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

Continuing towards my 20th MRI scan

This morning I made an appointment for what will be my 11th MRI scan so far. During yesterday's neurologist appointment the neurologist confirmed that I am indeed still experiencing the numbness and pain in my right leg. With the tests on the cerebrospinal fluid (CSF) - drawn from my body during a lumbar puncture a while ago - showing up all clear, the neurologist wanted to check for the next few items to investigate.

Specifically myelitis (infection/inflammation of the white or grey matter of the spinal cord) [1], and a spinal disc herniation [2]. Ergo another MRI is needed, this time of the lower part of the body, since the first scan just covered the part up to and including part of the chest area.


With the upper part of my body seemingly fine, even with the many white spots (lesions) seen in my brain, the focus now shifts to the rest of my spinal column and the nerves inside it. Things will be interested if neither of these two presumptions turn out to be true and there's neither a herniation, nor any indications of inflammation. What will the next step be, if any?

Based on the observation that the numbness in my right leg seems to be linked to my monthly cycle (discomfort and pain starting some time into the first week, worsening until tapering off over the next two weeks), it would be reasonable to presume that something is swelling up or expanding in mass so as to press on the sciatic nerve that innervates the leg.

Along with the pain, numbness and discomfort in my right leg and hip, I also experience pains and discomfort in the lower abdomen and genital area which would suggest that something is inflamed or at the very least overly sensitive and irritated. This to the point that toilet visits around this period can have me literally in tears afterwards from the pain due to the pressure on what feels like a severely painful vagina.


On Monday I contacted the endocrinologist who I last saw in 2016 and who was also responsible for getting me a bit of medical help and some answers about my body. She had mentioned something about a gynaecologist who might be able to help someone in my situation, which seems like the kind of person I could use right now. So far I haven't received a response yet, however.

It will be interesting to see how this big puzzle that is my body and its issues continues. Will it be the detour via the neurologist which ultimately will lead to the discovery of what is really going on inside my abdomen? At this point I at least really appreciate how this neurologist continues with this investigation until all reasonable causes have been looked at and dismissed. The first MRI scan surprised me, because I had expected to be dismissed for a symptom as vague as 'numbness in my leg'.

The lumbar puncture was a surprise, too, and I honestly had expected yesterday's appointment to be the last one. Just an 'everything looked fine in the test, nothing else we can do now.'. Instead the neurologist surprised me again by looking briefly whether a scan of the lower part of my spine had been made already and ordering a new MRI scan when he didn't.


My feelings about this 11th MRI scan and second scan for neurological purposes are a bit mixed. I don't really expect them to see anything, yet if they do it could be something bad, possibly requiring surgery. On the other hand, if they find the cause of this numbness and such, that would be nice.

There is also the consideration of just how far down the torso the scan will reach. If they'll go just for the spinal column, then the coccyx is roughly at the level of the bladder, which would miss a big section of the lower abdomen. If they do however scan the lower abdomen or a large section of it, the results could be even more interesting.

It's been a few years now since the last MRI scans were made of my abdomen. Before my body starts its true puberty back in 2015. With my body presumably having matured significantly inside as well, it might be that one can see distinct changes on an MRI scan, including the presence of a proper lining inside the vagina, which was previously mostly absent.

There I really hope on one hand that they cover that area, as even with imperfect MRI settings for soft tissues it could still show a lot. On the other hand, I would be a tad nervous after the scan to face the radiologist if they went low enough and I have to explain my intersex condition. Would be worth it, though.


With general medical help for my intersex condition and its complications still being practically absent, this specific investigation into just this numb leg might be my best bet to get some answers. I truly hope that this neurologist will continue to surprise me.

Some surprises are really quite pleasant :)


Maya


[1] https://en.wikipedia.org/wiki/Myelitis
[2] https://en.wikipedia.org/wiki/Spinal_disc_herniation

To experience puberty twice, once as a boy, once as a girl

Around the age of eleven was the first time that I entered puberty and began to notice changes to my body. As I was expecting male secondary characteristics, I only really paid attention to those. The regular abdominal pains I dismissed, along with the period of breast growth. Instead I noticed the (slight and not very impressive) facial hair, the (slightly) breaking of my voice, and more body hair. Looking back it wasn't a very impressive male puberty, with in hindsight also the development of secondary female characteristics, including breast growth, the development of female hips and the start of a monthly cycle.

This all left my body in a slightly confused state, which didn't really resolve itself until a few years back. I guess having the undeveloped testicles removed helped to change the hormone balance of my body from one that was neither male nor female to one that was distinctly female, with normal oestrogen levels produced by my ovaries.

Looking back, 2014 or 2015 was roughly the start of my second puberty. This would see me develop the aforementioned female hormone balance, restart the growth of my breasts and generally change my general appearance more to that of an adult female.


At this point I feel like I'm about 14, maybe 15 years old. Body-wise and also emotionally. With everything that has happened so far a lie and hopefully just a bad dream, it's as if this is me finally doing part of my life correctly. Of course, normally I'd experience this puberty as a girl while still at home with my family. Going to school and hanging out with my friends there. Learning about how things work that way.

I roughly know what it means to have a female body, but it's still weird to see all of these changes happening to my body. Weird, but exciting. It all feels right, though. This is the way that things were meant to be.


Not all that happened before, however. Not this other... puberty that I remember, or this person that I was supposed to be. This... boy. That never happened. It cannot be. Not when I look at myself in the mirror and see these changes. I cannot accept that as part of reality.

I'm 14. Maybe 15. I'm just a normal girl growing up. I cannot have lived as a boy. It must be a lie. Just look at this body of mine.

I cannot integrate these two realities. One of them must be false.


Yes, my body is also different, but it is still that of a young woman. That's the simple truth which I cannot deny. That I also have... male genitals doesn't take away from that fact. Maybe that's where what I referred to as 'being an involuntary female to male transsexual' comes into play. I never wanted to live in a male gender role. That just got forced upon me.

Much like with countless intersex children who suffer the horrors of intersex genital mutilation (IGM), I, too, was forced into a gender role not of my own choosing. Something like that cannot go right. I am still fortunate that I did not have my genitals chopped up by these butchers who like to call themselves doctors, as they do to so many others less fortunate every day again and again.

At least I get to find my own identity in an undamaged body. It will just take time.


Maya

Relativism and four lights

In the Star Trek: The Next Generation episode 'Chain of Command', captain Picard finds himself captured by the enemy [1], who attempt to obtain crucial information from him through torture. As part of this torture, Picard is made fully dependent on the person who performs the torture. All Picard has to do is to give into this person's demands, answer his questions and the pain will stop. All he has to do is admit that there are in fact five lights.

The lights in question are bright lights mounted behind the desk of the torturer. There are in fact four of them. Yet towards Picard it is constantly stated that there are in fact five lights, and that he just isn't seeing things right. After being rescued, Picard admits that, near the end, he had begun to believe that he was actually seeing five lights.


When I first watched that episode, it was still years before I would embark on my quest to figure out what my body is, and it was just an interesting story to me, with a deep psychological insight in the effects of torture and mental manipulation. As I now recall the episode's story, it has taken on a far more gruesome note to me, however.

