Saturday 30 May 2015

The more you want to live, the closer death gets

Some of my most vivid and easiest to remember dreams are those in which I am having a good time, hanging out with others, chatting, drinking and eating and not having a care in the world. Other than this pesky voice in the back of my mind which has to keep reminding me that tomorrow I'll be executed. This reminder makes me feel angry for a moment, at those who had to condemn me to die. Yet soon that fades and I just feel resignation and a profound sensation of incredible sadness. I feel I do not wish to die, yet I know that I am helpless to stop it. Come tomorrow morning my existence will end.

These dreams are in many ways a succinct summary of my life the past decade and some. Anything I try, anything I do only reminds me that no matter which way I turn only death awaits me. My only options are whether it'll occur at my own hands,or whether it'll happen through the unavoidable complications of the intersex condition I was cursed with. The latter is the option I'm facing now, as I failed at the first one, and I'm too afraid, too frightened to attempt to end my own existence again. Ironically this is mostly because I want to live more badly than I did two years ago.

Yet the more struggle, the more I fight against what feels like sheer inevitability, the more this net and its strong knots tighten around me until I can no longer draw breath. By fighting to live it becomes harder to do just that. At the same time resigning myself to the inevitable and just going along with physicians and psychologists leads to the horrible emotional numbness while my mind tries its hardest to ignore the fact that my body is destroying itself. Yet medical help is impossible, as the past decade has made abundantly clear. They never find anything. I must simply be crazy. There's no escape, just the noose further tightening around my neck as I struggle to get free.

I'm now living with chronic pain since the beginning of this year without any hint of what's happening beyond the appearance of more and more confounding and seemingly impossible symptoms. For all I know I'll be collapsing next week on the streets, at the office, while shopping, or at some other completely arbitrary location and point in time, and die before I can be brought to a hospital.

The irony is that the more real and tangible the prospect of me dying gets, the more I realize just how much I want to live. Sure, many things are still horrible and need to be fixed, but that can all be done. I just need to get that fair chance which I haven't missed out on so far. I'll beg, plead, steal and cheat to be able to live a normal, pain-free life. The prospect of being told a few weeks from now that they were unfortunately too late in catching it and if only someone had bothered to examine me sooner... I think I'll just resign myself to the end of this existence. I did my best.

Yet just like in my dreams I will be going through all the inevitable stages before resigning myself to such a tragic fate. Right now I still hold hope that it'll all turn out fine.

Naive hope based on no evidence whatsoever is such a comfortable lie.


Maya

Saturday 23 May 2015

Let's try some of this relaxation whatchamacallit

After another rather hectic day at work yesterday which had me feeling almost feverish, with shaking hands and a profound feeling of being sick, I figured that I should take it easier today. Especially because when I got home yesterday the first thing I did was sleep for three hours, wake up, eat something and went straight to bed afterwards. Yet even waking up this morning I was feeling drained of energy, with the strange distortion of my hearing on the left side being present again somewhat.

Thus today I did not work on any of these chapters I still have to finish for the book I'm writing for Packt Publishing, nor did I do anything else project-wise. The most strenuous thing I have done all day was some research into further equipment I may wish to purchase for my growing electronics laboratory/workshop.

After purchasing an oscilloscope and electronic load so far, I'm now looking at obtaining a power factor meter and an insulation tester. This focused on the testing of power supplies I wish to perform for a series of articles, with as main focus those USB power adapters commonly used to charge phones and tablets. They are used everywhere, but their general quality is at best debatable and at worst lethal, as some people have found out the past years. With power supply quality one of my electronics pet peeves, I figured that it'd be a nice start for this new electronics site with accompanying YouTube channel I wish to start this year.

Beyond said research I also watched more episodes of this anime series I'm currently rewatching, called Gilgamesh. The fun thing about this series is that I watched it years ago, but only recalled that it was pretty darn good, while being unable to recall any specific scenes beyond those at the very beginning. I'm nearly at the end now, and I must agree with my past self that it's a pretty darn good series, with a good, subtle plot, believable characters and a story which has you coming back for more. The ending better not disappoint me or I'll have to be angry at my past self for lying to me.

One such series which I simply cannot rewatch even though it was awesome for the most part is Shingetsutan Tsukihime. The ending just completely ruins the entire story and everything that has been built up at that point. Maybe I should just read the manga there and hope that it's better. It's always a shame when an anime ruins the manga's story, but there you go. At least it's not as bad as Hollywood's attempts at interpreting classic works for its target audience. Now that's just bloody.

Despite not doing much of note today I still notice that as my energy levels drop I begin to feel this sense of profound sadness and forlornness creeping into my mind again. It's not as bad as yesterday, when upon returning home I felt done with everything and everyone, just wanting to bury myself and forget the world exists for at least the weekend. Or on Thursday when I had an emotional collapse once home, ending up coming pretty close to more permanent forms of self-harm. Right now I'm not feeling particularly like hitting myself, nor futilely trying to crush my skull with my bare hands in order to silence the pain inside. All that fun stuff.

