Sunday 28 February 2010

Searing Pain

The past few days I have been feeling as though I'm literally being torn into two separate parts, with each going its own way. Thanks to the energy I gain from the energy drinks my mental resistance is much higher, about on the level it was 5-6 years ago, I'd estimate. Back then I also was still withdrawn into myself, with my emotional side being pretty much non-functional. Nowadays my emotional side has grown and evolved since that time, yet the most I feel from it is this searing, at times almost unbearable pain. It's as though I hear a thousand voices all talking and screaming and yelling simultaneously with hundreds of suggestions, many involving violence against myself or others, or involving giving up, to quit eating and drinking, to just leave the house and wander around until... I don't know what.

What I have also noticed is that physical pain really worsens this sensation. For example when I discovered today at the pool that my injured elbow hasn't healed yet (injured it last week at the pool), I began to feel really terrible and almost depressed. When I suffered severe abdominal cramps a few nights ago some part of me convinced myself that I was dying and that it was okay because nothing matters any more anyway. These feelings pass after a good night's sleep or nap, or when I'm doing or talking to someone interesting.

What has changed since I began to take these energy drinks is that for months my emotional side, or whatever you want to call this ball of frustration inside me, had been controlling almost every single conscious thought. Now it no longer does this. I can fight and control it. Only when I consciously allow it to express itself does something happen. The past few days I have allowed myself to cry and express my frustrations. I still think that it's scary how extreme these frustrations are. They are truly something which could destroy me if I'm not careful, or if my situation worsens some more due to external influences.

Rationally I'm completely convinced that what the UMCG hospital is doing right now is utterly wrong and counterproductive. What my emotional side would benefit from the most is a quick series of exhaustive tests, acknowledgment on a medical, social and political level of who and what I am. Instead it's nearly a year since the UMCG started looking at my case. It'll be another year before they may possibly have finished their urological tests, if they are going to do any at all. This all only serves to remind me that my case isn't relevant, that nobody who matters understands what I'm going through and that they could and would harm me beyond repair while remaining blissfully unaware of the fact that they have just destroyed a life.

On which note, the UMCG has suggested multiple times by multiple people that they could 'help' me figure out how to deal with the 'facts' of my case and how to base my life around it. To this I can only say that it makes me laugh in despair to think that they seem to live in the illusion that for someone like me, who has virtually no facts about her (his? Its?) body and who doesn't even exist officially (identity-wise, medical acknowledgment), can have anything to base anything around. It's more like trying to base one's life around a black hole. There is absolutely nothing inside of me, no self-image, no notion of an identity, no place in society, no feeling of belonging. Only the curse of my giftedness and the mental powers which come with it. I can honestly see things as they are now only end in either the destruction of myself, or that of my emotional side. It's like a game of chicken, only with my life as the stakes.

Next Friday my article in 'De Telegraaf' will be published. It definitely increases the anxiety I'm feeling. I notice how I measure lots of things like doing groceries and going to the swimming pool in 'before' and 'after' its publication. If nothing happens afterwards, though, I can't imagine the bitterness I'd be feeling.

I'm so afraid...


Maya

Wednesday 24 February 2010

Energizing The Future

It's strange how things go, and I mean really strange. One moment you will think that nothing can possibly improve the situation you're in, the next moment something happens which turns that notion completely upside-down and possibly inside-out as well. Such is the case with my mental state and its effect on my physical condition which I loudly complained about in my last post and no doubt many times before that.

There's such a thing as a downwards spiral, a system of reinforcing negative impulses, which in my case consisted out of starting out with very little to build upon, being faced with a quite monumental task of constructing something out of nothing, coupled with an immense uncertainty about what I am and what my place in society, nay, in this world might be. With the deck stacked pretty much fully against me I nevertheless was inspired to change matters for the better.

Then things came crashing down. My dreams of finding my place in this world got crushed by the ignorance and prejudice which exists in the medical and political systems. My dreams of establishing a successful software company, start even more involved projects and change the world got a wake-up call too and came to face the harsh reality of deadlines, delays, project management, resources and heavens know what else. Trying to be anything but a good little grey, irrelevant cog in the gigantic machine we call 'humanity' is like kicking and screaming and raging against the uncaring walls of a prison cell. Even those we call 'celebrities' generally are just that, happy little cogs we can use for inspiration to become even more happy little cogs.

