Sunday, 26 April 2015

Intersex death row, or: why I'm desperate for answers

One's mortality is something we're all aware of to some extent, but there's nothing like having the prospect of one's imminent death looming in one's future to really motivate one to analyse one's feelings on the subject.

I do not wish to die. I wish to just fix all that's wrong right now and move on with living, never thinking about taking my own life as a way to stop the torturous pain. The question which I get asked a lot is why I don't do just that: accept my body, accept what has happened to me and move on.

Today I'm yet again virtually crippled, with a constant burning pain in my lower right abdomen, a distended abdomen, sharp pains in the groin region, painful hips, a slightly numb right leg and a sensation of severe inflammation in the vaginal region. Add to this feeling of exhaustion, the headaches and a near-complete lack of appetite combined with bouts of nausea, and the question I'd like to counter the original question with is 'how else am I going to know what causes these symptoms, or how to treat them?'.

These symptoms aren't getting better, either. Some of them have been causing me grief on and off over the past decades, with the abdominal pain first striking when I was eleven years old. The sensation of vaginal inflammation started a few years ago and became severely lessened after I began to take the pill, yet for the past months it's back with a vengeance again. With the information I have on the many possible complications - ranging from cancers to sepsis - for an intersex condition like mine, it feels like I was placed on death row many years ago and am just working through the usual appeals in the faint hope that maybe this time the judge will admit my innocence.

As my body is beginning to throw up more and more warning flags in the form of pains and other symptoms, it also raises for me the eerie possibility that it'll be shutting down any moment now. It may have been fighting against infections, tissue intrusions and what not for these past decades, but is now ready to throw in the towel. I cannot say. Not with an absolute refusal by doctors to seriously consider my case.

I can only hope that this new gynaecologist won't be like the others. For the only other thing I can seemingly do is pray that I won't die this year or soon after.

Please don't let me die...


Saturday, 25 April 2015

To admit defeat

Last night I had to watch on helplessly as the life slowly left the body of my young daughter. Unable to stem the flow of blood from the gash in her neck from the car's safety belt, I had known that she was lost to me the moment I pulled her out of the car's wreck. Yet no parent would admit defeat then and there. I tried to make her as comfortable as possible and whispered comforting things to her as she complained about not feeling so well. Yet despite these comforting lies, I felt the life fade from her frail body with every breath and every cough as I held her during these last moments. Holding such a small body in your arms and knowing that the person inside it will never grow up to be an adult is simply impossible to comprehend.

Fortunately all of that was just a dream. Another pleasant nightmare courtesy of my mind. Despite none of it being real and me never having had a daughter, it was real enough that I still feel the pain inside my heart as I remember her face and can still feel the small, warm body cradled inside my embrace. Also the feeling of the utter helplessness of the situation, of being stranded far from help, with one's own child dying there in the cold yet completely unable to do anything about it.

It is in many ways comforting that I have only myself to take care of, yet the feeling of helplessness I feel towards my own situation and regarding helping myself is no less distressing. A while ago I mentioned that I was going to make a last effort to find the help for my intersex condition and with it find a solution to the medical uncertainty and psychological madness which has been torturing me for well over ten years now. With it I also hoped to find a solution to or at least a way to deal with these monthly pains, with the question there being whether they're side-effects of my intersex condition, with possibly harmful or even fatal consequences.

So far my GP has been very helpful and forthcoming, finding a gynaecologist who specializes in the topic of intersex, among other help. Only glitch was that I had to call this gynaecologist myself yesterday, in order to make an appointment.

I really thought I could do this. I had gone through the usual lists of fears, possible issues, motivational speeches and which things to say during the conversation until around half-way through the afternoon I decided to go for it. Yet the moment I held my phone and realized the full scope of what I was about to do - again face the same hopes, fears and possible crushing pain if it didn't work out like every other attempt - I just felt overwhelmed by this sensation of sheer terror.

Thoroughly shaken, I put the phone back again and wrote an email back to my GP, asking whether she could please make an appointment for me, regardless of the date or time, as I simply wasn't capable of doing so, psychologically. After doing so, I resumed working until the end of my usual working day, yet feeling the incredible numbness of dissociation as a result of crashing head-first into traumatic recollections like that. I also felt like an utter failure because I couldn't even handle a simple phone call like that any more, apparently.