Today's main purpose is to allow me to recharge some and hopefully regain some sense of me being an actual human being. With all the medical experimentation and super-urgent work being pushed onto me, it's often easy to forget that I'm more than a medical experiment and more than just a cute little cog in some monstrous machine. Forgetting about ridiculous superfluous and incredibly painful things like gender, sexuality and such is also an important part of this exercise.

On days like these it's totally fine to just sit inside all day in front of a computer screen in your training slacks or whatever else feels comfortable to wear. There's nothing to prove, nothing to accomplish. Just the wholesome activity of letting one's mind wander about. I could not possibly go on vacation, let alone relax during one, but I can shut out the world for just a little bit like this for much of a day.

The next two days it's back to grinding on these last chapters, however. Then on Tuesday I'll get to see the results of my desperate efforts to put a release build together on Friday. I cannot wait.

But for the rest of today... nothing in particular.

Maybe I can learn to properly relax some day :)


Maya

Thursday 21 May 2015

Welcome to the waiting games

The interesting thing about living under extreme stress for a very long period of time is that your relative estimation of how stressed you feel keeps shifting. When for me the primary comparison point is that of existential terror, then a merely life-changing event can be shrugged off as no big deal. The other interesting thing about this all is that your body doesn't give a damn about what your mind thinks. That's why yesterday and for half the day today from the moment I woke up I was dealing with my left hearing having gone completely bonkers, with each sound coming in through my left ear sounding heavily distorted, muffled and with a bizarre reverb effect applied. It made listening to other people talk or just going to the toilet or any other place with running water a bit of torture.

Yesterday I vented a lot of my feelings on the subject of me waiting for test and examination results. Today I got the results from my gynaecologist after he called me shortly after noon to discuss matters. In short, the pregnancy test was negative, no inflammation factors were found in my blood either, and my liver, kidneys are healthy. While I was freaking out for most of yesterday and this morning, I must admit to feeling most relieved at this news, as it was basically as expected. It also means that I can have next month's MRI scan with contrast dye without any issues.

What it also does mean is that unless the MRI scan shows something interesting in about three weeks time, I'm definitely in for the long haul. My gynaecologist still cannot offer me an explanation for the appearance of the linea nigra on my abdomen, or for the abdominal and vaginal pains and cramping I suffer. Maybe at the very least the MRI scan will show what exactly is happening inside my abdomen that it has become so swollen and is apparently pressing on nerves, including those of my right leg.

While I felt mostly relief at the test results, and the weird issues with my hearing on the left side vanished pretty much along with it, I still cannot help but feel a sense of bitterness at that after more than a decade of trying to find medical help it's now seemingly taking the development of real, tangible medical complications to be taken seriously. More than a decade during which I had no chance to develop myself much as a person, let alone learn to or make time for connecting with others.

At the sight of this female couple walking hand in hand on the streets today on my way home I could only feel the bitterness and sadness welling up inside of me as I realized that my life likely won't ever be like that. There's only hospitals, doctors and controversy for me. That's what having this body means. Even if someone out there were to desire contact with me, maybe even a relationship, there's simply no way for that to become reality. Not while I'm still waiting to figure out what the hell this body I found myself in all those years ago even is. All I can offer another person is a body I do not care about since I do not know it, and a tortured, traumatised and broken psyche.

Maybe things will get better if there's an actual end to this waiting game. Maybe not. For now all I can do is soldier on, no matter how garish my wounds or how excruciating the pain, for to give up is to die. Maybe I'll have to suffer another decade. Maybe it'll all be resolved this year. There's no solution, no answers, no end. Just the endless horizon I will keep walking towards until this worthless body finally succumbs to the ravages of time. Who needs to enjoy life, or spend a moment without pain, when you can merely exist?

This body exists to torture me. That's its sole function and all it will ever mean to me.


Maya

Wednesday 20 May 2015

Waiting for results and the expectation of nothing

The 21st of December 2007 is a date which I'll never forget. It was the day when I had the first real examination after nearly two years of struggling through and losing against the Dutch 'healthcare' system. The MRI scan which was scheduled for this day would however not take place in the Netherlands, but in Germany instead, as what I was about to do on that day was completely illegal in the Netherlands. What this scan should show me on that day was whether or not I am in fact intersex, possibly a hermaphrodite, which was what I had surmised based upon my own research, despite fierce opposition from Dutch 'healthcare professionals'.

On that day I could not eat a single bite before my mother and I left by car to the private clinic in Germany. I knew I had been thorough in my research and examinations. I knew that there was at least a grain of truth in my theories up to that point. Yet despite everything I had reasoned together intellectually, my heart still refused to go along in it. Even after the MRI scan, while waiting the thirty minutes before we would hear the results, I dreaded hearing the results more than anything. I could already imagine being told that I had just imagined everything.

Standing there in the room where the radiologist was already waiting for me, I knew for certain that if I got told that they had not seen any trace of an intersex condition, I'd just sink through the floor right then and there. Fortunately on that day it took less than two sentences from the radiologist for me to completely abandon any trace of trepidation, as the radiologist kept gushing about how amazing everything she saw on these scan images was. That day taught me the meaning of 'as if floating on clouds'. It was and still is one of my most memorable and treasured days, as it finally gave me the feeling of knowing what was going on with my body.

