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Currently (2023) my most updated blog is everlasing.

Spaz is a useful side blog for sorting other stuff out.

Thursday, August 30, 2012

walking in the air

 
 
This might be a weird post. It's part of something way bigger that won't fit into a blog, but it seems to want to come spilling out.
 
I have never not had a sad. I can't remember being happy through most of my life. I have plenty of joyful memories and remember laughing a lot as a child, and I have some pretty good memories of being all grown up, too, although those are fewer and further between, but the word 'happy' eludes me.
 
I don't have a terrible life, at least I don't think so until I tell other people and they seem shocked. I go through bad things like everyone else does. I think it's mostly relative, I can't take any of it personally. I mean, everyone has something, right? Illness, injury, and death happen to people all around them, if not themselves. And even if they don't, even if they seem to have charmed 'happy' lives, you know it's coming. Sooner or later, we all hit that wall and croak off. How gracefully we do it is up to us. Some go out kicking and screaming, some go out apologizing over how difficult a time everyone else is having watching them suffer or taking care of them.
 
I grew up with death, on a farm. My first pet wound up in a frying pan. She was a black and white rabbit named Freckles. I had no warning. I came home from first grade one day, the skin was hanging up in the garage, mom was frying body parts, and we ate her. The fact that I can still remember it so vividly probably betrays the shock I kept hidden for many, many years. We progressed on from there to eating numerous other pets, animals we raised from babies, mostly lambs and chickens. Not only did I eat them, I helped kill them and take their bodies apart. I don't recall ever crying over it, although I kind of remember lobbying for the life of one particular lamb that I bottle fed and grew very attached to. Likewise, when my puppy got hit by a school bus, I didn't cry or carry on. Dad had already killed puppies with a shovel and buried them still whimpering, so the idea that my puppy died of a more 'natural' accident wasn't that upsetting to me.
 
I liked a little boy all through grade school. I never admitted it to anyone, but I sat by him at lunch for a couple of years and played with him on the playground. He got hit in the head with a baseball bat in the 5th grade. I didn't see it because I went back to class early and was already in my chair when the other kids filtered in crying. One little girl got very angry with me for not reacting to the news. What no one noticed was that I shut down and all but stopped talking the rest of the year. He never came back to class, and I didn't know if he died until I saw him a few years later. I'd already seen puppies' brains bashed with a shovel, I could imagine that little boy's brain smashed out, even though it wasn't, but I believed it because the other kids said it. I didn't realize at the time that I was the only one in class who had ever really seen brains bashed out. I was in my 30's before that memory really hit me and I cried.
 
 
I'm not going to relive everything, but you know how it goes, you eventually lose a friend to something horrible, and then a family member, more pets, sometimes a child, usually a parent. The older you get, the more people you know who have died, and the longer you go, the more often it keeps happening. By the time you hit your 40's it seems like all the big conversations are about who just died. My husband Scott actually keeps track of who all has died from his high school graduating class. Over half of them were gone by the time he hit 50.
 
I've spent most of my adult life facing my own death. Between a nasty car accident, heart surgery, a couple of scary illnesses, and other ongoing stuff, I accepted a long time ago I'm just plain lucky to be here. I prayed every day in my 30's to be allowed to live along enough to see my kids grow up. Well, they are grown up, and I'm still here. In the meantime, other people keep dying. My mom, one of my nieces, friends of friends, other relatives. Others seem like they will never die, living long demanding lives and pressuring loved ones with all kinds of dysfunctional guilt every time the terror hits them that it might be their turn. After you watch young people go through death, it's hard to feel empathetic for terrified old people.
 
I think the hardest part is the holes we live with when others leave before we do. My whole life has been full of holes. I never lost a parent or sibling as a child, so I can't imagine having grown up like that, but there were holes galore. I do know that every death that has ever happened around me, animal or person, has affected me, even though I never let anyone see it. People say I'm strong, incredibly so, but I'm not sure what strong is supposed to be. I've held a dying person. I've cleaned up after deaths. I've talked people through impending deaths far into the nights before they happened. I have also saved a person's life because I was so familiar with blood and scary stuff that I was able to do what was necessary without freezing up with emotion. Growing up on a farm, you don't just kill animals to eat them, you also save their lives when things go bad.
 
