Monday 25 December 2017

Everything begins and ends with one's body

The moment that one is born and becomes conscious, the world begins.
The moment that one's body falters and dies, the world ends.
Everything in between is coloured by the health of one's body.


I remember how there was a time when I could walk without pain. I remember how I wasn't concerned every few minutes with new, interesting pains or the general state of my body. That seems all so long ago now. Part of a past in which there was still sunshine, a home and happiness. Not this bleak dystopian present with a faltering health and more hospital and ER visits than I care to remember.

Next month another three doctor visits have been scheduled, with my GP, neurologist and gynaecologist. My endocrinologist also asked to remain informed, along with a second gynaecologist. Next month is also planned full with psychotherapist appointments, with my second psychotherapist (and neurologist) likely wanting updates or maybe getting me some updates. I don't want to harbour hope that this time something will change. Yet it must.

After giving up on the contraceptive pill, ibuprofen and mostly on diclofenac, I have now found a temporary pain reprieve in CBD - cannabidiol, a cannabinoid extracted from cannabis. I'm slowly beginning to understand why medical marijuana is a thing. CBD manages to knock down the daily pains and numbness a few notches to where I can somewhat function and focus again. Yet it's not a solution.


The pain, sensitivity and numbness that used to just plague my right side has been gradually spreading to my left side as well. It doesn't go away in between monthly cycles any more either. I still don't know what causes it and how much internal damage I'm possibly suffering each day that it is not being treated.

Today is Christmas. Yet I'm not feeling very cheerful. Not when one has to confront such comforting thoughts such as this possibly being my last Christmas. With the enthusiasm doctors have shown for my case so far, I am not hopeful that they'll get to the right conclusion in time if what is happening to me turns out to be fatal. And even if it's not, I might end up paralysed or incapable of functioning any more without extreme painkillers, judging by how my situation has progressed so far.

Being in this much pain and discomfort, along with frequent nausea, dizziness, headaches and a near-complete lack of appetite make that just maintaining my body to keep to the status quo as much as possible is taking nearly all of my attention and energy.


Sure, I'm also supposed to find a new job, and I might get kicked out of this apartment soon, but first things first. If my body isn't doing well, then that makes everything else seem rather minor. It's amazing how intense pain refocuses one's priorities, I guess. If survival takes becoming homeless, then that's a price worth paying. I think. Yet being dead because one didn't prioritise one's body over everything else is also such a bummer.


For the coming months I pray that things somehow work out. That the doctors do take my condition seriously and that the cause of these pains and numbness is found and treated. That the new job thing works out and that I may even find a real home again in the process. That my daily life will no longer be darkened by having a faltering body.

Hoping for the kindness and understanding of others, I guess.


May the gods have mercy on my soul.


Maya

Tuesday 19 December 2017

I should focus on my health first, if I can

Last night I woke up a few times again with terrible pains in my abdomen, yet I was able to fall asleep again after the pain subsided. This morning I noticed that my abdomen is horribly distended again, making it look as if I'm quite a few months pregnant. Pulling in my stomach makes it look more or less normal, but the pain remains throughout my abdomen and lower back.

The entire day I'm feeling somewhat feverish and out of it. My left leg is also beginning to feel numb, with the typical pain in my left knee which I used to feel only in my right knee before. My left side is beginning to hurt more and more, the same way that my right side started hurting, years ago. I'm still trying to get through the day without painkillers, beyond the occasional ibuprofen or bit of diclofenac gel on my abdomen for when things get really bad.

Even then I feel completely drained at the end of the day from having to suffer through the frequent surges of pain, and the sensation of being ripped apart below whenever I go to the toilet.

I am so tired. I don't want this any more. I'm so sick of everything.

That's what I found myself proclaiming earlier as I got back from work. It's hard for me to properly realise when I'm tired, as I have been suffering through so much physical and psychological pain for over a decade now. It's become 'normal'. Yet there's still only so much pain my body and mind can take. And I'm completely through. Drained. Exhausted. Unable to give or take any more.


Earlier I found a letter in the mailbox about an appointment at the local job office to talk about my efforts to get a new job. It's hard not to start laughing hysterically at such a phrasing. I could easily accept one of the potential couple of job offers from headhunters. Finding a job I also want is harder, but not impossible given a bit of time. Yet more pressing is my current health.

Next month I also have an appointment scheduled with my GP, neurologist and gynaecologist, along with weekly appointments with my therapist. My hope is to get them to realise the seriousness of what is happening to my body at this point, along with the psychological pressure this creates.


When I can barely walk normally and increasingly find myself considering the possibility of needing a wheelchair at some point to get around, that's simply depressing. Makes one want to get up to one of those learned types and yell at them to finally help me. That kind of pressure.

Why should I even care about a job if my body isn't healthy? When I'm suffering every single day, both physically and mentally? Why could anyone demand such a thing of me?


I need to rest. To find stability in my life. Not to find myself chased from one more thing to muster the energy for to another one. To find myself risking embracing that dark part of myself which doesn't care about things like happiness, others or even life. That part which just wants to destroy and annihilate. Which rejoices in me hurting myself. Which enjoys watching me suffer, as it brings me closer every day to once again try to find that sense of incredible peace.

When I attempt to take my own life again after giving up on it. The intense, wonderful feeling of serenity.


...


I really want it so badly.


...


When I feel relaxed and at ease that dark voice subsides once more. I try to hold onto that feeling of hope and peace which involves me living a happy life and not taking my own life. Yet there's only so much which I can do. I need to avoid stress, but I can only do so much there.

Me getting laid off is horrible. Me having to face more of the eviction case is horrible. Me finding a new place to live is horrible. Me finding a new job is horrible. Me losing more and more things which I thought i wouldn't have to give up is horrible. So much stress. So much pain I have to shield myself from. To numb myself and pretend it really doesn't hurt so much.

Until it does and I find myself helpless again against the intense pain and suffering. To feel tempted to embrace that sensation of being powerless. To accept the inevitability of me failing to pull through this one.


I need help. Badly. Lots of help.


Else I will die.


I still don't want to die.

Yet I'm so tired... and everything hurts so much...


Maya

Sunday 17 December 2017

I must find that exceptionally challenging and rewarding job

I must. That's pretty much the summary of everything that is going on for me at this point.

For the chronic pains for which I must find medical help. For the worrying appearance of blood in my stool accompanied by the sensation of something rupturing inside my abdomen, for which I must also seek medical help. For the flaring up of my post-traumatic stress disorder and dissociative identity disorder-like symptoms as a result of the increasing stress I also must find more help and support.

For having been laid off from my job I must find a new job. For being jobless I will have to deal with the job centre starting next month and have to apply to at least so many jobs each month, or lose the welfare money. For being jobless I must find a job within a year or face deportation back to the Netherlands.

For fixing the apartment and eviction situation I must at least find a new place, for which I must first find a job. To rent or buy a new place, I must have a job.


All of this leaves me jobless, with chronic pain and psychological disorders which prevent me from functioning 'normally'.


I must fix it somehow. By myself. Even if it's impossible. Again I feel angry at myself for having wasted so many years on my intersex condition and backwards doctors without a shred of sympathy. I should have ignored it. Made a much more successful career. Then died in my 30s from sepsis anyway. Bugger.

It often doesn't feel as if there's any point to me fighting for myself any longer. It's just the same pattern every time. Few steps forward, then get kicked back to a worse position than before.


I realise that I could just settle for working a menial job at a dull company, but in that case I would have made it at my current employer as well, writing JavaScript or Java code until my brain started dribbling out of my ears from sheer boredom. I know that this won't ever work.

Ideally I would get a job in a more R&D position involving low-level software and hardware development. Working on interesting new technologies which will make the lives of everyone better. Something that can actually hold my attention. I already had to thank for a potential job offer this week because it'd just involve writing casual games (albeit in C++) all the time. I could do it, but would get distracted over time. That's what I learned about how my mind works.


My curse always seems to have been that I could never be 'just like others'. Not with my biological sex (hermaphroditic intersex), not with being just left- or right-handed (ambidextrous), not with my perception of taste (super-taster), or the way that I learn (100% visual-spatial learner, gifted & auto-didactic). None of this is my fault, all of this I was simply born with. Yet to then fit in regular society? Forget it. Been there, tried it, failed miserably, tried again and again until I finally learned that lesson.

I don't think that I would be happy in any other job than one which would challenge me intellectually and which appreciates me for being different. I guess I must keep looking... but I also hope that such a company is also looking for someone like me, and may stumble over my profile somewhere.

Can't hurt to hope, just to have that hope crushed, I guess.


Here's to that never-ending source of hope.


Maya

Thursday 30 November 2017

Not a man. Not a woman. Always someone else's problem

The past weeks my therapist and I have been playing a little game, involving him suggesting gynaecologists and other places to contact for possible help with my increasing monthly pains, numbness and general discomfort. I then contact those places to get told that they cannot help me, but wishing me good luck. Or not responding at all. Or like earlier that they don't have room for more non-privately insured patients, but please try again next year or so.


That's basically the past thirteen years in a nutshell: me trying new places, following suggestions and getting disappointed over and over. With only super-rare exceptions. At this point I am not convinced that there is any point to me continuing to play this game. At least not trying to keep up the pretence that I will ever be treated like a biological woman - despite mostly being one - and that the only 'help' there exists for intersex people is the utter brutality of 'normalisation surgery', the euphemistic term for genital mutilation.

