Sunday, 29 March 2015

Boundless terror and the limits of Post-Traumatic Stress Disorder

To me, feeling 'safe' is something that's definitely weird and unusual. Being somewhere and doing something where I don't feel threatened or afraid that something bad may happen is something which I don't recall has ever happened to me in the past decades, or at least not since my early youth. What it also shows me is that while the terror my PTSD can evoke in me even when not explicitly triggered is practically boundless, there most definitely are limits to my PTSD. Safety is absolutely the keyword.

I feel safe at work, as there's nothing there that's frightening or dangerous in any way. Even having to work the weekend or most of the night to get a fix ready isn't something scary, just another interesting experience. If anything it just makes me feel safer because I know that people trust me enough to rely so much on me.

Outside of work I generally feel mostly safe as well. After having to rely on some of my friends here the past weeks to get some things done which would be very hard to do by myself - such as getting my broken bicycle to the bike store, or picking up a super-heavy package - I have come to realize that my fears that I was completely alone were unfounded and that nobody abandoned me because the perceived me as being weird, a liar, or worse. The fear of abandonment is really quite scary.

After my bicycle accident I feel that I have become more... serious in a sense. Before I'd try to distract myself as much as possible and ending up doing almost nothing of the things I really wanted to do. That kind of apathetic behaviour has been a part of me for a long time, probably since I began my search for answers regarding my intersex condition and kept hitting more and more barriers at all places where they should have been able to help me. Maybe it was just this sense of utter pointlessness which had pervaded me so profusely, with my recent accident and the realization that I could have become crippled or have died shaking up that state.

I have started doing more and more of the things I really want to do, even if I'm still stuck working down this backlog of work from the past years, including this technical book for Packt Publishing which I started on last year and am now rushing to finish up due to the frequent delays from my side. In that regard I have become more like myself. More like the person I think I am, or at least want to be. I think I'll feel even better there once I get this backlog of work cleared up, maybe even safe.

Where things are definitely not feeling safe to me include things like the current apartment I rent. With every sound startling me, the fact that I can hear everything that happens at the upstairs apartment - and with every heating and other warm water pipe in the walls frequently making their sharp, ticking noises - I try to find some calmness in the rare moments that it's virtually quiet. Yet a state of guarded calm is about as far as I get, which is probably one of the reasons why I don't sleep very well and never feel relaxed while at home. I don't go home to relax, but to have a place to eat, sleep and use my laptop, while suffering through the moments when I'd rather flee from the place.

There's also that so many things in this apartment are still broken or dysfunctional. With brown, rusty water from the warm water system in the bathroom, the rolling shutters installations having so many gaps that each room is practically open to the outside, the often almost frightening ticking and other sounds from the heating system and the ability to hear every drop when the upstairs neighbours use the toilet, I had to recently convince the land lady once more that I'm not paying full rent until everything has been fixed to some state of satisfaction. Welcome home, I guess.

The other thing is with these medical complications I mentioned. Since the beginning of this year I have begun to notice an increasing amount of distension and of feeling bloated in my abdomen. With the occurrence of this seemingly linked to my monthly cycle, and with no apparent changes in my gastrointestinal functions (no diarrhea, weight loss, or unusual stool, etc.), a quick differential diagnosis amongst common causes for bloat and distension pretty much only leaves the bloating often experienced during the menstruation cycle. As I also experience severe pain and the sensation of mild to severe inflammation in the vaginal area around the time of the distension, there is a definite correlation.

At this point I'm still tracking the symptoms in order to create a useful summary of the progression of said symptoms to take to my gynaecologist, which will likely be next month. To be honest, for me there is the struggle between the fear of these complications leaving me possibly crippled or dead, and the sheer terror I feel at trying to obtain help from a physician of any type.

While other things also make me feel bad, like attention from males, the sight of heterosexual couples, the flaunting of sexuality and the general discussion of intersex, transgender and homosexuality, there's nothing which terrifies and disgusts me as much as physicians and psychologists, I guess. While I do not wish to feel hatred, it's hard to not feel at the very least bitter disappointment at the mere thought of such people.

So while my PTSD appears to be showing some cracks at this point, there's still a long way to go before I can experience a day which isn't filled with pain, fear and terror. Maybe with another decade or two things will possibly have sorted themselves out. If I make it that far, of course.


