On Thursday this week I had my 12th MRI scan. This one was a repetition of the 11th scan, in order to get a better look at a presumed site of inflammation in my spinal cord. For this contrast dye was required, which was a second time for me. After an hour-long wait in the waiting room of the clinic, I was allowed to go through the scanning routine.
Take of all clothing items, boots and the like which contain metal, change into a shift and walk to the MRI scanner. Lie down and get 'comfortable'. Get the needle for the contrast dye jammed into the large vein in my right arm. Nod as the use of the emergency signalling bulb thingy is explained. Get the sound-dampening headphones put on. Sensor-enhancing cage is placed around the head. Personnel leaves the room. One slides into the scanner and spends the next twenty or thirty minutes kind of dazing as the noisy MRI scanner does its thing.
With the contrast dye there's the warm sensation in one's abdomen and sometimes chest. Other than that it's all the same as every other time. Once the scan is done, one is slid out of the scanner, the sensor cage is removed from around one's head, and one is further extracted from the scanner bed. One walks back to the dressing cubicle, gets dressed again and waits in the waiting room until called by the radiologist.
The good news? With the enhanced resolution courtesy of the contrast dye there was no sign of any inflammation in my spinal cord. This means that next month I should get the all-clear from the neurologist. After three MRI scans, one lumbar puncture, a nerve conductivity and a visual stimulation test, any of the symptoms of pain and numbness which I'm experiencing are most likely not due to anything neurological.
This then shifts the weight of the medical investigation to my gynaecologist. During next week's appointment I hope to discuss the laparoscopy which he proposed, and hopefully plan it for this or next month. At this point the cause of my chronic pain and discomfort has to lie in my abdomen. The main question is what is happening.
That fluid is being produced every month seems certain. That I have a regular monthly cycle is clear to me, and the cycle monitoring using my blood hormone levels should provide further data on this. The questions then seem to revolve around what tissue is present in my abdomen that is responding to these varying hormone levels, where this fluid is being produced and where it goes to afterwards.
One of the possibilities the gynaecologist mentioned was a fistula (rectovaginal fistula [1] ), which basically means a hole formed between the vagina and rectum. This would allow fluids to pass from the vagina to the rectum, and vice versa. That there is regular damage occurring to the inside of the rectum since I was a teenager has been established at this point. This might be an underlying cause.
If what underlies the symptoms of pain and distension in my abdomen - as well as the numbness and pain in my arms and legs - is the formation of such a fistula, caused by the trauma from fluid gathering in the (closed-off) vagina, then this should be easy enough to spot with the laparoscopy. The solution then would be to create an exit for the fluids, meaning creating an exit for the vagina by attaching it to the perineum, creating a regular vagina, even with fanciful labia and everything.
That way the fistula could heal up, I would just have to mess around with tampons and such wonderful things, but I would be free of pain and numbness. Beyond what's deemed acceptable for a regular woman, naturally.
I just hope that this laparoscopy thing works out. That it gets good results and any required follow-up surgery will be readily available. That it'll hopefully be the end of over thirteen years of looking for answers and medical help. That after the surgeries all I have to deal with is healing up and start processing the pain and traumas of about two decades worth of experiences related to this body and society's response to it.
I'm looking forward to telling my medical coach that I won't need any more 'help' from those 'intersex specialists'. Yet the anger and frustration I feel towards intersex 'specialists' and intersex organisations is something that will take a lot of time and energy to process and give a place. The realisation that all of those were utterly useless and a complete waste of time, that all I needed to do was to wait for my body to start suffering symptoms so that I could go to proper doctors and specialists who actually do have a clue.
My body is no different from that of a regular woman. They too suffer development issues of the vagina, fistulas, fissures and so much more. I should never have needed 'special' doctors. That's the take-away message for me here. I'm sick of what ultimately comes down to discrimination.
What stresses me even more than all of the above is the realisation that in addition to all of that, I also have to somehow manage getting a new job, find a new home to move into, deal with the job office in the meantime, and wait to hear what the court will decide in the matter of the eviction case against me.
Honestly, I don't really have the energy to care about any of it at this point. The medical stuff and constant pain management is more than enough already. I regularly communicate with headhunters about potential new jobs, of course, but it is so hard to commit myself to anything when I don't even know how my health will hold up over the coming months, or what will come out of any surgeries.
What'll be the right choice to make? When will I be available for a new job? I don't know. At this point I cannot function any more without constant painkillers. The hoped-for surgery should resolve this, but at this point that's nothing but wishful thinking, more born out of desperation than out of cold reality.
Not to mention the possibility of surgical complications. I just cannot tell. Yet it's not easy to communicate this to others, even if it are those others who will decide over my life the coming months.
It feels so incredibly lonely and terrifying.
Maya
[1] https://en.wikipedia.org/wiki/Rectovaginal_fistula
Saturday, 10 February 2018
Saturday, 27 January 2018
Preparing for my next surgery
Earlier this week I had what might have been the most anticipated event for me this month. I didn't expect that much to happen at the neurologist, and other than having a redo of the last MRI scan of my spinal column (this time with contrast dye), it seems that this will be the end of that course of investigation. No, the biggest wild card, medically speaking, was my appointment with the gynaecologist.
It's been about two years since I last talked with this gynaecologist, and a lot of things have happened since that time. Things such as the big physiological changes my body underwent in those years - particularly my ovaries finally kicking into gear - along with my current set of complaints (distended abdomen, regular sensations of fluid gathering and things rupturing in the vaginal area. This probably helped to get things right down to business.
