The good news is that I managed to make an appointment with this new surgeon earlier this morning without issues. The not so great news is that the appointment isn't until the end of February. Another three-month wait there, in other words. Any hope that my last medical issues might be resolved has pretty much died at this point. Whether there'll be a surgery next year even if everything works out is doubtful at best, I think. I'll have to wait and see.
Worse news is that the earlier mentioned bronchitis is still there. After spending a few hours on Thursday outdoors in the cold the previous progress seems to have reversed itself and I'm now health-wise back where I was over a week ago. Tomorrow I'll see my family doctor about this and see what she can tell me about what I have exactly and how many weeks I'll be out of commission.
On the bright side, I should at least be healthy by the time February rolls around and the winter should be almost over so that I won't have to travel in the cold and snow when I head to the clinic.
Maya
Monday, 28 November 2016
Friday, 25 November 2016
Ultimately others decide what my body is
Yesterday's appointment with my psychotherapist was more or less as expected. After I worked myself out of the severe depression of two weeks ago, I expected to get help arranging matters with the surgeon, which I did. Today the psychotherapist called the clinic again and an assistant called me. Unfortunately she called on my mobile phone, which I had left at home. No voice mail was left, so I'm not entirely sure how this will continue come Monday. Hopefully I'll have an appointment with the surgeon next month.
While talking through some issues, I once again realised the horrible truth that no matter what might be the factual reality of what my body is, ultimately it's all down to the opinion of a physician which determines what it can be. No matter that a surgeon cut me open and documented their findings. Another doctor is free to dispute those findings. I can find another doctor, who can also dispute those findings. And again. And so on.
This basically summarises the six hellish years I spent in the Netherlands after I found out about my intersex condition. Nearly three years during which I just had my own suspicions and the research I had performed using my own body and medical literature. Then the MRI-based evidence from Germany concluding that I'm a hermaphrodite. Then over six years of Dutch physicians doing their utmost to ignore and discredit this evidence.
Now I'm back at the same point. It doesn't matter that just over five years ago to this day I was lying cut open on a surgery table with a surgeon documenting the presence of female genitals. This new surgeon can still dismiss those findings and proclaim that nothing unusual was found on the MRI scan images. That I'm just a feminine-looking guy. A guy with perfect female dress sizes, natural female hormone levels and a regular, monthly period since the age of eleven.
Nothing matters. It's all up to the whims of others what I'll end up being, end up feeling and how I'll be living, or not.
I hope it all works out this time.
Maya
While talking through some issues, I once again realised the horrible truth that no matter what might be the factual reality of what my body is, ultimately it's all down to the opinion of a physician which determines what it can be. No matter that a surgeon cut me open and documented their findings. Another doctor is free to dispute those findings. I can find another doctor, who can also dispute those findings. And again. And so on.
This basically summarises the six hellish years I spent in the Netherlands after I found out about my intersex condition. Nearly three years during which I just had my own suspicions and the research I had performed using my own body and medical literature. Then the MRI-based evidence from Germany concluding that I'm a hermaphrodite. Then over six years of Dutch physicians doing their utmost to ignore and discredit this evidence.
Now I'm back at the same point. It doesn't matter that just over five years ago to this day I was lying cut open on a surgery table with a surgeon documenting the presence of female genitals. This new surgeon can still dismiss those findings and proclaim that nothing unusual was found on the MRI scan images. That I'm just a feminine-looking guy. A guy with perfect female dress sizes, natural female hormone levels and a regular, monthly period since the age of eleven.
Nothing matters. It's all up to the whims of others what I'll end up being, end up feeling and how I'll be living, or not.
I hope it all works out this time.
Maya
Sunday, 20 November 2016
Bronchitis, or: Get some real rest, or else
The past weeks I didn't feel so great already, with fatigue and coughing, and the past days occasionally pangs of pain in my chest. I initially just ascribed it to a bit of a cold or something, but yesterday the chest pains became ridiculously painful. Conclusion: bronchitis or similar.
