Sunday, 28 June 2015

Exploring traumas: sexuality

The most interesting yet also the most dangerous property of traumas is how hard they can be to detect and narrow down. Often it's just an oddity in one's behaviour, or strange thoughts. It's generally not until the right trigger is encountered that the trauma fully comes to the foreground. It's also only through such triggers that one can begin to piece together the full extent of a trauma. One of the most severe types of traumas are probably those related to sexuality.

For myself it's in hindsight not hard to see how such a trauma managed to dig its roots deep into my mind. From the circumstantial evidence that I was sexually abused as a young child, to the degrading relationship between my parents until my father finally ran off with the woman he had been cheating on my mother with, to the advantage guys have taken of my fragile emotional state during the first years after discovering the truth about my intersex condition.

Earlier today I had a sudden emotional breakdown which surprised me. All of it centred around the question 'why did they do that to me?'. I never wanted to be sexually abused. I never wanted to be raped. I never wanted to say 'yes' to those guys doing... things to my body. I never felt I had the right to say 'no'. Yet with every event I could feel another part of myself, of my sense of self-worth, be cut away and discarded. Yet I didn't feel like I had the right to stop it.

I never wanted to say 'yes' to those girls, either. I never really knew why it all happened. Maybe I just went along with it all just to fill this gaping hole where my emotional side was supposed to go. Maybe I was afraid of what would happen if I said 'no'. Maybe I was just lonely.

Today's breakthrough seems to be that I felt simply angry at all of them. At all of those who neglected my feelings and just used me. It's much like when I was finally able to stop blaming myself for having been raped and allowed myself to simply be angry at the pile of excrement which felt that he had the right to use and command me in such a manner.

Maybe even more importantly is that it showed me a glimpse of the complex and intricate wiring underlying my hatred for anything related to sexuality not to mention also anything male. It's a complex mesh of betrayal, trust, loneliness, deception, longing, fear, pain and many more contradicting emotions. Even if I receive that reconstructive surgery this year, I'm not sure how long it'll take me to explore this trauma's web fully and begin to disassemble it.

The betrayal, deception and harm inflicted upon me by physicians merely adds to this existing trauma. It meshes the traumas related to sexuality with those related to my body as a whole into a new... meta-trauma in which my body itself and anything related to it is the trauma, the trigger and the key to destroying the trauma.

At any rate what I'm learning is just how far down the rabbit hole goes. I hope that at least this way I can learn to better understand my own behaviour and urges, to ensure that at the very least I won't be making the same mistakes again, and allow myself to have just that little bit more self-esteem that I seem to need to actually clearly state my feelings to others and to not simply give into the yearning for companionship that loneliness evokes in a social creature.

It's okay to be alone and lonely. It's okay to go a life without feeling loved by another. As long as you can love and respect yourself.


Friday, 26 June 2015

More examinations and hunting down a surgeon

Yesterday was my appointment with my gynaecologist, in order to discuss the MRI scan results and how to proceed from there. Most of the time I was there at the gynaecologist's office was actually spent waiting. I was the last patient before they closed for lunch, and as usual they were running out of time. My appointment was at 11.45, but I had to wait until 12.30. All rather annoying when you're just sitting there, waiting for an appointment which can hardly be called pleasant.

At any rate, the gynaecologist told me that he had further results in from the blood tests. Pregnancy hormone, tumour markers, etc. looked normal. No further blood tests are thus possible at this point. This also concludes what my gynaecologist can do for me. He'll refer me back to my family doctor, with the advice to have me examined by other specialists, specifically for pinched nerves in my spine as possible cause for the pains, as well as a colonoscopy for the same reason.

Naturally, none of these could conceivably explain the appearance of linea nigra or the swelling of my breasts. The latter might be a possible explanation for the abdominal distension, but without any clear digestive troubles or symptoms this too seems relatively far-fetched. Yet I'll go along with it, I guess, because if both results come back clean then those avenues of research can be abandoned at least.

The only really promising thing is that my gynaecologist also went along with the reconstructive surgery approach. This also because I could confirm to him based upon the recent MRI scans that yes, I do in fact have a vagina. Issue here is to find a surgeon capable of such a reconstructive surgery related to the female genitals. As the past years have shown me, such a thing is most definitely not easily accomplished. My gynaecologist said that he'd contact some people to maybe find a surgeon, but I'm afraid that this is the point where the current progress will end once again. The other examinations will come back without results, no surgeon can be found or it doesn't work out with the one which was found and that'll be the end of this year's attempt.

