4:50pm February 1, 2013

Connections and stuff

I am here.

I am curled up in bed. The top half of the bed is raised about 45 degrees and I’m lying with my side on it.

It’s hard to breathe.

Not emergency hard to breathe. Just plain, ordinary, I have bronchiectasis (rare-in-USA COPD) and am getting over an infection, hard to breathe.

At least I could stay home today instead of going to get my back pain investigated at the pain clinic. They won’t let me go there this soon after an infection. I’m tired. And breathing problems make me tireder. So does the pain from last night that was ridiculously bad.

Sometimes I feel very much at home. I feel that way right now.

My back is to the window. But I can see the lake, the island, and the mountains behind them.

I can see other lakes too. The one out my window isn’t a Great Lake officially, but it almost made it. You can’t see the other side in certain directions.

The other lakes I’m thinking of are smaller, you can see the other side in all directions. Some are so small they’re almost puddles, they may even be gone now.

I can see rocks, too. Giant glittery granite. Some sort of light brown stuff.

Hills covered in yellow grass and oak trees, many dead. Always at risk of fire. Manzanita and madrones.

Little creeks of all kinds and descriptions.

Huge mountains and mountains so worn down by age they always look like foothills to me.

Cliffs by the ocean where you can see land and sea and stars, all at the same time.

Pine forests. Redwood forests. Forests of east coast trees I don’t know the name of. Eucalyptus. Quaking aspen.

And these aren’t vague ideas to me. Each one is a specific place I’ve been, even if I don’t know all their official names. I don’t need to be there to see them, just like I don’t have to face my window to know what’s outside it.

And all these years of mostly being in bed have honed whatever this ability is. It’s not visual, at least not always. It’s what the place is, not what it looks like, to paraphrase Terry Pratchett.

And none of the places mean more to me than the redwood forest I was born in. I can lie in bed at the same time as lying at the foot of the Mother Tree, or on the moist soil (and redwood needles, and fungus, and…) beneath it. Sometimes I feel the entire living place with everything in it, beautiful and terrible, life and death, moving through my bones. Sometimes the Mother Tree goes purply-translucent and through it comes the purest light I’ve ever seen. This place is engraved into the deepest places inside me, and it comes back to me both when I look for it and when I least expect it.

I’m not sure I will ever go back to that one place I see as home. I’m not even sure it’s the way I remember it even from half my life ago, let alone the whole thing. But that doesn’t matter. If it ever was, then somewhere in time it always is.

But I don’t need to go back. I’ve been there, so at some point in time I’m still there. More than that, somehow, I can get there, and stay in my bed, at the same time. And something about this is real, though I couldn’t tell you how. It’s not nostalgia. It’s got too much reality, too little wistfulness.

And it has power. I can’t describe it in the terms that I experience it. But it feels like love in the most solid sense possible, love and protection from things I was too young to understand. For some reason – and I don’t think it’s autism, I think it’s circumstance – I never learned to go to my family for those kinds of things. Not really, deep down, the way most kids seemed to, even at the better times when I truly experienced love for my family it was… different. But even now I can lean into that tree, or curl up on the ground out there, and experience exactly those things with a depth that can’t be matched.

The other places I can “go to” in my bed have different personalities, very different. And while they are my friends, they don’t have the same intense familiarity as the redwoods I lived in when I was really little. But at the same time – they all have intense depth and reality behind them. However different they may be, they’re all very real.

Many of them, in fact, are more real when I visit them from bed, than they were for me when I was there. Many of them were places I traveled to. Travel means sensory bombardment, which can be a distraction from where you really are. Some of these are places I haven’t seen since very early childhood, but I know them better now than I did at the time. Once the sensory bombardment fades away you really get to know the place. And once I really know a place, or really a place and time, I can usually go back, as long as it has a personality and memory strong enough for me to locate.

Now I’m in the usual bad mood a certain LNA puts me in. Just being in the same room with her feels like a grating across my skin. She is intrusive without understanding why, and no explanation suffices. Like most of them do their telephony stuff out in my living room away from me. If I’m on the toilet she does it standing by my bathroom door. If I’m in bed she stands by my bed. She wants to get into long conversations, won’t accept nonverbal responses, then doesn’t understand why I get irritated by having to type, when both typing and words are physically painful. She thinks conversations will cheer me up, because she assumes that all shut-ins need to be cheered up while people are washing our asses.

Yet the conversations can turn absolutely ghastly, like the time she spent an extra half hour with me just to drive home the idea that cats should be killed if they have even the smallest amount of pain or illness and that anything else is “selfish”. I haven’t told her that Fey, like me, has chronic nerve pain, probably something like sciatica. You can tell when she hurts more because she snaps her teeth at anyone who touches her right hind leg or anything near it. But, like me, she clearly likes to be alive. I hope she doesn’t understand enough English to understand this person thinks she’s better off dead, although she certainly understands enough about people not to like this person. Do-gooders rub both of us the wrong way.

Rubbed the wrong way. That’s exactly how I feel. Like all the fur on my back has been pushed up into the air. I feel ruffled. I wonder when my fur will settle. If I were a cat, right now I would swat anyone who tried to pet me, claws just a teensy bit out, ears just a teensy bit back. Rrrrrrrrrrrrr.

For some reason I am remembering my early adult days. When I was just getting an inkling of how little I could take care of myself, how much I’d lost of the few skills I had. I was staying with one guy for a weekend to give my primary, unpaid caregiver the weekend off. It was worse than just bad self-care. I was emerging into the adult world from a confusing and traumatic adolescence with my parents unable to give me the guidance I needed – they lacked the experiences needed to understand mine. So I was an emotional wreck too.

