Gender dysphoria and body identity dysphoria

Back in early 2005 I found myself watching a documentary on Discovery Channel on the topic of body identity dysphoria (BID) [1]. It followed this young woman who spent much of her time looking for a surgeon who would amputate her legs. Not because she had any medical problems, but simply because it felt 'right' to her to not having legs. She could recall seeing this person in a wheelchair as a child, with that person having the same kind of amputation as she ended up seeking for herself years later.

Not long after watching that documentary I found myself dealing with first the suspicion of me being transgender, quickly followed by the growing realisation that I had to be intersex. The memories of watching those BID sufferers faded to the background, until recently, when I found myself considering BID again, this time in the context of gender dysphoria and similar disorders.

Briefly put, BID is the desire to have invasive surgery performed on one's body in order to amputate healthy body parts, or to lose parts of one's body's functionality. The source of this desire appears to be in the brain's view of the body, with the functionality or parts that are deemed undesirable falling outside of this mapping.

For BID sufferers amputation or induced paralysis appears to be the only real solution, as ethically convoluted this solution may be. This is similar to with gender dysphoria (GD), where those affected will describe a strong desire to have their genitals removed, along with many other characteristics of their body. So-called sex-reassignment surgery involves the removal of one's existing genitals, and the surgical creation of a facsimile approximation of the opposite sex's genitals.

In both cases the hope is that by giving in to the desire for surgical interference, the psychological suffering will cease, and the person can live a normal life again. In the case of BID, the suffering can increase to the point where the person will self-amputate. Both BID and GD are very real forms of suffering, without a clear solution, or cause.


Looking back on the past fourteen years that I spent dealing with my intersex condition, I can see the many choices that I had to make in order to find myself. Most strongly of all, I can see the weird medical attitude towards BID, GD and intersex cases.

With the first, there's little inclination by doctors to assist surgically. With the second it's becoming easier and easier to the point where even children can apply, and with the third 'normalisation' surgery is forced on unwilling intersex individuals - including infants - but actual medical help is not available.

I consider myself fortunate to not have any kind of dysphoria or medical disorder. Yet I'm not blind to the horrific irony that while BID and GD require intense psychological and medical attention and are met with guarded caution, the medical approach towards intersex is one of overly enthusiastic surgical intervention.

With intersex there's no protocol, real-life test, psychological evolution or the like. Nobody will weigh the ethics of chopping up the genitals of an intersex infant, or ask whether it's proper to subject an adult intersex person like myself to psychological pressure to undergo 'normalisation' surgery and to be repeatedly told that I am not capable of making decisions myself, that I should rely on the doctors.

With BID and GD individuals are born with a problem. With intersex individuals are born without a problem, but have problems created for them.

I wish all three groups could get the help that they need.


Maya


[1] https://en.wikipedia.org/wiki/Body_integrity_dysphoria

The future I want

Figuring out what life means to oneself is a big task, one which most people never really get around to finishing. One can just follow the well-trodden path in front of one, feeling okay about the whole deal. To then vanish without much of a trace, never having affected the world much.

For me such a thing has never worked. To me the world has always been filled with possibilities, infinite things to learn and endless ways to improve everything for everyone. All it takes is a little bit of elbow grease and a big imagination.

That's kind of how I ended up starting this new project this year, called the Internet of Plants [1]. Originally just a cute little project to automatically water single plants, it has since drawn in a number of people beyond myself, with the scope expanding to high-density indoor farming, using LED lighting and automated irrigation as well as hydroponics.

This project is now on the verge of setting up its first small-scale growing operation, using about five square meters of shelf space with the goal to grow everything from lettuce and herbs to strawberries, passion fruit and more. Long-term we want to look at reducing costs sufficiently to make it possible to economically grow staple foods like rice.

The reasoning behind this is that if high-density indoor farming were to become cheap enough, it'd mean that food production could move close to where people live, valuable farm land could be freed up and returned to nature, even as food transportation, insecticide and herbicide all become rare sights, with massive benefits to the environment.

With each indoor farming operation being a completely isolated and sterile environment, there would be no run-off of fertiliser and the like into the environment, and crops could be grown anywhere, any time, with minimal loss and other compromises.


What excites me about this project is that it is both very taxing on those working on it - combining fundamental R&D, biology, physics, engineering, electronics and many more disciplines into a single project - yet the potential pay-offs are likely to be massive.

Over the coming years we could slowly begin to change the world economy, resolve many causes of food scarcity and related issues, while providing the technology and documentation for it as a fully open project. Truly, it's not meant to make a buck off anyone, only to make the world a better place. Not just for ourselves, or me alone, but for everyone.

To protect the environment, give countless people a better, healthier life and ensure that humanity's future on this planet for the coming centuries has been ensured, while putting a stop to countless destructive practices, such as the environmental destruction of habitats for the creation of farmland.

To me, this is the kind of project that truly excites me. Something that has meaning far beyond me, a hackerspace, a company or the next board meeting. This is what I want to do with my life. These are the kind of projects that I want to work on, together with other like-minded individuals.


The sad thing there is that as the preceding blog posts over the past years have made abundantly clear, I cannot see a clear path to this future. Many times I have thought that I was close to a break-through that would get me out of my current predicament and get me that quiet, peaceful life in which I can focus on making this future a reality. Instead I am still forced to fight for my life, fearful of slumlords and yet another knock on the door from police officers or others to either misguidedly 'help' me or inflict more suffering.

I cannot really think of any future this way. Not when my mind is frozen in fear just thinking about what horrors tomorrow might bring. I could have gotten any of those jobs this year and things would have been different, but for some reason I didn't. Maybe it's that I am intersex or that I have PTSD that makes companies afraid of hiring me. Maybe it's just that my way of thinking is too different and unsuitable for just focusing on developing the next iPhone or cloud-based webservice, soon to be forgotten or never even relevant to most of the world's population.


Hopefully I can still find the path forward from here to that future. I think it would be cool, and I hope others agree with me on this. Though my one success this year was to get hired by Hackaday to write articles for them [2], it's sadly not the kind of job that easily pays all of the bills each month.

Perhaps such kind of (remote) jobs are the things that suit me best: jobs which require a lot of independence, responsibility and ability to wing things successfully. I just haven't figured out yet how to turn this realisation into a path forward.

As always, help is more than welcome.


Maya


[1] http://www.nyantronics.com/iop.php
[2] https://hackaday.com/author/mayaposch/

Mental healthcare: madness within and without

A major part of me is still this five-year old child, lying curled up in that dark room, sobbing to themselves as the harsh, loud voices of those adults resonate in their ears. As the sensation of their hands groping, grasping and pulling on their body doesn't seem to want to fade.

It'll always be my fault. I'll always feel that I am the problem, that I just have to make things more difficult than they should be. How could I deny such an obvious fact?


Childhood abuse trauma is still special kind of madness. Left unacknowledged and untreated, it comes to define one's very existence as a child, as a teenager and finally as an adult. It means feeling unable to establish an emotional connection with others, as well as a general inability to rely upon and trust others.

It means struggling with a lack of self-esteem and of being overly critical of oneself. Of feeling that those adults back then were right to blame it on us, on somehow being responsible for the horrors that they inflicted upon us.

In my own situation, I wasn't aware of what had happened to be for the longest time. Not consciously, at least. It was always there, affecting my behaviour and life from right after those childhood events until the memories began flooding back, decades later.

It's horrible to see how much those events have changed me as a person, and affected my life. From turning that happy, carefree child into this withdrawn, quiet child who wouldn't even let their own mother touch or hug them, to the young adult and finally adult who simply could not get over what had happened. Who would remain stuck in that dark room, crying and feeling too terrified to move, let alone leave that room.


The events that happened after the initial traumatic events served to feed and reinforce it. From getting bullied during most of my time at school, to later having doctors and psychologists try to make me believe that I had to be transgender, or simply crazy, dismissing my intersex condition as an infantile fantasy.

Finally living together with an abusive flatmate for months with things totally spinning out of control at the end and losing all of my money and possessions. Months of being told how everything was my fault, how I wasn't doing enough and was weak and incompetent.

Then years of dealing with slumlords after moving to Germany, having them play the 'justice' system like a fiddle to make my life hell and drive me ever closer to either accepting homelessness or seeking to commit suicide once more. Of course everything is always my fault. It's pointless for me to hope for a better life, as me being alive makes things by definition worse. Such happy thought processes.


That last situation leading to me ending up at the psychiatric hospital for a few days recently. Not that this was the first encounter with mental healthcare, of course. I had seen plenty of this back in the Netherlands already, and had just stopped seeing my regular psychotherapist after one and a half years of weekly appointments, on account of this therapist constantly retriggering severe post-traumatic stress disorder triggers without seemingly understanding what was happening.

I'll be the first to admit that there's this madness inside my head that I keep struggling with, every day, with the darkness trying to claim my every thought and action. Some days there's too much darkness, because of other people's actions. Not because I want to feel like that.

Being at this closed, high-priority psychiatric ward was... a different kind of madness. While there, I was stripped of my identity, of any freedom and choice, while limited to this one, shared room and shared facilities. Shared with others who were struggling with their own madness and darkness.

