Save it
So, it's the end of August. The weather is still gross. People are shifting gears... from vacation to school... from vacation to work. Life goes on... things change and yet stay the same.
On the phone with RavensWings yesterday, I mentioned how sometimes I really don't mind that my MS is progressing. At least something in my life is going somewhere. It was like that when I was working too. It was the whole "revolving door" feeling. Same thing, day after day. Going nowhere and being expected to be content with that.
Goals. That's what people will say is needed. Goals. If you don't have a goal, then you'll stagnate. Thing is, with work, the goal is often "the next paycheck". "The next vacation", if you're lucky enough to have a job that affords you one.
With me, my goal has to be set at getting through the day without ending up dead, in jail, in the hospital, or in the street. I have to have little goals like "shower" or "eat". Yeah... "one day at a time." Right? Sorry. Real life don't work that way. "One day at a time" might get you through the day, but the day after you'll probably be broke and out of food. If you don't take tomorrow into consideration, you usually end up fucking yourself.
I don't know why I'm going on about all this. Guess I'm still depressed.
Clinging
I hold onto too much... all across the board. ...out of guilt... out of fear... out of hope... out of stubborness... it's all the same in the end. I end up with too much shit... too much stuff. I even have blogs still bookmarked that people abandoned a year ago... and I keep checking back... hoping they might suddenly pick up where they left off.
Why is it so difficult for me to let go of things?
(Yes, that was rhetorical. I already know the answers.)
The down side
It's all extreme... even the depression, when it hits.
At the moment, it's hitting.
Don't kill myself. Don't kill anyone else. Don't stop bitching about it.
REmembering
I read that the "world's oldest living person", according to the Guinness book, just passed away. I think that I read that she was 116. Thought... "Wow... all that knowledge... gone."
She had kids, so I suppose that some of the knowledge was passed on. That's just it though... other than those kids, and anyone else she happened to tell her stories to, no one else will be able to hear the knowledge first hand... unless she wrote and the writing is still around, or unless she was otherwise recorded.
"The truth" varies from person to person. It's just the way the brain works. The way we remember things is filtered... compacted as it's stored... we fill in the gaps later, if we need to recall the information. With details, we hang onto what we consider to be the most important ones, and I suppose that we determine that by how intensely the event affected us, or how important we feel things to be. Often, we get it all wrong anyway. We remember things and over time, we distort the actual event. We forget. We re-prioritize. We integrate things we create in our heads after the fact.
I have friends who can remember what they wore 15 years ago. I can't remember what I wore yesterday. Same too, they can remember what I wore to an event 15 years ago. I can't remember what they wore last time I saw them. Doesn't mean that they were naked though, so I take their word for it... give them the benefit of the doubt.
Stories. We tell our stories, and the stories are tinted with our own perspectives. Then, if the story is later told by the people we told the story to, it is tinted further. Hearsay. Second hand news.
I like getting things first hand, not because I doubt the authenticity of the information, but because I like to know how things affected people. You can tell me that your grandmother was a nurse in WWII, but I'd rather have your grandmother tell me about what it was like being a nurse in WWII. See, to me, whether or not she actually was a nurse isn't really important. Her life experience, either as a nurse, or as someone who wants people to think that she was a nurse is what I value. What I value is hearing what matters to other people. What I value is hearing what other people want me to preserve for them. Even if someone is a compulsive liar, the lie they create tells me something about who they are. It tells me about what they think is important. It tells me about what they think I will consider to be important.
I suppose that's one of the reasons I write. I don't really like people telling their version of my experiences. Even people who were there when things happened don't know what it was like to be me at the time... how I saw things... what was going on in my head. Their memory of the event is tinted with their own priorities, and their telling influenced by their own motives.
So, the woman took a lot with her. Things like what it was really like, from her perspective, in the 1800's... how she viewed her society at the time and what was important to remember about that time. It's now up to us to use our imaginations... to fill in the blanks... to make up "the truth".
"We're good at that.", Jesus said.
Much respect, BJK.
Wanted to take my hat off to Billie Jean King, who was honored tonight at the US Open. Thank you... for everything.
Writer's Brain
I'm really tired, and have no idea why I chose to get out of bed. I think that when I start blogging in my head that it's time to get up though, so I'm sure that was part of my decision.
A lot of times, in the past, I've heard people say, "Just stop thinking about it!" and I found it difficult not to slap them. Yeah. Stop thinking about it. Must be nice to have those types of powers. ...as if I can choose what I can or cannot think about. Yeah. I'm doing this to myself. Thank you very much MOM.
Anyway... when I was in Neurodude's office and I was getting riled while mentioning the whole ER experience, he just told me not to talk about it, because it'd make me get upset. He didn't speak at me or down to me either, it came off more as genuine concern. Whether he was more concerned about me, or about the additional half hour it'd keep him stuck dealing with me, I don't know. It seemed to work though. I stopped, mid-sentence, and I was able to get myself away from the building rage.
I do it to myself while alone too. I spend a lot of time talking to myself, and sometimes I'll go on for hours... riling myself up, talking myself down, and yes... always having the last word.
It occurred to me early this morning, while trying to get to sleep, that if I changed the words "talking about" to "writing about", it might have the same effect. The way I write, it's a lot like the way I talk. It taps into what I'm feeling.... comes from the same place. So, after that, when my head would start going, I'd just say to myself, "Stop blogging."
I think it might have worked. I did drift off to sleep pretty soon after that. I'll have to try it again... if I can manage to "put the pencil down" long enough.
walkies
I was able to sleep (yes, I did say "sleep") without the A/C on, early this morning. Pretty sure that I got in a couple of good naps. It's tough to know what to call "sleep" and what to call a "nap". Without some sort of medication, I never sleep more than 3 hours in a row. Lately though, even 3 hours is a very rare occurrence. I guess that I decide what to actually call "sleep" by judging the quality of it.
I'm glad that the weather is changing. I really despise the heat... and it really despises me. The only down side to the cold season is that things get a lot louder. No leaves to absorb the sounds... and no hum of the A/C to drown them out. I used to really like the winter time when I was living in the city. Streets are safer, and I really love the snow. I'm a walker... always have been. I can't drive... never could. It's more difficult now though, because of the MS monster. It's not just that my legs often buckle out of the blue, but my balance is way off. A lot of people with MS call it "the drunk walk". Shoot... I never had these problems just from drinking.