Fast forward through over eight years of largely disappointing or just simply useless (Dutch) medical conclusions, all of it aimed at trying to undermine the German findings. Even a second German medical conclusion, based upon exploratory surgery in 2011, which confirmed the original German MRI findings, did not sway their opinions. Instead of solidifying that amazing feeling of certainty then at the end of 2007, every fact became more and more muddled, until I had no real notion of who or what I was any more.

Tomorrow morning I'll be calling my gynaecologist's office to hear the results of the blood test. This because of the abdominal distension, cramps, vaginal pain and many other symptoms, including at least one which should be exclusive to pregnancies. While these blood tests should be showing at least something, there's still this nagging voice in the back of my mind informing me that I'm imagining these abdominal issues, and that I created any symptoms myself, using my subconsciousness.

What reason do I have after all to assume that anything I think or feel is true, and not just me being crazy, as countless healthcare professionals have tried to tell me for a decade now? I cannot possibly have medical complications due to an intersex condition like hermaphroditism, as I have been told over and over by very learned people that I am not intersex. I didn't study medicine. I was just born into this body and just have access to information which I try to fit onto the symptoms I see.

That I have learned the finer points of differential diagnostics, have learned to interpret MRI scans, have gained intimate knowledge of the biology of the reproductive organs, the biochemistry of related hormones, genetics and the medical background of the many types of intersex conditions is all of no relevance whatsoever.

My fear is that tomorrow morning I'll be told that nothing unusual was found with the lab tests, as this will confirm to me that I imagined all of it. That all of the symptoms are only there because I am willing them to happen on a subconscious level. That I didn't know what the hell this 'linea nigra' thing was until less than a week ago is of no relevance. I willed it into being anyway because of some reason.

Nothing truly makes sense. I'm intersex and not intersex. I'm a woman and I'm not a woman. I'm pregnant and I'm not pregnant. One doctor vehemently disagrees with another doctor about what this body of mine is. I'm suffering chronic pain, but there's nothing going on.

Some days one's grasp on sanity seems tenuous at best.


Maya

Monday 18 May 2015

Achievement unlocked: first pregnancy test

Today was the Big Day: seeing my gynaecologist about the current abdominal troubles I'm having. While feeling relatively nervous about it, for some reason I didn't feel too worried. I killed some time in the waiting room by browsing around on my smartphone while the room filled up with more people. I was second in line, being shown to the gynaecologist's room and off things went. I was pleased to noticed that the gynaecologist still remembered that I prefer to discuss such things in English, which made it much easier for me to describe everything that had happened between the last time I had seen im half-way last year and today.

I told him about the increasing abdominal pains, the distended abdomen, the numbness in my right leg, and ultimately the dark vertical line on my lower abdomen. To my relief he didn't dismiss any of it, instead trying to come up with ways to figure out what is going on. It appeared that he was as intrigued and mystified by the going-ons as I am. After going the symptoms a number of times, he suggested that I should have an MRI scan of the lower abdomen and the genitals/reproductive organs, with the instructions to the radiologist making it clear that there's uncertainty about the exact composition of my internal layout with regard to these organs.

He also wanted to perform a wide array of tests on my blood, one of which would actually test for indicators of pregnancy. Others would check for inflammation factors, specific hormone levels and general organ function. For this I will have to come back early tomorrow to have the blood taken, with the results known by Thursday.

After all this, the gynaecologist also wanted to see the dark line on my abdomen. While I was still lifting up my shirt to expose my abdomen he already indicated that he had seen enough. Apparently it was even more obvious for someone who sees this symptom of pregnancies on a pretty much daily basis. In a sense I am glad that I developed this symptom shortly (as far as I know...) before today's appointment, as it lends my story just that much more weight.

Finally, the gynaecologist also suggested sampling the bacteria in my vagina because of the feeling of inflammation and general pain I had reported there. Sadly I had to correct him here, since my vagina is still closed off, despite last year's attempt at having it surgically restored. Having a reconstructed vagina would have made a lot of things for me easier at this point. Unfortunately it's too late for that now.

After the appointment one of the assistants made an appointment for me at an MRI centre here in the city. Sadly that will take until about half-way next month, so a brief month that I'll still have to pull through.

Today the main symptoms are cramps in the lower abdomen, a feeling of being incredibly full as if I just had a seven-course dinner, even during the day with my only food at that point consisting out of two crackers I had for breakfast. A slight feeling of nausea also persists, accompanied by a mild headache, exhaustion and general lack of focus. As I write this, my food intake for the entire consists out of two crackers, two pieces of chocolate, one regular-sized plate of dinner, chocolate milk and a cookie. I'm feeling so stuffed that I'm afraid that if I push on my abdomen it'll acid reflux on me. The temptation to forego eating completely is quite strong.

I honestly do not really remember any more what it feels like to not have a body that feels filled with pain as well as bloated like an over-inflated balloon. I hope that the blood tests will give some results at least, because waiting a month for that MRI scan is going to be a tall order at this rate.

I'm still going to freak out if the test results show that I am in fact pregnant.