I actually managed to lie to myself this time, actually convincing myself that this time it might be different. Yet nothing again. Maybe there will be an open spot for me next year. But what are the chances that I won't just be served a 'sorry, I can't help you' from the gynaecologist with the very first appointment? Won't be the first time. I am convinced that trying this 'solution' over and over again is insane and pointless.

What I have left at this point is to wait and see what the neurologist says regarding the worsening numbness and pain in the right side of my body, with the extreme use of painkillers in order for me to live a somewhat normal life. Kind of. Not really. Maybe the neurologist will order more tests and they will finally get down to the cause. At least at the neurologist it's not nearly as important as what one's biological sex is. We're all wired mostly the same, and causes of pain and numbness tend to be similar.

I can move without too much pain most of the time after taking an ibuprofen, or dosing up on diclofenac gel, yet I have to use both practically without pause at this point. Without either I cannot get through most days, or not wake up from the pain. I absolutely do not like using painkillers, but increasingly I am faced without any other option.


Yesterday for example I was doing okay, up till the point where suddenly the right side of my abdomen started hurting severely, along with a burning sensation in the vaginal area. What happened? I don't know. It didn't go away on its own after suffering through it for a while, but did when I took an ibuprofen. Today much the same.

I don't know what's happening, and am powerless to find out answers, let alone do anything about it.


At this point I am trying to manage a new job, worrying about my health and facing the prospect of finding a new place to live. Which is more important? How much time can I afford to spend on either? A home is irrelevant until I get a job first and know where I'll be moving to. Is my health more important than an income? I would say it is. Yet if one isn't healthy, one cannot hold a job, or even get one.

It appears that there is no right answer. Just an impossible balancing act.


Maya

Thursday 23 November 2017

Wanting happiness for all, yet not even coming close

Today was the inspection in the eviction case at the apartment. Maybe it was mostly the sneering and character assassination attempts by the lawyer of the landlady, but the impact of the experience was quite literally soul-draining.

Even though the heating system did exactly what was expected of it - ticking loudly and happily when turned on - the water wasn't as brown as it could have been because I had flushed the system a few days ago because I wanted to take a shower. Ultimately I had to give up on that attempt and shower at the office instead. It's amazing how much better a shower works if it's not done with rusty water.

The court had somehow mangled the part about the windows having gaps, instead focusing on the gaps in the structure above the windows, which got sealed last year. As a result that complaint is not being taken further at this point, and instead the waiting is now for an independent laboratory to be contacted, who will sample the water at the apartment and determine its toxicity to human life. This will likely not not take place until well into next year.


It's disappointing that it will take longer yet again, with every chance that this experience will end up costing me many thousands of Euros, on top of what I have already had to spend on lawyer and other costs. On the other side, I could have accepted a settlement and been forced to move to another place, only to lose my job shortly after and likely relocate again. Then there's the issue of my PTSD and other traumas which I'm still working through.

On one point I was at least absolutely correct: as I have talked about with my therapist and others on various occasions, this whole eviction thing is essentially the same as what happened to me as a child, when adults decided to take advantage of me. Here, too, am I left to obey whatever the court and lawyers demand from me. I can only hope that they won't hurt me too much.

After this morning's experience I was left feeling extremely depressed, feeling as if life had lost all its meaning. That I would soon lose everything again. End up homeless and without possessions or money on the streets.

It's hard to fight back against this darkness. I still do not understand why such horrible stuff keeps happening to me. From doctors lying to me, to adults abusing me, to facing one lawsuit after another for things which I have not done or cannot possibly be considered responsible for. It feels as though I am cursed. This makes it often very hard to see a way forward.


There's this future that I can picture, which gives me hope. In this future I got hired by the branch of this international company here in the city at which I applied. I would live in a house in the countryside, and travel by car to my job, but also doing a lot of home office and gladly take up vacation days simply because I like being... home.

It's a possible future, one which sadly also relies on others. Soon I may not just find myself without a job, but also without a place to live. Worse, I may may not be able to find a way out of this darkness, as all those horrible things just keep happening to me, along with the chronic pain in my abdomen and right side. The darkness feeds on pain and misery, worsening both in the process.


I want others to be happy. I want to be happy myself. Yet what I see is I'm not happy and neither are many others around me. Not even this landlady, or her lawyer. They're carriers of misery. Unhappy human beings who just bring more misery to others, whether they deserved it or not.

For as long as I can remember, I have wanted to work on inventions and technologies that would make others happy. Because that makes me happy. Because of all the discoveries I would make and the things that I would learn along the way.

That this is being made impossible because I'm simply not capable of finding a place in life where I would feel at ease and motivated enough to do those things is perhaps the most unfair thing of all. I'm so sick of dealing with miserable people all the time. Life isn't hard. People make life hard. People can make life easy.


Maya

Tuesday 21 November 2017

A biological woman who can find no gynaecologist to help her

Years ago I thought that I would never need a gynaecologist. That was back when I still assumed that I did not have ovaries and such, figuring that I had the luxury of stable hormone levels courtesy of hormone therapy. In that regard I was not much different from a transgender person. My assumption was that I would have to take those hormones for the rest of my life.

Then 2015 started off and with it my body began to undergo physical changes. From the appearance of linea nigra on my abdomen to increasing monthly pains and more. That's when I learned that I do in fact have ovaries. Since that time I have found myself increasingly struggling with the negative symptoms that these changes brought with them.

The past days I found myself waking up basically to pain. As the monthly cycle kicks in anew, the pain in the middle of my abdomen - just below the navel - can be felt, adding to the pain in the right side of my body that doesn't seem to go away any more. My right hip and side are a constant source of pain. I haven't been able to sleep on my right side without liberal application of painkillers for months now. My right leg feels numb, and all the time my right ankle and feet feel as if they are actually broken or injured.


As at this point I have given up on the ridiculous thought that there might actually be a medical specialist with a clue about intersex, let alone who is interested in anything more than eradicating intersex from the face of the earth through forced surgery. That just leaves me with trying to find a gynaecologist willing to take me on as a patient.

Since my problems seem to be caused by the female parts of my anatomy, that would seem like a reasonable course of action. Yet after years of trying it seems that it's irrelevant that I'm essentially biologically female. Me being in increasingly more pain seems to be of no real concern either. I seem to be facing the prospect of more severe abdominal pain and the gradual loss of sensation and increase of pain in at least my right leg and arm. My last attempt last week to contact a gynaecologist also ended with me getting rebuffed but offered 'good luck'. I'm sure that'll help.


What am I to do? Is there anything that I can do?


I'm regularly maxing out the daily allowed amounts of ibuprofen and diclofenac painkillers, just so that I can get through the day, and even then I often find myself flinching in sudden flashes of pain, or only realise how bad the pain still is when I allow myself to relax a bit and I notice how incredibly worn out I am of tolerating the constant pain.

At this point I cannot even afford to do anything but fight this pain with painkillers, as my physical health is basically irrelevant next to the current issues of finding a new job, finding and moving into a new place, and also dealing with the eviction case. This week the latter continues with an official inspection. Next week I have an appointment at the Dutch embassy in Bern to have my passport renewed. Neither of which allow me to be sick.


Thus with my current schedule I can but ignore the pain and pray that nothing disastrous is going to happen that will make it impossible for me to walk and otherwise attend to those priorities. I would be eternally grateful if someone could help me out with finding that gynaecologist who isn't afraid of a more unusual case like mine, but I'm not very hopeful there.

It's one of those areas where society makes it abundantly clear that I'm not a proper woman and also not really a proper human. It feels like society tolerates me more than anything, just like how I tolerate these physical pains because I have no other choice.


I wish things could be different.


Maya

Tuesday 14 November 2017

The countless branches of the future

Today I signed the form that terminates my current employment contract effective end of this year. Tomorrow I'll be registering as officially looking for a job, to ensure that I'll receive a monthly amount in the case that I haven't found alternate employment by the beginning of next year. How things will go from here is something that's basically up to however is judging my job application at those businesses where I applied at.

One company at which I applied and which is also based here in the city would be a natural fit, as they are looking for a senior C++ developer, with experience in automotive technology, both of which applies to me. Ideally I'd be invited to a job interview there, ace it, and get a job offer. That'd immediately end most of my current uncertainty and allow me to breathe a sigh of relief that my income is secure, I dodged months of bureaucracy at the jobs office, and I'd be working at a company of which I know that it's good for its employees.

In an alternate reality, I would fail the job interview, or not even receive an invitation. Ditto for the other companies where I applied at. The search for a new job would drag on, even as the deadline for welfare would draw closer. Moving to a new place would be the least of my concerns. This is the future where I would become increasingly more unhappy and depressed. Even with intensive psychotherapy this would be my definition of 'hell'.

There are many more futures imaginable, and it's impossible to tell what will happen these coming weeks and months. It's also pointless, as things will happen the way they happen, and all you can do is do your best every single day.

Of course there's a lot weighing in my favour, including my current resume (as found on my personal site) and my general level of experience. That gives me at least some comfort. But no certainty. That will have to come from others. All I can do is wait.


