Thursday, 25 May 2017

Summary of my medical history

Since I now have an official medical coach, I needed to summarise my medical history so far, to help her make sense of all that has happened, been concluded and done so far. I must say that it's definitely an impressive list, if only in all the wrong ways.

Have a look, if you want:


2005

  • Realisation of being intersex.
  • First appointment at gender team at the VUmc in Amsterdam.
  • Second appointment after half a year (with psychologist).
  • Blood test supposedly shows normal testosterone levels (results not found in VUmc file).
  • External examination by gynaecologist, who claims to see ‘no signs of intersex’.
  • Last talk with psychologist before being dismissed.
  • Letter is sent to GP describing Maya as showing ‘unusual behaviour for a transsexual’.
  • Start of therapy at psychologist in Zutphen. First appointment psychologist describes Maya’s thoughts about being intersex as ‘delusional’.

2006

  • Psychologist keeps trying to convince Maya that she cannot be intersex, but should just go back to the VUmc and follow the transsexual protocol.
  • Maya relents and returns to the VUmc gender team.
  • Multiple appointments with psychologists follow. The one before last appointment, the psychologist promises that Maya can already start on hormone therapy and that the number of psychologist sessions can be drastically reduced because of the many sessions Maya has already had with a psychologist.

2007

  • The last psychologist appointment, all of these promises are withdrawn and Maya is told to follow the usual protocol of half a year of talks before any decision can be made. Maya gets angry, throws her belongings on the floor and leaves the room.
  • The members of the VUmc gender team talk with Maya’s mother, asking her whether Maya is violent towards her, or even physically abuses her.
  • After hearing of this, Maya cancels all outstanding appointments at the gender team.
  • Maya orders testosterone blockers and estradiol via the internet and starts hormone therapy on her own, supported by hormone level tests provided by her GP.
  • After a period of experimenting, Maya settles on 25 mg Androcur/day and 4 mg Progynova/day.
  • On December 21, Maya has her first MRI scan in a private clinic in Germany. This shows her to have both male and female genitals (closed-off vagina, no prostate).

2008

  • Maya’s GP sends MRI scan results to VUmc gender team. They immediately want to make an appointment.
  • Results of the first chromosome test on Maya’s white blood cells: show XY pattern.
  • At the VUmc, Maya is told that they didn’t see anything unusual on the MRI scans. They insist that she’s just a regular male.
  • Official first name is changed to ‘Maya’ from the male first name by a Dutch court on the basis of her clearly female appearance.
  • Appointment at the Erasmus hospital in Rotterdam. Leads to two MRI scans (September 11, November 6th). Both radiologist reports insist Maya is a normal male. Note is made of two testicles inside the scrotum, even though only one testicle ever fully descended.
  • Multiple appointments at AMC hospital in Amsterdam with endocrinologist and finally with a gynaecologist. The latter talks with members from the VUmc gender team and concludes that Maya suffers from autoparagynaecophilia, a term indicating that Maya thinks that she looks physically female, even though she is not.

2009

  • Start of appointments at second Dutch gender team in Groningen:
  • Denial of any intersex condition.
  • Insistence that Maya is physically fully male.
  • Refusal to communicate with the German doctors who first diagnosed Maya with an intersex condition.
  • Basic chromosomal testing (white blood cells, cells from inside of cheek) show 46,XY pattern.
  • Insistence that Maya suffers from gender dysphoria.
  • MRI scan at Onze Lieve Vrouwen Gasthuis hospital in Amsterdam (December). Radiologist report indicates no sign of an intersex condition.
  • Diagnosed with Post-Traumatic Stress Disorder by psychotherapist.

2010

  • More appointments at the second gender team, mostly with psychologist.
  • Examination by urologist of the gender team, including a painful examination of the urinary tract and bladder. Conclusion is that there’s no sign of intersex. Entire day filmed by Dutch documentary team.
  • Appointments at VUmc gender team, who offer to ‘turn her into beautiful woman’, but no physical examinations, just the transgender course.

