Feeding tubes and weird ideas

My favorie BADD post: Tube-ageddon.

I haven't had much time to write anything here about the hell I went through getting my GJ tube. I had every indication for a GJ tube. I had gastroparesis so bad it was starting to affect my breathing, in a way that doctors said was likely to result in infection after infection until I died. From the emergency room onward, doctors were saying my best hope was to get a feeding tube.

Yet the pressure I got from doctors, while in the hospital for one of those infections, was to just keep getting infections, go home, wait to die. Most of them wouldn't say that outright. But some of them did. Some of them we confronted and they absolutely agreed that the only alternative to the tube was death — which could have happened to me by now, without the tube. But they still insisted on telling me not to get the tube, basically that I was better off dead than with a tube. We had to rally a bunch of people on the Internet to call the hospital before they suddenly changed their tune. My pulmonologist told me she could tell exactly when I started getting people calling the hospital, because the tone in my charts changed instantly to “let's get her the tube after all”.

Most people think of all feeding tubes as the same, all reasons for getting them as the same, and so they believe in false generalizations about their capacity to prevent lung infections, or indeed cause them. But they aren't all the same. They're all different, and the reasons for getting them are all different.

I have gastroparesis. That means my stomach is partially paralyzed. In my case it became severe before it was diagnosed last year and confirmed with testing this year. It's probably due to neuromuscular problems inherited from my mother, who has autonomic neuropathy among other things, a common cause of gastroparesis. My symptoms are similar to hers so doctors are assuming whatever we have is related. Anyway, it makes food remain in the stomach a long time. After awhile, this means that you can't eat very much and you drop a lot of weight. (I may still be fat, but they tell me by the end I was burning muscle.) by the end I was having trouble keeping down two small cartons of Boost a day, which isn't enough calories to live on. I was already on a liquid diet so there was no less food I could keep eating.

It also meant that the stuff staying in my stomach was riding up my esophagus again on gas bubbles formed by food sitting in my stomach for ages. I could feel it happening several times a day. I'd belch and food or bile would ride up with it. If this happened overnight, my bipap machine would shove the stomach contents down into my lungs from my esophagus. This began happening several times a week, and from January until March I had about five lung infections requiring antibiotics. I never stopped taking antibiotics, by the time one course was over I'd be on the next. Which is dangerous in its own right.

So when I showed up in the ER a few days after a CT scan showing what they called a “ground glass appearance”, they had no problem admitting me into the hospital, and even in the emergency room they were telling me if I wanted to live I needed a GJ tube. This wasn't news to me. They had been talking about a feeding tube since last fall, when one more nausea med added to the five they'd started me on, made me able to go home without one instead. I'd been discussing with my friends what kind of feeding tube served my needs best as a person with gastroparesis. And the GJ tube had always seemed like the best option.

A GJ tube is like a combination of a G tube and a J tube. Half of it goes into the stomach, which is a G tube. The other part goes into the first part of the small intestines, which is the J tube. The G tube gives you the ability to drain your stomach contents out into a cup, and dump them down the toilet. This means that if you do it often enough, you won't have anything building up in there and going up into your lungs. Right now, even bile and stomach acid can build up to dangerous amounts because of my stomach not emptying often enough, so I take acid reducers and I drain my G tube several times a day.

The J tube portion is the part that stuff comes in through. I eat through it. I drink through it. I get all of my medications through it. This means that nothing has to come in through my stomach. Which means we are bypassing the worst part of my digestive system. Not that the rest of my digestive system is wonderful. My esophagus is slow, my stomach is slow, and my bowels have been producing blockages since I was a teenager. But with liquid food going into my small intestine at a fairly slow rate (one feeding in roughly twenty four hours, I wasn't able to handle the twelve hour version without getting very sick) I seem to be able to handle things much better than when it was going in my stomach. I love it. It's so much easier than feeling horribly sick all the time.

I still take nausea meds, but half of them have been changed to PRN instead of daily. So daily I take Phenergan, Reglan (which speeds up my digestive system), and Marinol. And I can also take Benadryl. Lorazepam, and Zofran as needed. I used to have to take all six of those things every day, so this has really cut back on the amount of medication I need, which is good because every single one of these meds is severely sedating and it was badly affecting my ability to think straight. If I were still trying to eat, I would be taking every single one of those nausea meds at the maximum dose, and still wouldn't be able to eat enough to maintain my weight.

[Photo of me holding my tube. The J tube section is visible, the G tube is hidden behind my hand, and there's a little cloth thing from Trendie Tubies around the base, with owls on it.]

But I had to fight for this tube. Even though it was the only way to save my life. I had to fight against people who were certain I was better off dead. And I needed the help of a lot of people on the Internet, to do it. When I did get the tube, it was done without a working anesthetic. And even though the local anesthesia didn't work on me, even though I was yelling and screaming, they didn't stop to give me more, they just kept telling me that the Versed meant I wouldn't remember it later. Yeah right. It seemed like the entire process of getting the tube was one giant clusterfuck after another, and like people were making it as hard for me as they possibly could. (Later, when I had to get the tube replaced, we discovered that Propofol is the med, in combination with others, that really does the trick to keep me unaware of what's happening.) They treated me like a child, repeatedly expressing the fear that I would pull the tube out like young children often do, and blaming me when part of the tube got lodged inside me, probably as a result of over zealous physical therapy early on that was a clusterfuck in its own right.

