I’m out. (I aten’t dead)

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It's hard to write the sort of way I write on this blog so it has been hard to write about it here. Because my brain is very unrecovered from everything.

 

Went in. Got cured of pneumonia. That process was easy and quick for the doctors and long and harsh for me. Especially with the meds upsetting a stomach that had not seen food in weeks.

 

Which came of interest after they cured the pneumonia. Turns out I have gastroparesis. Partially paralyzed stomach. Hence more nausea and lower appetite over the years. Lost ungodly amounts of weight this time and they noticed finally that I'm burning muscle and his is very bad. Apparently it's likely I got this genetically tied to my mom's autonomic crap. Anyway it makes you empty slowly so you always feel full and a normal amount of food makes you throw up.

So lots of nausea meds later (I was literally one failed med away from a feeding tube being considered) I can now eat… sort of. A certain number of Ensure Pluses a day.

My brain has developed the ability to dream amazing food in amazing detail. So I no longer miss food as acutely. And I'm very happy Ensure exists.

But seriously of all the diseases to give a sort of former emetophobe, this… Gah. Well I already knew it as “chronic nausea”, its just the second hospitalization involving it was what it took for them to notice how bad it was. That and “I haven't eaten anything but broth and half servings of grits in weeks”.

 

My main problem is since I was there five weeks, my brain functioning isn't great. Started off with full bore delirium, then settled into what I have now. Low grade delirium. Caused by long term hospitalization. (the places cause it, they're perfect environments, think sensory deprivation) So my brain is… Sporadically operational. Continue not to expect much and be pleasantly surprised when much happen. Just still the gastroparesis is fairly severe even if managed, and the brain stuff is bad. I get lost in my own bed. The pneumonia is gone. Yay? That was so long ago now.

 

I'm very sorry to everyone who contacted me to ask if I was dead. I never intend to create that impression.

 

Ii have many things to say about what's wrong with hospitals and what hospitals should be more like. But I can't. Except one of them is causing delirium and then not detecting or trying to resolve it except in rare violent cases. Most delirious patients, like me, just lie quietly and you'd never know neon bugs were eating my eyelashes.

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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.

23 responses »

  1. When I was in the ICU the machines made loud beeping noises, so loud I couldn’t sleep. During my hospital stay I was transferred to another hospital with outdated older equipment that did not make loud beep noises and I got some rest. When I complained of the beeping sound in the more modern hospital I got a condescending smile and “Yes they do make beeping sounds”. No one can link lack of sleep in the ICU to poor patient outcomes so this will never be fixed. They don’t listen to the meat in the bed.

  2. “Ii have many things to say about what’s wrong with hospitals and what hospitals should be more like. But I can’t.”

    This is what I’ve been dealing with whenever I try to write about something recently.

    I’m really glad you’re out and I’m sorry you have to deal with so much stuff. I may have said this before but I would look A LOT more “low functioning” if I had to deal with half the things you did. I probably will look more like that as I get older.

    Actually I had my own Doctor Adventures recently that involved travelling to another city and basically three days of lying in bed surrounding the appointment itself. Not exactly the same thing you’re dealing with now but… stuff is too much sometimes.

  3. Be yer Jed yet? – an old black country saying inquiring after someones health :)

    Maybe you recall Dave Swarbrick, the fiddler for Fairport Covention who was once reported to have died in our local hospital, much to his surprise.

    Pneumonia is of course a serious business and the rest sounds narsty, but it is good to see you blogging again.

  4. Welcome back. I will admit I was worried for a while, but having read and reread your last post particularly the request not to contact you, I figured you would let us know what was up when you were able. I had to fight off urges to post anxious comments on here.

    Didn’t bother because well…..you would have had to at least look at them if only to hit the delete button if that’s what you would have done (not assuming you would. I just think seeing a bunch of “omg I was so worried” and “omg im scared now havent seen activity in a while” kind of stuff waiting to be moderated isn’t exactly energizing to the brain in any way.)

    Wow this comment looks like malarkey haha I need to go to bed.

    Long story short, welcome back.

    REST

    RELAX (or at least try to)

    HYDRATE

    Andrea

  5. Wishing you a good recovery, I’ve recently watched your film ‘In My Own Language’ and was enchanted by it. Have also written about it in my blog. Your whole approach is brave and fascinating, very glad of the privilege of seeing your work and your blogs. Oh and we have cats too, they are generally in charge of things!

  6. I was hospitalized several times for dialysis when I was about 15 or 16. I was on a lot of weird medications, and what little I do remember had a general feeling of delirium about it.

    Even when my parents visited me, there was a pervasive sense of abnormality and mortality to the whole thing. The moans of the dying kid in the same room as me, the mattresses that felt like cardboard, the dreams about going home, having blood cleansed through IVs inserted into sensitive places on my body, I would wander around with my wrist IV looking at the pictures on the walls, trying to find something interesting I could focus on. I eventually entered a psychotic state, mostly due to the drugs, but the environment didn’t help much.