Upon leaving the office I ended up chatting with one of my female colleagues, one with whom I have talked before. As it turned out, she had in fact found my website after our last talk, so I felt free at that point to talk about my failed phone call attempt earlier that day and my struggles in general. I must say that it felt really good to talk about it with someone else. Someone who isn't a doctor or psychologist. Someone who just listens really well and asks the right questions. I will admit to shedding about the maximum amount of tears as is allowed in a public place during this conversation.

One thing which it also reinforced for me is just how incredibly alone I am. Not just because of my giftedness, but also because of the struggles around my intersex condition. It's easy enough to deal with being smart by just finding the right people to hang out with, yet if you don't know what in the flying hell your own body is even about and you only get conflicting reports from doctors despite mounting medical issues, that's when you tend to really withdraw and avoid people in general.

If my GP is kind enough to make an appointment for me with this gynaecologist, what are the chances of it working out this time, with me getting the real facts and proper treatment/surgery? Based on my experiences over more than a decade I give it about a 5% chance. Maybe 10% if I'm optimistic. With how physicians in general treat intersex individuals almost as sub-human beings without a voice, I can only hope to find these rare physicians who aren't apparently born biased. Yet I still do not wish to hope, for doing so only hurts. Despair and bitterness are soothing and final.

Yet there is that one last, final, conceivable chance that this all could be resolved successfully and I'll just that which I am, the person who I actually am and with no physician, psychologist or the like ever able to declare me crazy, transgender, or worse, ever again. If there were to come true, my joy would know no bounds.

More than a decade of misery says it just won't work out. Yet to admit defeat is just too easy, isn't it? Just like committing suicide.

No wait, that last one is the most tempting yet also the hardest thing of all. I'd rather die than be intersex, yet I'd rather suffer through another failure of a physician than to try and take my own life again.

Please just let this waking nightmare be over with, soon...


Saturday, 18 April 2015

Striking a balance between suicidal depression and cheerful optimism

You probably are thinking right now that you've read something like this before already, not too long ago. You would be right in this assessment, for little has changed to warrant a difference. You're still living two lives, so diametrically opposed to each other that they couldn't be more dissimilar.

One of these lives has you working on a successful career as a software engineer, with ambitions to move into electronics and related fields. The other has you crying at night, until your own hands attempt to choke the life out of you on their own accord, only to fail and have you cry yourself to sleep over your own failure as a human being.

It's clear which one of these lives is real and which one isn't. Obviously you are an engineer, with an inquisitive mind and an insatiable appetite for learning. The other 'you' is merely the fragmented remains of what happens when one's emotional side collides with an obstacle it cannot work around, such as society.

All it takes is a reminder that you have a freakish body so unlike that of those around you, and that doctors and psychologists have and still knowingly and willingly torture and deny help because of it. Your mind may be part of normal society, but your body is most definitely not. That's why every reminder of this, of your intersex condition - or should I say, disorder? - sends you spiralling back into that other 'you', where you claw at your cursed skin with your nails as you cry in agony while only wishing for sweet death to finally claim you.

One of these lives has a future, one doesn't. The one which has a future will die with the one which doesn't.

Now, how do we resolve this little conundrum? I'm waiting...


Saturday, 11 April 2015

Remembering you

Waking up, I sleepily reach over to your pillow
Finding it empty, I only smile to myself.
Remembering the softness of your face
As you lie there sleeping.

Brushing away a few stray hairs from your face
Admiring every single curvature and feature.
The softness of your skin together with
Its warmth is mingling with my own.

Remembering our life together, every singular
Moment of happiness and shared understanding.
Never a harsh word spoken, or negative thought
Imagined or expressed.

Grateful that you do not truly exist, but are
But a figment of my imagination.
Not an illusion, for all of this is too real,
Just something more real than life could offer.

Never having to share any moments of pain or agony,
For the darkness is all mine to keep.
You're the light, that which will never be, yet
Always illuminating my heart.


