My pneumonia got much worse and I’m in the process of being admitted to the hospital.

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I’m exhausted past the point I knew exhaustion even existed. I’m glad my friends pushed me into this. Both of them were extremely freaked out after finally seeing me.

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About Mel Baggs

I am a highly sensing person. I am a child of earth and water, I was born into a redwood forest and I left the forest but it never left me. I'm 34 as I wrote this. If I had an alignment like in role-playing games and MUDs, I'd be chaotic good all the way: I don't think it's possible to fill ethics into a moral code, the world is far too complex for that. I let the world be complex and chaotic and try to respond situation by situation from a small number of principles of right and wrong. My responses may seem to contradict each other, but that will be because either the situation has changed, or I have changed. I am a poet who is trying to practice more every day, hence the poetry blog. I am a cat lover and live with a wonderful elderly cat. I am a painter when I have the time, energy, and resources. I have multiple cognitive, physical, developmental, and psychiatric disabilities, and my health is not usually stable. Put all together, I'd be considered severely disabled. I get a lot of assistance throughout the day. I am a real living cyborg, part human part machine: I have a GJ feeding tube to feed me through one tube and drain my stomach through the other,, an InterStim implant for urinary retention, and a port (a permanent central IV line). I love life. I think Love (not the sentimental emotion, but the property of the world) is the most important thing that human beings can offer each other. Being near death enough times has taught me that, and has also taught me that I have no time for bullies or pettiness. I'm involved in disabilty rights and other causes that people these days would call 'social justice', but I don't consider myself part of the 'SJ community' or the 'anti-SJ community' because of that thing I said about pettiness -- they're more about one-upmanship than fixing the world. I wish they had not taken over the words 'social justice', which used to mean something else. I love talking to just ordinary people about fixing the world, they have far more realistic ideas and more likelihood of putting them into practice. I'm a Hufflepuff to the core, with some Gryffindor tendencies and even a little bit of Ravenclaw. I admire some Slytherins but I don't have much ambition or cunning at all. I still think the Slytherin common room is second best, with Hufflepuff coming first. My favorite color is brown, especially when combined with a bit of yellow or blue. My favorite music is country, and my favorite country artists are Kathy Mattea, Lacy J. Dalton, Kris Kristofferson and Rita Coolidge, Merle Haggard, and Loretta Lynn. I don't like most new country but i occasionally hear something on the radio I like. At an early age, my family listened to country almost exclusively to the point where I thought all the different types of country were all the different types of music! I couldn't put Lacy J. Dalton, Buffy Sainte-Marie, Dolly Parton, Merle Haggard, and Kris Kristofferson in the same category. Although now that I've grown up I can hear that they are all country, but as a kid my ear was trained more for minute differences in country styles, than for recognizing country from other types of music. Country isn't all I like. Some other bands and artists I like: The Cocteau Twins, Dead Can Dance, Rasputina, Jefferson Airplane, The Beatles, Rich Mullins (I'm not Christian but some Christian music is amazing), ), The Raventones/T.R. Kelley, Planet P Project/Tony Carey, Sinead Lohan, Donna Williams, Suzanne Vega, Phideaux, and Jethro Tull, to name a few. I love the Cocteau Twins in particular because they are everything being sensing is about: Words are chosen for their sound, not their meaning, the voice becomes yet another instrument rather than a conveyor of words, raw emotion pours out of them, there are layers upon layers, and they were around for long enough there's lots of their music in a variety of different styles -- including their later stuff where the words have more meaning than just sounds. Each period in their music has its benefits and drawbacks but I love them all, or nearly so. Their music comes as close as any music can come to conveying how I experience the world, as what Donna Williams calls 'pattern, form, and feel'. And Elizabeth Fraser has a beautiful voice, I once had a teenage crush on her. As I type this, I have a cat sitting on my shoulder, cheek to cheek with me, peering around and occasionally rubbing me. My relationship to her goes back 15 years to when she was six months old, and we've rarely been parted since. It's been an honor to watch her grow into a wise but crotchety old lady cat. She knows she's technically older than me and tells me so sometimes, especially during arguments. She has trouble with the fact that there are parts of the human world I know better than she does. She sees me as her big, dumb kitten who needs protecting, and is beside herself with worry if I end up in the hospital (which seems to happen frequently these days). I don't experience myself as having a gender identity, I call it being genderless. You'll sometimes see the pronouns sie and hir in my work, they are gender-neutral pronouns pronounced 'see' and 'hear'. I was raised female, which gives me both disadvantages (outside the trans community) and advantages (inside the trans community). You don't have to remember my pronouns, lots of people have trouble with gender-neutral pronouns. I won't be upset with you. People make mistakes, and some people just can't get the hang of new words, and that's okay. I have vocabulary problems myself (mostly comprehension), I'm not going to penalize other people for having vocabulary problems of their own. Right now my father is dying of cancer that's metastatized so many places they can't figure out where it started, my mother has severe myasthenia gravis that can land her in the ICU (and she's my father's primary caretaker), my "second mother" (who took over when I grew up and my family didn't know how to prepare me for the world) has endometrial cancer, and my cat is getting old. All of this is bringing death to the forefront of my mind and my poetry. In fact I think I've been able to write more poetry because of all the feelings about so many people dying or with precarious health. It was easier to handle when it was me that was going to die (averted by diagnosis and treatment of severe adrenal insufficiency that'd been going on for years). It's harder when it's someone else, someone you love. My other hobby is crocheting, and a lot of the time if I'm not writing, it'll be hard to find me without a crochet hook or occasional knitting needles in my hands. I love to be able to make things. I have been making hats and scarves with spare yarn (which I have a lot of), and putting them in City Hall Park wrapped in plastic, with notes saying "If you're cold, take this." I know what it's like to be cold in the winter, and if anyone takes them and stays warm I'd be overjoyed. You may have noticed I'm long-winded. This is actually the result of a language disability that makes it difficult for me to leave out details, to see two almost-identical things as perhaps something that doesn't need repeating, and to summarize or condense down my writing. I know this is a flaw in my writing, and it even prevents me from reading it sometimes, but I've found no solutions. Sometimes on my longer posts I'll put a "TL;DR" ("too long; didn''t read") summary at the end in bold letters for people to skip down to.. But even those don't feel adequate, even when I can do theme, which is not always. I think I'm getting better though. Learning haiku and other short poetry forms helps me condense my words better. Anyway, I hope that gives you enough idea of who I am. At my most basic, I care about Love more than anything (whenever I come near enough to death, I feel like I get asked the question "Did you Love, and did you express that Love properly?"), but like everyone I get sidetracked into things that are much less important. I try to make my writing an expression of Love. Sometimes I succeed.