2011

  • Suicide attempt using sleeping pills after a forced eviction. Maya wakes up in the ER and is taken care of by her mother.
  • Rejected by (Christian) GP due to her intersex condition.
  • Poor treatment by new GP leads to a black-out event (triggered by PTSD, possible DID), during which Maya is subjected to severe violence by police who were called onto the scene. Maya suffers bruised bone in her right leg, severe bruising and peripheral neuropathy.
  • Attempts to get help at John Hopkins Medical in the US, is rejected because ‘they don’t do sex-reassignment surgery’.
  • Appointment with urologist at hospital in Almelo, gets told to seek help in Germany, forget about The Netherlands.
  • Decision to focus on getting her legal gender changed, as her legal (male) gender does not match up with her appearance, which causes a lot of confusion.
  • Has surgery in Hamburg, Germany, whereby the testicles are removed via an incision on the lower abdomen. An exploratory incision is made in the perineum whereby the entrance of a vagina is found.
  • The biopsy of the removed testicles shows that they are underdeveloped, explaining the low testosterone levels and making clear that they never produced sperm.
  • The use of Androcur is no longer needed and is dropped.

2012

  • Maya’s legal gender is changed to ‘female’ based on the surgery’s findings of her having been born with both male and female genitals, using a never before used (1980s) Dutch law.
  • Beginning of pain and numbness sensations on right side of the body.

2013

  • Multiple appointments with a Dutch surgeon who specialises in reconstructive surgery, to determine the possibility of reconstructing the (closed-off) vagina.
  • MRI scan at the MST hospital in Enschede. Radiologist concludes that there’s no sign of intersex.
  • The surgeon refers Maya back to the VUmc gender team.
  • Maya moves to Germany.

2014

  • A reconstructive surgery is agreed upon with a German surgeon, but the surgery confirmation never comes and calls to the clinic go unanswered.
  • Multiple appointments at the university hospital of Tubingen. Physical examination by surgeon. Blood test: shows 46,XY pattern for white blood cells, normal SRY.
  • Another MRI scan is made, radiologist report indicates no signs of intersex.

2015

  • Appearance of linea nigra on Maya’s abdomen. Multiple appointments with gynaecologist.
  • Two MRI scans. The same radiologist first sees a healthy vagina, the second time no vagina or signs of intersex are seen.
  • Appointment at new endocrinologist. Multiple hormone level tests, with and without taking artificial estradiol. Maya’s estradiol levels without hormone therapy are found to be normal female levels.
  • Presence of at least one functional ovary is presumed, along with a monthly cycle since the age of 11.
  • Maya no longer takes any form of hormone therapy.

2016

  • Linea nigra vanishes.
  • Maya awaits updates on a possible surgeon contact.
  • Monthly pains are becoming very significant, along with increasing numbness in right leg.

2017

  • Surgeon appointment, with Maya referred to an intersex specialist. Surgeon is uncertain about Maya’s intersex condition.
  • Monthly numbness and pain spreads to the entire right side of Maya’s body.

Saturday, 20 May 2017

Accepting help also means accepting that one has a problem

The past days has seen the numbness and pain in the right side of my body virtually disappear again, as my body goes through the motions of its monthly cycle again. It's a nice week or so of respite from having to worry about me turning into a permanently crippled person. Because of this variation in the symptoms, I do not expect that the MRI scan in two weeks will show anything to be wrong with my brain or spinal column. Best to be safe, of course. Plus it's nice to have that tenth MRI scan achievement unlocked, I guess.

As the scope of the medical and psychological help which I'm receiving slowly expands, I now find myself with a psychotherapist for regular therapy for my PTSD and other traumas, another psychotherapist who acts as a medical coach to handle contact with clinics, doctors and so on. Getting proper communication out of this intersex clinic - my next target - is slow, frustrating and thus I'm glad that I now have someone who is doing all of that for me, after twelve years of me dealing with it directly.


