The Tightrope Walker
My name is Anne Seals, & I am a high school friend of Chester's, down from Seattle to spend a few days as the in-house companion. I was sure that I would post to the blog every day while I was here. Like lots of the other things I was sure of, my certainty did not match up to reality...
I have missed hearing from Chester on a regular basis -- even got my feelings hurt over it a bit -- but now that I am on the ground, I am gaining a better perspective on that.
Everything takes so damned long in Hemiplegiaville!
I arrived Thursday, & quickly learned how many little time-consuming things there are to do just in terms of basic maintenance. The right hand has to be stretched in a device of torture for part of the day to flatten out the fingers (which want to curl up.) Then it has to be squeezed into another for another part of the day, soaked in ice water when the edema gets bad, lifted & positioned with his left hand for various things... And that is just the one hand!
He wears special pressure stockings ($120/pair!) that have to be coaxed & bullied into position -- I can't even think what to liken it to. Sucking a watermelon up through a straw maybe? In Noplegiaville, putting on your socks takes a few seconds. In Hemaplegiaville, when you are in the hands of a fumbling companion -- well, I would be too embarrassed to post here how long it took this morning! Suffice it to say that it was one helluva lot of seconds!
We have spent a lot of companionable time cursing the foot rest on the wheelchair, which we agree is of piss-poor design. When not needed, it industriously hangs itself up on curbs, scrapes walls, blocks the brake on the right wheel, falls off on the big feet of retarded companions who forget to remove it before trying to stuff the chair in the trunk, & just generally makes itself annoying. (This morning I was dragging the chair behind me on the morning walk, & one of his neighbors had parked a HUGE flower pot on the sidewalk. I veered around the pot successfully, only to have the footrest hang up on a curb on the other side. And meanwhile, Chester was taking off without me -- which I am not supposed to let him do!)
Yesterday, Himself indicated to me that this is the first slow time he has had in a while -- the move from the other appartment is over, & he is not currently having therapy, & there are no medical appointments...
If this is a slow time, I would need to join a gym & get in shape before I could handle a busy time! (Chrys, I don't know how you do it all! Did you swipe Hermione's Time-Turner so that you could magically squeeze extra hours into every day?)
I had talked to Chester on the phone a few times, but was blissfully unaware that all the planets have to line up right for him to be comfortable talking on the phone (or to have the time!) I have studied & taught foreign language, & it is always harder to understand on the telephone when you are speaking a foreign language. When your own language has become foreign to you, the same thing applies. Without the visual cues, & with the slight interference that blurs sounds on the telephone line, conversation is significantly more difficult.
His articulation is subject to change without notice. (The other morning, he bragged to Dawn & me that his articulation was very good that morning -- & then the next sentence out of his mouth went totally astray. Dawn says it happens every time he brags.) He gets very frustrated when words fall apart in his mouth. (Interestingly, when all other words have shattered & fallen on the floor, "Oh, God dammit!" comes out as clear as a bell. Cursing, like singing, happens in a different part of the brain.) He is doing as well as we have been told, but it is an effort, & sometimes there are glitches.
He had told me some time ago in an email that he was getting a FrogPad, so that he could write emails again, rather than having to ask other people to do it for him. I looked up the FrogPad on-line, & was fascinated to learn that it is a tiny keyboard designed for use with one hand. I waited impatiently for the normal stream of emails to start coming, & couldn't figure out why I they weren't. Well, the first FrogPad he got was a Bluetooth device -- & the Bluetooth kept cutting out on him. Vastly frustrated, he returned the Blootooth version for a USB version. The USB version worked quickly & without the technical problems, but now he has the problem of learning to use the thing.
Unfortunately, the instructions are lousy beyond belief. The device is also terrifyingly complex. Every time he sat down to try to figure it out, he got frustrated. Yesterday, I sat down for 2 hours with him, & we puzzled over it together. The problem with the FrogPad is that each key has multiple functions, which have to be accessed by shift-type keys. I don't think there is a single damned key on the pad that has only one function. One key can produce 2 different letters or a number or a punctuation mark or a function or cursor key of some sort, if you first press the right key to access the correct function of the key. (I don't even have a vocabulary to adequately describe the process -- & neither, unfortunately, does the manufacturer!) If you press the number function key down once & release it, a light comes on on the number function key, & pressing the number 7 gives you one result. If you hold the number function key down while pressing the number 7, something entirely different happens. (And since some of the things do not include the creation of a symbol in a document, you can't always tell what the key is doing. On the teaching page, if you are hitting a key that would "page up" in a document, a funny little unexplained symbol appears on the training screen. Good luck finding any explanation of that frigging symbol on the instructions! You have to sit & figure out which of the 4 things assigned to that key is represented by the symbol -- if you can remember which key you gave an experimental tap in the first place!)
Off to the side of the FrogPad, there is a row of 4 little LED lights, each with a cryptic symbol by it. We have looked everywhere in the instructions, & took a quick tour through the web-site, & we still can't figure out what those damned lights are for!
Himself is just arising from his nap now, & we are about to take another run at the FrogPad shortly.