An ultrasound showed that at least I do not appear to have ovaries in the expected location for a plain old woman. To gather more data on my cycle I'll have blood taken for a couple of weeks in order to see how the hormone levels fluctuate during that time. Then, at the end, the gynaecologist suggested a more extensive procedure. Namely a laparoscopy of the abdomen.
This would involve the gynaecologist making small incisions in my abdomen, to allow for a camera and tools to enter the abdomen. The goal of this would be to explore the organs and tissues present and take biopsies of relevant tissues. Ideally this would allow the gynaecologist to see exactly what is going inside my abdomen, and settle the question of which organs I have/do not have once and for all.
The coming weeks it should become clear when this procedure will take place. I fervently hope that this will definitively answer the question of whether I have a vagina which is usable for re-attachment to the perineum, while also putting to rest any fears I have about cancer and other potential issues which might be underlying my current health issues.
The procedure itself would be easy. I'd be put under completely, so after an hour or so I'd be waking up again to learn of the results and be able to leave the hospital the same day. With some luck those results would allow me to finally find that reconstructive surgeon for the final surgery. Hard to get better pre-surgery information than the video and biopsy results from a laparoscopy.
Who knows, maybe this will be the year when this 13-year old medical drama that is my current life will finally come to a (happy) end?
Maya
It's been about two years since I last talked with this gynaecologist, and a lot of things have happened since that time. Things such as the big physiological changes my body underwent in those years - particularly my ovaries finally kicking into gear - along with my current set of complaints (distended abdomen, regular sensations of fluid gathering and things rupturing in the vaginal area. This probably helped to get things right down to business.
An ultrasound showed that at least I do not appear to have ovaries in the expected location for a plain old woman. To gather more data on my cycle I'll have blood taken for a couple of weeks in order to see how the hormone levels fluctuate during that time. Then, at the end, the gynaecologist suggested a more extensive procedure. Namely a laparoscopy of the abdomen.
This would involve the gynaecologist making small incisions in my abdomen, to allow for a camera and tools to enter the abdomen. The goal of this would be to explore the organs and tissues present and take biopsies of relevant tissues. Ideally this would allow the gynaecologist to see exactly what is going inside my abdomen, and settle the question of which organs I have/do not have once and for all.
The coming weeks it should become clear when this procedure will take place. I fervently hope that this will definitively answer the question of whether I have a vagina which is usable for re-attachment to the perineum, while also putting to rest any fears I have about cancer and other potential issues which might be underlying my current health issues.
The procedure itself would be easy. I'd be put under completely, so after an hour or so I'd be waking up again to learn of the results and be able to leave the hospital the same day. With some luck those results would allow me to finally find that reconstructive surgeon for the final surgery. Hard to get better pre-surgery information than the video and biopsy results from a laparoscopy.
Who knows, maybe this will be the year when this 13-year old medical drama that is my current life will finally come to a (happy) end?
Maya
Friday, 26 January 2018
On visiting the pool as a hermaphrodite
It's sometimes frightening to note just how rapidly time can slip by sometimes. Such as yesterday when I went to a nearby swimming pool with a couple of friends, with my last recollection of visiting such a place being at least 6-7 years in the past.
What prompted me to go along to the pool with the others was an urging by my therapist to 'maybe do some sports'. I always maintained over the past years that all the cycling I do around the city is enough to keep me fit. Suffice it to say that yesterday's experience (and today's sore muscles) have proven me completely wrong on that account. Seldom have I felt more out of shape and somewhat humbled.
The positive side of yesterday's pool visit was cycling back afterwards feeling all fuzzy, warm and happy. As someone who has loved swimming already as a child, it was so good to be back in the water. Even if a large part of it is the dodging of other people in the pool as one tries to gets in one's laps, it's still a positive experience. As a bonus, the water was far less chlorinated than I'm used to from Dutch pools.
Not smelling for a day like one got caught in an accident involving a truck carrying chlorine is pretty nice, indeed.
After buying an entry ticket and figuring out how to use the entry gates, I met my next challenge: dressing cubicles. Since the whole place was under construction, still, it turned out that the number of private cubicles was rather limited. I wasn't going to enter any of the communal dressing rooms. I was there to swim, after all. Not worry about what other women might think of my extended set of accessories.
What was somewhat funny is that earlier yesterday in the local hackerspace's IRC chatroom another person expressed interest in tagging along to the pool as well, but expressed concern about wearing a bikini because she is a pre-op transgender person, and 'excess bits' would show up. I'm not sure whether I'm just special, but when I'm wearing a swimsuit or bikini you wouldn't know that I'm not a Human Female Model Mark 1. I almost mentioned this fact in the chat, but figured that it's still okay if people assume me to be just a regular female.
I guess I am glad for this fact, however. Being able to just go swimming without weird looks is nice. Probably the only reason why people might gawk at me is for apparently looking like an Attractive Human Female.
One thing which I found interesting at this pool compared to all the Dutch pools I have frequented, is that here they have a section for men and one for women which has the toilets and showers. With Dutch pools there's usually an open shower section in the entrance to the pool itself, meaning that you get a quick rinse before entering the pool and after leaving it.