All of this means a large number of appointments and both help, but also the constant confrontation with my problems. From PTSD, various traumas and other psychological issues which have build up over decades, to the twelve years of horrible frustration and maltreatment of my intersex condition which may now be causing these physical issues that are causing me chronic pain. Even without an active eviction case against me this would be a lot to deal with. Add that to the mixture, realise that a negative outcome in that case may push me to try my luck at suicide again, and the need for intensive therapy and other forms of support becomes very obvious.

Without the stabilising influence of my day job and my friends, I would most likely already have been put on suicide watch. As things stand, I'm already skirting pretty close to the point where my therapists would feel obligated to interfere.


Here again I am confronted with the stigma of mental illness: you cannot see it, so it cannot be there. Me feeling suicidal must therefore be a conscious choice, ergo I can just stop thinking that way. The reality of the matter of course being that I am not actually a person suffering from depression, but merely someone who has felt so threatened and has been repeatedly attacked by others for over a decade, that it has made the thought of continuing to live... unpleasant.

I just want people to leave me alone. I didn't do anything wrong. People should just do their job and act like decent human beings. The past twelve years have shown to me beyond a shade of doubt that most people are (unknowingly) evil or just don't care. This is not the world I'd want to live in. Thus I focus on the decent human beings in the world, but one can only ignore the former nightmare world for so long.


Maybe I just have terrible luck and have come across every single terrible excuse for a doctor, psychologist, landlord, 'friend' and what not. While going through therapy, I have to go back to parts of my life which I do not care to remember, as well as some parts which I would love to go back to.

I still don't know what happened when I was a young child that was traumatic enough that it completely changed my behaviour. All I know is that my traumas likely started back when I was almost too young to remember anything. Likely someone did something to me, just like with what happened to my cousin when her uncle and grandfather couldn't keep their filthy hands off her body and those of other young girls like her.

It may very well have been that I grew up basically from the age of five with the knowledge and expectation that people are horrible monsters, who will always seek to take advantage of you. It would explain why I have seemingly always felt so apprehensive of others since the age of six. Even though I have been consciously trying to change this since I found out about being intersex in 2005 - pushing myself to return to that extroverted personality that I had as a child - along the way I come across the same traumas which pushed me into becoming introverted in the first place.


All I can hope for at this point is that I can at least win the eviction case so that I do not have to deal with that any more. I feel my life is complicated enough already at this point without others making it more difficult simply because they're greedy and care not about their fellow humans.


Maya

Sunday, 14 May 2017

Who'll catch me when I fall?

Last Friday I noticed that after a meeting at work, my right arm had begun hurting quite a lot, along with numbness and strong discomfort in the entirety of my body's right side. Including the right side of my face. Even though I had been dealing with numbness and pain in my right leg and arm in some form for the past months (and years in a milder form), this was a disconcerting new development.

I didn't tell anyone about this issue, just went back to my place and took one, then another ibuprofen (800 mg total). After about half an hour the pain had decreased significantly and with an hour I was almost feeling normal again. Before the pain started decreasing, I feared that it might worsen to the point where I'd collapse and find myself in the ER again.


The numbness and pain in my body's right side just keeps increasing. The past months far quicker than before, progressing from just the numbness in the leg for a few hours and occasional pain in my right arm to a full week of an unusable leg and currently near-constant numbness and pain in the entire right side of my body.

On Tuesday I had a neurologist appointment for this issue, after my GP reserved an emergency slot for me. I now have an MRI scan scheduled of my head and neck region (tenth MRI scan, yay), to rule out any possible issues in that area. The neurologist does however think that something like endometriosis is more likely as cause, considering the cyclic nature of the symptoms. My hope now lies with this intersex clinic with which my psychotherapist and myself have been trying to get into contact with for the past months now, without much success.

Maybe the MRI scan will show something, but most likely not. Meanwhile I'm taking ibuprofen like candy as it's the only thing which actually seems to do anything about the symptoms. Exercise seems to make the symptoms worse, but sometimes lying in bed as well, which makes it hard to find an approach which always works. I have started again on the anti-conception pill in the hope that if it's indeed hormonal, it will reduce the symptoms. I should know soon whether this theory is correct.