I still walk, whenever I can. Outside, Nessie helps me out. Inside she just hangs out and chats with Harold. It's very rare that I need Nessie when I'm in my apartment, and I walk (pace) inside my apartment just about every day. I suppose that it has to do with knowing that if I fall, there's a carpet there to help me out. Outside, between the additional stimuli and the concrete... it's just way too risky. I don't go outside much though. Maybe twice a week or so, either to go, with RavensWings' help, to the store or to take out the trash and bring in the mail. It's very rare that I will feel good enough (or crazy enough) to risk a real walk anywhere. It's also very rare that I have it in me to even shower, dress, and get out the door. If I manage it, I always have to recover from actually doing it. SirThinksalot makes sure of that.
Speaking of SirThinksalot, he's telling me that I need to get back into bed soon. Darn pest.
Something to chew on
I just wanted to post this link to one of my old entries, in an attempt to shine some light on my perspective concerning the article I was bitching about yesterday and this morning.
To me, everything is all about sex, gender, and sexuality.
Not hurling shit
There's a lot I could write about right now, but I'm doing what I know I shouldn't be doing... stopping myself from writing for fear of hurting people's feelings.
I've been online for about an hour now, and the only thing that I've noticed is that I went from feeling pretty ok to shaking with rage, without even making it past dealing with my blog, and my blog is only the third site I deal with every morning.
It wasn't any one specific comment (I deleted them) or tmail (I ignored it) that did it. I'm sure that it's my own issues which are responsible. I'm not going to blame my mother for my issues, but I can say that if someone is acting like her, my first instinct is to "strike". Sometimes, before I strike, I can manage to get myself to the place where I can walk away. Sometimes I cannot.
I have problems with "impulse control". I do my best. That's all I can do.
Got brains?
Read an article about how teenage girls are so much more likely to "self injure" than teenage boys.
Yeah, way to promote the stereo-typification of the "sexes"... and to further label anyone feminine as "weak and pathetic".
Girls are "hysterical"... "crazy"... and so boys are more sane.
Amazing how those who write these things, and put these ideas of theirs into statistics are supposedly more intelligent than everyone else, but yet they can be so obviously just plain fucking stupid.
Yeah... teenagers who "self-injure" are more often already assigned the label of "girl" than they are of "boy". Why? Ummmmm... anyone here ever play (or even watch) football?
If society encouraged girls to play football, and even rewarded them for doing so, I dare say those numbers would shift a bit. Too, if they saw playing football (to say nothing of wrestling, boxing, and the rest of the sports boys are encouraged to play and rewarded for playing) as "self injury", (which in truth it is, because playing a sport like that will more than likely cause some degree of pain) they'd shift as well.
Yeah... girls can play rough sports if they want to... yeah, as long as they don't mind being called a "Dyke".
People suck.
Think I'll keep him.
So, the appointment went ok, I guess. Right now, I'm really, really tired though. Long day.
In Neurodude's opinion, I have PRMS. (Although he did say "Relapsing Progressive MS" before he corrected himself, after I asked.) He's just Neurodude though... aHeM!!! Nothing to scribble on the chart over.
Have a couple of new drugs to try... actually, one retro-old and one brand spankin' new... but that would take hours to go into. One is to try for sleep, the other to take if I get slammed by Mr. Fuck You Up The Ass Sideways Hiccup again.
He's doing his job. Pushing the meds he's supposed to push. Poor Neurodude... he's trying so hard for the Copaxone company and to make his superiors happy. "A" for effort.
He mentioned a clinical trial for a new chemo thingee. I passed. Told him I'd wait until something so bad happened that I would gladly risk the side effects of the medication being worse than the actual symptoms. The bit of a quality life I have left, albeit seemingly pathetic at times, I want to hang onto, for as long as I can.
He really is a good doctor. I really hope that he can somehow manage to hang onto the "DUDE" part of "Neurodude". It's what makes him a good doctor, in my book. I told him that today (but instead of "Dude" I used his actual first name), and I think that he actually understood... and that maybe it actually meant something to him.
Pulse 92
Off to get ready to go see Neurodude.
Wish him luck. I'm already cranky.
What I did.
Didn't do much today other than read. That's the usual I guess though. I'm not the best at being able to keep up with commenting, on my own site or on the sites of others, but I do actually read a lot of people's blogs, or journals, or diaries every day.
Maybe it's a little sad, but with my life the way it is, it's as close to human contact as I get. TV isn't real. People's lives are real, and a lot of people write really well about their own lives. Sort of makes me feel like I'm close to them, even though I know that I'm really not.
Really, seeing RavensWings for a few hours, once a week or so, is all the human contact I get. Well, that and dealing with the people at the food store, or the doc's office, when she takes me there. I guess that makes me a bit starved for "attention" pretty often.
I've had to live like this, on and off, for years now. This is the most isolated I've ever been though. In years past, I was able to go out every now and again, even if I wasn't doing too well. I can't do that now. It's not just because of the fact that the MS has me tired and hurting, it's also because it makes me do things like "black out" or act "inappropriately". Online, I can warn people if I think that I'm likely to hurl shit. Offline, it has happened that I just hurl it. Like I said, people seem not to take what I say too seriously because I "look fine". I'll warn them, but then they either think it's funny to set me off, or they do that thing... the "I'm special" thing.
You tell people that you're allergic to peanut butter, and they say, "but you haven't tried MY peanut butter!" Then they proceed to force feed you a peanut butter sandwich and storm out of your life because you had a reaction to it... with squawks of, "You don't really care about me!"
So, I stay away from people on purpose sometimes. I simply cannot risk it.
Even online I've just sort of resigned myself to, "If you care, read my blog." That's all I'm really left with. Message boards are "social", as are chats and IMs. E-mail often overwhelms me, as do PMs. If things move too fast, I get overwhelmed. If I have to tiptoe around people, I snap. On my blog, I'm free to say whatever I want, at whatever time I want or need to say it. Even my blog ends up offending a lot of people though... but I refuse to sacrifice what little "human contact" I have left.
Most of you reading this have no idea how social I used to be, or how much I worked in the past. If you could compare my life from say... 1991 to my life now? You'd see just how far I've fallen... how far down this damn disease pushed me, no matter what I tried, and no matter how hard I tried to stop it from doing so.
