My life so far, a very long rant @ 12:43 pm
Warning: this is really long, can you believe there are giant chunks of goings-on that are missing?. Also I didn't proofread it (too tired)... The colors are all goofy too, oh well, red and purple are good colors, even though I meant to keep it all purple.
Okay, this is kind of a combined blog. It’s been a very, very long time since I blogged, or journaled, or anything like that. Maybe out of laziness, but that’s really only about 5% of the problem.
I really don’t consider myself that lazy, more of a procrastinator, but not really that lazy. I don’t enjoy being lazy, I don’t enjoy stagnating, and I certainly don’t intend to do these things.
So I’ll be 31 this year, but not for several months yet, but where am I going and what am I doing, exactly?
Well if we start at the present, it hurts like hell to type, so that’s partially why I’m being slightly unoriginal by having the same blog and same journal entry. I think I’ve finally worked out a decent sort of sleep schedule, and hopefully I can keep that up.
Lately, I’m so tired and I ache all over all the time. I’ve been trying to do as much as I can without going to see a doctor (no insurance yet). Unfortunately the problems are getting worse in one form or another. Allergies, IBS, migraines, sinus headaches, eye pain, floaters, exhaustion, insomnia, no energy, RLS, and gaaahhh pain, pain like nothing I’ve felt except when I had a 3-month-long flu years ago. Head to toe muscle and joint and bone pain, muscle cramps and spasms and every joint popping and cracking every time I move. I can’t even do light stretches or other workouts without creaking and popping. I’ve re-strained my back 5 times in the past 2 years, re-injured my ankle 3 times… had screwy dental diagnoses that required expensive fixing (still needs more fixing), that I’m still paying on… Since about 10 years ago, I can’t walk or stand for long periods of time without it killing me, sitting isn’t always easy either, but sitting is sometimes easier than walking or standing. It sucks too, because I have to walk everywhere, and stand in line for things… I have to walk more than some people do (who can drive), but still walking and standing is part of everyday life usually. And I’m so sick and tired of being uncomfortable doing everyday things.
This past Saturday, I finally decided to prioritize a hair cut. I lost more than ten inches off my head, it’s layered and razor-cut with the longest layers being at the top of my collarbone and the shortest right under my cheekbones. It looks really similar to my work badge picture, one of the more fuzzy pics I took and posted here, the really faded one. I can’t seem to find a more comfortable style than the layered/razor-cut look and in the first few months after the style/cut, it behaves decently. After that, my hair grows out so fast it just gets totally unruly. Well, it’s been horrible the past 7 years anyway, since it decided to go staticky on me, and no it’s not the weather, it’s behaved in that manner through three different climates. My mom says it’s old age. Great. I don’t mind the gray hairs, I do hate the static. Not frizz, necessarily, but static. It’s so weird too, it’s slightly oily and the texture is coarse, and it’s so thick (thankfully thick). It also sheds a lot. I would never make a good criminal (not that I ever wanted to be), I’d leave so many hairs at the scene, one is bound to have a tag on it. I had this weird dream the other night that I planned on dying it again, which I haven’t done in 10 years. It probably wouldn’t hurt to dye it, it might even behave for awhile, but it’s just not where I want to concentrate my money, time, and hassle.
Okay, enough about my damn hair. :P
I’ve been trying to finalize my divorce, which seems to be going horribly. I’m probably going to have to file again for another fucking Motion. Next to dealing with the pain of the death of loved ones, I think this really tops heartaches. All I want is to get on with my life and as far as I can tell, so does my ex-hubby. But various circumstances that are out of my control get in the way and complicate everything. I’m tired of dealing with it, it hurts. Okay, I’m done talking about that, too, unless I want to drown my keyboard in stupid tears.