Meanwhile it practically feels as if my body is splitting into two halves, with the right side slowly shutting itself down.


I have to wonder what the impact of excessive stress on this all is, as I'm still facing getting evicted out of this apartment despite not having done anything wrong. Except maybe not complain enough, apparently. The thought that there are people out there who quite literally would be fine with me dying on the spot (which would be cheaper than an eviction), and that there's no home for me out there is more than one can humanly bear.

What'll happen when everything goes wrong? I already know that if I am forced to find another apartment, or even pay a large sum of money, it'll destabilise me emotionally in ways which are more than just frightening. There'd be a real chance of me committing suicide. I know from experience that all it takes is to have access to an easy and acceptable method.

After months of excessive stress I don't really care that much about whether I survive or not. Between getting evicted, my body slowly failing and the intersex clinic between completely unhelpful so far, I don't have anything to live for. Not really.


I love my work and my hobbies, but it cannot stand against the incredible pain of being alive if all it means getting punished over and over again. Punished for being born intersex. Punished for following the rules. Punished for being an abject failure.

I expect to be evicted. I expect my body to fail me probably this year, rendering me a cripple or killing me. I don't expect there to be any help. I do not have the energy to fight to survive any more. I cannot deal with an eviction. I'd just give up. Live on the streets until I die. Because giving into fatalism is the only thing which I can do, along with punishing this horrible body of mine by hurting it for hurting me.

I need others to give me hope again. To make me see that life isn't only about suffering and death. That this body of mine is okay. That there's nothing wrong with me. That I do not have to fear landlords randomly kicking me out of rundown apartments for daring to complain about issues. That I do have a future.


I want to believe, but I cannot. All that I know, all that I understand, and all that I long for is this incredible sense of peace which I felt during those moments before I tried to commit suicide. I wish I hadn't failed. I so wish it all had ended already, six years ago. I regret failing at that more than anything. Next time I'll succeed at committing suicide. I promise.

So that I may finally find peace.


Maya

Sunday, 30 April 2017

Why a home is more important than a body

At the age of almost two years old, I first lost my home. On Good Friday the farm house in which I was born burned to the ground, leaving nothing but ash mingled with the bones of the cattle who didn't manage to escape. The following years I lived with my family in a trailer while the new house was being constructed. Two years later this was completed and we moved into the new house as the trailer was removed.

This house I lived in until 2003, until my father wanted to divorce my mother so that he could marry the woman he had been cheating with for months. He also managed to pester my mother out of the house, leaving me and my younger brother with the choice of whom we wanted to stay with. Both of us went with our mother, moving into a small house in the nearby city.

While living at this house, I for the first time felt what it means to lose one's home. Within months, my father and his new wife had redecorated and changed the house in which I had been raised so that I could no longer recognise it. My father also disowned me and my younger brother, so that there was no way back for us any more. He might as well have burned the place to the ground.


After this we moved to the other side of the country, then I moved to Canada for a short while, ended up back in the Netherlands, basically couch surfing because I had no place of my own, until ultimately ending up trying to commit suicide. After that failed attempt I stayed at my mother's place for a while, before getting a job and apartment.

Sharing this apartment with a less than emotionally stable person, I suffered months of physical and verbal abuse until I was force to basically run out of the door. When I returned a few months later, all of my belongings were gone, and nobody could do anything.

This led to me living for a while again at my mother's place until I finally moved to Germany, where the first apartment was uninhabitable and the second (current) one sees me currently dealing with an eviction case.


I first started dealing with my intersex condition back in 2005, shortly after moving to the other side of the Netherlands. Not having a body and a home have been central themes for those more than twelve years. Yet I would definitely say that not having a home is the worst, by far.

Even though I do not know exactly what my body is and why I'm having chronic pains, I'm still not fully crippled. I can still work, visit places and have fun with my hobbies. Without a home all of that is at risk. With the constant terror of a pending eviction any motivation or hope on a better life gets drained. There's no quiet, safe place to retire to, as it's a constant concern.