Maya

Sunday 17 May 2015

Thanks for the best wishes

Yesterday I had a lot of people congratulate me on the coming family expansion. Unless they were actually congratulating me on developing another curious symptom in my decades-long struggle with intersex, that is. If they weren't, then it appears that they had only read the title of the blog post in question which carried said title. I do appreciate the sentiment, though.

For me to actually be pregnant would require so many medical and biological miracles that if I were to give birth months from now, you can easily just wrap that blue mantle around my shoulders and call me the Virgin Maya. Not ever having had a male inject his seed inside of me, nor the lack of an accessible vagina, the presence of a uterus or fully functional ovaries could in that case prevent the miracle of life from taking hold inside my abdomen.

All that I know at this point is that apparently my body thinks it's pregnant and that something appears to be growing inside my abdomen. This 'something' could be anything from a benign growth to mere water retention to full-blown cancer. Something is pressing on nerves leading to my right leg. Something appears to be pushing on my other organs, causing lots of other fun symptoms. Something seems to be generating the right hormones a placenta would produce to trigger this linea nigra symptom.

Admittedly that last symptom seems to be pushing things really hard into the 'proper pregnancy' territory, but that would still run into the other issues mentioned earlier. Unless all doctors so far have been lying about that as well and I do in fact have a fully functional uterus, ovaries and what not. The emotions I'm going through after yesterday's discovery range from a weird sense of elation at the thought of being pregnant to severe frustration and anger towards physicians in general for not just being honest and simply doing their job. Being left in limbo like this isn't doing me any favours, though maybe physicians are secretly getting a kick out of it. I don't know.

Tomorrow afternoon is my gynaecologist appointment. My hope is that he'll see the point of referring me post-haste to a fully equipped clinic for proper examinations. If he doesn't and just wants me to fluff around with more hormone/medication experimentation... then he'll be my ex-gynaecologist and I'll have another to visit. Answers are required at this point. If a physician feels he knows better than me at this point despite not living inside this body, he or she can go take a long hike.

Frustrations aside, yesterday's discovery was in a sense something both shocking and very beautiful. I had not expected to suddenly come across a symptom which so strongly links what I am going through right now with a normal pregnancy. I also hadn't counted on my emotional response to this finding. It wasn't until then that it occurred that for all I know I might as well have a real child growing inside of me. With maternal feelings kicking in I suddenly felt really guilty for subjecting my abdomen to so much punishment the past months. Every punch and other frustrated action aimed at my swollen abdomen felt like a crime.

That's not to say that if I were to hold my hands on my abdomen now and feel kicking inside, I wouldn't completely freak out.

...though I kind of like the ring of this 'Virgin Maya' thing.


Maya

Saturday 16 May 2015

So, turns out I am pregnant after all

Yesterday I first noticed this funny brownish discolouration on my lower abdomen, running vertically from the groin region up to the navel. I didn't think much of it until I decided to see what a quick internet search would turn up. Turns out it's called 'Linea nigra' (black line) and is a common symptom during pregnancy. As Wikipedia [1] puts it:

"Linea nigra (Latin for "black line") is a dark vertical line that appears on the abdomen during about three quarters of all pregnancies. [..] Linea nigra is due to increased melanocyte-stimulating hormone made by the placenta,[3] which also causes melasma and darkened nipples."

Combine this with my distended abdomen, frequent bouts of nausea, changed eating habits and various other symptoms and one does begin to wonder just what is happening inside my tummy. Maybe an ultrasound at the gynaecologist on Monday will show me to be mere months away from starting my very own family. Stranger things have happened...

For the curious, here's a photograph of the aforementioned striped tummy:



Maya


[1] http://en.wikipedia.org/wiki/Linea_nigra

Relationships and the traumas of others

The book series I'm currently reading features a main character who tries to maintain a relationship with this woman who is heavily traumatized due to a horrific event when she was just a girl. Much of the story revolves around this main character trying to peel away the countless layers of scarring, misdirection, lies, aggression and everything else in an attempt to understand what daemons haunt her. For me this story definitely hits a lot of sensitive spots, as I can relate to many things in it from my own recent past.

The notion of wanting to help someone is a noble, but foolish one. Doubly so in a relationship, whether it's a voluntary one or not. A few years ago I got manipulated into entering a relationship with this one girl. All I can say is that at that time I was feeling incredibly alone and deserted by virtually everyone. To me it felt like some kind of validation of me as a person that I could actually get into a relationship. In hindsight an utterly idiotic notion, of course. This quickly became clear to me over the following months.

Sure, I wasn't completely unaware that this girl was... somewhat unstable. Part of me wanted to see something better in her, though. Maybe the beautiful person I could see through that murky, ugly layer really was there. Maybe not. As my every attempt to help and change her failed it soon became obvious that she was simply manipulating me, both emotionally and physically. I always had to be there to protect her, or she'd throw a tantrum. She'd try to bribe me with more sex some mornings just so that I wouldn't go to work. That was a big thing to her: the physical part. I honestly do not know what parts of her past as she told it to me were true, but I'm quite certain that sex was a big part of it, whether in the form of abuse or worse I cannot tell.