Friday, 10 April 2015

On hating countries and people

Today as I was talking with a colleague, we happened to end up talking a bit about the Netherlands. They mentioned that they had been there once for a while and had found the people to be quite pleasant. They then proceeded to ask me whether I travel back to the Netherlands a lot since I was born there. My response was a curt 'no', detailed by saying that I hadn't been back there aside from a visit last year for something important. They seemed set back a bit by this, also when I further mentioned having had bad experiences there.

What surprised me the most was the strong feeling of negativity I felt both at the suggestion that it can be pleasant in the Netherlands and when I explained why I hadn't been back there in more than a year aside from one brief visit. It's really just pure hatred which I felt. Examining this feeling a bit more, as well as the underlying motivations, it's clear that it's simply because I cannot help but associate any part of the country to what happened to me, which all led to my current situation.

It's the same kind of helpless, impotent rage I feel towards people who use the highly offensive term 'Disorder of Sex Development' (DSD) to refer to intersex, as well as towards intersex and related people who do get medical help, and so on.

Most of it is just a frantic, desperate feeling of 'why me'. Why did they have to make me suffer. Why did they refuse me help. Why don't they believe the physical evidence even as it's staring them in the face? The sensation that this is all just a set up. That everyone is into it to ensure that I'll not get help and will suffer as much as possible. After more than a decade of trying just about everything and experiencing the weirdest and most suspicious things it's hard to not begin to believe that I never had a chance at making it through this in one piece, as everything was set up to make me fail at everything I set out to find answers to.

These past months the physical symptoms of what appear to be complications related to my intersex condition have significantly increased, including the abdominal distension, constant abdominal pains, loss of appetite and what not. With it looms the frightening prospect of me being weeks, maybe months away from a critical medical emergency as whatever is causing this abdominal swelling will push onto something crucial, something that's not the nerves to my legs, my bladder or stomach. With absolutely no information to work with there's nothing to make a more accurate prediction than somewhere between 'harmless' and 'imminent disaster'.

I have contacted my physician regarding this issue. Depending on her reply I should have an appointment next week after which hopefully will lead to some actual examinations and clarity on what is giving my abdomen the appearance as if I'm quite a few months pregnant when I'm not actively using my abdominal muscles to keep everything pulled inside.

I guess I am at least somewhat grateful that here in Germany physicians do not strive to actively deny the possibility of me being intersex, but fully admit to me at least having an intersex condition, with my medical file clearly listing me as being a hermaphrodite. That is one point which I could never get past in the Netherlands, at least in the medical and psychological world there. The helpless rage I feel when I am reminded of that fact - something which cost me literally years of my life - is quite befitting of such of offence committed against me. After all, I have done nothing to deserve such treatment but being born this way.

The prospect that it is this wilful ignorance and maltreatment, if not outright abuse I suffered which may ultimately lead to me not receiving in time the treatment which would have saved my life is more than just frightening. It undermines my entire faith in physicians, in psychologists, in entire countries and systems as well as the people in them. How can they be anything but avatars of sheer evil through ignorance, whether wilful or not?

Here goes nothing... once again.


Friday, 3 April 2015

How to kill one's body and not die

I don't know what to do with this body of mine. There doesn't appear to be anything I can do about it. Even if there are medical complications related to my intersex condition, then it'll just get ignored and waved away like everything else about it for the past decade. The possibility of getting reconstructive surgery is non-existing. I also don't know what this body even is.

Though female in basic appearance, in terms of genitals it's just a freakin' mess, with me having absolutely no clear idea of what exists/doesn't exist, or how to define anything. Without any further examinations/surgery I won't learn any answers either. It's a complete dead-end.

Starting this year, for weeks on end every month my abdomen now also swell up grotesquely, accompanied by various types of pains. Whatever feminine figure I had there is destroyed as well. I have to go to see a doctor about it, but I know they'll just ignore any complaints. Even though every month the pains get worse and I fear that there's only one possible outcome.

If I could I'd destroy this body. Annihilate every trace of it. Maybe get a normal body. Just a plain female body. I'll gladly take whatever issues come with it as they cannot possibly compare to what I go through with this current body of mine on a daily basis.

I will have to force myself to make an appointment with my gynaecologist this month. He'll surely be dismissive and just tell me to stop using the pill or something like he did before, even if it reduces the monthly symptoms significantly. There won't be any real examinations or tests.

