Monday, 29 February 2016

On refugees and feeling safe

In December of 2013 I left the Netherlands with my meagre possessions in the back of a van, bound for Germany. My intent was to finally escape the clutches of the Dutch systems and their persecution. Even though I was fortunate to have a job and supportive people already in what would become my new home, it was still a big leap.

Most clearly I remember sitting there in the van, watching the reception on my phone with Dutch SIM card fade until it switched over to a German provider and me looking up, at the road ahead of me, realising that I would never be coming back. This accompanied by the sense of trepidation about this decision.

Now, over two years later, I wish I had been able to take this leap of faith sooner. I'm also intensely grateful to those who have supported me over the past years to make it possible for me to establish a new life in Germany and from the looks of it soon resolve all outstanding issues.

I will however never forget that for all intents and purposes I was a refugee, fleeing a country where my life and well-being was under threat. At many other points I had been at the edge of deciding to gamble away the last of my money on a plane ticket to a country where I might be able to rebuild my life. It takes so much courage to take that step; abandoning everything and hoping that it will work out somehow.

Currently people are still escaping a terrible civil war in Syria and other sources of violence in that area, with countless refugees fleeing from everything they own to try and find safety and maybe a new life elsewhere. One can live without possessions, after all. Most important is to be safe.

When I then see this amount of aggression their presence invokes not only in Germany but also in other countries, I cannot help but feel like it's something personal. How different was my situation, after all? When I hear scornful remarks aimed at these refugees about how well-dressed they are and that many of them have a smartphone, I just feel sad inside at such a lack of understanding.

Then the questioning of their motives. They're just there to profit from the systems and people in those countries they flee to, and such assumptions.

I wasn't dressed in rags when I first arrived in Germany. I also had a smartphone and even a laptop with me. My motives were to find a place where I could be safe, rebuild my life while supported by those wonderful people who gave me such an unimaginable opportunity. I wasn't there to profit off anything or anyone. On the contrary, I was more than prepared to give back at least equal to that which I had been provided with by others.

I then hear and see these... extremists say such horrible things about refugees, of which most no doubt are much like how I was, over two years ago: exhausted of moving, tired of fighting, numb from the pain while trying to find a place away from the fear and terror. Meanwhile assailed and harassed from every side by those who try to label you as an opportunist and manipulative person.

At witnessing and reading about these scenes and related demonstrations, I feel sick to my stomach as very unpleasant memories resurface. Memories of rejection, of having to fight to just be accepted as a human being. It makes me question how welcome someone like me truly is in Germany, in the eyes of these... people.

One shouldn't need to have been a refugee to just treat these people who flee from violence as fellow human beings.


Wednesday, 24 February 2016

Death, reproduction and a body

Death is a fascinating thing to think about. The terminating of an existence. A consciousness which is cut off and which will as of that point no longer exist. An existence which no longer is. The realisation of just what a body is: a fragile vessel for electromagnetic impulses which comprise that which we refer to as ourselves.

I remember how as a child this realisation initially upset me; the thought of everything I saw around me being mostly just window dressing for what was really going on, and the perturbing notion of everything being far less solid than imagined. My own existence being consequently of far less note than I had once assumed.

Much of these musings go back to the central question of what it means to be human. As many around me see fit to reproduce as if that's the natural thing to do at that point - which it definitely is from a biological point of view - I find myself confronted once again with such questions.

I am incapable of reproducing, due to how I was born. My own existence in itself being very lucky in a sense since most pregnancies involving a hermaphroditic embryo never carry to term, instead suffering a spontaneous abortion as the body recognises that something has gone wrong with the pregnancy. Whether or not I was born never mattered from a reproductive point of view. That's a weird thought.

I am capable of dying. Theoretically at least. There's nothing to be gained by dying, ergo I will not embrace or accept it, as most seem to do. I do not think that dying is in any way related to being human. On the contrary. I have tried to die before, and failed. I know what lies down that path.

So far I have spent what will likely be roughly a third of my life on largely nonsense, being the dealings with the most regressive, conservative and closed-minded elements of the medical community, not to mention that of humanity as a whole. Two-thirds, or less, remain.

The clock is ticking. What will it be? What will I do? Can't reproduce. Don't want to accept death.

What does it mean to be human?

What are my options?

What will I do?


Sunday, 21 February 2016

Appreciating a life without pain

One day, as a young teenager, I was sitting in front of a small television in the hallway of the house where I grew up. I was playing a Super Nintendo game (Lufia II) and generally having a good time when suddenly I felt a sharp, burning sensation on the left side of my head and neck. Next thing I knew, I was lying on the floor next to my chair, with the game's music still continuing in the background. I had no idea how long I had been lying there.