And regardless of what happens next, there will forever be the memories of my old employer. The offices I worked out, and some of the great people who I'll sorely miss. The memories of games we played together, whether billiard, Playstation 2 or GameCube games. The save files still stored on those systems for games which I'll never finish there. Projects which I was involved in for improving the office which now suddenly have lost all relevance to me.

I hope that soon I can make new awesome memories at a new company.


Maya

Saturday 11 November 2017

A dream or being awake: same difference

I was on my way to my family doctor to make an appointment. Making my way through the hallways of what looked like those of a sci-fi-looking space station, I could see the GP office's entrance when I made the discovery that I could feel something weird in my groin. A quick check revealed that my testicles had regrown. This made me feel both unsettled and happy, as though unexpected, it would help me make the point towards the doctor that my body was doing weird stuff and that I would need help, stat.

Sitting myself down at a nearby table with the laptop which I was carrying with me, a waitress commented how great it was that one can look up information everywhere these days. I was readying to investigate what Google et al. would have to say about this phenomenon of organs which had been removed before suddenly regrowing by themselves. Then the scene shifted.

I was in a similar location as before, but with more large windows, with light pouring in. Some other people were there. I talked with one of them about a package that was lying in front of him on the table. It turned out to contain a brand-new Commodore 64, which he didn't want any more because it used the newer type of power plug. I said that I would gladly have it.

I was lying in my bed, suppressing feelings of terror and general fear and discomfort at the thought of all that is coming my way the coming weeks. Whether I'll be okay. Also the realisation of needing to sleep more. That sleep is essential if I want to get through those weeks at all.

I was walking through this shopping mall, admiring the fruit and vegetables that was put out. After a bit of walking I came to what seemed like a real-life demo for a video game. It had me walking into this room that had like a hill in it, everything with a slightly purple tint to it. Walking up the steps carved into the side of the hill, I got to a section with a wall that I could walk in front of. Walking to the right side, there was a section of the wall that I could take off, with a carving of a goat.

Next to this carving was a bit of netting stuck across the opening of a cave, inside of which I could hear a goat. Tearing the netting away allowed the goat and another animal that was inside to get out.

I was lying in my bed, nursing bad pains and numbness on the right side of my body. Getting out of the bed, I got some diclofenac gel to put on the worst part the pain, namely on my right hip. I noticed that I could barely walk from the pain, and was on the verge of crying because the pain was so bad.

After making breakfast and taking an ibuprofen I began to feel better. Donning headphones to block out any environmental noises helped even more. I'm assuming that I am awake at this point. Not because I'm typing this, but because I'm feeling cold and uncomfortable. I cannot recall ever having felt that in a dream.

Dreams are better, I think.


Maya

Friday 10 November 2017

Take it one day at a time

It's all too easy to get overwhelmed by life. With medical, job and other issues piling up it quickly feels as if it's too much to all handle. Most of this feeling is caused by trying to look too far ahead. One cannot predict what things will be like a month from now, or one week, or tomorrow, for that matter.

Yesterday was a rather interesting day. I suddenly got a request for an interview by a journalist for USA Today, about the third gender thing in Germany [1]. It pleases me that journalist are still able to find me. Sometimes it's easy to feel invisible as an intersex person. Today I discussed the topic of my medical situation with my therapist along with the issue of finding a gynaecologist who might be able to deal with a situation like mine.

So far I have tried to contact a few people who might know a gynaecologist like this, but received no response yet. The suggestion of contacting the hospital directly doesn't seem to be an option, as one needs a referral from a gynaecologist. Catch-22 there. I guess this is one situation where it would be so incredibly much easier to be jusst a regular woman, I guess. Any tips would be most welcome here.


I also sent out a couple more emails along with my resume to a number of companies yesterday. Today I received a response from one of them (Microchip), informing me that they have received my application and will handle it as soon as possible. I'm hopeful that I'll soon be asked to come in for a job interview. Based on my interest in both hardware and software development, I think that such a company might be a good fit for me.

Beyond all of this all I can do is do my best the coming weeks. Do my best at my current job finishing up the climate control automation project and documenting it fully. Receive this engineer the end of this month along with my lawyer as my apartment is inspected for the claimed defects in the eviction case. Go to Bern, Switzerland a few days later to apply for an extension to my Dutch passport at the embassy there so that I'm set on that point until 2027.

Then wait to see what gets concluded in the eviction case, see how those job applications work out and hopefully get both sorted in a positive way. Find a new place to live around here, or maybe relocate to elsewhere in Germany or another country. At this point it's impossible to say which way things will go, or what my life will look like one, two, or three months from now. Whether I'll finally live in a place which I like and feel more comfortable in my skin.

Got to wait and see. Even if the waiting almost feels impossible.


Maya


[1] https://www.usatoday.com/story/news/world/2017/11/08/germany-must-allow-third-gender-option-registry-births-court-rules/843799001/

Tuesday 7 November 2017

Monsters inside your own head

I have always felt drawn to video games such as Silent Hill, Fatal Frame and films and series such as Neon Genesis Evangelion, Saishuuheiki Kanojo, Interlude, Kanon and Zegapain. Not so much for the horror, survival or action aspects, but mostly for the general theme of uncovering the truth through a haze of delusions, lies and deceptions. A journey which will inevitably lead to the harshest of realities.

Maybe it's because my life has felt like it carries a similar theme. From discovering that everything that I thought I knew about my body was a lie, to finding out the horrible truth about what was supposed to have been a care-free childhood. It makes one wonder how one can so successfully and fully deceive oneself. Or rather, how one's mind manages this.


Everything we experience is merely an interpretation, filtered through our memories, past experiences and biases. What I am finding is that I never managed to actually grow up. Intellectually, sure, but emotionally I never did. There was just this terrified child, shivering and trembling in that silent, dark room, always trying to forget the feeling of those hands groping around its body. Never more than that child.

But one has to grow up one day. One just has to find a way to stop being that child. To give those absolute horrors that were inflicted upon an innocent life a place. To accept that one's life did not end there, in that room. To banish those monsters, that darkness that feeds upon one's fears and terrors.


To accept reality, no matter how harsh. There is no escape. There is only the truth.


Embrace it. Accept the pain. Tolerate the suffering. Life is pain, suffering, agony, hatred and rage. Life is gentleness, a caring gesture... love?


To see the whole of reality. Of life. Of death. Of darkness and light, and the inevitability that comes with it. Joyful laughter drowned in screams of agony. A colourful flower blooming on a fresh grave. A birth. A wedding. A funeral. All gone in the blink of an eye, to start anew again, and again. The insignificance of a single life, and yet the incomprehensible preciousness of one. Until the universe ceases to be and everything is gone.


Is reality too much for a single mind to take in? Perhaps. Perhaps not. Only one way to find out. Beyond that silent, dark room. Beyond this body. Beyond this life. There is so much out there. So much time has passed and so much time will pass again.


Just hampered by those dark monsters inside our minds. Monsters that make us feel small, weak and insignificant. Which makes us prey on others for our own gain. Monsters which trap us in the darkest periods of our forgotten past.

One must fight back.


Maya

Sunday 5 November 2017

Chronic pain and exhaustion as excuses for procrastination

When I wrote my earlier blog post today, I was in a considerable amount of physical pain, with my right side hurting in an intense fashion. Currently just my right arm hurts, there's a numbed burning sensation in my right side and that's about it. While writing that earlier blog post the pain was much more intense.

I'm not sure whether it's just the pain that's making me sleep so incredibly poorly for months now. Using the bracelet that I'm wearing I can monitor how restful my sleep likely is. There I see that most nights I wake up repeatedly or at least am incredibly restless, without any recollection of this. By the time I wake up I'm feeling drained, exhausted and just want to get some sleep.

Most days I can force myself to get out of bed, get dressed and go to work and such, but I cannot remember the last time that I actually woke up feeling well-rested and energetic. Even after getting a solid seven hours of sleep in.

During the day will also suffer from these pains. They're distracting and drain my energy. As a result my ability to focus on things like work or projects has become ever more limited over the past years. Basically normally one would start with a full charge after a night's sleep, but for me it usually feels like there's no more than 10 or 15 percent available.


Then there's the effect sleeping poorly and stress in general have on psychological trauma and kin. When I'm exhausted I have almost no defence against anything negative. It feeds depression and negative thoughts, which in turn make one sleep worse again, and so on.

I'm currently not feeling the intense pain and agony as I did when I wrote today's first blog post. I'm still feeling decidedly depressed and anything but happy, but beyond a headache and a head that feels as if it's stuffed full with cotton, I'm otherwise more or less okay. Just really tired.

While talking with a number of people today who responded to the blog post, it was made clear that they do not think that I'm doing so poorly at this point. Walking in another person's shoes and all that, I guess. I'm still trying to figure out how much of my problems are just inside my own head. I know that some parts are not rational, such as my intense fear and distrust of others and feeling of being useless and worth absolutely nothing.

Trying to convince myself to beg others to maybe accept me for a job might take a while at this rate. There are so many options, so many companies and so many positions out there. I don't know what might be best or what to try, or what would work or what not. Yet this is still simple next to the Hell of real-estate, I guess. There one doesn't even have to begin to pretend that one can trust others there.


I should be fighting for my place in this world, but I'm so tired, and every time I close my eyes I see and feel those same nightmares again, of how people abused and hurt me.