But I got the tube and I couldn't be happier with it. I feel happier and healthier. After aspirating reflux several times a week for months, I haven't aspirated a single time in the month or so I've had the tube. My nausea is well controlled. My brain and body work better. Despite a couple complications since then, it's still the best thing medically that's happened to me in the past year. And I'm still alive, which even by now I might not have been if I kept getting infection after infection.

[The x ray showing the tube inside my body.]

Why did I have to fight so hard for it? I see two major reasons. One is that I'm perceived by medical professionals as someone whose life doesn't matter much, doesn't have much quality of life. I'm autistic, they read me as severely cognitively impaired, I am in bed all the time, they don't see that I enjoy living as much as anyone else does, and they make that decision somewhere in their heads without even noticing.

The other reason is the way medical professionals see feeding tubes. I've been trying to read the writing of nurses and doctors to find out their views on these things. Not just the horrible ones. The ones who snark at patients on their blogs. But the ones who think they're compassionate and sympathetic and good at their jobs. But in one area that makes no difference:

They all think of feeding tubes as the beginning of the end. They see getting a feeding tube as the first sign that your life as over. Possibly that you belong in a nursing home, as if anyone does. When I made out my living will, the first question of “Where do you draw the line where you want to stop living?” was whether I wanted to live if it meant I needed a feeding tube. They see people with feeding tubes as the first stop on the route to a living death. Other things they see that way are using a ventilator, having a trach, needing any sort of similar mechanical assistance to survive.

My friends see it a different way. They see me as some cool kind of cyborg, with the oxygen, the feeding tube, and the Interstim implant that prevents spasticity in my urethra, allowing me to urinate. They say the sounds my oxygen concentrator makes sound almost steampunk. But then all my friends are disabled, they see adaptive equipment as cool, and as a means to living, not a sign you're dying.

Medical professionals have been shown time and time again, to rate disabled people's quality of life lower than we rate our own quality of life. And yet time and time again, they see themselves as the experts on what our real quality of life is. One reason I try to keep my lungs and my guts in good condition is that as a person who is autistic and physically disabled, I know that if I ever got bad enough to need a transplant, I'd probably die. Because they would take one look at how I sound on paper, and they would decide my life wasn't as worth living as that of a twenty year old who wasn't disabled except for the effects of their lung problems or digestive problems. (Lung transplant is the end of the line for severe bronchiectasis. My bronchiectasis is mild, I'm working hard at keeping it that way. Transplant is also the end of the line for very severe gastroparesis combined with other gut problems. I'm hoping I don't get to that point despite severe gastroparesis. Given how hard it was just to get a feeding tube, which is the standard treatment when you start aspirating this much and being unable to eat even a liquid diet, I don't know that I stand a chance at making the transplant list should I need one.)

I also had trouble getting home. People were asking me if I belonged in a nursing home, or at least in twenty four hour care. I'm not sure why. It's not like it's hard to care for a GJ tube. It's unusual, but it's certainly easier than my old med regimen, which was truly difficult and time consuming. Now we just mix them up, put them in a syringe, and stick them straight into the tube. Easy. Eating is easier too, no more worrying I will throw up, and you only need to set up the food once a day and press a button on a feeding pump. But everyone has this illusion that it's incredibly difficult, and the VNA loves to take people with tubes and stick us in nursing homes claiming they can no longer care for us on the outside.

[The feeding pump on an IV pole with the food (Osmolite, low fat, high protein, no fiber) hanging above it.]

I still don't understand what the big deal is supposed to be. By the time you get a feeding tube, eating is really hard. Either you're having swallowing problems, or something is wrong with your stomach. In my case, my stomach was emptying so slowly that I was constantly severely nauseated no matter how little I ate, I was dropping weight way too fast, and I was aspirating reflux caused by all the food sitting around for ages. I was quite possibly going to die from repeated infections. How the hell is a feeding tube supposed to be worse than that?

I can't even begin to comprehend the fear of these things. I mean I literally can't do it. It makes no sense. It's all based in prejudice. It has nothing to do with the reality of a feeding tube.

I thought the worst part would be not being able to eat. The most I can do is drink a tiny bit of ginger ale, and I have to be very careful even with that. But I don't miss food. The feeding tube ensures that I am never hungry, and always have the nutrients I need. The only times I have ever started craving food, were two separate days where I spent all day at the emergency room unable to use my tube. Each time I came home and wanted to eat or drink something I didn't normally want to eat or drink. But when I'm getting food regularly, it's not a problem. I barely miss eating at all. I never even think about it. Even the vivid dreams I'd been having about all different kinds of food, all those months on Ensure, have gone away. My body seems perfectly satisfied with what it's getting, and it doesn't crave things unless I can't use the tube.