I will post again -- sooner or later... (If I don't strangle myself on the cord of the FrogPad in a moment of despair!)
I have missed hearing from Chester on a regular basis -- even got my feelings hurt over it a bit -- but now that I am on the ground, I am gaining a better perspective on that.
Everything takes so damned long in Hemiplegiaville!
I arrived Thursday, & quickly learned how many little time-consuming things there are to do just in terms of basic maintenance. The right hand has to be stretched in a device of torture for part of the day to flatten out the fingers (which want to curl up.) Then it has to be squeezed into another for another part of the day, soaked in ice water when the edema gets bad, lifted & positioned with his left hand for various things... And that is just the one hand!
He wears special pressure stockings ($120/pair!) that have to be coaxed & bullied into position -- I can't even think what to liken it to. Sucking a watermelon up through a straw maybe? In Noplegiaville, putting on your socks takes a few seconds. In Hemaplegiaville, when you are in the hands of a fumbling companion -- well, I would be too embarrassed to post here how long it took this morning! Suffice it to say that it was one helluva lot of seconds!
We have spent a lot of companionable time cursing the foot rest on the wheelchair, which we agree is of piss-poor design. When not needed, it industriously hangs itself up on curbs, scrapes walls, blocks the brake on the right wheel, falls off on the big feet of retarded companions who forget to remove it before trying to stuff the chair in the trunk, & just generally makes itself annoying. (This morning I was dragging the chair behind me on the morning walk, & one of his neighbors had parked a HUGE flower pot on the sidewalk. I veered around the pot successfully, only to have the footrest hang up on a curb on the other side. And meanwhile, Chester was taking off without me -- which I am not supposed to let him do!)
Yesterday, Himself indicated to me that this is the first slow time he has had in a while -- the move from the other appartment is over, & he is not currently having therapy, & there are no medical appointments...
If this is a slow time, I would need to join a gym & get in shape before I could handle a busy time! (Chrys, I don't know how you do it all! Did you swipe Hermione's Time-Turner so that you could magically squeeze extra hours into every day?)
I had talked to Chester on the phone a few times, but was blissfully unaware that all the planets have to line up right for him to be comfortable talking on the phone (or to have the time!) I have studied & taught foreign language, & it is always harder to understand on the telephone when you are speaking a foreign language. When your own language has become foreign to you, the same thing applies. Without the visual cues, & with the slight interference that blurs sounds on the telephone line, conversation is significantly more difficult.
His articulation is subject to change without notice. (The other morning, he bragged to Dawn & me that his articulation was very good that morning -- & then the next sentence out of his mouth went totally astray. Dawn says it happens every time he brags.) He gets very frustrated when words fall apart in his mouth. (Interestingly, when all other words have shattered & fallen on the floor, "Oh, God dammit!" comes out as clear as a bell. Cursing, like singing, happens in a different part of the brain.) He is doing as well as we have been told, but it is an effort, & sometimes there are glitches.
He had told me some time ago in an email that he was getting a FrogPad, so that he could write emails again, rather than having to ask other people to do it for him. I looked up the FrogPad on-line, & was fascinated to learn that it is a tiny keyboard designed for use with one hand. I waited impatiently for the normal stream of emails to start coming, & couldn't figure out why I they weren't. Well, the first FrogPad he got was a Bluetooth device -- & the Bluetooth kept cutting out on him. Vastly frustrated, he returned the Blootooth version for a USB version. The USB version worked quickly & without the technical problems, but now he has the problem of learning to use the thing.
Unfortunately, the instructions are lousy beyond belief. The device is also terrifyingly complex. Every time he sat down to try to figure it out, he got frustrated. Yesterday, I sat down for 2 hours with him, & we puzzled over it together. The problem with the FrogPad is that each key has multiple functions, which have to be accessed by shift-type keys. I don't think there is a single damned key on the pad that has only one function. One key can produce 2 different letters or a number or a punctuation mark or a function or cursor key of some sort, if you first press the right key to access the correct function of the key. (I don't even have a vocabulary to adequately describe the process -- & neither, unfortunately, does the manufacturer!) If you press the number function key down once & release it, a light comes on on the number function key, & pressing the number 7 gives you one result. If you hold the number function key down while pressing the number 7, something entirely different happens. (And since some of the things do not include the creation of a symbol in a document, you can't always tell what the key is doing. On the teaching page, if you are hitting a key that would "page up" in a document, a funny little unexplained symbol appears on the training screen. Good luck finding any explanation of that frigging symbol on the instructions! You have to sit & figure out which of the 4 things assigned to that key is represented by the symbol -- if you can remember which key you gave an experimental tap in the first place!)
Off to the side of the FrogPad, there is a row of 4 little LED lights, each with a cryptic symbol by it. We have looked everywhere in the instructions, & took a quick tour through the web-site, & we still can't figure out what those damned lights are for!
Himself is just arising from his nap now, & we are about to take another run at the FrogPad shortly.
I will post again -- sooner or later... (If I don't strangle myself on the cord of the FrogPad in a moment of despair!)
posted by Anne Seals at 11:38 AM
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