People mean well when they make suggestions on how to improve my life. When I'm freaking out, all many people want to do is help, so they try to come up with something that they think might help me. All that happens is that I completely flip out. To me, all that means is that they're calling me "stupid". As if I haven't spent every bit of brain power I have, since 1983, trying to come up with solutions and explanations, and ideas. No, it never fucking occured to me to try asprin for a headache... asshole.
I don't want to fear posting. I don't want to have to explain myself all the time. I don't want to argue with people. I just want to write when I can and read when I can. ...and I want to feel that when I can't, people won't take it so personally.
For fear of making people I care about feel badly, I'll push myself right over the edge. For fear of having to lie about having a beer, I'll stop myself from drinking, and drinking actually does help me a lot of the time. For fear, for fear... Yeah... you'd never even recognize me if you only "knew me when"... and it's not just the beard.
Good head, bad head.
Despite the 15 mgs of Ambien I took, all that I got was another nap session. Pain-wise, it wasn't as bad as last night, so that's a good thing, but I still really need sleep. Guess I shouldn't worry on it too much. Don't want to look too ok to Neurodude. If he makes the mistake of invalidating me as I am attempting to get help from him... damn brain... it always ends up bad for me. It's not that it's anything I seem to have any control over most times, but it is somewhat true... my brain has a mind of its own. It's the same thing as calling out "sick" from work, and then ending up SICK by the end of the day. I think it's what actors call "getting into character", but on a much more intense level. I think that it's also the same sort of process as what is called "the placebo effect". Mind over matter... matter over mind? Placebo rebellion?
What my brain does is something along the lines of, "Do not make me show you just how sick I really am!" and then proceeds to decide whether or not it is in my best interest to actually look or seem sick to other people. So, saying "You look fine to me!", in my case, can have dire consequences.
It's not just with other people either. My brain will do it to me, if I don't respect the fact that I am actually sick. It happens a lot. I "dissociate" a lot, in order to get through... push myself through things... force myself to do things because I'm so darn scared, sometimes, of being judged as being "lazy" or "uncaring". I'll push myself to the point where SirThinksalot pushes me into a wall and makes me feel like my spine is going to force its way out through the top of my head. ...forces me to get the hell into bed and take care of myself.
I'm working on it. Trying to respect what I know my own limits to be. It's difficult with other people though. Other people seem to never take my word for it when I say, "I can't.", and so SirThinksalot has to make my point for me.
I'm still pissed at him for that time he made me lose the sight in my right eye. That was so not funny.
Shut up, SirThinksalot, I don't care that you made the fucking point. It was a pretty damn scary thing to do to me. Don't fuck with my eyes, bitch!
ghostly
I guess that I have a lot to say, but I just talked with a friend for a while and let some pressure off. Helped a lot.
It was a really rough night. Things MS-wise have been very, very bad lately, and last night was probably the worst night I've had since I don't know... ever? The pain was excruciating, and it didn't let up for hours. I'm due to see Neurodude on Thursday, but being that there's really nothing he can do for me other than suggest the IVIg treatment again (provided the insurance will suddenly cover it), I don't even see the point of the appointment. Just going to the appointments takes so much out of me, that it's hardly worth it.
I have a strong desire to be drunk right now... but I don't know, maybe not really. I think that what I really want is just to be able to get some sleep. I don't know that my lesions will let me though. So far, I only managed a nap session around 10 this morning, or so.
Had an interesting thing happen while attempting to sleep last night. As I was attempting to drift off, it felt like someone slammed my head into something. It was really weird... I felt not only the impact, but I swear I actually felt my head move towards whatever it was that it had felt like it was hitting.
I'm pretty sure that this is where many, many ghost stories come from. I've had things like this happen for decades. I've even felt someone (who wasn't there) sit down on my bed, and been pushed into walls while standing alone. The brain is a pretty amazing organ.
not having fun
There are certain times when the whole pain aspect of this disease really makes me angry. I really wanted sleep... needed sleep, but no... apparently it was much more important for me to see the higher digits on the pain scale.
I hate this fucking disease.
Got kids?
ok.... so... I live (vicariously) through other people.
I have many friends (online and off) who have babies in their lives.
I'm a sucker for babies. As rabid as I can be, put me around a baby and I'm goop.
I do not have any children of my own. In the past, I've thought about it... adoption (I don't have the shtuff to produce rugrats, and science isn't there yet.), etc., but WOOOBOY I'm glad that I never "had" kids when I had those thoughts. I'd have made a REALLY crappy parent. I was WAY too self-absorbed.
All that said, I need to express my adoration of babies.... and envy of those who currently are raising them.
BABIES ROCK!
Why? Because. Because they are "golden"... "pure". They don't have that social conditioning yet... the world is their oyster, and they're REALLY FUCKING HUNGRY.
Babies RULE because every action of theirs is based on "Does it make me feel good?"
That's why I LOVE babies.
I'll be one, to some extent, forever... and I'm very happy about that.
The Morning Snarl
Animated
After much thought and careful research, it is my conclusion that there are only 5 generations of people living in America today.
We are now living in "The Animated Cartoon Age".
Henceforth, all Americans will be tattooed with an image of...
Felix the Cat - if they were born before 1928 (Everyone who survived the "Spanish Flu" is in here. Sorry about the needles.)
Mickey Mouse - if they were born in 1928 through 1949 (Many "Baby Boomers" are in here. It's ok, everyone else is getting them too.)
Bugs Bunny - if they were born in 1950 through 1969 (Pretty sure that most of "Generation X" is in here. Don't worry, you're the smallest generation in number. You can still feel unique.)
a Teenage Mutant Ninja Turtle - if they were born in 1970 through 1996 (Most of the "Echo-Boomers" are in here. Yes, you can choose the Turtle you want to show who you're allied with.)
Sponge Bob Square Pants - if they were born in 1997 or any year after that. (Yes, mommy can come with.)
No, I'm not paying for it. What do you think you pay taxes for? Supporting the Arts is in the budget!
As a final note, because there was a fierce debate about the cut off year from Mickey to Bugs, which led to a fear of a civil war between the Baby Boomers and Generation X, it was decided that the cut off mark would be after 1949, as per Bozo the Clown's suggestion.