And it makes everything easier. Food is easier. Medication is easier. Absolutely nothing is any harder than normal. It's more like dealing with something easy and mechanical, than dealing with anything hard. We did learn the hard way to flush it with coke after every medication, because by the time there was a clog, you couldn't get enough coke in to dissolve it. So we are dissolving the clogs before they can even form, by leaving coke in for awhile after every single time we use meds. I've also discovered it's possible to reduce the pressure inside me — which can prevent the meds and water from flowing into me as easily — by relaxing my body, especially my rectum, and then everything usually flows in pretty easily. So there are a few tricks, but it has overall been much easier than my life was before I got the tube.

So what is so scary? I don't know. I can't find anything at all scary about this. It doesn't mean anything horrible. It means I'm alive. Being alive is a good thing. I don't fear death, but I only get one chance at life, and I don't want to die just because someone else has decided my life isn't worth enough to them. And so I'm very much interested in anything that will keep me alive longer, whether it's a feeding tube or any other “scary” device used for keeping disabled people around longer than used to be possible.

A lot of people I know have those devices, the ones that medical professionals think your life is over. Feeding tubes. Trachs. Ventilators. Catheters. Ostomies. Central lines. All those things that seem to scare people to death, even though there's nothing scary about them. They prolong life, not end it. And I'm furious at every single doctor who urged me to go home and die rather than get this feeding tube and get a chance to live longer. That is simply not their decision to make, and they were bound and determined to make it for me until I got enough people on my side to convince them that the entire world was watching the crap they were trying to pull.

I am going to work as hard as I can, to change hospital policy so that nobody gets pressured in the way I did. It's incredibly difficult to deal with pressure to die, when you're already sick and exhausted and have no energy to fight back. And they do it in sneaky ways, so that if I had been delirious or something, which I often am in the hospital, I might not have recognized what they were trying to do. My experiences are far from unusual, many disabled people have been encouraged to die rather than get a feeding tube, or a vent, or something else that would allow us to live. My mother, who has many of the same conditions I do, is going through a mess where doctor after doctor refuses to treat her or perform surgery on her, and she keeps having to go back to the Mayo clinic because they're the only ones who seem to be committed to making sure she can live as long as possible. And as a disabled senior citizen way below the poverty line, she gets the “your life isn't worth it to us” thing from at least three different angles. This stuff isn't unique to my life, the pressure to die is everywhere.

But most disabled people, like most people in general, prefer to be alive. Being disabled rarely changes that fact, not on its own. And the fact that anyone thinks we ought not to, that their pity goes so far as to be a death wish aimed at another person, is so disgusting I don't even have words for it. But they are the ones who are disgusted at my advance directive, which tells them to keep me alive no matter what. I can hear it in the sound of their voice when they ask me about advance directives. Advance directives are supposed to be about making your own choices, but the choice to live is the least respected among them. They would rather I not be here by now, rather I got my sixth, seventh, eighth infection until my lungs finally gave out. I refuse to give them the satisfaction. I love being alive and a tube doesn't change that one bit, in fact it makes my life better.

 

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That is where I post cat posts these days unless there's some reason to do it here.

It's called Cats Who Know They Are Cats. Two recent posts are Fey bathing. Also glaring and tail thumping. And Fey uses mirrors. Two of them. At once.

I figured I should announce it again in case there were people here who didn't know where all the cat posts went.

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Kittylashes!

I’ve been wanting to get pictures like this for a long time.

Either click on the above to see the original size (very large file), or look at the closeup in the next image, to see the kittylashes:

Either click on the above to see the original size (very large file), or look at the closeup in the next image, to see the kittylashes:

I have wanted to show kittylashes for a long time, and finally got them on camera!

More Cat Photos

Still taking awhile to write the cat posts, so more cat photos are happening:

The first one is a photograph of Fey sitting on top of her PetPocket, which is on top of the couch. She sits on that thing all the time, when she’s not taking rides in it.

Here is a blurry photo of her curled up in an interesting shape on the bed:

Here the photo is in better focus, but is cut off in the middle of her eyes. Her tongue, though, is sticking out and curled up to one side, in the middle of a wash apparently:

Here you can see part of her face, and part of my face, with the mattress taking up most of the photo:

The following three photos are of her leaning her head against the mattress, from three different angles:

Here she is snuggled against me my face, seen from above. Having a shaved head again is great, because I can feel her fur with any part of my head.

Here we are again, but she has her nose tucked under her arm:

Here we are with our heads pressed together at the side, but pointing in opposite directions:

Here she is with her arm over her nose, looking at me out of the corner of her eye:

And here she is sitting on my wheelchair yet again:

Dealing with Cats, Part 1: What is respect?

Disclaimer: I am not an animal rights activist, I have zero connection to that movement and their personal sets of widgets, and often only minimal exposure to them through some of their worst representatives (PETA, Peter Singer).

