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

Deaden one's heart in order to survive

Over the past decades I have learned the valuable lesson that one should most definitely at no point trust another human being beyond oneself. And that even putting trust in oneself can be a very poor idea. One can disappoint oneself, though at least there one has recourse to prevent or deal with such things, as one can learn to detect the subtle ways of betrayal of one's own mind. Not so with other humans.

It's been said many times before that the only person you can truly know is oneself. Share hopes and dreams, or put faith in others and you will get hurt. Being alone hurts, too, but it is a manageable pain next to the agony which others can and will inflict upon you. Suffer alone and at least you know that you can always rely on yourself.

Whether any of the above is actually true is something I do not know with absolute certainty, though there is a part of my mind which insists that it is the absolute, undeniable truth. This while another part of my mind aches for human companionship, maybe even more, but never manages to find solid footing as the former part of my mind keeps getting proven right over and over again. Completely distrusting others isn't paranoia if it's based on many years of bitter experiences.

It is much the same with doctors, psychologists and similar. Why would I trust a doctor after everything they have put me through? What conceivable reason could I have to ever believe again that doctors are there to help people instead of just to torment and murder them? How could I?

As appointments with multiple gynaecologists and a psychologist loom up in front of me I am confronted in a most agonizing way with this struggle between hope and fatalism. Most of my mind insists that each and every one of these people I'll be meeting will hurt me significantly, adding to the trauma and possibly break me completely this time. A small part of my mind still holds the hope that this time will be different. That all of my questions will be answered and all medical problems resolved.

No matter how fatalistic I feel about physicians, however, I cannot deny the simple truth that without interference I may already find myself in a terrible situation within the next months if not weeks as the painful symptoms related to my intersex condition have worsened to the point where I cannot help but wonder whether this is how it feels to be dying. With my lower abdomen just a mass of numb, burning, cramping pain and my right leg having gone almost completely numb twice just the last week already, not to mention the frequent bouts of migraine over the past weeks, I can only fondly remember last year when the pain was relatively mild and limited to just one week but otherwise quite insignificant.

The thought of actually dying frightens me enough to mercilessly kill off any emotions and feelings I may have in my mind and heart. Nothing matters at this point beyond simple survival. That means getting to these doctors as soon as conceivably possible in the hope that they'll find out what's wrong and interfere before anything can turn fatal, my feelings about doctors be damned. If these doctors screw up again... at least it won't be my fault, and I can die in the bitter confirmation that one truly cannot rely on others.

If it does turn out fine...


Maya

Be wary of us sexual abuse victims

Over the past decade I have suffered raped and sexual abuse in various forms by both men and women, by regular people and so-called healthcare personnel including doctors. I have lost myself repeatedly because of previous abuse and allowed others to take advantage of me in ways which still fill me with horror and loathing at the mere recollection. There is also circumstantial evidence that I - just like a cousin of mine - was sexually abused as a young child, though the facts about this are lost in the fogs of time.

All of this has served to make me into the person I am today: someone who despises and loathes sexuality more than anything. Unable to fit something so completely evil and negative into my life, I take great care to avoid it as the mere mentioning of an aspect of it can trigger crippling recollections of events, feelings and traumas which will cause me incredible emotional pain.

Sometimes I dare to utter in public that I'd appreciate it if people were a bit more careful with spilling details about their relationships, sex life and pornography preferences, just in case someone like us is nearby: someone who is still struggling through the consequences of such horrific trauma.

I'm a horrible person for having the nerve to deny others unfettered access to details about anyone's sex life and preferences. I'm playing the victim as I would like others to consider people like us before mentioning something which may potentially trigger a traumatic memory. I'm being a big baby as I try to deny something that's intrinsically part of being human. Others are completely justified in telling me to crawl off somewhere deep and dark where their lascivious behaviour cannot reach me.

People like us do not deserve any compassion, sympathy or understanding. All the suffering we underwent was simply because we were born sinful and undeserving of humane treatment. Every tortured memory and traumatic recollection at a particular sight, touch or smell is just to remind us that we are sinful creatures, only born to lead others astray.