At the pool I visited yesterday, this meant that as a result it was common practice to strip down fully after swimming, much as one would do when at home. Though they also have two private showers, most women I saw there seemed to have no issues with slipping out of their swimsuit or bikini. To be honest, I kind of like this. There's nothing to be ashamed of, after all.
Except for me, maybe. While I had no qualms about stripping down the top part of my swimsuit, I figured I'd not slip out of it fully. Even if I already had had the reconstructive surgery for the vagina, the presence of bonus parts would at the very least lead to uncomfortable looks and, worst case, upset people. No use in chancing it.
In some ways a pool visit is a rather intimate experience, as it requires one to expose oneself and one's body in ways which we're not generally used to in daily life, and all of that in public. Suddenly everybody can see what you have kept hidden underneath layers of clothing. Be it scars, an old tattoo, that tummy that just won't shrink, or the fact that you're not technically male or female.
For that reason I have avoided saunas like the plague, for one. Even though I am not ashamed of being a hermaphrodite (hermaphroditic intersex person), it's especially at places such as pools and saunas where one can no longer just coast along on the assumption by others that one is simply female. I'm not sure what the solution there is. If there even is one.
I guess yesterday's experience once more made me understand other hermaphrodites who choose to just have one side chopped off and removed from their body a little bit more. Though I do not feel nearly as uncomfortable with my body today as I used to only a few years ago, it is hard to shake off this feeling of loneliness that comes with being different enough to fall outside of society.
Thinking back to how I could just have gone along with all those attempts by dozens of doctors and psychologists to convince me that I was transgender. If I had pulled it off, I might now have had genital surgery, removing the male bits (and likely any female bits they found...) and be a normal human female. Kinda. Sorta. It would feel horribly fake to me. I would not be 'me'.
Yet the mental struggle to keep rejecting the seductive lure of 'just getting all the strife over with' remains. At least so long as there is not truly a place for us hermaphrodites. Being ourselves is a tough job, every day again. To be something which you know exists, but others do not, or dismiss it as little more than a myth.
This must be exactly what a unicorn would feel like, I guess.
Maya
What prompted me to go along to the pool with the others was an urging by my therapist to 'maybe do some sports'. I always maintained over the past years that all the cycling I do around the city is enough to keep me fit. Suffice it to say that yesterday's experience (and today's sore muscles) have proven me completely wrong on that account. Seldom have I felt more out of shape and somewhat humbled.
The positive side of yesterday's pool visit was cycling back afterwards feeling all fuzzy, warm and happy. As someone who has loved swimming already as a child, it was so good to be back in the water. Even if a large part of it is the dodging of other people in the pool as one tries to gets in one's laps, it's still a positive experience. As a bonus, the water was far less chlorinated than I'm used to from Dutch pools.
Not smelling for a day like one got caught in an accident involving a truck carrying chlorine is pretty nice, indeed.
After buying an entry ticket and figuring out how to use the entry gates, I met my next challenge: dressing cubicles. Since the whole place was under construction, still, it turned out that the number of private cubicles was rather limited. I wasn't going to enter any of the communal dressing rooms. I was there to swim, after all. Not worry about what other women might think of my extended set of accessories.
What was somewhat funny is that earlier yesterday in the local hackerspace's IRC chatroom another person expressed interest in tagging along to the pool as well, but expressed concern about wearing a bikini because she is a pre-op transgender person, and 'excess bits' would show up. I'm not sure whether I'm just special, but when I'm wearing a swimsuit or bikini you wouldn't know that I'm not a Human Female Model Mark 1. I almost mentioned this fact in the chat, but figured that it's still okay if people assume me to be just a regular female.
I guess I am glad for this fact, however. Being able to just go swimming without weird looks is nice. Probably the only reason why people might gawk at me is for apparently looking like an Attractive Human Female.
One thing which I found interesting at this pool compared to all the Dutch pools I have frequented, is that here they have a section for men and one for women which has the toilets and showers. With Dutch pools there's usually an open shower section in the entrance to the pool itself, meaning that you get a quick rinse before entering the pool and after leaving it.
At the pool I visited yesterday, this meant that as a result it was common practice to strip down fully after swimming, much as one would do when at home. Though they also have two private showers, most women I saw there seemed to have no issues with slipping out of their swimsuit or bikini. To be honest, I kind of like this. There's nothing to be ashamed of, after all.
Except for me, maybe. While I had no qualms about stripping down the top part of my swimsuit, I figured I'd not slip out of it fully. Even if I already had had the reconstructive surgery for the vagina, the presence of bonus parts would at the very least lead to uncomfortable looks and, worst case, upset people. No use in chancing it.
In some ways a pool visit is a rather intimate experience, as it requires one to expose oneself and one's body in ways which we're not generally used to in daily life, and all of that in public. Suddenly everybody can see what you have kept hidden underneath layers of clothing. Be it scars, an old tattoo, that tummy that just won't shrink, or the fact that you're not technically male or female.
For that reason I have avoided saunas like the plague, for one. Even though I am not ashamed of being a hermaphrodite (hermaphroditic intersex person), it's especially at places such as pools and saunas where one can no longer just coast along on the assumption by others that one is simply female. I'm not sure what the solution there is. If there even is one.
I guess yesterday's experience once more made me understand other hermaphrodites who choose to just have one side chopped off and removed from their body a little bit more. Though I do not feel nearly as uncomfortable with my body today as I used to only a few years ago, it is hard to shake off this feeling of loneliness that comes with being different enough to fall outside of society.
