Wednesday, 5 December 2018

Gender dysphoria and body identity dysphoria

Back in early 2005 I found myself watching a documentary on Discovery Channel on the topic of body identity dysphoria (BID) [1]. It followed this young woman who spent much of her time looking for a surgeon who would amputate her legs. Not because she had any medical problems, but simply because it felt 'right' to her to not having legs. She could recall seeing this person in a wheelchair as a child, with that person having the same kind of amputation as she ended up seeking for herself years later.

Not long after watching that documentary I found myself dealing with first the suspicion of me being transgender, quickly followed by the growing realisation that I had to be intersex. The memories of watching those BID sufferers faded to the background, until recently, when I found myself considering BID again, this time in the context of gender dysphoria and similar disorders.

Briefly put, BID is the desire to have invasive surgery performed on one's body in order to amputate healthy body parts, or to lose parts of one's body's functionality. The source of this desire appears to be in the brain's view of the body, with the functionality or parts that are deemed undesirable falling outside of this mapping.

For BID sufferers amputation or induced paralysis appears to be the only real solution, as ethically convoluted this solution may be. This is similar to with gender dysphoria (GD), where those affected will describe a strong desire to have their genitals removed, along with many other characteristics of their body. So-called sex-reassignment surgery involves the removal of one's existing genitals, and the surgical creation of a facsimile approximation of the opposite sex's genitals.

In both cases the hope is that by giving in to the desire for surgical interference, the psychological suffering will cease, and the person can live a normal life again. In the case of BID, the suffering can increase to the point where the person will self-amputate. Both BID and GD are very real forms of suffering, without a clear solution, or cause.

Looking back on the past fourteen years that I spent dealing with my intersex condition, I can see the many choices that I had to make in order to find myself. Most strongly of all, I can see the weird medical attitude towards BID, GD and intersex cases.

With the first, there's little inclination by doctors to assist surgically. With the second it's becoming easier and easier to the point where even children can apply, and with the third 'normalisation' surgery is forced on unwilling intersex individuals - including infants - but actual medical help is not available.

I consider myself fortunate to not have any kind of dysphoria or medical disorder. Yet I'm not blind to the horrific irony that while BID and GD require intense psychological and medical attention and are met with guarded caution, the medical approach towards intersex is one of overly enthusiastic surgical intervention.

With intersex there's no protocol, real-life test, psychological evolution or the like. Nobody will weigh the ethics of chopping up the genitals of an intersex infant, or ask whether it's proper to subject an adult intersex person like myself to psychological pressure to undergo 'normalisation' surgery and to be repeatedly told that I am not capable of making decisions myself, that I should rely on the doctors.

With BID and GD individuals are born with a problem. With intersex individuals are born without a problem, but have problems created for them.

I wish all three groups could get the help that they need.



Monday, 26 November 2018

The future I want

Figuring out what life means to oneself is a big task, one which most people never really get around to finishing. One can just follow the well-trodden path in front of one, feeling okay about the whole deal. To then vanish without much of a trace, never having affected the world much.

For me such a thing has never worked. To me the world has always been filled with possibilities, infinite things to learn and endless ways to improve everything for everyone. All it takes is a little bit of elbow grease and a big imagination.

That's kind of how I ended up starting this new project this year, called the Internet of Plants [1]. Originally just a cute little project to automatically water single plants, it has since drawn in a number of people beyond myself, with the scope expanding to high-density indoor farming, using LED lighting and automated irrigation as well as hydroponics.

This project is now on the verge of setting up its first small-scale growing operation, using about five square meters of shelf space with the goal to grow everything from lettuce and herbs to strawberries, passion fruit and more. Long-term we want to look at reducing costs sufficiently to make it possible to economically grow staple foods like rice.

The reasoning behind this is that if high-density indoor farming were to become cheap enough, it'd mean that food production could move close to where people live, valuable farm land could be freed up and returned to nature, even as food transportation, insecticide and herbicide all become rare sights, with massive benefits to the environment.