There was the bossy woman, who seemed to be living some kind of fantasy, the tall guy who seemed to be mostly trapped inside his own head, always talking to himself and sometimes screaming for hours during the night. The girl with whom I shared the room had this massive burn on her left hand. It seemed like she could no longer use that hand, and was completely withdrawn into herself.

There were others. Each different. Each making me want to get away from that place. To return to the outside world, with the people whom I felt are more like me. Who show me the brighter parts of life. Not these shambling wrecks of human beings, who through no fault of their own are kept inside what is essentially a prison, where they are surrounded by the madness of others. Slowly forgetting what it is like outside, in society.


I am glad that I am no longer in that psychiatric hospital. For now. I hope I won't ever have to return there. But there are people here, outside the hospital's walls, who bring darkness. Who make one feel that life is about suffering and loss. That life maybe is too hard, that one cannot do it. That's it all too much, too painful.

I want to get away from this darkness. To get away from this current slumlord, to get that job, follow my dreams and ambitions, make more friends and hang out with the friends I have. To feel alive and happy.


Yet I fear that all there will be for me is the darkness of that silent room, with five-year old me lying on the floor. Alone, sobbing. Right before I give up for good.

I wish I could see the light.


Maya

Depression: the not so cute version of procrastination

A couple of days ago I watched this TED Talk video on procrastination. It covered the fine balance between the responsible side of one's ego and the part that is more interested in having a good time, the 'monkey'. Most of the talk was about how important it is to keep the monkey restrained, lest one ends up spending hours watching fun videos or browsing Wikipedia.

This made me think about how this all works for me. Those many days spent just aimlessly clicking around on the internet, working up the motivation to do anything, was that the monkey having fun instead of facing up to the obligations in life?

The thing there is that I did not and still do not have fun while fighting against this procrastination. It's more of a struggle, trying to get myself to a point where I can do anything at all, while feeling the weight of my existence and all that I'm failing at threatening to crush me.

The ironic thing there is that I have never been the type to procrastinate. As a child and teenager I was always working on big projects with seemingly endless energy. Then, starting with my parents divorcing and moving around the country that all began to change.

I still tried to continue projects within the limitations of losing access to the farm's resources and space, but as the pressure to resume studying or get a job increased, I abandoned most projects in favour of self-improvement projects, from driving lessons to figuring out my next steps in life. This mostly resulted in me slipping into a bad depression.

Cut off from the environment where I grew up, without any clear goals in life or how to start feeling happy again, I simply drifted along for a while until finding out about being intersex. To me that seemed like the key to solving a lot of issues and questions I had about myself. I would get medical help, get answers, maybe surgery or something, and things would work out.

Fourteen years later I still don't really have answers, and have many more questions than those with which I started. Worse, because of the treatment by doctors and psychologists, I now have severe Post-Traumatic Stress Disorder (PTSD). This is like depression times a thousand.

How does one keep motivated when one is beset by depression? When the expectation is that no matter what one does, it will just backfire? That everything which one attempts or does is futile? When one feels as if there's no point to one's existence, and it'd have been much better if one had never been born?

No monkey there, more like this black monster that sits on one's shoulder, discouraging and harassing one. Why even start that task when you know it's futile, or won't work anyway? Or maybe it's just that you know that you are incapable of doing it, or will just screw it up, or others will do a much better job, regardless of how many times you managed to pull off that same task with great success.

It's still procrastination, but unlike monkey-based procrastination here forcing and nudging the affected person will not help. Instead counteracting the black monster will have the best effect, by giving the person back their self-worth, their sense of reality and with it their reason to live.

It's not that we do not want to, it's more that we physically cannot, unless someone else gives us that little push and assists us so that we can get away from the black monster and with it the feeling of being incapacitated.


Maya

To let oneself be carried off by the current

Working long hours, rushing to make deadlines and still not feeling like one is getting anywhere. Going through job interview after job interview only to get rejected. Dealing with the crippling psychological impact of a looming eviction and the prospect of abandoning everything once more and resorting to the charity of others. That's my day to day life for months now.

Somewhere in the background is still the constant pains and discomfort of my body, even as it keeps going through physical changes, from the gradually vanishing scars and subtle changes to my face and skin in general, to the general development of female secondary characteristics. None of it explained, none of it making sense, no clue as to what will happen in the end. Is this just a normal puberty?

I can feel my sense of self, my ego, vanishing in the midst of this. My body is in flux, nothing around me in my environment is fixed or certain. I know what person I think I am, and what I want my future to look like, but all paths have been closed off, with no way forward. There's just waiting.

It feels so pointless to keep struggling, to wish for a better future. Even after so many years I have come little closer to my goals, or found a home.


Two weeks ago I found myself taken to the local psychiatric clinic by the police because my social worker was worried about me after a few remarks in an email I sent to her. I ended up staying two nights there, because they were afraid that I might hurt myself, or worse. I was let out during the day of the second day there, however, with the promise to return by dinner time. I was let out again on the third day, with the recommendation to visit a psychiatrist at their walk-in clinic.

Honestly, I do not want to hurt myself, or even end my own life, but this sense of pointlessness and futility is making me feel ever more disjointed from this body and my perception of reality. Thus I feel torn between the fun and interesting things in my life, the future I want to work towards to, and the strong desire to just give up and let all of those who wish me to vanish get their desire.

This body feels like a hindrance. I don't want to have to think about where to house it, how to feed and clothe it. How to deal with its changes and pains. Its mortality. I cannot comprehend human society. It all feels so wrong and distant, like a tune that's ever so slightly off-key.


There's still my third book to finish, a job to find, a home to find and move to. An eviction to avoid and chronic stress, PTSD and worrying abdominal pains to ignore. The question of whether this is possible at all doesn't apply, nor whether I still have the energy to continue. There's no choice, no freedom, no pity or empathy. Just the choice between continuing this struggle and giving up.


I'm still struggling and hoping, but it's so hard.


Maya

To struggle for survival

What I want my life to look like in the short to medium term: to live somewhere quiet, work a day job to make money, write books and work on my software and hardware projects in my spare time. Finally get those robotics, AI, asynchronous CPU architecture and similar projects into a usable state. Have my autobiography published and hopefully change forever life for all intersex people around the world for the better.

Instead, where I am now: being thrown out of my current apartment despite having paid all my bills and not caused trouble. Not having a job despite many months of applying and flying all over the world for on-site interviews. Struggling to finish my current reference book within the deadlines as the full-time job search and dealing with depression and bouts of suicidal thoughts make it almost impossible to be productive.

Each day my situation feels more hopeless. The hope for an easy resolution to my situation has died months ago. With each new rejection after a job application or simply a lack of response it becomes ever more clear that my existence is optional and in no way required or essential.

But to survive is not about feeling comfortable. It's about still dragging yourself forward through the mud and freezing rain even after you have broken both legs, had an arm crushed, running a fever and almost delirious from the pain. All in the hope that things will get better if you keep going. For how long? Until you collapse and die.


While trying to find a job and with it the relocation help I seek, I am ignoring the worsening physical pains and warning signals by my body. At this point endometriosis seems almost certain, with peritonitis (inflammation of the lining of the abdominal wall) providing a clear explanation for the generalised abdominal pain and extreme abdominal swelling at the end of each monthly cycle. This in addition to the extreme and localised pain in the perineum around the same time, which would also be triggered by the blood and/or other fluids that get released.

Of course I have tried to find help for this during the past years, but without luck. And now the symptoms just keep getting worse, possibly also due to the stress that I'm under as a result of my current situation.


What will happen next? I do not know. I may get lucky and my wish for a more quiet, predictable life may come true next week after yet another on-site job interview. Or not, and I can keep struggling to somehow find that way out of this Hell. Yet I am terrified of this dark side, this voice that keeps pushing me to admit defeat, to give up and terminate this impossible existence.

Am I meant to exist? Hermaphroditic intersex people like myself are very rare, because most times embryos merge like that, a miscarriage results.

I don't even know what I am. Who I am. I'm still in the process of trying to make sense of this body of mine. Of what has happened so far. To somehow deal with the trauma of the past years, even as I try to move forward.


What's fair?

This is survival. There's nothing fair about surviving. It's when everything has gone wrong to the point where one's existence has practically been lost already.

I want to survive this. I want to move on, to move forward, but the deck is stacked against me. With the incredible physical and psychological pain combined, this makes it seem all too tempting to give up. That's my fear.

Like seven years ago, when I also found myself in a similar situation, I didn't know what to do and everything was hurting. That was when I remembered the two boxes of sleeping tablets which I had in my room. They were the only real way forward which I could see. I was so happy that I had found a solution. Something which I could do, instead of just letting things happen to me.

I slept really well after I realised this. The next morning I got up all cheerful and feeling extremely calm and at peace with everything. The pain and agony that I had been feeling inside for what seemed like years had all vanished. There was no hesitation as I took all of the tablets out of their packaging and swallowed all of them with some water.


I still feel that things should have ended there. Me having been born still feels like a mistake. Me not dying seven years ago feels like a mistake.