Today I'm feeling even worse than yesterday, which underlines the advice given for recovering from bronchitis: rest and plenty of fluids. The drinking of fluids is easy enough, with lots of water and hot tea. The 'rest' part is something I have the most trouble with. Other people seem to get along just fine with doing 'nothing' for a while, but for me I'd even get bored as a child during the few times that I was sick and had to stay in bed.
The least I can do is to stay indoors, stay warm and don't stress myself too much. Unfortunately I still have to do household chores, including cooking of dinner. I'd also freak out if I couldn't sit in front of my PC and/or at my electronics desk and work on projects. There's a reason why 'vacation' sounds like 'purgatory' to me. I have never been good at not occupying myself with a project. Or ten.
So rest it is... along with the slight worry about the impact of this poorly insulated apartment on my health during the coming winter, and the immense stress of whether I'll see any chance of getting medical help vanish forever later next week when I see my psychotherapist again. Not getting a response from a doctor who was supposed to help me is the first break in the unexpected line of medical progress with my intersex condition which started last year. It's hard not to think that it was all just another bitter illusion of hope, soon to be shattered.
I'll try not to get too worried about medical issues, or my apartment slowly killing me. Maybe play a game or two and pretend I'm 'resting'. I can do this, maybe :)
Maya
Today I'm feeling even worse than yesterday, which underlines the advice given for recovering from bronchitis: rest and plenty of fluids. The drinking of fluids is easy enough, with lots of water and hot tea. The 'rest' part is something I have the most trouble with. Other people seem to get along just fine with doing 'nothing' for a while, but for me I'd even get bored as a child during the few times that I was sick and had to stay in bed.
The least I can do is to stay indoors, stay warm and don't stress myself too much. Unfortunately I still have to do household chores, including cooking of dinner. I'd also freak out if I couldn't sit in front of my PC and/or at my electronics desk and work on projects. There's a reason why 'vacation' sounds like 'purgatory' to me. I have never been good at not occupying myself with a project. Or ten.
So rest it is... along with the slight worry about the impact of this poorly insulated apartment on my health during the coming winter, and the immense stress of whether I'll see any chance of getting medical help vanish forever later next week when I see my psychotherapist again. Not getting a response from a doctor who was supposed to help me is the first break in the unexpected line of medical progress with my intersex condition which started last year. It's hard not to think that it was all just another bitter illusion of hope, soon to be shattered.
I'll try not to get too worried about medical issues, or my apartment slowly killing me. Maybe play a game or two and pretend I'm 'resting'. I can do this, maybe :)
Maya
Friday, 18 November 2016
This world cannot be real
Last week my psychotherapist contacted me to inform me that she had been unable to get into contact with the surgeon. Instead she had called the clinic and they told her there that I should contact the surgeon via the general email address for the clinic. This was a bit of a setback. Writing this email (in German), addressed at this surgeon proved to be very hard. Even though I regularly write German emails for my work, when I sat down to type the email to the surgeon, it was as though I had never used German.
It took me a few hours, then with help of Google Translate I managed to formulate something resembling a proper email which I sent off. The automatic response informed me that it would take at least five working days to get a response. It's been nearly ten working days now. For about a week now I have been struggling with intense depression as a result of having to suffer through more hope.
There's a very real possibility that I will not get a response, that even repeated reminders to the clinic will just make things drag on until ultimately the whole thing kind of bleeds to death. Just like every other time before, except for this one time when it did work out and I had this one surgery which changed my life.
Yet I do not believe any more that I will get this final surgery. I do not believe that physicians, psychologists, etc. really want to help me. I do not believe that being intersex makes me anything other than a pariah in the eyes of society. Next week is the next appointment with my psychotherapist. The temptation is strong to just end everything there.