Most of those eight hellish months consisted just out of me spending a few hours at work, trying to not fall asleep, to then rush 'home' and deal with both the verbal and emotional abuse, as well as the constant demands for physical pleasure. Sleep wasn't really an option. Being woken up at night to have sex may sound like a pleasant thing, but by the time it's a regular thing and you're sorely sleep-deprived as a result, it stops being fun and gets you all the enjoyment of being trapped and tortured by a succubus. One of the worst things was the realization that I didn't love or even like this person I had entered a relationship with. I had thought I could help her become a better person - her true self - but in the end I got dragged down into the hell of what probably were her own traumas.

In retrospect, things coming to a painful crescendo at the end of those eight months and me losing all of the possessions I had left behind at the apartment as I fled from it was almost worth it just to be freed from that hell. I'm glad that my mother recognized the dire straits I was in and staged a rescue mission that night to get me to safety. The next months I spent recovering from my ordeal and trying to make sense of it all. What was clear to me was that my noble intentions had turned me into a complete fool and had gotten me nothing but loss and pain as a result.

It doesn't always have to be so traumatic, however. More recently I spent some time with this other girl, who also had her own daemons to fight with. Main difference was that she was a normal, well-adjusted person, just with some traumas sometimes poking through. About as crazy as I am myself, probably. Another big difference is that despite us parting ways in the end, it wasn't because we didn't care about each other any more, but at least from my side in the recognition that spending time together while we both struggled through our own respective traumas would not be beneficial, that we would not be helping each other that way.

The thing with traumas in a relationship is that you get the problem that you are expected to open yourself up fully to that person, which also means that if the other person is traumatized and does things which ultimately result in self-harm or which are otherwise negative, it hits you pretty hard. When you are self then also traumatized, it can be simply too much to bear. For me one of the things which is an absolute rule to me and which has kept me going for more than a decade now is to never, ever harm this body of mine. No matter how much I may hate, loathe and wish to rip this horrific body of myself apart, or wish to drown my sorrows in whatever harmful substances I can get my hands on, I will never allow myself to get past that one limit.

To me this limit, this rule is one of the few things which keep me stable and sane. It's a point of stability, which I can always focus on. Without such an emotional anchor point I'm not sure where I would be now. Probably dead for quite a few years, no doubt. This rule allows me to still feel bad about hurting myself and to desire and demand a proper outcome for this intersex curse which plagues my body. It is an expression of the absolute desire to protect this body and with it myself. Itself probably an expression of both rational thought and survival instinct. All of it is probably as close to the core of my being as one can get.

In that regard, then being in a relationship where the other, also traumatized person, does things which harm one's own body is simply too much. It's akin to one's partner cheating on you with someone else, only worse, as this hits at the very core of your convictions. It feels as if you yourself just violated that one absolute rule. Yet that then doesn't make it any easier to split ways. While I'd gladly erase any memories of the first girl I described, this more recent experience is one which still lingers a lot in my thoughts. It's very bitter-sweet, tinged with disappointment and regret. Part of you keeps insisting that it could have been made to work out, even as you know that you made the right choice. Another part of you just wants to hug this person, to forget about all the bad things.

The most painful lesson I have learned over the past years is that you cannot help the other person in a relationship, or for that matter a friend. They always have to learn how to help themselves. Others can support them in this, but there is only one person who can help oneself.


Maya

Wednesday 13 May 2015

Understanding others and emotions

Today I found myself talking again with someone who knows about my personal situation and with whom I have talked repeatedly about this issue. We didn't just talk about those things either, but throughout it felt like we shared at least some level of mutual understanding. It's not a feeling I frequently feel, but it's very... warm and fuzzy, I guess. If I let this feeling get too strong it tends to make me tear up, because it's hard to believe that such a feeling can be a real thing in this world.

Last Monday I had my first appointment with this new psychologist. Despite my GP's assumption that it'd be nice for me to speak Dutch with this psychologist, we ended up just speaking German in the end. I find my feelings on Dutch as a language to be ambiguous, still. While I can speak it without feeling all too emotional about it, I prefer to simply not speak it. The reasons for this are probably legion, including my general agonized feelings towards the Netherlands as a system and my preference to let such a horrible part of my past rest, which also means not using the language which was part of that period of my life.

While my feelings towards this psychologist are generally positive, I have since come to the conclusion that there is no way that this or any other psychologist could ever understand, let alone help me. How could they even begin to grasp the experience of living outside society's gender binary? Of being too intelligent to be accepted by others? Not to mention the horrors of rape, sexual, physical and psychological abuse, all against the background of complete uncertainty about what one's body actually is. The feeling of sheer hatred towards one's own body. What would they even help with? Help me make sense of things? It's all pretty clear to me already.

I know I said in the previous post that I'd do anything to get help, but that's exactly the point here. It's quite clear to me that at this point the medical problems I'm dealing with are the number one issue. A psychologist can not help with that. The psychological problems, from traumas to PTSD to depression, are things which all flow forth from these medical problems. Being in chronic pain virtually every day, feeling my abdomen become more and more distended while stabbing, burning and other pains as well as loss of sensation in my right leg plague my lower body. It all wears on one. Not just the pain, but also the uncertainty of what it means for one's future.