If someone stood up and guided me through this process it might be easy, I guess. It should be easy for me, but everything out there seems to be aimed at overwhelming and/or demotivating a person.

One friend suggested that maybe I should move into academics. To that I replied that I could maybe see myself doing that, but that I would prefer R&D. Something science-like and gritty, with scary mathematics and horrific implications if one gets some detail wrong. That would be challenging.

Yet try finding something like that. Everything just has to be exceedingly dull, it seems. Sometimes it feels as if society is designed to drive people towards a depression from the sheer boredom.


I like things which can be reasoned and are logical. Things where one can see from the beginning which steps are roughly needed and where one knows what works. Things like a job and a home on the other hand seem like working on a project where you have to select from fifty-million different suppliers, most of which will deliver a sub-par product, yet there's no way to figure this out beforehand. I'd rage-quit such a project because it would be ridiculous.


I guess next week I'll talk things over with my therapist. See what his thoughts are. Maybe I'm truly just whining and it's all in my head. Maybe I'm the problem, or at least a significant part of it. Yet at this point nothing makes sense to me yet, let alone which steps would make sense. All of which feed into this depression and so on. Darnit.

*Hits the reset button on her life*


Maya

My one big mistake was to ask for help

The one simple truth about human society is that everybody is expected to just take whatever they get thrown at them. Wasn't born into a rich family? Your problem. Born blind or crippled? Your own burden to bear. Got severe psychological traumas as a result of fighting in a war, getting abused and so on? Tough luck.

If you can't make it on your own, then at least have the courtesy to not bother others with it. If you rid the world of your inconveniences, then so much the better. The thing about mental health and suicide is that nobody talks about it because the former is a personal issue and the latter an acceptable solution to society as a whole. Or so the subconscious and sometimes explicit reasoning goes.

Why waste money on those who cannot help themselves, after all?


In hindsight I was completely and utterly naive to expect to receive help from doctors and psychologists when I first asked for it, now nearly thirteen years ago. My intersex condition was just an ego thing. I should have kept it to myself. It didn't bother me too much, beyond the questions I had about who and what I truly was.

I shouldn't have started that fight. I should have saved that energy and time to work on what truly matters in life: survival. Getting a job, keeping the money flowing so that you can purchase property. Instead I wasted all that time caring about useless things such as my identity and self-worth, only to have both and along with it my mental and physical health trashed.

Now that I have to fight for a new job and a place to live, I am not capable of doing either. My energy has been spent. I'm too hurt and injured to continue fighting. It's just all more of the same. Yet a job is at least manageable. Without a sense of self-worth and the burden of critical thought finding a place to live is easy too. Just need to save your strength to focus on the acquisition of property and wealth.


Instead I focused on the luxuries in life, including figuring out my identity and the physical configuration of my body. In hindsight it might have been so much easier to just ignore my misgivings and stuck with the 'male' label, embracing the binary society. Survival first, and all that.

I made this mistake and now I'm paying for it. My failed suicide attempt a few years ago should have been a warning to myself, that I had to change things, but I stubbornly refused to just give up on those delusions. Having the courts actually agree to the assessment that I'm a hermaphrodite and not male must have emboldened me.

At this point my health is deteriorating without any prospect of medical help, I live in a hell hole of an apartment without the energy to change anything about this, and I'll soon be out of a job.

The only responses which I'm expecting to this situation are variations on 'I'll pray for you/I hope it works out', 'Here's a list of houses/jobs you do not have the energy/self-worth to look at' and my absolute favourite: 'Suicide is never the answer'. Oh yes, it surely is. For both sides, even.


The past days have been a complete struggle for me to continue living. This morning was the worst so far, putting me right back where I was just over six years ago during the final weeks before my suicide attempt. The same sense of devastation, of not seeing a way out, of feeling overwhelmed by life and the demands being placed on me. Those sudden glimpses and insights into that wonderful feeling of peace and warmth that I felt before I took the final steps which should have ended my life back then.

I gambled that things which would work out for me if I just got that identity and intersex issue resolved, but what should have take a few years, tops, turned into a decade and soon thirteen years. I gambled and lost.


I do not know how I'll get through the coming weeks, or months. It's quite possible that I will not make it. I'm not fully in control of my thoughts, or my body for that matter. Likely it's this dissociation, this DID, which keeps impulsively trying to harm this body of mine. Fun things like my hands trying to strangle me and me fighting back even as I'm choking. Or deflecting a knife that's headed for my abdomen, because there was this sudden impulsive thought that made me go from cutting up vegetables to trying to gut myself.

Well, I say 'me', but it's not 'me'. I feel fragmented. There's me and many other identities fighting for control. And this 'me' is losing. I wouldn't be surprised if I start suffering more blackouts the coming time.

Yes, I'm having major issues. Yes, it would probably be best if I put an end to it. Cull the weak. Not bleat for help that will not ever come.


It's gone on for far too long already.


Maya

Saturday 4 November 2017

Adding 'losing my job' to my list of problems

It's been nearly four years since I moved to Germany, after taking on an invitation from the employer for whom I had been working remotely for months as a freelancer. They would offer to help me find a place to rent and eventually I got a permanent contract with them. Although the medical drama surrounding my intersex condition followed me from the Netherlands - worsening in the process - and I no longer believe that there's a home for me to be found in Germany even ignoring the current eviction case, I figured that at least I had a stable job. Until this week, that is.

I was originally hired as an iOS (mobile) developer, programming apps in Objective-C, and later doing Java-based programming for Android and servers, followed by a few years of doing an embedded C++ project. Throughout these years, the diversity of incoming projects from customers dwindled. First we stopped doing mobile apps, then the Java aspect vanished, leaving only the embedded JavaScript apps which one of our customers seems to prefer. Whether it's simply that being a JavaScript developer isn't my thing, or that the team communication didn't work out, fact of the matter is that I got told that they no longer see a future for me at the company.

I have been told to finish up the internal project that I headed involving IoT and the automating of room monitoring, controlling of AC units and the like, documenting it to a state where others can work with it. They will however help me find a new place to live, considering the impossibility of me staying much longer at my current apartment, even if I do win the eviction case. I'm expected to find alternative employment in the meantime.


While updating my resume, it somewhat pleases me that I have a lot of items to add to it. From the two books that I have written and which got published since 2014, to the designing of a custom PCB (printed circuit board) for a custom room monitoring and AC controller device [1] of which one is currently installed at the office and in active use. There's also my extensive embedded C/C++ experience with the ESP8266 SoC system and the MQTT protocol along with TLS encryption that I picked up along the way.

My resume says that I'm a capable person, with great interest in a wide variety of fields. Someone who is able to learn and acquire new skills rapidly and successfully execute complex projects that mix hardware and software design. That's all good, for sure. That's not the aspect which worries me.


Psychologically I'm not in a good place, currently. The weekly psychotherapist sessions which I have had for the past months have helped in some ways, but as uncovering those traumatic memories from my early childhood are also part of those sessions, it is also doing me absolutely no service at this point. As I dig through what feels like years of repressed memories, of people hurting and abusing me, it's very hard to not see it in context with today's events. Basically the whole 'trusting people' thing when one's earliest memories are of such utter betrayal by adults. It's not a step which I can take, yet.

Meanwhile there's the issue of my physical health. For years my intersex condition seemed to be something which was just relevant to my sense of self and as a somewhat academic pursuit for answers. Since 2014 it's now primarily about my deteriorating health, with severe abdominal pain, numbness and pain in my right appendages and other issues, yet so far without answers on why this is happening, or how it will develop the coming years, aside from becoming increasingly more agonising. So far medical help is still practically absent, despite thirteen years of searching. Having less stress is essential here at least.

As mentioned, the current apartment where I live is not a good place. Nor can I stay here much longer. What people usually do not understand here is that searching for a new place to live makes me feel suicidal. Has done so for more than five years now, probably due to a number of underlying traumas. I cannot do anything to help myself here. Not without risking killing myself, weird as it may sound. Likely the negative impact it has on my already low sense of self-worth is what kills it for me, if you'll excuse the pun.

I do however need to find an actual home. Because I cannot stay here regardless of the outcome of the eviction case (you try to talk reason with a landlord after they failed to evict you on false charges). Also because this place is not healthy for me. I'm one of those unlucky souls who seem to have all their senses cranked up to 11, which makes us hyper-sensitive to noise, movement, smells, touch, etc. From tags in clothes, to hearing everything from upstairs neighbours, to a noisy clock or heating system, or watching someone make repeated movements such as dangling a leg, there are some things which we cannot ignore.

Most people can ignore those noises, the sharp edges of clothing tags, people dangling their leg or similar, or strong smells, but for us that's not an option. It's like the noise or smell is inside your very head as a physical object, causing pain and discomfort. The only way to deal with it is to move away from the source. Or in the case of noise opt for headphones and earplugs. Which kind of work, within limits. I can still hear the ticking of the heating system here while wearing headphones when the music or video's audio is a bit quiet. It disturbs me.

Finally, there is the dawning realisation that I'm not just dealing with post-traumatic stress disorder (PTSD), but likely also with something akin to a dissociative identity disorder (DID, formerly known as a multiple personality disorder [2]). There are those weird moments of amnesia which have plagued me since I was a child, including when I was supposed to have beaten up this one bully, of which I cannot remember a single thing. Current feedback from others also lead me to believe that I'm still suffering from DID-induced amnesia. Likely removing most of the stress from my life should help considerably with this, however.