This all wasn't good enough for me. I could not adapt to such a dreary, hopeless and crushing existence, or lack thereof. I wanted to make a difference, to live instead of merely exist. And yet with everything I did and decided I found that I drifted further away from my goals. With my body, if I had just shut up and pretended to be a regular boy I wouldn't still be in the middle of this war with so many bigots, ignorant, prejudiced and uncaring people, with far too many casualties on my side already.

If I had just done a regular study and pushed away my giftedness, I could have a grey, dreary job like all those other good little drones out there. I could have a grey, dreary relationship with a good little cog. And I would be completely, utterly unhappy.

Yet I persisted in my rebellion. I was going to see my dreams come true, even if I had to perish in the line of duty. Yet the strain of this ongoing war and the many lost battles had taken their toll. I was emotionally shattered, rationally strained and above all drained to the point where the stress was beginning to show its effects on my body, a clear sign that without much needed reinforcements I would be losing this war of attrition.

Feeling drained means having little motivation, with even small tasks feeling like too much of a burden to take on. A passive response seems much easier and is very easy, far too easily given in to. With the lack of motivation little gets accomplished. When consequently reflecting on one's accomplishments one gets more despirited, which leads to even less energy and motivation. Thus even less gets accomplished and one gets even more despirited until at some point there's only rock bottom and the curtains fall.

That's the situation I was, and still somewhat am in. A small miracle seems to have occurred, however, resulting from a sudden wave of inspiration. I do not remember what gave me the idea, but last Saturday I was standing there in the supermarket, looking for those fabled energy drinks and taking a few to sample them. I wouldn't be disappointed by their effects.

I have no idea how these drinks work for other people, but in my case it seems to have had an almost miraculous effect. The feeling of being exhausted during the day has vanished, I find it much easier to breathe, I don't seem to get this tight sensation on my chest any more, I feel energetic from the moment I wake up until I go to bed and generally just feel nearly normal. I also have a far higher resistance against my PTSD triggers, as I experienced a few hours ago.

It's as though the mental barrier I have put up between the stable and unstable (frustrated) parts of my psyche has been heavily reinforced, with the latter having almost no grasp on the former any more. The past few days I have been working on the new website's content management system almost continuously, something which had been impossible for me for months, if not years already.

At this point I'm drinking 250 ml of these energy drinks a day, or basically one can. I feel like I have been given a second chance. And not a moment too soon.

I pray that now I can successfully finish the ECD game project. From the looks of things we'll have at least one more month of development time, assuming the 3D artist we got working for us at the moment comes through on this promise of churning out models, and the level designers bother to respond. Heaven knowns we can still use more 3D artists familiar with Maya, 3D Studio Max and kin, as well as level designers, sound artists (BGM, SFX) and who knows what else. I'd be more than happy to finish the new website as well.

Today I finished most of the network code which facilitates the synchronization between the testing (administration) and production sides of the new Nyanko CMS. Tomorrow I won't get to do much work as I'll be going with Pieter to some exposition featuring a lot of different subjects. Supposedly it's aimed at families, but a number of companies involved in home organs are also present, which is the primary reason why Pieter is going there.

I have considered staying at home and working instead, but it may be a good thing for me to get out a bit, meet people and such. Which reminds me this thought which keeps flashing through my mind; how things are going to change after that article on me gets published in the country's largest newspaper next week, and around a million people will suddenly know about me. How will things change if they start to recognize me? To put it plainly, will I hear people whispering behind my back, approach me on the street, see people staring at my nether parts when I'm at the swimming pool?

My media appearances can really turn my life as it is now upside-down. How do I feel about shedding these worn-out, familiar clothes and trying on something new? What if TV channels and magazines suddenly approach me, even international and foreign ones, and I really become a kind of spokesperson for people like me, this large group of people who right now don't really belong anywhere and don't have a voice. What if the fame will skyrocket me out of this current existence of living on welfare and I'll actually be able to live like a real human being? Frankly I feel all giddy and stuff inside at the mere thought of this.

I'm more than thrilled at the prospect of meeting new challenges, of discovering more about myself and of seeing how far those new wings might take me towards my dreams.

In the mean time, however, the best I have got are the pics in my site's gallery of me prancing around in a dress while wearing cat ears. I consider that something of a personal victory in itself already :)


Maya

Saturday 20 February 2010

Reversal Of Hope

Yesterday I heard from Pieter that he had been communicating with professor Weijmar Schultz of the UMCG regarding my case. Whether it was just a really unfortunate wording used in his last email to me or something else, Pieter informed me that Weijmar Schultz had said that they're willing to further look at and perform tests in my case. The confusing part for me is that they're claiming this can only be done within the protocol for transsexuals, yet I'm very familiar with this protocol and I fail to see the relevance. Anything they'd have to do for me would fall outside that protocol.

