On seeking help, finding pain and running away

Today was the appointment I had been working towards this year ever since I sent that first email to my family doctor, containing a desperate request for help with my medical situation. Now, months later, my body has developed all of the symptoms of a pregnancy beyond the actual zygote, embryo or related. I have undergone two sets of MRI scans and multiple blood tests. I have also learned that for all intents and purposes a rudimentary vagina is being discarded as 'not a vagina'.

It was a bit of an unusual appointment regardless, as it coincided with me being sick since Tuesday, with something which very much feels a bit flu-ish, but probably has a significant stress and general emotional exhaustion contributing to it as well.

In hindsight we could have skipped the trip to the gynaecologist, as his findings contributed very little to the report my family doctor received beyond the findings of the blood tests. The radiologist's report was very brief as well, just listing his basic findings, including the presence of a normal penis, tiny prostate and most importantly no vagina. This irritated me, because during the two conversations I had with this radiologists he had made it clear that with the first scan he had simply seen a normal vagina. Only with the second scan had he seen that this vagina doesn't have the normal lining of tissue on the inside.

At the very least one could have the decency to call this a rudimentary vagina, as the surgeon who operated on me four years ago in Hamburg had done after first cutting me open to explore the area in question. Such a terse description from this radiologist then doesn't help much. At any rate the images of the second MRI scan should still be usable for a surgeon. This would seem to be the next logical step as neither the radiologist nor the gynaecologist were able to explain just why my body is showing all the hormonal signs of being pregnant.

Beyond this, my family doctor and I also discussed the other pains I'm experiencing. The one in the vaginal area is also something which a capable surgeon should be able to explain when surgery is being performed. The pain in the front of the lower-right abdomen worried my doctor somewhat, as it's right in the location of where the appendix is located. It's possible that it has been inflamed for a few years ago. Not seriously enough to cause acute appendicitis, but enough to cause pain and explain the sensitivity to touch in that area. I'm supposed to make an appointment with a specialist who will then examine this further, if only to exclude this possibility.

That then basically leaves me and my doctor with the seemingly almost impossible task of finding a surgeon who is well-versed in reconstructive surgery, preferably related to intersex conditions. I have one name of a possible surgeon at this point, but the thought of actually going through with contacting said surgeon fills me with a feeling of complete dread. It's something I can do, sure, but only by deadening all emotions and feelings while suppressing any and all memories of previous, traumatic attempts. It's not a matter of hope, or the expectation of finding help, but the mere going through the motions of a senseless ritual with always the same useless outcome.

After today's doctor's appointment I do again find myself struggling against suicidal forces inside my psyche. The feeling that I cannot trust anyone, never rely on anyone and never will get help or answers. That I'll forever feel like this freakish horror, pieced together with random body parts without any sense or reason. Just a cruel joke for the entertainment of psychopaths and the like, as I slowly inch my way once more towards just ending this miserable game of survival.

Ignore it. Run away from it. Ignore this body. It will all be fine. Just pretend it's all not there.

The one thing I must say about going through one trauma after another for over ten years straight is that it gives one's mind an incredible ability to deal with such traumas, allowing one to push away and ignore anything that threatens one's existence. That is, until one tries to sleep or stumbles across any triggers which release all the pain again. For me confronting this medical Limbo I have found myself in is pretty much one big trigger. After an appointment like today it's pretty much only this small voice of sanity and reason which keeps me from going completely over the edge. Every upcoming doctor and surgeon appointment will do it to me again. Over and over.

I'm playing with my life here by trying to get help, yet I am left without a choice. For there is only survival or death, no life. Only normal people get to actually live their lives, everyone else just has to suffer through theirs.


Maya

The beautiful agony of innocence

Recently I have had a chance to watch two Studio Ghibli films I hadn't seen before, being 'Tonari no Totoro' ('My neighbour Totoro') and 'Majo no Takkyuubin' ('Kiki's Delivery Service'). To me films like these perfectly symbolise all that is awesome about being alive. No matter the adversity, there is always someone or something to help right things, and good actions are rewarded in the end. Even in a more serious Ghibli film such as 'Sen to Chihiro no Kamikakushi' ('Spirited Away'), these themes hold true. These make it very welcome, almost magical dreams to slip into.