What is abundantly clear to me is that I have reached a point where many things will have to change, fast. Also that I am highly dependent on the help from others. To find a home, a job, and a life which brings me peace. A life in which I can be that skilled developer and engineer which my resume promises that I will be.

One thing which I arranged yesterday was an appointment at the Dutch embassy in Bern, Switzerland to have my passport renewed. What I have realised is that I would absolutely not be opposed to taking on an offer of employment in another country if it was accompanied by support for relocation. To enable this option having a valid passport is essential. This is something which I can do. Something which I have control over.

I will be updating the resume on my personal site [3] this weekend. I hope that this suffices for others to help me. To give me that chance at a real life.

Thank you.


Maya


[1] https://hackaday.io/project/27548-wifi-ac-controller
[2] https://en.wikipedia.org/wiki/Dissociative_identity_disorder
[3] http://mayaposch.com/cv.php

Wednesday 1 November 2017

Not wanting to keep living in the face of everything one stands to lose

Homelessness. Again the loss of all my possessions. Losing large sums of money. Becoming paralysed. Suffering increasingly severe chronic pain. The further loss of any remaining sense of freedom and happiness.

This month the eviction case against me continues, as the pain in my abdomen, appendages and neck becomes nearly unbearable as well. I don't know what will happen with either situation. I do not expect anything but continuing injustice. I also do not expect a doctor to care as my physical condition keeps degrading ever more rapidly.

Sleeping poorly is standard for me at this point, with usually a collective 4-5 hours of interrupted sleep, usually from physical pain. I'm worn out from feeling pain every single moment. The ibuprofen and diclofenac together just manage to get the pain in my abdomen and neck down to a dull roar from an unbearable agony. This morning I awoke after another restless night feeling exhausted, but the diclofenac couldn't reduce the pain sufficiently to allow me to sleep a few more hours.


I must continue to fight. Fight against... everything, I guess. My body is dying. I don't have a home. There's no medical help forthcoming. I can see no future for myself.

There's so much that I can lose this month and the next few. No rest. Just more fighting, more physical and emotional pain as well as likely more loss.

I wish someone could tell me why I'm still fighting. There doesn't seem to be any real point to it. I don't have the energy any more to really fight. I cannot trust others. I cannot escape this place. I'm trapped. All I can do is wait and see whether I'll live, or die.

Maybe it's not so bad to die. I think I would enjoy live if I wasn't forced to suffer through all this stress and pain. But that isn't changing, or going away. I cannot take any more of this. It'll just continue like this, forever. That's not a depression speaking, but many years of bitter experience.

Doctors don't care about me. Others would rejoice at my death. Yet others wouldn't care. Some would be sad.


I cannot change my fate. I can just give up and await whatever will happen to me. Accept it. I'm not an adult. Still a child awaiting to be punished for not obeying. Even if I know obeying would have been the wrong choice. I must obey authority. I must kill all emotions. I must keep fighting. Surviving. Maybe all of it. Maybe by giving up on fighting back will I survive. Stop thinking.

I don't want to keep thinking. I want this all to be over. All the pain and suffering.

I can't stop crying.


Tonight another sleepless, pain-filled night awaits.


Maya

Saturday 21 October 2017

When medication is all that keeps one going

Earlier this year I started taking the contraceptive pill again to deal with the monthly symptoms of the numbness and pain in the right side of my body. This seemed to work great until last month, when I began to lose sensation in my right leg again. As a result, I figured if it was only going to be a temporary solution, I might as well see what these monthly symptoms are like without being kept in check by the pill.

Suffice it to say, it's pretty darn bad. Much worse than before, really. The past few days I tried to suffer through the pain and everything else without resorting to painkillers, but as yesterday I practically lost all sensation and mobility in the right side of my body, I figured some painkillers are in order.

The amazing thing which I learned as a result is that diclofenac [1] applied as a gel directly on the right side of my abdomen (as that's where the sharp pains originate) seems to almost immediately very effectively deal not only with the pain in that area, but also removes much of the numbness and weakness in both my right leg and arm. Adding ibuprofen (another NSAID) improves things even more.

Although the pain isn't fully gone (I can still feel it burn in the right side of my abdomen as I type this), it reduces the effective impact from the pain, numbness and other symptoms to a point where I can walk almost normally again, use my right arm without it tiring almost instantly, and perhaps most importantly, where I can feel my head clear from the fog of pain and headache.


That NSAID medication appears to be so highly effective against these symptoms argues again for endometriosis [2] or similar to be behind them. Endometriosis is something which generally also worsens over time, and which is strictly tied to one's monthly cycle. Two characteristics which sadly hold true in my case.

Unfortunately, endometriosis is generally tricky to diagnose. Whether or not next week's MRI scan will be in any way or form revealing if the underlying problem is in fact endometriosis has to be seen. Each case of this condition is different, making it hard to say with certainty what is going on. All I do know is that when the last MRI scans were made of my abdomen back in 2014, I did not yet have symptoms like these of this severity and magnitude.


At this point I could gamble that I do in fact have endometriosis and try to self-manage the symptoms with the contraceptive pill along with plentiful use of NSAID painkillers. Yet experience has taught me that this would help to cover things up for a bit longer without really addressing the underlying issue. Considering that my female reproductive organs seem to be an utter mess as a result of my intersex condition, there do not appear to be any existing cases or data in the medical records which would preclude the possibility of endometriosis in my case turning fatal.

Living a life that's only made bearable through plentiful medication does not seem like a great prospect to me, either. I would much rather get a diagnosis and possibly surgery that would both give me some concrete answers and conceivably a life free from constant painkiller use and the necessity of taking the contraceptive pill or similar.

Next week better get me some answers, really.


Maya


[1] https://en.wikipedia.org/wiki/Diclofenac
[2] https://en.wikipedia.org/wiki/Endometriosis

Tuesday 17 October 2017

Never an adult. Always ever a child

A couple of years ago I had a dream in which I found myself lying on a surface that could have been a table of some kind, with people who I presumed to be doctors or surgeons standing around me. They were discussing me, talking about how they would carve up my genitals and 'fix me'. I was just lying there for what felt like an eternity, listening in horror to what was being said.

Eventually I managed to get myself together and scrambled off the tablet to flee. I found myself running through corridors, knowing all too well that they would still catch me in the end. That there was nothing that I could do to save myself.


The memories which I now seem to have regained of the childhood abuse which I would have suffered when I was about five or six years old seem to mirror this dream in a way that's almost frightening. Maybe I did begin to remember some of those old memories, just seeping through into my dreams as my mind sought some way to give shape to my terrors I was experiencing at the hands of doctors and kin.

Doctors seeking to alter my body without my permission, or adults seeking to use my body without my permission. Me resisting. Fleeing, yet knowing that I cannot escape. In both dream and memories a child.

Did I ever really escape as a child? Did I truly leave that darkened room after the man forcefully closed the door? Or did that child remain there, in the darkness, with the sound of the man's voice and the slamming of the door forever echoing in their mind?


I can still feel those hands grasping and clawing at me. I still don't like people touching me, even if it is with my explicit permission. There's always this lingering sense of terror that those hands will hurt me again. That any adult is to be distrusted as they may seek to harm me. I don't like adults. I'm glad I'm not one. I don't want anything to do with adults. They frighten me.

Yet a child cannot accomplish anything in this world without support from adults. Or by becoming an adult themselves. I'm not sure I'm ready for such a thing. I'm still that terrified child, curled up in terror and sadness in that dark room. I am not sure that I can ever find the courage to face the world outside it ever again. Not after what happened. Not after what keeps happening over and over again to reinforce those notions about adults.


There's no adult body waiting for me outside that room. There's no home waiting for me, either. No hope. No happiness. Just more suffering.


It truly doesn't matter what I do. Nothing will ever change.


Maya

Saturday 14 October 2017

On being intersex and never being a part of humanity

For the past months I have been slowly digging up the memories of the childhood abuse I seem to have suffered as a young child. Most recently there's the horrific memory of lying down, naked, with hands touching me everywhere in a forceful fashion. I recall resisting, and may have fought back at one point, startling them and allowing me to escape into that room which I remembered first, with this man yelling at me that it was all my fault before slamming the door close.

I think I do understand quite well now why I suddenly didn't allow anyone to touch or hug me any more back then, even though according to my mother I used to be very open and friendly to everyone. Suddenly I became quiet and withdrawn, not allowing anyone to get close to me in any form or fashion. Not even if that person was my own mother who I am pretty sure has never harmed or hurt me in any way.

The strange thing about recalling all of this is that it fosters an understanding of myself which I never had before. Suddenly those weird quirks and fears which in hindsight controlled my life start making sense, allowing me to slowly deconstruct those behaviours. In a way it's making me more... normal, I guess. My feelings of terror when someone tried to touch me without my explicit permission, or even just get close. My distrust and hatred of sexuality. I can give much of it a place now, so that it no longer has to control me, changing me into a person who I am not.


Suffering childhood abuse is something that's sadly so common that there's widespread understanding and acceptance for the victims of such a tragedy. It almost feels like a rite of passage to remember and accept all the horrors one had to survive as a child to make it this far. I feel more part of humanity now as a result, oddly enough.