This protocol for transsexuals basically involves months of talks with psychologists to confirm whether this person truly wishes to swap genders, then the person is allowed to pretend to be that other gender in real life, the so-called real-life test. If the person still insists on swapping gender and that person is healthy, the hormone therapy is started and after a few years if things went right there's the option of gender reassignment surgery.

Now, the AMC hospital has already concluded that I'm not transsexual, so those talks got swapped by the UMCG for talks with a psychologist regarding how to handle my situation, specifically emotionally. Fair enough. Yet they are also going to offer urological tests and such in order to see whether they can find anything unusual about my body, including the low testosterone production and 'feminine' sexual sensitivity. At this point what they said they want to do with me doesn't even resemble the aforementioned protocol for transsexuals. So why even mention it? Not even for the law could they pretend it's the same.

What also disturbs me is that Weijmar Schultz in his last email to me literally says: "Important for you to know is that we only perform treatment when it involves transsexuality." ("Belangrijk voor jou is om te weten dat wij slechts behandelen als er sprake is van transseksualiteit."). I mean, what the hell?

In short, knowing that they're not done with me at the UMCG doesn't give me any hope. I have long since passed the point where I can look forward to the promise of help as my experience is that it's never what I expect. For all I know the UMCG will turn out to be even worse than the VUMC hospital in this case. Only if they prove me wrong on this will I maybe begin to believe in hope again.

In general I have come to realize that I can't handle the realities of society and social interactions very well, and even more poorly as of late. This has forced me to abandon existing and hopes on future involvement with others except on a purely rational and 'childish' level. For now at least. It has become too hard for me to face the current reality about my body and how poorly it fits in with everything and everyone around me without there being anything I can do to change it. Unless I want to literally burn myself out with stress this is the only way I can protect myself for now.

If I were religious I'd be praying with fervor that the article to be published in number 9 of the 'de Telegraaf' newspaper will bring about some miraculous change. I'm not sure I can last another year like the last one, with virtually no change, plenty of disappointments and my increasingly worsening physical condition. It has been a scientific fact for a while now that stress can reduce one's lifespan and even outright kill individuals through secondary effects. I attempt to stay as calm as possible, yet I do worry that the past and upcoming experiences I have gone through may indeed already have done their damage or will worsen it.

A few nights ago I woke up during the night with my chest hurting quite painfully, to then radiate towards my left arm. After a few minutes the pain began to subside, but it was a frightening experience indeed. I have days when all I can do is bear this dull pain inside my head, sometimes accompanied by a sharp, stabbing headache, with frequent episodes where I nearly begin to hyperventilate. Breathing exercises and such only seem to do so much at this point.

I really hope things will turn out well, really soon...


Maya

Friday 12 February 2010

The Path Which May Exist

It's at times like this that I'm not even really sure what the path is I am following, or whether there really is a path. I don't even know where it might lead if it does exist. All I see around me is this barren wasteland with only the memory of life appearing in glimpses around me. Glimpses I may very well just imagine as I put one foot in front of the other, clouds of dust rising with each footstep. I vaguely remember the path behind me, even if my footsteps kilometers behind me already got covered up by dust storms. In front of me and beneath my feet I can only see the same red-brown coloured dust which covers everything as far as I can see. There is no distinct path I'm following, just a feeling that this is the direction to head towards.

I'm alive. That's the only sensation I'm most strongly aware of. Beyond that a desire to change my current situation, to understand, to learn, to gain power. To affect my own fate. Yet I also feel torn between two strong desires, two strong wills, both attempting to steer me into a different direction. I wish I could unite both. I wish I wouldn't have to rid myself of one of them lest they literally destroy me.

My desire to learn about and understand my body has failed. Today I received a communication from the UMCG hospital which confirmed my worst fears; they either can or don't want to offer any further treatment unless I submit myself to the protocol set up for transsexuals. Unless I manage to classify as a transsexual there is nothing they will do. It doesn't matter that I'm intersexual. It doesn't matter that I'm a fellow human being. To the laws and regulations currently in place intersexual people don't exist, ergo I don't exist in the system and nothing can be done for me unless I pretend to be something I'm not. Something I loathe.