Friday, 20 March 2015

The melancholy of survival

It's now just over a week since I got hit by a car while riding home from work on my bicycle. Despite having every opportunity to grievously injure myself, or even be killed, I got off with just severe bruising and - as I learned from my doctor today - a haematoma in my right shoulder. Walking is also still a bit iffy, with my right leg still not supporting my full weight for extended periods of time. Yet I survived, seemingly without any permanent injuries.

It's all just a little bit tiresome.

You know, there's just something about having survived so many things. I have crashed with bicycles over the years in so many interesting ways, and survived everything virtually unscathed. I have been psychologically and physically tortured by the medical establishment in the Netherlands and elsewhere, yet managed to survive that and flee the country to a better existence. After multiple decades of all this it just leaves me wondering what the heck the point of it all was.

Getting hit by that car last week to me was more of an annoyance than a real shock. More of a bother because it'd just set me back and force me to demonstrate my super-awesome survival skills of toughness. After so many times and so many years it's really lost its shine, at least in my own eyes.

There's the resignation and bitterness that it's pointless anyway, because I won't get any further than this state of confusion about myself and my body, with no medical help to ever clear anything up. This year I'm apparently facing the first real major medical complications of my intersex condition as it's wreaking havoc with my abdomen, causing increasing pain, swelling and pinched nerves. Cue another survival story involving getting a physician to take me seriously enough to examine me. Likely it'll just be another repeat of the past ten years of finding similar help, but that's what survival looks like: you keep surviving until there's nothing left to survive any more.

After last week's accident I have found myself in this weirdly melancholic mood. Part of it is reminiscent of the period after my suicide attempt four years ago and coming to terms with the fact that I had failed at it, but survived instead. It was a similar feeling of pointlessness. True, I was still alive, but what kind of life did I have at that point? I was still stuck at the same point with no chance to improve anything. Compared with the incredibly peaceful feeling I experienced during my suicide attempt, every waking moment after surviving it felt like part of a living nightmare.

Survival in itself is pointless. It's just another confirmation that you didn't die and that you still exist. If you cannot move on from that point and thrive, what's the point of surviving?

These coming weeks I should have more or less reassembled my life the way it was before my accident and it'll soon fade in relevance. I'll just be left with the same agonized thoughts regarding my inability to move on from where I have come in life, because others do not want me to move further. I can survive such oppression and struggle through life until I'll die, but what will it change?

Surviving truly is such an inconvenient bore.


Saturday, 14 March 2015

Getting hit by a car, or: my life in a nutshell

I'm incredibly lucky. Or incredibly unlucky, depending on how you look at it. It's the second year in a row that I have found myself suffering a bicycle related accident, yet also the second time that I get out of it without any permanent injuries. This time around it was definitely among my scariest accidents. Worse than when I took a tumble over the asphalt with 50 kilometers per hour, or that time last year when my front wheel got stuck in the tram tracks and I smacked straight into a barrier.

I was on my way home from work on Wednesday when I came to this crossing near a shopping mall. Along this stretch of road I was on all connecting roads had to yield, so I could zip along on my bicycle without too many worries. At this one crossing I noticed a few cars coming from my right and kept an eye on them to see whether they'd slow down and stop as they should. I'm not sure whether my attention had slipped or something, because the next thing I remember is seeing the bonnet of this grey car looming up to the right of me. My only thought at this point was 'it's going to hit me'.

I guess I did indeed get hit, for the next thing I remember is lying on the ground, in a considerable amount of pain. People were gathering around me, telling me to stay quiet. Someone cut away the backpack from my back. Then an ambulance arrived. An EMT at the scene had actually witnessed the event, watching me getting hit and immediately rushing in to help me. At that point I had no idea what had happened exactly or how bad the damage was. As I was lying on a stretcher on the ground, police officers arrived on the scene and began to ask me questions. After I got moved into the ambulance by the EMTs the questions continued, with prodding and poking added as well.

Nothing really hurt too much at that point, and I was able to comprehend and answer coherently to any questions, even if my German was a bit hard to understand for some of them. One of the people in the ambulance turned out to be Belgian and for a moment it was considered to have him talk to me in Dutch/Flamish. I felt relatively calm through all of this. Most of my worrying was about my bicycle which I was told had been damaged severely, along with my backpack which was destroyed, and how to replace it all. I also felt pretty terrible about how just when my life was on the upturn something like this had to happen.

