Cue cute guinea pig noises

Yesterday I partook in something rather interesting, namely a study by UK university law researchers on laws pertaining to intersex. One of the reasons being the complete absence of any such laws in the UK, while countries like Australia and Germany have already passed laws specifically pertaining to intersex individuals. With similar and/or different laws in the works, a study consulting actual, real-life intersex individuals would be very useful.

Personally I thought that it was great that I got consulted this way. Both because it makes me feel appreciated, but more importantly because I could possibly make an actual difference for intersex individuals. Indeed, since people like me have seen and experienced all that is wrong with society's approach to intersex, why not ask us how things should be changed?

Ultimately my recommendations came down to a complete ban on the genital mutilation of intersex children, the full right by said children to decide about their own biological sex, gender and related, and to add information about intersex to the school curriculum, starting in primary school.

I also noted during the interview that there is an almost complete disconnect between politics and the medical world when it comes to intersex, meaning that while politics can say one thing, organisations like WPATH can happily go on to refer to intersex as a disorder and recommend forced 'normalisation surgery', involving said genital mutilation. It is something which makes the outright by politicians against for example female genital mutilation in non-Western countries seem delusional, if not hypocritical.

What results of this study is hard to say at this point, but it does make me painfully aware of the long way we intersex people still have to go before we are essentially recognised as 'persons' for the law and are both safe from harm and gain the right to necessary medical treatment, at our own discretion. Newborn intersex babies, infants and children in particular.


What was also interesting in light of this study is my own current situation. Yesterday I went home feeling unwell again, with also the disconcerting symptom of my right leg having gone virtually completely numb. Today I stayed home after calling in sick, with still the same numb leg and partially numb right arm, as well as a migraine and occasional bouts of nausea.

What worries me the most about the numbness in my right side is that previously I would have it for a few days and it'd go again, but this month it first appeared as a symptom for a few days, vanished and then suddenly reappeared very strongly yesterday. This has never happened before.

Somewhat bitter in this is that last week I notified my family doctor and the endocrinologist about the numbness and other symptoms already, and I was expecting a response last Friday or Monday with their recommendations, yet no reply has been received by me just yet. It seems that I'll have to send another update and beg them to please consider my case to be increasingly more urgent.

I would really like to feel like I can trust doctors again, but when I am being told one thing and nothing happens, or I'm constantly being dismissed, it reinforces the belief that doctors are not ever to be trusted and that I am justified in my fully negative opinion of them. This is not a pleasant belief and not one I wish to maintain, if at all possible.

Meanwhile I have decided that if these extreme PMS and other symptoms are caused by endometriosis, the best thing I can do at this point is to use the anti-conception pill again, which should suppress any hormonal cycle and thus prevent the related symptoms. If this works as imagined, then it'll be virtually certain that I do indeed suffer from endometriosis, which will be both a blessing and a curse. The former because it'll mean one less battle to fight with doctors about regarding my monthly pains.


That I am still - after eleven years of doctor contact - experimenting like this with my own body and life does really bring home the point that in the end I am merely a medical guinea pig, not a human being.


Maya

On health issues, depression and daily life

It's surprisingly hard to keep up a professional façade when you notice that most of the sensation in your right leg slowly drains away during the day at the office. Near the end of the day you're just lugging along something more closely resembling a wooden leg, except for the stabbing pains in the hip.

For me this is an almost monthly event, often occurring after my body decides it's time to start menstruating. This first starts what feels like major inflammation in the vaginal area as the fluids cannot exit the body. I noticed this a couple of days ago when I was lying crying on my bed for a while as the pain was just so bad.

This nerve irritation, swelling or whatever it is then seems to work its way mostly into the right side of my body, with my right leg going numb during a couple of days. When I touch the leg's skin I can feel part of the normal sensation, but numb and accompanied by a tingling sensation. The pain sensation is nearly fully gone during those times when the leg is very numb.

All of these issues are monthly since over twenty years ago, increasing gradually in intensity over those years until reaching a crescendo this year. I could be overdosing on oestrogen right now thanks to my Hormone Replacement Therapy not taking into account an increase in oestrogen produced by my body, as the linea nigra - the vertical line on my lower abdomen - seems to suggest.

Next month I'm seeing a gynaecologist. In December I'm seeing an endocrinologist about it. I should feel hopeless, I guess, but after more than a decade of seeing specialist after specialist it's hard to feel anything but bitterness. Bitterness at being abandoned, at being rejected, cast away like some kind of failure, put away like a crazy person.

