Small comforts

[kyburg]

I'm sipping some Bailey's tonight. Just a little sake cup full - if I read between the lines properly, a dear friend is losing one of her cats tonight in Chicago. He deserves some Suntory - but it would be too harsh. Bailey's is more appropriate - warm, soothing and sweet. Poor dears. It's a cancer death, and she didn't flinch, waffle or lose it completely - but saw it through to the end. She gave him everything he could have - that was how she played it. Good job, pywacket.

Tomorrow is an important date as well - Jim's older brother was supposed to have his jury trial then on the charges of domestic violence. He asked for one - and I suppose (and I have to guess at everything, there has been no discussion except through Jim's Mom) that he is putting his ability to "sell" his story on the line. Whatever happens, let the truth be known - that's all I can ask for. Mom has gone up to Chicago to help with the kids - I hope to talk to them Thursday night.

And while today wasn't as bad as yesterday, I was still frantically busy patching holes where there shouldn't be any. Two of our strongest players were out on child care detail (holiday, schools closed - so the Dads stayed home. Neat, huh?) - so it was quieter, but only by comparison. I expect to remain frantic through the holidays.

The broken software remains broken. The unrepentant bastards.

The DSL line at home still bounces like a bad check. *sigh* Everything that can be done, is being done. Nothing more to do.

I've asked for a potluck at work - we're all too busy to go out to eat this year for my birthday. And after a layoff like we just had, inappropriate.

People may wonder why some people stay on my friends list. You know I don't unfriend - I do bitch a lot, though. A number of people on my friends list have brain injury or an affective brain disorder. Both dragonrankmage and hobbitblue deal with seizures. being_homeless can directly trace her current homeless condition to her TBI - knows how her life has changed, every step of the way - and how much she falls short from "normal." She's such a bright penny - she needs a supportive home to cover what the injury has taken from her - balancing that with the desperate need we all have to remain independent is the constant dilemma. It's constant with all of my friends dealing with brain dysfunctions. It's like having a broken back - only few people know how to deal with someone on broken brain syndrome.

Few people recognize it.

If there was a question whether shadesong really has had a epilepsy diagnosis, her behavior the past few months clinches it. I'm trying to remember how long I've been reading her journal - the fact I'm coming up on two years writing this one is something of a shock. The anger, the displacement of that anger on people trying to offer sympathy and support - the depression, the despair...very familiar.

Cliff had a cluster of strokes that signalled the true beginning of the end of his life - it ended his life as a productive, employed adult. Because he developed seizures - and at first, they weren't noticeable. His employer chalked up his poor attitude, paranoia and lack of job performance to his diabetes, the existing injuries and recovery from multiple surgeries - and they thought he was being "difficult." They were going to fire him, actually.

I'm not going to cut-tag this. Read ahead if you dare.

We thought he was stressed. He couldn't find his way home from work. He drove the car one night until he ran out of gas, unable to find his way home. He was able to find his way to a market to call me to come get him - twice. The first time, the gas station was only a block away from where the car sat. The second time, he was hysterical and didn't know where he was. He called my sister because he couldn't remember his own phone number and hers was the only one he knew. When we brought him back home, he didn't know what day it was. Mom was there - and Cliff had a psychological therapy appointment the next day. We thought it was stress. Mom took him to his appointment, but they didn't make it there. Cliff had a grand mal seizure in the parking lot - and all became clear.

It didn't get better from there - but that's enough. Throughout the rest of the process - the heart attacks, the amputations, the dialysis - we had to deal with a broken brain. He didn't get stupid or retarded. But there were some things he simply could not do anymore - and on some days, the rules changed. He honestly grew to hate me. He could have perceived me as his personal jailer, and it wouldn't have been far off the mark - but I wasn't the one holding him back, y'see. I just didn't give him the keys to car, the credit or ATM cards or all of the pills in the bottles. *shakes head* Ah, such a bitch I am.

