Kvothe

Feb. 26th, 2017 09:25 am
zetasyanthis: (Default)
CW: Mental damage, mentions of suicide.
 
It's been a while since I've written a journal, and it hasn't really been much fun. Some good things have happened, some bad ones, and I'm pretty sure I've been hurting myself by not working some of this out on paper. This is my attempt to deal with some of that.
 
You're probably wondering about the title of the journal, and I should probably try to make some sense of that.
 
I recently read a couple books that have kicked me a bit out of sorts. The Name of the Wind, The Slow Regard of Silent Things, and The Wise Man's Fear devastated me in a way I never expected. There's... a lot of pain in those books, and there's a lot of pain in my heart, and I don't know how to deal with it either. There are a lot of days where I just want to curl up and die.
 
I want to cry, and shake, and cry and hide... to disappear completely. I want my mind to stop grinding against itself like shattered glass, screaming breaking noises, and screeching noises, and screaming and screaming and screaming until I finally die. I fight insanity *every* *single* *day*, the loss of self and heart and home that seems to be ever stronger. I hold death itself at bay with fear and force of will, and fear the loss of myself far, far more than that of my body. And yet, I know what the grip of insanity feels like, and it would kill me in an instant.
 
I just want to stop being ripped apart inside. I want to be able to function as a normal human being. I want safety, and sanity, and home and love and quiet. I want to be able to listen to music without it having to be a shield against my fear. I want to be able to feel my cat's love, and my girlfriend's, and that of all those who try to tell me they care. I want to stop being broken inside, and I want to cry. >.<

Nightmare

Dec. 8th, 2016 12:25 am
zetasyanthis: (Default)
I promised myself I'd write this today, and having failed to do so so far, I just remembered right before going to bed.

I had a hell of a nightmare this morning, and I think I need to write it down.

I can't remember exactly why, but I apparently travelled home to may parent's house for the holidays, staying in my old room, or maybe my brother's. My parents were not open-minded. The whole situation was *extremely* tense, with awkward non-acknowledgements, tense dinner situations, and everything just as miserable as I remember it. I was absolutely terrified the entire time, freaking out about why I'd come, why I'd stayed there of all places, and what I could do to escape. I'd do anything to escape.

I remember my father raging, his hands trembling as he forcefully ate, as though the steak in front of him was the cause of his offense... as though if he buried himself in it enough, I wouldn't be there anymore. I remember that fear. That same scene played out the night I told him, the night I ran, virtually in terror, from his car back to my room. I remember my heart pounding as I slammed the deadbolt, his imagined footsteps in my heart. I remember crying. >.<

If you ever have any children of your own, please... please love them. >.< And be gentle in that love. >.<
zetasyanthis: (Default)
I just wrote and sent this email to the electors, with the subject "I'm scared too. >.<". 

I hope this letter finds you well, and that your days have been happier and less stressful than mine.

My name is Zeta Syanthis, and I am writing to you in the hope that you will read my story. I'm writing because I'm scared, and because my friends are being hurt. And because I know it's probably only a matter of time before I, myself, am.

Ever since President-Elect Donald Trump won the electoral college on November 8th, hate crimes against minorities have spiked to an unbelievable degree. I myself am a transgender citizen living in California, though I've only been here for two short years. (I moved here hoping against hope that I would be safe. >.<) Originally from Illinois, I went to school in Terre Haute, Indiana (downstate) and then lived in Arizona for almost 5 years, working as a cleared defense contractor during that time. I have no illusions about the threats we face, or about the need for a strong hand in government, but for the first time in my life I no longer feel safe in my own home. I no longer know if those I wish to serve want me here, or if those that do outnumber those who wish me dead. I hope you are one of the former. >.<

I do not know if you have ever felt as I do, whether here or abroad, but I can tell you it is a deep and terrible feeling, one that scarcely lets me get up each day. It as though a spike has been driven through my heart and chained to some dark place, and I do not know how to remove it. >.<

Already, we have lost folks, to that same depression which I battle daily. We have lost 9 that I know of to suicide, kind and gentle folks who lost hope upon seeing their hoped-for futures snatched away. Others are being killed, or chased down with hatchets, while all the while the KKK celebrates day after day. In our neighborhoods, pride flags are being burned while still attached to houses, black churches are being torched, and women's cars vandalized for even looking as though they might be Muslim. And that's to say nothing of the hateful words and symbols painted and etched into our lives.