    The saddest part was, although those were the worst days of my life, it probably wasn’t as bad as what you went through because a) I can communicate verbally and b) it was a children’s hospital so there’s more effort spent on entertaining the patients.

  7. Most people never intend to create the impression of being dead. In fact, intending to create any impression at all might be a sign of not being dead. However, i do admit to emailing Muskie to ask if you were still alive. Of course she didn’t answer because she doesn’t. But i figured that if you weren’t alive, she might have made an exception and answered. or there would have been an announcement of some kind.

  8. Reading what you are going through Amanda tore me up. I was angry that this was happening to you, as if it was unjust. I raised my clenched fists in anger. This was followed by tears of sadness. You seem so brave to be able to endure so much and keep on writing and sharing. I wish you the very best.

  9. Hi Amanda,

    I think your blog is really good and I was wondering if you would mind me linking to it? If you could email me when you’re feeling better or respond to this comment, I’d really appreciate it. I hope you’re recovering well from your pneumonia.

  10. Amanda is a Latin name meaning, “deserving to be loved,” or, simply, “worthy of love.” =)

    Beloved,

    !!!! thank you, thank you, thank you!!!! ….for all that you’ve written on this blog, i can’t describe how grateful and empathetic i am, but i want to try because:
    >>>>you are so very right about such a very wrong world<<<>

    I have a medical marijuana card. my nausea, vomiting, anxiety, depression and even body pains have dropped dramatically. i am the last person to push any kind of drug, but for me, it’s a god-send.

    i also have a juicer and food processor. i take liquid vitamins, enjoy a lot of exotic soups… and i read, i love to find blogs that remind me that i’m a person and i’m not alone.

    i am very open to any questions or comments you might have, so when you can & (if you want to) i am here for anything.

    your admirer,

    ~Anna

    • awesome, for some reason 10 paragraphs are missing from the middle of my original message. i was diagnosed w/ gastroparesis last yr and on top of the drugs for everything else i’m supposed to take, it was just too much! i couldn’t move or think (total zombie) on Reglan and my eye starting twitching and the whitecoats just wanted to up the dosage and for me to be a good lil patient, take more drugs and suffer in silence. but enough is enough. i got my blood tested- and my hormones were way off and i was totally vitamin/nutrient deficient. “let food by thy medicine dr. hippocrit said ;) http://en.wikipedia.org/wiki/Orthomolecular_medicine

  11. Hi, Amanda,
    I hope your health (and life in general) is doing okay
    I just wanted to drop a note to let you know that I’ve started a new wordpress blog called “Rambling Justice” (because I ramble a lot, and will probably do a lot of that rambling about social justice issues). My first post there is about the importance of having more deaf characters, and characters who experience various forms of marginalization in general, in fiction, with a personal perspective on the first time I “met me” inside a book contrasted with my experience with the TV program, “Switched at Birth”. Am deliberately avoiding hypertext link in the hope that this helps prevent this comment from being caught in your spam filter! :-)

    http://ramblingjustice.wordpress.com/2013/03/03/1st-met-me/

  12. I’m not a regular reader here, but I do know of you and got worried when I just read on Bad Cripple that you were resisting doctor who told you to consider “alternatives” to treatment. I’m glad you’re better and out of there! The gastric problem seems a pain, but at least you’ve got a diagnosis and meds that seem to work now.

  13. Hi Amanda,

    I’m so glad you’re ok and soon to be coming home; we’ve been worried about you here! Your experience in hospital sounds awful. Sadly it’s not an experience that unique to the US – there’s research in the UK on premature death among people with disabilities because of the treatment they receive in healthcare services:

    http://www.bris.ac.uk/cipold/fullfinalreport.pdf

    I know you’re generally really busy and probably inundated with people contacting you, not to mention busy recovering from your illness, but I work for the Centre for Disability Law and Policy at NUI Galway in Ireland:

    http://www.nuigalway.ie/cdlp/

    The Centre does a lot of work on themes that you often discuss on your blog (we are all enormous fans of your blog – it’s on our reading lists here) – issues like deinstitutionalisation, rights to personal assistance and independent living, work on guardianship and also poor treatment in healthcare. We are running various projects and conferences on these topics, including a project focussed on getting people out of institutions in Eastern European countries, and giving them access to support to live independently and make decisions for themselves (rather than being appointed a guardian). We find your videos and posts extremely powerful. If you might be at all interested in getting involved in any way, we would be absolutely delighted. It’s an open invitation, and you can always get hold of me at the blog linked to in this comment.

    Take care, and I wish you a speedy recovery!
    Lucy

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