I give people with brain injury/disease a lot of wiggle room when it comes to being dramatic. Cliff was certain he'd gotten into a fight with the neighbors - physical, assaultive, thrown to the ground, grass up his nose - fight. A hallucination. When I go down some streets in Anaheim today, I get shivers - because he told me when he had been driving those roads, he'd hallucinated the palm trees running the other way. Running in front of the car. Things like that. My husband may have hidden some things from me, but he couldn't lie to save his life - and he was so hurt that his own brain had betrayed him, it's hard to describe. He didn't lie to me about this.

He lost everything. His medications were Dilantin and Klonopin. Dilantin is like swallowing a battery - it's that alkaline. And I'll stop there. It's also one of those that has to be monitored by blood draw - and too much is as bad as too little. I'm very good at dealing with someone having a seizure - I've had lots of practice.

Cliff stopped breathing during them.

I would expect some really socially unacceptable behavior from her. And I expect to take some flack right now for saying so. I can't be untrue to myself about this. She has a great support team where she is - she's doing her homework about what to do next - she's writing it all down and putting the lie to it just like I would want anyone facing confusing times like these. I can't ask any more.

And no, she's nowhere close to Cliff in severity. Neither in cause or prognosis. However - the affects are very real, and how she feels about this whole matter is very real.

I won't say I know how it feels. But I do recognize the feelings. To those who get battered, forgive. Don't take it personally. To Shadesong, no coddling. You don't want it and I think you'd find it confusing coming from me, anyway. You want the benefit of my experience, it is here for your perusal - just ask. I can talk about anything. Just - it can ruin your day, okay? My perspective of what "bad" is can be completely skewed. Cliff spent a lot of time in hospitals, but he was never committed to a nursing home. He was never "warehoused." I made sure he was never left alone for long periods of time - that wasn't safe - but he had as much independence as could be granted him. I loved him.

Fuck with me, though and you're history. Dig?

It's been a long day. I think another cup of Bailey's is in order. Art Carney is gone. A lot of people are gone. I wanted to hang some banners on Veteran Memorials today that read "Pro-Life My Ass."

I'm going to go kick some more ass tomorrow.

Comments

[riverheart.livejournal.com]

You just rock, you know that?

:-)

Hey, what do you want for your birthday?

[kyburg.livejournal.com]

Now, that's a toughie. I'll let Amazon do the talking. There's a wish list link on my info page. ^^

Also, Basin.com ships bath fizzies.

[feyandstrange.livejournal.com]

...keep up the good fight.

And thanks for the unintentional kick in the ass. I' of all people, should have known better than to get pissed at, and worse, disspointed in, a friend of mine who I know damn well is not in control of his own life these days, and needs some help. But I forgot it briefly, because he fakes it well enough sometimes. Bad me.

[kyburg.livejournal.com]

It's hard, it hurts and it's just not fair.

Sums it up, neh?

[being-homeless.livejournal.com]

Dilantin is like swallowing a battery - it's that alkaline. And I'll stop there. It's also one of those that has to be monitored by blood draw - and too much is as bad as too little
you can say THAT again...

(((hugs)))

[shadesong.livejournal.com]

If there was a question whether shadesong really has had a epilepsy diagnosis

There was a question? *raises eyebrow* Because I can scan in my MRI if there's doubt.

The anger, the displacement of that anger on people trying to offer sympathy and support

Inaccurate.... the people in question never offered support. They dropped me without a word - one attacked me in e-mail when I asked what had happened, and the others never responded. One has claimed that I said that she didn't like me because I wasn't being a sex-toy anymore - also 100% inaccurate, as she knew via the e-mail I sent her. I told her via e-mail that it *wasn't* that, that I'd said that she defriended me because the other two demanded it. And then she proceeded to make her post, which is a blatant lie, as I had already told her TWICE that I had not said that. The post yesterday was about the line of bullshit Jen has flung at me, btw.


She has a great support team where she is - she's doing her homework about what to do next - she's writing it all down and putting the lie to it just like I would want anyone facing confusing times like these. I can't ask any more.

Thank you for giving me credit. I do feel that I'm putting in a lot of effort regarding understanding and controlling this. Also, it's only been a month and a week since the diagnosis - and this is my BRAIN, y'know? There's an adjustment period.

