
aloneunaided
- April 28th, 2:09
Where to begin. As far as I'm able to tell there are only two or three people who are really going to want to know this stuff, and it's a lot to try to get put up in some kind of logical order. I'm wondering if it's really worth the trouble considering that as soon as everything here is back to it's normal state of chaos I'm probably going to abandoned LJ again anyway. I could just email a couple people. Buuuuuuuuuuuut then someone else might pop up and then they'd want to be kept in the loop too and I'd have to remember who and where and what and well fuck that.
Shit.
I'm much too sober for this.
Where to start. I should get some visual aids or something. Shit it's a quarter past 2. Damn. Ok, well I'll start anyway.
Ryan. Not too many people who know him in this particular venue at this particular time know much about him. In the past there were many who did, they're all gone, back to square one. My brother doesn't reveal much about what he, or his life, is really like. He tells people he's crazy and sometimes he demonstrates that absolutely unquestionably, but he doesn't tell people what's really going on, or what he's really like. Or what kind of a hell his life honestly is.
He just ignores it and figures what they don't need to know wont keep them up at night.
Those are his words, people people, "What they don't know wont keep them up at night."
Well...to appreciate the changes that appear to be happening, you'll need some background that he didn't give you.
First and foremost, not everything he's said about his past is true. When you're talking to someone who's delusional, things get fucked up.
The facts as they relate to his current situation would probably be where to go next, I guess.
Well most of the people who know him know he's schizophrenic. Diagnosed, packaged and giftwrapped. There's a lot of crazy in our family, we have our mom to thank for that (THANKS MOM!!) and there's no getting around it. He hallucinates, he's delusional, his thoughts are completely disordered a lot of the time, and his communication and social skills are just flat out weird. I, personally, like him. Other people tend to cross the street.
But....a lot of stuff that Ryan's had going on has over the years gotten lumped in with his psychiatric diagnosis and forgotten, even though it has nothing to do with that at all.
Ryan was born with what they then called a "global sensory disorder". Please google it so I don't have to explain. Aside from whatever else it might mean, his nervous system was hypersensitive and all cracked out. He could never stand to be touched, because anything other than extremely deep pressure actually caused him pain. He can't be hugged, or draped over, or tapped, patted, pulled, nothing. He can't stand to be touched. If he sees he's about to be touched and has a second to process, nothing too weird happens... he just hates it. If he doesn't know it's coming, his cracked out nervous system perceives it as an attack and he fights back. Shocking to walk up to someone and put a hand on their shoulder and get your face slugged off for your trouble. He's also been known to bite when people touch him unexpectedly.
He doesn't mean to do it, it's not a behavioral thing, it's a primitive kind of fight or flight response. I sometimes have had occasion to wish he tended more toward flight than fight but we don't always have things our way. While this isn't his fault, and isn't anything he can be blamed for, it does make it hard for him to go out, and it does make him assaultive. Having to constantly monitor yourself so that you don't inadvertently smack down some little old lady who bumped you with her purse is pretty fucking stressful. This of course just adds to his appearance as completely crazy, and most people have always thought all of this is just another sign of his schizophrenia.
It's not even related. It's 100% physical.
Wrapped up in this little problem is another one that makes it difficult or impossible for him to understand the internal physical cues his body gives him. You and I know when we have to pee...Ryan doesn't. He had to work out a system so he wasn't peeing in his shoe all these years. You and I know when we have a headache. Ryan doesn't. He knows somethings wrong but he has to sit down and concentrate and figure it out. It's no big deal when it only means he has to wait an extra few minutes to figure out he's got a headache and go get an advil. It's more of a problem if he's about to puke. See where I'm coming from? By the time he figures out what's going on things have become unfortunate.
This too is often blamed on his mental health. I've never been sure why, because what does not knowing when you have to pee have to do with sanity?
Alone those things would be bad enough, but he also has a serious, serious, serious seizure disorder that's almost killed him way too many times to count. From the time he was a baby he had dozens of seizures a day, and by the time I was old enough to understand what a seizure was, he was having hundreds. A lot of them were little absence seizures, which it turns out are causing him a huge problem now, but most of them were full on tonic clonic fall on the floor shaking and foaming classic like you see on tv seizures. He's hurt himself, badly, thousands of times. He's broken his teeth, bitten off part of his tongue, broken probably every bone in his body at least once, and though we didn't know it until last week, fractured his skull a whole bunch of times and has bled into his brain. He's also had more than a dozen episodes of status epilepticus, which is a seizure that wont stop. These involve trips to the ER for IV drugs to stop the seizures before they kill him. One of these episodes had him in a medically induced coma for six days. Fun times.
All in all this made him pretty non functional for most of his life, but a few years ago he got a VNS system, again please google that so I don't have to explain. Type in Vagus Nerve Stimulator.
It wasn't a magic cure but it helped a lot and cut him back to only ten or so seizures a day instead of fifty.