The sharp contrast here is with my intersex condition. Even though admitting to having such a condition and coming out for it in public, I do not feel that it is anything other than a hindrance to me in society. From medical obstruction and downright abuse, to the generally accepted notion that it is fine for intersex conditions to be eradicated. That they do not have a place, with all of us intersex people just being part of some freak show.

Even as my body suffers many curious as well as exceedingly painful symptoms as a result of my hermaphroditic condition, the response from doctors remains one of dismissal and refusal to even look at my case. Worse, many keep calling it a 'disorder', strengthening the notion that intersex is something that should be eradicated.

As was proposed by Dutch doctors on multiple occasions, I should just follow the transgender process and have the 'male' parts ripped out and 'female' parts sculpted from the remains. Never mind that my body has functioning ovaries producing female levels of hormones. Never mind that I have a monthly cycle. Never mind that during each menstruation I suffer greatly from symptoms akin to those of a massive inflammation in my lower abdomen.


Nobody cares.


Even as my childhood abuse trauma makes me feel closer to my fellow human beings, being intersex just keeps pushing me away. I do not even care to talk with other intersex people at this point, or look for help myself. The former just reminds me of my own hopeless situation and isolation, and the latter is simply futile. I won't ever get medical help for my intersex condition. Hasn't happened in over twelve years of actively seeking. Won't happen now.


I won't ever be human. I'm a disorder. Not a human being. Humanity has decided to eradicate Disorders of Sex Development by stripping them of the more humane term of 'intersex', making them feel less bad about cutting up intersex infants' genitals and denying desperately needed medical help to adult intersex people, or even brainwashing them into believe that they are in fact transgender.

What am I supposed to do? What can I possibly do? Just ignore the pains ripping through my abdomen, numbing my leg and causing agonising pains in my hips, without ever knowing what is happening inside my body? If I was a regular woman, they'd likely get away with that. But if they first tell me that I do not have any female reproductive organs, or just some, or actually still a few more than assumed, then I would at least expect some kind of explanation.

Instead I'm being stone-walled. I'm not supposed to exist. I get it.


That's after all what it means to be intersex. We're all just mistakes.


Maya

Wednesday 11 October 2017

Continuing towards my 20th MRI scan

This morning I made an appointment for what will be my 11th MRI scan so far. During yesterday's neurologist appointment the neurologist confirmed that I am indeed still experiencing the numbness and pain in my right leg. With the tests on the cerebrospinal fluid (CSF) - drawn from my body during a lumbar puncture a while ago - showing up all clear, the neurologist wanted to check for the next few items to investigate.

Specifically myelitis (infection/inflammation of the white or grey matter of the spinal cord) [1], and a spinal disc herniation [2]. Ergo another MRI is needed, this time of the lower part of the body, since the first scan just covered the part up to and including part of the chest area.


With the upper part of my body seemingly fine, even with the many white spots (lesions) seen in my brain, the focus now shifts to the rest of my spinal column and the nerves inside it. Things will be interested if neither of these two presumptions turn out to be true and there's neither a herniation, nor any indications of inflammation. What will the next step be, if any?

Based on the observation that the numbness in my right leg seems to be linked to my monthly cycle (discomfort and pain starting some time into the first week, worsening until tapering off over the next two weeks), it would be reasonable to presume that something is swelling up or expanding in mass so as to press on the sciatic nerve that innervates the leg.

Along with the pain, numbness and discomfort in my right leg and hip, I also experience pains and discomfort in the lower abdomen and genital area which would suggest that something is inflamed or at the very least overly sensitive and irritated. This to the point that toilet visits around this period can have me literally in tears afterwards from the pain due to the pressure on what feels like a severely painful vagina.


On Monday I contacted the endocrinologist who I last saw in 2016 and who was also responsible for getting me a bit of medical help and some answers about my body. She had mentioned something about a gynaecologist who might be able to help someone in my situation, which seems like the kind of person I could use right now. So far I haven't received a response yet, however.

It will be interesting to see how this big puzzle that is my body and its issues continues. Will it be the detour via the neurologist which ultimately will lead to the discovery of what is really going on inside my abdomen? At this point I at least really appreciate how this neurologist continues with this investigation until all reasonable causes have been looked at and dismissed. The first MRI scan surprised me, because I had expected to be dismissed for a symptom as vague as 'numbness in my leg'.

The lumbar puncture was a surprise, too, and I honestly had expected yesterday's appointment to be the last one. Just an 'everything looked fine in the test, nothing else we can do now.'. Instead the neurologist surprised me again by looking briefly whether a scan of the lower part of my spine had been made already and ordering a new MRI scan when he didn't.


My feelings about this 11th MRI scan and second scan for neurological purposes are a bit mixed. I don't really expect them to see anything, yet if they do it could be something bad, possibly requiring surgery. On the other hand, if they find the cause of this numbness and such, that would be nice.

There is also the consideration of just how far down the torso the scan will reach. If they'll go just for the spinal column, then the coccyx is roughly at the level of the bladder, which would miss a big section of the lower abdomen. If they do however scan the lower abdomen or a large section of it, the results could be even more interesting.

It's been a few years now since the last MRI scans were made of my abdomen. Before my body starts its true puberty back in 2015. With my body presumably having matured significantly inside as well, it might be that one can see distinct changes on an MRI scan, including the presence of a proper lining inside the vagina, which was previously mostly absent.

There I really hope on one hand that they cover that area, as even with imperfect MRI settings for soft tissues it could still show a lot. On the other hand, I would be a tad nervous after the scan to face the radiologist if they went low enough and I have to explain my intersex condition. Would be worth it, though.


With general medical help for my intersex condition and its complications still being practically absent, this specific investigation into just this numb leg might be my best bet to get some answers. I truly hope that this neurologist will continue to surprise me.

Some surprises are really quite pleasant :)


Maya


[1] https://en.wikipedia.org/wiki/Myelitis
[2] https://en.wikipedia.org/wiki/Spinal_disc_herniation

Saturday 7 October 2017

The many ways in which I'll die this year

Once you lose hope, it's all over, they say. Having hope is a good thing.

It's all relative, I guess. If there's still an inkling of a possibility that things will improve, it's fine to have hope. But for example for someone who is terminally ill, with mere weeks left to live, what's the point in holding hope? There won't suddenly appear a miracle cure that will fix everything. You can only make peace with the fact that you'll be dying soon.

In some ways I wish that I was suffering from some terminal illness. It would make things so much easier to explain. As well as give some definite shape to my life.

Recently the psychotherapist who is also acting as my medical coach informed me that she doesn't see any point in scheduling new appointments as all of the medical contacts through she tried to find medical help for my intersex condition either turned up nothing, or she didn't receive a response at all. She will contact me again if she has something to report.

What should I expect there? Nothing. No hope. No expectations. Just nothing. It's nearing thirteen years now since I started searching for this mythical medical help and neither I nor others have managed to find a single doctor or related who could or wanted to do anything for me, with only a few minor exceptions. In the end I'll just have to accept a body which I do not understand, which hurts more and more each month, with previous methods to reduce the abdominal pains and numbness in my leg failing to offer much relief any more.

It seems that those thirteen years were basically wasted. Or maybe not wasted. I did learn a lot about myself. Including that I'm not human. Not this body of mine, nor myself. It's all too alien to be human. I see lots of humans every day, and they are nothing like myself.

Especially now that my body is seemingly reverting to a younger physical age, with previously dormant ovaries suddenly beginning to function, old and newer scars suddenly hurting and vanishing, including the two big scars on my lower abdomen from the 2011 orchiectomy. Nothing about this is normal. Nothing about it something that should happen. Yet it is happening, and it's up to me to deal with it somehow, because nobody is going to give me answers about what is happening, or why.


During the past summer I was able to briefly forget about some of my worries. The contraceptive pill successfully held off the worst of the monthly pains, and mostly prevented the numbness and pain in my right leg. The whole eviction business had been pushed back to the end of the year, which seemed a small eternity away.

Yet the latter starts again by the end of next month, with the inspection at the apartment. I'm wearing headphones or earplugs almost full-time again while at the apartment because of the noise from the heating system and other noise sources. Along with the rapidly dropping temperatures this makes it hard to put thoughts of this upcoming event out of my mind. Just being at the apartment is enough.

Last month I found out that the contraceptive pill isn't helping nearly as much as it used to either, so that's a lot more physical pain I have to deal with as well. To some extent the pain and numbness can be dealt with, but even when maxing out the ibuprofen, so much of the pain and discomfort remains. Worse than the pain and numbness is not knowing why any of this is happening, or what it'll lead to. It makes it easy to despair.

And what will the eviction case result in? The acknowledgement that my assessment of the defects was correct, hopefully. This would give me all the time I need to find something better, maybe even buy a house, without the pressure of being forced to leave. At this point I'm absolutely not capable of doing anything there. The last attempts there (last year, and early this year) resulted in me struggling through a severe suicidal depression for a weekend.


That's one of those points where I'd wish that I just had something visible, like cancer or such. Something that people understand. 'I don't have the energy for it', or 'it causes me emotional agony', or 'it kicks me into a suicidal depression' are things which the average person does not understand and consequently does not accept.