Yet I still want to live. I just want... no, what I need to live is for all of this pain to be taken away by others. The pain of being unwanted and unneeded, of being the cause of problems and just a collection of unfulfilled promises and regrets. For people to trust me, instead of seeking to betray and discard me. To accept that I have a traumatic past, but that things will be fine once I'm in safety.

If not, then there is no stack of sleeping tablets available to me. Yet the temptation remains. I don't know what may happen if this dark, traumatised part takes me over again. The point where I will have lost the fight to exist in society, in this life and also the fight against the traumas from my past.


Even as I prepare for yet another attempt next week to make this future I want work out, I notice how much my attitude has shifted over the past months. From feeling hopeful and quite certain that things will work out, to pessimistic and downcast in addition to feeling exhausted as I struggle to care about the fact that I am still alive. And still surviving.


Maya

Let's talk inclusivity in the tech industry

This year has been a weird one. After leaving my previous job at the end of last year I have undergone a number of medical procedures:

• 3rd MRI scan at the neurologist for the cyclic weakness and pain in my right leg and arm.
• appointments at the proctologist and gastroenterologist for the abdominal bloating and pains.
• cycle monitoring and laproscopy surgery at the gynaecologist to gather data on my intersex condition.

Even after nearly fourteen years, I still know very little about my body, and finding specialists who got a clue and/or show interest is so hard that I envy those who are merely seeking for needles in haystacks. Currently I'm suffering more and more frequently from nausea during each cycle, though the sciatica (pain and weakness in my right leg) seems to have mostly gone away, indicating that things are changing.

After my body suddenly started undergoing its first proper puberty in 2015, with a dramatic increase in female secondary characteristics, it's been a confusing and harrowing time for me. I do not understand what is happening with my body, and how far it will keep developing like this, or whether there'll be any consequences of such a delayed puberty.

I know that my natural female hormone levels are pretty low for a woman, but adding additional hormones result in the symptoms of estrogen overdosing, so this is apparently the level my body is now comfortable with. I have also noticed old scars changing, wrinkles fading and of course the fat distribution in my body shifting around again, as if the hormone therapy I used to be on did just about almost nothing. Nothing about this makes any sense, and there's nothing in the literature that may help me with this. My best and only help so far seems to be one of those cycle tracking apps, allowing me to at least gather some data on the symptoms while giving me at least some useful hints and tips.


Oh, did I mention that I'm looking for a new job?

It's been eight months now since I started my search for a new job, and collected a few dozen rejection notes in that time. I'm supposed to have a new job by next month according to the lease extension I got for my current apartment, or I'm looking for a new place to stay. Worst case I'd be forced to return to the Netherlands without a job and no place to stay. After the 11 years of horror that I went through there, that's the last thing I want or can deal with.

I'm frantically working to catch up on the deadlines for my upcoming book on embedded C++ development, which I started on earlier this year. Fortunately my second book on C++ multithreading that came out last year is selling well. Combining writing a book with the job hunt and dealing with my medical condition is hard.


So, inclusivity.

It's a big word, which has been thrown around a lot the past years. Basically it means that everybody gets an equal opportunity, regardless of their circumstances. Sounds great, doesn't it?

Naturally, no employer who has rejected an application of mine has said why they did so, or gave any specific reasons. How would one even know whether one got rejected due to one's medical condition, circumstances of birth, or having opted to pursue medical help over a career?

I could be totally wrong about this, but at the same time I cannot exclude the possibility that after doing my best for months now to get hired, and having literally flown around the world for a multitude of on-site interviews, that in the end the primary reason why I do not get hired is because I'm an intersex individual. Someone who is open about it online, even.

Since I have no guarantee that this is not the case, and my professional experience should at least give me a fair shot at a job, it's sadly becoming a question which I and others are beginning to ask more frequently now.

Am I not getting a job because I am open about being an intersex person? Is the very fact that I'm intersex a factor in getting rejected from job applications?


It could just be that I have wasted all those years on not pursuing a career which is coming back to haunt me now, since employers do not like gaps in one's education-to-jobs timeline, but 'maybe' and 'possibly' aren't of much comfort here. With zero feedback from any job interview as a rule, one is left grasping in the dark for clues.

I like to think - and others confirm this - that I'm a highly dedicated person with a keen interest in science and technology, who is friendly and helpful, and more than willing to learn new skills for a project or job, while always being ready for a challenge.


It's hard to not feel like this is where inclusivity in the tech industry falls flat. Someone like me is different, yes. I have taken a course through life unlike what most people will ever experience in their entire life. Yet this should make me a unique asset to a team. Not a liability. Yet that's what it feels like.

Like I'm back in primary school, getting bullied and excluded for being 'different'. Ditto for my later school experiences and so on. Ironically those experiences taught me the value of communicating with others, even if it had to be initiated with one's fists. Some of those bullies actually became my friends later on. Yet back then I didn't know I was intersex, nor did anyone else. Being gifted was already enough of a struggle to deal with.

I got through all of those years. I got through the past thirteen years mostly unscathed, even when it seemed as if my body, doctors, psychologists and the rest of the world were all against me. There was always someone there who offered me that one chance to move on, which I accepted even if it meant more big changes and massive effort on my side.


I just wish someone would give me that chance now.


Maya

Thus we go on

All of us are living, breathing, human beings, with complex feelings and emotions. All that we differ in, is in how much we accept these, and with it ourselves.

When I got bullied and beaten up during almost every year that I spent at school, I never blamed or felt hate for those who hurt me. I bore it as one does everything in life which one cannot change. If anything, I felt sorry for those who are so conflicted and damaged inside, that they can no longer feel their own feelings.

When I got told over and over by doctors, psychologists and others that what I was observing about my body being intersex was merely in my head, I felt frustrated at how they just didn't want to see what was in front of their eyes. I felt sorry that they had become ensnared by their ignorance and obsession with falsehoods.


All of us are living, breathing, human beings, with complex feelings and emotions. We are capable of inflicting enormous damage upon others by closing ourselves off from these.

One bears the effects of the flaws of others, even as one does their best to help them see their flaws, so that they can work on repairing them. One never blames others. Just oneself for not grasping the exact nature of the flaws of others and being unable to help them.

Even as I prepared to take my own life in early 2011 I didn't blame anyone. In the end I was taking my own life so that I could live up to my own inadequacies. Those I would be leaving behind would understand and accept that I was now in a better place.


All of us are living, breathing, human beings, with complex feelings and emotions. We can bring unimaginable joy to those around us by realising their emotions and feelings, and acting upon those.

When my suicide attempt failed, my mother was there to give me a new chance at life, even as almost everybody else dropped me like I was poison. Slowly I recovered and things began to look up, with concrete gains in figuring out my intersex condition, and ultimately me getting started on my career as a software developer.


All of us are living, breathing, human beings. We can destroy others without so much as a single caring thought.

I do not feel hate or animosity towards the owner of the apartment or the court which saw fit to remove me by force if necessary over their lack of communication about when an earlier agreed-up rent reduction would stop. That would be like trying to argue with an avalanche or pyroclastic flow, or any other force of nature.

I feel that I have failed in some way again, by being somehow inadequate. For having missed something obvious and failing to act on something which anyone else would have picked up on. I know with great certainty that I am the problem. Somehow.

Every rejection during now half a year of applying for a new job simply reinforces this notion. The world is fine. Other people are fine. I just missed something obvious and as much as I try to figure out what this thing about myself is that I should be changing, I do not understand.


All of us are living, breathing, human beings, with complex feelings and emotions. We can choose to end our lives at will.

I fear that it has taken me too long to figure what I did wrong. I fear that it is now too late.

Too late to keep living. I simply wasn't good enough. Not fast enough. Not smart enough. Not lucky enough.


Even as I have found myself once again begging to have people give me another chance, I am beginning to find it exceedingly hard to keep up this charade that somehow I'll turn into a real person.


I don't feel real.


Maya

Watching movies on transatlantic flights, or: don't cry in public

As I'm typing this, I am sitting in my Cupertino hotel room, in the very heart of Silicon Valley. On Monday this week I travelled to Canada, for an on-site job interview there. After the Tuesday interview, I travelled to San Jose on Wednesday, where for the past two days I had additional job interviews. In a short while I'll be taking a taxi to SFO to travel back to Europe.

On the flight back I expect to be watching in-flight movies again, just like I did on Monday. During that flight I immediately dove into the Chinese and Japanese movies sections. Though fairly limited in the offerings, I ended up watching one Chinese movie (of which I do not remember the title any more), and two Japanese movies.

Of the latter two movies, 'The last shot in the bar' (Tantai ha bar ni naru 3) [1][2] was a really fun yet still serious Japanese detective movie combining both slapstick elements and intense emotional scenes. By the end of the movie I found myself definitely engaged and interested in how things would work out. The twists the movie threw at me were not obvious and improved the story immensely. I have to watch the first two parts now, for sure.

The second Japanese movie was ゆらり ('yurari', English title: Last Night Rewind) [3][4]. This is a movie that was adapted from a theater play, and one can definitely notice this in how the scenes are put together. This is absolutely not a negative, however, as it allows one to focus on the characters. The movie description made me expect a different kind of movie than what I ended up watching.

Basically, this movie is far better than what I had expected, with the struggles of a number of characters from a couple of families followed as they try to work things out. The first resolutions are emotionally intense, but they are just the beginning. This was the movie were during the final scenes and afterwards I had to fight to not burst out in tears.