Of course, Studio Ghibli hasn't just made innocent, everything-will-be-fine films suitable for children and adults alike. I saw 'Hotaru no Haka' ('Grave of the Fireflies') years ago for the first time. It was a heart-wrenching, soul-destroying experience. From the very first opening scenes onwards it's an experience of watching the last vestiges of hope get sniffed out through the ugliest sides of the human psyche until there is quite literally nothing left any more.

Rhyming such incredibly beautiful innocence and joy with utter bleakness and despair as being part of the same world and intrinsic aspects of the human psyche is almost too much to bear. This world is truly hatefully ugly and astoundingly beautiful at the same time, while populated by individuals capable of the most heart-warming humane and incomprehensibly evil acts, often within the same breath.

Innocence is in many ways the most desirable point to achieve in life, yet so frighteningly easily shattered. A recent example of this was when the president of Nintendo, Iwata Satoru, died. Trying to rhyme the image of innocence projected by the video games he and his colleagues, like Miyamoto Shigeru, concerned themselves with for decades with the brutal reality of a medical emergency and sudden death is what upset countless people all around the world upon receiving this sad news. Someone who is basically a good person who manages to bring a smile onto the faces of many people cannot possibly die, right?

This transiency and fragility of everything that is pure, innocent and heart-achingly beautiful is taught to us as an unavoidable fact of life, leaving us to embrace the gritty, bleak and uncompromising reality that remains as the only reality that will ever always be.

Part of me wants to believe so strongly that one can keep dreaming and live innocently and happily like this forever. That there is enough goodness and humanity in people to make it so that no child's dreams and innocence will ever have to be shattered again.

Yet no matter how fervently one may wish for this to become reality, the harsh truth will likely remain that the only way we can experience innocence and happiness until the very end is how the little match girl from Hans Christian Andersen's short story managed it.


Maya

When your mind tries to convince you life isn't worth living

How I get through a day is fully dependent on this little energy bar regulating my sense of well-being. Depending on how well I slept, it can be either pretty much full, or pretty drained. Subsequently every stressful and negative thing during the day knocks off a bit from this bar. When the energy level becomes low, I have trouble staying positive and engaging with others. When it hits zero, life isn't worth suffering through any more. Unfortunately for me, 'stressful' means most noises depending on the situation, especially when I try to concentrate or relax.

Today started off pretty okay. I even got an appointment with my family doctor for next week as after a month things at my gynaecologist's office finally seem to have trickled through. That's when the negative stuff happened, though. Mostly it involved getting hit by some finances-related letters, which I know are unfair/incorrect, but which I'll have to slowly work my way through over the coming weeks most likely until matters are resolved there.

Suffice it to say that my starting energy levels have been rather low the past weeks. I had to call in sick on Monday because I was barely able to get out of bed. Tuesday was okay and on Wednesday I even managed a work-related trip to Munich which went very well and had me feeling quite positive. On Thursday I felt extremely dizzy as I got up, but persisted and things went okay afterwards. Today I just mostly feel exhausted.

Throughout it all aside from a few moments I could feel part of my mind being occupied with just pain. The pain of living, of existing, and lamenting how unfair everything is in life. I so loathe this part of my mind. The more negative things happened and the lower my energy levels got, the more persistent it got. Right now I know it's very strong because the threshold for self-mutilation is very low. Basically it takes very little for me to use fists and such on myself. I can only resist the action, but I do not actually control the motivation behind it. Most of that motivation is simply the urge to destroy this body and with it end my existence.

I think I wish most of all that I didn't live in this apartment where I simply cannot get the rest I need to feel safe and recharge my energy, and that this whole medical/intersex business finally bothered to resolve itself. I'm sick of both items and through it, sadly, somewhat sick of being alive as well. Maybe there are ways for me to not feel so utterly powerless to resolve such points in my life.