I think the argument about whether animals (including humans) have a nebulous and abstract quality called “personhood” (which seems to have to do with the values of a particular set of human cultures) is the entirely wrong way to go about giving respect to animals. Too often it is terribly ableist and depends upon whether the creature in question possesses certain traits valued by certain humans, and when you go down that road you end up creating a set of criteria that not even all humans let alone all the rest of animals meet. Then you end up creating a system that privileges people based on those traits. And Singer is only among the worst of human beings to do this, he is far from the only one. In fact most people I encounter regularly seem to do this sort of thing all the time, to one degree or another. Arguments about “sentience” are similarly doomed, offensive, and full of the obvious limitations of various human imaginations when it comes to non-humans and some humans. Except that somehow they’re given even more of an outer sense of objectiveness because “sentience” seems to mostly be used in scientific or science-fiction circles.

[Edited to add: I have been told that some of that may matter in legal situations. But this series of cat posts is about personal situations between humans and cats. So in this context, cats should be respected because they exist.]

I base my beliefs in matters like this on respect.

I believe that everything, human or not, animal or not, conventionally considered alive at all or not, is worthy of respect.

I do not believe this in some fluffy insubstantial manner; fluffy sorts of people have been attracted to me in the past because the words I use superficially resemble words they sometimes use, but as soon as they find out a bit of what I am actually about they have a habit of running away rapidly. It is serious to me, solid, and ethically demanding. I also happen to believe that everything communicates and can be communicated with. I do not mean sitting around speaking out loud to rocks and having them speak out loud back. I mean that everything conveys information to everything else, whether or not that information is transmitted through the laws of physics or through complex linguistic patterns.

This is a perception that I have had my entire life and that has often been at odds with my culture. But I can’t let go of it just because some people have done terrible (and I do mean terrible) things to me on this basis (although at times I have learned to avoid the subject altogether). It is too important to how I treat others, from humans to cats to plants to rocks. I am not (as some have misinterpreted me) attributing human traits to nonhumans, I am rather saying that I view every kind of thing from humans to nonhumans as having a quality entirely their own that is important and valuable and worthy of respect and sincere attempts to listen to what they have to say to the world around them.

(I also don’t divide the world up the same way the English language forces me to sound like, but I have learned that very few other humans can speak the language I started out with and have always carried with me underneath the various attempts to sound as if I speak English. I have also found that attempts to translate my language to English not only fall short but cause reactions in others from ridicule to condemnation as incredibly inadequate in some manner whether moral or functional. And that linguists get pissed that I use the term language at all but I don’t know a better one.)

How do I know this language or whatever you call it is shared by other people? For one thing, I see it mentioned from time to time:

Momo listened to everyone and everything, to dogs and cats, crickets and tortoises — even to the rain and the wind in the pine trees — and all of them spoke to her after their own fashion.

Many were the evenings when, after her friends had gone home, she would sit by herself in the middle of the old stone amphitheater, with the sky’s starry vault overhead, and simply listen to the great silence around her.

Whenever she did this, she felt she was sitting at the center of a giant ear, listening to the world of the stars, and she seemed to hear soft but majestic music that touched her heart in the strangest way. On nights like these, she always had the most beautiful dreams.

Those who still think listening isn’t an art should see if they can do half as well.

–Michael Ende, Momo

Or the following quote (somewhat autistic-centric and specific-culture-centric, so occasionally prone to generalizations):

MM: [Speaking of some autistic people…] we do not draw a line between inanimate and animate beings, that they all have a soul to us.

Daina: As a child, everything was somewhat alive to me. Perhaps the face-processing tendency that most NTs have enables them early on to distinguish what is alive and what isn’t, and what is human and what isn’t.

Ava: Or maybe what is and isn’t alive, is just another assumption that NTs make. So for the NT child, either because of the strength of those attachments to faces and the accompanying social world, or through some coincidental developmental process, the aliveness of the sensory world fades. Whereas we ACs retain more of the direct experience of the world and less of the face-addiction-belief thing.

Sola: This reminds me of a poem that I studied in high school, “The Pond” by Bjalik. The poem describes a secret place in the forest, where there is a little pond and a tree growing from it. When the poet was a little boy, he used to go there, alone, and listen to the “language of visions,” an unmediated way for the child to communicate with the tree and the pond. The articles that I read about this poem discussed the role of spoken language, as adding the social aspect, separating the initially naive child from the true essence of the world. I was enchanted by the poem. For many months I perseverated on the meaning of communication and language, searching the library for more articles about this. However, unlike the conclusion of the poem, I did not feel that growing up and maturing inevitably meant losing this innocence and being expelled from nature. I felt that I was still that child in the forest. Now that I know that I am AS, I am not surprised that the poem had such influence on me.

[…]

MM: We are always sewing souls into the things we create.

Jane: Yes I think soul (essence of being) is created through the creation of a relationship. I call it a moral relationship (which I know sounds prissy or sanctimonious to some), by which I mean a relationship where there is acceptance/acknowledgement of agency and responsibility. When I relate to an object (whether it is another human or a bear I have created out of cloth), with my moral/aware consciousness, when I acknowledge my power to affect (recognize, hurt, heal, shine like the sun or nourish like rain — even to destroy like lightning), I also give power to the other (the object) to affect me. So that other is as alive as I am (in this sense). We are in a moral relationship that gives life meaning. That is why I know the bears who are my most intimate and daily family do help me be/have whatever is good in who I am and what I do. It is the relationship that makes us who we are (that makes me who I am). And I say that even though I have a strong tendency to want to say/feel I am I, alone. That fraction of truth lives inside the larger truth of relationships.