To Shadesong, no coddling. You don't want it

Exactly - and I'm glad that you see what's really going on with me, instead of buying into the vicious, nasty propaganda.

[kyburg.livejournal.com]

We may need to start bulleting this discussion to keep the points in order - short and sweet, as much as I can be:

Why, yes - I'm surprised you hadn't picked up on that subplot. You can fake a really good diagnosis on paper - and people with no morals do it daily. I've known a few. *shivers* Great, now I feel dirty. I didn't need to remember that.

If you want to post the MRI results - Cliff's was done by CAT scan and plain old skull series - I still remember looking at the films.

They looked like he had a head full of popcorn. He was 33 years old.

Point two - both sides have subjective experiences with their own filters. 25 words on one side and total silence on the other does not provide me a complete picture, neh? I was a little rocked by some of the comments too. Pretty harsh, but Jen also self-censored - which I have to give credit for. There's a lot more going on here than I am party to - or NEED TO BE.

People will make up their own minds. I'd let them. Stand down - you've really got enough on your own plate without worrying about other people. Also, people who won't give you the benefit of the doubt right now aren't looking at the whole picture - and I'd check a few other journals for confirmation of this - you're dealing with a whole new category of prejudice for the first time. See your first statement -

dragonrankmage's seizures are entirely related to his PTSD. He was in the hospital for weeks to find their cause - and after they could not find a seizure or an injury, they sent him packing with that diagnosis. Not controllable with medication - and it's all in his head. Would you like that one instead? His are partial, like yours. He's writing novels, like you are. How much support do you think he gets for his permanent brain fuck?

I wish we could coax zoe_bat out of hiding - she did an entire pregnancy on Lamictal, puking it up every morning and wondering how the freak she was going to maintain sufficient levels to prevent seizures - and then having to deal with the medical crap to get more pills when her HMO didn't allow refills to replace the ones she lost.

There will come a time when you will wish you didn't know what you know. However, you can't stop learning more every day. If the doctors you are dealing with are ready to discuss theories and fancies at any time of the day or night, you've got good ones. If you don't, they exist and you need to go find them. I had them - they were my best friends. Don't quit thinking, reading, questioning - it's your life. And it will make a difference. I'm glad I don't have to tell you that or insist you do the work - really glad.

I had to get the crash course in two days. Adjustment period - I can't say.

Vicious, nasty propaganda - no.

People who are hurt, put off - and reactive? Yes.

I worked pretty hard to keep everyone straight, too. I look back at that now and wonder why I cared so much. It made so little difference and didn't last.

However - your experience is your experience and theirs is theirs. I had to accept that - and you can too, without breaking. I'm not going to tell you it's nice, fair or painless. But you can't control it, either.

It may very well be bullshit - I'm not going to pass that through my filters and make a ruling on it. Everyone has their own POV - and I've had to cope with them not being very good for me. Cliff's family has basically disappeared from my life - the day he died, not one of them came to see me. I don't think they even called.

It gets complicated.

I've been judged harshly by people who didn't know what was going on - and I didn't want to bring them into the loop because they'd have nightmares from it. You can alienate a lot of people right now - I don't think that's what you want. You won't be able to keep them all straight, either.

I tell you - forgive. They know not.

And a compassionate human being doesn't want them to know.

[shadesong.livejournal.com]

Why, yes - I'm surprised you hadn't picked up on that subplot. You can fake a really good diagnosis on paper - and people with no morals do it daily.

That's...

I'm speechless. I couldn't even imagine.

And them even having the idea proves what kind of people they are. I wouldn't have thought anyone would or could do that.

Fuck, MRI stuff aside - ask yendi what it's like to be in the room with me when I have one. Ask him what went on in the neurologist's office - he was there.

Jesus. I can't begin to comprehend.

If you want to post the MRI results - Cliff's was done by CAT scan and plain old skull series - I still remember looking at the films.


I'm going to ask my neurologist for copies when I talk to her next week. I'll put them on sickhippo.

