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