MM: Most of humanity is ignorant for not seeing what is around them. I hear the rocks and trees. Wish me well and tell me I am one of them, one of the silent ones who has now been given a voice, and that I must come out of hiding to protect others without voices: in my case I tend to help give voice to persons with Alzheimer’s disease. My washer and dryer speak to me, and I painted a face on them and gave them names and make sure I don’t overwork them. When I worked in a copy shop I could produce more copies than any other employee. Yes, I could understand the physics of the machines and their limitations from overheating etc. But for me the machines were talking to me and I talked back regularly.

I was raised by my Siamese cat I could understand her language better than the human language, and so I spoke Siamese before I spoke English, and I thought the cat was my real mother because I could understand her more than I could understand humans. I speak to children, babies, machines, rocks and trees as if they can hear me and they know what I am talking about. That is why my success with Alzheimer’s patients is so high: I treat them with such great respect and assume they know what I am saying. And I wonder why the rest of the world is so ignorant as to treat others as stupid and dumb and things and animals so terribly because they are somehow less than us? Well I think that this is a very arrogant stance to think we are better or more alive than these others who very much have a soul.

The last set of quotes is from a set of conversations between several autistic women in the book Women from Another Planet edited by Jean Kearns Miller. It’s not identical to my experience, but the basic idea many of them are getting at is quite similar to my own idea of my innate “language”. These are not the only autistic people I have heard say this either, just the ones readily accessible in a book. Whatever way I innately perceive the world around me in this sense has a lot in common with a specific subgroup of other people, many of whom have been defined by others as autistic but not exclusively that. And I am always glad to hear something of autistic people that isn’t the stereotype of either having an empty head or a head filled exclusively with elaborate formal logic like Spock.

So how does all this apply to cats? Well, in my book cats are as deserving of a fundamental respect as are humans, rocks, and all kinds of other things whether traditionally considered animate or inanimate. Like all forms of respect, this doesn’t mean treating all cats identically to all humans (that would be a frightfully human-centered way of doing things), or even treating all cats or all humans the same as each other. Respect has to do with really listening to who someone is and treating them accordingly, even if that differs from how you would treat someone else with respect. Identical and equal are not the same. It is as wrong to reach out and pet all over a cat who finds indiscriminate petting unpleasant, as it is to withhold petting from a cat who thrives on it (but in both cases it’s also wrong to approach the cat in a way that has everything to do with your own preferences and nothing at all to do with the cat’s!). Respect doesn’t mean you don’t have to work to understand the cat either, but that is a topic for a later post in this series.

This post is the first in a series of posts I am planning to write about how to deal with and interact with cats. It’s an attempt to give a broad overview of where I am coming from before I jump into all the details. And my reason for writing this is my reason for writing most things: I rarely see anything written about the subject matter from this perspective, I know I can’t be unique in valuing this perspective (because no one is that unique no matter what they believe), and so I write the kind of thing I would like to see written. And because a friend and I have been discussing nothing but cats for ages, so my brain is pointed in this direction.

[Photo is Fey, viewed from over the top of both of our heads. Her face is pointing the opposite direction of mine, and mine is barely visible in the photo. Her cheek is partly on my cheek and partly on the grey neck pillow. She is a grey cat with ticked fur, and a white area on her nose like a diamond on top of a triangle of white. There is also some white visible on the tiny part of her chest that you can see. She has green eyes, each one partially shut but with one more so than the other. Her ears are in their normal relaxed position. Her whiskers are neither pulled in nor pushed out, and can only be seen on one side where they spray upwards (her face is pointing to the left side of the photo). And to me, the way her face looks in this photo is both intense and familiar, although I don’t know how they would look to anyone else.]

When she curls around my heart and purrs

These photos could easily go with my last cat post, and will have to do while I’m writing a series of new cat-related posts. She was doing something similar to this when I came up with the poem in the last cat post.

I don’t have an adequate way to describe how the photos differ from each other. All of them involve parts of my face showing, and parts of Fey showing. (Fey is a grey cat with ticked fur and some white markings on her face, paws, and belly.) In nearly all of them, Fey has parts of her face pressed to my cheek. We are lying next to each other on my bed, which is slightly tilted upward at the head. The pictures are from various angles. In the last photo, Fey is sniffing my forehead.

We can sit like this for hours, whether awake or asleep.

Cat Love

There is no joy greater than the purring of a cat 
(No not a cat. This cat. Cats are not interchangeable.)
There is no joy greater than the purring of this cat  
When she curls around my heart and purrs
And I purr my silent purr back
She taps out a soft rhythm of her cheek on mine
Once, twice, four times, eight times
Then rests it gently on my face for an hour
Then she shifts, and flips her head upside-down under her arm
The purr getting loud in the stretch 
Then buries her face in my neck for a while 
Before bringing it back to my cheek
And there is no moment where pain matters less
For there is no joy greater than the purring of this cat  
When she curls around my heart and purrs
And I purr my silent purr back 

(Dedicated to Fey.)