6 responses »

  1. I hope for needed rest and antibiotics and lots of fluids ..Sending positive thoughts for recovery, May you stay safe in God’s care, Firm hugs, Mom

  2. Ms. Baggs- I know you said communication would be difficult for awhile, so I’ve been waiting for a post in which you said you were feeling better. But I thought perhaps I’d go ahead and leave you a message and then you could reply when and if you feel comfortable doing so.

    First, I hope you’re feeling better. Aspiration pneumonia is no joke, so I’m sure this has been an awful experience for you.

    Now, why I’m posting. I’m a first year Masters student studying the sociology of autism. This is a new field and as far as I know, there are only a few other people in the world studying this. Looking at the autism spectrum through sociology instead of psychology or biology gives one the ability to see how autistic people affect and are affected by neurotypical society, and how they fit in or do not fit in as individuals. I am coming from a viewpoint that is supportive of neurodiversity and critical of existing beliefs about intelligence, social standards, and emotions. I hope my research will show that many commonly held “truths” about autistic people are not accurate because existing studies have focused too much on quantitative, outside views of human behavior. I plan to start my research by simply talking to people and observing with an open mind instead of making a hypothesis and then trying to show myself as being correct. This latter method is where most autism “knowledge” comes from.

    I am contacting you because I have thus far based a great deal of my work on your writing and videos. Your experiences have disproved sociological theories that abstract thought and a sense of self require a language system that involves other people. Helen Keller has been used for a long time as an example to show that without language you cannot have a self or complex, abstract thought. She self-reported that she was more like a wild animal than a person before she knew language. Since animals were academically believed not to have “minds” (no ideas, no complex thoughts, no ability to see themselves objectively), these are disturbing things to think about human beings. I believe that your experience proves that the way self and thought are assumed to be organized are A) not dependent on a language requiring other humans, and B) not universal in their expression.

    I will be spending the next few years researching the idea of self in autistic people, the demands put on autistic people to learn neurotypical behaviors (looking others in the eye, not stimming, altering their voice), the phenomenon of autistic people “passing” as neurotypical, and possibly emotion in both neurotypical and autistic people. If you have anything to say about these issues, or anything else, I would be ecstatic to hear it.

    As I said, I consider you one of the most important experts in the autism field, especially about the well-being of non-verbal people, alternate thought systems, and alternate understandings of intelligence. I understand that English is a second language to you and that it is difficult to respond when you’re tired. Any time you have to spare in a response would be very helpful to me, even if you don’t have time for a few months.

    You can contact me at marjorieDOTnyeATgmailDOTcom (where the DOT is a . and the AT is an @)

    I am also VAGraduateStudent on WrongPlanet if you would like to check out my posts. Most people don’t feel comfortable talking to autism researchers, so this may help you to get to know me before you commit to talking to me.

    So sorry for the long post. I hope to hear back from you.

    -Marjorie Nye

  3. I know you don’t always have the time or energy to update your blog, but considering this was your last post, I’m worried. Please let us know you’re okay.

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