Watching an emotional drama in public is slightly awkward at the best of times. In a cinema everyone is at least watching the same movie, so everybody is likely to respond the same way. In a public space where it's just you watching the movie, awkwardness increases exponentially.

Not having to hold back may make a movie even better. Just letting those tears flow freely while experiencing the crushing emotional depths of the story, instead of having to keep them in check. I think this is a good reason to rewatch those movies at some point in a more private setting.

I'm curious to see whether there's a new selection available on the in-flight entertainment system as I fly back in a few hours. And then of course to see how my own story will continue, as I receive the feedback of this week's job interviews.


Maya


[1] http://asianwiki.com/The_Last_Shot_in_the_Bar
[2] https://www.imdb.com/title/tt7058618/
[3] http://asianwiki.com/Last_Night_Rewind
[4] https://www.imdb.com/title/tt7246944/

Vlog: Flying and soaring, or...

• On getting evicted.
• Maybe a new job and moving.
• Working on my autobiography, part I.

Maya

Being evicted next month

Today I had my psychotherapist guide me through the findings of the court in the eviction case against me. The news is pretty bad. Not only did the landlord get the okay to evict me without any further pause after the appeal period ends early next month. I will also have to pay a considerable fine. The total amount that I may stand to pay including lawyer costs and such would be about 10,000 Euro.

Naturally I have made use of the appeal option, with my therapist writing a new report on my psychological state because the first one got rejected on account of being 'too old' and 'not reflective of my current state'. This letter makes it again very clear that an eviction at this point would likely lead to strong suicidal feelings and a likely new attempt.

As during the therapist appointment I suddenly... seized up and found myself convulsing on the floor on account of the flood of emotions, after first resisting the urge to claw open my own throat, I would agree with this assessment. I'm barely holding things together as is.

It seems that the court here has managed to not only ignore the available evidence, but has made no effort to consider my fragile psychological state, or my unique position as a minority (intersex). All of this over a lack of communication from the landlord's site that led to me continuing paying 10% less rent as agreed. All I got were bills with increasing fines, with my attempts to communicate going ignored.


As I mentioned in my previous post, I really hope that I can soon get that new job and move to the UK. With all of the negative things that are going on at this point I'm not sure how much longer I can keep things up. I'm longing so much for a normal life, working an interesting job, having a pleasant home and hanging out with friends. Also receiving psychotherapy to deal with my PTSD, this time without living in an environment which just worsens said PTSD.

Maybe coming to Germany was a mistake after all.


Maya

The child, the adult, the tears

The child who's crying in the dark room, as the sound of the angry man's voice still reverberates in their mind. The sensation of adult hands painfully clasping around their limbs and grasping at their body remains, as does the realisation of being all alone in the world. None of this is right. None of this will get better.

The same person, years later, finding themselves back in that same room. Crying. Feeling the pain all over, as they anticipate the next act of violence. What can one do but submit oneself to those adults? You're just a child. They know better. They have the strength.


Dealing with post-traumatic stress disorder is... well, you're not really dealing with it. Especially for childhood traumas it's just something that is there. It's become such an integral part of who and what you are that it's almost inconceivable that you can ever change.

I know that all of those horrible things which I remember, all of those sensations, that they are a thing of the past. That those adults who hurt and harmed me can no longer do so.

Yet today as I got the conclusion in the eviction case against me, I'm right back in that dark room, crying and feeling violated. I haven't even looked at it beyond the summary provided by my lawyer, and I'm already in such a state. I will have to wait until tomorrow, to read through it together with my psychotherapist. It's too dangerous for me to do it by myself.

Even though I already know from the summary that I can stay in this apartment, just nothing about any fines yet, it's not about those details. It's about the experience, of being dragged through the mud for two years, of having my integrity as a person question and having felt terrified for all that time that something horrible might happen to me any day now. Of feeling adrift and uncertain about my future.


If there's a bright spot in all of this it has to be that my search for a new job may have resulted in me scoring something pretty close to a dream job. Next week I'll be flying over for an on-site assessment. With any luck I'll not only get the job, but also assistance with finding and moving to a new home.

I'm honestly looking forward to this, and the positive impact it would have on my psyche. In some ways it'd feel like a little bit of justice still exists in this world.


Maya

A person's path to happiness

Surging blackness, coursing through one's mind
Overwhelming pain that blinds one to reality.
Just this feeling of bleakness,
The futility of existence.

Glimpses of other people, living
Lives which are so easy and filled
With carefree attitudes, which
Brush off anything negative in life

Sorrow using its razor-sharp claws
Tears apart the very essence of who and
What I am, until nothing remains but
A shadow of who I once thought I was.

Nothing left but these tears which flow down
My blood-streaked face, but whose blood?
I do not know anything, it's all
A blur, all of my memories.

Warmth, the promise of happiness,
A care-free life, free of this endless
Suffering that makes every one of
My smiles seem fake, like plastic.

Could I truly be permitted,
Feel this terror subside,
Embrace a sensation of safety,
Even if it's just an illusion?

I see others, smiling
Laughing and dancing with
Hearts that are unburdened by
The tragedy of existence.

This horrible feeling that once
I could have been like them.
No more, paradise lost, innocence
Perished in a dark alleyway.

Yet I smile, laugh, even though
It hurts so much inside.
Telling myself that it's much worse
Inside the confines of my thoughts.

There will always be sunlight,
Happy people, laughing and dancing.
There will always be darkness,
Sad people looking from behind bars.

Some people cannot be happy, as
It is not permitted for everyone
To be happy, to maintain
The tragedy of existence.



These bars I find myself behind,
Are they of my own making?



Happy memories of sunshine, of walking
Barefooted on grass, looking forward
To a long Summer holiday, fondly recalling
What seems like a torturous lie.


Sunshine.


        A sun-shaded path.
       
       
A promise, far away.
Walking barefoot on
A gravel-strewn path.
Any day now.


        Ignoring my blood,
        Splattered on the path
        Behind me.
       
       
Almost there.


Maya

The big talk on intersex: video now online

Yesterday was my talk at the Gulaschprogrammiernacht as announced in my previous post. The video recording [1] of the talk is now also available for your viewing pleasure:

The slides can be downloaded or viewed online [2].


Maya


[1] https://media.ccc.de/v/gpn18-126-how-the-internet-has-changed-being-intersex
[2] https://drive.google.com/open?id=1kjRUuTGqjikP2Ik95g4NsVktEcSQoBMZ

My big talk on intersex next week

Next week here in Karlsruhe, Germany, the 18th installment of the so-called Gulaschprogrammiernacht (Goulash Programming Night, GPN18) [1] will kick off on Thursday with a large number of talks and workshops over its four day duration [2]. For this year I also submitted a talk, which got accepted [3]. I'll be holding that talk on Friday the 11th.

Not a big shocker is that this talk will be on intersex, but not just that topic. My goal with this talk is to let people see how being intersex gradually became a part of my life, with technology - and particularly the internet - allowing me to stay more or less sane throughout the whole ordeal that would follow after the initial discovery. I'll be holding the talk in English, and it will be recorded for later public viewing as well [4].

In some ways holding a talk like this is more difficult than just going on a live talkshow with millions watching. With the latter you can just wobble into the studio, act all cool, respond to the questions of the host(s) with flair and grace, get that standing ovation and wobble out of the studio again while feeling pretty good about yourself. Oh, and the make-up session beforehand. Love those.

When you do your own talk, it is you who has to prepare everything, plan the time, schedule and ready any images, slides and other materials. And then improvise nearly an hour of chattering about a really big topic without tripping up, technical issues, stuttering, awkwardness or sudden unscheduled rapid descents off any stairs or platforms.

So basically I'll be totally fine :)


Only thing which I'm not really looking forward to is receiving the judgement on the (baseless) eviction case against me on Wednesday. Things like that do not really help improve one's mood, to be honest. My hope there is that it's not such a bad judgement, so that I can take a relieved feeling to the talk on Friday, along with a positive result from the next chat with someone from Amazon earlier next week.

I can kind of picture this as my last hurrah in Germany before I declare my efforts to receive medical care as an intersex person a loss and move on to greener pastures with a new job, advancing my career and possibly building up those crucial contacts I need to sort out the last remaining issues from my life as a nobody.

Would make for a great film, at least.

*Scribbles down some notes for her autobiography~*


Maya



[1] https://entropia.de/GPN18
[2] https://pretalx.entropia.de/gpn18/schedule/
[3] https://pretalx.entropia.de/gpn18/talk/SZMAYU
[4] https://media.ccc.de/

Glimpses of a normal life

This whole intersex/medical thing is something which is like an annoying mosquito: even if you want it to just go away, it keeps coming back. Ignoring it will just let it get you in a different, nastier way. Me trying to ignore the chronic pain for a bit didn't work out so well. Since a few days it's back to the burning right side, numb and painful right leg and arm, along with the terrible abdominal pains, distended abdomen and lack of appetite.

Current suspicion is something like imperforate hymen [1] resulting in something like peritonitis [2], which would explain the distension of the abdomen and pains, along with the rest of the symptoms.