At that time I didn't think much of it as I was feeling fine - just a bit odd and with a weird metallic taste in my mouth - so I just got back on the chair, picked up the controller again and resumed playing.

This morning I had a similar experience, only while lying in bed. While turning my head to the left, I suddenly felt a bad pain in the left side of my neck, radiating towards the left shoulder and my head. Dismissing it initially as a muscle I must have pulled by accident, while touching my neck to figure out whether it felt painful anyway, I suddenly felt white-hot pain flaring up in my neck.

The hours after this are a bit of a blur. I remember trying to find a comfortable position, while trying to figure out what to do next. I initially figured that I'd just take some painkillers and sleep it off, but as I got up into a sitting position on the side of my bed my vision blackened and I heard ringing in my head.

Next I found myself trying to figure out where the hell I was, beyond uncomfortably lying on a floor somewhere. After a short while I figured out that I had fainted and fallen off the bed onto the floor, leaving a nice bump on my forehead. Abandoning my plans to get painkillers, I tried to back onto the bed, only to start feeling sick again.

Cue another few minutes of disorientation and feeling absolutely sick accompanied by a metallic taste in my mouth. Then of slowly crawling into a semi-comfortable position where the infernal pain in my neck wouldn't bother me so much, or make me pass out again.

At that point I considered calling the emergency services, but couldn't convince myself just yet. As a last test I figured I'd try to sit up again, so that if I fainted I'd fall onto a soft fluffy pillow instead of the hard floor. To my surprise the sick feeling and ringing noise stayed away and I was able to get painkillers and everything.

That's the point where I pretty much still am at this point. It appears that much like when I was a teenager that one time a nerve got pinched, possibly as a result of the severe emotional stress I have been under for the past months. I'm currently doing pain management (paracetamol, ibuprofen), waiting for the pain to subside on its own.

While not ideal, it at least allows me to function again on a basic level. I'd really like for this pain to fully go away, though, instead of having these sudden pulses of pain in my neck if I try too much.

It would be wonderful to be without pain again, even if it seems like it will never happen again. Just like with the aura-based migraines I used to frequently suffer, I have come to really appreciate those days when I am completely free of physical pain.

Maybe tomorrow will be like that again.


Friday, 19 February 2016

A sobering, sane reality

Yesterday was the long-awaited, and very much exhausting appointment with the endocrinologist and intersex specialist (a retired gynaecologist). As those who have read the previous blog posts may have noticed, most of the exhaustion started long before yesterday, so I'm at least grateful that this appointment is done and over with. How I feel about its results I'm not entirely certain yet.

There are certainly many positive aspects to yesterday's meeting, not the least of which is the total and complete acknowledgement that I am a hermaphrodite without any reservations or doubts. This evidenced by the presence of not only a penis, but also a basic vagina and semi-functional ovaries. The biopsy was also confirmed by them as showing not fully formed testicles, with no chance of them ever having produced sperm.

With the third blood test's results taken into account as well, everything looks pretty normal there, with only my estradiol levels being on the lower end of the scale for a woman, ranging between 25-33 picomol (scale from 27 - 100). Everything else looks normal for a regular woman. The upshot of this is that my monthly cycle is at least partially explained due to these functioning ovaries, but also that I have to keep taking extra estradiol as a precaution to keep healthy bones, with a recommended estradiol value of 50 pmol.

With four weeks I will have more blood drawn to see how things are holding up hormonally. The intersex specialist will meanwhile look into surgeons for me, though both cautioned me that reconstructive surgery may not be possible with the vaginal tissue I currently have. They also pointed out the major risks of surgery in that area. To this I merely said that I want to talk with surgeons about what options they see using the available MRI scans before I will make any decision there.

As far as the monthly pains go, I think that that will be the main sticking point, as life without a functional, accessible vagina is far easier to imagine than one with constant, chronic pain, it draining much of the joy one could have straight out of life. As I'm typing this I find it to be horribly uncomfortable to even sit on a chair at moment, as down below it feels like everything chafes, burns and itches. I found myself cursing my poor German vocabulary yesterday a lot while I tried to describe these sensations.

To recap, I feel grateful that things are at long last moving forward, with real medical solutions in sight. Yet I am not without doubt and questions plaguing me at this point, still.