 
I can't kill any more. I keep a few hens around, and for the most part they make it to about 3 years old and just go, but once in awhile an old hen hangs on and on. I had a hen for 6 years who lived through all kinds of stuff, from illness to foxes, from having the living daylights beaten out of her for a week by a new psychotic hen to crazy dog attacks. That hen was *tough*. And alone. She outlived the entire flock. She spent a year by herself and grew too depressed to eat, or even come out of her house. Every day I picked her up out of her house and set a plate on the ground for her and stood by her while she ate. Then I walked around the yard with her and sat in a chair while she dusted. I tossed corn cobs down to her from the deck. Scott scooped her up from under a tree every night after work and carried her back to her house.
 
 



One day I looked out in the yard and saw her laying under a little tree looking up at the sky. Chickens usually freeze or duck and run when they see hawks fly over, they're very sensitive to the slightest shadow, but this time she just laid there and watched, uncaring how exposed she was. I don't think she had lost her will to live, but something changed. I knew she was ready, and she was really thinking about that hawk. And while she watched that hawk way up on the sky, a song popped into my head.

 
 



That chicken saved my life. The year I took care of her in her depression and loneliness, I was very sick and very sad. I could barely walk across my yard, I couldn't go see other people, and I hurt so bad that it felt like I was dying. I saw lots of doctors. Every day was so hard. Every day I spent with my chicken so I wouldn't be alone, and so I would have a reason to keep walking across my yard. Months went by, the hardest months I've ever been through.


We can think of any reasons we want to be on this earth. When it all boils down, though, I could see no other reason for me to be here than to be good for someone else. If there was nothing else left to live for because life had become so hard, I could get through every day knowing someone else needed me. Even if it was just a chicken. She was my whole life, and I was hers. I eventually started getting better, and I keep getting a little better over more time. And then my chicken finally got older and sicker and died. I cried. I still cry to think about it. Imagine someone crying over a chicken dying after a lifetime of not crying over death.


I have been crying every day since then, and every day I look for something to do for someone else, even if I can barely do it. People think I'm this really strong person, but I'm like my sad chicken, laying on the ground and looking up at a hawk, dreaming of when I can fly away. I keep getting stronger, but I'm not sure what that means.
 
 

Thursday, July 26, 2012

blinking in the light




I have never blogged about this anywhere. I've mentioned stuff in passing, but I've never really been honest. It is really hard to be honest about stuff sometimes when you get down to the very last thing you have left.


I suppose it's kinda like a really beautiful woman suffering from a life changing deformity or something. Or maybe it's like an athlete getting a career stopping injury. With me, Scott says it's been like Flowers for Algernon, only I started out super smart in the first place.


I have an awesome brain. It has gotten me through things that crumble other people. I got through a weirdly abusive childhood and skated past depression that would have most teens going down very self destructive paths. I have gotten through some pretty rough stuff as an adult that would have most people my age at the very least addicted to something. One thing that seems to shine during some of my therapy sessions with my psychologist is that I'm able to compartmentalize all kinds of things in my head.


I had a very nasty car wreck when I was 19. I've been dealing with hiding disability problems the rest of my life. I absolutely refused to admit or acknowledge I couldn't do some things for a long time. Maybe I'd just have to do them more slowly, or find other ways to get them done. Most people have never known the pain I've lived with, or know very little of it. Even Scott didn't know how bad it was the first 15 years we were married.


Things started crumbling apart in 2004 when I got Bell's palsy really bad. It wasn't typical at all, and between that car accident and an untreated Lyme infection as a teen, it would probably have been no surprise if I'd had a better doctor. I got very sick and had to quit work quite suddenly, but the palsy itself didn't show up for two more months. I couldn't drive for 4 months after it hit, and had ongoing pain and symptoms for years after the paralysis went away.


Along with the usual glitches, like losing the ability to taste my food or smell things properly, my migraines became so severe that I prayed to go blind and deaf if only it would ease the pain in the trigeminal nerves around my face. Over several years I lost the ability to do simple math or read more than one paragraph in a book at a time. I had to completely stop watching tv for two years. I managed to keep working for two more years, finding ways to hide my growing cognitive deficiencies. I even talked to my doctor about becoming a nondriver, because I was making such poor traffic decisions that I couldn't believe I hadn't had any accidents.


