility of that was destroyed, trampled upon and crushed when someone who shouldn't have laid hands upon us did just that, or destroyed us from the inside out, or a combination of both. Others just didn't fit in the narrow mould society desires from its members' physical bodies and found themselves cast out and surviving outside the confines of this comfortable lie.

To us the thought of experiencing sexuality or being in a relationship is invariably accompanied by painful, traumatic flashbacks. For every gentle, caring touch and word spoken in love we can put an act of brute violence and words uttered or yelled in anger and maliciousness. Though we would love to let go of these bad memories, it's already too late for us. We have looked behind the curtain and have seen the true face of what society keeps trying to pass off as something wonderful and amazing.

That is not to say that it's impossible to find someone with whom mutual love and respect - even intimately - is a natural thing, but that the path that would lead to such an outcome is practically not traversable for us. This especially amidst the constant insistence by society in general that a relationship and sexuality are normal, healthy things. We can see that for the lie that it is, that both are mostly dark, rotten, festering piles of something very distasteful. Unless handled with extreme care it will hurt you, possibly destroy you.

Those who have felt the seeking hands of lustful men on their bodies as they gave themselves to these men without really knowing why - or worse, without consent - can never lie with a man again without experiencing those memories every single time. One could call it trauma, or alternately the unfortunate knowledge of reality. Ultimately it's the experiencing of those facets of something which many prefer to hold as something that in the end is always positive and beautiful.

Tomorrow will start another round of mating dances and attempts at getting as much sex as possible, all without really knowing why, or with any care for those of us who have gone beyond the lie. It's not really painful any more. No more than every regular day. It's just that we can see the funeral mask slipping, to show the decaying flesh underneath.


Maya

Saturday, 7 February 2015

Anniversary: fleeing one's country of birth

Last month December was the anniversary of me leaving the Netherlands and settling in Germany. In that time I have been back to the Netherlands only once - early last year - and felt quite relieved to depart again. Having had a year to sort through both my feelings about my country of birth and my new adopted country, I feel at least pretty clear on the point that I have not a single shred of regret for leaving.

While the first few months in Germany I still felt some pangs of longing for certain aspects of my old life in the Netherlands, such feelings quickly faded and throughout the year as I began to both learn the German culture and its language, the feeling of being 'Dutch' practically vanished. There are less than two years to go until I can apply for a German passport and it's something which I am definitely considering. While my Dutch passport represents to me mostly the successful results of my war in the Netherlands - with the name and gender change - I do not see myself as being a Dutch citizen, nor do I feel comfortable actually using that identity.

It's not so hard to realize why I would feel this way when one looks back at the past decades of my life. While it may seem ungrateful and condescending - even pitiful - to condemn one's country of birth, the legacy said country has foisted upon me is nothing short of horrifying. From putting me through over a decade of medical and psychological agony, to mishandling my giftedness in every way imaginable, to blatantly ignoring my pleas for help. Doctors have refused me as a patient, tried to brainwash me into accepting a gruesome fate involving forced surgery, sent the police after me for a severe beating, and so on.

Psychologists have condemned me for faking being intersex, diagnosed me as having Asperger's/autism, laughed at my claims of having suffered post-traumatic stress disorder and held monologues to me in which they ridiculed everything I held to be true, including all that I had learned about my own body and what I thought would be the best course of action. I got put on anti-depressants and other medication, which only served to make me feel more miserable.

While trying to lobby for intersex acknowledgement and rights in The Hague, I was met by a massive wall of indifference.  Dutch politicians do not care about the subject as it doesn't net them any votes. The forced surgeries on helpless intersex infants is of no concern as they can simply point at the Dutch physicians and psychologists who created the protocols that enable this and say that 'they know best'. The Dutch Minister of Health put it roughly in these terms in her last letter to me.

In short, the Netherlands to me represents more than two decades of full-blown agony and both physical and mental torture. The only positive thing to come out of it all was that I got my official name and gender changed, with Dutch judges having absolutely no issues with acknowledging the simple reality that I do not have a man's body and that I am intersex. The latter change was of course enabled only because of German medical help. Despite having found that the German medical system is far from perfect during the last year, it still has earned a modicum of respect from my side for simply doing their duty when I asked them for help with a number of cases.