Even though I have been experiencing such pains for many years now, there has been very little interest from doctors. After the laparoscopy, two months ago, and the prompt dismissal by the gynaecologist of my problems being gynaecological in nature, there only really seems one plausible option for me to proceed, namely undergoing an examination by a proctologist.

To this end I have made an appointment for such an examination, scheduled for the end of next month. This will mostly focus on examining where the occasional bright red blood comes from, and whether signs of an anal fissure can be seen. If issues are found, then some kind of treatment will follow. It's unlikely that this will in any way detect the reasons for the abdominal bloating and pain, let alone fix it.


Despite the chronic pain and the way it drains me off the will to continue living, I have to keep believing that there is a way out of this situation.


Medically I can basically just wait for something to go wrong. If it is in fact peritonitis, then sepsis is a possible complication. Until then I am forced to continue with things as if nothing is wrong.

Currently this entails waiting for the results in the eviction case, which will likely see me being forced to find a new place to live along with a draining of my financial resources, seeking a new job and doing job interviews, writing a new reference book for Packt on embedded C++ development, along with stumbling ahead with my autobiography.

I so desperately want to believe that things can and will get better. That I will find a place to live where I am actually happy to be, that I'll find a job or occupation that will make me feel useful and appreciated.

That there'll be an end to this endless, merciless pain in my abdomen that makes my life into a literal living hell.


Along the way I keep meeting others who think that I will make it, who support me and want the best for me. It's tough for me to think about how I feel about life and existence in general. After more than thirteen years of doctors and psychologists treating me like trash, of suffering all types of physical, psychological and sexual abuses, along with incarnation and attempting suicide, I feel that I have tried just about anything that I can think of to make my life better, yet with me only getting punished for my efforts.

I also hate feeling like a victim.

I'm a victim of many uncaring, vile people. True. Yet there are other people out there. People who are so incredibly positive and supportive. People whose optimism I fear that I cannot live up to. Like this one person whom I met on Quora a while ago, and who has been doing his utmost to cheer me up, even going to the trouble of getting me better Japanese dictionaries than the ones I had, so that I have more fun doing translation work and generally using Japanese. To make my life that little bit brighter and more joyful.

There's also my best friend, who has been there for me during almost the entirety of those thirteen years. Despite his own problems, he always tries to be there for me, to cheer me up and make me see the brighter side of life. I'm not sure I could have made it this far without him and other essential people in my life, such as my mother.


I feel that I have to get out of this dark shadow of my medical issues and the horrors of living in German run-down apartments owned by vile landlords. That's all that is keeping me down and so unhappy. There is a way out of this. I just don't know how to reach it yet.

Just need to survive a little bit longer, I hope.


Maya


[1] https://en.wikipedia.org/wiki/Imperforate_hymen
[2] https://en.wikipedia.org/wiki/Peritonitis

Depression and the expectation of pretending life isn't so bad

Years ago, my school organised a trip to the local film theatre, where my fellow students and myself would be watching a quirky Italian film called 'La Vita è Bella' [1]. Set at the beginning of World War II in Italy, it follows a young Italian couple and their young child. As the father is Jewish, he and his son are arrested and sent to a concentration camp. His wife - despite not being Jewish - decides to join him as well instead of staying behind.

The point where my classmates and I agreed the film took it too far was when the father began to pretend to his son that they weren't in a concentration camp, but actually there to be play a complicated game. While this could have been a heart-breaking collection of scenes, the way it was handled - with an absolutely disrespectful sense of humour - it completely ruined the mood of the film.

The jarring and forced attempts at brightening the mood with off-key humour became so grating that the most joyful moment of the film was when the father got discovered while sneaking around, and executed. After that the film reverted back to a far more fitting mood, and felt right again. Afterwards, we all felt that it was a shame that they had felt it necessary to force in those 'humorous' scenes.


That film raises the question of how far one can take hiding reality from a person, even if it's done with the best of intentions. As someone who suffers from severe post-traumatic stress disorder, my general outlook on life is rather bleak. Surviving and still living through more traumas tends to do that to a person. Regardless, it is standard procedure to tell someone like me that 'life isn't so bad', and 'just cheer up'. Or the worst one of all: 'things will get better'.

While some types of depression are due to the neurotransmitter balance in the brain having gone off-centre, many of those affected will be so due to external factors. When one has become fully aware of the situation which one is in, the very act of survival may lead to one becoming depressed. As the situation drags on, and survival appears to be all that is left, one's outlook on life becomes one of indifference, fatalism and worse. As one sees others live plain, boring lives, it makes one wonder what the point of being alive even is.


I do not think that my own problem is my outlook on life, or anything really to do with myself. Most likely I'm just really unlucky, with having been born intersex and gifted, suffering sexual and psychological abuse both as a child and again as an adult. Struggling through thirteen years of trying to find medical help for my intersex condition. Dealing with worsening chronic pain.

Then losing my job and facing an eviction, so that I'm losing both a place to live and my body itself. The situation seems hopeless.


As I then look around this world, I can see that Germany itself is a complete mess, both politically and socially. I don't really care to keep living here in this country. Yet where to move? So many countries with massive problems. Nowhere to just work a fun job and have a proper, quiet home. I'm still supposed to pretend that things aren't this bad, of course.

Germany has been an intense disappointment after the hope I felt when I first moved here, without real medical help, acceptance, yet with plenty of divisive and wrongful politics, people living on each other's lip and no real interest in changing things. The Netherlands I cannot move back to after all that doctors and psychologists did to me there. I won't find medical help or acceptance there either.

Within a matter of weeks I'll hear what the outcome of the eviction case against me will be. I expect having to pay lots of money in addition to what I have already paid so far, and be forced to leave the place with a couple of months. I don't care what others tell me to believe, I have years of experience to fall back on, and they tell me that I'll always get the raw end of any deal.


My therapist still expects that we can work on some old traumas and have me feel better. I'm not even sure I can trust anyone. I want to, of course.

I have a few friends whom I trust and where I hope that one day I can work up the energy to invest more time in them. Always 'later'. Survival comes first. Meeting people online can be a positive experience, though I have scared plenty of people away as they tried to befriend me and help me. I try not to be bitter, but I cannot help myself. Not with everything that is going on.

Am I supposed to bop myself upside the head and tell myself that I'm just being a silly ol' goose? That all I had to do all this time was smile and feel cheerful and optimistic. That life is all about your attitude towards it.


I actually remember feeling like that, about a decade ago, when I still had the hope that things would somehow work out. Yet things just worked out for the worst over and over. Every reprieve I seemed to get just led to another dead-end. I cannot bring myself to smile any more. Not at life at least. There are small moments which reminds me of the good times that were. Yet they will never come back.


I don't know where I'm headed with my life. I am too tired to try and steer it any more. I'm okay if it hurtles off the road and into a ravine or whatever. I did my best. I even tried to pretend that life wasn't so bad for a while. And I almost believed it. Yet life doesn't work like that. Life is ugly and deadly. Unless you were born in a lucky way, possibly even in a rich family.  Then you really have to try to screw it up.

I'm expected to smile and lie at the jobs office this week again. Promise the world, even though I know that I am incapable of doing anything more than what I'm currently doing, and got no real interest in just another job.


I don't know what I'm doing, or where I'm going.


Life isn't beautiful.


I cannot pretend otherwise.


Maya


[1] https://en.wikipedia.org/wiki/Life_Is_Beautiful

The worst part about dying is when you still want to live

After last month's surgery I found myself struggling with thoughts regarding the futility of what I'm trying to do, with getting answers about and a resolution to my intersex condition. This along with the sense of emptiness after the last hope of getting an easy resolution got squashed. Nothing about my body is easy to explain or understand. Nothing seems to match up with standard physiology.

I spent so many hours just staring aimlessly at the ceiling while lying in bed, or looking at people around me, feeling even more distance between them and myself as ever before. The sensation was of losing myself even further. Naturally the gynaecologist saw fit to dismiss me as well when I next saw him, without so many as a referral or helpful advice.

Then, as I found ways to deal with this somewhat - along with the new chronic pain symptoms - I got an update from my lawyer for the eviction case against me. This in the form of a big pack of paper containing the summary of evidence in the case, which the court will use to decide on a ruling. First I thought it was the actual ruling already, then noticed what it was about. The request from my lawyer was to look through it and send in suggestions and corrections before the deadline in less than two weeks.

I cannot do that. I cannot open the document and read through it. I physically cannot do this. Merely holding this document had my heart pounding and me feeling like I was going to be sick. For the rest of that day I felt absolutely terrible. The past days little changed. The feeling was one of impending doom. The certainty that the game was up, and these past years of relative peace and quiet were about to come to an end, with forceful eviction and again the loss of all my belongings and money. Just like before.


Then, today I didn't feel as bad about it any more. I seem to have mostly stopped worrying. I still cannot look at the legal document, but the panicked feeling and feelings of terror have mostly subsided, to be replaced with something like acceptance.

Yet what it reminds me of is the similar sense of dread and terror the days before I was forced to leave a room which I was renting in 2010. These were the days leading up to my suicide attempt. Yet I wasn't feeling those panicked sensations when I decided to kill myself. Instead this decision was made when I calmed down. Stopped clinging onto the hope that somehow I could get out of the situation which I was in.