Every time some doctor or similar opens their ignorant faces and denies that I am intersex, but have to be transsexual, they are denying these struggles I have and still am going through on a monthly basis. They're denying my hormonal issues. They're denying the medical findings so far, including my absurd hormone levels as a teenager and undeveloped testicles. They're denying that I am the person who I know I am.

Suffice it to say that I'm not feeling very happy at this point. Chronically depressed with bouts of suicidal depression is more like it. Going through a day feeling like life might possibly be kinda okay is for me an exception achievement. Feeling like life is a goddarn chore and that I cannot wait to cast off this stupid, retarded body I was born into is far more common.

But really, why would I be happy after struggling with this body which between intersex, migraines, monthly pains and just being damn ugly has caused me enough grief already, and now seems to be gradually failing on me. Last weekend I spent mostly in bed, feeling like dying from the pain in my abdomen, as well as from the two-day migraine.

I'm not happy. I refuse to be happy, because it would be a lie. My life is a complete tragicomedy, with me as its unwilling victim. Knowing this doesn't give me any kind of pleasant, or raise in me the expectation that people will rush to my aid or that suddenly I will receive the medical care a hermaphrodite like yours truly absolutely must receive over their lifespan.

I have no expectations of life. There's just what I can do myself. Decades of brutal lessons have taught me that I can only trust myself. And I hate that feeling. I want to believe in happiness, in life, in others, in help, in sunshine and carefree days. Yet I cannot.

Struggling through daily life and observing others having dull, boring, uninteresting lives I feel pained. It's not jealousy, or something as basic as that. It's more like observing an alien species I have read about in books, but which is otherwise wholly unknown to me. Even if I know that I'm supposedly part of said species, there might as well be a meter-thick armoured glass between us.

There's just hate, bitterness, isolation and the enormity of living out my life in a hostile world where everything I do is wrong. Where me existing is wrong. Where me trying to participate in daily life has horrible consequences, whether external or internally via my post-traumatic stress disorder twisting my perception of the world around me into the perfect nightmare scenario.

Even if I do receive medical help this and next year, I do think it's better for me to just be alone, by myself. Maybe some day I will be able to trust people again. Maybe not. But I will not force myself.

And if I do not receive medical help again the coming months? I do not want to think about it. How much pain is too much? How far can one's psyche be pushed until it irreparably shatters along with one's motivations to keep breathing and living?

I just want to stop feeling pain. The pain of my body. The pain of my mind. The pain of my soul and psyche. The pain of nightmares haunting me in my restless sleep. Just make it stop... even if nobody helps me and I am left alone, by myself again, with just the one thing I can do.

I don't think I was ever ready for a life like this...


Maya

On respect and being too alien

Ever since fleeing the Netherlands and becoming somewhat settled in my new country I have noticed that as the immediacy of survival subsided, I began to experience the return of memories of events which I had seemingly completely forgotten about. Much of it for apparently good reasons, as recollections from my childhood and early puberty indicate.

I had remembered that during my primary school time I was bullied, with groups of students standing around me during lunch breaks outside, harassing and ridiculing me, or trying to prevent me from cycling home. Events which seem to have slipped my mind included at least one time when a fellow student spit into my face, and another where some classmates were holding me while another punched me into my abdomen until I folded over in pain.

What was it that drove these classmates to be so incredibly cruel to me? I do not recall them doing something similar to others, whether in my year or to others in other classes. It's often said that appearing weak, easy to give in to demands, or just being 'weird' tends to attract bullies. Yet the scale at which this happened was astounding. It wasn't a single bully, but practically my entire class who participated. Enough to surround me multiple bodies thick during lunch breaks and enough to block an entire road and sidewalk.

This wasn't just limited to primary school either. During my subsequent first few years in high school the same pattern continued, with many of my classmates taking up the habit of surrounding me every time we were waiting for a new class to start and killing the time by verbally harassing me. It was during that time that I discovered that I'm susceptible to migraine attacks induced by stress. Almost every week for at least one year I'd be absent from part of that day's classes as I was forced to go home with another migraine, often being picked up by my mother as I was unable to cycle any more.

In both cases I managed to improve my situation considerably through violence. In both cases those instigating the worst bullying and harassment were guys, and in both cases I had to first use violence in order to make them stop. For some bizarre reason they then turned friendly towards me, as if the whole thing had just been some kind of outrageous test.

It all still makes me wonder what it is that seems to make people in general consider me to be different enough to single me out, not to mention wonder about the behaviour of people around me as a whole. There are plenty of things which likely play a role, including me living the first decades of my life as a bizarre kind of inverse transsexual: believing myself to be a guy while in reality I always was a girl in body and mind. For the most part at least.