Thinking back to how I could just have gone along with all those attempts by dozens of doctors and psychologists to convince me that I was transgender. If I had pulled it off, I might now have had genital surgery, removing the male bits (and likely any female bits they found...) and be a normal human female. Kinda. Sorta. It would feel horribly fake to me. I would not be 'me'.
Yet the mental struggle to keep rejecting the seductive lure of 'just getting all the strife over with' remains. At least so long as there is not truly a place for us hermaphrodites. Being ourselves is a tough job, every day again. To be something which you know exists, but others do not, or dismiss it as little more than a myth.
This must be exactly what a unicorn would feel like, I guess.
Maya
Monday, 15 January 2018
Hanging around while feeling unneeded
It is normal for any human being to want to feel wanted, needed and possibly even loved. To remove or blunt that desire means to strip a person of their empathy, of any shred of love for themselves and ultimately the will to live.
For the past decades I have struggled with being 'different' in a variety of ways. First there was me being gifted, and a purely visual-spatial thinker. This was what first got me isolated during primary school and severely bullied and beaten up on a number of occasions. My only friends during my school period were the other outcasts and misfits.
Then there was the intersex thing. To discover that I never was a male. That my body wasn't at all what I had been told what it was supposed to be. To society I merely changed from a male into a female role, but underneath my skin things are infinitely more complex. Organs, or at least functional tissues, have kicked into action and forced my body to become definitely more feminine along with repairing old scars and the like. Yet I will never be a woman. Once a hermaphrodite, always a hermaphrodite.
Thirteen years. That's the current count for how long I have been trying to figure out what this body of mine is about, and more recently why I'm suffering chronic pain, abdominal distension, etc. Last month I finally figured out that what has been causing a lot of pain and discomfort since I was 11 years old are fissures, at least in the rectum judging by the blood. Possibly in the vagina as well. What causes those constant fissures, however?
The most reasonable theory which I have so far discussed with my GP is that there's a build-up of fluids inside the vagina and/or around that area, which causes the rectal wall to bulge inwards, at which point regular toilet visits would shred this wall, causing constant fissures. Those fissures and discomfort experienced each month also only occur on the side between the rectal and vaginal walls.
As for the actual cause behind all of this, and possible outcomes, there are many possibilities. Everything from rectal wall spasms to ovarian cancer and lots of secondary causes. The coming months I hope to learn more.
Yet it's been thirteen years. Thirteen years during which everything rapidly became clear to me what had to be done and examined. It still feels as if doctors are only just catching up on the need to actually examine a hermaphroditic body for possible complications due to the irregular formation of certain tissues and organs on account of having two distinct sets of DNA try to steer the same mechanisms.
It feels as if the only reason why I'm being taken more seriously now is because all of those issues which I was worried about for over a decade already are now finally beginning to appear. Finally something which they can understand and act upon, maybe. It's too easy to feel bitter at this.
Apparently certain types of cancer are more prevalent among hermaphrodites, specifically those of the reproductive organs. Sepsis is also much more common, for when fluids get trapped and become infected. I have read up on this and tried to convince doctors of the urgency to determine which organs I have in my abdomen for this reason. Instead all I got was one side telling me that I had a normal male body, and the other side that I have a hermaphroditic body. Attempts to focus on the latter did not pay off.
What might save or still end up killing me is time. Simply wait long enough until things start going wrong and you can present concrete symptoms to doctors. From numbness and pain in one's limbs to abdominal distension (from 70 to 82 cm), the aforementioned fissures accompanied with bright red blood and the sensation of a lot of fluid being trapped underneath the skin in the vaginal area. They have their work cut out for them.
Yet nobody still cares about me being intersex.
I guess that the gifted thing keeps haunting me. I was always the one to question everything. The child who preferred to hang out with adults instead of with those their own age. The one who couldn't stop learning, questioning and dreaming. I cannot just 'be'. For me 'Hell' is a life lived without meaning.
You know what lies at the end of every single 'why'?' question? Nothing. Because the universe just is. There's no reason for its existence, just like there is no reason for our own existence. We exist because along a line of ancestors there were always those who had to mate and produce offspring. Why? Because.
Yet the universe is not without meaning. Through its existence it produces stars, galaxies and much, much more. Life is the same. A life lived well produces its own meaning. I guess this is the primary reason why I feel as if I'm being suffocated when I consider a reduction of being able to live. To do a menial, meaningless job working on something which in the end nobody really cares about, for example.
In some ways I am a thrill-seeker, I guess. Just not by risking my own life and health, but by seeking new intellectual challenges. By challenging certainties in science and technology. To me that is what gives life meaning. Any other existence is too terrifying for me to consider.
This, too, makes me a poor fit for society.
What more is there that makes me truly unfit to function in society and prevents me from feeling like I belong or am needed anywhere? Nobody needs my traumatic experiences recounted to them, I'm sure. What happened to me when I was five years old is my own problem. It's my responsibility to make sure it doesn't interfere with me pretending to be a Normal Human.
Many things which are 'different' about me are mostly just quaint, though, I guess. From being ambidextrous, to being a super-taster and so on. They just make me 'slightly odd', I reckon.
I guess that in the end the question with which I am left is a simple: where to from here?
Without a job or anything else to keep me tied down to this country of Germany, I am free to go and work and live anywhere in the world. Assuming someone needs me. Something exciting. Something hard and challenging. Something that can keep my interest.