I really wish I could feel hopeful, but over a decade of bitter disappointments do not leave much room for such luxuries.


Tuesday, 23 June 2015

Surgery may be up sooner than expected

Yesterday's visit to the clinic for my radiologist appointment turned out be rather interesting. First of all I learned there that the radiologist merely wanted to have a few more MRI images of my abdomen. Initially assuming that this would be a quick 5-10 minute scan, I realised soon enough that at least twenty minutes had passed. By the time I got out of the scanner, over 35 minutes had passed. It was probably the longest of all nine MRI scans I have had so far. Suffice it to say that it wasn't very comfortable to lie motionlessly any more after the twenty-five-minute mark.

Shortly after the scan I met up with the radiologist himself. He explained that he had ordered the new scan because he wasn't sure about some details, but that the new scan showed the details he needed. This related to the vagina as visible on the scan images. Initially I had the sinking feeling that he'd retreat on his previous analysis and simply state that he couldn't see any female genitals. In the end, however, it merely turned out that what he had assumed was a normal vagina still looks a bit odd. This is most obvious on the horizontal slides, where you cannot see the clear 'H' shape you'd see with a normal vagina.

Whether this is due to the internal lining of the vagina in my case not being there or simply different (causing a different appearance on the scan) is hard to say. At any rate what was important was that this radiologist next explained to me that he had also had these very detailed images made so that they could be used for a surgery. It appears that in addition to the blood tests for pregnancy hormones and tumour markers it also seems sensible to get into contact with a surgeon. The main point is to get some answers about what things look inside, and secondly what can be done with it, specifically in a reconstructive sense. Determining what is actually present in terms of tissue is the first step.

I have my next gynaecologist appointment on Thursday, at which point all of these items will likely be discussed at the hand of the radiologist's report. I hope it all doesn't take too long. Especially finding a surgeon might be extremely tricky, based on earlier experiences.

As for how I'm managing everything emotionally, I'm mostly just going through it one step at a time while not allowing myself too much time to think about matters. There are too many questions, still, and too much waiting and the possibility of false hope turning sour. Most of all I just want it all to be done and over with, preferably this year. Especially now that the physical complications of my intersex condition are becoming so extreme and painful, I pray that I do not have to wait another year, two years or longer. I'm not even sure whether my body or mind will last that long at this rate.


Saturday, 20 June 2015

The loneliness of a guinea pig

Recently as I was talking with my mother, I was telling her about the current medical events I'm going through, including the medical attention I'm getting for the current complications of my intersex condition. What hit me was how enthusiastically she responded to my story, exclaiming that it was wonderful that German doctors were actually paying so much attention to my situation and actually (seemingly) helping me, very much unlike those Dutch doctors. At this I realised that this was indeed the case. My life has become easier and better.

In many ways it's a good thing to regularly talk with someone who still knows you from many years ago, unlike people who have known you relatively briefly. Mothers (and some fathers too, I reckon) are generally perfectly suited for this, as they have watched you grow up and develop into the person you are today every step of the way. My mother has made it very clear that I seem far more calm and composed than I used to when I still lived in the Netherlands. Thanks to her I am reminded of the fact that despite everything that is still not right in my life, real progress has been made thanks to the bold decision to pack up and abandon the Netherlands.

When we last left off on this blog I was anxiously awaiting news from this radiologist who had let me know that he wanted to speak me on Monday about 'something'. I realize that I haven't provided an update on this yet. Unfortunately this week has been rather busy with work, in addition to me not feeling well in generally, mostly in the form of abdominal cramps and extreme exhaustion. Monday's phone call with this radiologist turned out to be not so bad after all. He just wants to see me again next Monday for some further examinations as he wasn't quite clear about my genital anatomy and would like to fill in some details before finishing his report. Come Monday I'll thus be visiting the clinic again after work.

Following that I have an appointment with my gynaecologist on Wednesday. Topics there will probably include further blood tests for pregnancy hormones as well as tumour markers. I'll also address the reconstructive surgery to fix my female side. Since I do have a vagina and it is closed off, still, it makes sense to have it reconnected to the outside as this is the only way to actually inspect what is going on there with the pains and discomfort without cutting me open each time a sample has to be taken or examination performed.