For me there weren't four, nay, five lights. For me there was the knowledge and realisation that what I was seeing was a body that was intersex, yet when put in the room with my torturers (doctors, psychologists, etc.), they'd persist in their notion that I was seeing things wrong. My body was not intersex, or even feminine, but just that of a male.

Much like with what Picard went through in this episode there were many times when I got offered what seemed like a way out. I just had to admit that my torturer is right and everything will be fine. Just admit that I'm not intersex. That I don't look like a woman. That I'm a transgender male. They'll make sure everything will be fine if I just admit to the truth.

Picard was locked in this room and couldn't just walk away from the torturing. I was, and still am, locked inside my body and cannot walk away from the torturing. Not unless I destroy this body. The four lights are always there. I can see them. I know that there are four. Not five.


I only have to glance in the mirror or catch my reflection to see my female curves. I know that my body produces its own female hormones without assistance, from the ovaries with which I was born. I know that my body is not that of a male. That'd be as ridiculous as to say that four lights are in fact five lights. Yet for twelve years and counting that's what doctors, psychologists and kin have been trying to convince me of.

Fortunately since the end of 2015 there has been a shift in this behaviour, with me finding more and more doctors and psychologists who agree that there are four lights, not five. Yet most still seem to believe that there are five lights and that convincing me of this very fact is paramount to my emotional well-being. Even as severe post-traumatic stress disorder and related traumas have been diagnosed by me and I undergo intensive psychotherapy in order to cope with this trauma.

I do not feel that I have been freed yet from this torture. Not while I'm still surrounded by people who insist that my perception of reality is false. That four lights are in fact five lights. That I am dreaming this body of mine, and so on. The torture sessions continue. Relentlessly.


I guess the most comforting thought throughout this is the one which played again through my head yesterday after I headed back outside after work. Whilst descending the stairs, I pictured myself as just a collection of electric impulses zipping through the neurons which make up this brain of mine. A brain suspended in spinal fluid, inside a bony cavity, itself suspended on a spinal column connected to limbs which move this entire contraption around.

Sensors are how we - as a neural network - perceive the world around us. Yet we also make up so many stories around it, adding our own interpretations and flourishes. How much of that is truly real? Aren't we in the end just these weird, biological constructions which lumber around on this planet's surface? Isn't that what humanity in the end is, with everything else just dreamed up inside these bony prisons?


Maya


[1] http://memory-alpha.wikia.com/wiki/Chain_of_Command,_Part_II

I want to stop being the eternal victim

For a while now I have been trying to recover the memories associated with whatever happened to me as a child when I was about five years old. It was an event which my mother and others in my environment saw as me changing practically overnight from an open, energetic child who loved to hug and befriend people into a withdrawn child, terrified of others and refusing to be touched or hugged, even by my own mother. A child which would later display bizarre sexual behaviour reminiscent of role play one would see in sexual abuse.

As I come closer to the truth I'm ever more reluctant to uncover what happened. At times I can almost feel as though I can reach those memories. Amidst the memories of losing that blue balloon, playing on the farm, of getting that new puppy, family visits, birthday parties and sleep-overs there is... something else. It's so strange that many of the memories of when I was around five or six are so clear, yet when I try to follow my development and my attitude towards others around that time it's as though there's this wall of translucent ice I can't get a hold on.

For each memory of me as this child, I have to change it from the third-person perspective into a first-person perspective. Recall my emotions and feelings at that time, then follow that thread to earlier memories. Then do the same with those memories. Until I hit that same wall again. There's something there of people being horrible to me. Of things happening which I did not like, but which I was powerless to fight against. Because I was just a child.


It makes me wonder whether part of the reason why I stayed a child - emotionally - for so long was also as a form of defence against the world. So long as I did not grow up, I wouldn't have to face reality, or something. I don't know. I'm an adult now, so I don't have that excuse any more. Just these horrible memories and sensations of being victimised.

Memories of which I wish they were just limited to early childhood. Not that I needed them to be compounded by the horrible acts committed against me during primary school when I got severely bullied and made to feel like absolute trash. And again during the first few years of highschool. Just a freak and trash. That's all I really was.


Losing my way in life after finishing highschool and getting rejected by my father after my parents divorced. The hell of trying to find some kind of acceptance for me being gifted and lost in life. Then the far worse hell of finding out about being intersex and suffering the horrific physical and psychological abuse by doctors and psychologists as they abused, humiliated and brainwashed me. Because I'm a freak. Because I'm trash. Because I'm crazy and refuse to accept that I'm male and transgender. Or just crazy. And delusional. They all knew so well what was wrong with me.

Getting raped by a 'friend' because I thought I could trust this person, but that was not what he wanted from me. Me making one poor decision about who I could and couldn't trust after another. Getting stalked by those who wished to bully me into me trying to commit suicide again. And succeed this time.

Having all of my possessions stolen and becoming homeless. Living on the scraps others would toss at me, out of pity. The continuing abuse by doctors and psychologists. Then getting deceived and abused by landlords as I try to find a place to live. Today again getting an update via my lawyer making it clear that my current landlady would gladly ignore the signed statement by my psychotherapist indicating my fragile psychological state and risk of suicide. Supposedly I'm just stalling to keep off the eviction.

They're okay with me committing suicide. It'd probably make them overjoyed as it'd speed things up significantly. Too bad for them so far the court has decided to wait until November this year before the building inspector will take a look at the issues in my apartment, meaning that nothing is likely to happen until then. It's a small comfort.


Part of me wonders whether the abuse which I likely suffered as a young child is something that continued afterwards up till today, with no end in sight. Especially dealing with this eviction case and the fear that there's nothing standing between this horrible landlady and me losing everything again makes me consider that possibly the only way that I can make a fist against being the eternal victim is to commit suicide.

When I'm dead, I'm free. I'd no longer be a victim. Nothing would matter any more.

Of course, that's the easy way out, or so people keep telling me. The real way to make a fist and to get revenge on all of those who have wronged me is to live a great life. I'd love that. I really do. I just wonder how realistic it is.


This past weekend I have spent in pain again, as whatever is happening inside my abdomen at the peak of each monthly cycle is causing incredible pain and discomfort. Today as well. It has me regularly bend over from the pain in my lower abdomen, which along with the sharp pain in the vaginal area is at times too much to bear. Toilet visit have become the usual nightmare.

Next month is the follow-up appointment with the neurologist. He'll have looked at the scans of my brain and spinal column and likely conclude that there are no signs of inflammation or other issues would would offer an explanation for the numbness and pain in the right side of my body. The next possible diagnosis of endometriosis is then likely the correct one, also since now after a couple of months of using the contraceptive pill again I can conclude that with it I seem to barely experience this numbness and other symptoms. Just the horrible pain and discomfort in my abdomen.


To have that examined, however, I absolutely need to see this intersex specialist. Even though my medical coach has been calling after this for months now, progress there is slow. Maybe I'll have an appointment this year. Maybe not. I have been at this for over twelve years and counting. It may very well take twenty years in total to get some kind of proper diagnosis of my intersex condition, and possibly a treatment for, or solution to these horrible monthly pains.


I'm just tired of feeling like the eternal victim. It's as though I am a horrible person who deserves all of this. Maybe this already is Hell. It might very well be. I keep trying, yet with every setback I have to really wonder whether it's worth it to keep fighting. If I will always keep having horrible stuff happen to me, it has to be a problem with me, no? In that case there really is no point in trying to continue to live if I cannot seem to fix whatever it is that I'm apparently doing wrong.

