What is strange.
Is that, as far as I can tell, my mother and I each think the other has a more severe version of whatever we have. I’ve always assumed whatever she has is more severe, but then she told me whatever I have is more severe, and now I’m confused.
(I’m talking about what my friend refers to as “the neuromuscular clusterfuck”, neither of us has a firm diagnosis but our symptoms are similar to each other and we are related so people are assuming it’s the same thing.)
I’m guessing what is going on, is that for each of us, seem symptoms are more severe and others are less severe. So it creates these illusions that one of us is, across the board, more severe than the other. That’s the only explanation I can work out that fits. Either that, or we each underestimate our own problems or overestimate the other one’s problems. Idk. It’s weird.
At least I say I’m numb…
…but the fact that my brain keeps running through all the ways the evacuation plan could go wrong, and where will they live if their property is destroyed and they’re already dirt poor, and what if my dad is miscalculating about how far his camping spot with the dogs is from the fire and how fast he can get away, and what if something happens to him out there, and why are they going to two such separate places, and… ARRRGH. That tells me I must be feeling something. I’m just too sick and sleep deprived and it’s too big a thing for it to set in.
My parents are evacuating.
As of yesterday, my parents should have evacuated their home in rural northern California, due to forest fires. I haven’t heard anything from them since the 12 hour evacuation notice was issued. They’re deliberately letting the fire burn all the way to the town, so it’s quite probable their home could be destroyed from the sound of it. I have no idea how they’re doing or anything. And I’m completely numb about the whole thing.
[A black and white photo of eight people, five in back, three in front.]
This is from a family reunion in Wasco, California, which is where my dad was born. We ate and talked, then drove to the cemetery. And then the older people walked us around the graves introducing us to all the dead people. Which was a lot. But it was really cool, almost like meeting them. And even though I was meeting these relatives for the first time, nobody seemed to care that I used a chair or a keyboard.
But what strikes me looking at the photo is how alike our basic facial structure is. It makes a story my dad’s cousin told make more sense.
She said that when she went to school first time, the teacher called roll. And instead of calling her name, the teacher pointed at her and said “And you’ll be [her name] Baggs.” She asked the teacher how she knew that, and the teacher kind of rolled her eyes and said “A Baggs is a Baggs is a Baggs.”
I mean I know families are supposed to look like each other, but not all of these people are exactly the closest of relatives. But we look like very close relatives.
(And for reference with the family reunion — it was small, but my autie-dar went off more than once. Not everyone there is in the photo, and those of us in the photo had to be pushed into it. This is also the only pleasant family reunion I ever experienced.)
I’m finished sorting papers!!!
I feel exactly as if I have just run until I dropped. Exhausted, sweating, breathing hard, searing pain, can’t catch my breath, nauseated, heart racing. Except actually worse than that kind of exercise for your average person. And all I’ve done is sort papers.
My back hurts almost too much to type. Except not typing doesn’t make it better. Nor does shifting position. Feels like it should. Doesn’t.
Don’t ever try to pull paper bits out of the wrong end of a paper shredder by hand. Hell, out of any end. Not even if it’s off. There are invisible pointy things in there that bite fingers hard. At least I remembered to turn it off. Almost didn’t. No, I’m not safe around household items. I can’t see warning labels, or rather they don’t jump out at me as meaningful.
And I tried to dump the shredded papers into the recycle bin. And it went all over the floor. I felt bad for whoever comes tomorrow to pick it up. So I picked it up myself. Except, I couldn’t seem to get most of it. So my living room floor is a giant pile of papers with little shredded bits everywhere on top of all the papers. I feel horrible for whoever gets the morning shift but my body will only do so much, and what I managed was more than I can normally ever do.
I sorted through an 18 gallon crate of papers though. Two big divisions — keep and recycle. Keep subdivided into general, childhood medical records, adult financial or medical records, and stuff xeroxed from academic journals. Recycle subdivided into general and shred. A huge chunk of the stuff I am keeping is those books and (Mouth/Ragged Edge) magazines I talked about in my last post, the ones that have been mysteriously disappearing from my apartment since I moved here in 2005.
This is a huge problem for most disabled people I know — having caregivers move important shit and not tell us. Often to locations we haven’t a prayer of ever, ever getting to without help. Like in the bottom back spot in the closet, beneath and behind two ceiling-high piles of shit. I found stuff in there that I urgently needed for meetings years and years ago. They never like when we put it this way, but moving someone’s stuff to an inaccessible place without asking permission or telling them is just like you’re hiding it. No matter what the motivation.