Ironically enough, the seizures were never thought to be part of his schizophrenia, but as we've found out just today (never mind that Dr D's been telling us for years and we've called him a retard. that's not important), a good percentage of his schizophrenia was really seizures. We'll get to that.
With the exception of the crazy he inherited from mom, most of these problems were caused by a serious brain injury he was born with. Cat scans and MRI's have always shown a huge section of dead/dysfunctional brain starting right between his eyes and running back up and off to one side. See why I need visual aids? This thing ran right through the sections responsible for thought, processing, sensory systems, language....he essentially had a large vacant lot in his brain, and if it had just sat there and done nothing it might not have been the huge problem it has been. It didn't do that. It didn't do anything useful, but it was hyperexciteable and irritable and sent out all kinds of rotten signals. We found out a few days ago that it was doing something else, as well. We'll get to that. Too. When he was little his neurologist suggested having it removed, thinking it was more than likely the source of his seizures. My parents were worried about his quality of life, and decided to go with options that didn't involve cutting into his brain.
So, he's had that going on all his life.
He also never laughed or cried, which is something most people don't know. It's not that he didn't feel happiness or sadness...he did. And it wasn't that flat affect you hear about so much with schizophrenic people. He had expressions, he smiled, he frowned, his face was mobile. But he never laughed and he never cried. Ever. In his life. Even when he was little.
I asked him once if he never found things funny. He said he did. Laughter just didn't happen for him. Neither did crying. A few times when he whacked himself a good one his eyes would tear up and water but that isn't the same thing.
Explanation? CRAZY.
He also never slept. He's always had to be medicated to sleep and even then his sleep has never been normal. sleep is alien to him.
There's also the HIV thing, but I'm not going to get into that now. It's meaningless, since it turns out he's not HIV+. I might explain that all bullshit later on but I'm not going to do it now. It has nothing to do with this other than it was just one more fucked up thing in an already way too fucked up life.
How we doin' people. Are we with me? I'm not sure I am, it's now a quarter to three.
Fast forward to the present day....skip over years of staff, hospitals, meds that didnt work, a nightmare of a life. I want to add in though that being so tactile defensive and having such a hyperactive nervous system caused an issue none of us would like to have happen to us. It eliminates any kind of sex life if you can't stand to be touched, and a nervous system that perceives a hug as pain can do some real unpleasant things to an orgasm if indeed it ever lets you get that far. Just saying.
Ryans tried to kill himself multiple times. Always it was seen as just another sign of his being crazy. It wasn't until it was pointed out to us today that we realized how wrong that thinking was. If you lived his life, could you do it? Could I? Could I live in constant pain, confusion, and chaos with no relief, hope, or cure? I don't think I could. Could you live knowing that nobody will ever be able to comfort you, touch you, hug you, kiss you? While being in constant pain and under the continual threat of death by your own brain? It's something to think about.
Ryans suicide attempts weren't signs of his psychiatric diagnosis. They were reactions to depression and despair over knowing there was never going to be any help or any relief or any way he was ever going to really live. There were too many times when he just couldn't take it anymore. He's lasted a lot longer than I would have. I think every morning that he wakes up and gets out of bed is an act of bravery.
And for the record, he almost never left the house. He used to talk about going out....and once in a very great while he did...but he spent 99% of the time inside because he was too afraid of what might happen to go out.
A few months ago his memory started to do weird shit. He would forget things that had happened, and his mind would make up alternate versions. He reached a point where he had no idea what was a real memory and what was delusion. See subcategory: Zack is dead!
Couple weeks ago I guess he went out with some friends. He came back alone, soaking wet and freezing, in the middle of the night. He couldn't tell anyone what had happened, because he couldn't remember. He went to a doctor. Schizophrenic issue, he was told.
Every day that went by lost him more and more of his ability to remember anything. His short term memory was completely shot and I'm told he'd stand in one place for hours because he couldnt remember what he was doing or if he'd done it. He tried to get help and he was denied. He tried to go into a hospital and was turned away. He told doctor after doctor and when he couldn't remember five minutes ago long enough to tell them anything, he brought his friend with him to tell them. They all told him it was probably meds and he'd have to get them adjusted.
They just couldn't give him a bed anywhere so he could do that.
On top of the memory thing he'd developed some other problems. He couldn't swallow well, or close his lips around a cup. When he tried to drink he made a horrible mess and choked on it. He was vomiting many many times a day and he never seemed to have any idea he was going to. He says now that he doesn't remember ever feeling sick. He was having trouble focusing, couldn't read, couldn't concentrate.
Explanation? Crazy.
And so last week he gave up. He asked for help a million times, nobody would help him, and he couldn't take care of himself at all anymore. He had lost a few other basic things I'm not going to go into here, but his situation wasn't tolerable, nobody would help him, and so he wrote himself a note. In huge drawn letters like a little kid would do. It was instructions on where to go and what to do to kill himself. He had to write it down because he knew he wouldn't remember what he was doing.