...yet that'd also make me into a victim again. I don't want to die or commit suicide, or even think about such horrible things. I want to tell all of those horrible people that they can go f*ck themselves, catch spontaneously on fire and die horrible, agonising deaths. Because a bit of anger is good and proper here, I think. They want to screw me over along my future? Not like I am going to care in the slightest about their well-being, then. F*ck that.


It's the classical struggle for any victims of severe, long-term trauma, I think. Part of one's psyche wants to blame oneself. The other part wants to lash out at those monsters who caused the trauma. There's the blame, anger, self-doubt, suicidal thoughts, crying, depression, self-harm and rage at the world in general. Just the process of trying to make sense of 'why'. Why me. Why did they have to do that. Why did no one stop them. Why didn't I say no. Why didn't I just leave. Why. Why. Why.

I guess I am beginning to slowly accept that I am most definitely not doing okay, and that me accepting help from not just one but two psychotherapists for simultaneous therapy is an absolute necessity. Me handling both the psychological and medical problems in addition to my daily struggles was more than any person could possibly take. Off-loading most of the first two to others likely will save my life.


There was a time when I'd smirk at the thought of psychotherapy. I always figured that I didn't need to talk about things. That such things were useless. I figured that I'd be strong enough to handle any emotional issues on my own. Maybe some day I'll write that long-promised autobiography so that others can read about how incredibly weak, and yet how incredibly strong I was throughout this ordeal. Weak and strong in so many different ways. Ways one doesn't truly realise until long afterwards.

I'd like that.


Maya

How feminism made me loathe Wonder Woman

I never really was into super heroes as a child. Mostly because most of them were so unrealistic that I could not imagine how they would appeal to an audience. Regardless, over the years I have caught up on this craze through watching various films and cartoons featuring these characters.

Of all of these super heroes, I like the anti-heroes the most, to be honest. Especially characters such as Dead Pool and Wolverine. They feel like real people, with a real background and personality with whom you can relate. The X-Men series in general appealed to me because it features characters who were just thrown into that role through genetic fate, causing lots of struggles as they came to terms with their condition. Many of these characters are quite relatable as a reason.

I have seen a few Super Man films as well, but as with characters such as Captain America and kin, it never felt real. With an unrealistic premise, ridiculous forced character development and a cardboard cut-out for a personality, such films never connected with me. I definitely liked the Bat Man films more there, as Bruce's character was relatable in its imperfections.


One of the few characters whom I had not seen in a cartoon or film before in any significant fashion so far is Wonder Woman. She just seemed like yet another one of those 'me too' ridiculous over the top American super heroes with truly one of the most ridiculous outfits (easily beating some of the more extreme Cat Woman outfits). Fighting in such an outfit? I'd have trouble merely catching a bus wearing it.

So then there was this Wonder Woman film this year, and people got all excited about it, because it was supposed to be really good. And presumably it was. Yet I doubt that I'll try seeing it, because I can't get this grimy taste of smug, third-wave feminism out of my mouth whenever I think of Wonder Woman now.

What mostly repulses me about Wonder Woman in general now is that she has been made into this feminist symbol which will inspire young boys to always be nice to girls and women, and young girls to... grow up to wear costumes which show off lots of cleavage and
come to prefer hot pants. Or something. Or to not take cr*p from anyone while wearing such a ridiculous costume. I guess.


I have always been quite frank about my dislike for feminism, just like my mother. This mostly due to the inherent discrimination in third-wave feminism. My mother saw it all take shape over the past decades while growing up as a young woman. My generation now has to live with its consequences.

As some may have gathered by now, I wasn't raised in a traditional female role. Courtesy of having been mistaken for a boy due to my intersex condition, I initially got brainwashed into the stereotypical (for the Netherlands) male role. Thanks to having been raised by my parents in a gender-neutral fashion, I was able to transition fairly easily into a female role instead after I discovered that my body is primarily female (just with male genitals as bonus).


What irks me the most about feminism as a result of my experiences so far is just how self-centred and self-serving it is. Albeit supposedly feminism is supposed to be about 'equality', in reality it is anything but. Although I'm also a woman, I'm in the first place a human being. Secondly I'm a hermaphrodite. And I do not feel that I am included in feminism.

Feminism is about enforcing the gender binary. About segregating people into 'men' and 'women'. About assigning stereotypes and allocating victimisation quotas. About telling young girls that they should be 'proper women' and being different from 'those men'.

Feminists do not give a fig about us intersex 'women', or the troubles (and genital mutilations) we suffer. Few Western feminists even care about the troubles suffered by women in non-Western countries. Instead we just get Western feminists cheering over a fictional character in a fictional universe somehow going to pull 'those men' into line and somehow inspiring 'girls' to become whatever. Not like a character such as Ripley in the film Alien from the 1980s being a far more realistic role model. I thought she was pretty rad, at least.

But really, if it's about equality, then it should not matter which genitals, gender, sexual preference or such a role model has. If it does, one merely discriminates. All that should matter is the person themselves. How they treat others, expect to be treated by others and their goals and path in life. An idol has to be stripped of such mundane attributes which ultimately do not define them as a person. Things like genitals.

I could have watched the Wonder Woman film the way I watched the Super Man films: as a way to stay updated on popular Western culture, and maybe enjoy a film, similarly to how I watched Dr. Strange recently and found it to be an interesting film. Yet it has become impossible for me to watch this new film now. It has become too tainted due to these connections with feminism, ruining any chance of me enjoying the film.


This rant sums up the basics of my feelings on this subject. I have long thought about whether I should write this at all, because I have seen the flak caught by those who dared to object to Western third-wave feminism. As an egalitarian and humanist, I do feel that people like us should speak up more often, to stem the populism of feminism and its damaging effects on society. For the sake of equality and egalitarianism.

I do not think that feminists are terrible people, just misguided. I think that they truly believe that they are doing good, but they haven't gone through the same life experiences as others. Sometimes they really need to step back and reassess their interpretation of reality. Maybe realise that their version of reality does not include a large group of people, and likely butchers biological facts into an overly simplistic interpretation.


Maybe then I could finally just be able to watch films without all of these unneeded connotations.


Maya

Summary of my medical history

Since I now have an official medical coach, I needed to summarise my medical history so far, to help her make sense of all that has happened, been concluded and done so far. I must say that it's definitely an impressive list, if only in all the wrong ways.

Have a look, if you want:

2005

• Realisation of being intersex.
• First appointment at gender team at the VUmc in Amsterdam.
• Second appointment after half a year (with psychologist).
• Blood test supposedly shows normal testosterone levels (results not found in VUmc file).
• External examination by gynaecologist, who claims to see ‘no signs of intersex’.
• Last talk with psychologist before being dismissed.
• Letter is sent to GP describing Maya as showing ‘unusual behaviour for a transsexual’.
• Start of therapy at psychologist in Zutphen. First appointment psychologist describes Maya’s thoughts about being intersex as ‘delusional’.

2006

• Psychologist keeps trying to convince Maya that she cannot be intersex, but should just go back to the VUmc and follow the transsexual protocol.
• Maya relents and returns to the VUmc gender team.
• Multiple appointments with psychologists follow. The one before last appointment, the psychologist promises that Maya can already start on hormone therapy and that the number of psychologist sessions can be drastically reduced because of the many sessions Maya has already had with a psychologist.