Even for myself it's hard to understand this level of emotional distress and trauma. Or even what will trigger these suicidal depressions, or why. The most basic explanation is probably that I can deal with intellectual, purely rational topics just fine, but not with anything involving emotions or feelings. Dealing with an irrational system such as what humans have put up for the process of procuring or renting property is beyond merely stressful for me, even before taking into account that all of those people you deal with are looking to screw you over.


What I do hope for is to reach a point where I can have my own house, away from other people, and as few negative interactions with people as possible. I think I have had my fill of humanity. From the abuse I suffered as a young child, to being constantly bullied and harassed, by fellow students, doctors, psychologists, and many others over the years. Society's systems which have failed me over and over again. The constant feeling of not belonging in this world. Of being unwanted.

I carry no love for humanity as it continues to seek the end of my existence. Even as my thoughts are occupied with thoughts of escaping my situation through suicide or just passively giving in through an action such as just getting up, walking away and continuing to walk until I'll either die or something happens. Or just letting it all happen to me, such as when they advise women to not resist when they're being raped, because doing so will 'make things faster and easier'.

I wish for happiness. I hope I will find it. My current reality is of the same old war being fought for my very survival.

There's no room for hope or dreams in the midst of a war. Just strategy and continuing to fight long past your body's and mind's endurance.


Maya

Sunday 17 September 2017

Amnesia, or: Why it's all your damn fault

It's one of those images which just remain with you forever. Seeing these people whom you know to be classmates come walking around the bicycle shed and crawling through the gap between its boards and the concrete foundation, as they make their way towards you. Slowly, inevitably. Standing on the field behind the bicycle shed, you know that all you can do is await the inevitable. There were probably a few dozen of them. It felt like hundreds.

As they circle around me, the jeering, insults and egging on starts. Pushing my way through the throng, I leave them behind, but knowing very well that I cannot escape them. They'll always be there. Each lunch break. And outside school time as well, as I noticed one day when they tried to block my way while I was cycling home. Only by quickly leaving the bicycle path and passing their blockade by using the road was I able to avoid whatever would have come next. Nothing good, I imagine.

I remember well that time I got punched in the stomach. It hurt so much. As I stood there on the parking lot, buckled over in pain, I just heard others laugh at me, and call me weak and a sissy. Or that time when someone spit straight into my face. I never told a teacher about any of this. I ignored it all. Maybe it would go away?

Years ago I learned that I had apparently taken on the main bully from back then, during primary school. Apparently I had confronted him and beaten him up something fierce. After that he stopped bullying me and we sort of became friends. Funny thing is that I do not remember any of this. A lot of my primary school time is like that: gaps where significant events should have been. Things which I should have remembered. Like getting revenge on this bully.


In hindsight it was likely that I suffered a blackout, as a result of the trauma I suffered as a young child. Abuse is all the same, after all. Likely something had finally snapped inside of me, after suffering all of that abuse. Same as how I suffered a blackout a few years ago, due to the abuse I suffered at the hands of doctors and psychologists. There's a lot one can take psychologically, but at some point something just... breaks.

When possible, one's mind seeks to just cover it up. Put the memories deep away, where they can fester and hurt without one consciously realising why one struggles with all of these painful feelings and weird if not disturbing impulses. I guess in that sense I'm glad that I'm beginning to remember things now. Things of my childhood, mostly.

The memory I recalled a while ago of the big man standing over 5-year old me is becoming more clear now. Most recently I seem to remember him yelling at me. Accusing me it all being my fault. Everything that had happened. Everything that was just done to me. All my fault. I did it. If only I hadn't been there. If only I didn't exist. Everything was my fault. I should just have cooperated. Followed orders. I think that after this I was left alone in that dark room. To cry and feel horrible. To leave and try to forget what had happened. Maybe it would go away?


It never goes away.


I always feel it's my fault. Something is just wrong with me. Something which justifies getting abused as a child. Which justifies getting bullied during primary and high school. Which excuses everything about the horrors inflicted on me by doctors and psychologists. The very reason behind why I'll never find a home again. Ending up homeless and dying on the streets is the only fate that's acceptable for someone who is such a terrible person like me.

I cannot stop hearing this man yelling at me. It is my fault. I believe it, somehow. If only I hadn't resisted. Hadn't struggled. I am just a child, what do I know?

I'm still that 5-year old child. I'm still suffering the same abuse, the same yelling, the same terrible darkness and loneliness afterwards. Over and over again. It never ends. I try to argue that it's not my fault, that none of what happened to me was my fault. Somewhat like the struggle to stop blaming myself for being raped in 2006. Anger is helpful there when it's a past event.

When it's still ongoing, one can only keep putting the feelings and memories away. To let it fester and sap away one's mental strength. Things like the medical madness, with doctors and psychologists blaming me, saying that it's all my fault. If only I would just accept what they keep telling me about me being just a boy. Why can't I just follow orders? I'm less than them. They know better.

Or with the eviction case. It's my fault. I shouldn't have reported issues. I shouldn't have attempted to reach an agreement on reduced rent. I should just have suffered the abuse. Like a good little child. This is an adult's world. Your opinions and thoughts are irrelevant. We know what's best for you.


It's all my fault. It has to be. Or maybe it's just that man's voice which keeps haunting me. Yet I do not feel the confidence to say that what this man yelled at me was incorrect. Maybe everything is my fault after all, even if other people tell me it's not. I don't know who is right. Between all of these horrible memories and fragments of this rapidly fading lie of a carefree youth, I'm not sure who is right, or what reality is any more. Who to trust, either.

Why are people such horrible creatures who have to keep inflicting so much pain upon others?

I don't understand any of it. I just want to get away. Somehow. Make this pain inside of my head stop.


Even if...


Maya

Wednesday 13 September 2017

A question of identity

It's interesting to contemplate the meaning of 'self', in the sense of one's identity. What I have found over the years is how tightly this is bound to one's body. Naturally I learned this by having the very definition of what my body supposed to be repeatedly completely changed from what I and others believed it to be.

During my youth and puberty I was supposed to be a boy, so I tried to be one. The past decade could have been spent on me coming to terms with the fact that this assumption was essentially wrong, if it wasn't for those always helpful doctors and psychologists insisting to me that I was and always would be 100% male. Maybe I might be transgender, but that would be about it.

The resulting confusion would last until late 2015, when my body was found to have entered a proper female puberty, with my ovaries producing normal levels of oestrogens, and with my breasts and further accessories growing as expected. No matter that I had been on hormone replacement therapy (HRT) for years prior to that. This time my body would show how it was done.

It's now approaching two years since I went off HRT, and my periods seem to be getting slightly less painful now, though in how far that's to do with the effects of the contraceptive pill has still to be seen. My breasts are still growing, with me having to change bras repeatedly and with me having to face the reality of having actual cleavage. Suddenly I am confronted with the prospect of becoming an actual adult woman. It's a very different image that I have to confront in the mirror, suddenly.

The impact is that of me wondering about how old I truly am. Physically my body seems to be that of a 16-year old girl or thereabouts, at least considering the current developments. Having to deal with the joys of acne and the emotional realisation of a changing body further add to this. I definitely feel that in my current state I might fit emotionally far better in back in high school.

It's all very confusing.


So then what or who am I? The 'what' is hard to answer, as I have no idea what my body is doing, why it's doing it, and where it'll end up at. Maybe it'll turn out to be a 'regular' puberty and eventually everything will flatten off and normalise. At this point I'm also a bit amazed about how quickly some of my old scars seem to be changing, possibly disappearing altogether. I wonder what it all means.

As for the 'who', the remembering of those old childhood memories of me suffering some kind of abuse have forced me to look at myself in ways I had clearly avoided in the past. Along with many answers I also found many new questions, about many things. I think the worst realisation that came out of this was that my supposed 'care-free childhood' as I had often referred to in media interviews turned out to not really have existed. A few happy years, probably, yes. Yet looking back with new eyes now, I can see how troubled and unhappy I was.


So who am I then? Someone who likes to lose themselves in science and technology, because they are fully rational, logical worlds. Everything there makes sense, or can be made to make sense through study. As for me in a more social and emotional sense, I don't really know. I know that people often regard me as 'distant' and 'without emotion', but that's just the shield I have put between myself and everything that I do not understand about myself yet. I cannot open up myself fully without having made sense of things, emotionally, first.

There are too many questions, uncertainties and terrors that I cannot trust or rely on people. Thus I prefer to approach a situation logically and rationally, not letting emotions interfere. Because this is safe. Yet it's not really 'me'.


I am well aware of the fact that 'personality' isn't a fixed thing, but shifts and changes with one's collective experiences and memories. Thus my ego and self are both bound to this collective mass of recollections and experiences. Both the traumas and the positive events. As a result I seem to bounce between two extremes within my psyche, between a state of severe depression and helplessness, and one of boundless energy and optimism.

I feel that the latter state is more natural to me, that it reminds me of all the aspects of myself which I appreciate and like. I want to be like that all the time, if I can. I also feel that the former state is merely one that has been forced upon me by my environment. Brought into being by childhood abuse, by being constantly bullied, ridiculed, called a liar and worse. By rarely having anyone put actual faith into me as a person. By always being the odd one out, due to being too smart, too different, too weird.

I absolutely hate the person who abused me as a child. I both despise and appreciate getting bullied, because it hurt like hell, but also taught me to fight back. I find the behaviour of most doctors and psychologists so far despicable, in that they didn't dare to admit to their own ignorance, instead seeking to actively harm me. Something of which they'd presumably have been aware.