Throughout all of this there is mostly just the pervading loneliness. I notice that I still have a lot of difficulty interacting with others, simply because of the disparate experiences as well as my post-traumatic stress disorder often twisting reality for me. Trusting others is still completely impossible for me, as betrayal remains the expected response. Because of this I keep my distance, which of course doesn't help to solve the aforementioned problems. It's a cycle that's very hard to break.

It's not something which I can change. I cannot make people like me. I cannot force people to become friends with me. I cannot break through more than two decades of trauma on my own. I cannot even considering starting a relationship when traumas make me both unapproachable and paranoid. Getting closer to people just results in more pain and confusion or even anger on both sides.

What can I do? I can continue on this course to hopefully solve this medical problem of my intersex condition this year, physicians willing. I can work on my pet projects at home. I can work on my professional career. I can keep eating healthy, sleeping regularly and do household chores.

I can however not fill this gaping hole of utter loneliness and betrayal that I feel inside my soul. Maybe time will heal this. Maybe others will eventually help me with it. Maybe not.

But may the gods strike me down if I'm not the prettiest guinea pig I have ever seen.


Sunday, 14 June 2015

The intense sadness of mortality

Despite the knowledge that whatever may be going on inside my abdomen at this point is most likely going to be benign, it's hard to not imagine a far worse outcome. Reminiscent of those dreams I commonly have in which I know that my existence will end the next day, the situation I am in at this point adds the very real fear and realisation that I may not have long to live any more. Regardless of the reassurances from my rational mind, it's proving to be quite impossible to stop the emotional side from imagining that this body will soon cease to function due to some terminal disease.

Even though I'm hardly unfamiliar with mortality on a personal level, with having made multiple suicide attempts and the like, it's a somewhat unfamiliar fear to me to be confronted with my own mortality while the threat to my existence isn't self-made, but something beyond my control. This in the realisation that I do most definitely want to continue living, especially now that things are finally somewhat working out. It is mostly this latter realisation which makes me feel so incredibly sad.

It's the utter helplessness and frustration, but also the frightening realisation that this body you are so used to always being there, always just being... oneself, might just be gone. That face you see in the mirror... gone. Those hands... gone. And with it you. Your self. Everything that makes you into yourself.

It's an astoundingly paralysing sensation, to be honest. What's truly relevant beyond sheer survival at such a point? Everything else becomes a useless distraction.

I hope that I can soon move past this feeling. Hopefully starting tomorrow after talking with this doctor.


Friday, 12 June 2015

Playing the waiting game again with the MRI scan

This week has been pretty busy, if not outright hectic. From electrotherapy treatments for my shoulder on Tuesday and Wednesday, to running 6.2 km yesterday without prior training, as part of the B2Run event here in Karlsruhe, to today's MRI scan. Mix into that rushing to get things in order at work prior to a software release, and you can probably somewhat imagine my mental and physical condition right now. Unfortunately up till a few hours ago it seemed that I'd at least go into the weekend rather quietly, with all major issues resolves or at least put into order. Then I listened to the voice mail from a missed call earlier today.

The voice mail was from the doctor who had analysed the scan's images and talked me through his findings shortly after the MRI scan was made this morning. He just said that he wanted me to call him back on Monday because he needed to discuss something. No further details were provided. The clinic was also closed by this time, so no recourse remains for me except to just wait out the weekend and make that phone call on Monday to find out what this 'something' is. I imagine a doctor wouldn't call for something relatively irrelevant, or at least mention details on the voice mail if it was. It's all rather ominous.

Today's MRI scan went without issues. After a brief wait following the scan I was invited to hear this doctor's analysis. His findings were that while he could clearly see what looked like a normal vagina, he could not see any other defined female genitals, or any defined growth or anything which might somehow hint at the reason why my body thinks that it is pregnant. What this would mean is that, as this doctor said, to check my blood for any signs of elevated pregnancy hormone as well as markers for tumours and the like.

Now I got this voice mail and the many questions it raises. Did the doctor overlook something? Does he think he was wrong about something? Does he want me to come in again ASAP for a more detailed scan? Is it something serious? Did something go wrong somewhere? No answers yet, just a few rather uncomfortable days of waiting ahead of me and another phone call of the type one rather does not ever want to make.

It does not appear that I will be getting any chance to relax or to not feel stressed for a while longer at least.

It's probably a good thing that I am an expert at playing the 'waiting anxiously for life-changing information' game after more than a decade, I guess... Who needs to feel relaxed and safe anyway?