Stopped clinging onto the idea of continuing to live.

What is interesting is that if I ask myself right now whether I would be okay with dying right now, I could totally accept it. I don't really care either way any more. What happens will happen. I'm powerless to stop it anyway. My dreams and aspirations are useless. I can accept this now.

In some ways that's a tell-tale sign of an impending suicide: when someone goes from being depressed to suddenly seeming much happier and cheerful. That's the point where they have accepted that things won't get better, and that it is okay to let go of life. Of existing. Where one has made peace with one's inescapable circumstances. In some ways it's a really positive thing. To end life on a high note.


I have lost my body. Again. I will soon lose even more. Again. No matter what I do or try, I'll always slide back and have all my efforts nullified.

But that's okay. I don't care either way. I can accept this now.


I would like to stop fighting. I want my body to stop being a battlefield. I don't want to keep searching for a home that doesn't exist. I don't care if I'm giving up and surrendering. At least I'll be at peace.


Maya

Where to go from here

When I first started this blog, I did not moderate comments on my posts. Before long, spam and later hateful messages forced me to start moderating each posted comment to filter out such junk messages before they'd be made public.

Such hateful comments on my blog and elsewhere used to hurt me quite a bit. The focus of these stalkers and kin appeared to be to make me feel as miserable as possible, usually by feeding the fears and doubts I was harbouring. Expressing those fears openly on my blog made this quite easy, naturally.

Yet when I got another one of such comments in the moderation queue this morning after a bit of a quiet period, it was interesting to note how little it evoked in terms of feelings. This was the comment, by some anonymous poster:

"When the docs themselves didn't find any female reproduction organs in your body, it means that you're just hallucinating about being an intersexual. And whole world already swayed and believed into your story without actually see a proof of your intersexuality. So stop making up story and doing something stupid to your body, before you share an ultimate proof we can't deny that you're an actual intersex."

Even ignoring the horrendous grammar and botched last sentence, the intention of this comment was clear: to hurt and confuse, to make me question everything that I am and so on. Yet instead it merely made me shake my head at how little such pitiful people understand of the situation. Too little to even properly hurt me.


The surgery back in 2011 and the biopsy performed on the removed testicles already showed that I never was a male, with virtually no testosterone and complete male infertility (no sperm-producing cells). My phenotype is also that of a female, including the shape of my pelvis and so on. This surgery also confirmed the presence of a closed-off vagina, which was the reason why I got my official sex changed so easily.

Last month's surgery further added to this that I do not have a developed uterus or ovaries, something which was already known from MRI scans and ultrasounds. It did not examine the vaginal area and nearby, which is where I am currently still experiencing severe chronic pain. What this surgery basically told me is that like I thought quite a few years ago already is that I was essentially born with just a penis and a vagina, but little else.

I also got the results this week of the cycle monitoring, for which I had blood drawn over a month, to see how my estradiol values fluctuate. The interesting thing here is that although the values are pretty low for a female (~18 - 31 pmol/L, relative to normal minimum range of ~98 - 176 pmol/L), it was with these natural values that my body exhibited the extreme PMS symptoms and formation of linea nigra when I was still taking estradiol as part of hormone therapy. This would indicate that my body is far more sensitive to estradiol than a regular woman.

I remember quite well how at the second gender team in the Netherlands which I visited I got prescribed hormones, with the estradiol in the form of these plastic patches. The dose for this was set by a doctor from this gender team, using the normal values for a male to female transgender person. Right after I started using those patches I began to suffer from intense motion sickness, severe aura-based migraines and so on. Likely this dose was many times higher than what I had determined worked for me using oral estradiol pills and regular blood tests.


I got this last batch of info at the gynaecologist this week, and now have photos of my insides to add to my collection. Unfortunately the gynaecologist does not want to look at the issues in the vaginal area, and did not wish to refer me to anyone else, insisting that it's not a gynaecological issue.

I am now yet again without any medical assistance and despite having learned a bit more about my body, the chronic pain and other symptoms are not letting up. As I type this, the inside of my upper left leg along with the groin area is super-sensitive, even painful to the touch. First on last week Wednesday did I suddenly feel something twist and shift in my lower left abdomen, causing intense pain.

Things seem to have settled a bit more now, but as my body works its way through its usual monthly cycle, there is again the sensation of fluids gathering in the vaginal area, accompanied by sharp pains, itching and general discomfort.


Honestly, I would love for all of this to be just an illusion. Sadly, reality isn't that kind to me. I would have picked being a regular male or female over being a hermaphrodite if it means being in this much pain and discomfort all the time, with doctors trying to be rid of one as quickly as possible.

What will I do next? I don't know. The most effective approach does not appear to be to seek out medical help, but to wait for something to go catastrophically wrong with my body. That way doctors are obligated to help, since they won't do anything out of the kindness of their heart, or because it is the right thing to do. Liability insurance is expensive, after all.


Maya

Post-surgery: the never-ending nightmare and a brief respite

I was lying in my hospital bed on Friday, slowly recovering from having been fully put under for the laparoscopy procedure when the gynaecologist and a host of other doctors came drifting into the room. Even though I hadn't expected to hear much else, to hear that they had not seen anything resembling formed ovaries or a uterus in my abdomen was still a sobering message. All that they had done was remove a number of locations where tissues had become stuck together, which might have caused at least part of the pain I was experiencing.

Unfortunately they had decided to not open the perinal side to check upon the vagina, as the skin had already become quite scarred from the first surgery in that area. Still, the gynaecologist - who had performed the surgery - found it necessary to say that he had not seen a vagina with the laparoscopy, even though it would be stuck snugly below the bladder, unreachable from the top of the lower abdomen where I am now left with the three incisions. Also the remark that it looked 'like one would expect to see by a male', or something to that extent. I was still quite dazed at that point, so I hope I just misunderstood something.

The gynaecologist had mentioned previously that he hadn't expected to find anything special, same as that he didn't expect to see anything special with the currently still on-going cycle monitoring of my hormone levels during one month. Next week the last blood will be drawn for that test, with the full results supposed to be available in two weeks time, when I have the next gynaecologist appointment. Which will likely be the last appointment, with probably just a simple dismissal and a 'nothing special found'.

In how far do I trust and believe this gynaecologist? In so far as me not having fully formed ovaries and a uterus is something which I will believe, as neither MRI scans or ultrasounds have shown anything like that so far. As far as the presence of a vagina, that has been confirmed by the first surgeon who operated on me, so I'll put that down to them aborting a full examination.  To hear the gynaecologist say that they found 'no female genitals' thus seems rather poorly formulated.

I guess I will see what happens in two weeks time. I would love to be proven wrong, but so far it appears that all that I'm going through at this point is another repetition of me losing a little bit more of my humanity, without getting any kind of useful answers in return. It becomes so hard to keep a grasp on reality, especially when I experience one thing, and doctors keep insisting  that my interpretation of reality is wrong. Like this gynaecologist essentially already insisting that I cannot be experiencing a monthly cycle before even have received the full results of the blood tests. It almost feels as if a certain reality is being forced upon me.

It's been like that for the past thirteen years, basically. And doctors have constantly proven other doctors to be wrong, and the reality which I'm experiencing incredibly more correct. Yet reality is nothing next to the opinion of specialists.


The one good thing which happened to me the past days was me meeting this woman and her father at the same hospital on Thursday during the pre-surgery work. She was also there to have a laparoscopy, in order to remove a cyst from an ovary. As it turned out, we lived pretty close to each other, so her father offered me a ride to the hospital on Friday, which I gladly accepted.

After our surgeries, this woman and I shared the same room as we recovered over the next two days. None of it was fun, but by being able to share our experiences, I think it became somewhat easier for us both. Being able to care for someone else at the same time as that I was recovering was a good thing, distracting me from my own issues. This woman also had a number of friends and family members come visit, with most of the chatting done in Spanish, which I found very interesting as well.

Through these visits, and by talking a lot with this woman and her father, I felt like I could slowly become immersed in this other world. A world of people who care so much about each other, who are doing their best to get through life, even leaving their country of birth - much as what I did - and making the best of things as they get alone. It made me feel happy that I could be a part of this, even if it was just for a few short days.


Now that I'm out of the hospital, it's back to the same old grind. Yet something has changed. It's hard to describe it, really. Maybe it's because the hopes I had before the surgery got dashed, yet without the leeway provided by the ambiguity of an MRI scan. With the images that were made of the laparoscopy, there is a lot which I cannot question about what is slowly forming into nan undeniable truth.

What maybe has changed is the realisation that after first having any possibility of me having a functional male side dashed in 2011 with the biopsy of the testicles that were removed, finding them to be essentially undeveloped, now something similar has happened for the possibility of a functional female side. Though I do appear to have something generating normal levels of female hormones, and I still have some kind of vagina, I do not have and will not ever have ovaries or a uterus. I'm nothing like a male or female. I'm something... else. Something... empty.

As if with every new revelation like this, I'm becoming something more agender, more asexual. Something of which I less understand what it is, or could be.

