Sunday, November 15, 2015

Has it been two and a half years already?  Where to start....

Some things haven't changed.  I'm still not going to church.  Don't imagine I ever will.  I still haven't qualified for Social Security.  I'm still playing the piano.  I still have the driving problem, and the recognizing people problem, and, more often than I'd like, the people-not-undertanding-that-I-have-a-problem problem.

I haven't been to a doctor for a while now, if you don't count the injured thumb incident a while back.  They take you seriously in the ER if your thumb is obviously injured.  Thumb is fine now. 

I'm still getting my meds from overseas without a prescription and treating myself

I'm a better doctor than any doctor I've ever had.

Just before I gave up on medical practitioners, I discovered the one asthma inhaler in the known universe that actually works for me.  I must have tried a hundred different ones over the years.  And I've insisted on taking it easy when I get sick.  I'm doing that right this minute.  I also refuse to spend any time outdoors when it's cold--it's a trigger for me, and I'm done making myself sick.  Looking back over my two blogs, I see just how very sick I was, and how ridiculously hard I pushed myself to keep going at a regular pace no matter what.

This will hopefully be the fourth winter that I don't get really, really sick for long periods of time.  If you don't count the flu from hell that one winter.  It was still a better winter than many before that.  Looking back over this blog, I don't thinking it's fair that I counted that one, though.  I am a failure as a hypochondriac for not counting that as one of the sick years. lol

But that's not the only thing that has changed.  A LOT has changed.

I got divorced.  It was a long time coming.  I'm probably not going to talk about it much here.  Unless I decide to.  It needed to happen.  Really, really, needed to happen.  My sister was the one who made this possible--she and my father are financially supporting me now.  They were more than half-supporting me already.  Child support helps when it comes.  And I'm actually getting SNAP!  And I have my state's version of Medicaid now, not that I've used it yet.  And my sister and I are planning to do a major remodel on this house, which desperately needs it.  Lots of little things have already been done to the place.

I am in better shape financially than I have been in a long, long time.  I know intellectually that I am not wealthy.  But I feel wealthy.  My island is no longer a third world country.  And it is a free country now....

My new fb page is going great.  I've managed to make all sorts of online friends, from countries all over the place, with all sorts of beliefs and lifestyles.  Many are autistic, a few are chronically ill, some are both.  I'm part of the online autism community now.  It's a fantastic place.

And we've joined a homeschool co-op!  People who are not ultra-conservative Christians (mostly not Christians at all) and who couldn't care less that I don't have a job.  The girls have been making friends, and we've been having them at our island for sleepovers.  I have actual real-life 3-D friends!  We even had a small Halloween party here.

Life is better.

I may not write here much--there is so much that I want to do, and not enough hours in a day to do it all.  And I'm not sick and bored so often.  Maybe I'll pop in from time to time, though.

See ya around!

Monday, June 3, 2013

Banging My Head on the Wall

Maybe that's not a politically correct thing for an autistic person to say. ;)

Some weekends are just like that.  I'm sure everybody has them.

Then the church that my husband and children go to is sending the older kids on a mission trip next month.  Our two older children will be going.  I just found out that by next weekend they want $100 a kid.  Doesn't seem like much.  Except our bank account is running on empty.  So....every other week my father gives us $300 grocery money.  Guess we'll be living off my survival stash for the next couple of weeks.  It's a good thing I'm always prepared.  But it would be nice if the people at church had a clue about what it's like to be poor.  I don't really know why they should--nobody else does.

And then....a relative brought up my sense of direction.  Again.  The conversation went something like this....

"Blah blah blah." (Stuff about where something was at that I did not understand.)

"Uh-huh." (Code for "I'm pretending to understand even though we BOTH know damn well I don't.)

"Blah blah blah."


"You know, blah blah-blah blah blah blah-blah-blah."


"What.  Ever."

It's a great word, 'whatever'.

Anyway, the Wii now says that I'm 35.  I've improved in three weeks.  Now if I could only lose weight.  I'm thinking that I might be putting on muscle, though, and I'm fairly sure I've lost a bit around the waist.  I've been good about my diet--putting in all that hard work exercising is definitely not an incentive to over-eat.  So we'll see what happens.  And I've discovered another benefit to the Wii--it makes me stop.  I got up to level four on bicycling (virtual bicycling is way more fun than it ought to be), and I only had two more flags to find, but I'd been looking for an hour, and the Wii cut me off.  Told me to go take a break.  That was before dinner and it's almost bedtime now.  If it wasn't for the Wii, I'd probably still be pedaling.  Maybe I'd be unconscious by now.  I think I'm become (cough) addicted (cough), as daughter #3 would say.  Maybe I'll get addicted enough to actually lose weight.