Whatever was going on also impacted my immune system. I picked up every little germ and blew it way out of proportion, taking weeks and even months to get over what most people handle in a week. I started having medication reactions and had a very scary reaction during an MRI to gadolinium contrast. I became so weak I could barely walk around my house for months, and eventually suffered an injury while trying to walk across my yard and couldn't walk at all without handfuls of medications for several months.


I knew in my 20's that I might have to face CNS Lupus. I was cleared of multiple sclerosis back then, but wound up getting other labels. I've spent my adult life hiding all kinds of medical problems from everyone around me. But in 2008 it got pretty clear I can't hide this any more. They kept saying it's not lupus doing this, I don't have lesions on my nerves or brain, but no one had a clue what to do with me because all the symptoms were there.


My brain fell out. I couldn't even hide my cognitive difficulties any more. My Asperger traits that I'd managed to sort of hide throughout my life surged forward and took over. By 2009 I was granted complete disability. At the time I was deliriously thrilled that I could bawl my eyes out over that, since I hadn't been able to produce tears from onset of the Bell's palsy until around 2008, and then only a tear at a time that shot nerve pain around my face like crazy. I seriously did not cry a tear for 4 years because I couldn't. I went through eye drops like you wouldn't believe.


By 2010 I had accepted that I'd probably never get my brain back. By this time I'd been on daily steroid for months and was crashing so bad on medication problems that I started getting off everything I could. Nothing was helping the pain, nothing was making it easier to live any more, so what difference would it make? It was all I could do to drive in to see my psychologist, which is about the only time I drove at all because the pain and cognitive difficulty were so bad. Scott bought all the groceries, helped me in and out of the shower, did everything for me.


I've been through some really hard stuff in my life. People I love have died. I don't travel well and can't handle car trips and vacations. I couldn't even get out in the sun for 10 minutes without breaking out in itchy boils. I couldn't go to work, or go have lunch with friends, or enjoy holidays. But I think the hardest thing I've had to face is watching my mind shut down. It's very hard knowing how dumb you have become when you sort of vaguely remember how smart you once were. The depression finally hit me, and it was so cruel.


I know now that I didn't have to go through all that by myself. I'm learning how to use my Asperger's to solve new problems now. I have an edge a lot of people don't have. I have my brain...


I'm learning that it's not the content of my brain that makes a person really smart. What makes a person smart is adaptability, flexibility, being able to use what you've got and create workarounds. I still have a really hard time with math. I aced college algebra on my first try taking the tests with an ink pen. Now I have to use a calculator to balance my checkbook, and I still get it wrong. The govt appointed Scott to be in charge of my finances. You'd think that's a given, he's my husband, but no, that means I can't legally be held responsible to do it myself. I still get confused in traffic, and get lost in stores. But something changed, and my brain is lighting back up again.


1 Kings 19:11-13

King James Version (KJV)


11 And he said, Go forth, and stand upon the mount before the Lord. And, behold, the Lord passed by, and a great and strong wind rent the mountains, and brake in pieces the rocks before the Lord; but the Lord was not in the wind: and after the wind an earthquake; but the Lord was not in the earthquake:


12 And after the earthquake a fire; but the Lord was not in the fire: and after the fire a still small voice.


13 And it was so, when Elijah heard it, that he wrapped his face in his mantle, and went out, and stood in the entering in of the cave. And, behold, there came a voice unto him, and said, What doest thou here, Elijah?


I'm not a church person. I grew up in church, but I haven't been able to sit in one for years. I didn't put that quote there because I got any kind of revelation. It was more like I finally just let go and said God, you do it, I'm too tiny and I hurt too bad and I can't. Heal me. Make me good for people, because otherwise my life has become worthless.


I can't even begin to describe the last couple of years. It's been hard, and scary, but more like being belched out of a broken mountain and thrown out onto the grass, laying there blinking in the light, moving a little at a time, sort of remembering who I am.


All the things I have made in the past on the internet was me holding on through a terrifying avalanche. What I created was not important, but that I kept creating. What I destroyed was not important, but that I accepted letting go.