8/21 p.s. - Bozo wishes me to pass on a direction to everyone to stop sending him death threats. As well, all four Ninja Turtles are now very frightened by what seems to be a plot by a few members of Generation X, to turn them into a version of Snapper Soup. I would ask that these Turtles not be harmed, as the "echo boomers" are the largest generation in number, and they love these Turtles (for some odd reason). I do not want to be a part of what surely will turn into the second American Civil War.
Cartoon Generations
I think that, instead of naming our societal "generations" with such boring titles as "The Baby Boomers" and "Generation X", we should start using cartoons.
There was a "Mickey Mouse" generation... a "Bugs Bunny" generation... a "Ninja Turtle" generation... a "Sponge Bob" generation...
There's always one specific kids cartoon show that just about every last kid with access to a TV (or in the past, the movies) seems to have seen, and it's aired for forever and a day. It's stops being THE cartoon when the next show comes along, trumps it, and then continues to be THE cartoon for... forever and a day.
I have no clue what my cartoon is. I want to say that I'm a "Bugs Bunny", but I'm not sure. I don't think that I count "South Park" as a generation, because it was not a "kids" cartoon... and besides, I watched it as an adult. I'm not a "Ninja Turtle". I don't think that I've ever seen an episode, actually. That's my brother's generation. Right now, I think we're still in "Sponge Bob", but I don't know for sure. These things take time to determine.
I don't know if there was a generation between the Bunnys and the Turtles. No cartoon comes to mind though, so I guess that says something. (hmmm... "The Tortise and the Hare". There's something to think on.) Mouse, Rabbit, Turtle, Sponge? Anything between Turtle and Sponge? Nothing comes to mind, but then it's just now that the Turtles are "coming of age".
I don't know if it's just an American thing. I don't have the right kind of societal or cultural knowledge about the rest of the world, I suppose. If it is, then I suppose it says a lot about us Americans. ...or maybe it just says a lot about how I view my own society and culture.
Random thoughts
Head is not doing well at all. Just having to jot down random thoughts, so...
Intelligence is yes, no, maybe... continuum, not yes or no. Computers are not intelligent, no matter how quickly they process information, or how much information they store. Choice, based on programmed consequence is not a sign of intelligence. The ability to apply a consequence and action to another unrelated situation, and effectively attain a desired result is. Computers are "0 or 1", "on or off", "closed or open". Living things are "intelligent" because they can grasp the concept of "maybe".
Wanting to do a thing and actually doing a thing are not the same. Neither are wanting to do a thing and having the ability to do that thing.
oooh! one more!
I am NOT ungrateful. I'm just CRANKY!
(they just keep coming)
I did not ruin your life. YOU ruined your life. Your choice to concentrate on your own momentary happiness rather than focusing on how toxic I might become if that's what your focus was on, ruined your life.
I'm just like any other drug.
Blogs I Read
These are a few of the blogs I read (and yes, I do actually read them) whose authors have given me permission to link from my blog to theirs. If you're a logged in tblog user, you can just visit my tfriends page for more.
(I've shared air with these people.)
(I would like to share air with these people.)
(This entry will be continually updated.)
damn Energizer Bunny
I think that what people don't realize about all of this (because, DUH! I never mentioned it.) is that a lot of my anger about not being able to be around my nephew was twice as intense as any anger I'd ever experienced. Probably still is, at heart. The reason why? My nephew was the SECOND child-family member I'd had ripped from my life. The first was my brother.
My step-father threatened me, when I was 15, that if I EVER came in contact with HIS SON, that he'd KILL ME.
From that day forward, I hung WAY back. I did my best to let my brother know that I loved him... that I'd always be there if he needed me...
To this day, his father considers me a "bad influence". Stupid fuck, you turned me into James fucking Dean!
My brother, my nephew, and I are all about the same height. 5' 5" or so. I hope to pass my REALLY BIG FUCKING STICK down to both of them, just in case they can't find ones of their own. I don't think that they'll have too much of a problem sharing.
hasn't stopped yet
(continued from previous entry and its comments)
I haven't decided whether or not to contact my nephew. All he knows about me comes from his parents. In his opinion, and to his knowledge, he "doesn't like me".
I re-met him when he was very young, maybe 8. Before that I'd only seen him as a baby, but even then he wouldn't leave my side for an instant. After that point, I was "not allowed" to have any contact with him, or my sister. This continued until my sister left her boyfriend, and then I was "allowed" to spend time with my sister.
I re-met him because once, he was with my sister on the weekend, and I had arranged to see my sister that weekend. His father found out that I'd spent time with him, and that he liked me. He immediately took him to a Psychiatrist to make sure that being around me had not permanently damaged him.
The result was that all my nephew knows to say is "I met him. I didn't like him." if he's asked about me.
Admitting that he actually liked me might cost him too much. I think that even admitting it to himself might.
I don't want to "hunt him down" to talk with him. I do not want to seem like they have probably made me out to be to him... some sort of predatory freak.
I'm sort of damned either way. If I reach out, he might back away. If I don't, he'll think that I don't care, and nothing could be further from the truth. I loved that little kid from the second I met him... and never stopped.
*shrugs* It's tough to know what to do.
Now I'm sitting here shaking and doing inventory about when I saw my nephew. I know I saw him at least once when he was a toddler. Then again that time in my sister's dorm room... I think that my mother was there and we all went out for lunch somewhere. I'm almost positive that was in '95, although not completely sure, but that would have made him about about 7 or 8 at the time. 9 at the most. Since then, I haven't seen him. I almost saw him a few years ago. I was at my sister's and his father was dropping him off. I was being a bitch about the whole thing and refusing to leave just because he was going to be there.
My brother and I stayed out of view, not wanting to set off my sister's ex when his car pulled up. My sister went outside and told her ex that we were there. The ex all but threw my nephew back into the car and sped off.
My fault, right?
I'm shaking like a leaf right now. He does exist online, it's not like I haven't seen pictures of him or that I haven't made every effort to somehow keep up with what was going on in his life. It's not like I don't know how to contact him. I'm just COMPLETELY PETRIFIED to.
and this is why
It's 4:00 in the morning. I slept for a few hours... couple of naps... but now I'm too awake to even bother trying for another one. The head is racing... thinking... processing... checking records... doing math.