We’ve been doing this several hours a day lately, including right now.

For a lovely illustration of a purring kittypile, see the following YouTube video by Anne of her three feral rescue kittens. There is no transcript or captions but maybe someone capable of doing so could do so in comments (including the purring). The most relevant sound to me is the sound of three kittens purring in unison in a way that sounds like an amazing cat harmony.

DIY Communication Devices

Disclaimer: This is about a communication device that Anne helped me set up as a backup communication device (all my other backups — mostly bought used, some bought broken to replace parts in dead ones — have by now long since died or otherwise become unusable by me). Make one of these things at your own risk. Before you buy it, look into it more, understanding that so far neither Anne nor I have figured out how to get full functionality out of the software, and that it involves various vaguely techie stuff like looking for DLL files to download and stick in the right directories and stuff, or the thing simply will not work at all. And this device may be totally unusable to some people for a number of reasons that have to do with the size and shape of the machine, input accepted, etc. It’s not a replacement for a primary communication device either, but an excellent backup for some people, and for other it might be what they’d have to settle for until and unless they got something better.

Anyway, none of my backups work well enough for me to use at the moment (most don’t work at all), and even my main communication device is well-nigh impossible to use with the telephone in my house because of pesky things like logistics, priorities, and the laws of physics.

But I thought this sort of thing would be useful for anyone who has speech difficulties, whether it’s a physical thing, a cognitive thing, an emotional thing, or whatever. Anne said she’s thinking of publishing a guide on putting one of these things together, and that sounds like a good idea to me.

The best part about this is that all the parts can be found used and/or refurbished. This is a good thing because a huge number of disabled people are one or more of the following:

• Under, at, or near the poverty line (unable to afford new equipment, might be able to afford old equipment)
• Unemployed or underemployed
• Uninsured or underinsured
• Severely doctor-phobic (either because of the same condition that causes the speech problem, or because many disabled people have been so badly abused by parts of the medical profession that we end up fearing the whole thing)
• Unable to speak (or speak clearly) for reasons that insurance wouldn’t cover, that medical professionals want them to ‘just get over’, or that would mean discriminatory treatment if people found out the reasons. (For instance, someone so anxious they can’t talk to supermarket clerks might find a medical professional unwilling to get them a device, even if the supermarket problem logistically needs to be solved before the anxiety problem can be solved; alternately they might encounter potentially life-threatening medical discrimination if their doctor found out they had a problem most people consider psychiatric.)
• Intermittently unable to speak, which sometimes means insurance won’t cover it (although insurance funded my first device while I still had intermittent speech that was superficially good the moments I had it)
• Under insurance plans that only let them have one device for a huge variety of situations, including situations where you really need a small and lightweight device (when your normal one might be big and heavy for good reason)
• Speech-related trouble that is so mild that insurance wouldn’t cover it, but that still impact the person’s life heavily enough they want an alternative.
• Etc.

So basically, not everyone can get a device. This isn’t a perfect solution because it still costs money and not everyone has money. But something you can get for anything between $100-400 depending on where you get things and how lucky you get, is still better than getting a worse device for $2000 (yes, I have seen far worse for that amount of money).

The parts are:

• An HP Jornada of the sort that have a keyboard. (Mine’s a 728, Anne’s is a 720.) Although technically this could also run on something that takes a stylus, as long as there’s an onscreen keyboard (in fact parts of it run better on standard PDAs than on this series of Jornadas). I’ve seen these things go for anywhere between $10 and $250, and obviously a lot depends on the condition and where you’re getting it, and also whether you need to buy a new battery for it or not.
• An external speaker that will have louder sound than the PDA itself (because the PDA has very minimal sound in most situations you’d wnat to use one in), and high enough quality to carry the voice. Anne and I both independently came to the conclusion we’d get Altec Lansing orbits, but there are undoubtedly better things out there than this, especially for people with coordination problems or hand weakness given how it turns on and off. I’ve seen those go for anything from $5 to $100.
• A voice from Cepstral ($20 each, I picked Callie, Anne picked Diane)
• A couple of DLL files since Jornadas usually run Windows Handheld 2000 and the software is written for more standard Pocket PCs. It’s specific versions, Anne and I are testing a lot of them to see which ones are best. They don’t provide full functionality of the Cepstral software, but then again that might be a screen shape issue. Full functionality, however, is nice, but not necessarily needed.
• Velcro (Anne’s method so far), duct tape (my method so far), or some other means of affixing the speaker to the back of the Jornada.

And here’s the result:

My hands are there for size comparison, though the angle can make that confusing. Be aware I have small hands.

I have not yet got a video for it, and don’t hold your breath waiting, I haven’t been good at making videos lately at all.

Anyway, the plus side so far (some of these would be drawbacks for other people):

The portability. Sometimes I don’t have the energy, time, and/or inclination to lug a Dynavox around.