I played through the entire John Thompson piano series this last week.  It was fun.  There's some really good music in there.  I think John Thompson is underrated as a composer.

I've also become addicted to 'Diamond Dash' on facebook, but that's just a passing thing.  I don't allow myself to play it until after dinner.  I may need a 12-step program.

I've also been playing Words With Friends.  I beat everybody.  Finally, a savior arrived in the person of my brother-in-law.  He managed to beat me.  By 11 points (she observed competitively).  He might beat me again this time.  My father reminded me today--I used to be horrible at Scrabble.  It's funny how my brain learns to do some things given enough time.  Sometimes I'll be way behind everybody, and then I'll just catch up out of the blue and suddenly I'm the best.  Weird, huh?

I am competitive.  I've lost lots and lots and lots of times.  My lopsided brain is quite used to failure.  But second-oldest has a high score on Wii hula hoops, and I had to try with all my will to beat it today.  I nearly had a heart attack.  It was literally several minutes before I could breath normally.  I can't get anywhere near her score.  It's her fault--she'd taunted me.  She's just mad because I beat the hell out of her at Diamond Dash.

Well, the girls are all outside camping in a tent tonight.  I think I'll go get ready for bed.  Good-night!

Sunday, May 19, 2013

Amish Peace

I exercised this morning while everybody was at church (and last night, when everybody went to dinner with my in-laws).  I behaved--I took breaks.

This afternoon my father took us all to see Star Trek:  Into Darkness.  It was really good.  The moral of the story--don't make Mr. Spock angry.  You wouldn't like him when he's angry.

I finished a book this week (I mentioned it on this blog a few days ago):  Amish Peace, by Suzanne Woods Fisher.  Even though I'm no longer practicing Christianity--well, I'm not really practicing anything in particular, so I may as well find wisdom among the Amish as anywhere else.  I guess most faiths have a little bit of wisdom.  (The only thing I'm not reading up on is atheism.  My sister liked what I said this morning, so I'll repeat it here--I can't really consider atheism, because nobody can point to a god-shaped hole in the universe somewhere and say, "He (She?  It?  They?) isn't there, so He doesn't exist".  Agnosticism makes a certain amount of sense to me some days.)

Anyway....I've often thought I'd like to be Amish, but only for a couple of weeks.  I'd like to take a horse and buggy ride.  I like colorful the colorful quilts.  I like the idea of living closer to nature (the Amish are good at that).  But I like the internet.  I like reading what I want to and listening to what I want to and playing the piano and wearing comfortable clothes.  I'm also not at all sure I'd like quilting and canning for the rest of my life.  To each her own.  But this book brought up some good points, after outlining the origins of the Amish culture.  For most of the book, Ms. Fisher talked about different aspects of being Amish that one could emulate, without having to actually be Amish.  Which fits in very well with my practice of "Eclecticism".  So here are the main facets of the "Amishness" (it should be a word) that Ms. Fisher considers worthy of trying to incorporate into our lives:

Simplicity.  The Amish don't believe in having a bigger house than they need, or more stuff than they need.  They also don't have to worry about interior decorating, or fashion.  This allows them to focus on what's important to them.  Our lives out here in the modern world are so complicated that it's hard to focus on anything for very long.

Time.  The Amish have a different view of time.  I've tried to resist the 'hurry-hurry-faster-faster' attitude that seems to be everywhere, but it's not easy.  It's not that I don't want to be productive.  But it's stressful.  There has been a lot of pressure on me to hurry over the years, maybe partly because sometimes I am slow--having crummy visual processing and memory sometimes does slow me down.  Sometimes being sick slows me down, too.  But I wonder why we all have to hurry so fast.

Community.  I have to wonder what it would be like to be surrounded by siblings and cousins and aunts and uncles.  The only thing that would disturb me would be the lack of independence.  I would love to have a community, but I'd hope it would be a tolerant one.  Our society does seem to focus more on competitiveness than community.  A lot of people are very isolated.  I've been sick alone, taken care of young children alone a lot of the time, or both.  I've gotten some help with the poverty that results from being disabled, but that burden has fallen on only a couple of people instead of the entire community.  I don't know what I'd do if I didn't have them.  And I've raised my children practically alone--they should have had more community.  I'm glad they have church.