The ambulance arrived at a to me familiar hospital, as it was the same one where I had been a little under a year before as well. I spent a total of three hours at it this time. During this time I got a full CT scan, with contrast dye, plus another check-up. As it turned out I had not broken anything, nor was anything visibly fractured. They did however want to keep me at the hospital for another twenty-four hours for observation, due to me having impacted my head during the accident as well. I felt that I could resign myself to this until I got told a while later that they had no free rooms, so that I'd have to camp out somewhere on the floor.

Faced with spending the next twenty-four hours confined to a mattress or bed parked possibly in some hallway or random room, I picked the second option after some pondering, which was to sign a form to accept the responsibility for going in against the physician's judgement and leaving the hospital. My reasoning was that I'd have a far better night and day at my own place than at the hospital and based upon my knowledge of a previous concussion I was fairly confident that it'd be all right.

While at the hospital I was also visited by a police officer and an EMT. The former informed me about the proceedings of the investigation. He told me that they had already determined that the fault was with the driver of the car which had hit me, as it clearly had to have yielded at the crossing. I also had had my light enabled on my bicycle. The driver of the car fortunately had cooperated fully with the police, having all insurance details readily available. I should be able to get any damage covered that way. The officer also explained about the punitive (criminal) side of the investigation, for which he'd be calling me in a week's time or longer again, in case I want to press charges.

Both with the insurance side and charges I'm not really sure how it all works, but I think I'll have to figure it out, hopefully with some help. I do know that I'll be more than happy to just get all the damage covered. I'm not really the type to go asking for blood, or money. Especially not after this EMT which accompanied the officer told me that the driver of the car had sent her best wishes for a speedy recovery. I can quite imagine that she was pretty shaken by the accident as well. I doubt many people willingly take the decision to go crash into a cyclist.

Standing outside again, a short while after signing the form, I decided to first make my way to the hackerspace. I could use some regular company at that point, instead of heading straight home to an empty apartment. I walked this whole stretch, with just a slight limp because of my injured right knee and carrying my crippled backpack with my right hand as my left wrist would not support any weight. At the hackerspace I spent about an hour, also checking for any damage to my work laptop. It was fine, except for some cosmetic damage to the aluminium shell, with gouges running along one side of it. At the hackerspace one person ultimately noticed my injuries and we ended up chatting about it.

Taking the tram home from the hackerspace, I walked the last bit from the tram stop to my place. There, in front of the apartment building was my bicycle, parked just as the police had told me earlier at the hospital. The front wheel was all twisted and unusable. As I pulled it free, the back wheel turned out to not move at all either, with the gears making clacking noises. Dragging the bicycle to my garage, I put it inside and locked the garage, even though I wouldn't know why anyone would want to steal it in that state. Once inside the building's hallway I found the bicycle's key in my mailbox, also as agreed. Once inside my apartment I was ready to crash, which I did soon after. Getting changed for bed was a painful experience, however.

Waking up the next morning everything plain and simply hurt in ways I cannot even begin to describe. Every motion hurt. Every shift in balance hurt. Only with the help of painkillers was I able to get through the day, working from home, as the project I'm on was simply too important at that point to call in sick. The same story the next day. Around this time it was becoming clear that I definitely had a bit of a concussion, with the tiredness, mild confusion and other symptoms I remembered so well from the first time I suffered one.

Today is Saturday. I have put in a full working day again, because it's crunch time in the project and I wouldn't know what else to do with my time. Aside from finishing this book project for which I'm supposed to finish the last draft chapters this month. I really have no time to be sick, I guess. Tomorrow I have to buckle down again and try to finish some work. Then next week I have to get my bicycle to a repair shop. Somehow.

Those who have followed me on Twitter the past days have seen the images of the damage to my right hand and face, the bruising on my shoulder and other garish injuries. Most of the things which really hurt are internally, however. Particularly my muscles and joints seem to have taken a beating and are keen to remind me of this fact. That said, it could have all been so much worse. I could be stuck with broken bones right now. Or be paralysed. Or dead.

In that regard I'm really lucky, but just like with life in general, it's all relative.