Not having a home definitely causes me far more stress than not having a body. Physical pains can be ignored and despite all of the issues it gives me, my body is still in relatively okay health. Psychological pain cannot be ignored. As minor progress got made over the years on my intersex case, much of the uncertainty got removed. With two weeks I'm seeing a neurologist for the numbness and pains in the limbs on the right side of my body. Physically things will get better, probably.


Yet none of that helps me with getting a home. Even though I have done nothing wrong, depending on how the opposing side plays it, I could still face eviction. As I noticed over the past months, whenever I force myself to find a new apartment or better, it causes an incredible amount of stress and even minor setbacks or irregularities are likely to trigger a suicidal depression. Two weekends spent crying, clawing at my body, thinking of plunging sharp knives into my abdomen or cutting my wrists, etc. is more than enough.

Anyone who feels that I should just 'suck it up' and go through all of that again and maybe truly end up trying to commit suicide again can go get a can of gasoline, pour it over themselves and light a match. Maybe then they'll be able to sympathise with the psychological pain searching for a new home puts me through.


The funny thing is that even though I'd be perfectly fine with being put to death right now instead of facing this drawn out eviction case, I'd still want to continue living and work on becoming happy. I guess I'm just tired of always fighting. Kill me. Let me live. I don't care. Just don't make me suffer any longer.


Maya

Friday, 28 April 2017

Don't call me a liar

The past months have given me ample time to think and reflect on things, including the specific reasons why the eviction case I'm dealing with upsets me so much. It being baseless and an aggressive attack to shut down tenant's rights is pretty bad already, but there's something more. Something far more fundamental. Something about me being a liar.

What's the central theme about the past twelve years that I have struggled to find recognition and help for my intersex condition? Being called a liar. About making up being intersex, having female genitals. Lying about having a period and monthly pains. Lying about worsening chronic pains. Even as the physical evidence kept mounting, the accusations kept coming.

The eviction case is similar: I have identified a problem to the best of my abilities, followed all the rules and then get assaulted regardless, called a liar and a thief, and have my integrity as a person cast into doubt again.

Clearly following the rules is meaningless. Being a nice person only helps others.

The only truth which matters is the one which those who are more powerful can force upon those who are weaker.

Ergo, I'm a liar and deserve all the misery which comes my way.


Maya

Saturday, 22 April 2017

The meaning of life when on death row

Imagine: there are two worlds, two realities. One is accessed via the internet-connected laptop you have, offering you contact with millions of people, access to a near-infinite amount of information and glimpses of a hope-filled and bright future. The other reality is the one you find yourself in whenever you aren't engrossed in the former world inside your laptop.

The former world fills you with hope and joy. The latter is the bleak reality of death row.


For years now I have had recurrent dreams in which I am walking through a crowd of people, all apparently gathered for a party or similar. They are busily talking with each other, all engrossed in whichever topic they're talking about. I do not talk with anyone, or even try to talk with anyone. Throughout this, I know with absolute certainty that come tomorrow, I will be executed, ergo why would I bother?

In these dreams, every time that I begin to feel interested in something around me, the feeling is immediately crushed by the bitterness of the futility of it all. Tomorrow I will die. None of what I do right now matters. Yet nobody around me can even begin to understand what I am going through. If they were interested at all, which none of them appear to be. I feel like I'm already dead and just wandering through the world of the living as a ghost.


I think that for me it all started around the time that I finished high school and before my parents divorced. That was the point where I began to fully lose any concept of 'self', or more specifically of what it meant to have a body. After being forced to move out of the house in which I had grown up, I fell back into myself, neglecting my body beyond the most basic needs to feed and clean it.

During the last year of high school I had finally found out one reason why I wasn't like the people around me, when a giftedness study at a Dutch university showed me to be both a 100% visual learner and highly gifted individual. Unfortunately this knowledge didn't come with associated help with how to deal with it, nor did it tell me what I needed know about what my body is.