With each indoor farming operation being a completely isolated and sterile environment, there would be no run-off of fertiliser and the like into the environment, and crops could be grown anywhere, any time, with minimal loss and other compromises.

What excites me about this project is that it is both very taxing on those working on it - combining fundamental R&D, biology, physics, engineering, electronics and many more disciplines into a single project - yet the potential pay-offs are likely to be massive.

Over the coming years we could slowly begin to change the world economy, resolve many causes of food scarcity and related issues, while providing the technology and documentation for it as a fully open project. Truly, it's not meant to make a buck off anyone, only to make the world a better place. Not just for ourselves, or me alone, but for everyone.

To protect the environment, give countless people a better, healthier life and ensure that humanity's future on this planet for the coming centuries has been ensured, while putting a stop to countless destructive practices, such as the environmental destruction of habitats for the creation of farmland.

To me, this is the kind of project that truly excites me. Something that has meaning far beyond me, a hackerspace, a company or the next board meeting. This is what I want to do with my life. These are the kind of projects that I want to work on, together with other like-minded individuals.

The sad thing there is that as the preceding blog posts over the past years have made abundantly clear, I cannot see a clear path to this future. Many times I have thought that I was close to a break-through that would get me out of my current predicament and get me that quiet, peaceful life in which I can focus on making this future a reality. Instead I am still forced to fight for my life, fearful of slumlords and yet another knock on the door from police officers or others to either misguidedly 'help' me or inflict more suffering.

I cannot really think of any future this way. Not when my mind is frozen in fear just thinking about what horrors tomorrow might bring. I could have gotten any of those jobs this year and things would have been different, but for some reason I didn't. Maybe it's that I am intersex or that I have PTSD that makes companies afraid of hiring me. Maybe it's just that my way of thinking is too different and unsuitable for just focusing on developing the next iPhone or cloud-based webservice, soon to be forgotten or never even relevant to most of the world's population.

Hopefully I can still find the path forward from here to that future. I think it would be cool, and I hope others agree with me on this. Though my one success this year was to get hired by Hackaday to write articles for them [2], it's sadly not the kind of job that easily pays all of the bills each month.

Perhaps such kind of (remote) jobs are the things that suit me best: jobs which require a lot of independence, responsibility and ability to wing things successfully. I just haven't figured out yet how to turn this realisation into a path forward.

As always, help is more than welcome.



Tuesday, 20 November 2018

Mental healthcare: madness within and without

A major part of me is still this five-year old child, lying curled up in that dark room, sobbing to themselves as the harsh, loud voices of those adults resonate in their ears. As the sensation of their hands groping, grasping and pulling on their body doesn't seem to want to fade.

It'll always be my fault. I'll always feel that I am the problem, that I just have to make things more difficult than they should be. How could I deny such an obvious fact?

Childhood abuse trauma is still special kind of madness. Left unacknowledged and untreated, it comes to define one's very existence as a child, as a teenager and finally as an adult. It means feeling unable to establish an emotional connection with others, as well as a general inability to rely upon and trust others.

It means struggling with a lack of self-esteem and of being overly critical of oneself. Of feeling that those adults back then were right to blame it on us, on somehow being responsible for the horrors that they inflicted upon us.

In my own situation, I wasn't aware of what had happened to be for the longest time. Not consciously, at least. It was always there, affecting my behaviour and life from right after those childhood events until the memories began flooding back, decades later.

It's horrible to see how much those events have changed me as a person, and affected my life. From turning that happy, carefree child into this withdrawn, quiet child who wouldn't even let their own mother touch or hug them, to the young adult and finally adult who simply could not get over what had happened. Who would remain stuck in that dark room, crying and feeling too terrified to move, let alone leave that room.

The events that happened after the initial traumatic events served to feed and reinforce it. From getting bullied during most of my time at school, to later having doctors and psychologists try to make me believe that I had to be transgender, or simply crazy, dismissing my intersex condition as an infantile fantasy.