The size. Which is the reason I can’t use the Dynavox on the phone at the moment with other logistics and priorities within my apartment. Practically the moment I got this thing together, I had to make a pretty high-priority phone call to one of those services that calls you back later. I hadn’t been able to take those calls by myself in ages. So I didn’t get it a moment too soon.

The battery life seems pretty long so far. I have heard it’s longer on a 720 than on a 728, presumably because the 728 has more memory (AFAIK the only difference between the two). I haven’t had time to test this.

Keyboard size. I have tendonitis and not having to move my hands as far is really helpful. (I can’t imagine ten-finger touch-typing on this with large hands, I’m not even sure whether people with average-sized hands can do it or not.)

The shallow and light keys. The combination of tendonitis and hypermobility makes me dislike any key that’s hard to press. These are very easy to press. (Which might be a pain for someone who wants a lot of tactile feedback when the buttons are pushed.)

The minus side so far:

Some of the menus cut off halfway down, Anne and I have not figured out a way around it. (If anyone is willing to help us find something that allows us to either scroll the desktop down past the bottom of the screen, or take an already-running program and wrap anything going off the bottom of the screen onto the top of the screen, let one of us know. If anyone’s able to program a better-suited either cheap or freeware frontend to the Cepstral voices with the same functoinality, also let us know. This, among other things, is preventing us from saving our voice configurations, we have to slow down the voices and (in my case) lower them a little, every single time.)

The external speaker is hard to turn on and off, due to having to grab it and twist in a very particular way. It seems like it could break easily too, and it’s gotten stuck in between on and off several times.

The DLLs were a pain to get, both of us had to do them from scratch. We might provide better information on that later.

I don’t know that this will be a problem for me or not yet, but I’m not sure how durable this thing is. I no longer fling communication devices at walls or bash them on my head, but I’m still given to forgetting I have a hand, and consequently dropping things as my hand reverts to neutral or fails to correct for some other movement.

I haven’t figured out a way to mount it to my wheelchair yet, let alone at the right height. I wonder whether cannibalizing a mount-plate would be feasible, or whether that’d introduce other problems (it’d have to be able to come on and off even the mountplate quickly, because it has a USB cradle it has to fit into for charging and communication with my computer). Don’t know yet.

I have not yet gotten Ubuntu linux to recognize the Jornada as even existing, let alone talking to it. Still working on it. Haven’t yet tried using wine, I just booted to windows altogether.

I have also not yet tried finding the equipment to plug one into the phone directly. You can buy a thing from Radio Shack for about $15ish IIRC, that is meant for recording telephone calls with and playing tapes back over the phone. You connect it to the phone, flip it into “play” instead of “record”, plug it into the headphone port of the device, and you have a real (if sometimes awkward and ungainly) means of using a device’s sound output directly into the telephone. Depending on the situation an amplifier might also be necessary in between the communication device and the previous doohickey I just explained (I don’t know the word for them).

Anyway, I’m very happy with it so far despite its shortcomings, and looking forward to being able to improve on it. I am sure many variations on the same theme can be made, some of them more cheaply than this, some more expensively. Cepstral is a great source of cheap voices. Joel has made JTalk software to be used with different voices, on a different platform. Neither his nor Anne’s projects are intended to replace a person’s primary mode of communication, there’s too much that could go wrong that way. But as a backup or supplement to another means of communication, they can be excellent, and I’m very happy with it.

A practical tip for packing for trips.

And no, the odd… it’s not alliteration, but some kind of interesting word pattern, in the title of this post wasn’t obvious to me until I typed it. :-)

I had to finish packing for Autreat today, with the help of someone else.

(This is also why I might not be able to get all the comments through moderation for awhile, so don’t panic if your comment doesn’t get through.)

After dealing with a few minor catastrophes (including a power outage during a thunderstorm, and discovering that someone tried to recharge non-rechargeable batteries in my charger, and the batteries leaked all over everything) we got down to trying to pack.

It’s really hard for me to pack, but I stuck it out for a few hours before I had to go and lie down.

Unfortunately, I wasn’t through telling the person I was with, which items I wanted in my messenger bag that I’d be carrying with me rather than sticking in the back of the car, and which items I just wanted packed the normal way.

My short-term memory can be utter crap sometimes. So by the time I got situated in bed, I’d forgotten most of the items and elements of them were jumbled up in my head. Everything was taking place in the other room and the other person, who was pretty strained herself, would’ve at that point probably found it impossible to either write a list of the items, carry them all into my room, or run back and forth talking to me about them.

Then I remembered I have a digital camera.

So I set it to maximum resolution, and handed it to her.

I basically said “Here, please go and take a photograph of the mess. Then bring it back, go on packing, and I’ll work out which things to put where and call you once I’ve made a list.”

She did that.

I got the photo, zoomed in, it reminded me of the locations of the items I wanted to put in my bag, and I made a list on that basis.

Both of us were very happy with this solution to the problem, it made things way less complicated than trying to either bring the stuff to me or bring me to the stuff at that point in time.

And I thought that technique might be useful to anyone who ever ends up in that situation themselves. Plus I want to remember it later myself. So I’m posting it.

