Monday, 15 January 2018

Hanging around while feeling unneeded

It is normal for any human being to want to feel wanted, needed and possibly even loved. To remove or blunt that desire means to strip a person of their empathy, of any shred of love for themselves and ultimately the will to live.


For the past decades I have struggled with being 'different' in a variety of ways. First there was me being gifted, and a purely visual-spatial thinker. This was what first got me isolated during primary school and severely bullied and beaten up on a number of occasions. My only friends during my school period were the other outcasts and misfits.

Then there was the intersex thing. To discover that I never was a male. That my body wasn't at all what I had been told what it was supposed to be. To society I merely changed from a male into a female role, but underneath my skin things are infinitely more complex. Organs, or at least functional tissues, have kicked into action and forced my body to become definitely more feminine along with repairing old scars and the like. Yet I will never be a woman. Once a hermaphrodite, always a hermaphrodite.


Thirteen years. That's the current count for how long I have been trying to figure out what this body of mine is about, and more recently why I'm suffering chronic pain, abdominal distension, etc. Last month I finally figured out that what has been causing a lot of pain and discomfort since I was 11 years old are fissures, at least in the rectum judging by the blood. Possibly in the vagina as well. What causes those constant fissures, however?

The most reasonable theory which I have so far discussed with my GP is that there's a build-up of fluids inside the vagina and/or around that area, which causes the rectal wall to bulge inwards, at which point regular toilet visits would shred this wall, causing constant fissures. Those fissures and discomfort experienced each month also only occur on the side between the rectal and vaginal walls.

As for the actual cause behind all of this, and possible outcomes, there are many possibilities. Everything from rectal wall spasms to ovarian cancer and lots of secondary causes. The coming months I hope to learn more.


Yet it's been thirteen years. Thirteen years during which everything rapidly became clear to me what had to be done and examined. It still feels as if doctors are only just catching up on the need to actually examine a hermaphroditic body for possible complications due to the irregular formation of certain tissues and organs on account of having two distinct sets of DNA try to steer the same mechanisms.

It feels as if the only reason why I'm being taken more seriously now is because all of those issues which I was worried about for over a decade already are now finally beginning to appear. Finally something which they can understand and act upon, maybe. It's too easy to feel bitter at this.

Apparently certain types of cancer are more prevalent among hermaphrodites, specifically those of the reproductive organs. Sepsis is also much more common, for when fluids get trapped and become infected. I have read up on this and tried to convince doctors of the urgency to determine which organs I have in my abdomen for this reason. Instead all I got was one side telling me that I had a normal male body, and the other side that I have a hermaphroditic body. Attempts to focus on the latter did not pay off.

What might save or still end up killing me is time. Simply wait long enough until things start going wrong and you can present concrete symptoms to doctors. From numbness and pain in one's limbs to abdominal distension (from 70 to 82 cm), the aforementioned fissures accompanied with bright red blood and the sensation of a lot of fluid being trapped underneath the skin in the vaginal area. They have their work cut out for them.

Yet nobody still cares about me being intersex.


I guess that the gifted thing keeps haunting me. I was always the one to question everything. The child who preferred to hang out with adults instead of with those their own age. The one who couldn't stop learning, questioning and dreaming. I cannot just 'be'. For me 'Hell' is a life lived without meaning.

You know what lies at the end of every single 'why'?' question? Nothing. Because the universe just is. There's no reason for its existence, just like there is no reason for our own existence. We exist because along a line of ancestors there were always those who had to mate and produce offspring. Why? Because.

Yet the universe is not without meaning. Through its existence it produces stars, galaxies and much, much more. Life is the same. A life lived well produces its own meaning. I guess this is the primary reason why I feel as if I'm being suffocated when I consider a reduction of being able to live. To do a menial, meaningless job working on something which in the end nobody really cares about, for example.

In some ways I am a thrill-seeker, I guess. Just not by risking my own life and health, but by seeking new intellectual challenges. By challenging certainties in science and technology. To me that is what gives life meaning. Any other existence is too terrifying for me to consider.

This, too, makes me a poor fit for society.


What more is there that makes me truly unfit to function in society and prevents me from feeling like I belong or am needed anywhere? Nobody needs my traumatic experiences recounted to them, I'm sure. What happened to me when I was five years old is my own problem. It's my responsibility to make sure it doesn't interfere with me pretending to be a Normal Human.

Many things which are 'different' about me are mostly just quaint, though, I guess. From being ambidextrous, to being a super-taster and so on. They just make me 'slightly odd', I reckon.


I guess that in the end the question with which I am left  is a simple: where to from here?


Without a job or anything else to keep me tied down to this country of Germany, I am free to go and work and live anywhere in the world. Assuming someone needs me. Something exciting. Something hard and challenging. Something that can keep my interest.

The simple trick is to find the right employer.

Or just go into academics and forget about the 'real' world :)


Maya

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