Finally living together with an abusive flatmate for months with things totally spinning out of control at the end and losing all of my money and possessions. Months of being told how everything was my fault, how I wasn't doing enough and was weak and incompetent.

Then years of dealing with slumlords after moving to Germany, having them play the 'justice' system like a fiddle to make my life hell and drive me ever closer to either accepting homelessness or seeking to commit suicide once more. Of course everything is always my fault. It's pointless for me to hope for a better life, as me being alive makes things by definition worse. Such happy thought processes.

That last situation leading to me ending up at the psychiatric hospital for a few days recently. Not that this was the first encounter with mental healthcare, of course. I had seen plenty of this back in the Netherlands already, and had just stopped seeing my regular psychotherapist after one and a half years of weekly appointments, on account of this therapist constantly retriggering severe post-traumatic stress disorder triggers without seemingly understanding what was happening.

I'll be the first to admit that there's this madness inside my head that I keep struggling with, every day, with the darkness trying to claim my every thought and action. Some days there's too much darkness, because of other people's actions. Not because I want to feel like that.

Being at this closed, high-priority psychiatric ward was... a different kind of madness. While there, I was stripped of my identity, of any freedom and choice, while limited to this one, shared room and shared facilities. Shared with others who were struggling with their own madness and darkness.

There was the bossy woman, who seemed to be living some kind of fantasy, the tall guy who seemed to be mostly trapped inside his own head, always talking to himself and sometimes screaming for hours during the night. The girl with whom I shared the room had this massive burn on her left hand. It seemed like she could no longer use that hand, and was completely withdrawn into herself.

There were others. Each different. Each making me want to get away from that place. To return to the outside world, with the people whom I felt are more like me. Who show me the brighter parts of life. Not these shambling wrecks of human beings, who through no fault of their own are kept inside what is essentially a prison, where they are surrounded by the madness of others. Slowly forgetting what it is like outside, in society.

I am glad that I am no longer in that psychiatric hospital. For now. I hope I won't ever have to return there. But there are people here, outside the hospital's walls, who bring darkness. Who make one feel that life is about suffering and loss. That life maybe is too hard, that one cannot do it. That's it all too much, too painful.

I want to get away from this darkness. To get away from this current slumlord, to get that job, follow my dreams and ambitions, make more friends and hang out with the friends I have. To feel alive and happy.

Yet I fear that all there will be for me is the darkness of that silent room, with five-year old me lying on the floor. Alone, sobbing. Right before I give up for good.

I wish I could see the light.


Monday, 12 November 2018

Depression: the not so cute version of procrastination

A couple of days ago I watched this TED Talk video on procrastination. It covered the fine balance between the responsible side of one's ego and the part that is more interested in having a good time, the 'monkey'. Most of the talk was about how important it is to keep the monkey restrained, lest one ends up spending hours watching fun videos or browsing Wikipedia.

This made me think about how this all works for me. Those many days spent just aimlessly clicking around on the internet, working up the motivation to do anything, was that the monkey having fun instead of facing up to the obligations in life?

The thing there is that I did not and still do not have fun while fighting against this procrastination. It's more of a struggle, trying to get myself to a point where I can do anything at all, while feeling the weight of my existence and all that I'm failing at threatening to crush me.

The ironic thing there is that I have never been the type to procrastinate. As a child and teenager I was always working on big projects with seemingly endless energy. Then, starting with my parents divorcing and moving around the country that all began to change.

I still tried to continue projects within the limitations of losing access to the farm's resources and space, but as the pressure to resume studying or get a job increased, I abandoned most projects in favour of self-improvement projects, from driving lessons to figuring out my next steps in life. This mostly resulted in me slipping into a bad depression.

Cut off from the environment where I grew up, without any clear goals in life or how to start feeling happy again, I simply drifted along for a while until finding out about being intersex. To me that seemed like the key to solving a lot of issues and questions I had about myself. I would get medical help, get answers, maybe surgery or something, and things would work out.