Together with this there is the fear that if there's indeed a monthly cycle, and uterine tissue that responds to it, then I essentially have what one could call the worst kind of endometriosis one could imagine. Something that just fills up the abdomen without nothing to guide it. Together with a closed-off vagina, that's pretty much a recipe for disaster. At this point it's just an unsubstantiated fear, however.

I wish I had a doctor who understood these fears, doing their best to investigate and alleviate such fears to get an outcome that made me somehow at peace with things. Not this constant battling and doubting of those who are supposed to be providing me with this help. I don't know what to believe, or who to trust any more.

Not just doctors, but people in general. The past days the contrast between me and this woman with whom I shared a few days of our lives couldn't have been more stark. I felt so weak and fearful, with her taking the initiative on a number of occasions, to ask something of the nurses and the like. Things which would have made me freeze up in terror just thinking of doing something wrong or improper.

I guess I felt somewhat jealous, as well. The idea of having a regular female body and just a common issue like a cyst. Not a host of questions, worries and maybe another batch of big surgeries. If I'm lucky.


Maybe I'm just too tired of trying to make sense of things any more at this point. It's gone far beyond merely trying to live my life, finding a job and a place to live. This goes to the very fundamentals of who and what I am. How I fit in with the whole. Once I thought I was just a male, which delusion got destroyed, to be replaced with the thought that I might be more female. Even though I will always look more like a woman, I guess I have to find a way to deal with this emptiness I feel inside now.

I need to figure this out. I need to make sense of this. I need help with this. Not people trying to force things on me. People who wish to help me feel better. Regain some of what I have lost.


The past days I have felt myself struggling with my emotions more and more strongly. Since returning to this apartment that I'm currently inhabiting and what somewhat feels like my old life, it's become even harder. I cannot seem to focus on anything but this emotional and psychological struggle now. It may destroy me if I fail to figure this out. What happens at the appointment in two weeks may make things much better, or much worse.

I don't think that anyone who wishes to help me can do so. I don't believe that anyone who can help me wishes to do so.

I cannot tell what may happen next. I will just have to live through this hell one day at a time. Trying to keep my sanity intact. Trying to stay myself. Whatever the heck that may be.


Is there hope for me? I'm doing my best, but I'm falling apart. Worse than before. Unable to define myself, unable to provide answers to questions, I remain stuck dealing with the same issues. Issues which I cannot resolve on my own. Issues which may require that my body first breaks down further before I get the required help and answers. By which time it may already be too late for the easy and best solutions.


I don't know. I don't know anything. I cannot deal with this. I don't know how I can keep living like this. I don't know whether I'm truly alive at this point. Do I even exist? Am I crazy? Maybe that's the only reasonable answer.


Maya

Living one's life at the mercy of others

On Thursday this week I had my 12th MRI scan. This one was a repetition of the 11th scan, in order to get a better look at a presumed site of inflammation in my spinal cord. For this contrast dye was required, which was a second time for me. After an hour-long wait in the waiting room of the clinic, I was allowed to go through the scanning routine.

Take of all clothing items, boots and the like which contain metal, change into a shift and walk to the MRI scanner. Lie down and get 'comfortable'. Get the needle for the contrast dye jammed into the large vein in my right arm. Nod as the use of the emergency signalling bulb thingy is explained. Get the sound-dampening headphones put on. Sensor-enhancing cage is placed around the head. Personnel leaves the room. One slides into the scanner and spends the next twenty or thirty minutes kind of dazing as the noisy MRI scanner does its thing.

With the contrast dye there's the warm sensation in one's abdomen and sometimes chest. Other than that it's all the same as every other time. Once the scan is done, one is slid out of the scanner, the sensor cage is removed from around one's head, and one is further extracted from the scanner bed. One walks back to the dressing cubicle, gets dressed again and waits in the waiting room until called by the radiologist.


The good news? With the enhanced resolution courtesy of the contrast dye there was no sign of any inflammation in my spinal cord. This means that next month I should get the all-clear from the neurologist. After three MRI scans, one lumbar puncture, a nerve conductivity and a visual stimulation test, any of the symptoms of pain and numbness which I'm experiencing are most likely not due to anything neurological.

This then shifts the weight of the medical investigation to my gynaecologist. During next week's appointment I hope to discuss the laparoscopy which he proposed, and hopefully plan it for this or next month. At this point the cause of my chronic pain and discomfort has to lie in my abdomen. The main question is what is happening.

That fluid is being produced every month seems certain. That I have a regular monthly cycle is clear to me, and the cycle monitoring using my blood hormone levels should provide further data on this. The questions then seem to revolve around what tissue is present in my abdomen that is responding to these varying hormone levels, where this fluid is being produced and where it goes to afterwards.

One of the possibilities the gynaecologist mentioned was a fistula (rectovaginal fistula [1] ), which basically means a hole formed between the vagina and rectum. This would allow fluids to pass from the vagina to the rectum, and vice versa. That there is regular damage occurring to the inside of the rectum since I was a teenager has been established at this point. This might be an underlying cause.

If what underlies the symptoms of pain and distension in my abdomen - as well as the numbness and pain in my arms and legs - is the formation of such a fistula, caused by the trauma from fluid gathering in the (closed-off) vagina, then this should be easy enough to spot with the laparoscopy. The solution then would be to create an exit for the fluids, meaning creating an exit for the vagina by attaching it to the perineum, creating a regular vagina, even with fanciful labia and everything.

That way the fistula could heal up, I would just have to mess around with tampons and such wonderful things, but I would be free of pain and numbness. Beyond what's deemed acceptable for a regular woman, naturally.


I just hope that this laparoscopy thing works out. That it gets good results and any required follow-up surgery will be readily available. That it'll hopefully be the end of over thirteen years of looking for answers and medical help. That after the surgeries all I have to deal with is healing up and start processing the pain and traumas of about two decades worth of experiences related to this body and society's response to it.

I'm looking forward to telling my medical coach that I won't need any more 'help' from those 'intersex specialists'. Yet the anger and frustration I feel towards intersex 'specialists' and intersex organisations is something that will take a lot of time and energy to process and give a place. The realisation that all of those were utterly useless and a complete waste of time, that all I needed to do was to wait for my body to start suffering symptoms so that I could go to proper doctors and specialists who actually do have a clue.

My body is no different from that of a regular woman. They too suffer development issues of the vagina, fistulas, fissures and so much more. I should never have needed 'special' doctors. That's the take-away message for me here. I'm sick of what ultimately comes down to discrimination.


What stresses me even more than all of the above is the realisation that in addition to all of that, I also have to somehow manage getting a new job, find a new home to move into, deal with the job office in the meantime, and wait to hear what the court will decide in the matter of the eviction case against me.

Honestly, I don't really have the energy to care about any of it at this point. The medical stuff and constant pain management is more than enough already. I regularly communicate with headhunters about potential new jobs, of course, but it is so hard to commit myself to anything when I don't even know how my health will hold up over the coming months, or what will come out of any surgeries.

What'll be the right choice to make? When will I be available for a new job? I don't know. At this point I cannot function any more without constant painkillers. The hoped-for surgery should resolve this, but at this point that's nothing but wishful thinking, more born out of desperation than out of cold reality.

Not to mention the possibility of surgical complications. I just cannot tell. Yet it's not easy to communicate this to others, even if it are those others who will decide over my life the coming months.

It feels so incredibly lonely and terrifying.


Maya


[1] https://en.wikipedia.org/wiki/Rectovaginal_fistula

Preparing for my next surgery

Earlier this week I had what might have been the most anticipated event for me this month. I didn't expect that much to happen at the neurologist, and other than having a redo of the last MRI scan of my spinal column (this time with contrast dye), it seems that this will be the end of that course of investigation. No, the biggest wild card, medically speaking, was my appointment with the gynaecologist.

It's been about two years since I last talked with this gynaecologist, and a lot of things have happened since that time. Things such as the big physiological changes my body underwent in those years - particularly my ovaries finally kicking into gear - along with my current set of complaints (distended abdomen, regular sensations of fluid gathering and things rupturing in the vaginal area. This probably helped to get things right down to business.

An ultrasound showed that at least I do not appear to have ovaries in the expected location for a plain old woman. To gather more data on my cycle I'll have blood taken for a couple of weeks in order to see how the hormone levels fluctuate during that time. Then, at the end, the gynaecologist suggested a more extensive procedure. Namely a laparoscopy of the abdomen.

This would involve the gynaecologist making small incisions in my abdomen, to allow for a camera and tools to enter the abdomen. The goal of this would be to explore the organs and tissues present and take biopsies of relevant tissues. Ideally this would allow the gynaecologist to see exactly what is going inside my abdomen, and settle the question of which organs I have/do not have once and for all.

The coming weeks it should become clear when this procedure will take place. I fervently hope that this will definitively answer the question of whether I have a vagina which is usable for re-attachment to the perineum, while also putting to rest any fears I have about cancer and other potential issues which might be underlying my current health issues.


The procedure itself would be easy. I'd be put under completely, so after an hour or so I'd be waking up again to learn of the results and be able to leave the hospital the same day. With some luck those results would allow me to finally find that reconstructive surgeon for the final surgery. Hard to get better pre-surgery information than the video and biopsy results from a laparoscopy.