What I do now is me rejoicing that I have so far survived all of this and can once again create with joy. I wonder what I can get done before I have to let go again.   Right now just sitting up in the grass seems wonderful.

So a note in passing, in case anyone ever wondered, all the bright colors on dark background on most of my websites was so *I* could see my own work.

Saturday, July 21, 2012

an apology of sorts


I have wrestled for years with a personality glitch called Asperger's Syndrome. For most of my life I had no idea I stand out like a sore thumb despite all the effort I put into 'passing', which I'd been forced to attempt as a child. There is no way I can pretend to be normal. The more I suppress and self monitor, the worse the subsequent headaches and anxiety get.

People initially latch onto me because I'm 'fun'. They grab the ball and run with it, thinking it's a game I create. I used to have no idea what the heck was going on in relationships like that. Friends love me, sooner or later we tangle over something I think is really stupid or trivial, and they leave. Simple math.

Eventually I figured out that I'm not allowed to be myself. It's all fine as long as everyone thinks it's a game, as long as I'm fun. My joyful quirks are a breath of fresh air in their lives or something, and it doesn't occur to them they are using me as a plug-in, like a validation video game scoring points. I get pushed, poked, and prodded with sticks like a cat in a cage, and I don't think they have a clue they're doing that. A whole lotta stuff rolls off because I really don't know what's going on, but when I've had enough, even when I think I'm drawing polite boundaries, it all blows up.

I have spent the last 5 years seeing a psychologist, specifically to work on communication skills. I've been working hard on eliminating and paring down reams of print when I have thoughts. I don't like to talk on the phone, and I don't last much more than an hour during any kind of friendly exchange. Several professionals, including the psyche guy, have expressed surprise that I was able to hold the jobs I had as long as I did. Even more surprising is the fact that I've won customer service awards.

I have an aggressive personality and easily intimidate people, even when I think I'm being nice and having fun. I didn't realize this for years. I've spent the last couple of years in almost total seclusion, apart from family stuff, working on the idea that I can let go of compulsively needing to explain something I'm thinking, or even being the speaker at all. I am learning to ask pertinent questions of whomever I'm with, and just quietly listen.

I actually like people quite a lot. I like them the same way I like dogs and cats and chickens and horses and stuff, each individual having its own personality that makes them unique from the group they are in. I interact very well with animals and children. My problem is mostly interacting with adults. I have to learn to get the hang of each person's individual interacting skill set or I wind up like the guy with the model train set, accidentally running two trains into one another in the tunnel and exploding the tracks.

During my reclusive seclusion in my 'cave', I pretty much wiped out nearly everything I'd ever created on the internet, which turns out was quite the little empire. That was one of my favorite hobbies, besides raising chickens, one that I'd like to get back into. While I'm at it, on the advice and some insistence and now actual surprise from psyche guy, I'm going to make everything public and just deal head on with my 'stuff', that dirty little phrase called interpersonal interaction.

Truth is, I need people. I am a very alone person, incognito in a big crowd. The more attention I inadvertently draw to myself, the more I withdraw, this last time until I literally set an automatic self destruct sequence on my own ship, as it were, and I bailed. I spent the last year pretty much off the grid and loved it. And then just missed death hurtling at me in the dark by an inch. It was pretty scary, and very weird to think all the next day and week that I'm alive because of a fluke now. I so was close to not being here anymore.

That changed a lot of stuff. I've come much closer to death than that a couple other times, actually, but for some reason this one really changed a lot of stuff. If I don't feel like I'm done on this earth, it's my fault from now on if I don't GET done. Whatever it is that I'm feeling the need to get done, it's happening now.

And it's so big, it's exploding all over the internet out of me.

I had a friend get after me for wasting time a few years ago. I never waste time. It only looks like I waste time. To me, 'wasting time' is taking the time out to have personal relationships with people, because that means I have to stop the 8 directions I'm going in my head and focus on one person. But you know what? That's important. What good is my head and all the things in it if I haven't shared that with anyone else? We are all here for each other. I don't understand what people want from me, but I know what I need from other people.

All that time I wasted is trying to congeal into something tangible. If you don't get what I just said, don't worry about it. I love you anyway.