I spoke with my brother earlier this evening. Long conversation. I'm pretty sure that what led to our discussing "family" things was my mentioning my nephew to him. My nephew just turned 18 the other day. So, now I don't have to stay away from him. I've stayed away from him since he was very young because his father has "personal issues" with me. To his father, I'm a freak. If I'd have tried too hard to be anywhere near his son, he'd have had me arrested. I understood this. I stayed away.
As I mentioned when I started this blog, even telling the first 15 years of my life to my therapist took about two years. That would cover 1969 through 1984... my side of the story. What I could remember, and what I had remembered up until that point in 2004... what I'd previously written down... what I checked against everyone else's stories to be sure I remembered correctly... I'd told my Shrinkydink, Sarah, all of it. See, even up until 2004, I was still questioning myself... still blaming myself. Speaking to my brother tonight, I realized why I do that. People do actually blame me for things I didn't do... they make up their own stories, and project things onto me. "People" in this case being my "family".
Family aside though, others do it as well. I remember being in elementary school, fourth or fifth grade... One day, out of the blue, this girl comes up to me, grabs me by the hair, and starts slamming my head into a locker. I'm sure that I must have tried to defend myself... but I don't really recall too much about the fight other than in the end, I was crying, a big chunk of my hair was ripped out, and I just kept on asking "Why?" I couldn't understand. Why, for absolutely no reason, would some girl just attack me like that?
This girl had a reputation for getting into fights. I didn't. I'm pretty sure that I was "new" at the time. I hadn't gone to school with the majority of the kids in my school, at the time. They had already established social cliques, etc. I was an odd ball, and I was "new" because of the fire. After the fire, of course, we had to move and so my sister and I had to change schools.
So, there I was, attempting not only to explain why I was fighting to the school administration, but also trying to find out why this girl did this to me. I'm pretty sure that it was at least a day later when I finally heard why "Twinkle" did what she did.
She said that I'd called her "the "N" word".
I was completely dumbfounded. First off, I NEVER used "the "N" word". Not only did I know better, but I just didn't see the world that way. I didn't know this girl from spit. I hadn't spoken to her. I hadn't even been speaking to anyone else, so "the "N" word" could not have come out of my mouth.
It took quite a while to prove to other people that I hadn't done what she had accused me of doing. ...that she really did just attack me for the hell of it, and made up the part about me calling her that. Turns out, it was something that she often did. I wasn't lying about any of it.
I did learn a lesson that day though. Sometimes, people will accuse you of doing things you didn't do. Pay attention. Try to stay visible and have others around so that you can prove your innocence if you have to, because in all likelihood, you'll have to at some point.
The mistake I made, in much of my life, was choosing the wrong "witnesses". Often, those I thought would back me up would accuse me of doing things I hadn't done. My sister was the worst with this. ...but that is a series of stories which I'll save for another time. Right now, I'm up because of things going through my mind which have to do with my life after 15... after I left home. I'm up because my step-father still blames me for destroying his marriage to my mother. Too, I think that I'm blamed for my sister leaving, which is completely ridiculous. She left because they were splitting up, and so she came to live with "Art", her birth father and maybe mine. I'm up because one thing led to another in my brain, and as usual, I started double checking things in my mind.
My nephew just turned 18. That would mean that my sister got pregnant with him around November of 1987.
I had just turned 18 then. I had just started working for the IRS, having graduated High School, officially, in August of 1987. My sister was rarely home. She was all but living with her boyfriend. Her boyfriend didn't come over a lot. There was some sort of drama involving his ex and guns and some such scary business which I can't really recall and probably mix up with crap that was going on with Art's new girlfriend's ex... but the absolute truth is that he rarely came around the apartment. At the time, my sister would have been 17 years old. Yes, that does open yet another can of worms, being that her boyfriend was, and still is, quite a bit older than my sister... but again, I'm not getting into that right now.
I had nothing to do with why my sister left home. If anyone had anything to do with it other than my mother and step-father, it was probably my sister's boyfriend. If not that boyfriend, then her previous one. What I think I was doing about the time my sister "left" home was being released from the loony-bin, finishing High school, and getting a job. How the FUCK could it have been MY FAULT that my sister left?
I keep thinking... keep checking my old journals and writing... When the hell was it exactly that my sister did leave? What year was it? It was WAY after I left... at least a year. From what I can recall, my mother and step-father were splitting up. I was living with Art or I was either at the squat, or locked up. My sister came to live with us, because that was just how it was going down. My mother was taking my brother to live with her, my step-father was getting his own place, and my sister was coming to live with us.
I remember Art flipping out because he kept wondering when my sister's stuff, and whatever might have been left of mine was coming. There WAS NO STUFF. "STUFF" consisted of one twin bed. The other twin bed technically belonged to my step-father. We had one chest of drawers between us, but I'm pretty sure that my mother took that, because the other furniture technically belonged to my step-father too. Anything that was hers was lost in the fire.
He was INFURIATED. He'd been paying support! Where the FUCK did all the money go?!?!?!?!
ummm... my brother's college fund? (You know, the one he never saw a cent of!)
Still... having trouble with the year... I want to say it was 1986. I remember being at my mother's new apartment (Yeah bro, the one where you slept in the closet.) and having left my ring there. The ring actually belonged to my girlfriend... so it had to be either '86 or '87.
Fuck... ok... Da. was '85. Dr. was the end of '85 through... who the fuck knows, when I left for KY. With Da., I was sleeping in the living room of the one bedroom place. With Dr. I had a bedroom. When my sister moved in, we took turns with the room, the other sleeping in the living room. I'm pretty sure I took the room first, but I don't know if I'd taken the room because there was only me, or if my sister was already there when Art moved into the 2 bedroom place.
ok... it was Feb. of '86, that was the first time I "slept with" Dr. She slept over. Was my sister there then?
I left Art's during the '86 summer-flare. Went back to the squat. I'd dropped out of school in May of '86. I was working... doing telephone surveys. Did my sister move in before I left in '86 or after I was released from the tute in '87?
Wait... BUNNY.. I had Bunny (Yes, there actually was a real LIVE "Bunny".) Dr. got me Bunny in... '87? I was in the living room then, so my sister must have been in the bedroom. I'm pretty sure that Dr. was home from college... maybe Spring Break? So, that means that my sister was there in '87.
ok, so... (it's now 5:45am) Sometime between the end of '85 and beginning of '87, my sister moved in.