Give up on the idea of help from surgeons, give up on getting help with the monthly pains, give up on PTSD therapy. Accept the very real possibility of living with chronic pain and the high chance of suffering sepsis or cancer as a result of an untreated, largely unexamined hermaphroditic condition.
At least I could maybe build up a life. Maybe.
Ignore everything to do with intersex, LGBTI and such nonsense from now on. Stop cooperating with the media. Stop helping other intersex people with advice. Pretend to be normal. Never finish my autobiography.
Focus on the things which can change. Things which I can control.
I know it's impossible to do so. I wouldn't have suffered through the past twelve years if it had been possible to give up on getting answers. The only way I have found which allowed me to give up was by being in enough pain that only suicide offered a solution. If I really gave up on things next week, I'd basically be choosing death.
Yet to continue like this, to constantly be forced to remind physicians of their duty and their job, to feel ever more like an unwanted pariah and pest is no solution either. I'm not sure in how far I should be taking these chronic pains and other symptoms seriously, or how bad they really are. Maybe it's normal to regularly feel so sick that it feels like one is dying. I don't know what's normal.
Maybe it's normal to have chronic pain, to accept living in deplorable apartments, to be ignored by doctors, and to feel tortured by both the briefness and unfairness of existence. Maybe depression is merely the acceptance of reality.
There's nothing which I would want more at this point than to have the surgeon contact me after all, have the surgery, find a wonderful home to buy next year and leave so many horrible experiences and memories behind me. Yet thinking like that involves hope, and hope is merely the prelude to suffering.
I want to be proven wrong. There's nothing which would please me more than to be able to not feel trapped by the whims of other people any longer, to have medical professionals revealed as actual, sympathetic human beings instead of uncaring alien beings stuffed into a human shell.
I want to feel human so badly myself. Not intersex, not a woman. Just myself. Yet I do not have all the answers yet and my psyche is too shattered and damaged at this point to give me anything but a garbled look at what this 'self' may be.
My enemy is hope. My enemy is time. My enemy is ignorance. My enemies are preconceptions and bias. I cannot fight against something which is intangible, or so firmly lodged into the psyche of others. I want to be nice to others and have others be nice to me, but I feel so saddened by the thought that most others do not think that way.
There's too much strife, anger and lack of understanding in this world.
Maybe my own small story will have a happy ending, or maybe not. I cannot tell. All I can do is stay away from the dark, dangerous parts of life. Even if it means abandoning all hope of a happy ending.
I pray it doesn't come to that.
Maya
It took me a few hours, then with help of Google Translate I managed to formulate something resembling a proper email which I sent off. The automatic response informed me that it would take at least five working days to get a response. It's been nearly ten working days now. For about a week now I have been struggling with intense depression as a result of having to suffer through more hope.
There's a very real possibility that I will not get a response, that even repeated reminders to the clinic will just make things drag on until ultimately the whole thing kind of bleeds to death. Just like every other time before, except for this one time when it did work out and I had this one surgery which changed my life.
Yet I do not believe any more that I will get this final surgery. I do not believe that physicians, psychologists, etc. really want to help me. I do not believe that being intersex makes me anything other than a pariah in the eyes of society. Next week is the next appointment with my psychotherapist. The temptation is strong to just end everything there.
Give up on the idea of help from surgeons, give up on getting help with the monthly pains, give up on PTSD therapy. Accept the very real possibility of living with chronic pain and the high chance of suffering sepsis or cancer as a result of an untreated, largely unexamined hermaphroditic condition.
At least I could maybe build up a life. Maybe.
Ignore everything to do with intersex, LGBTI and such nonsense from now on. Stop cooperating with the media. Stop helping other intersex people with advice. Pretend to be normal. Never finish my autobiography.
Focus on the things which can change. Things which I can control.
I know it's impossible to do so. I wouldn't have suffered through the past twelve years if it had been possible to give up on getting answers. The only way I have found which allowed me to give up was by being in enough pain that only suicide offered a solution. If I really gave up on things next week, I'd basically be choosing death.
Yet to continue like this, to constantly be forced to remind physicians of their duty and their job, to feel ever more like an unwanted pariah and pest is no solution either. I'm not sure in how far I should be taking these chronic pains and other symptoms seriously, or how bad they really are. Maybe it's normal to regularly feel so sick that it feels like one is dying. I don't know what's normal.
Maybe it's normal to have chronic pain, to accept living in deplorable apartments, to be ignored by doctors, and to feel tortured by both the briefness and unfairness of existence. Maybe depression is merely the acceptance of reality.
There's nothing which I would want more at this point than to have the surgeon contact me after all, have the surgery, find a wonderful home to buy next year and leave so many horrible experiences and memories behind me. Yet thinking like that involves hope, and hope is merely the prelude to suffering.
I want to be proven wrong. There's nothing which would please me more than to be able to not feel trapped by the whims of other people any longer, to have medical professionals revealed as actual, sympathetic human beings instead of uncaring alien beings stuffed into a human shell.
I want to feel human so badly myself. Not intersex, not a woman. Just myself. Yet I do not have all the answers yet and my psyche is too shattered and damaged at this point to give me anything but a garbled look at what this 'self' may be.
My enemy is hope. My enemy is time. My enemy is ignorance. My enemies are preconceptions and bias. I cannot fight against something which is intangible, or so firmly lodged into the psyche of others. I want to be nice to others and have others be nice to me, but I feel so saddened by the thought that most others do not think that way.
There's too much strife, anger and lack of understanding in this world.
Maybe my own small story will have a happy ending, or maybe not. I cannot tell. All I can do is stay away from the dark, dangerous parts of life. Even if it means abandoning all hope of a happy ending.
I pray it doesn't come to that.
Maya
Saturday, 12 November 2016
Why 3D films aren't true 3D
The big advantage of stereo vision is that it allows an individual to perceive far more about their environment than without it. One physically sees more, and one is able to judge distances and shapes far better. It is for these reasons that real 3D films have been a tantalising prospect for many decades, long after stereo photography became popular.
Over the past years I have had the chance to watch a number of 3D films, both truly filmed in 3D (Avatar) and later added with post-processing (2010's Alice in Wonderland). Even for films which were shot in 3D a number of large obstacles remain before they'll come close to a true 3D experience, such as that for example offered by Virtual Reality (VR) technology.
One of the main sticking points with 3D films has for a long time been the framerate, or lack thereof. Comparing the usual 24 frames-per-second (FPS) 3D films with the (much rarer) 48 FPS films, one can see that the latter is much smoother and more pleasant to look at, especially with panning or fast action scenes.
A few days ago I went to see my most recent 3D film, Doctor Strange, together with a bunch of friends. At this cinema they used a non-IMAX screen with active glasses, meaning not using polarised frames. Theoretically this makes for the best possible experience, as there will not be any overlap of frames per eye and not having the darkening effect of the polarisation.
The main issue with films trying to be 3D is that since they are filmed using lenses, they always have a focal point, effectively meaning a point that's in-focus in the scene while the rest is blurred. This is very disconcerting while looking around the scene as it feels as if one's vision isn't working normally. It also makes that every object that's not in focus (especially nearby objects) turns into a shapeless blob which one's mind cannot make heads or tails of.
Basically this means that you're not free to just look anywhere in the frame, but are forced to follow the focus of the camera. This is different from VR, where every part of the visible scene is in focus when you look at it. The resulting effect is of a scene which looks partially 3D and partially just like (blurry) 2D cut-outs.
One could say that this is no different from a 2D film, but the difference there is that the brain interprets a 2D image very differently from a stereoscopic one. With the former there's no expectation of it being a scene one can look around in, as it's just a flat image in which we can recognise shapes. With the latter the expectation is that it's just like our normal stereoscopic vision, but the limitations make that this is left unmet.
My personal experience is that of an experience markedly worse than the 3D effect experienced with VR and Nintendo's 3DS console. Some parts of scenes are cool due to the added 3D effect, but this is mostly when the camera has finally stopped moving and we get to focus on a close-up scene. Sadly such scenes are rare and in general I don't really feel that one misses a lot by watching it in 2D format.
Now if the FPS got upped to something reasonable (60+ FPS per eye?), and everything in the scene was in focus, then it would work. What we end up with today is kind of somewhat okay-ish at best, but nothing mind-blowing.
Especially after exposure to VR my feelings about current 3D films is that they're essentially a gimmick without a lot of added value.
Now VR... there's a topic which is truly mind-blowing. Part of me thinks that eventually VR will replace films as we know them today. I really hope it will and take films properly into the next dimension.
Maya
Over the past years I have had the chance to watch a number of 3D films, both truly filmed in 3D (Avatar) and later added with post-processing (2010's Alice in Wonderland). Even for films which were shot in 3D a number of large obstacles remain before they'll come close to a true 3D experience, such as that for example offered by Virtual Reality (VR) technology.
One of the main sticking points with 3D films has for a long time been the framerate, or lack thereof. Comparing the usual 24 frames-per-second (FPS) 3D films with the (much rarer) 48 FPS films, one can see that the latter is much smoother and more pleasant to look at, especially with panning or fast action scenes.
A few days ago I went to see my most recent 3D film, Doctor Strange, together with a bunch of friends. At this cinema they used a non-IMAX screen with active glasses, meaning not using polarised frames. Theoretically this makes for the best possible experience, as there will not be any overlap of frames per eye and not having the darkening effect of the polarisation.
The main issue with films trying to be 3D is that since they are filmed using lenses, they always have a focal point, effectively meaning a point that's in-focus in the scene while the rest is blurred. This is very disconcerting while looking around the scene as it feels as if one's vision isn't working normally. It also makes that every object that's not in focus (especially nearby objects) turns into a shapeless blob which one's mind cannot make heads or tails of.
Basically this means that you're not free to just look anywhere in the frame, but are forced to follow the focus of the camera. This is different from VR, where every part of the visible scene is in focus when you look at it. The resulting effect is of a scene which looks partially 3D and partially just like (blurry) 2D cut-outs.
One could say that this is no different from a 2D film, but the difference there is that the brain interprets a 2D image very differently from a stereoscopic one. With the former there's no expectation of it being a scene one can look around in, as it's just a flat image in which we can recognise shapes. With the latter the expectation is that it's just like our normal stereoscopic vision, but the limitations make that this is left unmet.
My personal experience is that of an experience markedly worse than the 3D effect experienced with VR and Nintendo's 3DS console. Some parts of scenes are cool due to the added 3D effect, but this is mostly when the camera has finally stopped moving and we get to focus on a close-up scene. Sadly such scenes are rare and in general I don't really feel that one misses a lot by watching it in 2D format.
Now if the FPS got upped to something reasonable (60+ FPS per eye?), and everything in the scene was in focus, then it would work. What we end up with today is kind of somewhat okay-ish at best, but nothing mind-blowing.
Especially after exposure to VR my feelings about current 3D films is that they're essentially a gimmick without a lot of added value.
Now VR... there's a topic which is truly mind-blowing. Part of me thinks that eventually VR will replace films as we know them today. I really hope it will and take films properly into the next dimension.
Maya
Saturday, 5 November 2016
Farewell pregnancy, for now
It was in June of last year that I first wrote about me discovering the signs of being pregnant, particularly the appearance of the vertical brown line, called 'linea nigra' on my abdomen. With an actual pregnancy being quite unlikely, I went through the medical madness of trying to have diagnosed what was going on.
The hints took a few months to trickle in, first in the form of an acquaintance who works in the medical profession informing me that this linea nigra can also appear when one has an excessive amount of oestrogens in one's system. This was followed a few months later by new blood tests showing that my own ovaries were producing normal levels of oestrogens on their own.
This meant that I was overdosing completely on oestrogens with the hormone therapy, resulting in the appearance of linea nigra, excessive PMS and other unpleasant symptoms. Since ceasing the hormone therapy - now about half a year ago - the linea nigra has virtually completely vanished from my abdomen and the PMS has become far more bearable, also without the general sensation of 'pressure' on my head.
In short, I was indeed not pregnant, but just going through a kind of second puberty, during which my ovaries asserted themselves by producing more estradiol than before and my body generally taking on a more regular female form.
The past months I have however become more and more acutely aware of a new pain with each period: that of a sensitive presence in my lower abdomen, located roughly where the uterus would be. Interesting here is that it's significantly more painful when I'm lying down than when sitting or standing, presumably because in the latter cases gravity and the midriff diaphragm would ensure that no other organs are pressing on this... uterus or whatever it is.
During many online discussions over the past months on sites such as Quora, the possibility of a hermaphrodite becoming pregnant has come up. For me it raises many questions. Once I was not supposed to have a vagina, but I do. I was not supposed to have ovaries, but I do. I was not supposed to have a uterus, but maybe I do as well? Even if I still do not have a usable uterus, it'd still raise the question of what I'd want to do if it turns out that my ovaries are capable of producing fertile eggs.
To be honest, they are not questions I'd really want to think about at this point. Not at this point in my life with all of the existing uncertainty and unhappiness.
At this point I'd prefer to get the reconstructive surgery over with, which would make it hopefully easy to assert whether or not I do indeed have a uterus or something like it, along with many questions regarding my period and so much more. Maybe after all that has concluded and the possibility of a pregnancy in some form has offered itself would I be prepared to hitch a ride on that emotional roller coaster.
I don't imagine that my life will get dull any time soon, at least.
Maya
The hints took a few months to trickle in, first in the form of an acquaintance who works in the medical profession informing me that this linea nigra can also appear when one has an excessive amount of oestrogens in one's system. This was followed a few months later by new blood tests showing that my own ovaries were producing normal levels of oestrogens on their own.
This meant that I was overdosing completely on oestrogens with the hormone therapy, resulting in the appearance of linea nigra, excessive PMS and other unpleasant symptoms. Since ceasing the hormone therapy - now about half a year ago - the linea nigra has virtually completely vanished from my abdomen and the PMS has become far more bearable, also without the general sensation of 'pressure' on my head.
In short, I was indeed not pregnant, but just going through a kind of second puberty, during which my ovaries asserted themselves by producing more estradiol than before and my body generally taking on a more regular female form.
The past months I have however become more and more acutely aware of a new pain with each period: that of a sensitive presence in my lower abdomen, located roughly where the uterus would be. Interesting here is that it's significantly more painful when I'm lying down than when sitting or standing, presumably because in the latter cases gravity and the midriff diaphragm would ensure that no other organs are pressing on this... uterus or whatever it is.
During many online discussions over the past months on sites such as Quora, the possibility of a hermaphrodite becoming pregnant has come up. For me it raises many questions. Once I was not supposed to have a vagina, but I do. I was not supposed to have ovaries, but I do. I was not supposed to have a uterus, but maybe I do as well? Even if I still do not have a usable uterus, it'd still raise the question of what I'd want to do if it turns out that my ovaries are capable of producing fertile eggs.
To be honest, they are not questions I'd really want to think about at this point. Not at this point in my life with all of the existing uncertainty and unhappiness.
At this point I'd prefer to get the reconstructive surgery over with, which would make it hopefully easy to assert whether or not I do indeed have a uterus or something like it, along with many questions regarding my period and so much more. Maybe after all that has concluded and the possibility of a pregnancy in some form has offered itself would I be prepared to hitch a ride on that emotional roller coaster.
I don't imagine that my life will get dull any time soon, at least.
Maya
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