Monday is my appointment with my gynaecologist. Not the new one yet, but the same one I frequented last year. My hope is that he'll organize examinations which will tell me why my abdomen is bloated and distended to the point where it looks like I'm far along in a pregnancy when I don't strain my abdominal muscles. I also hope that these examinations will tell me why in the vaginal region it'll often feel like it's on fire, inflamed or just plagued by stabbing pains. It really upsets me to suffer these pains without the faintest clue of what might be causing these pains. Part of me still believes that they're all imaginary.

How long can one live with chronic pain, ignoring it as much as possible and lying to oneself when one states that one's life isn't so bad yet? What is the cost of such a lie?

Admitting to the truth is the first step towards self-improvement.

I am mentally much stronger than most people. The proof for this is in me getting through more than a decade of incredible abuse and neglect, despite the entirety of a country's systems being pitched against me. What I cannot help myself with is the medical help and examinations. I have done all the possible research there, but it's up to a doctor to finish things there. Which is where this 'trust' thing comes into play again. How do you know a doctor can be trusted? How can you know that a doctor speaks the truth? I still believe that some - very few - doctors can be trusted, even though I have no solid evidence for this theory.

Similarly, I have found all psychologists to be unreliable, untrustworthy, even harmful individuals - aside from one - so I have very little faith in psychologists being trustworthy people. There the cost versus benefit rule comes into play. How badly do I need a psychologist that I'd risk stumbling across more who will only further hurt, harm and traumatize me? I do not think it's worth that risk, as I cannot see how a psychologist could conceivably help me, ergo the possible benefit is zero. This is different from doctors, where a single helpful doctor can simply wipe away most of what troubles me, making the risk large, but the possible benefit very large, too.

Come Monday I'll find out whether this gynaecologist is trustworthy or not. If not, it's up to the next one. I have a reference for one who is supposedly pretty good. And then there's this promised one who specializes in intersex, yet who seems to be incredibly hard to get an appointment with.

Through all of this I do however realize very strongly how much the lack of a functional emotional side plagues me. At the age of 21 I still had effectively the emotional age of an 8-year old, due to the uncertainties about my body and self - as well as possible sexual abuse - stunting my emotional growth, making me skip emotional puberty. In my early twenties, I still found it to be weird to have people refer to me as an adult, as my self-image was still that of a child. Then, the next decade saw 8-year old emotional me get put through getting raped, suffering horrific psychological, physical and sexual abuse, being driven to a suicide attempt, repeatedly becoming homeless and losing one's possessions, and being betrayed over and over by those who were supposed to be there to help.

If a regular 8-year old grew into an 18-year old adult while suffering through similar experiences, there'd be little doubt that a lot of counselling would be required, if they got through it at all. I think what saved me so far is my intellect. Being able to reason my way through situations, to understand emotions through logic and experiences is what allows me to thrive in social situations and even get a measure of enjoyment out of it. Yet through this all I'm painfully aware of the reality of my emotional side. It's akin to the bombed out shell of a once thriving city. There are still patches left which remind one of what once was, but most of what one sees and experiences are the raw, gaping wounds.

I have said it before and I will keep saying it, probably for a very long time: I have no hope that I'll ever partake in 'normal' human life. I do not foresee myself building up traditional relations, whether just friends or something more. Decades of harsh experiences have made this abundantly clear. It's best to simply accept it and leave it at that. One can keep waiting and hoping for something better, something more pleasant, something which will end the painful aching of the many bleeding holes in one's heart, yet this is not to one's benefit. One has to keep on living, even if it means forever numbing one's heart to the realization that life can also not hurt.

Maybe in the real world the ruins of a city will carry many flowers, but in the world of humans no such certainties exist. Allowing one's heart to flourish like a desert flower at the mere hint of life-bringing water only risks pain and death. I wish I didn't just write all of that, but with decades of brutal experience behind me I cannot conclude any different. This is a world filled with many people, many of whom are each other's enemies, others who do not care about each other. Whether someone is truly a friend is almost impossible to determine. This makes it all such a cruel game.

And the worst part? You know you really, really want to trust people and call them friends. We are only human, after all.

Here is to Monday's gynaecologist appointment which will be another dice roll in the game of humanity. Just a giant experiment, with us all running around heedlessly in a gigantic maze, bludgeoning each other over the head for no perceivable gain. I don't even know, nor would I be be capable of grasping why a gynaecologist would not simply do his or her job, but instead brush patients off, or outright lie to them.

I'm just feeling so very confused, exhausted and frustrated.


Maya

Saturday 9 May 2015

Trying this 'psychologist' thing again

After recently contacting my GP about assistance with my intersex condition and its apparently increasing list of symptoms, she not only found a new gynaecologist for me, but also offered me the opportunity to speak with a new psychologist. This latter mostly because of me having indicated that I suffer from regular bouts of suicidal (and regular) depression and with her pre-existing knowledge of my PTSD. Monday will be my first appointment with this new psychologist.