This year I started on the rewrite of my autobiography, as the previous attempt got stranded in me being unable to express myself and my story in a satisfactory way with the first attempt. While writing merely about the facts of my life is one thing, to actually recall the emotions attached to those events so that one can write it all down in a readable story is far from easy. I think that actually the first half of the story - leading up to my discovery in 2005 of my intersex condition - is actually the hardest, as it involves so many things I haven't really thought about or considered for so long. Going through my childhood, youth and puberty, with the endless pain of confusion, constant bullying and becoming deadlocked without any future.

Finishing my autobiography will be a positive thing, though. I strongly believe it will be so. Having put everything down on paper and having my story published for the world to read should really change my life in a myriad of ways. Not just by having some more weight off my chest, but also by feeling less victimized. Having had to suffer the ridicule, embarrassment and harassment from the Dutch physicians and psychologists for so long, now I have a potent weapon with which I can strike back to exact some justice.

Fleeing my country of birth was the ultimate attempt by me to keep my sanity and hopefully recover somewhat from the horrible traumas I have suffered over the years. It appears that in some ways this has worked out all right, with me being emotionally more stable and stronger than I have been in a long time, despite the so terribly long road I still have to walk before I can honestly say that I am recovering. Stopping the free fall was the first priority and after a long, hard year this seems to have been accomplished. Now I have to claw my way upwards again.

For this year I want to publish my autobiography. I am also working on a visual novel game which I hope will bring some attention to the plight of those who are born intersex. This game I hope to publish later this year as well. Both of these are ways to strike back at a seemingly uncaring society which has turned a simple biological oddity into such a flaming train wreck.

Further I have some people who claim to know some people who can maybe help me out, medically, though I'm not holding my breath on that one. Frankly, after a decade of pure survival, just being able to feel safe and somewhat accepted by my environment is already a huge step forward. The rapidly worsening of my physical symptoms, which I would assume are due to my intersex condition, are however a forceful reminder that time may be running out for me in a medical sense.

I have honestly no idea what my second anniversary will look like, or whether I'll even make it. Life is simply too unpredictable and aggressive for me to make any predictions like that.


Maya

Sunday, 1 February 2015

Terrified to ask for medical help because of nebulous reality

Last Friday I had to call in sick at work, because I could barely get out of bed, with my lower back, lower abdomen, sides and hips all competing for the honour of hurting the most. This wasn't the first time, either, that I had to call in sick for the same reason either. Despite trying to ignore the pain and manage it at work with painkillers when necessary, I still have to call in sick on average I would say about once every one or two months. Last December, during my Christmas break, I decided to try to find some medical help for this monthly reoccurring issue, starting with a GP visit, which I wrote about before.

My GP advised me after finding nothing out of the order with a quick ultrasound of the abdomen to make an appointment with my gynaecologist and see what he could suggest in terms of examinations. This is where things get kinda sketchy for me, mostly because of the many and wildly differing interpretations of my abdominal physiology.

The first time I met with my gynaecologist it was to get acquainted and to discuss my current hormone therapy, also in relation to the monthly pains I was having. He was quite intrigued by my story, as I am probably the first intersex woman he has ever had as a patient. Also part of this appointment was a simple blood test for which some blood got drawn, and me handing over copies of my medical file and MRI scans. I got the estradiol part of my hormone therapy switched from an oral medication to a gel-based, transdermal form, as this was healthier.

That was all fine, I guess. The second and so far last appointment was scheduled because of the severe monthly pains I was having early last year. The gynaecologist performed an ultrasound (internal) to see whether he could find any clues. That examination was in many ways humiliating as it involved (yet again) having to undress for a doctor and in a sense being violated, even though I knew it was for a good cause. Yet the worst was to then have the gynaecologist not find anything and me imagining that I could feel the doubt about my story creep into his voice. Was I telling the truth when I told him that I am intersex and a hermaphrodite? Do I truly have a monthly cycle or have I just been suffering from this extreme psychosomatic pain that I have been projecting on my body since I was eleven years old?