I know you alone cannot stop this. And I do not put that responsibility at your feet. How could I? But I am asking, as one human to another, "*Please* do not do this to us." We have shed far too many tears already, and my heart cannot bear many more. >.<

Link summary:
http://www.wsoctv.com/news/local/transgender-woman-chased-attacked-with-hatchet-at-charlotte-park/467181395
http://www.washingtonblade.com/2016/06/16/rainbow-flag-burned-outside-adams-morgan-restaurant/
http://www.democratandchronicle.com/story/news/2016/11/10/gay-pride-rainbow-flags-burned/93583280/
http://sanfrancisco.cbslocal.com/2016/11/16/hiker-targeted-with-car-vandalism-racist-note-over-head-scarf/
http://www.mercurynews.com/2016/10/14/leaked-video-shows-santa-clara-students-drawing-swastika-with-blood/
http://www.mercurynews.com/2016/09/21/swastikas-hateful-language-discovered-at-sjsu-residence-halls/
https://twitter.com/trashhalo/status/742386487937892353/photo/1
http://abc7news.com/news/church-womans-car-vandalized-with-swastikas-in-south-bay/1610855/
http://www.cnn.com/2016/11/02/us/mississippi-black-church-vandalized-vote-trump/
zetasyanthis: (Default)
A warning, right up front. This one's going to hurt. [TW: anxiety, fear, mentions of suicide]

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I had lunch with a friend of mine earlier today, and in so doing, finally figured out how to describe what being afraid is like. Fear is a constant. It doesn't end, doesn't take days off, and rips apart everything it touches. It forces your heart to pound, even when it shouldn't, and spikes your adrenaline over and over until all you can do is collapse.

To be afraid all the time is to lose track of time and space. It's to lose track of emotion, of safety, of everything that isn't within the whirling storm. It's to lose the branch you're holding on to, over and over again. It's to be swept away, screaming, powerless to stop your flight.

Hiding from it, pushing it away... doesn't really fix it. It makes you think you have, but it lies. It'll lie right up until you kill yourself, not even sure why you're holding the blade, and it won't care a lick.

To be afraid all the time is to face that, daily... the voice that cries inside. The one that shakes until she can't, wishing for the end. Sometimes that's all I can do... shake until I sleep, exhaustion taking me into sweat-drenched nightmares, wishing I could weep.

My therapist called me brave last week, brave for fighting this. I told her that I have no choice. I just wish I could sleep. >.<
zetasyanthis: (Default)
As much as I'd rather do anything but, I need to write this out, so here goes. >.<

I've been really depressed the last few days. Even beyond that, I've been really out of it the last few weeks. Some of that has been medication-related (insomnia, now dealt with), some of it's been family-related, and some has been all the horrible stuff in the news. A lot of it ties into my last journal, too. >.< Deep therapy has played its part too, unfortunately, as though it's really important, it still has smashed me in terms of mental energy. >.<

So... my sister called me a week or two ago. I still haven't talked to my parents, and she's a bit upset with me. Note that she's not upset because I'm not talking to them, but because I haven't at least let them know what my decision is about them being in my life. I think she's right about that, as much as I wish she wasn't... and as much as I know many of you may disagree. I don't know how to do it though, because I'm fairly sure that I'd do far more damage trying to explain what they'd done in the inevitable "Why?". I don't respect them, don't love them, and wish like hell I could program them right out of my brain. >.< They have caused immeasurable damage that I have no idea how to recover from, and I probably would have been better off with *wolves*. >.<

I want them gone, I want to be healed, and I want the family I wish I had. And though I am making progress on all three, today it doesn't feel like it. >.< It hasn't felt like it for weeks. >.<