Eight Random Things

I’ve been tagged by Steve D at One Dad’s Opinion.

The rules:
1. Let others know who tagged you.
2. Players start with 8 random facts about themselves.
3. Those who are tagged should post these rules and their 8 random facts.
4. Players should tag 8 other people and notify them they have been tagged.

I’m doing this one photographically. The photographs that have larger versions can be clicked on to see them. I’ll do photographs and then the stories behind them. Not sure how random they are, they’re all stuff I found in different areas of the house though.

1) Clock

These are the innards of a particular clock. My parents apparently found it in the attic somewhere and have no clue where it came from. It doesn’t work too well now, but throughout much of my childhood it did. My parents said that its gong was one of the first sounds I responded greatly to, and it was with apparent recognition and great interest (the apparent recognition led to speculation I’d heard it in the womb already, no clue if that’s possible or not). I can remember in older childhood running to watch the workings behind it whenever I heard the first few clicks winding up for it to gong.

2) Beam tree

This is called a beam tree, and we had one in the house because my dad worked at SLAC. It’s another thing I remember staring at a lot. In this case, there was a base a friend of his made, that had a light in it with a rotating colored filter. This meant it would light up in all different colors. I didn’t even realize how rare they used to be until I got older, nor did I understand how they’re made. Basically, they’re made by sticking a slab of plastic at the end of a particle accelerator and bombarding it with electrons. Then a person touches it with a piece of metal in a certain spot, and all the electrons escape. The tree-like shape is the escape path of the electrons.

You can see one being made here:

3) Books

That field guide to birds is the first book I ever read, and apparently memorized a good deal of it. I was quite young at the time. I particularly remember my favorite word ORIOLE (which is black and purple), and because the word was black and purple (due to the O and R), confusing it with the black and purple coloring on the next page, which appears now to be attached to a grackle.

These days, though, my favorite book is a children’s book, Momo by Michael Ende, and my preferred reading is children’s fiction.

4) Scrapbook

This is from a scrapbook my parents made from when I was a kid. For reference, I did not at the time understand the words concepts of humidity, relative anything, water vapor, or percentages. I was copying this almost word for word out of a book.

From the same scrapbook, astronomy stuff that I apparently gave to my parents given it has their name on it. I don’t remember if that was from a book or not. Astronomy was a Big Thing of mine for awhile, I devoured the entire section at the library. Just random kid geekery I guess.

5) Message bracelet

Speaking of which… I don’t know about you, but I don’t know a whole lot of little neurotypical girls who, when asked to make a message bracelet, would come out with something like this. My brothers taught me to use a VIC-20 to make patterns on the screen pretty early, things like this are the result.

6) Cats

I used to collect these, this is only one of the remnants of that collection (I gave most of it away before moving). I used to have an entire shelf full of cats in ceramic, wood, rubber, and any other form I could find them in. Cats, as you can gather, have been another Big Thing for me. When I was in sixth grade I wrote my autobiography as roughly, “We had cats named Tiger and Mouse and Calico. Then Mouse had kittens twice and there were Smokey and Tangerine, but Tangerine’s name got changed to Frank. They all ran away when we moved but Smokey and Frank came back. Then a black cat showed up in our woodpile and got named Jenny before we figured out he was a boy.” And so forth, going on at great length about the fur length, coloring, and appearance of all the cats.

7) Tape measure

I found this lying on the road in Boulder Creek, California, which is where I lived when I first moved away from my parents. It had clearly been beat up and run over a bunch of times. It’s become one of those comfortable objects that I take with me places for familiarity purposes — it feels good in my hand. And it also has ties to another kind of object I used to use that way. When I was in school, I carried a lot of bags around with me (people frequently made the pun with my last name because of this). One of the things I did was I’d pick up rulers and put them in the bag. I unfortunately wasn’t grasping the idea that it wasn’t nice to nab other people’s rulers. I amassed quite a collection. Oddly enough, I never got in trouble for it, but I did get a bunch of kids chanting “Thief! Thief! Thief!” when they saw how many of them I had. I suppose they had a point. (Don’t worry, I’ve since grasped the idea of property.)

8) Star

This is something my friend Natalia sent me, along with a wooden cat. The wooden cat fits perfectly in my hands and has gotten so familiar so fast (and used as another of those familiarity objects) that people often ask me if I’ve had it for ages, but really these things were only sent last year. The ornament is really cool because it’s got little pieces of colored plastic in the middle that look neat when held close to your eyes, and can also be fiddled with and spun in circles. Natalia is particularly talented at picking out things that really suit me in some way.

So I have to tag a bunch of people. Hmm. I hope I haven’t overlapped with anyone’s tagging, and I’m not even sure all these people participate in things like this, but here goes:

I guess I tag Natalia (same Natalia) at My Spanglish Life (because she’s random by nature anyway), Dave Hingsburger at Chewing the Fat (not sure if he does memes or not, but worth a shot), Moggy at Moggy Mania, Rark at rarkrarkrark, Danni at Danni’s Blog, Neral at kirayoshi, Chris at Simple Gifts, and Danechi at And Stimming with Rainbows at Every Design.