Fourteen years later I still don't really have answers, and have many more questions than those with which I started. Worse, because of the treatment by doctors and psychologists, I now have severe Post-Traumatic Stress Disorder (PTSD). This is like depression times a thousand.

How does one keep motivated when one is beset by depression? When the expectation is that no matter what one does, it will just backfire? That everything which one attempts or does is futile? When one feels as if there's no point to one's existence, and it'd have been much better if one had never been born?

No monkey there, more like this black monster that sits on one's shoulder, discouraging and harassing one. Why even start that task when you know it's futile, or won't work anyway? Or maybe it's just that you know that you are incapable of doing it, or will just screw it up, or others will do a much better job, regardless of how many times you managed to pull off that same task with great success.

It's still procrastination, but unlike monkey-based procrastination here forcing and nudging the affected person will not help. Instead counteracting the black monster will have the best effect, by giving the person back their self-worth, their sense of reality and with it their reason to live.

It's not that we do not want to, it's more that we physically cannot, unless someone else gives us that little push and assists us so that we can get away from the black monster and with it the feeling of being incapacitated.


Monday, 29 October 2018

To let oneself be carried off by the current

Working long hours, rushing to make deadlines and still not feeling like one is getting anywhere. Going through job interview after job interview only to get rejected. Dealing with the crippling psychological impact of a looming eviction and the prospect of abandoning everything once more and resorting to the charity of others. That's my day to day life for months now.

Somewhere in the background is still the constant pains and discomfort of my body, even as it keeps going through physical changes, from the gradually vanishing scars and subtle changes to my face and skin in general, to the general development of female secondary characteristics. None of it explained, none of it making sense, no clue as to what will happen in the end. Is this just a normal puberty?

I can feel my sense of self, my ego, vanishing in the midst of this. My body is in flux, nothing around me in my environment is fixed or certain. I know what person I think I am, and what I want my future to look like, but all paths have been closed off, with no way forward. There's just waiting.

It feels so pointless to keep struggling, to wish for a better future. Even after so many years I have come little closer to my goals, or found a home.

Two weeks ago I found myself taken to the local psychiatric clinic by the police because my social worker was worried about me after a few remarks in an email I sent to her. I ended up staying two nights there, because they were afraid that I might hurt myself, or worse. I was let out during the day of the second day there, however, with the promise to return by dinner time. I was let out again on the third day, with the recommendation to visit a psychiatrist at their walk-in clinic.

Honestly, I do not want to hurt myself, or even end my own life, but this sense of pointlessness and futility is making me feel ever more disjointed from this body and my perception of reality. Thus I feel torn between the fun and interesting things in my life, the future I want to work towards to, and the strong desire to just give up and let all of those who wish me to vanish get their desire.

This body feels like a hindrance. I don't want to have to think about where to house it, how to feed and clothe it. How to deal with its changes and pains. Its mortality. I cannot comprehend human society. It all feels so wrong and distant, like a tune that's ever so slightly off-key.

There's still my third book to finish, a job to find, a home to find and move to. An eviction to avoid and chronic stress, PTSD and worrying abdominal pains to ignore. The question of whether this is possible at all doesn't apply, nor whether I still have the energy to continue. There's no choice, no freedom, no pity or empathy. Just the choice between continuing this struggle and giving up.

I'm still struggling and hoping, but it's so hard.


Sunday, 23 September 2018

To struggle for survival

What I want my life to look like in the short to medium term: to live somewhere quiet, work a day job to make money, write books and work on my software and hardware projects in my spare time. Finally get those robotics, AI, asynchronous CPU architecture and similar projects into a usable state. Have my autobiography published and hopefully change forever life for all intersex people around the world for the better.

Instead, where I am now: being thrown out of my current apartment despite having paid all my bills and not caused trouble. Not having a job despite many months of applying and flying all over the world for on-site interviews. Struggling to finish my current reference book within the deadlines as the full-time job search and dealing with depression and bouts of suicidal thoughts make it almost impossible to be productive.