Plus losing skills rapidly again – it had been a rhythm between long periods of slow decline and short periods of rapid decline and it was a short period beginning. With only the hint someone gave of a paper that existed explaining why, a paper I had not seen. After an adolescence where I periodically lost words, and was supposed to write on paper, my parents had bought me an AlphaSmart for those ever-more-frequent mute periods. And I’d been dumped in this guy’s apartment to give my best friend a break and some sanity.

So he went off to work every day. I never knew what he did. I lived on his couch. I read from his bookshelf. He brought me food. He was really nice, generous, went out of his way for me, and for the first time in awhile I felt like maybe things could be okay. If only. If only there was some kind of arrangement that worked like this. Where someone could help with what I couldn’t do. And then maybe. Maybe. Maybe. I could handle doing what I could do. And maybe I wouldn’t be so desperate. But I’d never heard of such a thing. And I forgot again as I went back to my impossible living situation at the co-op with my overworked best friend. And my life where I couldn’t do a damn thing for myself and didn’t truly understand why.

Because I thought, surely, with my life experiences, I must be nearly normal. Nearly. At least? I’d been able to do things. But that was before. And more and more. I’d get stuck. And I’d forget “easy” things. And as I grew, people expecting more, while I could do less. And desperation. I knew of no reason and a thing without a reason must be horrible and wrong. And people have me fake reasons, I didn’t know, I tried to live up to the roles people gave me, I couldn’t, they weren’t real. But what was real? A vacuum into which my abilities were falling? And the pressure to do more and more every year. I could do less and less. Pushed myself past the breaking point performing. Tried suicide when I couldn’t be who they wanted, whether they wanted their perfect gifted child or a perfect example of their latest guess at mental illnesses. I wasn’t that. I was something else. Not knowing was killing me. They didn’t talk to me about autism. They mentioned it but the word was incomprehensible and mostly, I ignored it.

But years later and many convolutions untangled, that was the answer. Autism plus progressive movement disorder, making some complex actions harder every year, leaving others mostly untouched. Plus many unrelated medical conditions all converging on me as my family’s genetics caught up with me. As my mother’s genetics are catching up today. But now I was alone. Alone in a tiny apartment. Unable to care for myself. Desperate again. Wishing I had something like those few days living with that man.

Because the more I have to do, the less I can do. My body won’t take it, brain included, stamina, pain, balance, motor planning, musculature, everything, just gives out. Can’t do it all at once. Can only do the things my body will let me do. Which aren’t all fun things, this isn’t a vacation from having to work, I work harder than most people just to do the few things that keep me outside of nursing homes and stuff. And back then I had to do everything and consequently could do almost nothing. If it weren’t for a friend and family members who got me into SSI and services, things would’ve gone very bad for me. Most of those possible pasts get snapped off like twigs somewhere in my early twenties.

Services started out not nearly enough but they were something. And today I truly have nearly enough. I do a lot of work that most people don’t see. But it’s bearable work. It’s like when I lived with that guy a few days. People are paid to do what I can’t do. I do what I can. Which varies day to day. And finally I don’t have the horrible desperation of wondering how I’ll stay alive with a disability. Understanding my body helps a lot. Getting the necessary help does too. Without knowing why I couldn’t do things, why everything was getting worse, I didn’t know what was happening or what to do. Without help doing what I can’t do, I can do barely anything compared to what I can do with proper help.

My motor condition is better known, but not well known, and I worry for the kids growing up with it today, not knowing their futures. I wish I could tell them that life can work out even if everyone is expecting you to gain skills and most of your abilities in those areas are falling apart. I wish I could tell them that they don’t need to develop in the normal rate or direction, in order to be okay. That knowledge would have saved me a lot of grief.

Right now – this instant – I don’t feel well. My head is fuzzy, I’m nauseated even though my last food was a bottle of Ensure seven hours ago, I’m in more kinds of pain than I can name, I’m groggy and sleepy, and my head is swimming with vertigo. It’s not my best day nor my worst as these days go. I’ve got a lot of conditions I never expected to have, growing up, even though I already had some of them back then. But I’m okay. I like my life. Genuinely, not just for show. And that’s largely due to understanding my body, and having the right amount of assistance, not too much, not too little, and flexible depending on the day.

But another thing that helps me a great deal? Being able to “visit” all those places I’ve been, without leaving my bed. It’s not imagination or daydream or some weird supernatural thing. It’s being able to find connections between different parts of the world, so that you can be there without being there. Those connections are important to me. I hate to say this, for fear someone will think I’m going “disability superpower” (BLECH), but being in one place for so long seems to hone my ability to connect to other places. To connect with them better than I might, if I were able to get up and drive or walk there.

And of course, it’s especially true of the place I was born. Sometimes I still mourn for the fact I’ll likely never see it again. But then I feel like I’m there anyway. I don’t need to go there. It will always be with me. And it gives me a strength that comes from the world’s deepest places, a strength that ultimately allows me to handle other things. Like physical pain, delirium, emotional unrest, and all sorts of things life has thrown at me that I never expected.

That’s important. Connections to important places and people can make all the difference. So can learning how to find those connections when the person or place isn’t right next to you. It’s always possible, even when it sounds strange or impossible. Mostly, it seems to involve burrowing deep down into love – the property of the world, not the feeling – and then finding where those places happen to connect to love themselves. Connections at that level are unbreakable, through time, distance, or even death. They have given me a resilience I never thought I could have, because it doesn’t belong to me, as much as to that place where everything connects. Where no matter where you are, you are in the places and with the people who matter to you most. And that’s everything.

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