The simple trick is to find the right employer.
Or just go into academics and forget about the 'real' world :)
Maya
For the past decades I have struggled with being 'different' in a variety of ways. First there was me being gifted, and a purely visual-spatial thinker. This was what first got me isolated during primary school and severely bullied and beaten up on a number of occasions. My only friends during my school period were the other outcasts and misfits.
Then there was the intersex thing. To discover that I never was a male. That my body wasn't at all what I had been told what it was supposed to be. To society I merely changed from a male into a female role, but underneath my skin things are infinitely more complex. Organs, or at least functional tissues, have kicked into action and forced my body to become definitely more feminine along with repairing old scars and the like. Yet I will never be a woman. Once a hermaphrodite, always a hermaphrodite.
Thirteen years. That's the current count for how long I have been trying to figure out what this body of mine is about, and more recently why I'm suffering chronic pain, abdominal distension, etc. Last month I finally figured out that what has been causing a lot of pain and discomfort since I was 11 years old are fissures, at least in the rectum judging by the blood. Possibly in the vagina as well. What causes those constant fissures, however?
The most reasonable theory which I have so far discussed with my GP is that there's a build-up of fluids inside the vagina and/or around that area, which causes the rectal wall to bulge inwards, at which point regular toilet visits would shred this wall, causing constant fissures. Those fissures and discomfort experienced each month also only occur on the side between the rectal and vaginal walls.
As for the actual cause behind all of this, and possible outcomes, there are many possibilities. Everything from rectal wall spasms to ovarian cancer and lots of secondary causes. The coming months I hope to learn more.
Yet it's been thirteen years. Thirteen years during which everything rapidly became clear to me what had to be done and examined. It still feels as if doctors are only just catching up on the need to actually examine a hermaphroditic body for possible complications due to the irregular formation of certain tissues and organs on account of having two distinct sets of DNA try to steer the same mechanisms.
It feels as if the only reason why I'm being taken more seriously now is because all of those issues which I was worried about for over a decade already are now finally beginning to appear. Finally something which they can understand and act upon, maybe. It's too easy to feel bitter at this.
Apparently certain types of cancer are more prevalent among hermaphrodites, specifically those of the reproductive organs. Sepsis is also much more common, for when fluids get trapped and become infected. I have read up on this and tried to convince doctors of the urgency to determine which organs I have in my abdomen for this reason. Instead all I got was one side telling me that I had a normal male body, and the other side that I have a hermaphroditic body. Attempts to focus on the latter did not pay off.
What might save or still end up killing me is time. Simply wait long enough until things start going wrong and you can present concrete symptoms to doctors. From numbness and pain in one's limbs to abdominal distension (from 70 to 82 cm), the aforementioned fissures accompanied with bright red blood and the sensation of a lot of fluid being trapped underneath the skin in the vaginal area. They have their work cut out for them.
Yet nobody still cares about me being intersex.
I guess that the gifted thing keeps haunting me. I was always the one to question everything. The child who preferred to hang out with adults instead of with those their own age. The one who couldn't stop learning, questioning and dreaming. I cannot just 'be'. For me 'Hell' is a life lived without meaning.
You know what lies at the end of every single 'why'?' question? Nothing. Because the universe just is. There's no reason for its existence, just like there is no reason for our own existence. We exist because along a line of ancestors there were always those who had to mate and produce offspring. Why? Because.
Yet the universe is not without meaning. Through its existence it produces stars, galaxies and much, much more. Life is the same. A life lived well produces its own meaning. I guess this is the primary reason why I feel as if I'm being suffocated when I consider a reduction of being able to live. To do a menial, meaningless job working on something which in the end nobody really cares about, for example.
In some ways I am a thrill-seeker, I guess. Just not by risking my own life and health, but by seeking new intellectual challenges. By challenging certainties in science and technology. To me that is what gives life meaning. Any other existence is too terrifying for me to consider.
This, too, makes me a poor fit for society.
What more is there that makes me truly unfit to function in society and prevents me from feeling like I belong or am needed anywhere? Nobody needs my traumatic experiences recounted to them, I'm sure. What happened to me when I was five years old is my own problem. It's my responsibility to make sure it doesn't interfere with me pretending to be a Normal Human.
Many things which are 'different' about me are mostly just quaint, though, I guess. From being ambidextrous, to being a super-taster and so on. They just make me 'slightly odd', I reckon.
I guess that in the end the question with which I am left is a simple: where to from here?
Without a job or anything else to keep me tied down to this country of Germany, I am free to go and work and live anywhere in the world. Assuming someone needs me. Something exciting. Something hard and challenging. Something that can keep my interest.
The simple trick is to find the right employer.
Or just go into academics and forget about the 'real' world :)
Maya
Monday, 25 December 2017
Everything begins and ends with one's body
The moment that one is born and becomes conscious, the world begins.
The moment that one's body falters and dies, the world ends.
Everything in between is coloured by the health of one's body.
I remember how there was a time when I could walk without pain. I remember how I wasn't concerned every few minutes with new, interesting pains or the general state of my body. That seems all so long ago now. Part of a past in which there was still sunshine, a home and happiness. Not this bleak dystopian present with a faltering health and more hospital and ER visits than I care to remember.
