10th MRI and an inflamed brain

Yesterday was a pretty momentous day, involving my tenth MRI scan in almost as many years. This one was also special because it was the first MRI scan of my head and top part of my spine. At this point every single part of my body has been imaged by an MRI scan.

Goal of this tenth MRI scan was to clarify whether or not the numbness and pain which I feel on the right side of my body is due to an inflammation or swelling in my spinal column or brain. One twenty-minute scan and a brief wait later, I got invited by the radiologist to have a look at the results.

Though the spinal column itself looks fine, with no obvious swellings or inflammation, the brain itself did show a couple of spots which might be inflamed or similar. It'll be up to the neurologist to determine whether these spots are anything to worry about.


It's still very probable that these numbness and pain symptoms are a result of endometriosis, which was the neurologist's second option as well. For this I need to see an intersex expert, which is a process which may take a while. Fortunately my medical coach is handling the matter of getting an appointment at the right person, but just making the initial appointment is taking months already, with the actual appointment maybe still taking another few months as well.

On the bright side, since I started back on the contraceptive pill, the numbness and pain seem to be significantly reduced. Aside from a couple of days during which my abdomen felt like it was rotting away and severe pain in the vaginal area, the only thing which I'm really noticing currently is an incredible feeling of exhaustion. Far more than usual.

I'm not sleeping well, naturally, and maybe this is just the point where the lack of proper sleep and the constant feeling of extreme stress due to the eviction case is finally catching up with me. For all I know this stress underlies these possible inflammations in my brain, courtesy of my immune system being undermined by the stress that I'm under.


In short I'm still left with many questions and many uncertainties. Hopefully at least some of it will work out over the coming months.


Maya

Having fun with electronics

Last year I noticed that my boss had two Gameboy handheld game consoles lying on his desk. When asking about them, I learned that they were the original 'family' Gameboys from the 1990s. They had served faithfully for many years, but unfortunately the years had taken their toll on them. Before they could be added to the retro gaming room at the office, they'd need to be repaired. I thus offered to repair them.

Fast-forward more than half a year, and I had not done so yet. Not because I didn't want to, or couldn't, but because I was struggling with depression, significantly worsened by the sudden eviction case against me. I wanted to be happy, to fulfil my obligations and have fun, but I simply couldn't.

These past weeks, however, things have been changing gradually. Even against the background of a forced eviction, becoming homeless, losing all my belongings and emotional destabilisation into suicide. Maybe it's just that I have been under so incredibly much stress the past months that I simply cannot care any more, thus learning to finally let go and not worry as much. Whatever the reason, I finally managed to fulfil at least my promise towards my boss regarding these Gameboys.


In the end it's an easy repair: disassemble the system, remove the rubber strip on the display's flatflex tape followed by heating it with a soldering iron to make the solder connections reflow and restore the pixel columns on the display. Then clean the contacts (both sides) with isopropyl alcohol and reassemble the whole thing again. Or put it into a new Gameboy shell, as the case may be.

Doing this kind of work is fun, and makes lots of people happy. I also recorded a video of the whole repair, which I hope to soon edit into a short video which I'll put on my new YouTube channel. I still have a Commodore 64 left to fix in my backlog as well, which I hope to get to soon as well, along with a number of other projects, including a robot cat, power COB LED module heatsink and power supply experiments, and of course the custom CPU architecture on FPGA project.


It makes me happy that I am now finally able to do these things, and have fun with them as well. Yet it's still hard to shake off the leaden feeling that I may only have weeks left to live, depending on the outcome on the eviction case and its effect on my emotional stability.

This week I sent an update to my lawyer that the owner of the building has seen fit to finally have some maintenance work performed on the building, which seems to have fixed the rusty water issue that existed from the beginning. That still leaves the incredibly noisy heating system and cold air pouring in from gaps around the windows during the winter, but it's a start, I guess.

I still hope that the building owner gets told off by the court, leaving me free to cultivate this small seed of normalcy that I seem to have found, as well as work out what I want to do with my future.


One thing which I have also learned from doing electronics for years is that it requires a lot of space. Buying that single-family home might be the only realistic way to move forward from here, yet there the medical issues take priority for now. I need to be healthy first before I take on more stress.


Maya

When others feel the need to push you closer to suicide again

Over the past months that the eviction case against me has dragged on, it has become abundantly clear that what is at stake here is not just a place to live, or even something as abstract as 'justice'. Nay, as evidenced by my own feelings on the issue, and corroborated by the reports from my psychotherapist, what is at stake here is nothing less than my very life.

The official diagnosis is 'latent suicidal depression', in that I will generally not exhibit any suicidal behaviour or tendencies, but that certain events can trigger these. Events such as the forced eviction in early 2011, which led to my first suicide attempt, and later coming very close again, when after a physician- and psychologist-provoked PTSD/DID blackout episode, I was forced to pay for damages which I did not remember causing.

Dealing with doctors, anything related to intersex, transgenderism and sexuality also carries a massive risk. Yet with therapy and a quiet, safe environment in which to recover I should be just fine.