FUCK! WAIT! CINDER BLOCKS!!! I remember moving from the one bedroom to the two bedroom (Laughing as I write this) because I could swear that it was winter time... that there was ice on the ground... on the parking lot. We were carrying cinder blocks which were being used as shelves. I could swear that we were cracking the fuck up because my sister was not doing too well carrying them. She could have just been there helping though... and there are other stories about my adventures on the icy parking lot.
I took the room first. The bed came later. I slept on the floor. When did the bed arrive? I remember when it left because one day, I came home from work, and the bed was gone. My sister took it to her boyfriend's. Sucked to be me that day. Pretty sure that was in '87 or '88 though.
I'm not getting anywhere with this.
ok... back to the the first time with Dr. Was my sister living there then? I want to say "no". When did I move to the living room? Was it after I got out of the tute? Did my sister move in while I was tuted? Did I just end up there because while I was gone, my sister automatically took the room?
It was Sept. of '86 when they locked me up. My mother already had her apartment, which would mean that my sister was already with Art. ok... that brings it down to between late '85 and July of '86. In that time, I was in school, then working in May because I'd dropped out. Did the bed leave in '86? Was it after coming home from the telephone job? Couldn't have been... that would have made my sister 15 years old.
Still, all I was doing in those 9 months or so was going to school, then working. What the fuck could I have done to have been responsible for my sister leaving, to say nothing of the fact that he accuses me of destroying his marriage? Pretty fucking powerful for a 16 year old!
It's now after 6am. I've been typing this for more than two hours now. I couldn't not type it... write it... think about it... It will be hours before I will be able to stop thinking about it... stop trying to figure it out... stop trying to prove to myself that IT WASN'T MY FAULT!!!!!!
...and this, my friends, is a good part of the reason why I'm legally "disabled".
...and with that thought, I almost started crying.
Sucks to be me.
life in lesionland
Rough night. Couldn't sleep. Pain, twitching, needing to piss every 10 minutes, all around MS crap. Napped a little this morning, but I can't call it sleep.
The tv was good though. Got to see two episodes of House which I'd not seen before, and watched this really incredible movie on IFC called "Quitting". My eyes struggled with the subtitles a bit, but the film was so well made that even without the subtitles I'd have enjoyed watching it.
Talked with Bunny for a while. I think that he gets depressed sometimes... worries about what will happen to him if I'm ever not around. It's tough to reassure him, especially right after one of my little "I can't take it anymore!" episodes. It's not that he doesn't understand, if anyone does, he does, but I think that the whole thing just makes him feel sad. I think that maybe he thinks that without me, he wouldn't even exist. Silly rabbit.
home it is
So, as of today, I've been living here, in this apartment, for a year. It's not so much that it's unusual for me to live in one place for so long, although it is unusual, but it's more the fact that I haven't left that is more so. I don't blame MS for that, but instead am thankful for the diagnosis. Knowing what is wrong allows me to give myself license to slow the hell down, without beating myself up too severely about it. It encourages me to question myself... to work twice as hard on controlling my impulses.
I know that I have MS, so I'm much less likely to mysteriously wake up there one day wondering what the hell happened to my life.
Thank all of you for helping me make it through this past year. With any luck, I can thank y'all again in another year too.
Thanks for giving me a reason to try.
and then
Spent some time talking with RavensWings after today's trip to the food store. I'm glad that I have her to hang out with, for many reasons.
Among other things I found out today, I found out that although I don't think that I'm as bad as I was this past May, I actually am that bad.
Scary.
Is this for real?
Last night I had the hiccups... for an hour and a half. But hey! This morning they only lasted for about half an hour!
This is bullshit.
now
I keep having to check to see what day it is. Writing is the furthest thing from my mind, but yet I feel compelled to do so. ...and then there is still that overwhelming urge to just vanish.
Been there, done that, bled on the t-shirt. Now what?
whatever it is
I'm not too sure what to write about. I'm not dead. That's a plus to many, or so I've been told. Wish that I felt more that it actually was a "plus".
I guess this is "depression". Depression or boredom. Don't know if I really know the damn difference anymore.
because
There are days I want to disappear completely.
...and this is one of those days.
and in the end
ok, this is it. I'm through caring. I'm through dealing with about 100 blogs a day, the message boards, myspace, livejournal, classmates, "family", the unanswered phone calls of many. I'm through with all of it.
A couple of nights ago, all I REALLY needed was HELP... just an ear... just a reason to not off myself. As much as I've put into this reality... as pathetic as this reality might be, all I got was treated like just another teenaged twit.
So, now I'll clean up my mess.
Sorry that I ever tried to give a shit. All it ended up getting me was hurt even worse than I was hurting before this whole Internet thing.
because
in truth
If I could be anywhere, and money was not an issue...
I'd be at a sushi restaurant with RavensWings, talking up a storm with her, and eating through about $100 worth of raw fish.
I hate that that's a lot to want.
tblog past
It was an odd night. I eventually had to take meds to knock myself out. I sort of remember getting steamed on "tblurt" about a few things going on. I'm always steamed about things going on at tblog though. This isn't the same site I joined back in April 2004, and the "changes" made to the site over this last year have only served to make the site even worse than it once was.
...and so yet again, I contemplate "jumping ship".
This really was one of the best blog sites on the net. Now?
I don't know. Maybe I really am just too old for this shit.
Don't forget
There are many reasons why I write, but I'm starting to realize why it is I've become so anal about keeping what I write. Whether it's preserving my online writing, or my journals, or anything else... it's all the same. The main reason why I hang onto my own words is because they're the only words I can really trust to tell me how it was I saw things... how I experienced things in the past.
People tend to distort things. It's the nature of memory. Even I do it. Aside from the things I just plain forget, I tend to blur things together... forget details... recreate things in the most palatable form for myself to taste later. My writing keeps me in check.
One of my brain games yesterday was asking myself, "If you had to pick one year to turn into "Groundhog Year", that is, to be forced to repeat that year over and over again, which year would you choose?"
Well, I immediately canceled out every year before 1995. I'd sooner die than repeat any of them in full. One by one though, I ended up canceling out every year after that as well, for one reason or another. There was no "best year". I did my best every year, and every year there was at least one traumatizing event or situation I couldn't have avoided.