Friday, 5 June 2015

For what am I but a medical experiment?

Tomorrow starts the one-week countdown until my eighth MRI scan and hopefully the obtaining of some useful results which might conceivably explain what is happening to my body at this point. It's frankly beyond bizarre to be in this situation. Until the beginning of this year I was merely trying to solicit medical help to answer questions about my intersex condition. This year I'm trying to find answers to increasingly mystifying physical symptoms.

Trying to define what I'm seeing in the mirror at this point is pretty much impossible. Looks like a woman, sure, but also one who has all the outward signs of being pregnant including distended abdomen and linea nigra, yet supposedly without uterus and ovaries and without accessible vagina. Oh, and with a penis. It seems more like an amalgamation of multiple bodies than a singular one. Trying to think about it all too much merely makes me feel terrified of what might be growing inside my abdomen.

For more than a decade now I, as a novel medical experiment, have been growing and developing, with this year apparently as the culmination of all those efforts. What will happen next is anybody's guess. It was a bit touch-and-go when I tried to get medical help which would have disrupted the experiment, but with that risk averted, this year we should hopefully all be able to observe what happens to a body with this type of hermaphroditism when left untreated and undiagnosed for so long.

Once the experiment is over, hopefully the results from the post-mortem will be able to teach us so much more about the interactions between such disparate body configurations when they're forced to cooperate in a single body. The side-effects from this should be fascinating. It's a shame that I will not be around to observe the result of the experiment.

It may all sound bitter and melodramatic, yet after more than a decade of what amounts to either outright lying or complete incompetence (or both) on the side of physicians, I find it hard to not feel at least somewhat like I'm trapped in a Mengele-esque experiment, with its seemingly complete disregard for me as a human being and my general well-being as the psychological and physical suffering increases. For more than a decade now I have pushed away any sensations of discomfort and pain - whether physical of mental - and forced myself to go through just one more appointment, just one more test in the faint hope that maybe this time would bring the so hoped for release and freedom. This all in the knowledge that doing nothing can have severe consequences considering the possible medical complications for hermaphrodite conditions.

Said complications seem to have finally arrived this year, after suffering milder complications for much longer. I hope more than anything that they'll find something on the MRI scan and/or any subsequent tests which can help me and that they'll actually be honest and do their job. Informing me about their findings and plotting the best course to fix whatever is wrong.

I am not a medical curiosity. I am not a plaything for physicians and psychologists to poke and prod at, to then forget about. I'm a human being with feelings and the capacity to feel pain and distress. Maybe once this medical experiment ends I'll finally be able to actually feel like I am this human being. At this point in time, however, I'm trapped inside this dark cell, to be only briefly released for yet another experiment, only to be put back afterwards.

It is with such feelings of trepidation that I face next week's MRI scan. Will it just be another experiment or is this is a genuine attempt to help me? I wish to believe it's the latter, but bitter experience says it's always the former. I hope so dearly that it'll be wrong for just once.


Returning to Ishiguro Kazuo's 'An Artist of the Floating World'

The first time I read Ishiguro Kazuo's novel 'An Artist of the Floating World', I was still in High School. The second time I read it was mere days after finishing reading it that first time. Something about its story drew me back to it, which is something which has never happened to me before with any other work of fiction. After that second read-through I did however not read it again until a couple of weeks ago. Although I have purchased this book twice over the past years, I never felt the need to read it again. That, or maybe I wasn't sure whether the interpretation which had been burned into my soul would live up to a new read-through.

The current dead-tree version I possess of this book is the hard-cover 1986 release by Putnam. Sadly it appears that this book is relatively hard to obtain new via Amazon at this point, ergo I had to go for one of the many used copies available. Possessing the bound version with acid-free paper in itself is a great thing, as despite being almost thirty years old, this book looks practically brand-new, aside from the thin cover such bound books tend to have around the much more durable hard cover. Anyway, the reason I decided to read this book was because I thought that my e-reader device had died, and I needed a dead-tree book to help me get through this difficult period. As my gaze fell upon this particular book I figured I might as well read it again.

'An Artist of the Floating World' is a book whose summary is rather brief and succinct, yet without revealing much of what makes it into such a great story. It is written as the fictional thoughts and recollections of a Japanese artist during the late 1940s, early 50s, who became a painter during the early 20th century in Japan, then rose to prominence during the 1930s and 40s. After the war, not only him, but everyone of his generation tries to come to terms with the new Japan, especially in light of their own actions during the war.