Things are going great work-wise at the moment. Thanks to my topic at Hardforum.com we got joined by a 3D artist who so far appears to be shaping up to be a tremendous deal of help. He has worked on other projects before, including commercial ones and seems to know how things work. I have high hopes that the Even Cats Dream game can be launched next month.

Yet simultaneously I feel that my emotional side is rapidly degrading at the moment. It feels that it has been betrayed, abandoned and desperately seeks a way out, or some way to justify its existence. There doesn't appear to be any reason for it to exist, as there is no self-image, no deep relationships to maintain, no feelings to share with others who can understand them. Only this hope that things would turn out fine some day. Instead it feels that all options have been nearly exhausted at this point and expects nothing but further disappointments.

I have tried to contact the Mayo clinic in the US to ask for any help with this issue, but unless I'm willing to pay up and visit them in person, they won't even look at my case. Unless some miracle happens after the publication of my article in the 'De Telegraaf' newspaper here, I fear that together with my emotional endurance my options will be exhausted as well.

There's nothing more I expect from the UMCG. I do not wish to continue to beg them for scraps. I will defy any attempts to be classified or to make me pretend to be a filthy transsexual sub-human piece of ****, as I know very well what I am not. I still have pride, I still have this burning desire to learn the truth and this anger I feel inside at the injustice I have been served the past years will keep me going even if I should have long since fallen apart inside, as it has kept me going for the past years.

What is next? I honestly don't know, but somewhere, somehow I'll find the path.


Maya

Monday 8 February 2010

Cause Of Frustration: Medical

A short while ago I got the MRI images from the Onze Lieve Vrouwe Gasthuis (OLVG) hospital here in Amsterdam which were made last December. Once again when I look at the images myself I only feel the same questions and frustrations. To summarize, here is a telling image from the series of side views:


According to the OLVG report no female reproductive organs were visible, yet a prostate was visible. Yet again the same question is raised of what the structure marked 'Vagina?' in the image is. Looking at MRI images with the same perspective of regular males no such structure can be seen. At the UMCG hospital the radiologist indicated that this black line was merely air inside the rectum, yet this image clearly shows that the black line is outside the rectum wall and thus at most can be air outside the rectum, which would be worrying as normally there's no air inbetween organs. So far the radiologist of the UMCG hasn't provided any MRI images of a similar phenomenon as he had promised during our last appointment.

When it comes to the prostate I can believe based on this image and the others that there is a prostate present, although I do wonder why both German clinics indicated that they didn't see one. It is clear to me, though, that if a prostate is visible on my MRI images it isn't as neatly visible as normally. The German scan was pretty blurry after all. This OLVG scan is the sharpest one so far thanks to the use of an additional RF probe.

So what it comes down to is what this mystery tube-like structure is. So far I have heard Germany say it's a vagina, with Dutch hospitals saying that there's nothing special visible (while this appears to be an unusual thing to see on an MRI scan) or that it's merely the rectum wall/air inside the rectum (both by UMCG). I honestly can't say. All I know is that I feel a 'hole' down where a woman would have a vagina, which becomes more 'loose' when I become sexually excited, and that others have confirmed this as well.

To be honest I feel completely miserable having all those contradictory facts and statements piled up in front of me with no one seemingly interested in telling me what in heavens name is really there. Do I have to cut myself open or so to take a look? I do know that I can not keep living without knowing what's going on. It takes too much energy.

Worst are the many flashbacks I keep experiencing, of which I had an especially bad case yesterday. I woke up feeling alright, then while at the swimming pool I found that I felt very agitated, even having to suppress the urge to scratch or otherwise hurt Pieter when he repeatedly splashed some water at me even after I had indicated I didn't like it. It was the first time we left the pool before 12 PM since we started swimming there.

Then during the day I kept feeling burned out emotionally. The past few days there's also been pressure on me to look at finding my own place, which combined with my current uncertain financial situation feels more like jumping into deep water, unaware of any rocks or strong currents which may lie beneath its surface. It feels like a step too far at this point.

Last night I couldn't sleep at all until 2.30 PM. Every time while reading my book that I began to feel sleepy and turned off the light to try to sleep I'd notice my thoughts drifting off to unpleasant topics, with many flashbacks mixed in, mostly related to the women I have been intimate with. It filled me with so much disgust and frustration and god knows what else that to prevent myself from thinking even darker thoughts I had no choice but to turn the light back on and grab my book again. At least I managed to finish the book, but today while I'm okay rationally, my emotional side feels about as refreshed as a smashed orange which has been lying in the burning sun for a few days. At times I get this pressure on my chest, or a stabbing headache which lasts for minutes or some other random pain. It's really quite annoying.