As I have mentioned before: merely surviving doesn't make a life worth living. It's just stressful, day to day survival with only major accomplishing being the fact that one hasn't died or become too maimed yet. It also makes me resort to venting on my blog like this far too much and making others feel worse in the process.

I'm sorry.


Maya

The hardest thing for me is to admit to being sick

Many years ago when I was still a child, being sick was almost something to look forward to. Not only did you not have to go to school while sick, but you got to spend all day lying in bed or on the couch, watching television, playing games and reading books. This all made it very easy to ignore the parts involving recycling one's last meals into a bucket and such unpleasantness. It was all basically just a special kind of holiday.

Nowadays I kind of wish that things were that easy. After spending the whole day at home after calling in sick at work this morning, I found myself drifting between my bed for frequent naps and reading, and my computer to entertain myself with videos, as well as to not be wholly off-line today. My general sensation today was just one of feeling miserable, with an incessant headache, feeling of malaise while also feeling too restless to properly nap.

My mind just kept churning through past, current and upcoming events, as well as happenings at work, with my own medical situation and what not. Then when I almost fell asleep a few times, the neighbour upstairs would start dropping things on the floor or something, loud enough to jar me back to full awareness despite even the precaution of wearing earplugs. Nothing is as fun as feeling sick, exhausted and being kept awake with environmental noises.

No, being sick was more fun as a child. Everyone was told to be quiet around you while you were sick and you'd get every opportunity to rest and sleep. The worst feelings I remember from being sick were those after throwing up and those of being bored after spending a few days like that in bed or on the couch. Not having to take care of your own food and such while sick was much better as well.

Last week I first began to realize that I wasn't feel so well. Nearly keeling over after one meeting due to a severe wave of dizziness was one hint. Feeling exhausted and sick like a dog on Thursday and Friday was another. On Saturday my body practically shut down as I spent most of the day drifting in and out of sleep. Sunday was much the same. Today I finally gave in and called in sick at work.

Yet already I can feel my many responsibilities, worries and duties tugging at me. I do not know how long I should be resting until I am 'fine' again, because I do not remember any more what this feels like. Just trudging through every day in a stressed and exhausted state seems to be the new normal. Only when my body and/or mind starts shutting down is it truly time to take a breather. For a day or so.

Still too much left to be done, and too much to agonize and worry about...


Maya

Making up the medical balance, or: please help me find a surgeon

A number of months ago I set out to once and for all get the matter of my intersex condition diagnosed and treated. Or die trying, if you want to be dramatic.

Results have been mixed, with some of the (expected) negativity from physicians, but also some unexpected positive events. I'm frankly completely sick of my gynaecologist's attitude towards my case, treating me more like a confused if not crazed patient instead of a human being in need of real medical help. This also in light of the unexpectedly positive outcome at the radiologist, who not only went the extra mile by having a second MRI scan ordered to confirm some nagging doubts, but to also have this scan performed at such a detail level that it would be usable for a surgeon to plan a surgery with.

Summarizing the results: the gynaecologist ensured me that the blood tests showed only normal values for all hormones and markers. The radiologist confirmed the presence of a vagina and indicated both that a tumour might be at the root of my symptoms and that I should talk with a surgeon about reconstructive options for this closed-off vagina, as well as to get some solid answers about my internal anatomy this way.

The current symptoms I'm dealing with are still pretty much the same as when I started this attempt for answers. The original lower abdominal monthly pains and cramps have subsided significantly with the formation of this linea nigra line on my lower abdomen. I also may have to start buying new bras soon if my breasts keep growing at their current rate. Pain in the vaginal area is still there, albeit less severe. Beyond these clear symptoms I also suffer from regular nausea, hot flashes, exhaustion and had to put myself on a strict diet to counteract the weight gain I was/am experiencing.