Forgiveness.  This is a good one.  Nobody's perfect.  Anyway, the whole human race needs to grow up.  There is so much we don't know.  People are born with physical problems, or neurological problems, or they grow up in horrifically abusive families, or abject poverty, and then it's so easy for us to blame them for how they turn out.  And the judgmentalism (judgmentalness?) does seem to be contagious.  It brings peace to forgive others.  I think it was  Beth Moore who said something about failure to forgive a person being like having to carry them around with you everywhere you go.  It's a burden.  And it's not just others--I'm still working on forgiving myself.  I don't only want other people to be perfect, I would like to be perfect, too.

The Sovereignty of God.  How easy it is to fail to put spirituality anywhere on the to-do list on any given day.  I'm improving on this one, too. (At least I don't feel I'm a worse person than I was a few years ago--I'm heading in a direction I like, even if I'm not moving as fast as I want to.)  I've also worked at trying to accept that things are the way they are.  I don't control the universe.  Serenity prayer and all that. 

I like the lack of competitiveness among the Amish.  I don't have a problem with a bit of pride in a job well done, or a bit of competitiveness.  But we carry it too far.  Among the Amish, nobody has a bigger wedding, or a bigger buggy, or better clothes.  Everyone is equally valued.  I like the humility--the other side of forgiveness, perhaps.

Some things to aspire to.

Thursday, May 16, 2013

There. Will. Be. Breaks.

Well, last night everybody left the house, so I tried something new.  Nope, not having an affair, or carrying out some odd pagan ritual--nothing so interesting as that.  Maybe you should stop reading now and go find something interesting--the internet is a big place.

I got out our Wii Fit CD and the balance board.

I've never used it before--somebody's always home and watching television.  I entered my birth date and height and it weighed me.  Then there were some fitness tests--mostly balancing.  It told me my 'fitness' age is 51.  Not too bad.  The other Wii game, Wii Sport, told me I'm 43, so if you average them out you get my actual age.  And I have to brag--I got onto the top ten scores in several games, competing with my husband, who's in the National Guard, and four teenagers.  So even though I need to lose weight, I'm not totally lacking in physical fitness.  Not bad after many years of on-and-off-again serious illness.

And it was kind of fun--balance games, yoga, strength training, aerobics--and I finished up with a short run through a virtual park.  Wii Fit suggested a break a couple of times, but I only had a couple of hours before the family came back, and besides, breaks are for losers, right?  So after Wii Fit I boxed with Wii Sport.  I've been doing a bit of that lately.  The last opponent was so good that by the time I finally beat him, I could barely keep my arms up.  Wii Sport suggested a break, too, but I ignored that.  I am nothing if not disciplined.

Then my family came home, and I went to take the dogs outside one last time before bedtime.  Only my legs didn't seem to want to hold me up any more.  I don't know when I've been so totally exhausted, without being sick.  I was barely able to manage a few more chores before I climbed upstairs to bed, not quite crawling up the stairs.

So next time, There Will Be Breaks.

And today was yard work day.  My 'fitness' age last night may have been 51, but when I got out of bed this morning I think it was closer to seventy-something.  Fortunately I've pretty much completely recovered now.  Mowed the lawn, ran the weed trimmer (and it was in the eighties out there), used the hedge clippers, power washed a few things outside.  And I feel pretty good.

Sunday morning everybody will go to church.  And I will work out.  With breaks.

Tuesday, May 14, 2013

Hyperbole and a Half

I've discovered a new blog:

I love this blog.  It's hysterical.  Thought you ought to know.

Monday, May 13, 2013

We Are Here, We Are Here, We Are Heeere....

Hi!  I'm sitting here watching 'The Voice' on television.  'The Voice' is a absolutely mandatory if you have four teenage girls in the house.  It's mildly entertaining, and I really like Maroon 5's music, but it's very rare that I can sit through anything on television without having something else to do, like posting to my blog, or hanging out on facebook.

I've been thinking about facebook today.  I've been looking at my relationships with people a bit differently lately.  After being exposed to Ewa Schwarz....

....I've realized that most of the time (if not every freakin' minute) we're not actually relating to people, but to what we think of those other people.  In a way we're relating to ourselves.

Imagine we're both sitting in the same room.  I sit here looking at you.  I see what you're doing.  I see your face and body.  If  you speak, I hear your speech.  But I assign all sorts of meanings to what you do and say, based on assumptions from previous relationships with other people, and on what kinds of things you've done in the past, and on wishful thinking, and my own deepest fears, and how I would behave in a similar situation if I were you.  I don't really know what you mean.  You do your best (hopefully) to communicate your meaning to me.  You use body language, and facial expression, some of it even intentionally.  You use words and volume and pitch.  And I try to figure out what you mean.