Also, people who won't give you the benefit of the doubt right now aren't looking at the whole picture - and I'd check a few other journals for confirmation of this

*nods* I'd recommend kaifoxx's entry - not only is it good in and of itself, but she knows part of one of my other stressors.

you're dealing with a whole new category of prejudice for the first time.

I guess I am. I hadn't even considered that people could think that way.

dragonrankmage's seizures are entirely related to his PTSD. He was in the hospital for weeks to find their cause - and after they could not find a seizure or an injury, they sent him packing with that diagnosis. Not controllable with medication - and it's all in his head.

That sucks. We're theorizing that mine is also due to my PTSD, the PTSD having atrophied the hippocampus. But as I've said before, I'm glad I have a blatantly obvious physical cause, that my neuro looked at the films and instantly saw exactly what the problem was. Because I'd hate to wonder if I was going insane, you know? I'm lucky that my physical cause is so clear and undeniable.

Don't quit thinking, reading, questioning - it's your life. And it will make a difference. I'm glad I don't have to tell you that or insist you do the work - really glad.

That's my nature, y'know? I can't stand NOT KNOWING.

[riverheart.livejournal.com]

One has claimed that I said that she didn't like me because I wasn't being a sex-toy anymore - also 100% inaccurate, as she knew via the e-mail I sent her.

I am the other person in question. That email was never received. I don't dispute that it was sent, but it didn't make it here.

What I was told by a friend was that you had posted the following in a post that I could not see or respond to:
"Guess they didn't like me when I wasn't being a perky little sextoy (which is, incidentally, why I never visited Seattle)."
The friend in question told me that that "they" included me. That's where I am getting this information. Did you post this where I could not see or respond to it? If not, I am obviously getting bad information.

I told her via e-mail that it *wasn't* that, that I'd said that she defriended me because the other two demanded it.
Again, I never got any response. You may have posted it. You may have sent it. It *never* got here.

And then she proceeded to make her post, which is a blatant lie, as I had already told her TWICE that I had not said that.

Going on information I have is not a lie.

Saying that I delisted you rather than "defriended" you - because I do care about you - is not a lie.

Saying that I have too many issues of my own at this time to be able to also encompass yours is not a lie.

Saying that I had been considering this for quite some time - since well before your diagnosis came in - and that I deliberately waited because I cared and wanted to be able to provide support is not a lie.

All of that was in the comment you deleted.

[shadesong.livejournal.com]

I'm not discussing this with you anymore, as I have said elsejournal. I'm sick of it, and I don't know why you're persiting on the attack.

[kyburg.livejournal.com]

And I'm going to tell you both (gee, I hope this works, LJ) - if I thought any of the people involved in this conversation was guilty of the prejudice I described - trust me, I would have confronted you on it.

I have 485 journals on the friends list and 76 communities. I read a lot on a daily basis. I haven't seen anything overt yet - but you should be wary and prepared for it.

Hackles down. I'll vouch for River - come on, of all people, you'd be the person I'd expect to recognize her attempts to be understood, Shade! Baaad blood in the background, to be sure - but she doesn't deserve your claws. Neither of you has to have anything to do with other - but I'd prefer peace be maintained here. Not a cold war. M'kay?

And River? It's okay if she doesn't want to be friends right now. It's not you. It sounds like you, it walks like you - but you have to trust me on this. It's not all you. You're wise to recognize a big challenge and back away as gracefully as you could. I think this qualifies. Leave it be.

Welcome to Swiss territory. I don't take sides - and I only make war when I'm attacked. I can rent you space to settle your differences - *winks.* But you gotta understand - I can listen to both of you and believe that you're both right and support both of you. Independent of the other, and that's just the way it is. I'm not going to decide someone is right and someone is wrong. Not my job.

Now, I've got more for Shade, but she gets her own reply.

And it's fucking raining hail bullets here - WTF?

[shadesong.livejournal.com]

Hackles down. I'll vouch for River - come on, of all people, you'd be the person I'd expect to recognize her attempts to be understood, Shade!

I see no attempts to be understood. I see a whiny attention-whore bitchfest.