Note that spoilers will follow judiciously in the rest of this text, so be forewarned if you haven't read the book yet.

If it wasn't clear already, this is my number one favourite book, together with Ishiguro's first book: 'A Pale View of Hills'. What exactly is it that appeals to me so much in the story? I'm not entirely sure. The perspective of the story is that of a person who has lived most of his life and seen the country he was born and raised in undergo major transitions. From the rise of the military rule, to the role of the Emperor, to war and consecutive American occupation, each of it all are almost distinct countries, with each transition leaving behind entire generations as they are forced to adapt.

The main character - and fictional author - is Mr. Ono, a renowned painter. His rise to prominence took place during the time of the Japanese occupation of Chinese territory in the 1920s, followed by Japan's involvement in the second world war. This all against the background of Japan trying to assert itself as a major power in Asia. No longer a 'country of farmers', the new Japan would be both respected and feared. Artists became involved in this as well, creating the many paintings, songs and posters which visualized and otherwise gave shape and expression to this movement. Mr. Ono, along with his many colleagues, were also part of this.

In the title, the term 'floating world' refers primarily to the pleasure districts, where a man could lose himself for a night in a world which the next morning would turn out to be insubstantial and fleeting, a feeling which artists like Mr. Ono tried to capture in their paintings. Yet it also refers to the world of nationalism and patriotism which so pervaded Japan during those decades. With the rude wake-up call of the surrender and occupation by the Americans, this world - too - turned out to be insubstantial and fleeting. No longer seen as patriots and 'true' Japanese, but as traitors and people with a questionable past, their reintegration into the rapidly developing modern Japan is tedious and wrought with obstacles.

To Mr. Ono his family is the most important thing, as he watches over his two daughters until they're old enough to have a suitable husband found for them. His son unfortunately died during the war, and is not talked about much. His wife died during the bombardments, which still haunts him, even as he has accepted her death. The scenes he describes of the current day events are intermixed with many recollections and fond memories, as the events leading up to his status as a retired artist are puzzled together. The image which forms is that a man who has seen much, experienced more, and still tries to find peace with the new Japan.

Pervasive throughout the entire story is the searching for answers, mostly to questions about in how far his own involvement as an artist in the war efforts really mattered or contributed. Meeting with an old friend, this friend remarks to him that in the end their efforts probably didn't matter much, if at all. He also adds that they shouldn't blame themselves for what happened, for it was just the world they found themselves in. All of their ambitions and energy went towards that which they believed to be rightful and just, even if afterwards it turned out to be misguided. If the world had been different, the world today would look differently upon their actions.

That in itself is the whole crux of the issue in my view as well. What has happened, has happened. The only thing which matters is the feeling which you carried in your heart when you did those things. Were they acts of malice, or of ignorance? If you truly believed that the things you did were because it would make life better, or at least would contribute to a positive cause, then nobody should be able to question your moral integrity based upon it.

This is also reflected in the story's final act, wherein Mr. Ono observes a group of young office workers at one of the many new office buildings chat and laugh. In that moment of redemption he realizes that while the old Japan he knew and grew up in may be gone, but that the core, the essence which used to invigorate and inspire him is still there. It is the letting go of the last memories of that floating world, of that tantalizing but ever-fleeting recollection, which allows one to grasp hold of the hope that the present and future hold more than enough promise to fill the gap in one's soul that those fleeting recollections have left behind.

To me it's truly the subtlety of this story and the strong message which it carries which draws me so strongly to it. It's heavily nostalgic and melancholic, yet interspersed with the small joys and hopes brought by the present and future. That to me makes it into one of those rare stories which is capable of fully grasping my attention in such an impressive fashion. Not just the me of fifteen years ago, but also the much more experienced and (possibly) wiser me today. To be frank, I find it astounding that the in my view lesser work by Ishiguro 'The Remains of the Day' is far more popular and was even turned into a film.

Possibly this also underlines that which this story tries to make clear: that the people of today will go along with that which is the current cultural group-think, whether it is some kind of revolution, or the desire to transform one's country to fit some kind of ideal. Nobody really wants to step back and look at the whole picture with a scrutinizing eye the way a painter would scrutinize his latest work in progress. It's simply far easier to just stay inside one's own little world and allow it to float along with the flow alongside all of those other floating worlds.

Reality, after all, is just what you accept it to be.