Most of the papers overall, though, will be recycled and I am so happy despite feeling like a wreck.
Because I don’t function well around clutter and there is no storage space to speak of in this apartment. I’m using the bathtub as an extra closet to make up for the dinky excuses for closets that exist. Going into the bathroom makes me feel yucky because of the clutter in the bathtub.
I’m finally getting rid of things I probably should have a long time ago, too. I mean it was a nice prop for scaring professionals during speeches, but did I really want a restraint I stole from a mental institution sitting around my house? Sure it was an act of taking back my humanity but it was a long time ago and I didn’t like knowing that a piece of there was here. I took a bunch of photos — especially of the big lie, the words “Humane restraint” — and had a staff person chuck it down the garbage chute. (It’s not fluffy like the ones on their website though. Just hard leather. Not that it makes one iota of difference to the dehumanization factor.)
I normally would be incapable of something like this. Like my mind would go unfocused long before it was done. Or I’d be too indecisive. But sometimes I get into these states of mind where I want to go sort as much as I can and do it NOW, and only hard physical limits will stop me. And when I’m in the state of mind it’s like the more I can chuck/recycle/donate, the happier I get. And then I’m not afraid to be merciless with myself. Which is precisely what I need to combat my pack rat tendencies.
My mother doesn’t understand this at all. Last time I got rid of half my shit, she was convinced someone had coerced me into that.(She gets into this mode sometimes where she decides everyone is taking advantage of her naive, trusting daughter. Er… not that this never happens. But if you believed her, it’d be happening constantly.
I still remember the time she was ready to whisk me back to California thinking my roommate, who was having a life-threatening crisis and acting like a person in a life-threatening crisis, would somehow get me killed. As if I had no choice in the situation she was worried about. My brother described trying to get our parents to see reason — all the “scary behavior” my roommate was supposedly displaying was autistic behavior shared by both me and my brother. I remember my dad telling me I had to forget that other people’s lives were on the line too, and save only myself by moving in with my parents.
Which would have created an even worse crisis. Their home is inaccessible. So is the terrain they live in. Their presence would trash my benefits. Benefits I need to survive, including medication. They live too far from a hospital for my frequent ER visits, medical appointments, and hospitalizations. In terrain where the only ambulance is a helicopter. They are incapable of providing all of my care. As far as I know there is no agency giving services to people in their remote location. If I even could pay for the services after losing my benefits. They are getting on in years so if they died I’d be stranded with nothing, and end up in any of a number of horrific scenarios.
Plus I can’t live with them long without a major PTSD crisis. They are worse at handling my PTSD than they are at providing care — they try to understand in theory but in practice they often end up trying to justify things that happened to me, things where in many cases they have only heard the professionals’ side of the story. If the PTSD is not life threatening, any time spent in the psych system absolutely is when you have life threatening reactions to common neuroleptics. But according to them it was ~so sensible~ that I drop my entire life and move back in with them, and the only reason I thought otherwise was some mysterious power my friends had over me.
So anyway. My aunt’s wonderful form of elder abuse was to talk my grandmother into giving up stuff she wanted to keep. My aunt is… bossy doesn’t even cover it. She wants the entire world to do what she says, and basically directs everyone accordingly. So she went around telling my grandmother what to keep and what to throw away. This is an aunt by marriage so this isn’t some weird mother-daughter thing, it’s just my aunt being her usual asshole self.
So after my mom saw my aunt doing that, she started calling me. Not mentioning my aunt. Just telling me out of nowhere that nobody should ever convince me I need to get rid of things, ever. Even if I do. That she would find some way to put stuff in storage for me, despite her dwindling-to-nothing income. And then later it came out that she thought my staff person in California had been deliberately taking advantage of me by coercing me into giving all my stuff to her.
Which… I was getting rid of my stuff. I didn’t care where it went. But I ask people I know of they want my shit when I do stuff like this because then it’s going to a good home. So I give it to staff. I ask case managers to pass it on to other DD people who may not be able to afford it. And only then do I donate the rest to thrift stores and stuff. And this is because I hate waste, not because people are talking me into it. The particular staff person I gave some of my stuff to, is someone my mom was suspicious of because she did my family a favor once. My mom insisted on paying her, not because it was a good thing to do to compensate her for a job well done, but because “nobody really does favors for free unless they want something”. (?!???!?????)
And the idea of having stuff in storage… It’s horrible. Horrible. It feels like dead weight hanging around my neck, only from afar. I would never use the stuff there again but would always need to pay for it. And even the smallest cheapest storage is nothing me or my parents could afford long-term. And just the money being sunk into that, that could pay for things that made a difference in my life. It sounds horrid.