And then there's the second curse, that of being gifted. Not thinking or seeing things the way those around you of your age do, but preferring to converse with adults even as a child. Reading books for adults because children's books are boring and simplistic. It's another great way to find oneself to be very lonely, as no group recognizes itself in your combination of physical and mental age, even as your own mind keeps striving to outpace even the most learned adults around you.

All of these memories seem to blend together with my struggles of the past decade and some, with the bullying, harassment and condescension of physicians, psychologists and other supposedly learned and intelligent people. Their belligerent attitudes are to me little different from those of the bullies and their hangers-on who used to torment me as a child and teenager.

It all serves to reinforce for me that both physically and mentally I'm too different, too alien for most to ever accept or understand me. I'm surrounded every day by people for whom I might as well be an alien from outer space, as I'm nothing like them and they cannot comprehend what it's like to be so different.

This is not to say that there aren't individuals here on this planet who do respect me, but they are far and few between. Most people avoid me because I'm too strange. Those who should help me because of their occupation meet me with scorn and derision, rejoicing in making me out to be a complete and utter liar. This sadly often leads me to be suspicious of people acting friendly towards me. I have never enjoyed playing the victim, which is why I have always kept up a brave and happy face through all of these decades of physical, mental and psychological abuse, harassment and worse, yet I'll be damned if I am not allowed to feel at least a little bit that I have deserved something of a break at this point.

A good night's sleep without being plagued by barely remembered nightmares and traumatic recollections would be a start.


Maya

Welcome to migraine central

Waking up this morning had me feeling weak like a newborn kitten, with my lower abdomen pulsating and cramping with exquisite pain. That was before the headache started, a headache which would soon develop into a mild migraine. After calling in sick at work, I then entertained myself the rest of the day with forcing myself to eat something so that I could take painkillers, and distract myself sufficiently with reading a book in a room with dimmed light (light-sensitive migraines are so much fun) so that I could sleep. As I'm typing this I had another three-hour nap earlier. Total caloric intake today consists out of some bread, a pizza and a few bits of chocolate. Also lots of water and paracetamol tablets. Yum.

When I say 'mild migraine', I'm putting it next to what I consider to be a full-blown migraine, such as those I suffered a lot going through puberty. Those had the full package deal, with the white-greyish specks in one's peripheral vision which keep multiplying over the next half hour or so into a proper aura, to then vanish and be replaced by the hammering of a rusty, blunt icepick in the part of one's brain just behind the eyes until it felt like your skull is falling apart into small fragments. At that point everything hurts: from light to touch to temperature to the mere awareness of being alive. In that regard merely feeling like something is trying to claw its way out of your skull via your eyes is pretty darn mild.

For me migraines appear to be mostly stress-induced, though thanks to the incompetence of Dutch physicians who overdosed me on hormones on occasion, I also discovered how easily getting too much oestrogen into one's system can trigger full migraines, as well as motion sickness and everything. During my High School period I didn't have a fun time, between getting bullied by virtually everyone for being 'weird' and trying to somehow squeeze my cursed-with-giftedness self into the unyielding shape of the education system. I'd often get the tell-tale signs of an impending migraine attack as I was standing there, surrounded by classmates between classes while they were making insensitive comments and being all suggestive. I remember reporting to the principal's office frequently to get permission to go home, whether by bicycle or by having my mother pick me up with the car.

I thank the heavens that I haven't had one of those aura-based migraine attacks in a while, with the last one being about two years ago. More recently, as in the last two weekends and today at least I have had these mild migraine attacks, however. Today's attack seemed to be related to the increased abdominal pain, as well as a sudden spike in stress at work. The attacks of the last weekends are probably similar, though those two also had some more neurological implications, including blurry vision with the right side being most affected.

The past weeks I have been noticing a lot of cognitive issues, with me suddenly having trouble remembering words, typing, and stumbling over words I have pronounced many times before without issues. Also general issues with motor functions, with both fine and general motor functions negatively affected. This all seems typical of an excess of stress, which is something I have plenty of, thanks to my current medical problems and their pains, apprehension about upcoming doctor appointments, working 10-hour days at work, and the book I'm still writing with my editor getting very antsy because it's taking so long.

Stress-reduction seems to be the obvious solution here. Unfortunately there doesn't appear to be any conceivable way to make that happen within the next month or two. Seems like I'll be enjoying a few more mild or even full migraines the coming time. Can't bloody wait.


Maya