Each day my situation feels more hopeless. The hope for an easy resolution to my situation has died months ago. With each new rejection after a job application or simply a lack of response it becomes ever more clear that my existence is optional and in no way required or essential.

But to survive is not about feeling comfortable. It's about still dragging yourself forward through the mud and freezing rain even after you have broken both legs, had an arm crushed, running a fever and almost delirious from the pain. All in the hope that things will get better if you keep going. For how long? Until you collapse and die.

While trying to find a job and with it the relocation help I seek, I am ignoring the worsening physical pains and warning signals by my body. At this point endometriosis seems almost certain, with peritonitis (inflammation of the lining of the abdominal wall) providing a clear explanation for the generalised abdominal pain and extreme abdominal swelling at the end of each monthly cycle. This in addition to the extreme and localised pain in the perineum around the same time, which would also be triggered by the blood and/or other fluids that get released.

Of course I have tried to find help for this during the past years, but without luck. And now the symptoms just keep getting worse, possibly also due to the stress that I'm under as a result of my current situation.

What will happen next? I do not know. I may get lucky and my wish for a more quiet, predictable life may come true next week after yet another on-site job interview. Or not, and I can keep struggling to somehow find that way out of this Hell. Yet I am terrified of this dark side, this voice that keeps pushing me to admit defeat, to give up and terminate this impossible existence.

Am I meant to exist? Hermaphroditic intersex people like myself are very rare, because most times embryos merge like that, a miscarriage results.

I don't even know what I am. Who I am. I'm still in the process of trying to make sense of this body of mine. Of what has happened so far. To somehow deal with the trauma of the past years, even as I try to move forward.

What's fair?

This is survival. There's nothing fair about surviving. It's when everything has gone wrong to the point where one's existence has practically been lost already.

I want to survive this. I want to move on, to move forward, but the deck is stacked against me. With the incredible physical and psychological pain combined, this makes it seem all too tempting to give up. That's my fear.

Like seven years ago, when I also found myself in a similar situation, I didn't know what to do and everything was hurting. That was when I remembered the two boxes of sleeping tablets which I had in my room. They were the only real way forward which I could see. I was so happy that I had found a solution. Something which I could do, instead of just letting things happen to me.

I slept really well after I realised this. The next morning I got up all cheerful and feeling extremely calm and at peace with everything. The pain and agony that I had been feeling inside for what seemed like years had all vanished. There was no hesitation as I took all of the tablets out of their packaging and swallowed all of them with some water.

I still feel that things should have ended there. Me having been born still feels like a mistake. Me not dying seven years ago feels like a mistake.

Yet I still want to live. I just want... no, what I need to live is for all of this pain to be taken away by others. The pain of being unwanted and unneeded, of being the cause of problems and just a collection of unfulfilled promises and regrets. For people to trust me, instead of seeking to betray and discard me. To accept that I have a traumatic past, but that things will be fine once I'm in safety.

If not, then there is no stack of sleeping tablets available to me. Yet the temptation remains. I don't know what may happen if this dark, traumatised part takes me over again. The point where I will have lost the fight to exist in society, in this life and also the fight against the traumas from my past.

Even as I prepare for yet another attempt next week to make this future I want work out, I notice how much my attitude has shifted over the past months. From feeling hopeful and quite certain that things will work out, to pessimistic and downcast in addition to feeling exhausted as I struggle to care about the fact that I am still alive. And still surviving.


Monday, 20 August 2018

Let's talk inclusivity in the tech industry

This year has been a weird one. After leaving my previous job at the end of last year I have undergone a number of medical procedures:

  • 3rd MRI scan at the neurologist for the cyclic weakness and pain in my right leg and arm.
  • appointments at the proctologist and gastroenterologist for the abdominal bloating and pains.
  • cycle monitoring and laproscopy surgery at the gynaecologist to gather data on my intersex condition.