2007

• The last psychologist appointment, all of these promises are withdrawn and Maya is told to follow the usual protocol of half a year of talks before any decision can be made. Maya gets angry, throws her belongings on the floor and leaves the room.
• The members of the VUmc gender team talk with Maya’s mother, asking her whether Maya is violent towards her, or even physically abuses her.
• After hearing of this, Maya cancels all outstanding appointments at the gender team.
• Maya orders testosterone blockers and estradiol via the internet and starts hormone therapy on her own, supported by hormone level tests provided by her GP.
• After a period of experimenting, Maya settles on 25 mg Androcur/day and 4 mg Progynova/day.
• On December 21, Maya has her first MRI scan in a private clinic in Germany. This shows her to have both male and female genitals (closed-off vagina, no prostate).

2008

• Maya’s GP sends MRI scan results to VUmc gender team. They immediately want to make an appointment.
• Results of the first chromosome test on Maya’s white blood cells: show XY pattern.
• At the VUmc, Maya is told that they didn’t see anything unusual on the MRI scans. They insist that she’s just a regular male.
• Official first name is changed to ‘Maya’ from the male first name by a Dutch court on the basis of her clearly female appearance.
• Appointment at the Erasmus hospital in Rotterdam. Leads to two MRI scans (September 11, November 6th). Both radiologist reports insist Maya is a normal male. Note is made of two testicles inside the scrotum, even though only one testicle ever fully descended.
• Multiple appointments at AMC hospital in Amsterdam with endocrinologist and finally with a gynaecologist. The latter talks with members from the VUmc gender team and concludes that Maya suffers from autoparagynaecophilia, a term indicating that Maya thinks that she looks physically female, even though she is not.

2009

• Start of appointments at second Dutch gender team in Groningen:
• Denial of any intersex condition.
• Insistence that Maya is physically fully male.
• Refusal to communicate with the German doctors who first diagnosed Maya with an intersex condition.
• Basic chromosomal testing (white blood cells, cells from inside of cheek) show 46,XY pattern.
• Insistence that Maya suffers from gender dysphoria.
• MRI scan at Onze Lieve Vrouwen Gasthuis hospital in Amsterdam (December). Radiologist report indicates no sign of an intersex condition.
• Diagnosed with Post-Traumatic Stress Disorder by psychotherapist.

2010

• More appointments at the second gender team, mostly with psychologist.
• Examination by urologist of the gender team, including a painful examination of the urinary tract and bladder. Conclusion is that there’s no sign of intersex. Entire day filmed by Dutch documentary team.
• Appointments at VUmc gender team, who offer to ‘turn her into beautiful woman’, but no physical examinations, just the transgender course.

2011

• Suicide attempt using sleeping pills after a forced eviction. Maya wakes up in the ER and is taken care of by her mother.
• Rejected by (Christian) GP due to her intersex condition.
• Poor treatment by new GP leads to a black-out event (triggered by PTSD, possible DID), during which Maya is subjected to severe violence by police who were called onto the scene. Maya suffers bruised bone in her right leg, severe bruising and peripheral neuropathy.
• Attempts to get help at John Hopkins Medical in the US, is rejected because ‘they don’t do sex-reassignment surgery’.
• Appointment with urologist at hospital in Almelo, gets told to seek help in Germany, forget about The Netherlands.
• Decision to focus on getting her legal gender changed, as her legal (male) gender does not match up with her appearance, which causes a lot of confusion.
• Has surgery in Hamburg, Germany, whereby the testicles are removed via an incision on the lower abdomen. An exploratory incision is made in the perineum whereby the entrance of a vagina is found.
• The biopsy of the removed testicles shows that they are underdeveloped, explaining the low testosterone levels and making clear that they never produced sperm.
• The use of Androcur is no longer needed and is dropped.

2012

• Maya’s legal gender is changed to ‘female’ based on the surgery’s findings of her having been born with both male and female genitals, using a never before used (1980s) Dutch law.
• Beginning of pain and numbness sensations on right side of the body.

2013

• Multiple appointments with a Dutch surgeon who specialises in reconstructive surgery, to determine the possibility of reconstructing the (closed-off) vagina.
• MRI scan at the MST hospital in Enschede. Radiologist concludes that there’s no sign of intersex.
• The surgeon refers Maya back to the VUmc gender team.
• Maya moves to Germany.

2014

• A reconstructive surgery is agreed upon with a German surgeon, but the surgery confirmation never comes and calls to the clinic go unanswered.
• Multiple appointments at the university hospital of Tubingen. Physical examination by surgeon. Blood test: shows 46,XY pattern for white blood cells, normal SRY.
• Another MRI scan is made, radiologist report indicates no signs of intersex.

2015

• Appearance of linea nigra on Maya’s abdomen. Multiple appointments with gynaecologist.
• Two MRI scans. The same radiologist first sees a healthy vagina, the second time no vagina or signs of intersex are seen.
• Appointment at new endocrinologist. Multiple hormone level tests, with and without taking artificial estradiol. Maya’s estradiol levels without hormone therapy are found to be normal female levels.
• Presence of at least one functional ovary is presumed, along with a monthly cycle since the age of 11.
• Maya no longer takes any form of hormone therapy.

2016

• Linea nigra vanishes.
• Maya awaits updates on a possible surgeon contact.
• Monthly pains are becoming very significant, along with increasing numbness in right leg.

2017

• Surgeon appointment, with Maya referred to an intersex specialist. Surgeon is uncertain about Maya’s intersex condition.
• Monthly numbness and pain spreads to the entire right side of Maya’s body.

Accepting help also means accepting that one has a problem

The past days has seen the numbness and pain in the right side of my body virtually disappear again, as my body goes through the motions of its monthly cycle again. It's a nice week or so of respite from having to worry about me turning into a permanently crippled person. Because of this variation in the symptoms, I do not expect that the MRI scan in two weeks will show anything to be wrong with my brain or spinal column. Best to be safe, of course. Plus it's nice to have that tenth MRI scan achievement unlocked, I guess.

As the scope of the medical and psychological help which I'm receiving slowly expands, I now find myself with a psychotherapist for regular therapy for my PTSD and other traumas, another psychotherapist who acts as a medical coach to handle contact with clinics, doctors and so on. Getting proper communication out of this intersex clinic - my next target - is slow, frustrating and thus I'm glad that I now have someone who is doing all of that for me, after twelve years of me dealing with it directly.


All of this means a large number of appointments and both help, but also the constant confrontation with my problems. From PTSD, various traumas and other psychological issues which have build up over decades, to the twelve years of horrible frustration and maltreatment of my intersex condition which may now be causing these physical issues that are causing me chronic pain. Even without an active eviction case against me this would be a lot to deal with. Add that to the mixture, realise that a negative outcome in that case may push me to try my luck at suicide again, and the need for intensive therapy and other forms of support becomes very obvious.

Without the stabilising influence of my day job and my friends, I would most likely already have been put on suicide watch. As things stand, I'm already skirting pretty close to the point where my therapists would feel obligated to interfere.