So, why do I "hang onto my past"? Wouldn't it be easier, or less painful to just to forget the various hells that I've been through? The embarrassing moments? The times I put my foot in my mouth? The idiotic things I said? Wouldn't it be easier to delete my archives than to explain them? Wouldn't it be less painful to create a fluffy truth to hang onto? Wouldn't it make me happier to just idealize myself to myself and everyone else?
Maybe, but even the thought of being a person like that makes me want to spit at the mirror.
I hope never to insult myself by denying who I was. "Who I am" today will be "who I was" tomorrow. I hope to always respect myself; past, present, or future.
...and I hope never to be stupid enough to willfully forget my past. Those who forget the past are doomed to repeat it. Think I'll pass on that.
At the moment
Nothing too nice is wanting to come out onto this page.
I don't know whether this is a courtesy warning, an explanation, or a plain old fashioned excuse.
I also don't know that I have the energy to figure it out.
Divisions
I sit and watch... sit and read... people's lives are falling to shit. The haves walk all over the have-nots for fear of becoming one of them. The have-nots take it out on one another, blind with frustration. People paralyzed by their rules and needs... tormented by their wants.
...and there's nothing I can do but blog about it.
Uphill battle
Damn legs keep buckling. Guess that's what I get for attempting to do something today. Had to get the trash out.
Met another neighbor on my way back into the building. Tried my best to keep my trap shut while she told me about her friend's daughter who was doing so much worse than me because she was in a chair... that I "looked fine".
I will not kill.
I will not kill.
I will not kill.
The home of the petrified.
One of the things I do with my brain, in order to keep myself going, is to play the "Lottery Fantasy" game. I've always done it, ever since I could play the lottery. The way I see it, when I spend a dollar on a lottery ticket, I'm not spending a dollar thinking that I actually will win. I know the odds of winning, and combined with my general luck in life, there's probably no way in hell that I'll ever win. So, what I do is spend a dollar for a really good fantasy. Lately though, the fantasies haven't been all too good. Like I said, I've come to realize that money will not really change my life all too much.
So, yesterday I started the "this is beyond a fantasy" fantasy game. I asked myself, "what if..." ...what if you were guaranteed another 30 years, no further disease progression, and no risk of losing your current income or assistance? How would that change your life? What would you do? What could you do?
I think that at the root of the "prize" is the feeling of security. Feeling secure is not something I've ever really felt. Even when I came close, it did have a rather high price tag. It came with a loss of rights. Sad. The most "secure" I've ever felt was as a teenager... as an inpatient in a mental institution. I had 3 meals a day, clean sheets, health care, people to talk to, cigarettes, activities... and I felt safe somehow... like I couldn't fall too hard. ...like if I fell, someone would be there to make sure I could and would get back up.
As twisted and sad as it is that I can idealize that part of my past, I know that I'm not alone in that I can. I know others who were locked up as kids, and they feel the same way now too. Yes, twisted and sad that we live in a country that seems to pour most of its money into killing, and the rest into torturing or teasing. Land of the free, and home of the brave... right. Free to suffer? Free to prefer being locked up to enduring what people call "freedom"?
I'm not blaming any President, any political Party, or any other Country. I'm not blaming anyone's God. I'm not blaming anyone's Satan. I don't know if I'm actually blaming anyone at all.
"Tough Love" There's no such thing. Love isn't supposed to hurt. "This is for your own good!" is not something anyone should ever say, and neither is, "If you don't like it, leave!"
When will we ever get to the point of being able to say to one another, "Don't worry. I've got your back. I won't let you fall too far."? At what point will we get past the fear of being dragged down by those we judge as being "beneath" us?
At what point will playing the lottery stop making sense?
Making it through
Had to take meds to put myself out last night. So, now I can look forward to the fallout. Damn side effects.
I'm still dragging... still tired. I'm supposed to do the shot thing today at some point. (puns rule) Think I'll have to wait until I get another nap in though. Not sure. I just don't want to be struggling to see while attempting to do it.
There's an Eagles game on tv tonight. I do look forward to that. If I'm lucky, I'll be able to keep from passing out while watching it.
Today is RavensWings' birthday. It's not just that I'm lucky and grateful that she was born. I'm very happy that she was, and that she has managed to keep herself going for this long, despite a life which has been more hellish than most people's have been. I hope that somehow she has a happy birthday. She deserves at least that. You know how critical I can be, so believe me when I tell you, she is the nicest, most caring, most genuine, truly beautiful person I've ever met. ...and I've met a lot of people. I'm glad that I've had the opportunity to have her in my life.
just in case
Yeah... just in case you were wondering... OOOUUUCCCHHH!!!!!!
just because I said so.
If it takes a few beers to keep me going one more day, and you have a problem with that... say it to my face. Just have a really good life insurance policy, asshole.
heads or tails
Struggling with this whole writing thing this morning. Don't really know why. It's not that I feel depressed, or even completely apathetic, it's more along the lines of "uninspired". ...but then there's this underlying feeling of being pressured to do something.
Is it that I really am letting people down I care about; or is it that I fear that I might, no matter what I do or don't do?
Forced action is fake. Non-action suggests lack of caring. Natural action often invites feelings of insecurity... fear of rejection ...fear of judgment.
The only reason I can say "Fuck you!" with such intensity is because I actually do care. Whether it's because I care about others, or because I care about myself, doesn't really make a difference. It's all about intensity of emotion.
"Love and hate are the opposite sides of the same tossing coin." I said something to that effect, a long time ago. I'm beginning to realize though, that albeit true to some extent, even more accurate would be to reference "caring and indifference".
Whether I love or I hate, I am reacting emotionally... and so I obviously care.
"Indifference" is an emotional death I hope never to settle into.
waking up
It's gross in here. I feel slimy and itchy. Too much heat and humidity, not enough proper hygiene.
Although it depresses me that my abilities have deteriorated to this level, it often depresses me even more that my entire life revolves around my being sick. I suppose that the way I live my life says something though. If nothing else, it suggests that although I get frustrated and upset to the point of feeling "suicidal" on a daily basis, I actually do not want to torture myself... that I'm doing my best to enjoy living. Yes, my life does revolve around my being sick, but that's only because if it didn't, I wouldn't make it to the next good moment.
There's a lot in my life, and in the world in general, which makes it difficult to keep going. I've got it bad, others have it worse, some seem to have it good but yet when I look too closely at them I realize that I'd never want to be them. All I can really do is try to be a person I respect.