In short, my body still insists I'm pregnant and it's debatable whether this ~1,000kcal/day diet I'm on isn't merely masking the weight gain I was experiencing. I do feel better now that I have lost about 4 kg over the past weeks, though, aside from the exhaustion. My lack of energy might also be due to stress and the severe lack of proper sleep I have been getting over the past months, however. As far as diagnostics go, I'm pretty much still at the level where I was about eight years ago.

At this point neither my gynaecologist nor family doctor appear to be in any kind of rush in order to help me. With each passing day I find it harder to believe that I'll ever get an appointment with such a reconstructive surgeon, let alone receive proper treatment for my intersex condition. To me it all kind of feels like a reconfirmation of what I knew a decade ago already, yet without the hope that everything will be fine now.

Please prove me wrong.


Maya

On being a weak strong person

There are many times when I have to question the concept of a 'strong' person, in the sense of being strong-willed and capable of enduring situations which will bring down most. To me it seems more that it's a matter of being better of suppressing trauma and its many unpleasant side-effects.

It's every time that stress, triggers or a combination of these erode this ability to simply suppress everything that's unpleasant and negative that one truly realize just how incredibly weak one has become. It doesn't make a lick of sense to me that I'm trying to injure myself with my fists or any item that's within reach. It isn't rational to imagine me crushing my own skull with my own hands or to otherwise terminate my existence in one final, definitive act. This whole urge to simply self-destruct is a weakness. It's a threat. It makes me into a weak person.

Am I then a strong person for resisting this weakness so long? Or am I a strong person for resisting attempts at brainwashing, as well as other attempts at making me believe I am something which I am not? For having the strength to persevere when all one receives is criticism, abuse, rejection and ridicule?

I honestly wish that I didn't have to keep trying to keep a firm grasp on the truth as I know it. Even as the medical world around me ever so slowly inches towards accepting me as an actual hermaphrodite and grudgingly admits that maybe seeing a surgeon about reconstructive surgery could conceivably be an avenue worth exploring, the one thing which I find myself craving for the most is to feel like I'm actually being treated as a human being.

Yesterday I contacted my current gynaecologist's office about the results which he was supposed to have sent to my family doctor. I was informed that he had not even written his findings, but he would do it the same day. I will see whether he does so this week, but I have already decided that there's no point to ever returning to this gynaecologist, for the simple reason that he has never truly shown that he believes or trusts me. During the last appointment I had the clear feeling that he just wanted to be rid of me as soon as possible and seemed rather uncomfortable during the entire appointment. His response to the radiologist's confirmation of me being an actual hermaphrodite was met by surprise, further revealing his true thoughts about my medical situation.

My family doctor also asked me recently whether I had made progress with this psychologist I was supposed to have an appointment with. I think I'll just leave the answer to that question until she asks me again during a next meeting. It's not so easy to explain to someone without any actual experience with the events which led to my current traumas why talking with someone who is similarly inexperienced is rather pointless. When I look at those people I call friends, I can state without any shred of doubt that they understand my situation sufficiently that I do ever have to explain myself. That's why they're my friends I guess.

When one then talks to a psychologist who has no clear reference for these traumatic events, you just end up trying to explain why these events were traumatic to begin with, which is a rather futile task. Very few psychologists have ever seen or talked with an intersex person, let alone handled a case like mine. To them it's like a whole different world, much like how their point of view is so completely alien to myself. After countless experiences with psychologists and psychiatrists, I can frankly say that with very few exceptions, they should stick to dealing with more mundane issues as they can do much more good there.

What I do worry about there is that by rejecting psychological help from a 'professional' like that, I again get labelled a 'rebel', 'difficult' and possibly even reinforcing the idea by some that I'm just looking for confirmation for something I wish to believe in. Similarly with this whole switching to another gynaecologist. So I don't like what a specialist says, so I will just keep trying others until I can find one who is fine with just repeating these delusions I wish to so dearly believe in.