At times like these I simply do not understand anything any more.


Maya

Intersex death row, or: why I'm desperate for answers

One's mortality is something we're all aware of to some extent, but there's nothing like having the prospect of one's imminent death looming in one's future to really motivate one to analyse one's feelings on the subject.

I do not wish to die. I wish to just fix all that's wrong right now and move on with living, never thinking about taking my own life as a way to stop the torturous pain. The question which I get asked a lot is why I don't do just that: accept my body, accept what has happened to me and move on.

Today I'm yet again virtually crippled, with a constant burning pain in my lower right abdomen, a distended abdomen, sharp pains in the groin region, painful hips, a slightly numb right leg and a sensation of severe inflammation in the vaginal region. Add to this feeling of exhaustion, the headaches and a near-complete lack of appetite combined with bouts of nausea, and the question I'd like to counter the original question with is 'how else am I going to know what causes these symptoms, or how to treat them?'.

These symptoms aren't getting better, either. Some of them have been causing me grief on and off over the past decades, with the abdominal pain first striking when I was eleven years old. The sensation of vaginal inflammation started a few years ago and became severely lessened after I began to take the pill, yet for the past months it's back with a vengeance again. With the information I have on the many possible complications - ranging from cancers to sepsis - for an intersex condition like mine, it feels like I was placed on death row many years ago and am just working through the usual appeals in the faint hope that maybe this time the judge will admit my innocence.

As my body is beginning to throw up more and more warning flags in the form of pains and other symptoms, it also raises for me the eerie possibility that it'll be shutting down any moment now. It may have been fighting against infections, tissue intrusions and what not for these past decades, but is now ready to throw in the towel. I cannot say. Not with an absolute refusal by doctors to seriously consider my case.

I can only hope that this new gynaecologist won't be like the others. For the only other thing I can seemingly do is pray that I won't die this year or soon after.

Please don't let me die...


Maya

To admit defeat

Last night I had to watch on helplessly as the life slowly left the body of my young daughter. Unable to stem the flow of blood from the gash in her neck from the car's safety belt, I had known that she was lost to me the moment I pulled her out of the car's wreck. Yet no parent would admit defeat then and there. I tried to make her as comfortable as possible and whispered comforting things to her as she complained about not feeling so well. Yet despite these comforting lies, I felt the life fade from her frail body with every breath and every cough as I held her during these last moments. Holding such a small body in your arms and knowing that the person inside it will never grow up to be an adult is simply impossible to comprehend.

Fortunately all of that was just a dream. Another pleasant nightmare courtesy of my mind. Despite none of it being real and me never having had a daughter, it was real enough that I still feel the pain inside my heart as I remember her face and can still feel the small, warm body cradled inside my embrace. Also the feeling of the utter helplessness of the situation, of being stranded far from help, with one's own child dying there in the cold yet completely unable to do anything about it.

It is in many ways comforting that I have only myself to take care of, yet the feeling of helplessness I feel towards my own situation and regarding helping myself is no less distressing. A while ago I mentioned that I was going to make a last effort to find the help for my intersex condition and with it find a solution to the medical uncertainty and psychological madness which has been torturing me for well over ten years now. With it I also hoped to find a solution to or at least a way to deal with these monthly pains, with the question there being whether they're side-effects of my intersex condition, with possibly harmful or even fatal consequences.

So far my GP has been very helpful and forthcoming, finding a gynaecologist who specializes in the topic of intersex, among other help. Only glitch was that I had to call this gynaecologist myself yesterday, in order to make an appointment.

I really thought I could do this. I had gone through the usual lists of fears, possible issues, motivational speeches and which things to say during the conversation until around half-way through the afternoon I decided to go for it. Yet the moment I held my phone and realized the full scope of what I was about to do - again face the same hopes, fears and possible crushing pain if it didn't work out like every other attempt - I just felt overwhelmed by this sensation of sheer terror.

Thoroughly shaken, I put the phone back again and wrote an email back to my GP, asking whether she could please make an appointment for me, regardless of the date or time, as I simply wasn't capable of doing so, psychologically. After doing so, I resumed working until the end of my usual working day, yet feeling the incredible numbness of dissociation as a result of crashing head-first into traumatic recollections like that. I also felt like an utter failure because I couldn't even handle a simple phone call like that any more, apparently.