One thing that I just want to cry endlessly about is that I don't even know how to have a relationship with my sisters, even. Both are close to my parents, and I have no idea what cutting them off would do. I don't think it'd be intentional, but I feel like if I cut off my parents that I will inevitably lose them too. And honestly, I don't even know how to maintain a relationship with them without being constantly reminded of my parents, which I may not be able to handle anyways. >.<

I just want a safe and deep connection with my family, and I can't. >.< I'm fucking terrified. >.<

My therapist and I have been working on this stuff for weeks, really fighting it every session, trying to work on resources and honest-to-goodness healing, but every unlocked memory hurts more than the last. The part of me that's hiding even from myself is really, horribly, shattered, and I wish like hell she wasn't. That poor girl never had a fucking chance and never even knew it. >.<

She's still hiding in the stairwell, a place I used to go where no one would think to find me. Whether the back stairs that no one thought to check, or the unfinished wooden boards of the basement, it doesn't matter. She's still sitting there in the dark. She can't go down, nightmares of flames too terrifying to hide even deeper, in the not-even-lockable room with the gas-powered furnace, but she can't go up, into the brightly-lit kitchen either. There is nowhere that is safe. >.< And so she hides forever, or at least as long as she can, cold and alone. She hid other places too... in the bathroom that used to lock until her brother broke the handles, in the closet behind the clothes... she even hid in the crawlspace, that closet within a closet that only she knew she had opened. She lost that one to ice one winter, when the water crept inside the house, but at least she had the downstairs bathroom. Not even hers, in the middle of everything, the door could be barred with drawer as well as latch, making her feel a little safer... as long as she pretended not to hear the yelling through the door. >.< She hid *so much* and from *so much* and no one even realized she was scared. >.<

That poor little girl never even had a chance. As far as I can tell, she died there, alone in the cold, and I don't know how to bring her back. She's shivering, shaking in the tremors I feel even now, pausing every few seconds to let out a shudder of nervous energy that simply *will not let me be*. >.< Any time I get even close to this, it rises like a fucking tidal wave. I'm still terrified that it will one day put me in the hospital, possibly for good. >.<

On top of all this shit, the cultural rejection from my parents, we have the recent news, which really needs no explanation. The "bathroom bill" that just passed in North Carolina makes me want to just fucking sob, because I can already see the lives it will end. I know how badly the *explicit message of erasure* has hit me, and I can only imagine how bad the depression will be for bullied school kids as they are told by even their government that they are not worthy to exist. Madness. How the fuck do we expect *any* kid to not be destroyed by the fear resulting from this, in much the same way I was? >.<

I'm still hiding in that stairwell... and I don't know how to leave. >.<
zetasyanthis: (Default)
Off the heels of that last positive journal, I'm afraid I've got to write a not so pleasant one.

In the last few weeks, I've spent a lot of time thinking about my family, primarily my mom and dad, trying to figure out exactly *what* I feel towards them at this point... I've had a hell of a time connecting with the primary emotion that I feel towards them at this point, and I guess I've figured out why.

That emotion, as you might have guessed by now, is fear... fear of judgment, of rage, and of not ever being what either would want me to be. Fear is what's keeping me from calling them, day after day. It's why I blocked their phone numbers, even as my birthday passed earlier this month. And it's why I can never go back to that place again. Far too much damage has been done, and no explanation I could ever offer would make them understand the pain they caused. There is nothing left there but sadness.

I loved them once. Trusted them, as a child does, to guide me and set me on a path that would hold beneath my feet, trusted them... to catch me if I faltered. I will not say they never did, only that I cannot remember it. I will not say they did not try, either. I have not forgotten those months spent searching in vain for a cure, none of us realizing they had likely caused it in the first place. For that is what I am realizing. My anxiety stems from them, and from the fear of discovery that destroyed me for longer than I have ever acknowledged.

I know they supported me as best they could, and that in the logical ways, the financial ways, they did. In those ways, I had much more than most. But they failed... badly. Emotionally, they destroyed me, without ever realizing what they were doing. And I was a kid. What did I know? I thought I was lucky to have them, and their love.