Saturday, 7 March 2015

In the end it's all about control, or the lack thereof

If there's one thing which has frustrated me over the past decade and then some, it's always been and still is the matter of explaining just why it matters so darn much to me why I need to know those things about my body, and need surgeries and what not. Why can't I just be grateful that I have a healthy body and move on, rebuild my life from there? What is keeping me stuck and obsessed with the past? Every time I try to explain why these are inane questions by people without any real understanding of the issue I'm dealing with, it just falls on deaf ears.

The only people I have encountered who truly understand what it is that I'm trying to say are those who themselves share similar experiences: either through medical trials or something similar which came to threaten their own body or that of someone dear to them. It's only through such experiences that one can come to understand what it means to lose control and through it lose one's body.

To the average person their body is just something they carry around, do stuff with, some things which are healthier, some less healthy. In the end it's always their body and their choice, however. Yet to someone who suddenly becomes very sick, or suffers a major accident there is this transition from the first situation to an entirely new one in which they do not control their body and do not make the decisions. Suddenly it's the doctors around them, family members, friends and loved ones who assume this control. For people who become incapacitated like this for a long time, this experience can be beyond frustrating. It's why people become angry at and try bargaining with physicians.

In all of this it's one thing if it's your own body that's resisting recovery, such as in the case of revalidation, because that's something you can conquer with sheer strength of will. It's something else entirely if that control is ripped away from you and you have to rely on some doctor to help you. Maybe it's something undefined and undiagnosed, yet serious enough that you'd want to have some examinations performed, yet you cannot find a physician willing to perform such examinations. Maybe you're waiting on a surgery date, months into the future. Both leave one helpless. Worse, both steal one's body away for the time being.

In my experience I don't have a body. Worse, I haven't had one for the longest time, if I ever had one. First there was the Lie. About me being a boy, then a man. Only to figure out much too late and after many harrowing years that I am not male, that my body never was that of a male. Even the horrible duality during puberty didn't clue me in, as neither I nor my parents knew about intersex. Those were twenty-one years during which I didn't exist. I didn't have a body there. Not a real one, but an imagined one. I had no control over anything there as there was nothing to control.

Yet even after discovering what was really going on on - now over 10 years ago - and figuring that now I could regain my body and find myself again, control was wrested away from me once more. Nearly a decade of Dutch and other physicians and psychologists denying me help, assistance, examinations or anything else remotely useful, while forcing their delusional lies upon me. More lies, again. At no point could I even begin to regain control over myself, my life or regain my body.

How could I, really? In the first place I didn't - and still don't - really know what this body is, so there's nothing to regain, or accept for that matter. All control there lies with physicians. Both emotionally and rationally I cannot even begin to solve this most fundamental of issues. In the second place there's all the traumas. Not just the physical and emotional abuse from physicians and psychologists, but also from others who saw fit to make use of me in my confused state.

I can really notice this control issue in daily life. Now that things are going well at work, I find that I enjoy going there, putting in a good day's work and feeling good at my progress there. At work I'm in control. Then, once I'm home again, I feel the lethargy and despair sink into my very soul once more as I feel so overwhelmingly clear that I'm not in control of my life there. I can pretend to be just another woman at work, but I cannot do so towards myself. There's no deceiving myself. I am generally not bothered by my traumas at work now, yet at home it's what I spend most of the time fighting against. At work I feel like I can be myself, even if it's through shutting out reality for just a few hours. At home I have to face the gritty truth about my future.

I am something. I'm a puppet. I'm controlled by physicians, psychologists and regular people. The strings attached to my joints are called hope and despair, and they allow anyone who desires so to make me dance. It's why I have come to hate both hope and despair so utterly and completely, for both represent all that's wrong with my existence. Until I can cut these strings I won't be free, and won't be in control of myself. It doesn't matter where I go or how far I travel, for these strings are infinite.

And this is why I need to have these answers about my body. It's why I need this reconstructive surgery. It's why I need to close this medical chapter. It's to regain control, regain my body. Cut the strings, so that I can finally be a real human being.

My only request to those who still wish to batter me with reassurances or 'helpful' advice is: don't. If reading this post didn't clue you in, I'm not sure what will. This isn't about health, or intersex, or anything as simple as that. This is about freedom and the ability to decide about oneself, which is to say an attempt to regain all of that, in so far as I have had any of it during the past decades of my existence.

Don't make me dance. Just cut the strings.