But I don't really know.

And it's not that I don't know because I'm autistic.  Certainly, that makes it more difficult.  But NTs (neurotypicals--'normal' people) don't really know what the other person in the room means, either.

I've started to imagine myself trapped in a big, dark sphere.  All over the inside wall of the sphere are reflections of all of the people I've met.  I don't see the real people, just their reflections.  Even when someone's not in the room with me, I can still see a shadow of their reflection.

It's a crowded sphere.  My parents, sister, husband, children, pets, in-laws, people from church--even shadows of fictional characters and people on television I've never met--even Frederic Chopin's shadow is there, sitting in a drawing room there on the wall of my sphere, or walking the streets of Paris as a youth.

I can't get out.  They can't get in.  Maybe they're each trapped in a big, dark sphere of their own.  I don't know where Chopin is now.

I think we're biologically programmed to be around other people.  I think our very bodies are unhappy not being touched, not being surrounded by people.  For an autistic person like myself, too much touch and too many people/hours per week is a bad thing, but there's still such a thing as too little, and many autistic people get way too little interaction with fellow humans.

Facebook partly fills the void, but not completely.  And that's what I've been thinking about today.

Because even with facebook, I'm still off in another place, interacting with the reflections of other people.  We exchange ideas.  We each try to figure out what the other person means.  Isn't this just as valid a relationship as an in-person relationship?

I have thirty-one autistic friends now.  I can almost imagine each of us sitting in our separate place, trying to communicate with each other, just as people in the same room would.  In some ways it's a bit easier--because autistic people are more likely to say what they mean and mean what they say.  But we're all still guessing.  Are these relationships less valid than face-to-face ones?

The only difference I can see is that with these people, there's no real penalty for 'ditching' any of them.  If I were to stop talking to my family, people would disapprove.  If I filed for divorce, some people would disapprove.  I'm forced to take care of my children, not that I wouldn't even if the five of us were shipwrecked on an island somewhere.  All of these people are also valuable to me in an extrinsic way, providing me with, well, money mostly (which provides food and shelter and heat and all the other things I've become used to having).  They provide me with encouragement and intellectual stimulation, too, but facebook friends can do that, too.  Not that I'd replace my sister or children with a facebook friend.  I'm lucky to have a few people in my life that I actually love, beyond just being happy that they're useful.

I suppose that if I were to treat a few autistic people online with blatant disrespect, word would get out and I could actually be ostracized.  There are dozens of inter-related autism support groups, and word would get out.  I'm sure I could get kicked out of my asthma support group, too, if I behaved in a heinous manner.  But, I'd still have the house and three squares a day.  I don't need those people.

In a way, not having to depend on them frees me to be myself.  Being financially dependent on other people sucks the life right out of relationships.  It's harder to risk making the other person unhappy by revealing what you really mean.  When I moved to a new facebook page, and became 'Erika', I changed into another person.  That person is even starting to spill over into my flesh-and-blood life in some ways.  The thought crossed my mind recently that I would never have wanted to change my name before.  And my mother gave me that name--it would have seemed, I don't know, ungrateful.  But I don't think my sister would really care all that much.  I've never really cared for my name.  And I like this new person better, even though she's really still me.

In a way, I don't even see the real me sometimes, but a reflection of that as well.

On facebook I can be myself.  The shadows that my facebook friends see are probably in some ways more real than the reflections that some of the people close by are seeing on the walls of their big, dark spheres.

I miss my mother.  I can't see her reflection any more.  Sometimes I'd swear she's still here.  Her shadow is always going to be on my 'wall'.  Other times I feel trapped--I can't see her reflection any more, and I can't see where she's gone.

Sunday, May 12, 2013

What makes you think that your problems are Permanent?

I've decided that Mother's Day sucks.

I am now adding it to other 'sucky' holidays, like Valentine's Day.  When you grow up without ever going to a dance or going out on a date, Valentine's Day isn't much fun.

Halloween, now that's a holiday I can get into.  As if gobs of candy weren't reason enough, you can play dress-up and decorate and have an extremely dark sense of humor and still be socially acceptable.

But Mother's Day....

When my mother was in the hospital, I kept thinking it would be nice to have still had my old church to go to.  There was a pastor's wife, and a dozen older women, who I kind of missed more than I usually do.  It's dawned on me today--I don't have a grandmother living--my mother's mother passed away just weeks before she did, and my other grandmother passed when I was twelve.  I don't even have a mother-in-law--she died eight years ago.  In fact, I don't have any women in my life at all except for my sister and my children, who are almost women.