From this, I may have learned the greatest tragedy in the universe. Love doesn't mean that you aren't hurting someone. It doesn't mean that your judgment of what's right is right for them, or that they'd be happier if they gave in, even if you have to manipulate them to get them to go along. And it certainly doesn't mean bringing them up in a faith that teaches them they are broken from the outset, and can never be fully healed.

I wonder now what might have been, if I had given signs. Almost all the way through college, I never once strayed from the rails, or gave them cause to question. I do not know what they would have done had they known. The only reactions I can remember were those involving money, because that is apparently how my family speaks. Step out of line, and tuition is threatened, or removal from a will. Bonding moments, likewise, involve needlessly expensive trips and restaurants, gifts speaking where words ought to be.

And so I set my own path, away from that which has come before. I cannot bear to continue on my current one, because it is not safe. Grief, a keening that drowns the world and shakes the very foundation of life itself, is now upon me. But I can do no else. I cannot let them hurt me again.

One final word on religion, and on spirituality. I will never be Catholic, or Jewish, or any faith that now walks this earth. Judgment, shame, and control have no place in my heart, and they never will.

A very wise man once said that "Love is a vulnerability, but not a weakness."

I would be vulnerable again.

The Church

Dec. 12th, 2015 07:17 pm
zetasyanthis: (Default)
I'm sitting here in Wicked Grounds, holding my collar. Been carrying it a lot lately, and even though I bought it almost two years ago I've never managed to put a finger on what it actually means to me. One thing I know for sure is that it's not really something sexual, which makes it rather strange. Somehow, it's felt like a safety token.

Even buying it was a spur of the moment thing, something I hadn't really considered seriously before Dakota convinced me to go over and check out the display with her. Somehow, though, when I saw it, I knew it was mine, even though I had never seen it before in my life. After a little nervous convincing, I bought it, and even ran back a few minutes later to get a few tighter notches added to the band.

Since then, I've carried it on and off, mostly to cons, but more recently it's been my daily companion, hiding in my pocket no matter where I am. It even traveled onto the factory floor in Hungary with me, though I had to take it out briefly every time I passed through the metal detectors there. I say these things to underscore its importance, even though I have not fully understood why it has held that until now. And honestly, the reason is not something I ever expected.

At first, I thought it was about control, about controlling the demons within me that I was afraid of, and that I've written about in the many journals leading up to this one. When that didn't make sense any longer, I thought it was about trust, about giving someone control... but that never quite fit, even as I said the words to myself. What it really is... is a memory, a long lost, and long forgotten memory. It is my deepest dark.

-----

A lot of folks know I was raised Catholic. If you don't, you know now. I went to a Lutheran K-8, a Catholic high school, and attended CCD growing up. Generally speaking, this meant that I had something around 8-12 hours of religious instruction per week, in addition to Mass on Sundays and (while I was at the K-8), a Lutheran service every Wednesday. My household wasn't very religious; you'll find no crosses in our kitchen, but you would have in the houses of my friends. First and foremost when I grew up was God, with a capital G, and I bought the /whole way in/.

Though the schooling was excellent, at the K-8 in particular, the culture was very aggressively conformist, and I never quite fit in. I didn't process it that way at the time, but I was "the Catholic kid" in a Lutheran school, which created pressure (usually around me), but occasionally on me as well. (I still remember and joke about the time I was sent to a half-hour detention for arguing with the pastor about transubstantiation!)

The real message here... the thing I'm trying to convey, is that I believed. I honestly, truly, did, and I was willing to fight for that belief. I took that detention in stride and was proud of it, because I knew they were wrong. If only I'd known how cripplingly wrong I was...

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But I didn't believe I was. At least not then.

At that time, I saw only the good that faith had done. I'd never encountered the true history of the Catholic church, nor had any major life event that really brought into question my faith in a more than theoretical way. And so I aspired, then as now, to do my part. I wanted to become a priest.