Who knows, maybe this will be the year when this 13-year old medical drama that is my current life will finally come to a (happy) end?


Maya

On visiting the pool as a hermaphrodite

It's sometimes frightening to note just how rapidly time can slip by sometimes. Such as yesterday when I went to a nearby swimming pool with a couple of friends, with my last recollection of visiting such a place being at least 6-7 years in the past.

What prompted me to go along to the pool with the others was an urging by my therapist to 'maybe do some sports'. I always maintained over the past years that all the cycling I do around the city is enough to keep me fit. Suffice it to say that yesterday's experience (and today's sore muscles) have proven me completely wrong on that account. Seldom have I felt more out of shape and somewhat humbled.

The positive side of yesterday's pool visit was cycling back afterwards feeling all fuzzy, warm and happy. As someone who has loved swimming already as a child, it was so good to be back in the water. Even if a large part of it is the dodging of other people in the pool as one tries to gets in one's laps, it's still a positive experience. As a bonus, the water was far less chlorinated than I'm used to from Dutch pools.

Not smelling for a day like one got caught in an accident involving a truck carrying chlorine is pretty nice, indeed.


After buying an entry ticket and figuring out how to use the entry gates, I met my next challenge: dressing cubicles. Since the whole place was under construction, still, it turned out that the number of private cubicles was rather limited. I wasn't going to enter any of the communal dressing rooms. I was there to swim, after all. Not worry about what other women might think of my extended set of accessories.

What was somewhat funny is that earlier yesterday in the local hackerspace's IRC chatroom another person expressed interest in tagging along to the pool as well, but expressed concern about wearing a bikini because she is a pre-op transgender person, and 'excess bits' would show up. I'm not sure whether I'm just special, but when I'm wearing a swimsuit or bikini you wouldn't know that I'm not a Human Female Model Mark 1. I almost mentioned this fact in the chat, but figured that it's still okay if people assume me to be just a regular female.

I guess I am glad for this fact, however. Being able to just go swimming without weird looks is nice. Probably the only reason why people might gawk at me is for apparently looking like an Attractive Human Female.


One thing which I found interesting at this pool compared to all the Dutch pools I have frequented, is that here they have a section for men and one for women which has the toilets and showers. With Dutch pools there's usually an open shower section in the entrance to the pool itself, meaning that you get a quick rinse before entering the pool and after leaving it.

At the pool I visited yesterday, this meant that as a result it was common practice to strip down fully after swimming, much as one would do when at home. Though they also have two private showers, most women I saw there seemed to have no issues with slipping out of their swimsuit or bikini. To be honest, I kind of like this. There's nothing to be ashamed of, after all.

Except for me, maybe. While I had no qualms about stripping down the top part of my swimsuit, I figured I'd not slip out of it fully. Even if I already had had the reconstructive surgery for the vagina, the presence of bonus parts would at the very least lead to uncomfortable looks and, worst case, upset people. No use in chancing it.


In some ways a pool visit is a rather intimate experience, as it requires one to expose oneself and one's body in ways which we're not generally used to in daily life, and all of that in public. Suddenly everybody can see what you have kept hidden underneath layers of clothing. Be it scars, an old tattoo, that tummy that just won't shrink, or the fact that you're not technically male or female.

For that reason I have avoided saunas like the plague, for one. Even though I am not ashamed of being a hermaphrodite (hermaphroditic intersex person), it's especially at places such as pools and saunas where one can no longer just coast along on the assumption by others that one is simply female. I'm not sure what the solution there is. If there even is one.


I guess yesterday's experience once more made me understand other hermaphrodites who choose to just have one side chopped off and removed from their body a little bit more. Though I do not feel nearly as uncomfortable with my body today as I used to only a few years ago, it is hard to shake off this feeling of loneliness that comes with being different enough to fall outside of society.

Thinking back to how I could just have gone along with all those attempts by dozens of doctors and psychologists to convince me that I was transgender. If I had pulled it off, I might now have had genital surgery, removing the male bits (and likely any female bits they found...) and be a normal human female. Kinda. Sorta. It would feel horribly fake to me. I would not be 'me'.

Yet the mental struggle to keep rejecting the seductive lure of 'just getting all the strife over with' remains. At least so long as there is not truly a place for us hermaphrodites. Being ourselves is a tough job, every day again. To be something which you know exists, but others do not, or dismiss it as little more than a myth.

This must be exactly what a unicorn would feel like, I guess.


Maya

Hanging around while feeling unneeded

It is normal for any human being to want to feel wanted, needed and possibly even loved. To remove or blunt that desire means to strip a person of their empathy, of any shred of love for themselves and ultimately the will to live.


For the past decades I have struggled with being 'different' in a variety of ways. First there was me being gifted, and a purely visual-spatial thinker. This was what first got me isolated during primary school and severely bullied and beaten up on a number of occasions. My only friends during my school period were the other outcasts and misfits.

Then there was the intersex thing. To discover that I never was a male. That my body wasn't at all what I had been told what it was supposed to be. To society I merely changed from a male into a female role, but underneath my skin things are infinitely more complex. Organs, or at least functional tissues, have kicked into action and forced my body to become definitely more feminine along with repairing old scars and the like. Yet I will never be a woman. Once a hermaphrodite, always a hermaphrodite.


Thirteen years. That's the current count for how long I have been trying to figure out what this body of mine is about, and more recently why I'm suffering chronic pain, abdominal distension, etc. Last month I finally figured out that what has been causing a lot of pain and discomfort since I was 11 years old are fissures, at least in the rectum judging by the blood. Possibly in the vagina as well. What causes those constant fissures, however?

The most reasonable theory which I have so far discussed with my GP is that there's a build-up of fluids inside the vagina and/or around that area, which causes the rectal wall to bulge inwards, at which point regular toilet visits would shred this wall, causing constant fissures. Those fissures and discomfort experienced each month also only occur on the side between the rectal and vaginal walls.

As for the actual cause behind all of this, and possible outcomes, there are many possibilities. Everything from rectal wall spasms to ovarian cancer and lots of secondary causes. The coming months I hope to learn more.


Yet it's been thirteen years. Thirteen years during which everything rapidly became clear to me what had to be done and examined. It still feels as if doctors are only just catching up on the need to actually examine a hermaphroditic body for possible complications due to the irregular formation of certain tissues and organs on account of having two distinct sets of DNA try to steer the same mechanisms.

It feels as if the only reason why I'm being taken more seriously now is because all of those issues which I was worried about for over a decade already are now finally beginning to appear. Finally something which they can understand and act upon, maybe. It's too easy to feel bitter at this.

Apparently certain types of cancer are more prevalent among hermaphrodites, specifically those of the reproductive organs. Sepsis is also much more common, for when fluids get trapped and become infected. I have read up on this and tried to convince doctors of the urgency to determine which organs I have in my abdomen for this reason. Instead all I got was one side telling me that I had a normal male body, and the other side that I have a hermaphroditic body. Attempts to focus on the latter did not pay off.

What might save or still end up killing me is time. Simply wait long enough until things start going wrong and you can present concrete symptoms to doctors. From numbness and pain in one's limbs to abdominal distension (from 70 to 82 cm), the aforementioned fissures accompanied with bright red blood and the sensation of a lot of fluid being trapped underneath the skin in the vaginal area. They have their work cut out for them.

Yet nobody still cares about me being intersex.


I guess that the gifted thing keeps haunting me. I was always the one to question everything. The child who preferred to hang out with adults instead of with those their own age. The one who couldn't stop learning, questioning and dreaming. I cannot just 'be'. For me 'Hell' is a life lived without meaning.

You know what lies at the end of every single 'why'?' question? Nothing. Because the universe just is. There's no reason for its existence, just like there is no reason for our own existence. We exist because along a line of ancestors there were always those who had to mate and produce offspring. Why? Because.

Yet the universe is not without meaning. Through its existence it produces stars, galaxies and much, much more. Life is the same. A life lived well produces its own meaning. I guess this is the primary reason why I feel as if I'm being suffocated when I consider a reduction of being able to live. To do a menial, meaningless job working on something which in the end nobody really cares about, for example.

In some ways I am a thrill-seeker, I guess. Just not by risking my own life and health, but by seeking new intellectual challenges. By challenging certainties in science and technology. To me that is what gives life meaning. Any other existence is too terrifying for me to consider.

This, too, makes me a poor fit for society.


What more is there that makes me truly unfit to function in society and prevents me from feeling like I belong or am needed anywhere? Nobody needs my traumatic experiences recounted to them, I'm sure. What happened to me when I was five years old is my own problem. It's my responsibility to make sure it doesn't interfere with me pretending to be a Normal Human.

Many things which are 'different' about me are mostly just quaint, though, I guess. From being ambidextrous, to being a super-taster and so on. They just make me 'slightly odd', I reckon.


I guess that in the end the question with which I am left  is a simple: where to from here?


Without a job or anything else to keep me tied down to this country of Germany, I am free to go and work and live anywhere in the world. Assuming someone needs me. Something exciting. Something hard and challenging. Something that can keep my interest.

The simple trick is to find the right employer.

Or just go into academics and forget about the 'real' world :)


Maya