Upon leaving the office I ended up chatting with one of my female colleagues, one with whom I have talked before. As it turned out, she had in fact found my website after our last talk, so I felt free at that point to talk about my failed phone call attempt earlier that day and my struggles in general. I must say that it felt really good to talk about it with someone else. Someone who isn't a doctor or psychologist. Someone who just listens really well and asks the right questions. I will admit to shedding about the maximum amount of tears as is allowed in a public place during this conversation.

One thing which it also reinforced for me is just how incredibly alone I am. Not just because of my giftedness, but also because of the struggles around my intersex condition. It's easy enough to deal with being smart by just finding the right people to hang out with, yet if you don't know what in the flying hell your own body is even about and you only get conflicting reports from doctors despite mounting medical issues, that's when you tend to really withdraw and avoid people in general.

If my GP is kind enough to make an appointment for me with this gynaecologist, what are the chances of it working out this time, with me getting the real facts and proper treatment/surgery? Based on my experiences over more than a decade I give it about a 5% chance. Maybe 10% if I'm optimistic. With how physicians in general treat intersex individuals almost as sub-human beings without a voice, I can only hope to find these rare physicians who aren't apparently born biased. Yet I still do not wish to hope, for doing so only hurts. Despair and bitterness are soothing and final.

Yet there is that one last, final, conceivable chance that this all could be resolved successfully and I'll just that which I am, the person who I actually am and with no physician, psychologist or the like ever able to declare me crazy, transgender, or worse, ever again. If there were to come true, my joy would know no bounds.

More than a decade of misery says it just won't work out. Yet to admit defeat is just too easy, isn't it? Just like committing suicide.

No wait, that last one is the most tempting yet also the hardest thing of all. I'd rather die than be intersex, yet I'd rather suffer through another failure of a physician than to try and take my own life again.

Please just let this waking nightmare be over with, soon...


Maya

Striking a balance between suicidal depression and cheerful optimism

You probably are thinking right now that you've read something like this before already, not too long ago. You would be right in this assessment, for little has changed to warrant a difference. You're still living two lives, so diametrically opposed to each other that they couldn't be more dissimilar.

One of these lives has you working on a successful career as a software engineer, with ambitions to move into electronics and related fields. The other has you crying at night, until your own hands attempt to choke the life out of you on their own accord, only to fail and have you cry yourself to sleep over your own failure as a human being.

It's clear which one of these lives is real and which one isn't. Obviously you are an engineer, with an inquisitive mind and an insatiable appetite for learning. The other 'you' is merely the fragmented remains of what happens when one's emotional side collides with an obstacle it cannot work around, such as society.

All it takes is a reminder that you have a freakish body so unlike that of those around you, and that doctors and psychologists have and still knowingly and willingly torture and deny help because of it. Your mind may be part of normal society, but your body is most definitely not. That's why every reminder of this, of your intersex condition - or should I say, disorder? - sends you spiralling back into that other 'you', where you claw at your cursed skin with your nails as you cry in agony while only wishing for sweet death to finally claim you.

One of these lives has a future, one doesn't. The one which has a future will die with the one which doesn't.

Now, how do we resolve this little conundrum? I'm waiting...


Maya

Remembering you

Waking up, I sleepily reach over to your pillow
Finding it empty, I only smile to myself.
Remembering the softness of your face
As you lie there sleeping.

Brushing away a few stray hairs from your face
Admiring every single curvature and feature.
The softness of your skin together with
Its warmth is mingling with my own.

Remembering our life together, every singular
Moment of happiness and shared understanding.
Never a harsh word spoken, or negative thought
Imagined or expressed.

Grateful that you do not truly exist, but are
But a figment of my imagination.
Not an illusion, for all of this is too real,
Just something more real than life could offer.

Never having to share any moments of pain or agony,
For the darkness is all mine to keep.
You're the light, that which will never be, yet
Always illuminating my heart.


Maya