The ironic thing of course is that it's just what these people wish to believe in, meaning that my actual excuse of just trying to find capable, sympathetic specialists for something which ultimately is still a very intimate and personal issue, simply doesn't register for them. It's always possible to twist and distort interpretations until it fits one's expectations. It's a weakness I have had to deal with a lot over the past decade as well, becoming very evident in my severe lack of self-esteem and self-worth.

Do I actually believe that I'm a hermaphrodite? Rationally, sure. Emotionally? I'm just confused and traumatised as hell, without any clue to what is actually going on. Hence my emotional side trying to destroy itself through self-mutilation and suicide. I cannot do much about that beyond simply not giving up on this decades-long path which should hopefully lead me to answers and salvation, instead of the certain doom which others have predicted for me on this course. Something which part of me is convinced of as well.

Being foolhardy and desperate can be assets, I guess.


Maya

Pain wrapped in human skin

Earlier today I watched a video log by a scientist I have followed for a while. In it he described how after a long struggle his father had finally succumbed to the cancer he had been diagnosed with many months earlier. He detailed how it had affected him, even traumatised him in some ways, but also inspired him to learn more about cancer and how to defeat it. It was a pretty heart-rending video to watch and I found myself very much in tears by the end of it. The raw pain felt in his words truly resonated within me.

This pain is what I'm feeling so strongly inside of me, even more so when stressful situations bring it to the surface, such as most recently due to my own medical complications and cancer scare. Especially the past weeks I have noticed just how strongly it affects me. In some ways it makes me into a person I can appreciate, someone who is more productive due to being focused on distractions like projects, yet on the other hand it also turns me into a complete emotional wreck.

When I feel so much emotional pain an instinctual response which has been well-honed over the past decade kicks in, numbing emotions and feelings. Most importantly it also cuts off any access with others, discarding them as threats, superfluous or simply potential trigger sources. Emotional deadening is the goal, until all that is left is just this contained core of pain, wrapped by this layer of human skin which is the apparent guise of my body.

That's all I am at this point: just layer after layer of intense, excruciating pain, barely kept in check by emotional safeguards developed over more than a decade of pure survival. Next week will be just another chapter in this pointless saga, as I try to force my gynaecologist and family doctor into doing their jobs and keep what may be the last possibility I have of a positive medical outcome from slipping through my fingers.

There's just me. Surviving. Other people may just as well be mere figments of my imagination, aside from those who seek to harm and hurt me. There's no salvation. No help. No hope.

Thus I will keep putting up a brave face as I venture into the world again come Monday, yet my outward appearance is just a show without substance, for inside I'll forever be trapped inside this personal hell of pure pain and agony. I ache to rip off this hideous skin to show everyone the true pain inside and make them understand just how much I am suffering. Yet I cannot. Only those who have suffered this much can understand, and everyone of us suffered so much because we're helpless to change anything.

Please let me end this pain. Forever...


Maya

A thunderstorm to illustrate my current situation

As I type this it's been rumbling outside for a while now, without much rain to show for it. Meanwhile temperatures remain high, making it abundantly clear that we're dealing with summer here.

Today has been a weird and somewhat unpleasant day. First there was me spending only the morning at the office, as I really wasn't feeling so well. Taking the day off early, I went home, tried to eat something and took a three-hour nap, waking up half-way through covered in sweat and feeling like I had just gone through something really unpleasant. Worse, upon arriving home I began to feel this strange tightness in my upper chest, which makes breathing difficult and painful. Even after the nap it's not gone.

I think it's just a result of anxiety. Today I was waiting for my gynaecologist's office to get back to me on the examination results which my gynaecologist had said he'd be sending to my family doctor. Everything there is hanging on him sending these results. To me it's just a confirmation that all physicians dislike or simply do not care about me. Also that I will not get medical help this year either. I may have to call the gynaecologist's office tomorrow.

Moments ago an ambulance and emergency doctor's vehicle arrived in my street, apparently for a situation at the next-door apartment block. It's always somewhat surreal to see such a situation develop. Seeing it brings back mostly unpleasant memories for me.