In theology I saw the same things I now see in science, the quest for understanding, the debates on the nature of the universe, all of it. I thought I could add to that debate, and even more so, that I could be a leader and a force for good within that community, something I still aspire to today, although my path is now vastly different.

That all shattered when I became sick. When the doctors couldn't find the cause, when all their tests were as useless as the medications they tried, I turned to God and asked "Why?". And I received silence. I eventually recovered, but it was science that saved me, that did what little it could and kept trying, no matter how many times the tests failed. It took years for those events to fully settle, but by the time I was confirmed as a Catholic in high school, even going so far as to chose a saint's name, I had lost what I once treasured. I had lost my faith. And in so doing, I had lost trust. Not trust in God, not trust in myself... the fundamental ability to truly trust anything or ever be safe again.

-----

I've been through a lot since those dark days, since the days I sealed those memories as deeply as I could. But now I am confronted with them, because I have found some small semblance of safety, and in so doing, have shattered again. This time, I'm not alone; I have friends I can lean on and ask for guidance, but it's still been rather rough. I've had to remember a lot of hard things, and my faith is one of them. It's not what it was... will never be what it was again, but some part of it remains. Today, I don't believe in a god anymore than I do the flying spaghetti monster, but some part of me wants to. Some part of my child self, hidden and weeping, has returned, and I desperately want to believe again. ...hopefully, this time in something real.

*very slow, very deep breath*

But I'm afraid. I know what it means to be a true believer, and know first hand what kind of damage that can cause yourself *and* others. It is a madness you can lose yourself in, and that I have the potential to lose myself in, again. And so I'm scared. I have a tremendous power in me to inspire, a tremendous power to communicate and level boundaries, and this is the source of that power that I have never acknowledged. I'm scared shitless of what I might do if I lose myself, and so I don't know what to do at all. This is why I freeze up when I feel safe, because I relapse to those memories, deep inside.

Friends and loved ones tell me that I'm not a monster, but that just makes it feel like they don't really know me at all. I'm more afraid than I have ever been in my entire life, even though I've made *so* *much* progress, but I don't know how to even dent this one. I need help, desperately, and I don't know what to do.

Please. Someone help. >.<

-----

At the start of this, I began with talking about my collar... but never answered the question of what it is... what it means. It is my deepest dark, a memory more terrifying than anything I have ever imagined. It's the collar of a priesthood I was never able to wear.
zetasyanthis: (Default)
I originally wrote this post on February 22nd, 2015, but had refrained from posting it until now.  Now, its time has come.

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This is going to be a difficult post. I'm a bit shaken after having returned from a movie that hit way too close to home in far too many ways... And let's get this out of the way up front. I am *very* angry.

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By now, some of you will have seen The Imitation Game. If you have not, do so. The movie is about Alan Turing's work as a cryptographer during World War II. Since you're reading this on a Turing machine, it's safe to say he's someone worth knowing about.

Alan's story is a difficult one, one of the most intensely personal tragedies of the modern age. Already a social outcast due to his odd personality, he had very few friends in his life, and only one person he ever truly bonded with. And, were it ever discovered, as it was at the end of his life, even that was forbidden him. You see, homosexuality was against the law in Britain at that time. Even though his work quite arguably won the war for the allies (estimates put him ending the war 2 years early and saving 14 million lives), he was, in the end, driven to suicide by the very country he helped save. He was forced into accepting hormone therapy, chemical castration, in order to remain out of jail, and his downward spiral found only one outlet.

In him, we lost one of the most foundational geniuses of our modern world. He not only *proved*, but *built* a universal computing engine, capable of solving any problem rather than fixed functions. It is his gift that powers the very screen you read this text on, his gift that connects this entire world. He could not have known exactly how it would grow and be shaped with time, but he *knew* what a fundamental change his discovery would cause. It is a poor testament to our legacy as a civilisation that we failed him and continue to fail others to this very day. The means may be different now, but our failures endure. *That* is what this post is about.

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Now, I knew this story before I saw the film. I thought I had grieved and dealt with the tragedy, but I was wrong... Why? Because his story is also, in some small part, my story... And it is also a difficult story to tell.