Here again I am confronted with the stigma of mental illness: you cannot see it, so it cannot be there. Me feeling suicidal must therefore be a conscious choice, ergo I can just stop thinking that way. The reality of the matter of course being that I am not actually a person suffering from depression, but merely someone who has felt so threatened and has been repeatedly attacked by others for over a decade, that it has made the thought of continuing to live... unpleasant.

I just want people to leave me alone. I didn't do anything wrong. People should just do their job and act like decent human beings. The past twelve years have shown to me beyond a shade of doubt that most people are (unknowingly) evil or just don't care. This is not the world I'd want to live in. Thus I focus on the decent human beings in the world, but one can only ignore the former nightmare world for so long.


Maybe I just have terrible luck and have come across every single terrible excuse for a doctor, psychologist, landlord, 'friend' and what not. While going through therapy, I have to go back to parts of my life which I do not care to remember, as well as some parts which I would love to go back to.

I still don't know what happened when I was a young child that was traumatic enough that it completely changed my behaviour. All I know is that my traumas likely started back when I was almost too young to remember anything. Likely someone did something to me, just like with what happened to my cousin when her uncle and grandfather couldn't keep their filthy hands off her body and those of other young girls like her.

It may very well have been that I grew up basically from the age of five with the knowledge and expectation that people are horrible monsters, who will always seek to take advantage of you. It would explain why I have seemingly always felt so apprehensive of others since the age of six. Even though I have been consciously trying to change this since I found out about being intersex in 2005 - pushing myself to return to that extroverted personality that I had as a child - along the way I come across the same traumas which pushed me into becoming introverted in the first place.


All I can hope for at this point is that I can at least win the eviction case so that I do not have to deal with that any more. I feel my life is complicated enough already at this point without others making it more difficult simply because they're greedy and care not about their fellow humans.


Maya

Who'll catch me when I fall?

Last Friday I noticed that after a meeting at work, my right arm had begun hurting quite a lot, along with numbness and strong discomfort in the entirety of my body's right side. Including the right side of my face. Even though I had been dealing with numbness and pain in my right leg and arm in some form for the past months (and years in a milder form), this was a disconcerting new development.

I didn't tell anyone about this issue, just went back to my place and took one, then another ibuprofen (800 mg total). After about half an hour the pain had decreased significantly and with an hour I was almost feeling normal again. Before the pain started decreasing, I feared that it might worsen to the point where I'd collapse and find myself in the ER again.


The numbness and pain in my body's right side just keeps increasing. The past months far quicker than before, progressing from just the numbness in the leg for a few hours and occasional pain in my right arm to a full week of an unusable leg and currently near-constant numbness and pain in the entire right side of my body.

On Tuesday I had a neurologist appointment for this issue, after my GP reserved an emergency slot for me. I now have an MRI scan scheduled of my head and neck region (tenth MRI scan, yay), to rule out any possible issues in that area. The neurologist does however think that something like endometriosis is more likely as cause, considering the cyclic nature of the symptoms. My hope now lies with this intersex clinic with which my psychotherapist and myself have been trying to get into contact with for the past months now, without much success.

Maybe the MRI scan will show something, but most likely not. Meanwhile I'm taking ibuprofen like candy as it's the only thing which actually seems to do anything about the symptoms. Exercise seems to make the symptoms worse, but sometimes lying in bed as well, which makes it hard to find an approach which always works. I have started again on the anti-conception pill in the hope that if it's indeed hormonal, it will reduce the symptoms. I should know soon whether this theory is correct.

Meanwhile it practically feels as if my body is splitting into two halves, with the right side slowly shutting itself down.


I have to wonder what the impact of excessive stress on this all is, as I'm still facing getting evicted out of this apartment despite not having done anything wrong. Except maybe not complain enough, apparently. The thought that there are people out there who quite literally would be fine with me dying on the spot (which would be cheaper than an eviction), and that there's no home for me out there is more than one can humanly bear.

What'll happen when everything goes wrong? I already know that if I am forced to find another apartment, or even pay a large sum of money, it'll destabilise me emotionally in ways which are more than just frightening. There'd be a real chance of me committing suicide. I know from experience that all it takes is to have access to an easy and acceptable method.

After months of excessive stress I don't really care that much about whether I survive or not. Between getting evicted, my body slowly failing and the intersex clinic between completely unhelpful so far, I don't have anything to live for. Not really.


I love my work and my hobbies, but it cannot stand against the incredible pain of being alive if all it means getting punished over and over again. Punished for being born intersex. Punished for following the rules. Punished for being an abject failure.

I expect to be evicted. I expect my body to fail me probably this year, rendering me a cripple or killing me. I don't expect there to be any help. I do not have the energy to fight to survive any more. I cannot deal with an eviction. I'd just give up. Live on the streets until I die. Because giving into fatalism is the only thing which I can do, along with punishing this horrible body of mine by hurting it for hurting me.

I need others to give me hope again. To make me see that life isn't only about suffering and death. That this body of mine is okay. That there's nothing wrong with me. That I do not have to fear landlords randomly kicking me out of rundown apartments for daring to complain about issues. That I do have a future.


I want to believe, but I cannot. All that I know, all that I understand, and all that I long for is this incredible sense of peace which I felt during those moments before I tried to commit suicide. I wish I hadn't failed. I so wish it all had ended already, six years ago. I regret failing at that more than anything. Next time I'll succeed at committing suicide. I promise.

So that I may finally find peace.


Maya

Why a home is more important than a body

At the age of almost two years old, I first lost my home. On Good Friday the farm house in which I was born burned to the ground, leaving nothing but ash mingled with the bones of the cattle who didn't manage to escape. The following years I lived with my family in a trailer while the new house was being constructed. Two years later this was completed and we moved into the new house as the trailer was removed.

This house I lived in until 2003, until my father wanted to divorce my mother so that he could marry the woman he had been cheating with for months. He also managed to pester my mother out of the house, leaving me and my younger brother with the choice of whom we wanted to stay with. Both of us went with our mother, moving into a small house in the nearby city.

While living at this house, I for the first time felt what it means to lose one's home. Within months, my father and his new wife had redecorated and changed the house in which I had been raised so that I could no longer recognise it. My father also disowned me and my younger brother, so that there was no way back for us any more. He might as well have burned the place to the ground.


After this we moved to the other side of the country, then I moved to Canada for a short while, ended up back in the Netherlands, basically couch surfing because I had no place of my own, until ultimately ending up trying to commit suicide. After that failed attempt I stayed at my mother's place for a while, before getting a job and apartment.

Sharing this apartment with a less than emotionally stable person, I suffered months of physical and verbal abuse until I was force to basically run out of the door. When I returned a few months later, all of my belongings were gone, and nobody could do anything.

This led to me living for a while again at my mother's place until I finally moved to Germany, where the first apartment was uninhabitable and the second (current) one sees me currently dealing with an eviction case.


I first started dealing with my intersex condition back in 2005, shortly after moving to the other side of the Netherlands. Not having a body and a home have been central themes for those more than twelve years. Yet I would definitely say that not having a home is the worst, by far.

Even though I do not know exactly what my body is and why I'm having chronic pains, I'm still not fully crippled. I can still work, visit places and have fun with my hobbies. Without a home all of that is at risk. With the constant terror of a pending eviction any motivation or hope on a better life gets drained. There's no quiet, safe place to retire to, as it's a constant concern.