Staring at this situation outside I heard the upstairs neighbour stumbling about again. It occurred to me that this coming winter I'd have to deal with not just that noise, but also from the heating system. Maybe it's just that I'm feeling really tired, but I felt panicked at this thought. Even suicidal. As in, please rescue me from this place and get me to somewhere where I don't get constantly startled and have my anxiety levels maxed out every waking moment.

I'll have to see how I feel come tomorrow. The pain and pressure on my chest is still there, and I feel nauseous, as though I'm on the verge of throwing up.

Maybe it'll start raining properly soon...


Maya

I'm a selfish person

A number of years ago a former classmate from high school sent me a friend request on a (now dead) social network so that she could get back into touch with me. We chatted a bit, then for a number of days nothing really happened. I was living my own life, she hers. Then I got a message from her telling me that she would be removing me from her friends list. Her reasoning was that my posts (mostly links to my blog) were upsetting to her, and I hadn't even bothered to comment on or congratulate her with her new baby.

This was hardly an isolated incident either. People breaking off contact with me seems to be about on par for the course. Whether it's just posting my blog updates, people finding out about my intersex condition (at least one guy really got angry at me for that one), my suicide attempt a few years back (people don't like suiciders much), or simply my apparent lack of interest in their lives. The reasons are legion. So are the accusations.

Some of the fancier things I have been called include 'selfish', 'self-absorbed', 'obsessed', 'crazy', 'health freak' and 'emotionless'. After the most recent occurrence of this I have been really giving this a great deal of thought in order to put together a coherent thought on this without having to resort to either apologizing, a counter-accusation, or plain grand-standing.

The main thought I ended up with is that yes, I am in fact pretty darn selfish. The thought immediately preceding that is that I have a pretty good reason to be selfish, as this is another way one could refer to the act of surviving.

From spending roughly fifteen miserable years trapped in a body and mind neither of which I could comprehend, to find out that I was deceived about my true nature, only to end up in a prolonged war with the world's physicians, with both sides battling over the question of which organs I actually have, meanwhile having to suffer countless attempts at brainwashing me into believing that I was something I totally am not, countless humiliating physical examinations and the outright conclusions by the hostile side that I was just plain freakin' crazy.

This placed against the wonderful background of my parents divorcing, moving around half the Netherlands, then to Canada for a short while and back again, until finally permanently fleeing my country of birth in the hope that with that I'd at least have escaped the worst hell that way.

Any trust I had in humanity has been shattered. I feel relieved when someone ends up not betraying me. I am exulted when I get through an event without anything negative occurring. I rejoice when I do not feel like harming this horrific body of mine in any way or form for a day. I am amazed when I honestly feel like I do not wish to die if given the choice. Most of my days are filled with the grim realisation that people around me are out to get me, even as I struggle through the haze of false emotions flooding forth from my traumas.

I have said it many times before: I cannot interact well with others on a social level. Superficially, yes. After that, however, it requires me to do more than just emulate an emotional side and that's where the incredibly pain inside of me will come out. I noticed this most recently when I was just talking to a colleague who asked after the results of this MRI scan I had recently. Even trying to just keep things formal and keep any details, let alone emotions out of it, I noticed just how much I was struggling to contain the overwhelming amount of emotions I keep locked away. I'm sure she noticed it as well. I felt miserable for hours afterwards.

So yes, I am selfish. Fortunately there are many who understand this, such as my mother who has gone through her own traumas growing up. Also my best friend and others around the world but also here in the city. They understand the pain inside of me, whether through their own experiences, empathy, or both. They understand what I'm going through. That I'm still merely surviving, and that I just need the support they can give me while I keep fighting for my life. That even if I cannot give back the friendship and care they offer today, that I will not forget their kindness.

If wanting to live instead of surrendering to the inevitable makes me into a selfish person, then by all means, call me selfish. Why should I care about what they think of my life anyway?


Maya