Since the later part of 2006 I’ve been attending classes at the AZ Center for the Blind and Visually Impaired. What a wonderful place, really, I mean I didn’t even know they existed until now. What a waste of time I’ve made of my life since then. Up until about then, I literally have lived a lie, a very big lie. No, I don’t like lying, I am horrible at lying, but I don’t know how to explain it. I don’t think anyone can truly understand what it’s like to completely deny and even defy such a huge thing. I was born legally blind, but I refused to act that way. Even my current bf, his friends, my friends, my family, people I just me, my ex-hubby, his friends, his family, all my past relationships…none of them ever really got it, or they don’t get it now. When you’ve lived your whole life like you can see as well as anyone else… well people completely misunderstand you suddenly. I never knew, never before met a single blind or severely visually impaired person. I was alone, utterly. It’s very odd here, and I’m still partially alone. It’s shitty when no one can tell you why or how, I don’t even have a diagnosis because there isn’t one. That makes it rather hard to treat. All that can be done is to treat the symptoms, so to speak, but the underlying problem is a complete enigma. So, here I’ve lived, so very hard, working harder than anyone will ever guess. No one knows how hard it is for me to watch a movie, walk across the street, or find something in my own home, or read, or see a face. I am so tired all the time, my head hurts all the time and my eyes feel bruised and sore. When your vision changes on you on a whim, with no warning, it keeps you on your toes. Sometimes, sometimes I wish the world was darkness so it wasn’t so hard for people to at least accept me. I know that sounds weird, you’d think I’d find it harder for people to accept me if I couldn’t see colors, couldn’t see just enough to know they were there, in front of me, but not quite sure if they were nodding, making a face, or trying to point something out to me, but be unable to make out the details or the direction of their glance. Is that a shadow or a pot hole? If I spend every walking moment looking down, maybe I’ll be able to focus enough to be able to figure it out before I misstep. Or maybe not. I can see large objects, but can’t see details (sometimes), and I can’t focus very well or for very long, so if whatever it was I was trying to see is gone, then it’s gone. Some things catch my attention whether I want them to or not, sometimes I miss them completely. It’s so unpredictable, I never know what I’ll be able to see or not see in any given moment. Most of the time it’s like trying to look through a thin waterfall, not completely blurred, but nothing seems like it’s standing still, and I’m working like mad to try and steady what I see, make it clear. I have limited depth perception, sometimes heights scare me, sometimes they don’t. I’ve suffered many accidents due to my poor depth perception, and suffered many ridicules. I’ve developed many ways of coping, pretending I can see just fine by doing things differently, but always, always working harder. I don’t like working harder, I’d rather work smarter. That’s basically what the Center is teaching me. It’s also introducing me to people who can’t see at all, or who have such severe visual difficulties that it affects their way of living. I hear people talk about me, you know, those people who can see, wonder why I need a cane, why I use a cane; some say I don’t need one. They aren’t me. Would those people like one day and one night of being me? Probably not. The unsure feeling of wondering how every step and every movement will turn out. No, I don’t always need it and sometimes it’s impractical to use it for some things, in some areas it’s downright dangerous to have it out or even visible. The Edge Fest concert for example, a really good idea to have it, that place was full of pot holes I couldn’t see through the overgrown grass and it was hard to differentiate changes in terrain, and during the day the crowd wasn’t so crazy. But near night time and when the crowds got tight and rowdier, someone easily could have yanked it away from me, or it could have gotten caught up in a crowd of dancing drunken revelers and someone could have gotten hurt. But I try to carry it close to me in case I do need it. Most of the time it’s a good visual to other people; if they know what it means that is. Yes, sometimes I seem just fine without it, but I’m working my ass off to compensate. I think I’ll always have to deal with those who sneer and mutter under their breaths about how I ‘can see just fine’ when they don’t realize that what I can’t see is much greater. I have reading and distance glasses and a magnifier and a monocular. The reading glasses only work for up close and not for every reading task. The distance glasses only work sometimes, and while they do sometimes un-fuzz the edges of large objects, that’s about all they do. I’m pretty happy though, honestly, because the Low Vision Specialist at the Center was able to provide me with a much more effective prescription for both types of glasses and the magnifier. I’d be lost without any of them, although I can’t or don’t always use them for everything. Sometimes I can ‘see’ because I have positions of things memorized or the length of something, or both clues combined. Like my cell phone for example, I have certain parts of its menus memorized or the positon and length of certain words in the menus so that I can ‘guess’ usually what it is is I’m reading. I use pictures and ring tones to personalize people’s phone numbers in my contact list. No, without my magnifier I can’t see the photos, but I can recognize the pattern of colors. I also do a lot of things like adjust font, resolution, contrast, etc., on whatever it is I’m using, like my computer. I’ve recently learned a lot about assistive technology that will help me work smarter and not harder, but it’s very expensive and on my small income, I’m going to need help acquiring any of it. That’s another thing I’m really lucky for in a weird way. My visual impairment is severe enough that I qualify for certain assistance, by law. The Center is one place where I can get that assistance. Whenever I have a few extra dollars, I donate them to the Center, because they do so much for me and I see they do so much for so many others in my similar position. For various reasons I had to leave my last job and had to go onto Disability. No, I don’t plan on being on it forever, and no I don’t enjoy the stigma it seems to carry with it. I am rightfully and legally entitled to my disability money both for being legally blind and because I have worked a lot in the past. A lot of the reasons I had to leave my last job are not solved yet but a good number of them are being worked on, currently. It’s a long, long haul and it’s sometimes very lonely. I’ll be going into a Vocational Rehabilitation program very shortly, I was accepted awhile back and have been on a waiting list since approximately Sept. 2007. I’ll be starting in February, a pretty good way to start the new year. I’m nervous and excited. Basically the program I’m starting helps those who are legally blind or have no useable sight at all find and maintain competitive employment, and it helps them with whatever aspects need to be covered in order to help them be as successful as possible. So that covers daily living needs as well as job training, assistive technology, resume-writing, etc. Although the nystagmus I have affects my vision a lot, and I have other issues affecting my vision too, I can consistently use magnification to see, and this includes microscopes. I have a couple meetings to attend before I officially start the program, but so far I have a few thoughts in mind. I want to return to school and finish college. I want to go into the medical field or computers or a combination of both. I’m very discouraged by the turn my body and health have taken in the past several years, which is going to affect some of my goals, but I have no choice but to deal with it. I mean right now I have no medical insurance and I make too much money to qualify for help in that aspect, but I don’t make enough to pay for private insurance. Again, hopefully a good job (career!) will help me with that. I qualify for Medicare in May 2008, so hopefully I can wait that long.