Even after nearly fourteen years, I still know very little about my body, and finding specialists who got a clue and/or show interest is so hard that I envy those who are merely seeking for needles in haystacks. Currently I'm suffering more and more frequently from nausea during each cycle, though the sciatica (pain and weakness in my right leg) seems to have mostly gone away, indicating that things are changing.

After my body suddenly started undergoing its first proper puberty in 2015, with a dramatic increase in female secondary characteristics, it's been a confusing and harrowing time for me. I do not understand what is happening with my body, and how far it will keep developing like this, or whether there'll be any consequences of such a delayed puberty.

I know that my natural female hormone levels are pretty low for a woman, but adding additional hormones result in the symptoms of estrogen overdosing, so this is apparently the level my body is now comfortable with. I have also noticed old scars changing, wrinkles fading and of course the fat distribution in my body shifting around again, as if the hormone therapy I used to be on did just about almost nothing. Nothing about this makes any sense, and there's nothing in the literature that may help me with this. My best and only help so far seems to be one of those cycle tracking apps, allowing me to at least gather some data on the symptoms while giving me at least some useful hints and tips.

Oh, did I mention that I'm looking for a new job?

It's been eight months now since I started my search for a new job, and collected a few dozen rejection notes in that time. I'm supposed to have a new job by next month according to the lease extension I got for my current apartment, or I'm looking for a new place to stay. Worst case I'd be forced to return to the Netherlands without a job and no place to stay. After the 11 years of horror that I went through there, that's the last thing I want or can deal with.

I'm frantically working to catch up on the deadlines for my upcoming book on embedded C++ development, which I started on earlier this year. Fortunately my second book on C++ multithreading that came out last year is selling well. Combining writing a book with the job hunt and dealing with my medical condition is hard.

So, inclusivity.

It's a big word, which has been thrown around a lot the past years. Basically it means that everybody gets an equal opportunity, regardless of their circumstances. Sounds great, doesn't it?

Naturally, no employer who has rejected an application of mine has said why they did so, or gave any specific reasons. How would one even know whether one got rejected due to one's medical condition, circumstances of birth, or having opted to pursue medical help over a career?

I could be totally wrong about this, but at the same time I cannot exclude the possibility that after doing my best for months now to get hired, and having literally flown around the world for a multitude of on-site interviews, that in the end the primary reason why I do not get hired is because I'm an intersex individual. Someone who is open about it online, even.

Since I have no guarantee that this is not the case, and my professional experience should at least give me a fair shot at a job, it's sadly becoming a question which I and others are beginning to ask more frequently now.

Am I not getting a job because I am open about being an intersex person? Is the very fact that I'm intersex a factor in getting rejected from job applications?

It could just be that I have wasted all those years on not pursuing a career which is coming back to haunt me now, since employers do not like gaps in one's education-to-jobs timeline, but 'maybe' and 'possibly' aren't of much comfort here. With zero feedback from any job interview as a rule, one is left grasping in the dark for clues.

I like to think - and others confirm this - that I'm a highly dedicated person with a keen interest in science and technology, who is friendly and helpful, and more than willing to learn new skills for a project or job, while always being ready for a challenge.

It's hard to not feel like this is where inclusivity in the tech industry falls flat. Someone like me is different, yes. I have taken a course through life unlike what most people will ever experience in their entire life. Yet this should make me a unique asset to a team. Not a liability. Yet that's what it feels like.

Like I'm back in primary school, getting bullied and excluded for being 'different'. Ditto for my later school experiences and so on. Ironically those experiences taught me the value of communicating with others, even if it had to be initiated with one's fists. Some of those bullies actually became my friends later on. Yet back then I didn't know I was intersex, nor did anyone else. Being gifted was already enough of a struggle to deal with.

I got through all of those years. I got through the past thirteen years mostly unscathed, even when it seemed as if my body, doctors, psychologists and the rest of the world were all against me. There was always someone there who offered me that one chance to move on, which I accepted even if it meant more big changes and massive effort on my side.

I just wish someone would give me that chance now.