Not having a home definitely causes me far more stress than not having a body. Physical pains can be ignored and despite all of the issues it gives me, my body is still in relatively okay health. Psychological pain cannot be ignored. As minor progress got made over the years on my intersex case, much of the uncertainty got removed. With two weeks I'm seeing a neurologist for the numbness and pains in the limbs on the right side of my body. Physically things will get better, probably.


Yet none of that helps me with getting a home. Even though I have done nothing wrong, depending on how the opposing side plays it, I could still face eviction. As I noticed over the past months, whenever I force myself to find a new apartment or better, it causes an incredible amount of stress and even minor setbacks or irregularities are likely to trigger a suicidal depression. Two weekends spent crying, clawing at my body, thinking of plunging sharp knives into my abdomen or cutting my wrists, etc. is more than enough.

Anyone who feels that I should just 'suck it up' and go through all of that again and maybe truly end up trying to commit suicide again can go get a can of gasoline, pour it over themselves and light a match. Maybe then they'll be able to sympathise with the psychological pain searching for a new home puts me through.


The funny thing is that even though I'd be perfectly fine with being put to death right now instead of facing this drawn out eviction case, I'd still want to continue living and work on becoming happy. I guess I'm just tired of always fighting. Kill me. Let me live. I don't care. Just don't make me suffer any longer.


Maya

Don't call me a liar

The past months have given me ample time to think and reflect on things, including the specific reasons why the eviction case I'm dealing with upsets me so much. It being baseless and an aggressive attack to shut down tenant's rights is pretty bad already, but there's something more. Something far more fundamental. Something about me being a liar.

What's the central theme about the past twelve years that I have struggled to find recognition and help for my intersex condition? Being called a liar. About making up being intersex, having female genitals. Lying about having a period and monthly pains. Lying about worsening chronic pains. Even as the physical evidence kept mounting, the accusations kept coming.

The eviction case is similar: I have identified a problem to the best of my abilities, followed all the rules and then get assaulted regardless, called a liar and a thief, and have my integrity as a person cast into doubt again.

Clearly following the rules is meaningless. Being a nice person only helps others.

The only truth which matters is the one which those who are more powerful can force upon those who are weaker.

Ergo, I'm a liar and deserve all the misery which comes my way.


Maya

The meaning of life when on death row

Imagine: there are two worlds, two realities. One is accessed via the internet-connected laptop you have, offering you contact with millions of people, access to a near-infinite amount of information and glimpses of a hope-filled and bright future. The other reality is the one you find yourself in whenever you aren't engrossed in the former world inside your laptop.

The former world fills you with hope and joy. The latter is the bleak reality of death row.


For years now I have had recurrent dreams in which I am walking through a crowd of people, all apparently gathered for a party or similar. They are busily talking with each other, all engrossed in whichever topic they're talking about. I do not talk with anyone, or even try to talk with anyone. Throughout this, I know with absolute certainty that come tomorrow, I will be executed, ergo why would I bother?

In these dreams, every time that I begin to feel interested in something around me, the feeling is immediately crushed by the bitterness of the futility of it all. Tomorrow I will die. None of what I do right now matters. Yet nobody around me can even begin to understand what I am going through. If they were interested at all, which none of them appear to be. I feel like I'm already dead and just wandering through the world of the living as a ghost.


I think that for me it all started around the time that I finished high school and before my parents divorced. That was the point where I began to fully lose any concept of 'self', or more specifically of what it meant to have a body. After being forced to move out of the house in which I had grown up, I fell back into myself, neglecting my body beyond the most basic needs to feed and clean it.

During the last year of high school I had finally found out one reason why I wasn't like the people around me, when a giftedness study at a Dutch university showed me to be both a 100% visual learner and highly gifted individual. Unfortunately this knowledge didn't come with associated help with how to deal with it, nor did it tell me what I needed know about what my body is.


For some reason it feels as though back when I still thought that I had a male body I had more freedom. Ever since I found out about my body being hermaphroditic have things gone from bad to worse. Yet I had to find out. I had to know. I did not expect to be punished for this. I did not expect that it would result in me suffering horrible psychological trauma, rape, beatings and getting locked up for crimes I did not commit.

That day in early 2005 when I first travelled to the gender team at the VUmc hospital in Amsterdam feels like the day when I got arrested and locked up for the crime of having been born like this. Over the course of the following years I went through countless appeals and medical examinations, all in the hope to overturn these charges of being transgender, crazy, etc.

Yet none of it seems to have changed anything. None of it matters. The medical evidence is still deemed contradictory, despite my body clearly not being male, what with a primarily female phenotype and natural female hormone levels and even a monthly cycle. It's all irrelevant. I'm still not getting help, nor will I ever be released from death row.


Dealing with the current eviction court case and the bleak prospects of finding a home only serve to reinforce what I already knew years ago: innocent or not, I will be executed. Soon the extra time I had for appeals and help will run out and I will cease to exist.

As a result I also know that none of what I might want matters, nor do any of my plans and hope for the future matter. Why would I work on any projects, or be really invested in work or getting money back from taxes, or feel remotely interested in pointless things like vacations, relationships and the like?

It all feels exactly like those dreams. The world around me goes on, but before long my existence will be snuffed out.

And none of this will matter.


Maya

Sciatica, or: welcome to another personal hell

Today while at work I had my right leg suddenly go numb again. It's the same thing as the previous times, basically: the leg turning wooden, being unable to move it voluntarily and only being able to wobble around on said leg as if it's a prosthetic limb, pretty much. Sensation is reduced to a numbness, with occasional sharp pains and tingling.

Earlier someone on Twitter recognised the symptoms as I described them and asked me whether it could be sciatica [1]. Unsurprisingly it's a good match. Essentially it occurs when the root of the lower lumbar and/or lumbosacral spine become irritated. This can happen for a variety of reasons, including pregnancy [2].

This diagnosis also gives an explanation for the pain in my hips, which is how this all started, about 5 years ago now. Back then it was mostly the pain in my hip, with occasional pain in my right leg. Over time this has become worse, to the point where there are now days when I simply cannot walk properly, and am in pain the entire time.

Another constant which I have noticed over the past months is that whenever I have these sciatica symptoms, I also experience pain in the lower abdominal and vaginal area, including the at times excruciating pain during a toilet visit. This is all indicative of there being something in the lower abdomen which is irritated, swollen, inflamed, or a combination thereof.

I have already contacted my GP about this and hope that I can get some kind of diagnosis now of the underlying cause for these symptoms. Most likely it's due to my period, the associated hormonal changes and my unique physiology as a hermaphrodite. Most worrying about it is that the symptoms are becoming more severe, which warrants immediate medical attention. Hopefully that will work out for once, and I won't be still writing about it in ten years, while crippled and bed-bound, or something.

Can my life please get boring yet? :(


Maya


[1] http://www.mayoclinic.org/diseases-conditions/sciatica/basics/definition/con-20026478
[2] http://www.webmd.com/back-pain/guide/sciatica-symptoms

Absolute terror and looking for an escape

Last Monday I was sitting at the a table in the local hackerspace, just having fetched and consumed dinner along with a couple of others. Suddenly I felt a tingling sensation in my right leg which rapidly got worse. Within minutes the leg had gone fully numb except for occasional surges of pain in the appendage. For the next hours I had to wait and hope that I'd get the sensation back in the leg before I could cycle home.