I've never had an easy time connecting with others... For a long time I made friends, interacted, and appeared to function normally to a large majority of folks I interacted with. Previous journals detail a bit more of than than I currently want to delve into, but a major part of finding myself over the past few years has involved the discovery of the term transgender, and the fact that it applies to me. I have been, and still am, fearful of judgement, even though I am trying daily to work a little bit at a time towards comfort in my identity.

I put out a few feelers via HR at my current workplace, trying to discover if there was insurance coverage, but beyond that, I've not really signaled very much. The few who I asked basically dropped the issue as soon as I was done asking the question, so it's clearly something that's still uncomfortable to them. I *think* the engineers and management I work with will be accepting, but it's going to be a struggle for me, especially as some of my roll is customer-facing. I'm not a field applications engineer (FAE), but I do stand in as one on occasion, and I doubt there are very many transgender ones of those...

That's today though, after my move to California, to a place that's hopefully more accepting than the state I had been living in. Arizona may be beautiful, but the minds of many of its inhabitants are sadly not as inspired as the geology that surrounds them...

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While in Arizona, I worked for a small defense contractor, the name of which I'm choosing to leave off here. Said contractor isn't a name you'd recognize, but their primary work is in a similar area to Turing's. Although it's been about 20 years since being gay would result in the loss of your security clearance, transgender employees are still rare enough (and security personnel paranoid enough) to result in all sorts of awkward questions. Having gender identity issues hanging over your head makes you a prime target for blackmail if you're not out as trans, something that can result in immediate loss of clearance.

As such, I lived in fear.

Though the president signed an executive order forbidding discrimination along gender lines in all federal contractors two years ago, it only takes one person to declare you a security risk and you're done. Job, lost. Career, in tatters. Hope you've got some savings, because who's going to want to hire someone who had and then lost a clearance, even in the private sector? I thought I could probably trust my coworkers with my secret, but what if I couldn't? It only takes one.

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If that wasn't problem enough, I began to have ethical problems with my work that I simply could not overcome. In the movie, Turing quickly realizes that an intelligence source that the enemy knows about is useless, a fact that remains true to this day. In order to protect access to German communications, he (and the other members of his team) had to carefully manage what intelligence they used, making sure to guard against the possibility of discovery. Thousands, perhaps tens of thousands died while they watched on, knowing that to save one ship too many, one in just the wrong way, would result in the Germans changing all of their codes. They became the arbiters of life and death, a position none of them had ever desired.

And so was I. Many still are. To work with these technologies, even to build them for another's use, must imply knowledge of their purpose. These agencies, these departments, compartmentalize their knowledge, seeking to remove the ethical choice from the builders, to place it on the users of the machines. But compartmentalization is damned from the start. These people know what they're building, they know how powerful it's becoming, and they sure as hell know exactly what it's being used for. As such they are as ethically liable as anyone else. As I was.

That is not to say that these technologies are bad, that the ability to intercept and read communications is fundamentally flawed. But it does mean that when those systems are turned into targeting systems, or handed to foreign governments who abuse their own people, that we are responsible. A lot of people have asked me why I left my job in Arizona, despite knowing how "important" it was. I know there are people alive today who would not be if I had not worked there. But I also know that there are the dead.

I am no naive innocent, imagining that every conflict can be solved without the use of violence. Though I now seek peace more directly, I fully recognize that there are some people who can only be dealt with through the use of deadly force. My problem is with neither of these statements. It is with the avoidance of responsibility. And even more fundamentally than that, it is that I am a healer, and that is not my path.

So yes. I left defense contracting. I will never return. I have seen the lack of accountability that comes with secret decision making turn into erroneous claims that "you know better than the public," that your "special access to information" gives you the right to make the call that affects so many others without their knowledge. And I am done with it.

Had I been discovered with these views in my time working for them, I would also have been escorted from the premises. It's dangerous to profess Chelsea Manning and Edward Snowden as heroes while working for the self-same industry, even on projects that are far less egregious than the ones they disclosed. But the end is the same. I could no longer trust those who I built machines for to use them in good faith, or to not hand them over to 'allies' who imprison their own people in the name of political expediency.