I try not to waste time feeling sorry for myself.  I've spent most of the day just pretending Mother's Day doesn't really exist.

I think denial isn't always such a bad thing.

Here's something I saw on facebook that I liked today:

Kind of my new philosophy of life--focusing on....what?  I don't know.  But I only have a few decades left on this planet.  Whether I go to Heaven  (where there will presumably be gobs of candy every day), or get reincarnated (maybe I can avoid being a gnat in my next life if I manage not to wallow in self-pity more often than I can help), or something else entirely--I'm starting to think that this isn't all there is, and that it's not (quite) the end of the world if I can't get a job, or make my marriage work, or find a church where I'm acceptable.  Hopefully I already have people (and pets) waiting for me, wherever I'm going.

It doesn't seem to bother most people that they are going to lose everything.  Every person they care about, every pet, every possession, every place--they're either going to lose them, or be lost themselves, to death, sooner or later.  If they're lucky, they might get an entire century on Planet Earth before the end.


For a majority of the last forty-seven years I've been in a place similar to the place I'm in now--alone, almost housebound, unemployed (or failing in school, or both).  I am now working on accepting that this is the way my life is going to be.  Hopefully I'll be able to stay in this house--being able to go out in nature comforts me.  But there's no point in worrying about that.  More useful denial.  I've given up on getting government assistance--maybe I'll try again some other day when the desperation gets a little worse and we need the money a little more than usual.  But right now applying again seems downright silly.  And besides, I am REALLY tired of trying to prove that I'm trying, instead of being a malingerer.

I'm making the best out of my situation.  I've been exercising more--I'd lost fifteen pounds (yay!), and then stopped.  No more pounds would budge.  And then I read in a book about the Amish ("Amish Peace" by Suzanne Woods Fisher--more on that in another blog post, perhaps) that they eat mashed potatoes and doughnuts, but aren't usually overweight, because....well, this is probably the reason why we have so much obesity in the United States these days....they work hard physically.  Not watching TV several hours a day or sitting behind a desk, but planting and plowing and canning and taking care of animals and walking everywhere.

Maybe people are meant to eat all the fat and sugar they can get their hands on.

So when everybody leaves the house, I get on the Wii.  I mean, I still had a salad with dinner, and refrained from having seconds, or opening that bag of chips in the cupboard.  But I might really need to be more active.  Pedaling on the exercise bike while I talk to my sister is apparently not enough.  We have several physical fitness games that I never play because somebody's always watching TV or playing the Wii, and when everybody leaves I go relax in a corner somewhere.  I've given that up for now.  I've also started exercising a little more when I can--lifting a few weights while I read the book about the Amish, doing a few leg lifts while I'm online, whatever I can think of.

I keep going through the clutter in the house, and just keep busy doing chores and homeschooling and playing that piano.  It's not easy sometimes, because I think nobody will ever hear my music.  But the music is good for me--it's good for my mood, and it's a bit of exercise for my hands and arms.  It even seems to do my back a bit of good.  Every day I click to donate. 

I spend some time on facebook--talking to other autistic people.  Autism support groups on facebook are wonderful for acquiring lots of friends--I think you could fairly reliably diagnose autism based on how many (non-autistic) friends a person has on facebook.  I have seventeen--four children, a husband, a sister, four relatives, a fan fiction author, and six people from illness support groups--I occasionally talk to sick people, too.  It disturbs me--people who I know for a fact are severely troubled and/or just not very nice get on facebook and within a month have dozens of friends.  I think that maybe having dozens of facebook-only friends might be best for me--when one dumps me, I can just go on with my life.  The way normal people do when one of their dozens of friends dumps them.  Having only one friend and then getting dumped is not healthy or fun.  And autistic facebook friends laugh when you tell them that May 8 of 2013 is a Fibonacci number.

I think facebook-only friends are also better for me because they won't ever expect me to be able to drive out somewhere to meet them.  I think sometimes I might be alienating people by making them think I don't want to see them, when the truth is that I simply have no way to get to their house, or the park, or a restaurant.  Even though the last couple of times I've tried to explain.  It's also nice not to be failing to recognize people and missing their facial expressions and struggling to hear what it is that they're saying.  But it doesn't quite kill the loneliness.

Being out in nature kind of does.  Being stuck in a room all day would definitely make things worse.  Especially if there weren't a piano in the room.