He almost succeeded. He was found by an old drunk homeless man under a pier up off tchoupitoulas. He was still alive but barely. By the time the ambulance got him he was bled out, not breathing, nothing. Thank God for EMT's who thought it was worth a shot to try to fill him up and restart him. All in all he was without circulation and breathing for less than ten minutes, and they consider that really great. I consider it a fucking nightmare.
That he should have been driven to that at all.
Explanation? Fucking loon.
Some doctor apparantly turned him over and realized his fingers were sinking into the back of my brothers head. How's that turn you on?
As soon as they had him breathing and fully blooded again, stitched up, they did some kind of scan that wouldn't rip the vns out of his chest, and discovered that the back of his head was not only bashed in, but had been for some time. There were other spots on his head that weren't fully intact, as well. His brain was full of shadows that they said were blood clots, and they suspected he'd been actively bleeding into his brain for a number of weeks.
So, they operated to remove the blood clots and repair the skull damage.
While they were in there, they got a good look at the part of his brain that had always been suspected of causing his seizures. They discovered that it had the consistancy of threaded jello, and when they were suctioning out the blood in his brain, some of this jello like tissue that used to be his brain came with.
Long story full of neurosurgeons, explanations, opinions and permissions later they removed the huge section of gellid crap that wasn't a working brain, and they discovered that it had been doing damage to the rest of his brain all of this time. The areas where it abutted normal brain tissue were inflamed and they found long stretches of scarring. He's had this thing causing a chronic inflammatory condition in his brain for more than 20 years. He has scars on his brain.
They were happy to see that when they had sucked out all of the goo that wasn't a brain, the inflamed areas almost immediately started to calm down. The neurosurgeons were happy.
Ryan wasn't happy, because when he woke up he was still alive.
It's been a few days now. He's still in the ICU, but everyone's just fucking thrilled with how great his heads healing. No swelling, no increased pressure, no problems.
Thank god for whatever blessings he wants to give us, right?
It's been a few days now and a few other things have happened...or failed to happen.
Ryan hasn't had any seizures.
When he first came out of surgery his EEG showed a few little pre seizurlike thingys but those stopped and since then he's had none. Not even little absence seizures. He's never gone one day seizure free, let alone three. He's not having seizures.
Will they come back? I dont know. I don't think so, because I think his doctors were right. That bad goop in his head was the problem. Of course there's the scarring which could cause some problems. We don't know.
He's been sleeping...real sleep...the kind everyone does...off and on this whole time as well. He's never experienced real sleep till now.
His memory is improving by the hour it seems like.
Normally this would be a stupid chatty thing all full of jokes and all thrilled and happy...but I'm not that happy. I'm really not. I'm really fucking terrified for him.
Because I've seen him the last couple days, and while he should be so amazingly overjoyed at the relief from the seizures, the ability to sleep, the beginnings of the normalization of his sensory systems, because yes there's a tiny bit of that just starting too, he's not. He's terrified. He has no idea how to cope. He's getting no meds, because they want his levels to zero so they know what to medicate. What's going to come back, what might no longer need treatment, whatever.
He's experiencing a whole gamut of feelings and sensations he's never experienced before. His days are, as he put it, "SOOOOOO long" because he's never experienced sequential time without dropping out in dozens of absences. The way his body feels is changing, and it doesn't feel good. It feels, he says, creepy. He says the inside of his head feels like it's being shocked....I guess that must be what your brain healing feels like? He's had a bunch of scans and everything in there is good.
He's not eating. He's not talking much. He's not sure what's going on or what the end result is going to be. The only thing any of us are sure of is that he's still going to be crazy when all is said and done. THAT we can't blame on brain damage. BUT....even his crazy is changing. The one thing he knew intimately and with ultimate predictability, is changing. His transient, fleeting, weird come and go delusions that we refused to believe were seizures, were seizures, and they're gone. His strange dreamlike hallucinations and visions that hit and ran all day long are gone. They, too, were seizures. His doctor told us for years that schizophrenia doesnt act like that, but seizures do. We said waved him off....he was right.
And since right at the moment Ryan isn't actively psychotic....he has nothing but reality. He has no idea how to cope with reality.
I've never in my life been more worried about him than I am right now. He's in completely alien territory and he's scared to death.
I keep wishing he'd decompensate...a good old fashioned psychotic episode would at least put him on familiar ground.
Don't get me wrong. He's not cured.....he's still all fucked up. But he's not as fucked up as he 's used to being. He's experiencing a lot more accurate reality than he ever has before. On top of being exhausted and in pain he's getting more and more depressed.
Dr D says he expects that, and not to worry.
He's trying not to show that he's tickled to death about all of this. He says he's trying to respect the fact that Ryan's just been essentially thrown into foreign territory with no translator and not even a little book of words. But he's happy. He told me "Zack, if your brother could get through 25 years of the hell that was his life, he'll adjust just fine to his life NOT being hell. Give him some time, he's not even out of the ICU yet."
I do believe him, and I do have faith in him, and in my brother.
Jello head's a pretty tough guy, and he doesn't give up easy.
I just wish I could do something to help smooth it out some.
It's 3:30. Until next time, people.