No human being should have to make the choices Alan Turing made as he decided who lived and who died. We *still* make those same choices now, though we are told that others will make that decision for us in the end. It does not absolve him of his responsibility then, and it does not absolve us of ours now. Some actively avoid this knowledge, safe in the fact that the system is geared towards that isolation, but others, like myself, are leaving because we can no longer stay. We are asked to be trustworthy by a system and by people who cannot be trusted themselves, and that can no longer endure.

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I'm tired of living in fear. I'm tired of living with guilt. I'm tired of pretending that this shit isn't broken, and that we aren't failing both those who serve and those who they intend to protect. I am fucking pissed, and this is the end of my imitation game.
zetasyanthis: (Default)
Darkness.  That's all there ever seems to be, anymore.  It's not that the sun isn't up there, not that the landscape isn't touched by its rays.  It's just that it doesn't seem to matter anymore.  Everything is just... gray.  It should be colorful and bright, enough to cheer anyone up, but it isn't.  Just gray.  It's not even that you can't see the colors, noting a little yellow in that gray there, a little dark green in that one.  It's just that they don't matter, that they don't touch you like they used to.  Just enough to let you know something's wrong.

That's the story my parents woke up to when I was eleven years old.

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Kids get sick.  It happens.  They get better, too, little immune systems kicking into gear and storming their way through all the standard childhood illnesses.  From chickenpox to sore throats, and sometimes even to cough-I-really-don't-want-to-go-to-school-today-cough-no-really-I'm-sick-cough, parents are used to their kids being down and out once in a while.  That doesn't mean they don't worry, or take care of them, especially when they're very young, but it does mean that there's an expectation that they'll shake off most things and be okay with a doctor's visit, a little bit of best rest, and maybe some penicillin.  I didn't.

You see, when I got an ear infection, followed by a sore throat in the summer before my sixth grade year, I was pretty miserable, but it was nothing unusual for a kid to have, or to get over.  The trip to Denver wasn't much fun once my ear flared up halfway through the trip, aching so badly I could hardly focus, but a few days at home and I was better.  Except for the cough.  That lingered a little while.

Kids think they're invincible, don't you know?  And so did I.  I bounced around, thinking nothing of it, as coughs are usually the last thing to go.  I'm not sure what my parents thought of it at the time, but I don't remember us really give it a second thought until I ended up with strep throat a few weeks later, just as the school year began. 

That wasn't very much fun.  Stuck in bed, hardly able to eat, I missed about a week of class before feeling well enough to return.  The shivers of fever subsided, and the acid at the back of my throat cooled, but the cough remained.  For a little while longer, we chalked it up to the sore throat, a not unexpected hold-over, but then it got worse.

By the time things started heading towards Thanksgiving, I was in a very bad way.  The cough wouldn't stop, day or night, and I quickly grew exhausted.  Harder and harder, my chest wracked itself, but there was no relief, just a tickle at the back of my throat that would never go away.  Eventually, I was asked to leave school until such time we got it under control, as I was disrupting class for all the other students.

Steroids were tried, as was some sort of inhalant device I can no longer remember.  I'm not sure what was in that one, but it caused the worst attack I had ever had, to the point where I almost ended up in the hospital (it was administered in a small clinic).  My parents tried everything, but nothing worked.  Eventually, psychological possibilities were looked into, and we started driving deep into the city of Chicago to see one of the few psychiatrists that seemed to have any idea what was going on.  Things still had a long ways to go, though...

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I don't remember when the tremors started.  We called them tremors because the doctor did, but they were essentially seizures, my motor neurons going insane and firing all at once in tremendous waves of activity.  It would start with a little fuzzy feeling somewhere back inside my brain, as though someone was tickling me along the border between my cerebellum and occipital lobe.  Eventually, over the course of minutes, or even hours, I would feel more and more energy leaking upwards into my brain and fanning out towards my fingertips, millimeters at a time.  I could hold it at bay for a while, but like a static charge building up in a thundercloud, there was no stopping it.  And the longer I waited, the worse it was...