Last night I got woken up because my right arm was tingling and hurting. After a couple of minutes the pain lessened and I was able to fall asleep again. For the past days I can feel a numbness and mild discomfort in both my right leg and arm. To say that this is disconcerting would be an understatement.


For the past twelve years, it's been made very clear to me that do not know what I am talking about. All pains I merely imagine. Everything that I think my body is, is false.

It hasn't just been with medical things, either. Working my last job in the Netherlands was unpleasant and traumatising, along with the horror that was sharing an apartment with someone who did absolutely not have my well-being in mind and which ultimately led to me losing all of my belongings. It's not been easy to keep believing that things could get better.

Meanwhile I have a good job at a great employer, yet to get there hasn't been easy, either. Medically some progress has been made, but it looks like I still have many years - if not decades - ahead of me to get anything like a resolution. Anything beyond this... just no. Forget it.


Whenever I try to think of my future, or merely try thinking of heading to the run-down apartment I currently live in, my mind practically blanks out in fear. When thinking of contacting a real-estate agent to get started on finding that house to buy, there's about 1-3% of my mind which feels up to it, with the rest again blanking out in complete terror.

Most of my days are filled with the struggle against that general sensation of terror, accompanied by brief or longer periods where I find myself thinking about suicide.


When people then tell me to think about how great it would be to have a house of my own, and that I should look at real-estate websites for homes for sale, they are completely missing the point. Such things are guaranteed to make me feel that terror because of all the uncertainties and crushing disappointments which come naturally with such things. It's a sensation which I can resist for a short while (minutes, maybe), but beyond that it will invoke a suicidal depression because of it having drained my energy and with it the resistance against such thoughts.

In short, I can't do this.


I can maybe work up the energy to contact a real-estate agent and pray that this will suffice. I would also have to get a loan together, which would also be very emotionally taxing, but very likely less so than dealing with landlords and kin. Being confronted with my actual monetary worth (or lack thereof), is depressing, but at least I wouldn't be judged by anyone as a person.

Yet none of this will be easy. I'm not sure anyone here comes even close to understanding any of this. How would I even be able to explain any of this to someone else? Between being intersex, gifted, hyper-sensitive, ambidextrous and severely traumatised, I don't really feel like I am inhabiting the same universe as others. It would definitely explain why others keep expecting me to be able to do all the things which they can do.


I have a traumatic disorder. I cannot function in daily life the way others easily can. My traumatic experiences colour the world around me in a bleak and horrifying way most of the time. I cannot bring myself to trust people. Not yet. Not at this point. Not after everything that they have done to me. It frustrates me so incredibly that people will listen to me talk about all of this, then smile, nod and just tell me 'good luck', as if none of what I experienced and suffered was relevant, or real.

The chronic pains I suffer are real. The traumatic disorders are real. I can choose to ignore both, but doing so will not help me in any way. Other people ignoring both is not helpful, or right. Both have to be acknowledged and handled appropriately. Anything else will just increase my suffering.


Maybe I'm just misunderstanding this all, though. After all these years of not knowing what my body is, or who or what I am, and having multiple psychologists and kin judge me as being delusional, it could be me who is the problem.

I just want an escape out of this literal madness that I still find myself trapped in. Something has to make sense at some point. Probably. I hope so.


I have no clue who or what I am. Whether up is up or actually down. Maybe left is right and right left. The sky is blood-red, not blue. Everything can be true. It's all relative. Maybe everyone is wrong. Maybe this is all just in my mind. Maybe this is what it feels like to go crazy. Just an endless nightmare.


Maya

Amnesia and chronic pain

Since the sudden flashback last week of an event out of my childhood, I have found myself remembering more and more things this week of both my childhood and time as teenager. Things which I was unable to remember before, no matter how much I tried.

It's really quite amazing how memory works, that before I would strain to try and remember something - anything - from those periods of my life, but was unable to. Yet now it's just a constant series of recollections that come flooding back.

From my mother remarking to me as a child how nice it was to be home again, to walking in line with other children during my preschool or primary school time, and the lunch hours during high school. Suddenly I can recall such things with absolute clarity again, down to the texture and colour of things in the scene.

It's both extremely nice to have access to these memories again, while also saddening that I had forgotten about them for so long. They are largely pleasant memories.


This sudden change in what is likely stress-induced amnesia comes against a background of worsening chronic pain. Today I found myself barely able to get out of bed, feeling sick and in pain.

Basically this entire day I have been suffering from a numbness in my right leg, strong pains in my lower back and an excruciating pain in the vaginal area. Essentially the usual chronic pains during this part of the month, only much worse than usual.

Despite sleeping a full seven hours with lots of periods of deep sleep according to the sensor which I wear around my wrist, I woke up feeling exhausted and dizzy. Part of me simply waits for the moment when suddenly something goes wrong and I'll collapse.

To me these pains are very worrying. Doctors have told me that they do not believe that when I menstruate any fluids are being produced. They don't believe I have endometriosis. Basically I shouldn't have these pains. Yet they're there. And I'm suffering.


Maybe the pain is nothing. Maybe it's a symptom that something is horribly wrong. Maybe not acting now is the worst thing that could happen. Maybe I'll horribly regret not pushing doctors even more to help me.

I think I did everything humanly possible and beyond during the past twelve years to get medical help, however. Dutch doctors merely told me to take painkillers for the pain. So far it's been a slow and frustrating process in Germany as well. Generally me having a monthly cycle has been denied over and over, along with continuing uncertainty about which female reproductive organs I actually have, even as a female hormonal cycle cannot be denied any more.

Yet I'm definitely not imagining this pain.


The past definitely was better. I am glad that I at least have these memories again. I just wish the future had worked out better. I hope things will improve. I do not want to fight any more. I just want to go back to living. Like I used to.


Maya

It's all in your head, they said

Transgender. Autoparagynaecophilia. Transsexual. Just a couple of the terms which doctors and psychologists have thrown at me over the past twelve years in order to convince me that my body is that of a guy and that I'm just a bit funny in the head.


The past days I have been dealing with the same painful symptoms as I have for years now. Sharp pains in what would be the vaginal area, followed by painful urination and defecation, as if something is inflamed in the area where I also feel the sharp pains and putting any kind of pressure on it causes a flare-up of pain. Pressing on the skin in that area is also exceedingly painful. Suffice it to say that it makes really uncomfortable for a few days each month.

These symptoms always come at the end of what can only be described as a monthly cycle. The symptoms of which became most prominent after the surgery in 2011 which saw both the vaginal area temporarily opened and the testicles removed. After this, probably due to the decrease in produced testosterone and associated breakdown products, my ovaries were able to become far more productive, causing them to produce normal female levels of estradiol. In summary, I have a regular and pretty darn painful menstruation cycle.


"Well, don't you just totally look like a guy."

It's one of the things which I'll regularly say to myself as I look in the mirror, at the curves of my hips, narrow waist and further feminine curves. Usually it's meant as a joke, yet it's still a massive point of frustration and anger for me that someone with a body like mine could be put away as being 'male', when it so clearly is not.

The past twelve years have been a struggle to learn to see my body as it truly is, with many facts only slowly becoming clear. Many facts about my body were discovered purely by accident, such as the fact that I have functioning ovaries which is the reason why I no longer have to take artificial estradiol or other hormones.