My fear is that even after resisting the horrible stress of the eviction case it will still result in me being forced to pay tens of thousands of Euros, get forcefully evicted, or a combination of these. There's no guarantee or certainty that this will not happen. That's enough to make it into a constant point of negative stress which keeps triggering a suicidal depression. Not strongly, fortunately, but sufficiently to keep up a feeling of constant existential dread.

When I try to think carefully about my emotional state if any of those scenarios were to happen, I have to admit that without any external interference, I will most likely end up killing myself. And that terrifies me even more.


There's always this misunderstanding that mentioning one's suicidal feelings means that one is either mentally ill or is using it as a hostage-style threat ('give me what I want, or I'll kill myself'). The more reasonable explanation in most cases is that each and every person has a psychological breaking point: a limit to what they can handle emotionally and mentally. The closer one gets to this point, the more it hurts, in a way that's worse than mere physical pain. This emotional pain cannot be shut out or ignored.

Reaching the actual breaking point is even worse; to reach this point causes a type of emotional agony that's worse than any physical pain which I have ever experienced, which includes fun things like kidney stones, abdominal inflammations, crashing on tarmac at about 60 kilometres per hour and very nearly having various limbs snapped off like a twig. Those are child's play in comparison. The only thing that came close was this one severe migraine episode, which nearly had me begging to be killed. Yet that one passed after I finally managed to fall asleep.


I think I reached my mental breaking point quite a few years ago already, probably around 2008, when things went rapidly south for me, to ultimately hit the low point of that suicide attempt a few years later. I have not had any significant therapy since then, let alone found a quiet place to recover in. My emotional and psychological health have been hovering around that null point for many years now. And now there's this new threat which may push me far enough that I would be forced to experience that blinding, numbing pain again.

And why? I didn't do anything wrong. Nor was there any reason for those doctors and psychologists to punish, rape and torture me like that. I guess that based on those years of experiences I simply must conclude that there doesn't have to be a reason. Doctors, psychologists and others who hold power over others will simply get whatever they want, no matter the consequences.


I really hope that I do win this eviction case, merely so that I can continue to go on living. Things are finally beginning to look up for me. I think it would be somewhat tragic if this is where my existence were to end, if still understandable.


Maya

Understanding an intense hatred of sexuality

For the past years now, there have been a number of things which instantly make me feel sick to my stomach, but without knowing or understanding why. Usually this takes the form of people showing (intimate) affection to each other, but things like pregnancy also triggers this strong sense of nausea and dull headache. Something about it physically hurts me.

Not that it's something limited to just the past years, either. I remember quite well how at the beginning of puberty, I felt disgusted by these sensations of physical lust. I wanted no part of it, and sought to banish any of such feelings from my life.

Part of those feelings of disgust may have been because of some weird sexual experimentation and experiences before that. I remember showing behaviour that was definitely over-sexualised, while not knowing why or who had shown or taught me anything like that.

For some reason it seems to come down to whatever happened to me when I was about five years old. Whatever happened back then might explain why I showed such bizarre behaviour, a couple of years later. Behaviour which unfortunately led to things which I regret now, or which hurt me in ways which I cannot begin to formulate, such as getting raped by a 'friend'. Experiences which led to me hating sexuality and everything related to it with an intensity that is simply absolute.

When I can only summarise it in terms which generally upsets others, it makes me again feel like something else is broken about me as well. From presumably getting sexually abused as a child, to not being able to give sexuality a place as puberty came and went, to finding out about being intersex, but having to fight over what essentially amounts to my own sexuality with doctors and psychologists.

Ever thought about what getting regularly 'physically examined' in one's most intimate regions by doctors who couldn't care in the slightest about one's well-being would do to one's emotional health? I didn't, and now I regret it. Last time a doctor asked me, I refused to comply.


I hate men. I want to see them all die horrible, agonising deaths for the monsters that they are. I hate women for being dumb creatures who just go along with whatever men tell them to. I hate that I feel this way, and do not understand why I feel this way.


I try to understand. I try to dig into my psyche and my memories as I attempt to find some clue, some memory which might offer an explanation. Yet I cannot find anything. There are just these intense thoughts and feelings which seem to spring forth out of a part of my psyche to which I do not have access. It's like a phobia, but even stronger.

I do know that it's not something about individual humans. I do not have a problem with them. I just have an issue with sexuality, with the entire physical part. I know from what my mother told me that before whatever happened to me as a child, I was a carefree, open child who loved to hug and be hugged. Then practically overnight this changed; I shut myself off from the world and did no longer want to be touched. Only a couple of years ago did I reach the phase where I allowed my own mother to hug me again. With other people it's still complex and generally I will pull away from any attempt at physical contact.


I hope that through therapy and by hopefully soon reaching a more quiet period in my life that I will be able to access this part of my psyche and memories where whatever causes these super-strong sensations are located. Just ignoring it and pretending it doesn't bother me doesn't work, much like how I could not ignore getting physically tortured and beaten.

I would love to reach a point where I no longer have to feel this horrible again due to this 'sexuality' thing. Maybe it will even allow me to reach a stage where I would actually be okay with entering into a relationship: being able to trust another human being to such an extent that I would simply not feel apprehensive or terrified around them.

I might even let this person hug me, a lot.


Yet for now, I'm basically more of a really smart machine. A machine which does not try to feel too much, too often.


Maya

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.

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

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