Since that time I also had the surgeon who was supposed to perform surgery on my female side go silent after planning the surgery date, and the disappointing and abrupt report and communication cut-off with the hospital in Tübingen regarding the MRI scan I had there, coincidentally after they had been in contact with a Dutch physician who most definitely knows me, as the last time I saw him was at the medical disciplinary commission hearing in Amsterdam, two years ago. My gynaecologist most likely knows about all of this and the fear I thus harbour is that he'll trust my story even less.

Considering how little I trust said story myself and feel like I understand anything about this body of mine works, that makes the step to make an appointment and face this gynaecologist again more than just daunting. I'm terrified to be rejected by him, as so many physicians have rejected me in the past, and feel that I'm being punished for not having the right answers about my own body.

Meanwhile the current monthly cycle started for me over a week ago, with the usual sharp pains for a day, then about a week nothing and then the lower abdominal and back/hip pain. Even though it's a lot less severe now that I am back on the pill (thanks to my GP), the symptoms are still severe. It also feels as though my body is still processing whatever happened during the couple of months that I wasn't taking the pill and had days of such intense abdominal pain that upon returning home from work I could only throw myself on my bed and cry for a while from the pain.

One very characteristic part of it all is the discomfort and severe pain in the area where the vagina would be located. For 1-2 weeks I'll have the feeling of discomfort with some days (especially when not taking the pill) of the area being completely inflamed and swollen, with any form of touch on the skin or any bowel movement being sheer agony. It all fits the usual menstruation pain symptoms, though with any vagina blocked off no way for any fluids to exit, thus possibly causing severe irritation and inflammation. I'm not sure that's what's happening, but it sure feels that way.

One possibility which I hope is not the case is that of endometriosis, which is the presence of uterus lining tissue outside of the uterus. This generally involves severe, untreatable (chronic) pain. One major characteristic of this condition is that it turns any menstruation cycle into a roughly 3 week continuation of agony, as the body struggles to deal with this rogue tissue shedding discarded tissue in parts of the abdomen which never evolved to deal with this. As I'm not sure at this point whether or not I a) have a usable vagina which b) plays a role in all of this, or c) where this uterus tissue might be located since d) I likely don't have a uterus or similar.

And of course e) whether I'm just imagining this pain and feeling the sudden cramping in the abdomen, my hips hurting like hell for a day straight or my lower back feeling like I went completely through it, etc. etc. is all just in my head. Because I want attention, or I'm a lying bastard without realizing it and just seeking validation.

I really wish I could get the answer to (a), as it'd help with getting (b) and (c) answered. It's proven to be almost impossible to get any clear answer on this, with Dutch doctors outright denying that I have any signs of female genitals, German doctors agreeing that I have at least a form of intersex if not outright hermaphroditism, but the latter still refusing to take it further using more extensive examinations, exploratory or reconstructive surgery.

So in the end I'm still left facing the inevitability of making that gynaecologist appointment, informing him of my findings and hope that he a) still believes me, b) still wants to help me, and c) knows of any useful examinations which he can arrange.

God, I hate being intersex so much...


Maya

Choosing for one's children: medical necessity and harm

As I write this, the USA is experiencing its first measles epidemic in roughly fifteen years. Fifteen years in which every US citizen, adults, children and infants alike, could be confident that they would most likely never have to experience the consequences of a measles infection. As recent as the late 1950s - before the measles vaccine was introduced - about 450 children a year would die from the measles, with another 4,000 developing encephalitis which all too often resulted in brain damage, blindness or related. In contrast, serious complications from the measles vaccine (MMR) occur in less than one million children who receive it and even this is rarely fatal.

In light of all this, it then seems astounding that parents would choose to not have their children vaccinated against measles. Why are they so horrifically cruel that they'd willingly and knowingly risk their child's life and health in such a callous manner? Is it mere ignorance? With the US having turned decisively anti-science in the past decades, faith in what scientists and thus medical professionals as well say about vaccination is thus regarded with more scepticism than seems acceptable, while wild-eyed, unsubstantiated claims made by fraudulent doctors and ignorant celebrities are embraced unquestioningly.