Yet I do not wish to fill my heart with hatred and darkness. I want it all to be gone. To be a thing of the past. Yet nothing I do seems to suffice to make that happen. Worst is when people start accusing you of looking for trouble.


Maybe I already know who I am better than I have yet realised. Maybe this realisation merely waits for this long-awaited spring after more than two decades of confusion, pain and darkness. The light at the end of the tunnel, to put forward a tired cliché.

I'd like to just sleep until spring, really...


Maya

Monday 4 September 2017

Child abuse and the end of one's life

It's been quite a few years now since a cousin of mine committed suicide. Through my mother I have learned much about what she had to suffer through. From the sexual abuse she suffered as a child at the hands of an uncle and grandfather - along with a number of other girls - to the wilful denial and dismissal of what she had gone through by her family, including her own mother. This all culminating in the criminal case against this uncle and grandfather for multiple cases of child abuse getting dismissed in court due to a formulation error on the side of the defence.

I used to think that I understood why she decided to took her own life. Both my mother and I sympathised with her decision and were nothing short of venomous about the actions and outright betrayal of her own family and the justice system. Yet now I realise that I didn't understand it at all. Before I was just able to sympathise on an abstract level. Now I can directly feel the pain she must have suffered.

Looking back, it's amazing how long these memories have remained buried, even though I always wondered about this sense of incredible sadness and loss that I seemed to harbour in the depths of my mind without understanding why. Now that I am finally able to give these feelings a place and context, it's possibly even worse. What used to be dampened and lessened in its impact through the veil of ignorance, I now get to experience directly.

What happened to me when I was five, maybe six years old basically ended my life. What I recall most strongly is this figure standing in front of me, like a dark shadow, reaching up so high and appearing so incredibly threatening to me. I try to defend myself. Brace myself against what I know will come next. Knowing full well that there is no way that I can do anything to help myself.


Of course I didn't want to remember any of this. I might have been much happier if I had never remembered any of it, but unfortunately its impact has reverberated through and largely shaped my life. Just because I could not remember what had happened didn't mean that it didn't affect my life. Maybe it was the generally safe environment in which I grew up which allowed me encapsulate these memories and pretend none of it happened. Maybe I just couldn't deal with it and pushed it away.

I don't know what I should do at this point. Part of me knows that I died back then, at the hands of this monster. Another part of me is just in pain, unable to function any more. Only a sliver of me seems to be still capable of dragging myself through daily life, as I noticed today at work. Everything is just pain, incredible sadness and rage.

I need help at this point. Some kind of support. I hope that my psychotherapist can help me there. I hope that the court can protect me and not fail me like they failed my cousin. I hope that I won't find myself alone and abandoned like my cousin did, whose own mother called her a liar. What she went through was the worst kind of loss, first of one's body, then one's self, then to be cast out and thrown away by everyone else, thus losing literally everything.

Deep inside I can feel this terrible sense of loss. I finally understand why I was so negligent and abusive towards my body and myself over the past years. Why at some points early on I tried to deal with this loss by reflecting what had been done to me onto others, maybe in the hope that it might help somehow. Which of course it didn't. Most importantly I can see this hole inside of me now where the real me was supposed to have been. Not this scared, terrified child that could never grow up because it never could trust others again.


I will not just submit myself to the eviction case or anything else like it, like a willing victim. I do not care if that's 'how it's supposed to be'. That's what I got told as well while I was being abused as a child. It's likely what my cousin and all those young girls got told as well by those monsters. Cease your questions and objections. Just go along with it. We're older and wiser. We know best. This is how it's supposed to be. How it's supposed to work. Now let us do our thing.

Whether it's a black-hearted landlord or family members, doctors and lawyers devoid of empathy, or just regular people wrapped up in their delirious layers of ignorance, most often it's not consciously observed by most what damage is being wrought, until it's too late. Every person has a right and duty to defend themselves against this, no matter what. To survive and hopefully live on to maybe thrive.

Sadly, at some point the only way to stay in control of one's life and not submit to injustice and suffering is through the abandonment of one's very existence. Anything else is to accept the death of one's Self. Since nobody reached out to help my cousin, she had to take this last, terminal step to remain true to herself. I share her pain and grief, as well as the rage she must have felt at a world which abandoned her like mere trash.

I mourn that she was forced to take this step. I pray that I won't have to follow her footsteps. Even though I try to keep an open mind and stay positive, it's painful to be reminded over and over again how little the average person truly cares about others. Maybe it's because they have never truly experienced suffering that such a level of empathy remains closed to them. I do not know, but it makes me worry that in a matter of months it'll be my turn to definitively take back control over my life.


Please, do not abandon me. Please, protect me against those who seek to harm me. Just this once.

Please make this nightmare that I had to keep reliving since I was a child finally end.

I cannot do this. I need others to help me. They must.

If they do not...


I guess I was already dead anyway. This was just one long nightmare before the curtains finally close.


But what if...


Maya

Sunday 3 September 2017

Truth always beats ignorance, even if it hurts like hell

After my sudden recollections of youth trauma yesterday, both friends I talked with and myself questioned whether it were truly memories of what happened to me when I was about five years old, or that it was just an interpretation of my mind, mixing real memories with recent traumas. After one night and most of today to reflect on these recollections and my response to them, I'm convinced that they're real.

It all fits together too well. It explains so much about myself, about the things I have struggled with for so many years. It also feels as if a part of me which had remained a child has... vanished, for lack of a better word. It also hurts so much. At this point I can barely function, feeling emotionally distraught and prone to fits of crying. I mostly feel intensely sad and angry, as well as frustratingly helpless.

I also know that what triggered these recollections was mostly the prospect of the eviction case against me soon continuing, with an official inspection of the apartment in November. Previously I didn't quite understand the blind terror which this evoked in me, but now I do. Me trying to get away from this... person who had done something so unspeakably terrible to me, and the complete loss of trust in others which this triggered in me as a young child, it's all just being repeated again.

No matter what I do, no matter what I try, this person, or even just a representative of him will always be there, always to haunt me and continue the raping of my mind and body. It's been like that since I was five years old. It will continue forever. I cannot, will not ever trust others. Yet I cannot get away from them.

I don't understand why it had to be me. Why all of it had to happen to me. Why it keeps happening to me. If there's nothing that I can do against it, then I may as well... give up. Just walk away from everything, whether in the literal or figurative sense.

I fervently pray that somebody will interfere, to shield me from this new horror that comes hurtling towards me like a freight train. Just dealing with these recovered memories is bad enough. I do not think that I'm strong enough to take any more stress. I really want to live through this year, to maybe reach a point where I can actually feel safe and not feel forced to think about terminating my own existence or just walking away to never return as the only two options available to me.


Yet even though these recollections and new details that I can now remember have completely unsettled me, the change that has come over me will in the end be positive. Finally I am able to understand so much about myself, to grasp why I felt certain ways. It feels as though I can now finally proceed with my life, after having been partially stuck in the past for so many years.

I just hope that I get to live to see it.


Maya

Saturday 2 September 2017

Recalling childhood trauma really hurts

For the past days I felt quite fearful, without any real reason, though likely triggered or at the very least worsened by the noise of presumably construction in the apartment above me at very early and late hours, often startling me. This sensation of being fearful just kept increasing.

Today I woke up from extremely loud drilling in the building, shaking the entire building and making me decide to leave for the office instead of staying at the apartment. There are the office I had quite an okay time, enjoying the peace and quiet while working on some projects, both private and for work. After the thunderstorms had passed in the afternoon I went back to the apartment.

Once back, I was relieved to note that the drilling had ceased. Beyond some shuffling, scraping and bumping on the floor upstairs for a bit everything was quiet again. I took that opportunity to read a few more chapters in the book which I'm currently reading while relaxing on my bed. I felt okay after this, though with a slight headache, still.

Then, as I sat down on my computer chair, something hit me. Suddenly I was a child. A young child. Some figure was looming over me. Threatening me. A man, I think. I felt terrified. I had to protect myself, shield myself. Get away. I felt exposed in my genital area no matter what I did. I think something was hurting there.

Even though I was still aware on some level that none of that was real, the sensations and feelings of terror were too real to ignore. I found myself cradling myself, shielding myself from this horrible figure that was threatening me. Running away and hiding. Cowering. Crying.


Eventually I managed to pull myself out of that state, but the memories remain. Even now they're recollections more real than life. I feel that something has changed inside of me, as if part of me has been ripped open and something oozed out of the wound. Something terrible. Something of which I had always felt that it was somewhat there, but this is the first time that it has felt this real.

It's no longer something distant or theoretical to me. Not a vague if disturbing sensation that just nags me in the back of my head. This is reality.


As I type this my head hurts and I am struggling with chaotic feelings. I had expected that I would one day be able to recollect again what had happened to me as a young child, but I had not expected it to happen like this. To be so incredibly painful and disturbing. So terrifyingly real. I think I'll be okay again. Eventually. Once this horrible pain stops and I can breathe again.

I'll get through this. I must.

I must accept this. I can no longer hide from the truth.

I cannot believe this is real.

I cannot believe this truly happened to me.

Please let it just be a nightmare.


Please let me wake up. All safe.


This hurts...


Maya