Anyone who has followed me for a while is probably quite aware of my negative - where not plain traumatic - experiences with psychologists in the past. Beyond one psychotherapist in the Netherlands, every single psychologist, psychiatrist and related I came into contact with either tried to convince me that I had to be transgender, that I was merely imagining my intersex condition, or that I was simply 'crazy', to put it into plain English. Things don't get fun yet until a psychologist tries to pass off your intersex condition as just you being delusional and merely wanting to see your own body as being female, even after her assistant's first commentary upon seeing you is: "But she really looks like a girl!".

Suffice it to say that if my scepticism regarding psychologists increased just a teensy bit more, it'd probably jump plain off any imaginable scale. That I nevertheless have agreed to this appointment with a psychologist has many reasons. The first, basic and major, point is simply that I need help with my traumas, including my PTSD. It's simply not possible to live anything resembling a normal life in between the periods of fear, terror, traumatic recollections, crying, paranoia, dissociation and plain lethargy. Still trying to pass myself off as a normal, properly functioning adult person in daily life is a terrible lie which isn't helping me either.

A second point is also the reason why I keep going to gynaecologists, even though my distrust towards physicians is already off the scale: as I am typing this I can feel a sharp, burning pain in my lower-right abdomen and a dull, burning pain in what I'd presume to be the vaginal region, symptoms I am quite certain are developing medical complications as a result of my intersex condition. In short: I need to find physicians who are willing and capable of helping me get through this problem. I need every bit of help I can get and cannot let traumas from my past guide me, as I wrote in an earlier post as well.

So, what to talk about with this psychologist with Monday's appointment? Figuring out whether she can help me at all is probably the first point, as my situation cannot possibly be easy to comprehend for anyone. As someone who is intimately familiar with said situation, I can honestly say that even to me it's still bloody confusing once you get past the pretty obvious medical points.

Much of what bothers me is simply due to traumas, much of it inflicted by physicians and psychologists over a decade, but another significant part is simply trauma from having a body which I cannot and most likely never will understand. Compared to the physical rape and sexual abuse I have suffered, this trauma is still much worse. The way I see it, that many people got their way with me is largely because of this uncertainty, of having a body and accompanying self-image that's just a blank canvas, ready for anyone to fill in. I would definitely say that it was what made me so vulnerable and easy to manipulate.

Not having a self-image or clue what I was led to this abuse, which led to me developing this incredible hatred towards anything sexuality-related, further helped by the abuse suffered at the hands of physicians and the like. I have undressed for and been fondled by more physicians than I have had sexual partners in my life so far, if that gives any indication. I really hope that there'll be a day when I won't have to feel this sickening, simmering hatred towards anything sexuality-related, including (heterosexual) couples. It's not me which hates it all, but a part of myself that I cannot reach or comprehend.

Similarly for my hatred towards my own body, which too appears to be a result of not knowing what the hell this body is, but finding myself more than able to blame having been born with this disfigured body for everything bad that has happened to me in my life so far. Even if Dutch physicians still claim that I am not intersex while other physicians disagree, I know that I have an intersex body and that I hate this fact more than anything in life.

Monday's appointment is going to be an interesting one, that's for sure...


Maya

Friday 8 May 2015

Welcome to migraine central

Waking up this morning had me feeling weak like a newborn kitten, with my lower abdomen pulsating and cramping with exquisite pain. That was before the headache started, a headache which would soon develop into a mild migraine. After calling in sick at work, I then entertained myself the rest of the day with forcing myself to eat something so that I could take painkillers, and distract myself sufficiently with reading a book in a room with dimmed light (light-sensitive migraines are so much fun) so that I could sleep. As I'm typing this I had another three-hour nap earlier. Total caloric intake today consists out of some bread, a pizza and a few bits of chocolate. Also lots of water and paracetamol tablets. Yum.

When I say 'mild migraine', I'm putting it next to what I consider to be a full-blown migraine, such as those I suffered a lot going through puberty. Those had the full package deal, with the white-greyish specks in one's peripheral vision which keep multiplying over the next half hour or so into a proper aura, to then vanish and be replaced by the hammering of a rusty, blunt icepick in the part of one's brain just behind the eyes until it felt like your skull is falling apart into small fragments. At that point everything hurts: from light to touch to temperature to the mere awareness of being alive. In that regard merely feeling like something is trying to claw its way out of your skull via your eyes is pretty darn mild.

For me migraines appear to be mostly stress-induced, though thanks to the incompetence of Dutch physicians who overdosed me on hormones on occasion, I also discovered how easily getting too much oestrogen into one's system can trigger full migraines, as well as motion sickness and everything. During my High School period I didn't have a fun time, between getting bullied by virtually everyone for being 'weird' and trying to somehow squeeze my cursed-with-giftedness self into the unyielding shape of the education system. I'd often get the tell-tale signs of an impending migraine attack as I was standing there, surrounded by classmates between classes while they were making insensitive comments and being all suggestive. I remember reporting to the principal's office frequently to get permission to go home, whether by bicycle or by having my mother pick me up with the car.