The uncertainty about surgical options. The perceived lack of understanding of or care for these monthly pains, even though it's what literally pains me the most every month. Also this big, wide-open world I am suddenly cast into, which is forcing me to look at everything with new eyes. What is important, and what isn't? What would make me truly happy and what can I live without?

The thought that I'd just be sent away with the same hormone therapy as before, with surgery off the table as realistic option, admittedly makes me feel a bit bitter and disappointed. Even though no such thing has happened yet, it is a possibility which I must consider at this point. For more than eleven years I have literally fought almost to the bitter end to get answers and help. It is however a story which could have a very anti-climactic end.

It's a sobering reality, indeed. And yet I feel grateful at least that while the three of us sat there, it felt casual and at no point did I really have to defend myself. Both of them asked after my contacts with surgeons so far, unable to believe that they'd really just put me away as a transsexual, if that, and leave things at that. It all felt so... sane and normal. A far cry from the madness which the medical world has filled much of my waking hours with over the past years.

I guess what makes me feel so bitter and disappointed for the largest part is that I am now forced to make up the balance, assuming that this year will be when this medical story of mine will reach some kind of conclusion. It's hard to say that it was all worth it. Being a highly unique, possibly singular medical case hasn't helped my life in the slightest, from what I can tell.

A case which essentially started when I was eleven years old and got to experience doubt from doctors as well as from others around me for the first time. All thanks to me having my first period as a 'boy'.

I think it's normal to feel this way at this point. Maybe if things work out more positively than the bleak image I'm sketching here, I probably could only describe my feelings at that point as something far exceeding 'joy', past 'jubilant' and straight into hitherto unexplored regions of relief and joy for which no human language has words. That, however, is sadly mere speculation at this point.

What I have at this point is very little, when it comes down to it. Basically just the acknowledgement that I am intersex and a hermaphrodite, which is something I first learned back in 2007, nearly nine years ago now. It's great that I don't have to fight that battle any more, and that I seem to have medical professionals here in Germany who genuinely wish to help me.

What will happen from here is I think what will determine most strongly how I'll feel about yesterday's appointment, life-changing as it was and still is.


Wednesday, 17 February 2016

The questions you'd like to ask

I'm really grateful to have a day job which keeps my full attention occupied. That was one of the first thoughts I had earlier when I got home from work and found myself bursting out in tears within minutes. There truly is nothing which is more frightening to me than to be alone with my thoughts. Or more succinctly, the terror of having to confront the possible answers to the questions I fear the most.

I keep playing through the last conversation I had with the endocrinologist in my head, poking at it, analysing it to figure out how to interpret what has been said. I know that tomorrow's meeting is just about clearing up and synchronising on where I have been the past eleven years with which doctors.

Yet my PTSD does not care about that. I'm just feeling terribly upset and terrified. It feels just like those nightmares I sometimes have in which I am just living out my last day, knowing that come tomorrow, I will be executed. Knowing that it won't be anything like that, and likely should be one of the most wonderful days in my life as true progress will be made again does not help in the slightest. The feeling of absolute terror remains.

Hoping and knowing that yes, I will get help and answers tomorrow, as well as a real outlook on the end of this horrible nightmare which has now occupied every waking moment for more than two decades. Yet fearing that tomorrow the hope I have will be crushed again, to maybe never recover again.

Terrified of being hurt again, yet knowing that not asking for help also means to suffer.

Will you help me, please?


Tuesday, 16 February 2016

The 'sick of counting down' countdown

All of us will find ourselves anxiously counting down the days to something important, whether it is to hear the news about a graduation, a pregnancy or a surgery's outcome. All of them are life-changing events and important in their own right.

Now picture waiting for such an event, only to be told to wait another few weeks or months. And again. And again. Even as you begin to piece together a picture of the truth, you just keep hitting that same brick over and over as you find yourself unable to answer the question of why it seems so ridiculously important to these people to not tell you something which in the end should only be important to you.

Cue conspiracy theories and a slow descend into madness.

The questions I have been wondering about for over eleven years now involve such irrelevant details like whether I am fertile in any way, and what I might have to tell a prospective partner about how this body of mine is put together. More importantly it concerns these monthly pains I have suffered through since that one horrific day when I was eleven years old and everybody thought that I had made up that terrible pain which made me think I was dying.

Related to it there are also questions about my future health, considering that my reproductive organs did develop in a way which is everything but regular. Reports of increased cases of cancer and other unpleasantness by hermaphrodites do have me worried.