Next month another three doctor visits have been scheduled, with my GP, neurologist and gynaecologist. My endocrinologist also asked to remain informed, along with a second gynaecologist. Next month is also planned full with psychotherapist appointments, with my second psychotherapist (and neurologist) likely wanting updates or maybe getting me some updates. I don't want to harbour hope that this time something will change. Yet it must.
After giving up on the contraceptive pill, ibuprofen and mostly on diclofenac, I have now found a temporary pain reprieve in CBD - cannabidiol, a cannabinoid extracted from cannabis. I'm slowly beginning to understand why medical marijuana is a thing. CBD manages to knock down the daily pains and numbness a few notches to where I can somewhat function and focus again. Yet it's not a solution.
The pain, sensitivity and numbness that used to just plague my right side has been gradually spreading to my left side as well. It doesn't go away in between monthly cycles any more either. I still don't know what causes it and how much internal damage I'm possibly suffering each day that it is not being treated.
Today is Christmas. Yet I'm not feeling very cheerful. Not when one has to confront such comforting thoughts such as this possibly being my last Christmas. With the enthusiasm doctors have shown for my case so far, I am not hopeful that they'll get to the right conclusion in time if what is happening to me turns out to be fatal. And even if it's not, I might end up paralysed or incapable of functioning any more without extreme painkillers, judging by how my situation has progressed so far.
Being in this much pain and discomfort, along with frequent nausea, dizziness, headaches and a near-complete lack of appetite make that just maintaining my body to keep to the status quo as much as possible is taking nearly all of my attention and energy.
Sure, I'm also supposed to find a new job, and I might get kicked out of this apartment soon, but first things first. If my body isn't doing well, then that makes everything else seem rather minor. It's amazing how intense pain refocuses one's priorities, I guess. If survival takes becoming homeless, then that's a price worth paying. I think. Yet being dead because one didn't prioritise one's body over everything else is also such a bummer.
For the coming months I pray that things somehow work out. That the doctors do take my condition seriously and that the cause of these pains and numbness is found and treated. That the new job thing works out and that I may even find a real home again in the process. That my daily life will no longer be darkened by having a faltering body.
Hoping for the kindness and understanding of others, I guess.
May the gods have mercy on my soul.
Maya
The moment that one's body falters and dies, the world ends.
Everything in between is coloured by the health of one's body.
I remember how there was a time when I could walk without pain. I remember how I wasn't concerned every few minutes with new, interesting pains or the general state of my body. That seems all so long ago now. Part of a past in which there was still sunshine, a home and happiness. Not this bleak dystopian present with a faltering health and more hospital and ER visits than I care to remember.
Next month another three doctor visits have been scheduled, with my GP, neurologist and gynaecologist. My endocrinologist also asked to remain informed, along with a second gynaecologist. Next month is also planned full with psychotherapist appointments, with my second psychotherapist (and neurologist) likely wanting updates or maybe getting me some updates. I don't want to harbour hope that this time something will change. Yet it must.
After giving up on the contraceptive pill, ibuprofen and mostly on diclofenac, I have now found a temporary pain reprieve in CBD - cannabidiol, a cannabinoid extracted from cannabis. I'm slowly beginning to understand why medical marijuana is a thing. CBD manages to knock down the daily pains and numbness a few notches to where I can somewhat function and focus again. Yet it's not a solution.
The pain, sensitivity and numbness that used to just plague my right side has been gradually spreading to my left side as well. It doesn't go away in between monthly cycles any more either. I still don't know what causes it and how much internal damage I'm possibly suffering each day that it is not being treated.
Today is Christmas. Yet I'm not feeling very cheerful. Not when one has to confront such comforting thoughts such as this possibly being my last Christmas. With the enthusiasm doctors have shown for my case so far, I am not hopeful that they'll get to the right conclusion in time if what is happening to me turns out to be fatal. And even if it's not, I might end up paralysed or incapable of functioning any more without extreme painkillers, judging by how my situation has progressed so far.
Being in this much pain and discomfort, along with frequent nausea, dizziness, headaches and a near-complete lack of appetite make that just maintaining my body to keep to the status quo as much as possible is taking nearly all of my attention and energy.
Sure, I'm also supposed to find a new job, and I might get kicked out of this apartment soon, but first things first. If my body isn't doing well, then that makes everything else seem rather minor. It's amazing how intense pain refocuses one's priorities, I guess. If survival takes becoming homeless, then that's a price worth paying. I think. Yet being dead because one didn't prioritise one's body over everything else is also such a bummer.
For the coming months I pray that things somehow work out. That the doctors do take my condition seriously and that the cause of these pains and numbness is found and treated. That the new job thing works out and that I may even find a real home again in the process. That my daily life will no longer be darkened by having a faltering body.
Hoping for the kindness and understanding of others, I guess.
May the gods have mercy on my soul.
Maya
Tuesday, 19 December 2017
I should focus on my health first, if I can
Last night I woke up a few times again with terrible pains in my abdomen, yet I was able to fall asleep again after the pain subsided. This morning I noticed that my abdomen is horribly distended again, making it look as if I'm quite a few months pregnant. Pulling in my stomach makes it look more or less normal, but the pain remains throughout my abdomen and lower back.
The entire day I'm feeling somewhat feverish and out of it. My left leg is also beginning to feel numb, with the typical pain in my left knee which I used to feel only in my right knee before. My left side is beginning to hurt more and more, the same way that my right side started hurting, years ago. I'm still trying to get through the day without painkillers, beyond the occasional ibuprofen or bit of diclofenac gel on my abdomen for when things get really bad.