Yet I will have to try it. One more time.

Then I can destroy this body. Forever.

And live to tell it.

Am I going crazy?

Maybe? I don't know. After living so long with a body I don't understand, then to suffer the incompetence, ignorance, abuse and hatred from physicians for a decade... there is just pain. Stress. Frustration.

I can't live with this body. I need to know what's wrong with it. I need that surgery. So that I can live.

Yet no physician allows me to live.

They all want me to die.


I don't want to die...

Please help me?


If I'm alone... I'll die...

Don't leave me alone...


Identity and intersex

I had originally wanted to wait a while longer before writing this blog post, but seeing an article on one country (Malta) finally seeing the light [1] when it comes to intersex individuals convinced me to just write it already.

Some may have noticed my sudden absence from social media, ceasing any and all communication there. This was deliberate. Though I'm more than willing to try and detail what exactly made me take this decision, it's been my experience in the past that people do better with a brief and generic explanation, so I'll just say this: things just couldn't go on the way they were going any more.

Call it an identity crisis. Call it dissociation. Call it an existential crisis. I don't honestly care too much what others call it. All that I know is that I'm at a point in my life where I had to make a decision. I just didn't know what I was choosing between. I still don't, really. With the sudden blossoming and developing of me as a respected, responsible adult at work I think it was enough to make me aware enough of everything that was wrong in my life.

There are two things which I have to decide about. One is regarding the mind, the other about the body. Essentially my identity as a person purely as an emotional and intellectual construct. Who I am, in short. After two decades of just utter confusion followed by a decade of psychological torture by physicians and psychologists, I simply cannot say any more.

The basics seem easy enough, I'm an intelligent (gifted) woman, with a mild obsession with cats and cute things in general. But that's just the framework. Who am I really? What do I like, what don't I like? There's the many things I do not like, which upset me, or which I even hate with a passion, but of which I am pretty sure that I would not feel about them that way if I didn't suffer from Post-Traumatic Stress Disorder (PTSD) as a result of those three decades. In how far is PTSD part of me as a person? In how far does it define me? Has it destroyed the 'real' me already since PTSD is a permanent, neurological change to the brain?

Those questions always transform into questions about the second thing where I have to make a decision. My body. The 'what am I' question. It's clear that I cannot just let things go on the way they are now forever. Or well, I could, but a life of chronic pain and the possibility of severe medical complications isn't really much of a choice, but mostly just plain suicide. Not a choice I'm opposed to on principle, but for the moment I would like to entertain the possibility that there is in fact a way that I can keep living and not be in pain.

As far as my body goes, the only non-lethal choice I have is to keep going to physicians and hope that the Next Time (tm) will be different. That I won't be sent away, ignored or ridiculed. That is assuming that I'm in fact not crazy and not imagining my abdomen bloating up, distending and hurting for weeks on end. That I am not imagining what could be a vagina being inflamed, irritated and causing significant amounts of pain and discomfort for weeks on end. That I don't imagine the throbbing, stabbing pain in my lower abdomen, mostly on the right side. That I am not imagining my right leg going partially numb for a few days. That I am not imagining my hips hurting like heck for at least a day or two every month.

The feeling of a complete disconnect there is what frustrates me the most, and which makes me realize so strongly that I don't seem to have much of a choice there. Keep doing the same thing over and over again for year after year, just like the past decade, in the hope of achieving a different result? I am pretty sure that's the informal definition of insanity.

So, while I can possibly assemble my actual identity together from bits and scraps from amidst the ruins of my life, it strongly seems that that as far as my body goes there's only the 'suicide' ending, i.e. doing nothing. Albeit in the faint hope that maybe the next time a physician examines me things will be different.

The only way I can actually live a life with that horrific knowledge is to push the fact away that I am intersex and that I am in pain. Much like I have been trying to do for the past decade, in other words. Only this time even more strongly. Even if it means erasing parts of my past, of my interactions with others and possible avenues of rescue from this 'suicide' option. While I figure all of that out I'll have to shrink down my interactions with others significantly. That means I won't be on social media any more, not for a long while. I probably won't be talking to many people at all or only sporadically.

I just need some time, if I can find some.