A few month’s back I added playlists to my myspace page to illustrate my musical tastes. They are far from being comprehensive, mostly because the links to the songs change or are deleted and so either the song isn’t available anymore for placement on the list, or I have to find the song again. Most of the time, the songs just no longer exist for placement. I also have more playlists on the website that hosts them. The amount of songs missing is huge and keeps growing, I can’t keep up with all the songs I can’t find any longer to place in the lists. I’ve got very diverse tastes though, running the gamut of most of the musical genres. All the music I love because in some way or another it represents my thoughts or feelings, and describes me in some way that I can’t quite put into words. Sometimes the songs show my borad and open-minded sense of humor, or my poignancy, or my melodrama, or so many other things. So, hope you enjoy them.
I’ve been on Altar Aeon a lot recently, but in shifts, it’s a lot of intense typing and sometimes the faster you type, the better, even if you have aliases or triggers set up. I’ve been inconsistently trying to build. It’s going slow and agonizingly frustrating, but always fun and interesting. These kinds of games have never been my forte and it’s really hard for me to read (but the creator, Dentin, has added wonderful code on the game that makes it easier for blind or visually impaired players who use screen readers to play the game very effectively). As it is, visually speaking, it’s only text, but it’s fast-moving text and I can only see about 1/5 of what’s going on at any given time, and even that 1/5 I can’t see completely or keep up with, but I seem to manage. It’s an interesting study on society; there’s a variety of cultures and ages and generations even… You find such a huge mish-mash of types of people, it boggles the mind. People there make friends and enemies and tentative acquaintances. It’s one of my biggest hobbies though, and I’d love to see the game stay around for as long as possible.
I’ve been listening to lots of books on tape from the Braille and Talking Book Library (volunteers read the books, and they are really good at it, like they could be pros), and it’s not a complete library or anything but there’s so much that they do have and they are always adding more. It makes reading a lot easier for me, and thus more enjoyable. Still keeping up on some TV shows but always behind on catching up on movies I want to see.
My best friend from years ago moved back to
Well, I think I’ll leave out most of the abnormal, possibly socially unacceptable, mentally and emotionally disturbed parts of my life thus far. No one wants to know how crazy I am, and neither do I. I’m reminded of it too often.
Oh, and I dunno what else I have to say right now, my wrists hurt a lot still, but I have some bits and pieces of stuff I wrote out I’ll copy and paste here. And as always, I tend to date/timestamp everything. :P
Full of blind lightning
Wind that rends the sky apart
And silent thunder
I burn in the depths of my fiery heart
Yet shiver in its blanket of bitter cold
Shaken by the loud, silent thunder
Always the screaming wind rends my
that are colored like bruises; blue or yellow, or purple or black
Yet still too brilliant to look at long
Even in soft, threatening cloud cover
awash with my tears
that rain down to stab the earth,
Fertile with love and pain and too much grief
Blind lightning illuminates what I do not wish to see,
Piercing with frightening light
And turning my watered-down soul prismatic
as it rides on unsteady wings, lost within the storm
and then my world is rent apart
Into irreconcilable pieces
Not Good Enough
Not pretty enough
Not smart enough
Not funny enough
Not strong enough
(these are just bits and pieces of thought)
buffeted by the storm
for just a glimpse of the rainbow
(just bits and pieces of thought)
bathed in moonlight
cast in darkness