For at this point I know what my body is; at the very least the rough outline. I am not male. I am not female. I have reproductive organs of both, yet not convincingly one or the other side. Ergo I am a hermaphrodite. All I need now is help from doctors who do not try to make me believe I am crazy. Few things are more discouraging than to wait months, counting down every day at the end, only to have a doctor dismiss you like that, telling you to start realising that you're a transsexual, even when you know that's the one thing you are not.

It's much easier to believe in yourself when you don't have an army of doctors and psychologists telling you that what you think and what you see in the mirror is all wrong, but that they'll help you see things the right way. Forcefully if need be.

It's much easier to never have to count down to a chance to learn the truth any more.

I'm not insane. I'm just going through this same thing over and over, yet expecting a different outcome.

Just two more days left in this countdown.


Wednesday, 10 February 2016

The problem with things not going wrong

Today I had to have some blood drawn at the clinic as I wrote a few days ago for the third blood test. It was mostly a weird experience this time. First of all due to having to wait for nearly an hour beyond my appointment time despite there being no one else waiting. Secondly when I asked after the test results which I was supposed to receive the results of, they weren't able to access the data or such. It was just weird.

Being forced to sit there in a clinic's waiting room made it basically impossible for me to escape the many memories and thoughts which spring forth from the traumatised parts of one's past. I'm not sure I'll ever learn to not distrust and fear doctors and everything associated with them. I would really like to, though.

The worst part probably has to be the intense paranoia one has to suffer through, imagining one scenario after another based upon a severe lack of information and likelihoods, whether real or imagined. Next week Thursday is my next appointment with the endocrinologist and this intersex specialist. I hope I can not have nightmares and a general lack of sleep until then. And of course that it all goes as hoped.

Sitting there in the waiting area of the clinic I realised just how intense my fear of anything medical is. The fear of being judged, of being dismissed, of being called crazy again, of having all of my symptoms dismissed as being merely psychosomatic.

While I had my blood drawn today, I caught a glimpse of my open medical file on the computer screen next to me. While it seemed generally positive in the sense of what one would expect from a doctor who is exploring a puzzling case, it also listed the wonderment about me having a monthly cycle despite this being unlikely due to my low female hormone levels.

As I'm going through the motions of menstruating today again, I can only wish that these pains were only psychosomatic. What lunatic would voluntarily sign up for these cramps, pains and upset abdomen?

Please let this year be the end of this maddening journey...


Sunday, 7 February 2016

Veiled worlds: a new short story

I just published a new short story, which can be read for free at Scribd:

It's 7 pages in total, with as main genre 'thriller'. Due to certain... graphic scenes I'd recommend it for ages 16+.

Now, for those interested I will discuss the why and what of this story below. This means spoilers, naturally.

I first got the idea for this story last year and even began to work on it. The central premise is that of being close to 'normal' life, yet unable to interact with the people inhabiting that normal life despite there only being a flimsy barrier between them and the main character.

The actual events described in the story are partially based on my own experiences, specifically the scenes of domestic abuse, and my own experiences of feeling isolated from normal society. The latter contributed significantly to the original idea for the story as well as the feelings experienced by the main character.

I can say that I have never been physically tied down in the way that the main character in the story was, but the feeling of psychological bonds are quite similar. There was also that event where a doctor sent the police after me, who then had me locked up in a cell for an entire night for no good reason. That feeling of helplessness, hopelessness and the intense realisation that nothing you can do matters is among the most horrible feelings a human being can ever fear to experience.

With that latter event there was also a large amount of humiliation involved, of the kind described in the story, just less messy and with a lot less privacy. They are things which should be traumatising to any sane, reasonable human being and I feel that it is that kind of debasement, of reducing a human being to something less than a beast which is among the most inhumane of acts.

To me this story is relatively extreme, and I have questioned for a while whether or not I should even publish it. In the end I feel that it is still a story others may wish to read, even if it's not exactly a pleasant read. I hope that you, the reader, will agree with that assessment.

As for the ending of the story, the question of whether the main character survives is left open. In the end it's not what it is about after all, don't you agree?


Saturday, 6 February 2016

Living with a body which doesn't make sense

After a quiet week, in terms of physical pain, today the abdominal cramps began again, announcing the happy joy fun part of the monthly cycle referred to as 'menstruation'. Everything right on schedule. Yet none of it should be happening if one looks at my hormone levels. Despite having been off artificial hormones for more than two months now, if anything my periods are now more severe, painful and more compromising for my daily life.

The endocrinologist is puzzled about the hormonal results so far, as am I. If anything could rub it further in that my body is anything but 'normal', I'm not sure what it could be. Biologically I'm neither male nor female, though more of an alternate female version of regular female physiology, maybe.