For some reason it feels as though back when I still thought that I had a male body I had more freedom. Ever since I found out about my body being hermaphroditic have things gone from bad to worse. Yet I had to find out. I had to know. I did not expect to be punished for this. I did not expect that it would result in me suffering horrible psychological trauma, rape, beatings and getting locked up for crimes I did not commit.

That day in early 2005 when I first travelled to the gender team at the VUmc hospital in Amsterdam feels like the day when I got arrested and locked up for the crime of having been born like this. Over the course of the following years I went through countless appeals and medical examinations, all in the hope to overturn these charges of being transgender, crazy, etc.

Yet none of it seems to have changed anything. None of it matters. The medical evidence is still deemed contradictory, despite my body clearly not being male, what with a primarily female phenotype and natural female hormone levels and even a monthly cycle. It's all irrelevant. I'm still not getting help, nor will I ever be released from death row.


Dealing with the current eviction court case and the bleak prospects of finding a home only serve to reinforce what I already knew years ago: innocent or not, I will be executed. Soon the extra time I had for appeals and help will run out and I will cease to exist.

As a result I also know that none of what I might want matters, nor do any of my plans and hope for the future matter. Why would I work on any projects, or be really invested in work or getting money back from taxes, or feel remotely interested in pointless things like vacations, relationships and the like?

It all feels exactly like those dreams. The world around me goes on, but before long my existence will be snuffed out.

And none of this will matter.


Maya

Saturday, 15 April 2017

When you no longer care whether you live or die

Last week's eviction hearing was as hateful as expected, with the opposing side feeling eager to see me vanish and self-congratulating on doing such a good job at being absolutely miserable examples of human beings. In this I am up against one of the biggest real-estate companies in the area. They maintain their claim that the rent reduction was only for three months (not true), and that there are currently no remaining issues in the apartment. Which is also a blatant lie.

Naturally I got offered the chance to accept a humiliating surrender, pay up thousands of Euros, including the costs for their and my own lawyer. I will keep fighting, however, if only for the small chance on justice being served. I did absolutely nothing wrong, after all, and being forced to move will likely cause me to die.


Before the whole eviction thing started, my condition could be described as 'stable bad'. With thoughts of suicide being quite rare and still easy to contain. At this point my condition is not stable at all and my thoughts keep dipping into dark, suicidal thoughts every few minutes or so. Even just writing this, and having to accept this truth just caused me to lose self-control, scratch at my neck with my fingernails and hurt this body for being the cause of it all. Then start crying for everything about life just hurting.

Even though I have my psychotherapist backing me in that I cannot possibly be forced to leave the premises, the stress is still there, along with the realisation that I'm once again confronted by 'people' who couldn't care less or would even rejoice if I were to commit suicide. So long as I vanish out of their miserable lives. It's no different from those countless doctors and psychologists I faced over the past years.

The previous weekend I was away with my colleagues on a company-sponsored trip to the nearby Schwarzwald. On the way to the hotel with the bus I couldn't help but stare sadly out of the window, seeing countless houses, realising that everyone is apparently living in an apartment, with each house split up. Realising that apparently I'm so broken that I cannot be like others here and just accept living together in a shared house with others, ignoring noise, stress and frustrations.

It's why I know that Germany is the wrong country for me.

All I need at this point is for me to lose the eviction case to convince me that there's no point for me to continue living. I have spent the years since my last suicide attempt in 2011 trying to convince myself that life can be worth living, but this situation and the hatred which I must suffer from doctors, psychologists, landlords and others for merely existing is just too much.

I tried. I did my best. It's okay for me to just give up now. It's not my fault that there's no place for me in this world.

I want to believe it's not all my fault.

Is it?


The next months will find me dealing with neurologists, for the worsening loss of sensation in the right side of my body, travelling to another clinic for an appointment with another specialist and probably start more intensive psychotherapy from a second mental health professional. This is already far too much to deal with. I honestly cannot deal with anything more.

I'll have to survive somehow. Because others feel I must not die.

I no longer feel that way.


Maya