Even then I feel completely drained at the end of the day from having to suffer through the frequent surges of pain, and the sensation of being ripped apart below whenever I go to the toilet.
I am so tired. I don't want this any more. I'm so sick of everything.
That's what I found myself proclaiming earlier as I got back from work. It's hard for me to properly realise when I'm tired, as I have been suffering through so much physical and psychological pain for over a decade now. It's become 'normal'. Yet there's still only so much pain my body and mind can take. And I'm completely through. Drained. Exhausted. Unable to give or take any more.
Earlier I found a letter in the mailbox about an appointment at the local job office to talk about my efforts to get a new job. It's hard not to start laughing hysterically at such a phrasing. I could easily accept one of the potential couple of job offers from headhunters. Finding a job I also want is harder, but not impossible given a bit of time. Yet more pressing is my current health.
Next month I also have an appointment scheduled with my GP, neurologist and gynaecologist, along with weekly appointments with my therapist. My hope is to get them to realise the seriousness of what is happening to my body at this point, along with the psychological pressure this creates.
When I can barely walk normally and increasingly find myself considering the possibility of needing a wheelchair at some point to get around, that's simply depressing. Makes one want to get up to one of those learned types and yell at them to finally help me. That kind of pressure.
Why should I even care about a job if my body isn't healthy? When I'm suffering every single day, both physically and mentally? Why could anyone demand such a thing of me?
I need to rest. To find stability in my life. Not to find myself chased from one more thing to muster the energy for to another one. To find myself risking embracing that dark part of myself which doesn't care about things like happiness, others or even life. That part which just wants to destroy and annihilate. Which rejoices in me hurting myself. Which enjoys watching me suffer, as it brings me closer every day to once again try to find that sense of incredible peace.
When I attempt to take my own life again after giving up on it. The intense, wonderful feeling of serenity.
...
I really want it so badly.
...
When I feel relaxed and at ease that dark voice subsides once more. I try to hold onto that feeling of hope and peace which involves me living a happy life and not taking my own life. Yet there's only so much which I can do. I need to avoid stress, but I can only do so much there.
Me getting laid off is horrible. Me having to face more of the eviction case is horrible. Me finding a new place to live is horrible. Me finding a new job is horrible. Me losing more and more things which I thought i wouldn't have to give up is horrible. So much stress. So much pain I have to shield myself from. To numb myself and pretend it really doesn't hurt so much.
Until it does and I find myself helpless again against the intense pain and suffering. To feel tempted to embrace that sensation of being powerless. To accept the inevitability of me failing to pull through this one.
I need help. Badly. Lots of help.
Else I will die.
I still don't want to die.
Yet I'm so tired... and everything hurts so much...
Maya
The entire day I'm feeling somewhat feverish and out of it. My left leg is also beginning to feel numb, with the typical pain in my left knee which I used to feel only in my right knee before. My left side is beginning to hurt more and more, the same way that my right side started hurting, years ago. I'm still trying to get through the day without painkillers, beyond the occasional ibuprofen or bit of diclofenac gel on my abdomen for when things get really bad.
Even then I feel completely drained at the end of the day from having to suffer through the frequent surges of pain, and the sensation of being ripped apart below whenever I go to the toilet.
I am so tired. I don't want this any more. I'm so sick of everything.
That's what I found myself proclaiming earlier as I got back from work. It's hard for me to properly realise when I'm tired, as I have been suffering through so much physical and psychological pain for over a decade now. It's become 'normal'. Yet there's still only so much pain my body and mind can take. And I'm completely through. Drained. Exhausted. Unable to give or take any more.
Earlier I found a letter in the mailbox about an appointment at the local job office to talk about my efforts to get a new job. It's hard not to start laughing hysterically at such a phrasing. I could easily accept one of the potential couple of job offers from headhunters. Finding a job I also want is harder, but not impossible given a bit of time. Yet more pressing is my current health.
Next month I also have an appointment scheduled with my GP, neurologist and gynaecologist, along with weekly appointments with my therapist. My hope is to get them to realise the seriousness of what is happening to my body at this point, along with the psychological pressure this creates.
When I can barely walk normally and increasingly find myself considering the possibility of needing a wheelchair at some point to get around, that's simply depressing. Makes one want to get up to one of those learned types and yell at them to finally help me. That kind of pressure.
Why should I even care about a job if my body isn't healthy? When I'm suffering every single day, both physically and mentally? Why could anyone demand such a thing of me?
I need to rest. To find stability in my life. Not to find myself chased from one more thing to muster the energy for to another one. To find myself risking embracing that dark part of myself which doesn't care about things like happiness, others or even life. That part which just wants to destroy and annihilate. Which rejoices in me hurting myself. Which enjoys watching me suffer, as it brings me closer every day to once again try to find that sense of incredible peace.
When I attempt to take my own life again after giving up on it. The intense, wonderful feeling of serenity.
...
I really want it so badly.
...
When I feel relaxed and at ease that dark voice subsides once more. I try to hold onto that feeling of hope and peace which involves me living a happy life and not taking my own life. Yet there's only so much which I can do. I need to avoid stress, but I can only do so much there.
Me getting laid off is horrible. Me having to face more of the eviction case is horrible. Me finding a new place to live is horrible. Me finding a new job is horrible. Me losing more and more things which I thought i wouldn't have to give up is horrible. So much stress. So much pain I have to shield myself from. To numb myself and pretend it really doesn't hurt so much.