Taking the best care of myself that I possibly can, even if it means practically revolving my life around my disease, enables me to respect myself. Self-respect. I'm big on that, especially if self-awareness is part of the package. I strive to be perfect in my own eyes, and to feel proud of myself. I'm a very harsh judge. This I know. So, on the days I live up to my own expectations, I have really good self-esteem.
Good self-esteem. I admire that in a person.
The right to blog.
I think that if I had a few minutes to chat with myself, and a time machine of course, I'd be pretty fascinated with what I'd have to say about this whole Internet thing. I dare say that my opinions have changed about it over these last 7 years. Some of my opinions are actually the same though. The more I read, the more I can back my old self up on some of those opinions.
A few days ago, I wrote something about realizing that this really is my life. It was quite the epiphany for me. No, it had nothing to do with not knowing how to spend a million dollars. I do actually play the lottery. I've spent a million dollars in a million different ways. It was about realizing that this is it. That my life is really like this, through no fault of my own, and not able to be changed by any amount of money. Yes, a few extra dollars a month would help me eat a little better and maybe get me some furniture, but I do actually live my life doing everything I can possibly do. Money is not the issue. A million dollars would not really change my life much at all.
My old self used to view people who spent hours and hours online as completely pathetic. I was only about 1/3 right. I was wrong to be judging people. I was wrong not to realize that some people actually benefit from existing online... that it's all they really have. I was right though, in that many people use the Internet to hide from themselves and/or to avoid reality. Not that it's a bad thing, but it is actually the case with many people.
I think about what I once felt when I used to walk by the Planned Parenthood in my old neighborhood. I would get pretty riled. In my head, I just couldn't get why these people would come out to harass other people day after day. If they had so much free time, why didn't they adopt a child, if they cared so damn much? Was I right in thinking that?
Well, as I've said, "truth is transient". I don't believe in "right and wrong" in the same way many others do. I don't know that I was wrong to feel the way I did, but I can say that with time and experience, my opinions have shifted. I think that's what most people call "growth".
Those people outside the Planned Parenthood? All they're doing is what they believe to be right. Who am I to tell them what is right and wrong? Who am I to tell them what they should be focusing their energy on?
...and who am I to say what other people should be blogging about?
"Fluff" is in the eye of the beholder.
projecting
I think that the "condensing my archives" project is as finished as it will be for another month. I chose one entry per month out of my archives here, and transfered them over to the other site. That way when I ask people to "just read my blog" it's not necessarily a task that will take days.
My energy to interact with people is very limited. It's been getting worse and worse as the years go by. I know that it's difficult to understand, but it's the truth. Something as simple as replying to an e-mail will completely overload me. Phone conversations are the same way. I think that many people over the last few years, just simply gave up trying to get me on the phone. It's rare that I'm in the place to talk on the phone, because I know myself. I can speak with RavensWings on the phone every day, but she's the exception. The reason why I can manage to speak with her every day is because she's used to me "going off", and after 6 years or so talking on the phone with her, she knows what might set me off, and avoids going there.
It's not so much that I can't listen, or can't read (the online equivalent), it's that between the energy it takes to either keep my mouth shut or fingers still, and the energy it takes to actually follow what is being said, I end up feeling like my head is ready to explode. Replying to comments on my blog can completely debilitate me sometimes.. especially when I have to use a lot of energy to say something that I've said 100 times before. Some people would be annoyed by having to do that, but with me, being "annoyed" often becomes being completely "psychotic".
I do like comments, and often I do have the energy to handle them, but it's hit or miss with me. A few years back, a friend of mine got really frustrated with me and said, "You get angry if I don't say anything, but then when I do, you get upset about what I said! I can't win!" I suppose that it was true enough, but really, it wasn't that I wanted people to say more, it's that I wanted people to care more... about me, and about one another. I think that I turned to people to get what I needed from my parents, but never felt I got. A lot to put on other people.
Anyway, all that to say that the project is finally done. I'm going to have to come up with another one now. My projects help keep me out of trouble, and make me feel like I've accomplished something. I can also work on them at my own pace, and completely walk away from them without messing up anyone else's life, if I need to.
...sort of like basket weaving.
the issue
The sleep schedule is more off than usual, and the temper is quicker than usual to flare. My ears are ringing louder than they usually are, and I'm in more pain than I usually am.
The specific parts of my brain which handle the above mentioned things are being affected by active MS lesions. There is nothing more I can do to handle the symptoms than I am already doing.
I did not choose this. This disease does not involve choice. It is my choice to do my best to protect myself and others from the damage I might inflict. That is the ony choice I have in all of this.
Offline, I stay away from people as much as I can. I restrict my phone conversations. I do my best to be as self sufficient as humanly possible. Online, I restrict my social interaction, and do my best to not only explain myself but to warn people when I know things are getting bad.
What the fuck else do you want from me?
In the red
The "heat index" is supposed to be over 100° today. As long as my a/c holds out, I should be fine. I don't envy those without a/c though. A lot of places around here don't have a/c because (just a guess here) it was never hot like this in the past. This is Philly heat. It's the sort of weather that makes it necessary to have a/c standard in housing for the elderly. It's like living in a giant bowl of soup.
Started my new blood pressure medication last night. So far, I'm not dead, so I'm pretty sure I'm not allergic to it. That's a start. My pulse was down this morning, so that's a pretty good thing. It's been way too far over 100 for weeks, and that's just getting out of bed and walking to the kitchen. This morning it was about 88. Hopefully this one will work for me. As worked up as I get about things, and with the foods I like to eat for pleasure (or drink), having high blood pressure and a resting pulse of 120 is not a good thing.
My dreams were vivid. I didn't sleep a lot, but the dreams were there. Stuff about being in Philly... it was raining, and I didn't have any shoes. I was in Center City trying to get home, which apparently was around 33rd and Spring Garden. There's a lot of the dream I remember... seeing old faces, stuff involving my mother and my sister... old realities. Have the song "Can't Find My Way Home" stuck in my head now. The Swans version of it.
Think that, if I'm lucky, I'll spend a lot of time in bed watching TV today. Hopefully there'll be something on that will challenge my brain or enlighten me to some degree. I'm just feeling pretty drowsy. Could be the Atenolol, could be that I'm just tired. Either way, "bed" is on the agenda.