It all seems to be part of a wider movement within society, where one insane diet after another takes hold. From gluten-free, low-carb, paleo, raw-only and so on, despite there not being any science to back up the benefits of such diets, thousands of people eagerly embrace them and proclaim their benefits. The focus seems to be on 'natural foods' being good and anything else being 'unhealthy', even though this statement is - even at face value - too ridiculous to even begin to analyse. Nothing we eat today can be called 'natural' in the sense that a farmer from a few thousand years ago would not recognize most, if any, of the crops we grow today.

Yet science is not reliable and not trustworthy and thus carefully manipulated, monitored and validated crops are shunned in favour of crops whose genetic selection was more of a shotgun method, all too often using forced mutations induced through exposure to radiation sources. The anti-vaccination sentiment is just another chapter in this insanity which seems to find such fertile ground in today's society, fuelled by a media which seems more than eager to tell people what they want to hear.

Vaccines are supposed to be full of 'toxins' and have various ill effects if they don't cause diseases outright. This is a lie eagerly believed by many despite the ingredients of vaccines being publicly known, verified by countless scientists and open to actual scrutiny by non-scientists. This even before we look at the many decades of actual data from vaccine use and the (also publicised) incidences of side-effects from vaccines. Despite all this openness about the facts, people still insist on believing the lies fed to them by frauds intent on making money of their gullibility. That these are parents who will risk their children's well-being based upon these lies is clearly of no concern.

This is also the crux of the whole issue. What business do parents have deciding about the medical well-being of their offspring? Are they physicians? Did they study medicine? In what way, form or shape are they qualified to make this decision for their children on vaccinations? All based on the fact that they are legally registered as the guardians of said children? That appears to be a rather slim justification for a decision which will decide the faith of these children for the rest of the lives, if it doesn't doom them to an early death, as in the case of the American child who already died from measles complications.

I have had to deal with similar questions for years already, albeit from a different perspective. The issue here is that of physicians giving clearly the wrong advice: namely to perform 'normalization' surgeries on children who are born intersex, i.e. with ambiguous genitals. This is an issue where despite the physician in question being supposedly qualified, most astoundingly gives the completely wrong information, trying to push the parent(s) of the child into accepting a procedure which will most likely cause untold sorrow to the child as it grows up into an adult. How can one rhyme this with the earlier situation involving vaccines. Are we right to question physicians as much as we do on vaccines, or are we wrong to not question physicians more on their attitude towards intersex infants?

The answer, I feel, lies in looking beyond the people. Beyond the physicians. Any answer one needs is found in the actual data produced as a result of people's actions over the years. For vaccines we can see an astounding success in the form of an incredibly decrease in deaths, injuries and hospitalizations, as well as one completely eliminated disease (smallpox). Everything there makes it abundantly clear that vaccines are an awesome thing and that we should embrace them, without exception. It's a completely positive thing for children and they should receive all the common vaccines as soon as they're old enough.

For normalization surgeries there's less complete data let alone studies, as it's still very much a taboo subject with the topic of intersex bathing in ignorance, even among physicians. Despite this the evidence seems to back up that these surgeries are virtually always harmful. Especially how the gender is selected for a child is at best unscientific, as one's genetic make-up says absolutely nothing about one's gender preferences, as evidenced for example by transsexuals. The only person in this situation who knows what the right choice is is the child itself and thus the answer here is to wait until the child can state its choice. Neither the parents, nor the physicians get to make a choice here. That'd be unethical and amoral.

The sad thing is that we so readily accept or even fight over whether the parents or physicians are 'in the right', when all one has to do is to look beyond this front and do the science.

Maybe that's the worst tragedy of all among this anti-vaccination and gender-normalization insanity: the loss of faith in science, preferring to pick personal opinion and gut-feeling over scientific facts and data. Neither parents nor physicians get to decide. Only the facts do.


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