As I said, I will not discuss this anymore. She can post her "look at me, I'm a victim" diatribes in her journal all she wants. I have better things to do. As I've said repeatedly, my quarrel was never with her. Or with any of these morons. The one bitch flamed me when I had the temerity to ask her what was wrong, and then River decided to jump in.

As I keep saying - I will not discuss this anymore. It's a waste of my time to engage in this idiocy.

[riverheart.livejournal.com]

Thanks, kyburg. I needed that.

We may be down your way for a few days, but when is not yet determined. We found what appears to be a *very* fine male fertility clinic where my love may have his reversal done. I'll let you know if and when we do journey that way, so we can hopefully all get together to visit before Charles goes under the knife. (People aren't usually at their best after surgery...and while I love Charles with all my heart, he's a lousy patient.)

[riverheart.livejournal.com]

I did offer support, and also suggested that you get in touch with a smart, funny, caring, and sage woman I know personally, one who is epileptic and has personal experience with explaining seizures to children and dealing with seizures in general: omahas.

I did not, and do not, offer coddling. I offer resources I know of.

I still haven't received the email, and I've gotten email and LJ-post notifications steadily. If you resend it, or send another, I might get it; I hope I do. Try sending to arwen at schatzie dot com instead of my LJ address.

[kyburg.livejournal.com]

And if she doesn't, it's not because you didn't try. You did.

[musicalchaos.livejournal.com]

Losing a cat to cancer sucks monkey balls... I know because just about a year or so ago we lost our youngest cat to a tumor that was in his digestive tract... the poor thing was in such pain that we finally relented and put him to sleep. It still saddens me to think about it...
Yeah, and broken brains are hell too... My mother suffered from a brain encephalopthy a few years back... She in effect lost every mental function she had, there were literally times (and this was the norm mind you) when she would sleep all day, wake up for dinner, go back to bed, and wake up 15 minutes later asking when dinner was... Fortunately, I suppose we could be considered one of the lucky cases, she's regained a good deal of her mental capability, thought she'll never be as sharp as she used to be, and there are still major problems with some of the meds. All this on top of her pre-existing disorders... *sigh* as much as I may bitch about her, I do worry, and don't want to see anything more happen to her.

[hobbitblue.livejournal.com]

Yep, I deal with the seizure thing too, and I got told it was all in my mind way too often, so after several years of being passed from pillar to post, them getting no results on the tests and thereofre sending me to yet another psych doctor, and getting so much "oh, she's a woman, she's neurotic", "oh, she's overweight, its a cry for attention" from the male ones, when all the female ones just wanted to help me find a cure for what *was* not and *is* not a psych problem, I gave up. There's nothing life threatening, they have no cures and no interest in even trying to help, so screw the doctors, I'll manage somehow. And I have been.
Differnce with me is I went through most of the adjustment period and the fear of losing brain ability, and the worry about longterm effects etc etc before I even got an lj, and though I post a lot, I keep a lot back thats personal to me on that level. And mine are pretty much controlled, but then again I'm pretty limited, and don't have to hold down a job or care for a child or pretty much do anything other than be ill/have fun when not ill, which helps. Sucks, but helps.
And I get scared, and angry, and frustrated but most of that doesn't get on lj, because my lj is mainly a "lookie, I did stuff, life is good" place, I don't want to remember the bad times.

Shade does things diffferently, her lj is where most aspects of her life get chronicled, good and bad, and that's just fine; people who read her (I'll avoid the word friends for now) get to read about the fun stuff, and the partying and the sex stuff and the joy, we should damned well also be there to read the downsides, and the scary stuff, and the way she's coping with same. Her journal, her life. There are people better off, there are people worse off, doesn't alter Shade's experiences.
The worst thing in all this drama is that having something similar, I'm maybe closer to understanding what she's going thru, but there's so many people putting their views in I'm keeping back for now until things settle down some, and anything I might have to say can be seen as helpful.

[wolfshaman.livejournal.com]

I found you through Shadesong and Riverheart. I like what you had to say so I friended you.