My main feeling these days is just one of exhaustion, of feeling so confused by this body of mine that I can no longer come up with any plausible theories to explain what this body of mine is, or why it can even exist.

I do not know what this body is. I do not know how to look at it. I treat it as a female body, because that seems to make sense, yet at the same time it is so overwhelmingly clear that the differences are major and confusing.

I hope so much that the coming months will see actual medical help along with answers, surgery and less monthly pain.


Thursday, 4 February 2016

Progress, and so many more questions

After not hearing from the endocrinologist for a week, I decided to write another email, asking what the status was. Within two hours I got called by her, and currently I'm sitting here typing this, while feeling more than just a little bit overwhelmed and torn between so many emotions and sensations that I have no words to even begin to describe them.

On the main point, that of the 33 picomol level of estradiol found with the first blood test, the second result was pretty clear: it wasn't the natural hormone level, but that of natural plus the artificial estradiol. With the second test's results the estradiol levels were significantly lower.

That wasn't the confounding part, though. That was that a seemingly unrelated hormone along with a few others had spiked in this second result set, for which they cannot find an explanation. I am now to come in for another blood test next week, the appointment for which I'll be contacted about tomorrow. Then on the 18th I'll have my next appointment with the endocrinologist, but accompanied by the intersex specialist she has been consulting as well.

The past weeks that I have been waiting for these results, I have harboured thoughts being whispered to me from the dark, traumatised sections of my mind, insisting that I was going to find disappointment with this current attempt at trying to find medical help. It was no surprise therefore that I was feeling apprehensive about this phone call earlier, half-expecting to find another dismissal of my case and me being sent away to find 'proper' (transsexual) help or some such.

Thus when the endocrinologist was talking about how this intersex expert recalled hearing my name before, and found that I had been in contact with many doctors over the years, I felt myself bracing for that swift kick to the head and the shattering of the few dreams I still had.

Instead she just mentioned that they wanted to talk things through together to make sure that they didn't try contacting the same doctors I had contacted before already. She also mentioned that together with this specialist they had looked at the MRI scans they had of me, and could see the ovarian tissue on it. Not as fully grown ovaries, but more as strings of tissue, only partially developed, much like the testicles were.

With this sudden overload of information I'm not entirely sure how I am supposed to feel about things. Happy that things are still progressing, I guess. Relieved that nothing bad happened so far. Frustrated and disappointed that my hormonal situation is still so incredibly unclear, and offers no explanation for the physical symptoms and pains.

I don't think that my hormonal situation has ever been clear. When I was about eleven years old and got my first menstruation-like symptoms, I wasn't using hormones. During more than a decade afterwards I didn't either, yet I still had regular pains which I simply ignored, figuring I had just eaten too much, or the skin had become irritated somewhere for some reason.

Now it appears that I cannot take these extra hormones any more, and that the rest of my hormone levels are completely out of whack, so that even an endocrinologist and intersex specialist combined can make heads nor tails out of it. There's no explanation for the linea nigra stripe I have on my abdomen either, this way.

At this point I realise so well why I have kept looking for answers about my body during the past eleven years; even just with these initial findings I'm already so aware of how darn little I know about this body of mine. So little that just this initial investigation is already throwing up so many mystifying questions.

I hope that this year the mystery will finally be fully revealed.


Monday, 1 February 2016

That empty pillow

I remember well that moment, now a few years ago, when you asked me to become your girlfriend. I also remember in painful detail my refusal. Regardless of my motivations and no matter that I still feel that it was the right decision for both of us, it still hurts inside.

For some reason when I moved into my new place and had to buy a bed - together with all other furniture, I decided to get a queen-sized bed. A regular twin-sized bed would have sufficed, but something made me buy the larger bed, along with everything else to get two matching sides.

Now, I often find myself looking at this empty side of the bed, staring at the empty pillow and imagining a reality in which this setup didn't seem like some twisted way to torture myself. Then again, having only a twin-sized bed taking up a fraction of the bedroom might have just the same effect.

In the end I just have to admit that the problem appears to be inside of me. A desire to be loved, and to love back, but no way to express this or expectations of it ever becoming a reality. Above all an inability to love myself.

Maybe some day I'll learn to know myself and discover that I'm actually a really cool person to hang out with. Or maybe it'll turn into the worst date of my life. Worse than all those times I was taken on a date without being aware of it in my horrible nativity until the sudden attempt to kiss me.

I hope I'll be gentle.


P.S.: this short story I wrote last year, called 'In Between - A love story' might be of interest, too: