We often like to think that each of us experiences this world in the same way. That everyone sees the same colours, hears the same sounds, and experiences each of these sensory experiences the same way. In reality these experiences couldn't be more different. From colour-blindness, reduced sense of smell due to disease or smoking, to conditions which has one for example experiencing sounds as colours, the ways in which people experience the world around them is legion.
For myself the most distinguishing feature is that I do not experience sound as sound, or smell as smell. Touch isn't touch either. Instead everything is an image, since all sensory input gets integrated into a single, coherent image. This makes it really easy to perceive the world around oneself as a coherent whole, but also means that unless I focus on, for example, a spoken conversation, I will not remember any of it because it never got visualised.
The other 'feature' which distinguishes me is sensory hypersensitivity. This translates itself into an extremely sensitive sense of sight, smell, touch, taste and hearing. I will feel pain where others merely perceive a firm grasp. I will feel as if my eyes are being burned out of my skull by the sun on a regular summer's day and absolutely need sunglasses when the sun is shining, even during winter days.
I avoid many types of food because they taste too strong or certain aspects of it are overbearing. The primary reason why I cannot drink alcohol is because I taste the ethanol so strongly that it drowns out any other flavour of the drink. This peculiar sense of taste is also why I do not drink coffee and (alcohol-free) beer.
My sense of smell is so sensitive that it has contributed massively to my intense dislike of strong irritants such as cigarette smoke and the smell of coffee and alcohol. This even when it's at concentrations nobody else in the room notices besides me. It's not something which I can ignore at that point either. I can try to live with it for a short while, or leave the room.
Basically the same thing is true for my sense of hearing. In this area it's not just about general sensitivity, but mostly about not being able to ignore any sounds, no matter how repetitive. Sounds like those of someone breathing will frustrate me. A single cough will alert me once. Repeated coughing will alert me every time until I feel like I'm going mad. Ditto for similar sounds such as the ticking heating system at my current apartment, or merely a ticking clock.
Not surprisingly, I have the same issue with repetitive movement in my field of view. Someone swinging their leg constantly, flickering shadows from people moving around, or something similar will keep alerting me, over and over. It's really quite maddening.
The feeling is that of having all of my senses turned up to 200% every time of the day. Sometimes I feel so overburdened by sensory information that it feels as if my brain wants to shut down to protect itself. At such moments I find that closing my eyes helps to reduce the sensory load significantly. Doing so in a quiet place helps infinitely more.
What I have found over the years is that the only way to really deal with sensory hypersensitivity and this inability to shut out sensory information is to simply find a place where such sensory information is largely absent. While it's possible to deal with the full barrage of information society throws at one for a limited period of time. Having this 'quiet place' is essential for survival.
I honestly cannot wait until I am freed out of this prison of noise that is my current apartment, and move into a house. Somewhere quiet. Somewhere without people. Somewhere where I control how much sensory information I receive at any point, instead of being at the mercy of my environment.
In many ways the farm where I grew up as a child was perfect for someone with this hypersensitivity condition: if there was something we did not lack there it were places where you could just stand or sit for hours and hear nothing but the wind and an occasional bird or land-bound critter.
The true bliss of silence.
Maya
Sunday, 30 October 2016
Friday, 28 October 2016
This time should be for real
Nearly twelve years ago now, I found myself on a train on my way to Amsterdam, for my first appointment at the gender team at the VUmc hospital there. I still remember how I felt during that trip: as if I was watching my own story as part of a TV documentary, with the usual commentary detailing my thoughts and hopes.
That was the first of a string of crushing disappointments. Over those nearly twelve years there were many occasions that I thought that this time I had finally found help and that it would all be over soon, only to be thwarted again. Along the way there was precious little recognition of the actual truth about my body; it was mostly about outright denial of my intersex condition and the questioning of my mental health.
I guess it did all change last year, when I got referred to my current endocrinologist, through whom I ended up in contact with Germany's transgender (and kinda also somewhat intersex) medical network. As a result I got a proper examination of my hormone levels, learned that I was overdosing on female hormones, learned that I am in fact in possession of ovaries, got a proper psychotherapist to assist me, and am now brought into contact with a surgeon who should be able to handle the reconstructive surgery.
During yesterday's appointment with my psychotherapist I learned that at least one surgeon had expressed interest in my case. Contact will be established with this surgeon in order to get my medical info including the most MRI scan to the hospital so that it can be studied, with the goal to have a consultation with the surgeon to discuss the prospect of surgery.
It will be still a tense and exciting moment to hear from this surgeon what his thoughts are on this reconstructive surgery. Whether he thinks it's possible at all, and if it is, which compromises I'd have to decide upon. I'm not expecting it to be a super-easy kind of surgery without any compromises, but at least I feel I have a good idea of which parts I would least loathe to compromise on.
Hardest to deal with would be if surgery turned out to be impossible, both from an emotional and medical point of view, considering that I still need to have the source of the extreme pains during my period examined. Without surgery everything would be harder and more difficult. For now I don't think that it's useful to think about this possibility too much.
Maybe this time everything will work out. The situation and level of support I currently have really couldn't be better, so I am hopeful that there won't be any weird or uncomfortable surprises. This time I should just get the straight answers about what my body is, what I was born with and in how far it can be shaped to its hermaphrodite self without having to resort to anything artificial.
I think that it would indeed be awesomely exciting if the surgery is possible without too many compromises. In so many ways it would be like coming home in my own body. Both to finally have that hermaphroditic body of mine restored to its full, natural state, as well as to have a somewhat easy and straight-forward way of dealing with the chronic period pains.
I dare not dream of such a moment yet, but the thought of this possibility is more than tantalizing.
Maya
That was the first of a string of crushing disappointments. Over those nearly twelve years there were many occasions that I thought that this time I had finally found help and that it would all be over soon, only to be thwarted again. Along the way there was precious little recognition of the actual truth about my body; it was mostly about outright denial of my intersex condition and the questioning of my mental health.
I guess it did all change last year, when I got referred to my current endocrinologist, through whom I ended up in contact with Germany's transgender (and kinda also somewhat intersex) medical network. As a result I got a proper examination of my hormone levels, learned that I was overdosing on female hormones, learned that I am in fact in possession of ovaries, got a proper psychotherapist to assist me, and am now brought into contact with a surgeon who should be able to handle the reconstructive surgery.
During yesterday's appointment with my psychotherapist I learned that at least one surgeon had expressed interest in my case. Contact will be established with this surgeon in order to get my medical info including the most MRI scan to the hospital so that it can be studied, with the goal to have a consultation with the surgeon to discuss the prospect of surgery.
It will be still a tense and exciting moment to hear from this surgeon what his thoughts are on this reconstructive surgery. Whether he thinks it's possible at all, and if it is, which compromises I'd have to decide upon. I'm not expecting it to be a super-easy kind of surgery without any compromises, but at least I feel I have a good idea of which parts I would least loathe to compromise on.
Hardest to deal with would be if surgery turned out to be impossible, both from an emotional and medical point of view, considering that I still need to have the source of the extreme pains during my period examined. Without surgery everything would be harder and more difficult. For now I don't think that it's useful to think about this possibility too much.
Maybe this time everything will work out. The situation and level of support I currently have really couldn't be better, so I am hopeful that there won't be any weird or uncomfortable surprises. This time I should just get the straight answers about what my body is, what I was born with and in how far it can be shaped to its hermaphrodite self without having to resort to anything artificial.
I think that it would indeed be awesomely exciting if the surgery is possible without too many compromises. In so many ways it would be like coming home in my own body. Both to finally have that hermaphroditic body of mine restored to its full, natural state, as well as to have a somewhat easy and straight-forward way of dealing with the chronic period pains.
I dare not dream of such a moment yet, but the thought of this possibility is more than tantalizing.
Maya
Wednesday, 26 October 2016
End of the road, with shades of a happy ending
It was early 2005 when I embarked on my quest to answer the simple question of just what the heck my body is about. Now, on the even of the 12th anniversary of this event I can look back on twelve years filled with events which have both destroyed and on occasion rekindled my trust in my fellow humans. Twelve years of experiences which no person should ever have to go through.
On this moment I can also look ahead to what should be the end of this quest, of this endless road as I have often described it. Regardless of the outcome as I head into consultations with surgeons, I will get my answers and that will be the end of it. Also hopefully the beginning of what should be my actual, real life. The real me.
The past week the two doctors and psychotherapist who handle my case at this point have been at a congress, getting into contact with people who can hopefully help me with this last part of my medical journey: answering the question of whether a reconstructive surgery of my female side is possible, as in reattaching the existing vagina to the perineum, accompanied by the creation of labia.
I hope it is possible, because it'd make my body finally feel complete, and it would enable extremely easy examinations of the severe monthly pains which I experience. Many medical and psychological reasons to hope for this outcome at least.
Yet even if that's not possible, at least it will be all pertinent questions answered. There's still the question of what my genetic make-up is exactly - whether I'm truly an XX/XY chimera - but that will not change who or what I am, merely satisfy some trivia. My body would still be complete to me and there'd be nothing else to fight for, strive for or otherwise put far too much energy into, aside my duty of ensuring that no-one else will have to go through an experience like mine.
One thing which I find myself struggling with is that I am now being helped by doctors exactly the way I had imagined it would go, twelve years ago. It's all so easy and everyone is so friendly and helpful. It makes me wonder why the past decade had to happen at all. I guess that's a question with which I will have to find peace somehow.
On the bright side, this year saw its share of miracles, such as discovering that I do in fact have ovaries and with these suddenly kicking into high gear as they started producing sufficient hormones on their own so that I no longer have to take any kind of hormone therapy. In many ways my body now feels like that of a regular woman, although I still feel primarily a hermaphrodite. All of that is fine, and I hope to explore that feeling far more after any surgery.
Tomorrow I will get an update from my psychotherapist on their findings at the congress and any further steps to take. I pray that the findings so far were positive and that the entire matter can be resolved in a matter of months without too much additional stress, worrying and compromises.
This is the end of the road. Everything after this is new, unknown territory to explore.
Maya
On this moment I can also look ahead to what should be the end of this quest, of this endless road as I have often described it. Regardless of the outcome as I head into consultations with surgeons, I will get my answers and that will be the end of it. Also hopefully the beginning of what should be my actual, real life. The real me.
The past week the two doctors and psychotherapist who handle my case at this point have been at a congress, getting into contact with people who can hopefully help me with this last part of my medical journey: answering the question of whether a reconstructive surgery of my female side is possible, as in reattaching the existing vagina to the perineum, accompanied by the creation of labia.
I hope it is possible, because it'd make my body finally feel complete, and it would enable extremely easy examinations of the severe monthly pains which I experience. Many medical and psychological reasons to hope for this outcome at least.
Yet even if that's not possible, at least it will be all pertinent questions answered. There's still the question of what my genetic make-up is exactly - whether I'm truly an XX/XY chimera - but that will not change who or what I am, merely satisfy some trivia. My body would still be complete to me and there'd be nothing else to fight for, strive for or otherwise put far too much energy into, aside my duty of ensuring that no-one else will have to go through an experience like mine.
One thing which I find myself struggling with is that I am now being helped by doctors exactly the way I had imagined it would go, twelve years ago. It's all so easy and everyone is so friendly and helpful. It makes me wonder why the past decade had to happen at all. I guess that's a question with which I will have to find peace somehow.
On the bright side, this year saw its share of miracles, such as discovering that I do in fact have ovaries and with these suddenly kicking into high gear as they started producing sufficient hormones on their own so that I no longer have to take any kind of hormone therapy. In many ways my body now feels like that of a regular woman, although I still feel primarily a hermaphrodite. All of that is fine, and I hope to explore that feeling far more after any surgery.
Tomorrow I will get an update from my psychotherapist on their findings at the congress and any further steps to take. I pray that the findings so far were positive and that the entire matter can be resolved in a matter of months without too much additional stress, worrying and compromises.
This is the end of the road. Everything after this is new, unknown territory to explore.
Maya
Saturday, 22 October 2016
Just want to know that everything is okay
The past weeks I found myself struggling with exhaustion, lack of and generally poor sleep, severe nightmares and similar, all of which made me wonder what was going on to make me feel so terrible. It felt like burn-out, depression and similar non-fun stuff, but I couldn't quite put my finger on the cause. That is, until yesterday.
All too often when something 'snaps' emotionally it's not due to a singular event, but the slow, gradual build-up of emotional stresses. Rarely is it even from a singular source, though they can be related. Looking back on the past month or so I could easily identify a number of sources.
Pregnancies, relationships and marriages. Three words which evoke primarily negative feelings and stir negative memories for me. Also three topics which played a big role at work lately.
Pregnancy? Never been an option for me, no matter which way. Painful reminder of how... different my body is.
Relationships, marriages and the like? Heterosexual relationships still make me feel ill at the mere thought. Relationships and marriages are an excellent reminder of how anti-social and secluded I have become over the years that I may as well not bother to fix this any more.
Then the million dollar word: 'home'. As in a place where you feel safe and comfortable. Something which I haven't had in literally over a decade. Something which I do not have currently and do not expect to have until next year at the earliest. If I can find the courage to expose myself to the potential to get hurt incredibly again. This is also the reason why I will never rent a place again.
I just want to reach a point where I do not feel threatened any more. A point where nobody is trying to scam me, where nobody threatens me even when I have done nothing wrong, where I feel that my skills are welcome, and maybe even where I can feel that I can trust people around me.
At this point I am unhappy, I feel broken and a misfit. Not suicidal or anything of the sort, but just very sad and somewhat depressed that life has to be so incredibly hard just for some when it would be so easy to make life easy for everyone.
Next week I expect to hear more about the potential reconstructive surgery, a surgery which should hopefully conclude well over a decade worth of searching for medical help with my intersex condition. A condition which has taken me well outside the bounds of 'normal society' and which unfortunately has forced me to confront aspects of it which are simply indescribably revolting.
Part of what I came to terms with yesterday is that the intense feeling of alienation I deal with on a daily basis is simply because that's the way things are for people like me: we are not part of human society like others. We don't raise families or have happy, care-free relationships. We don't get married or fuss about what clothes to wear to a party.
We deal with those parts of society everyone else chooses to simply ignore. We have to carve out our own lives, in our own way without an easy template to follow. This is also an incredibly tough and gruelling path to follow, yet we do not follow it because of some expected gain. We do it because we have no other choice.
This all makes it so much more important to reach those points where one can just sit up and realise that everything is okay. That one has an actual place one can happily call 'home', funds to live one's life and nothing major to worry about. To people like us such moments are more precious than anything else in this universe, simply because they are so incredibly rare.
Maya
All too often when something 'snaps' emotionally it's not due to a singular event, but the slow, gradual build-up of emotional stresses. Rarely is it even from a singular source, though they can be related. Looking back on the past month or so I could easily identify a number of sources.
Pregnancies, relationships and marriages. Three words which evoke primarily negative feelings and stir negative memories for me. Also three topics which played a big role at work lately.
Pregnancy? Never been an option for me, no matter which way. Painful reminder of how... different my body is.
Relationships, marriages and the like? Heterosexual relationships still make me feel ill at the mere thought. Relationships and marriages are an excellent reminder of how anti-social and secluded I have become over the years that I may as well not bother to fix this any more.
Then the million dollar word: 'home'. As in a place where you feel safe and comfortable. Something which I haven't had in literally over a decade. Something which I do not have currently and do not expect to have until next year at the earliest. If I can find the courage to expose myself to the potential to get hurt incredibly again. This is also the reason why I will never rent a place again.
I just want to reach a point where I do not feel threatened any more. A point where nobody is trying to scam me, where nobody threatens me even when I have done nothing wrong, where I feel that my skills are welcome, and maybe even where I can feel that I can trust people around me.
At this point I am unhappy, I feel broken and a misfit. Not suicidal or anything of the sort, but just very sad and somewhat depressed that life has to be so incredibly hard just for some when it would be so easy to make life easy for everyone.
Next week I expect to hear more about the potential reconstructive surgery, a surgery which should hopefully conclude well over a decade worth of searching for medical help with my intersex condition. A condition which has taken me well outside the bounds of 'normal society' and which unfortunately has forced me to confront aspects of it which are simply indescribably revolting.
Part of what I came to terms with yesterday is that the intense feeling of alienation I deal with on a daily basis is simply because that's the way things are for people like me: we are not part of human society like others. We don't raise families or have happy, care-free relationships. We don't get married or fuss about what clothes to wear to a party.
We deal with those parts of society everyone else chooses to simply ignore. We have to carve out our own lives, in our own way without an easy template to follow. This is also an incredibly tough and gruelling path to follow, yet we do not follow it because of some expected gain. We do it because we have no other choice.
This all makes it so much more important to reach those points where one can just sit up and realise that everything is okay. That one has an actual place one can happily call 'home', funds to live one's life and nothing major to worry about. To people like us such moments are more precious than anything else in this universe, simply because they are so incredibly rare.
Maya
Sunday, 16 October 2016
Entertainment isn't what it used to be
As a child I grew up with the best sources of entertainment the 1980s and early 1990s could offer, as well as the extensive collection of mostly music from my parents dating back to the 1960s. This meant vinyl, compact cassette tapes and VHS tapes. To play video games on the Commodore 64 we had cassette tapes as well, and a single game on a cartridge.
With our first PC we moved on to 3.5" floppy disks, and gaming was done on a Super Nintendo (SNES) with cartridges. Like moving from vinyl to cassettes, loading programs from a floppy instead of painstakingly waiting for the counter on the tape drive to reach the right count made things a lot easier. Ditto for just shoving a cartridge into a SNES, turning it on and starting playing.
Moving to audio CDs made things even easier for listening to music, removing all the fun details of vinyls (dust, skipping audio, flipping records, etc.) and cassettes (sticky rollers, switching between side A and B, audio quality, etc.) and making it almost boring to listen to music.
Move forward a few more years into the early 2000s, and the VHS tapes have been replaced with DVDs. Audio is still largely CDs, but MP3s and other digital formats are beginning to take its lunch money. As PCs and the internet become faster, so too does the exchanging of music, movies and games via sharing networks increase, regardless of its legal status. There's just something to be said for having access to virtually all popular and many rare pieces of content for virtually free.
Not having a significant source of income over the past years I admittedly didn't do a lot of content buying, so I only experienced the next batch of changes in media formats from the sidelines, including the demise of HD-DVD and the rise of Blu-Ray. This experience void ended when I decided to purchase my very first Blu-Ray movie, receiving it earlier this week. That's when things went south.
My experience over the past decades has been that new formats make life easier, removing issues like degrading audio quality with playback, stuck and broken tape, flipping sides, rewinding after playback or arcane knowledge of C64 BASIC just in order to load content from a floppy disk. DVDs had the questionable encryption thing (CSS), but after it was revealed that it was extremely easy to crack people soon forgot that DVDs even featured encryption.
This in contrast with Blu-Ray movies. Its version of CSS (AACS) has not been cracked yet. This means that without the proper decryption keys the bits on the disc are useless. Worse, to get those decryption keys you need to have an official license from the BluRay organisation ($$), or pay someone who has made a Blu-Ray player (hardware or software-based) which can retrieve the appropriate keys.
All of this led to me putting my new Blu-Ray movie into the Blu-Ray player of my PC and then spending nearly an hour finding out that neither Windows Media Player, nor MPC-HC, nor VLC (even with libaacs and current key database) could decrypt this particular disc. Without shelling out more money (more than the movie disc had cost me), it was clear that I wasn't going to be able to watch this movie.
Except for one detail which led to me watching the movie after all: browsing to a certain popular site, searching for the movie title, clicking two links and waiting a number of minutes until the movie had finished downloading. Open it in MPC-HC and then I was watching the movie, same quality as if I was watching it from the disc which was lying uselessly on my desk.
I'm not sure I see the point of buying movies on Blu-Ray discs when I'm at the mercy of those holding the decryption keys. I'm not sure I see the point of paying a monthly fee for a streaming service either, when they're unlikely to have the content I want to see or listen to, not to mention not always having internet available.
All I want is to buy content on physical media which is not burdened by encryption and which I actually own, not merely license or have access to as long as I pay the monthly fee. This is sadly similar to what happened to video games.
Back in 1998 I bought Legend of Zelda: Ocarina of Time for the Nintendo 64. It cost me a smack of money, along with the console itself, but I knew that after plunking down all of that money, the game console was mine, and the game cartridge which I was holding was the entire game, for now and all eternity.
Now that I'm mostly buying games from online services like Steam and Good Old Games (GOG), the concept of 'ownership' is a bit more nebulous. I know that for the cartridge games I buy for my Nintendo 3DS portable console I can simply claim that they are 'mine', but if any of those online services were to vanish tomorrow, what would you be left with? With GOG you at least have the lack of encryption meaning that you can just copy the game installer to a safe place, but with Steam?
Then there's the point of games with online features, or which are fully online-based. They turn into useless bits as soon as the company maintaining the servers turns them off. Even something as widely popular as World of Warcraft, but also for online multiplayer features, downloadable content and so on. If someone were to want to play a SNES game twenty years from now, the game cartridge should still just work in 2036 and functioning hardware can be found or assembled as well.
Some days I depress myself with the thought of just how many of today's games will be unplayable ten, or even five years from now. In a time when even buying a game disc for a Playstation 4 or XBone doesn't guarantee that the title will work without massive patches (downloaded from a server which won't exist any more in ten years), it's questionable in how far it makes sense to even buy game discs any more.
Others have said this before, and I find that I can merely agree with them; if we aren't careful, we may end up with an entertainment 'dark ages', with movies and music locked behind unbreakable encryption and games too fragmented or too reliant on long since vanished online services to be even worth a look any more.
All of this is a fairly depressing thought, regardless of whether one feels that most of this content is truly worth saving. It means that we're moving backwards in some ways, not forwards.
Maya
With our first PC we moved on to 3.5" floppy disks, and gaming was done on a Super Nintendo (SNES) with cartridges. Like moving from vinyl to cassettes, loading programs from a floppy instead of painstakingly waiting for the counter on the tape drive to reach the right count made things a lot easier. Ditto for just shoving a cartridge into a SNES, turning it on and starting playing.
Moving to audio CDs made things even easier for listening to music, removing all the fun details of vinyls (dust, skipping audio, flipping records, etc.) and cassettes (sticky rollers, switching between side A and B, audio quality, etc.) and making it almost boring to listen to music.
Move forward a few more years into the early 2000s, and the VHS tapes have been replaced with DVDs. Audio is still largely CDs, but MP3s and other digital formats are beginning to take its lunch money. As PCs and the internet become faster, so too does the exchanging of music, movies and games via sharing networks increase, regardless of its legal status. There's just something to be said for having access to virtually all popular and many rare pieces of content for virtually free.
Not having a significant source of income over the past years I admittedly didn't do a lot of content buying, so I only experienced the next batch of changes in media formats from the sidelines, including the demise of HD-DVD and the rise of Blu-Ray. This experience void ended when I decided to purchase my very first Blu-Ray movie, receiving it earlier this week. That's when things went south.
My experience over the past decades has been that new formats make life easier, removing issues like degrading audio quality with playback, stuck and broken tape, flipping sides, rewinding after playback or arcane knowledge of C64 BASIC just in order to load content from a floppy disk. DVDs had the questionable encryption thing (CSS), but after it was revealed that it was extremely easy to crack people soon forgot that DVDs even featured encryption.
This in contrast with Blu-Ray movies. Its version of CSS (AACS) has not been cracked yet. This means that without the proper decryption keys the bits on the disc are useless. Worse, to get those decryption keys you need to have an official license from the BluRay organisation ($$), or pay someone who has made a Blu-Ray player (hardware or software-based) which can retrieve the appropriate keys.
All of this led to me putting my new Blu-Ray movie into the Blu-Ray player of my PC and then spending nearly an hour finding out that neither Windows Media Player, nor MPC-HC, nor VLC (even with libaacs and current key database) could decrypt this particular disc. Without shelling out more money (more than the movie disc had cost me), it was clear that I wasn't going to be able to watch this movie.
Except for one detail which led to me watching the movie after all: browsing to a certain popular site, searching for the movie title, clicking two links and waiting a number of minutes until the movie had finished downloading. Open it in MPC-HC and then I was watching the movie, same quality as if I was watching it from the disc which was lying uselessly on my desk.
I'm not sure I see the point of buying movies on Blu-Ray discs when I'm at the mercy of those holding the decryption keys. I'm not sure I see the point of paying a monthly fee for a streaming service either, when they're unlikely to have the content I want to see or listen to, not to mention not always having internet available.
All I want is to buy content on physical media which is not burdened by encryption and which I actually own, not merely license or have access to as long as I pay the monthly fee. This is sadly similar to what happened to video games.
Back in 1998 I bought Legend of Zelda: Ocarina of Time for the Nintendo 64. It cost me a smack of money, along with the console itself, but I knew that after plunking down all of that money, the game console was mine, and the game cartridge which I was holding was the entire game, for now and all eternity.
Now that I'm mostly buying games from online services like Steam and Good Old Games (GOG), the concept of 'ownership' is a bit more nebulous. I know that for the cartridge games I buy for my Nintendo 3DS portable console I can simply claim that they are 'mine', but if any of those online services were to vanish tomorrow, what would you be left with? With GOG you at least have the lack of encryption meaning that you can just copy the game installer to a safe place, but with Steam?
Then there's the point of games with online features, or which are fully online-based. They turn into useless bits as soon as the company maintaining the servers turns them off. Even something as widely popular as World of Warcraft, but also for online multiplayer features, downloadable content and so on. If someone were to want to play a SNES game twenty years from now, the game cartridge should still just work in 2036 and functioning hardware can be found or assembled as well.
Some days I depress myself with the thought of just how many of today's games will be unplayable ten, or even five years from now. In a time when even buying a game disc for a Playstation 4 or XBone doesn't guarantee that the title will work without massive patches (downloaded from a server which won't exist any more in ten years), it's questionable in how far it makes sense to even buy game discs any more.
Others have said this before, and I find that I can merely agree with them; if we aren't careful, we may end up with an entertainment 'dark ages', with movies and music locked behind unbreakable encryption and games too fragmented or too reliant on long since vanished online services to be even worth a look any more.
All of this is a fairly depressing thought, regardless of whether one feels that most of this content is truly worth saving. It means that we're moving backwards in some ways, not forwards.
Maya
Saturday, 15 October 2016
The meme we call religion
Every now and then I get asked whether I am religious, or what my views are on religion, often in light of my experiences the past decades.
On the first point I can be clear: I wasn't raised in a religious environment, nor did I somehow 'discover' religion along the way. At no point in the past decades did religion play any significant role, except for the negativity and rejection I encountered by Christians, both doctors and regular people.
To me religion is one of those oddities about humans, revealing a tendency to abandon independence, control and critical thought in exchange for blind faith, pointless rituals and a tendency to inflict horrible suffering upon others in the belief that one is doing the right things. Based on neurological evidence found during a number of scientific studies one can surmise that it does involve a type of neurological defect which may have its roots in human evolution.
While religion played no major role for me, what I did gain over the years was a strong belief in humanism. The notion that basically everything which happens to us on a daily basis is due to the actions of ourselves and others. None of what happened to me over the past decades was due to anything but the actions of others and to a limited extent my own, for example when I decided to take my own life, a few years ago now. Even that experience just made it more clear to me that it's just us humans.
All that I have seen were other humans. All that I experienced were humans being cruel, ignorant, uncaring, and sometimes gentle and understanding. I cannot conceivably define religion for this reason as being about something super-natural, spiritual or anything of the type. It's overwhelmingly shown itself as a purely human thing; contrived by humans and kept going by humans. There's no man behind the curtain, it's just... us.
To me religion is more of a Lovecraftian scenario. It's an Abyss which once one stares into it, it'll gazes back into one's soul, converting and twisting all of one's hopes, dreams and fears into an alternate reality inspired by the most primal and defective parts of our minds. Brought into a group, it begins to lead its own life, reducing individuals to merely insignificant components of a larger whole. It's essentially part of meme theory, whereby ideas and concepts can literally be treated as a type of virus, infecting others and forcing them to further spread the virus.
The past decade that I have fought to find myself and figure out the world around me. This process involved scientific and medical facts, as well as a very dark trip into the human psyche. I am still trying to figure out why it is that I was treated the way I was by doctors and psychologists, why scientific and medical facts were not paramount in their actions and decisions, but... something else instead.
It is this irrationality which frightens me the most in other humans. Instead of behaving rationally and displaying a preference for order, harmony and general happiness as would be expected, their focus instead seems to be inwards, involving the harbouring of some internal sense of misery and unhappiness. They then seem to inflict negative actions upon others for no perceivable gain, but to maybe temporarily alleviate their internal darkness.
Others seek to bury this feeling of unhappiness in the embracing of ignorance, ignoring their mortality, the suffering of others and the role they could be playing in the world.
Even as a child I felt burdened by the weight of being just a mortal existence amidst the sheer enormity of the universe, but learned to deal with it by fully embracing that which makes us truly human: science and the countless ways it can make life better for all of us. Thus, in effect, I negated the possibility of me ever contracting religion or similar by choosing to embrace reality and all the good that it can bring. All the changes that it can bring.
Religion does not change. It just is. Each instance is as firmly stuck in the past as the holy work on which it claims to be based. Science, however, is the book which we humans are still writing - and rewriting - every day, based on the small glimpses of the immense universe we strive to capture.
Science got me where I am today. Science allowed me to learn the things I now know about my body. Science is the reason why I am alive today. Science is what I will keep dedicating my life to, today and tomorrow, and every day that I will have after that.
For I am human.
Maya
On the first point I can be clear: I wasn't raised in a religious environment, nor did I somehow 'discover' religion along the way. At no point in the past decades did religion play any significant role, except for the negativity and rejection I encountered by Christians, both doctors and regular people.
To me religion is one of those oddities about humans, revealing a tendency to abandon independence, control and critical thought in exchange for blind faith, pointless rituals and a tendency to inflict horrible suffering upon others in the belief that one is doing the right things. Based on neurological evidence found during a number of scientific studies one can surmise that it does involve a type of neurological defect which may have its roots in human evolution.
While religion played no major role for me, what I did gain over the years was a strong belief in humanism. The notion that basically everything which happens to us on a daily basis is due to the actions of ourselves and others. None of what happened to me over the past decades was due to anything but the actions of others and to a limited extent my own, for example when I decided to take my own life, a few years ago now. Even that experience just made it more clear to me that it's just us humans.
All that I have seen were other humans. All that I experienced were humans being cruel, ignorant, uncaring, and sometimes gentle and understanding. I cannot conceivably define religion for this reason as being about something super-natural, spiritual or anything of the type. It's overwhelmingly shown itself as a purely human thing; contrived by humans and kept going by humans. There's no man behind the curtain, it's just... us.
To me religion is more of a Lovecraftian scenario. It's an Abyss which once one stares into it, it'll gazes back into one's soul, converting and twisting all of one's hopes, dreams and fears into an alternate reality inspired by the most primal and defective parts of our minds. Brought into a group, it begins to lead its own life, reducing individuals to merely insignificant components of a larger whole. It's essentially part of meme theory, whereby ideas and concepts can literally be treated as a type of virus, infecting others and forcing them to further spread the virus.
The past decade that I have fought to find myself and figure out the world around me. This process involved scientific and medical facts, as well as a very dark trip into the human psyche. I am still trying to figure out why it is that I was treated the way I was by doctors and psychologists, why scientific and medical facts were not paramount in their actions and decisions, but... something else instead.
It is this irrationality which frightens me the most in other humans. Instead of behaving rationally and displaying a preference for order, harmony and general happiness as would be expected, their focus instead seems to be inwards, involving the harbouring of some internal sense of misery and unhappiness. They then seem to inflict negative actions upon others for no perceivable gain, but to maybe temporarily alleviate their internal darkness.
Others seek to bury this feeling of unhappiness in the embracing of ignorance, ignoring their mortality, the suffering of others and the role they could be playing in the world.
Even as a child I felt burdened by the weight of being just a mortal existence amidst the sheer enormity of the universe, but learned to deal with it by fully embracing that which makes us truly human: science and the countless ways it can make life better for all of us. Thus, in effect, I negated the possibility of me ever contracting religion or similar by choosing to embrace reality and all the good that it can bring. All the changes that it can bring.
Religion does not change. It just is. Each instance is as firmly stuck in the past as the holy work on which it claims to be based. Science, however, is the book which we humans are still writing - and rewriting - every day, based on the small glimpses of the immense universe we strive to capture.
Science got me where I am today. Science allowed me to learn the things I now know about my body. Science is the reason why I am alive today. Science is what I will keep dedicating my life to, today and tomorrow, and every day that I will have after that.
For I am human.
Maya
Monday, 10 October 2016
Chronic pain and the promise of surgery
Later this month I should hopefully learn what my chances are of getting this reconstructive surgery. During this surgery the existing vagina should get joined up with the perineum and labia created from the empty scrotum's skin. Unlike what one might assume, my main hope with this surgery is not to appear and function more like a regular female. My main hope is that it may reduce the chronic pains which I suffer from.
Since I was eleven years old I have had regular periods, for the longest time merely experiencing it as weird pains and discomfort which I sought to dismiss and ignore as best as I could. I was supposed to be a guy after all, so it had to be just common guy things like an upset stomach and skin rashes or something. That lasted until I learned about my intersex condition.
Especially after I went on hormone therapy my body began to change, and the period symptoms began to change along with it. I began to experience more serious cramps, as well as sore hips and painful lower back, and finally excruciating pains at the end of the menstrual phase. Pains which persisted even after I went off hormone therapy as my body was producing sufficient female hormones on its own. Pains which are bad enough that I have to take the anti-conception pill to lessen the symptoms.
While the ovulation phase of my periods is sufficiently painful - with a sore right side and hips as well as abdominal discomfort - the fun really starts with the menstrual phase. This one features severe abdominal cramps, headaches, pain and discomfort in the vaginal area and ultimately what feels like an inflammation in this latter area.
What this means is that no matter whether I'm sitting, walking, standing, or lying down, it'll hurt or cause discomfort. Together with the menstrual phase this lasts between one and two weeks. The absolute worst part of it has to be that visiting the toilet becomes painful to excruciating. On some days, trying to defecate feels as if shards of glass are rending one's lower abdomen into shreds, resulting in checking for traces of blood, or making sure that no streams of blood are running down one's legs.
A lot of my current life is about living with pain. Yet at least one knows the physical pain will subsides again and I usually get about one relatively pain-free week every month. Worse is not knowing what is happening inside of my abdomen and how bad it may get. Or whether I'm risking sepsis, an increased risk of cancer or merely suffer internal scarring every month.
With this reconstructive surgery I may finally get the answers I seek. The about eight sets of abdominal MRI scans which were made over the years cannot answer the questions I have. Being able to physically examine the area in question could answer so many questions, and hopefully lead to treatment options. Better yet, it may even be a partial fix in itself, if the pain after the menstrual phase is due to menstrual fluid irritating the vaginal lining or other tissues before my body can reabsorb it.
I really hope for good news on the surgery and that I may soon find out in which ways it will improve my life.
Maya
Since I was eleven years old I have had regular periods, for the longest time merely experiencing it as weird pains and discomfort which I sought to dismiss and ignore as best as I could. I was supposed to be a guy after all, so it had to be just common guy things like an upset stomach and skin rashes or something. That lasted until I learned about my intersex condition.
Especially after I went on hormone therapy my body began to change, and the period symptoms began to change along with it. I began to experience more serious cramps, as well as sore hips and painful lower back, and finally excruciating pains at the end of the menstrual phase. Pains which persisted even after I went off hormone therapy as my body was producing sufficient female hormones on its own. Pains which are bad enough that I have to take the anti-conception pill to lessen the symptoms.
While the ovulation phase of my periods is sufficiently painful - with a sore right side and hips as well as abdominal discomfort - the fun really starts with the menstrual phase. This one features severe abdominal cramps, headaches, pain and discomfort in the vaginal area and ultimately what feels like an inflammation in this latter area.
What this means is that no matter whether I'm sitting, walking, standing, or lying down, it'll hurt or cause discomfort. Together with the menstrual phase this lasts between one and two weeks. The absolute worst part of it has to be that visiting the toilet becomes painful to excruciating. On some days, trying to defecate feels as if shards of glass are rending one's lower abdomen into shreds, resulting in checking for traces of blood, or making sure that no streams of blood are running down one's legs.
A lot of my current life is about living with pain. Yet at least one knows the physical pain will subsides again and I usually get about one relatively pain-free week every month. Worse is not knowing what is happening inside of my abdomen and how bad it may get. Or whether I'm risking sepsis, an increased risk of cancer or merely suffer internal scarring every month.
With this reconstructive surgery I may finally get the answers I seek. The about eight sets of abdominal MRI scans which were made over the years cannot answer the questions I have. Being able to physically examine the area in question could answer so many questions, and hopefully lead to treatment options. Better yet, it may even be a partial fix in itself, if the pain after the menstrual phase is due to menstrual fluid irritating the vaginal lining or other tissues before my body can reabsorb it.
I really hope for good news on the surgery and that I may soon find out in which ways it will improve my life.
Maya
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