Me being able to see myself as being female (primarily) has taken me more than a decade and it's an ongoing process. The resistance I get from doctors and kin even today is not particularly helpful in this.


When I feel these pains every month, with the mentioned stabbing pains, a numb leg and painful or numb arm, I feel worried that there are things which I still do not know about this body of mine. Things which will cause me endless grief and pain if they don't get diagnosed and treated as soon as possible.

This reality I live in with this body is all too real for me. Yet it's a reality which doctors and psychologists along with others seem to have a great deal of trouble accepting let alone understand. I have been accused of making things up almost constantly, including by the last surgeon.


Maybe it's just that my case is too unique and unknown, that it scares doctors and psychologists because they feel that they are running into the limits of their own knowledge and refuse to admit to this. A small number have admitted to these limits towards me, yet still felt qualified to make unfounded statements about my body regardless.

The worst part of all this is probably that this utter lack of interest by doctors and society as a whole into my situation makes me feel that there's no reason to have any interest from my side into them, either. If they don't acknowledge and accept my existence, I may as well pretend that they're not real either.

Of course, only a medical professional can quite deny reality in such a manner.


Maya

A future in which I do not have to die

Today was a pretty terrible day, with my thoughts dominated by a feeling of certain doom and suicide. In short, a suicidal depression. Occasionally I can see glimpses of a future in which my intersex condition does get resolved and where I manage to find that great house. These glimpses do however not last, because the past decades have proven overwhelmingly to me that no matter what I attempt or dream of, it's all hopeless.

Last week's surgeon appointment proved once again to me that there won't be a resolution to my intersex case. There won't be any answers, surgery or anything else. Just an eternity of uncertainty, pain and worries about complications.

Having to attend another court case for something where I did nothing wrong and expecting that I will get the blame regardless. Realising that an eviction will likely be just what I need to push me into that same state as when I first tried to commit suicide. That feeling of absolute certainty which does not pass, even after a good night's sleep.


I'm terrified.


I do not wish to die.


Yet I do not know what people want from me.


Or what I should do.


Do I have to die?


Please just tell me.


It's okay.


Maya

Questionable intersexuality

I just found a letter in my mailbox from the surgeon who I visited in Munich last Thursday, containing a summary of his 'findings'. Forgive my French, but despite my rather more mild views of last week as I wrote them last Sunday, I find myself now thinking that this particular surgeon is a pretty impressive a*****e.

Despite not bothering to look at any of the documents sent to him over the past months and not interesting himself in my case beyond a casual glance during the half hour that I was there at the MRI scans and a singular fax with a basic summary, he still found it fit to conclude that my intersex diagnosis is 'questionable', that there's no evidence of endometriosis (suggesting that I just made it up) and concludes that when I am 'emotionally stable' I can come to him for 'normalisation surgery'.

In other words, he simultaneously denies me having an intersex condition, but still feels that he can 'correct' said intersex condition through surgical means. He also denies that I have any serious monthly symptoms.


Basically he thinks that I'm a liar and essentially crazy.


Despite me having a body with a definite female phenotype, a natural female hormone balance, a monthly hormonal cycle and basically not a single hint of me being even partially male beyond having a penis and XY chromosomes in some tissues, that all doesn't suffice. During the appointment he also insisted that because of the use of estradiol testosterone levels drop (untrue), which would explain why I only used a quarter of the testosterone blocker a male to female transsexual would use.

Basically this surgeon is just like every other DSD-supporting, genocidal, anti-intersex 'doctor' I have encountered over the years.


I can only hope that this new specialist isn't like that. Otherwise it's a dead end. At this point I feel more dissociated of my body than I have in a couple of years. I don't know what this stupid body is. I hate that I don't know it. It hurts to not know it. Feeling pain and numbness without knowing why terrifies me. All of it makes me want to hurt it out of fear and frustration.

I guess I must continue living. I guess. I don't know why. Not when it hurts. Not when people keep hurting me like this and denying me the right to even exist.

I'd still really like to die, though. Life isn't worth it. Not for me. Not like this. Not without any perspective on a future.


Maya

When doctors aren't certain you're even human

Last Thursday was the appointment with the surgeon in Munich. Not many words have to be dedicated to describing the experience. Essentially I arrived after a three-hour journey, talked with the surgeon who - along with the assistant - was not aware of the (previously acknowledged) collection of documents, MRI scans, faxes, etc. previously sent to them by me, my doctors and my psychotherapist.

After this initial 'who are you and why are you here' moment of utter chaos, it then quickly turned into an awkward situation where the surgeon asked me why I had even come to him, as he could do nothing for me, since it wasn't at all clear what the composition of my body is, let alone which specific surgical procedure could be applied.


On the bright side, he did give me the name of a supposed intersex specialist, and that at a cost of only sixty Euro to me for the consultation. I will now have to contact this person, starting essentially from scratch on the whole research and diagnostics thing. With this new specialist the past twelve years of diagnostics, symptoms, surgeries, MRI scans, blood tests, chromosome testing, etc. etc. will have to be reviewed to determine how a conclusive diagnosis can be reached.

In short, I'm more or less at the exact same point now as I was nearly ten years ago, shortly after the first MRI scan was made.


While I'd love nothing more than to just say 'screw this' and give up on this whole useless 'intersex' thing, I'm also painfully aware of the fact that I have no choice but to continue on this course. I cannot ignore the PTSD which I suffered as a result of the traumatic past decades of my life, nor can I ignore the monthly cyclic pains and the potentially harmful issues they may be a symptom of.

I do not wish to live the rest of my life in such absolute uncertainty and fear.


With about a week I'll meet up with the doctors who are handling my case here, in order to discuss the next steps. I am hopeful that they can at least handle some of the communications with this new specialist. After that it's waiting to see which tests and examinations I'll have to undergo. Biopsies are likely, as is genetic testing and more detailed MRI scans.

Along with all of that, I wish that I had already moved into that house in the countryside, to at least have that peaceful home to feel safe and relax at. With the eviction court case against me next month, it appears that there's going to be nothing easy or relaxing about this year either.


Maya

First dream about being a hermaphrodite

Last night I had the first dream in which I knew that I was a hermaphrodite. That may sound weird considering that I have known that I am intersex for nearly twelve years now, and a hermaphrodite since the first MRI scan in late 2007. The only dream (or rather nightmare) that somewhat came close was one in which I was lying on a surgery table, unable to move at first, while doctors talked about how they'd 'fix me'.

Last night's dream was different. I remember walking through a hallway, up some stairs and coming across this group of people who I apparently knew. I felt pretty much the way I feel when awake, only far more relaxed and self-assured. While talking with this group of people I suddenly clutched my abdomen in pain, doubling over. A woman in the group then told me whilst smiling that that was also part of being a hermaphrodite. They were just menstruation pains, after all.

This dream felt good. Relaxed. Comfortable.

That it took so long to have a dream like that in which I could just be myself is probably because society still doesn't allow people like me to be ourselves. We intersex people do not exist, officially. None of us are registered as such when we're born, but instead we have to live fake lives with fake identities. I may finally get medical help this year, or maybe not, again.

I really hope that this dream can become reality some day for me, and others like me.

It would be nice to not have to escape into our dreams for it.


Maya