I thank the heavens that I haven't had one of those aura-based migraine attacks in a while, with the last one being about two years ago. More recently, as in the last two weekends and today at least I have had these mild migraine attacks, however. Today's attack seemed to be related to the increased abdominal pain, as well as a sudden spike in stress at work. The attacks of the last weekends are probably similar, though those two also had some more neurological implications, including blurry vision with the right side being most affected.

The past weeks I have been noticing a lot of cognitive issues, with me suddenly having trouble remembering words, typing, and stumbling over words I have pronounced many times before without issues. Also general issues with motor functions, with both fine and general motor functions negatively affected. This all seems typical of an excess of stress, which is something I have plenty of, thanks to my current medical problems and their pains, apprehension about upcoming doctor appointments, working 10-hour days at work, and the book I'm still writing with my editor getting very antsy because it's taking so long.

Stress-reduction seems to be the obvious solution here. Unfortunately there doesn't appear to be any conceivable way to make that happen within the next month or two. Seems like I'll be enjoying a few more mild or even full migraines the coming time. Can't bloody wait.


Maya

Saturday 2 May 2015

Deaden one's heart in order to survive

Over the past decades I have learned the valuable lesson that one should most definitely at no point trust another human being beyond oneself. And that even putting trust in oneself can be a very poor idea. One can disappoint oneself, though at least there one has recourse to prevent or deal with such things, as one can learn to detect the subtle ways of betrayal of one's own mind. Not so with other humans.

It's been said many times before that the only person you can truly know is oneself. Share hopes and dreams, or put faith in others and you will get hurt. Being alone hurts, too, but it is a manageable pain next to the agony which others can and will inflict upon you. Suffer alone and at least you know that you can always rely on yourself.

Whether any of the above is actually true is something I do not know with absolute certainty, though there is a part of my mind which insists that it is the absolute, undeniable truth. This while another part of my mind aches for human companionship, maybe even more, but never manages to find solid footing as the former part of my mind keeps getting proven right over and over again. Completely distrusting others isn't paranoia if it's based on many years of bitter experiences.

It is much the same with doctors, psychologists and similar. Why would I trust a doctor after everything they have put me through? What conceivable reason could I have to ever believe again that doctors are there to help people instead of just to torment and murder them? How could I?

As appointments with multiple gynaecologists and a psychologist loom up in front of me I am confronted in a most agonizing way with this struggle between hope and fatalism. Most of my mind insists that each and every one of these people I'll be meeting will hurt me significantly, adding to the trauma and possibly break me completely this time. A small part of my mind still holds the hope that this time will be different. That all of my questions will be answered and all medical problems resolved.

No matter how fatalistic I feel about physicians, however, I cannot deny the simple truth that without interference I may already find myself in a terrible situation within the next months if not weeks as the painful symptoms related to my intersex condition have worsened to the point where I cannot help but wonder whether this is how it feels to be dying. With my lower abdomen just a mass of numb, burning, cramping pain and my right leg having gone almost completely numb twice just the last week already, not to mention the frequent bouts of migraine over the past weeks, I can only fondly remember last year when the pain was relatively mild and limited to just one week but otherwise quite insignificant.

The thought of actually dying frightens me enough to mercilessly kill off any emotions and feelings I may have in my mind and heart. Nothing matters at this point beyond simple survival. That means getting to these doctors as soon as conceivably possible in the hope that they'll find out what's wrong and interfere before anything can turn fatal, my feelings about doctors be damned. If these doctors screw up again... at least it won't be my fault, and I can die in the bitter confirmation that one truly cannot rely on others.

If it does turn out fine...


Maya

Be wary of us sexual abuse victims

Over the past decade I have suffered raped and sexual abuse in various forms by both men and women, by regular people and so-called healthcare personnel including doctors. I have lost myself repeatedly because of previous abuse and allowed others to take advantage of me in ways which still fill me with horror and loathing at the mere recollection. There is also circumstantial evidence that I - just like a cousin of mine - was sexually abused as a young child, though the facts about this are lost in the fogs of time.

All of this has served to make me into the person I am today: someone who despises and loathes sexuality more than anything. Unable to fit something so completely evil and negative into my life, I take great care to avoid it as the mere mentioning of an aspect of it can trigger crippling recollections of events, feelings and traumas which will cause me incredible emotional pain.

Sometimes I dare to utter in public that I'd appreciate it if people were a bit more careful with spilling details about their relationships, sex life and pornography preferences, just in case someone like us is nearby: someone who is still struggling through the consequences of such horrific trauma.

I'm a horrible person for having the nerve to deny others unfettered access to details about anyone's sex life and preferences. I'm playing the victim as I would like others to consider people like us before mentioning something which may potentially trigger a traumatic memory. I'm being a big baby as I try to deny something that's intrinsically part of being human. Others are completely justified in telling me to crawl off somewhere deep and dark where their lascivious behaviour cannot reach me.

People like us do not deserve any compassion, sympathy or understanding. All the suffering we underwent was simply because we were born sinful and undeserving of humane treatment. Every tortured memory and traumatic recollection at a particular sight, touch or smell is just to remind us that we are sinful creatures, only born to lead others astray.

At times like these I simply do not understand anything any more.


Maya