To put something positive into this post as well, I got permission to post a request for help with Nyanko's current game (Even Cats Dream) on Hardforum.com (in the subscription section). So far a few people willing to design levels have reported and I'm hoping that a 3D artist or two will join too. With some luck the game could be finished well on time.


Maya

Thursday 4 February 2010

Estranged

Yesterday I spent nary an hour at home due to a series of appointments. First was my regular Wednesday torture hour, taking up most of the morning including an hour of cycling to and from the beauty salon. After returning home I just had enough time for lunch and a quick shower before I had to leave for the next thing, assembling a PC for a friend who I had helped previously to pick the right components.

Assembling the PC itself took little over an hour, and aside from the usual small glitches it worked right away. He had picked Windows 7 as the operating system, which was my first time seeing it install. The most annoying thing in my opinion about this installation was the absolute lack of progress indicators during the process. With previous Windows versions the installer shows you what it is doing, a time indication (which is more for show, but still) and general more information about which files it's copying to the HDD and everything.

The Windows 7 installer seemed to enjoy showing mostly pretty full-screen images with further a lack of information, making this friend and me wonder whether it hadn't just crashed. Maybe other versions of Windows 7 aren't like this (we installed Home Premium), but I thought it was pretty annoying. Bright side was that Windows 7 managed to detect and install drivers for all hardware devices, which was a nice surprise compared to Windows 2000 and XP installations.

I left behind a rather happy friend with shiny new toys. He went from a Pentium-M-based Dell laptop with 17" screen to an AMD Athlon II X3-based desktop system with an nVidia GTS250 videocard and 22" LCD screen. His laptop also needs some fixing, as its two fans have issues, with one making noises and the other not moving at all. Will probably look at that later. I hope it doesn't need spare parts, as that'd probably be either a pain or expensive. Or both.

Pieter is kind of happy today as well, as he gets to pick up his car later today. Last Monday his car had to be dragged off to the workshop because it couldn't be started any more, with apparently a device regulating the amount of gasoline mixed with the air which had previously already been replaced on the fritz. Supposedly this replacement unit (used version) came from another model Volvo and didn't regulate things properly, leading to a far too rich mixture which drowned the engine with fuel. When the engine did run (with higher outside temperatures), fuel usage increased from 1 liter per 10 kilometer to just 1 on 7. Let's hope it works again now with a new unit. I also hope Pieter survives seeing the repair bill. It's going to be a tough one :)

As I wrote on my Twitter stream already, I have been doing a fair amount of work lately. It seems that concentrating on my work is much easier now. Conversely my ability and patience to concentrate on other matters has decreased noticeably. All of my PTSD triggers have become a lot more sensitive, I absolutely abhor the mere thought of relationships and sexuality and will react very sharply if exposed to it.

Yesterday I talked to the assistant of the urologist, Mr Meijer, who was going to contact the UMCG and discuss the matters I had discussed with him on December 21st. I had also sent an email on January 11th to the UMCG, specifically to professor Weijmar Schultz discussing the same matters to which I received the enthusiastic response "I'll look into it!".

As it turned out, from what I understand Meijer did send a mail to the UMCG but received the response that they couldn't send him any information because some tests on me were still in progress. I'm not aware of any tests they're still performing there, so it seems to be a major glitch on the side of the UMCG. I sent Weijmar Schultz an email earlier informing him of this.

I also pointed out my displeasure with how long everything else is taking. Weijmar Schultz was supposed to arrange a letter explaining my situation last year, the radiologist was supposed to send me comparable pictures, the urological matters should have been discussed by now and something decided, and the issue of my castration was also something Weijmar Schultz indicated would be discussed at the first meeting, many weeks ago now.

Add to this the apparent lack of interest from the side of the Avro and SBS TV stations from whom I haven't heard anything for weeks now, and I'm feeling seriously estranged from pretty much everything and everyone. It's as though my existence matters less and less, like it's perfectly normal for me to suffer like this and I am merely whining.

If nobody cares about me, why should I care about them? If this world doesn't want me, then I don't want it. Back when I was withdrawn into myself I ignored the world and the world ignored me. After I got out of that and was ready to embrace the world, I found that it still ignored or merely laughed at me.

It's a cold, insensitive place. Beyond intellectual pursuits I can think of absolutely no reason why I'd want to stay here a millisecond longer. Take my rational mind out of the equation and I'll commit suicide before anyone can say 'Live with it'.


Maya