And for the record. There’s only two things I have ever, to my knowledge, regretted getting rid of, of my own free will. That is my childhood collection of cat figurines. I only have a few now. It used to be quite extensive. But even that, I am not totally sure I could justify keeping around. The coerced item is a bunch of photographs I threw out that a staff person made me feel ashamed for owning. (Because there were so many pictures of me. Which she thought meant I was self centered. Funny, I’m not the one who took them. That would be my mother.)
For 99.9% of the stuff I’ve gotten rid of, all I’ve ever felt is… immense relief? And that’s what makes me get on a roll with this sorting stuff. It may start out for whatever reason, but it feels so great I have to continue. Maybe it’s because I have enough packrat tendencies that I know how stuff can become like the worst kind of anchor. My introduction to throwing shit out happened when someone helped me get rid of a huge stash of old newspapers, and I missed them so very little and felt so very free it became a habit. With things like the icky feeling clutter brings me, or moving house, or lots of other things, triggering my spurts of must-sort-everything.
And… maybe my mom just doesn’t understand how that feels? I don’t know. I just know it is a source of misunderstandings between us. Including the lovely pattern of me getting rid of stuff and her trying to buy me more to make up for it. At least that’s what it feels like. But especially the thing where she gets really concerned my getting rid of stuff is evidence I’m being exploited because I’m guileless and naive and disabled and vulnerable and all.
But I’m done with the papers. (It took hours to write this, especially after I deleted my first attempt.) So yay!!!!!!!!!!!!!!!!!!!!!!!!!!!
Something awful I just remembered.
I never made a lost cat poster when I was a kid. Never. Despite cats going missing right and left, some of them coming back, some of them not. My parents’ attitude to cats going missing was basically to give them up for dead and be happy if they showed up again.
(Unless, like my dad’s favorite of our cats, they came back with their entire back end mangled and crawling with maggots from being dragged under a car. That’s one of the few circumstances I don’t have even a minor qualm about cat euthanasia, and the cat didn’t seem to have any qualms about it either. I mean I miss her, but that would have been an utterly terrible death and there was no possible way to save her or treat her pain and let her die naturally.)
To give one of the worst examples. We moved from Campbell to just over the San Jose border in a place where we still had a Campbell mailing address but voted in San Jose. (On Google Maps it turns up saying San Jose with a Campbell zip code. Weird border places are weird.) It was easy biking distance so it was easy catting distance too.
All of our cats tried several times to go back to our old house. I don’t blame them, the new house was terrible and they didn’t quite grasp this “moving” thing.
My parents made no effort to look for them.
They made no effort to contact the new tenants in our old house and give them a heads up about all the cats appearing in their yard.
They made no effort to plaster the neighborhood with lost cat posters. They made no effort to put up even one lost cat poster.
They made no effort to tell anyone anywhere in any form that any of our cats were missing.
Some of the cats came back. Some didn’t. One of the ones who never came back was the mother of two of our other cats (my parents only barely believed in neutering, sometimes). She had been with us since the redwoods. I have pictures of me sitting with her hunched down by me when I was a baby, me toddling along behind her when I could barely walk. She’s probably one of the ones who slept in my crib and half convinced me I was a cat. I was devastated. My parents were fatalistic and indifferent.
For people who claim to like cats, their level of neglect reached astounding, fatal heights on many occasions and I still get angry. I know they know how to care for animals because they took dogs to the vet for the slightest thing. They only took their cats in for shots and things like that. One cat slowly wasted away and died without any vet care. Another lived with a severe chronic cough for years. I can’t even count the number who died without a vet visit first, or who were taken to the vet only to be euthanized. (This kind of thing is why I think euthanasia is vastly overused.) And then there’s the mildly disabled kitten they took away from my brother’s girlfriend and dumped somewhere. They didn’t know why she cried until she vomited.
One time our cat Jenny disappeared. After awhile my parents gave him up for dead. Then they saw him through the window of our neighbor’s house and took him back, enraged at the neighbor. I think he would have fared better with the neighbor. He was euthanized for a mild illness.
It’s no wonder my mom thinks Fey will drop dead any minute. (She keeps telling me “Fey is trying to tell you she doesn’t have much time left, she wants you to give her permission to leave you so she won’t linger after her time.” And other cheery stuff like that. Thing is, Fey hasn’t told me that, ever, and she knows perfectly well she doesn’t need to hold onto life on my account if she wants to go.) Very few of our cats passed the seven year mark before they died, and only two lived past ten. And we made no effort, that I remember, to save even one. That’s beyond “letting go”, it’s animal abuse.