Until it does and I find myself helpless again against the intense pain and suffering. To feel tempted to embrace that sensation of being powerless. To accept the inevitability of me failing to pull through this one.
I need help. Badly. Lots of help.
Else I will die.
I still don't want to die.
Yet I'm so tired... and everything hurts so much...
Maya
Sunday, 17 December 2017
I must find that exceptionally challenging and rewarding job
I must. That's pretty much the summary of everything that is going on for me at this point.
For the chronic pains for which I must find medical help. For the worrying appearance of blood in my stool accompanied by the sensation of something rupturing inside my abdomen, for which I must also seek medical help. For the flaring up of my post-traumatic stress disorder and dissociative identity disorder-like symptoms as a result of the increasing stress I also must find more help and support.
For having been laid off from my job I must find a new job. For being jobless I will have to deal with the job centre starting next month and have to apply to at least so many jobs each month, or lose the welfare money. For being jobless I must find a job within a year or face deportation back to the Netherlands.
For fixing the apartment and eviction situation I must at least find a new place, for which I must first find a job. To rent or buy a new place, I must have a job.
All of this leaves me jobless, with chronic pain and psychological disorders which prevent me from functioning 'normally'.
I must fix it somehow. By myself. Even if it's impossible. Again I feel angry at myself for having wasted so many years on my intersex condition and backwards doctors without a shred of sympathy. I should have ignored it. Made a much more successful career. Then died in my 30s from sepsis anyway. Bugger.
It often doesn't feel as if there's any point to me fighting for myself any longer. It's just the same pattern every time. Few steps forward, then get kicked back to a worse position than before.
I realise that I could just settle for working a menial job at a dull company, but in that case I would have made it at my current employer as well, writing JavaScript or Java code until my brain started dribbling out of my ears from sheer boredom. I know that this won't ever work.
Ideally I would get a job in a more R&D position involving low-level software and hardware development. Working on interesting new technologies which will make the lives of everyone better. Something that can actually hold my attention. I already had to thank for a potential job offer this week because it'd just involve writing casual games (albeit in C++) all the time. I could do it, but would get distracted over time. That's what I learned about how my mind works.
My curse always seems to have been that I could never be 'just like others'. Not with my biological sex (hermaphroditic intersex), not with being just left- or right-handed (ambidextrous), not with my perception of taste (super-taster), or the way that I learn (100% visual-spatial learner, gifted & auto-didactic). None of this is my fault, all of this I was simply born with. Yet to then fit in regular society? Forget it. Been there, tried it, failed miserably, tried again and again until I finally learned that lesson.
I don't think that I would be happy in any other job than one which would challenge me intellectually and which appreciates me for being different. I guess I must keep looking... but I also hope that such a company is also looking for someone like me, and may stumble over my profile somewhere.
Can't hurt to hope, just to have that hope crushed, I guess.
Here's to that never-ending source of hope.
Maya
For the chronic pains for which I must find medical help. For the worrying appearance of blood in my stool accompanied by the sensation of something rupturing inside my abdomen, for which I must also seek medical help. For the flaring up of my post-traumatic stress disorder and dissociative identity disorder-like symptoms as a result of the increasing stress I also must find more help and support.
For having been laid off from my job I must find a new job. For being jobless I will have to deal with the job centre starting next month and have to apply to at least so many jobs each month, or lose the welfare money. For being jobless I must find a job within a year or face deportation back to the Netherlands.
For fixing the apartment and eviction situation I must at least find a new place, for which I must first find a job. To rent or buy a new place, I must have a job.
All of this leaves me jobless, with chronic pain and psychological disorders which prevent me from functioning 'normally'.
I must fix it somehow. By myself. Even if it's impossible. Again I feel angry at myself for having wasted so many years on my intersex condition and backwards doctors without a shred of sympathy. I should have ignored it. Made a much more successful career. Then died in my 30s from sepsis anyway. Bugger.
It often doesn't feel as if there's any point to me fighting for myself any longer. It's just the same pattern every time. Few steps forward, then get kicked back to a worse position than before.
I realise that I could just settle for working a menial job at a dull company, but in that case I would have made it at my current employer as well, writing JavaScript or Java code until my brain started dribbling out of my ears from sheer boredom. I know that this won't ever work.
Ideally I would get a job in a more R&D position involving low-level software and hardware development. Working on interesting new technologies which will make the lives of everyone better. Something that can actually hold my attention. I already had to thank for a potential job offer this week because it'd just involve writing casual games (albeit in C++) all the time. I could do it, but would get distracted over time. That's what I learned about how my mind works.
My curse always seems to have been that I could never be 'just like others'. Not with my biological sex (hermaphroditic intersex), not with being just left- or right-handed (ambidextrous), not with my perception of taste (super-taster), or the way that I learn (100% visual-spatial learner, gifted & auto-didactic). None of this is my fault, all of this I was simply born with. Yet to then fit in regular society? Forget it. Been there, tried it, failed miserably, tried again and again until I finally learned that lesson.
I don't think that I would be happy in any other job than one which would challenge me intellectually and which appreciates me for being different. I guess I must keep looking... but I also hope that such a company is also looking for someone like me, and may stumble over my profile somewhere.
Can't hurt to hope, just to have that hope crushed, I guess.
Here's to that never-ending source of hope.
Maya
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