If you've ever been electrocuted before, felt the jolt as you lost control of your muscles, you'll know about what I experienced, minus the burns.  Every muscle spasming, flailing wildly for minutes until all the energy in every cell was utterly exhausted, leaving me twitching, shorted out on the bed or couch.  The doctors were flummoxed, though my family doctor, Miroslav Kovacevic refused to give up on me.  A friend of my dad, he was the one who found the specialists, one after another, and kept trying.  I can't even imagine how long he was up nights trying to find anything to help, but I know he must have been, because he cared.  I know my mom and dad sure were.

About six months in, Dr. K, working with the psychiatrist whose name I can no longer recall, had built up a theory.  It didn't have a name then, but the gist was that there was some sort of correlation between anxiety, puberty, and an autoimmune disease.  Signs were starting to point towards my immune system attacking my motor neurons, triggering some sort of periodic overload.  Experiments continued, but I was basically out-of-commission aside from a few hours a day.  Tourettes Syndrom was considered as a diagnosis, as was early-onset MS, neither of which my parents wanted to hear.  I wasn't sure what they were, being so young, but now knowing what those are, it's terrifying that that was even a thought in my doctor's minds.

Eventually, we tried something new, an experimental treatment called an IVIG, which as I now understand, is used for many other autoimmune disorders.  I don't remember the details of what it was supposed to do, but I do remember having a needle in my arm for 5 days straight while the cool liquid drained into me, resetting my immune system and leaving me vulnerable to further disease.  For three years after that, I was required to take daily anti-biotics as a precautionary measure, but it didn't matter, because within days, the tremors started to fade away.  I can't even tell you what that meant to me, or my parents, but even tears were insufficient.  It took me the entire summer to catch up on my work so I wouldn't be behind a grade, but it didn't matter.  I was healthy again.  Mostly...

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Relapses are awful.  Worrying about relapses is terrifying.  Hiding a potential for relapses from your parents for years is just... don't.  They still don't know this, and I doubt I'll ever have the heart to tell them, because they've been through so many terrible things since then with my brother, but every single day I know it could come back.  If I ever overloaded to a certain point, it could, and I don't know what I'd do.  You see, that tickle in the back of my brain?  It's never gone away.  And when I'm stressed, it grows stronger, buzzing against my hind-brain...  I have to be *very* careful.

I still have lingering neurological damage from the episodes too.  Muscles all over my body, from my arm to my back to my legs will trigger randomly, small bundles twitching outside of my control.  Sometimes it's my whole leg, spasming for half a second.  It's disconcerting and harmless for now, but I am keeping an eye on it lest it grow.  Just another thing to worry about.

Those of you who know me know that my memory is just awful.  I don't think it always was, but, ironically, I can't remember.  For now, I can only assume my ability to remember things was severely damaged by this experience, meaning I have to intuit pretty much everything I do.  Luckily, I'm pretty good at patterns, because rote memorization is out for me.  (Note that this means that this story is also a recollection to the best of that memory, and the dates and times are most certainly not 100% accurate.)

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Since those days, it seems that quite a community of folks have come forward working on and dealing with a disorder that now has a name.  PANDAS, short for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, is an autoimmune disorder where the immune system basically triggers against your own neurons with all sorts of ramifications.

Reading for those curious:
http://www.nimh.nih.gov/health/publications/pandas/index.shtml
http://www.chicagoparent.com/magazines/chicago-parent/2012-august/features/pandas

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P.S.: Interestingly, it was 1998 when I treated, the same year a paper came out proposing a classification of the disorder with the first 50 cases.  I'm not sure if my results were included in that paper, but that would be something, wouldn't it?  If nothing else, I was one of the first diagnosed in Chicago.  Though, truth be told, if that's my claim to fame, I'd like it back please...  Something else would be a bit more enjoyable than this.  :/

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Zeta Syanthis

June 2017

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