I know I’ve written about some of this before but I forgot the thing of not even making a cursory effort to locate lost cats. It astounds me that I ever grew to respect cats in that environment.
This is probably going to puzzle me the rest of my life.
So when I came out to my parents as lesbian, I was most worried about my dad. Because he had made… comments about gay men. So I braced for the worst and I told him.
His reaction: “Oh I knew that.”
If I was a cat I would have whipped my ears back and stared at him with wide eyes. As it was, my ears and scalp moved a little bit, pulling my glasses towards my eyes. “How did you know that?”
All he said was “I’ve been around the sun a few times.”
This puzzled me for years. But it was a good thing. Because whatever it was, he was matter-of-fact and decent about the news. More so than some family members who appeared more okay with gay people on the surface. He seemed to fully accept me no more nor less than he had before, nobody else reacted like that.
So when he visited me last year, I asked him about what he said. He just laughed.
I asked him if it was that I never had posters of boys. No. I asked him if it was how I acted around women. No. I asked him if it was how I didn’t act around men. No. I asked him if it was how I acted around my girlfriend. No, he’d noticed before that. WTF. I mean I’d dated a guy before, that he still knew was bizarre.
He said he couldn’t explain it. He’d grown up on a farm and some of the animals were gay — bulls who had sex with bulls, hens who had sex with hens, etc. And something about me reminded him of something about them. And he couldn’t explain it beyond that.
(No, I’m not offended at being compared to farm animals. Not in this context and not by him. I think it’s cool that animals seem to have taught him to take this as normal on a deeper level despite some of his surface beliefs. Having plenty of exposure to people deeply uncomfortable with me despite surface acceptance of gay people, I’d take someone like him any day. That’s one problem I have with treating oppression as being all about language use. What you say and what you are, aren’t necessarily the same thing.)
I’m still going to be baffled forever.
[A gravestone, the kind that is flat against the ground. It’s bordered in flowers and says: “Judith A. Oleson. In Loving Memory. Aug. 28, 1902 - June 5, 1993. I love you.”]
My mom found my great-grandma’s gravestone on some kind of online service where you can see stuff in cemeteries.
I feel really lucky that she lived long enough for me to know her, especially since my parents had me so late. I was almost 13 when she died. She was an amazing woman who went back to Sweden to live as a young child and traveled back entirely on her own when she was about 12. I don’t remember a lot about her history before I knew her. I know she worked as a maid for awhile, and married someone who was almost definitely autistic, having more than one autistic sons before autism had a name. She had a whole lot of children and brought them up during the Depression. She lived in her tiny house long enough that the two of them almost became symbiotic in a way. I mean her and the house. It’s hard to explain. She was very kind and generous. When she got older and started having a lot of health problems, her son lived with her and took care of her for as long as he could. That was just how our family did things. A lot of the time when I knew her she was living in bed and in a wheelchair when she did get up. A lot like I am now, only more physically brittle due to old age. I wish I still had a photograph, I can’t figure out when I lost it, but it had her, my grandma, my mom, and me all in a row when I was maybe nine or ten. I never knew her as well as my mother knew her, because we didn’t live near her. But I could sense the kind of person she was, and that’s a very rare kind.
My hobbit parents
Right around the time they were retiring, my parents, now 65 and 70, saw the Lord of the Rings movies. They immediately read the books (I paper clipped the parts that the movies hadn’t got to yet). Then they declared themselves hobbits.
They retired and moved to the mountains. They put a sign on the road to their house that says “Baggs End”. (Our last name is Baggs. Yes, this got me teased when we read The Hobbit in class as a kid.) They started saying stuff like “We’re not overweight. We’re hobbits and we like our food.” My dad went to see the third movie in the theater and talked about how everyone cheered during the fight scenes like when he was a kid.
To this day, they constantly refer to themselves as hobbits and make tons of hobbit jokes. And my mom does scary-accurate Gollum impressions.
Growing up I never expected them to like this stuff, even though I was pretty obsessed with it. Now, they reference it more than I do. (I maintain that I’m an Ent. That’s why, simultaneously, all language is foreign to me and I can rarely avoid going into long-winded detail about everything. And in the redwood forest I was born in, I made tree friends before I made human ones.) It is really cool to share this sort of thing over such a wide generational divide. (They had me late, by accident, so they’re technically old enough to be my grandparents.)
If I read one more parental account that says having a child like me is like a death in the family, I’m going to scream.