Posts Tagged 'brain injury'

Two Things Service Dogs Can Do that Assistive Technology Cannot (with a side note on brain injury)

I’m having that feeling again. That feeling of being in a partnership. Of having a service dog I can rely on. It’s been three years since I last had that feeling, and boy, am I happy it’s back.

Not that Barnum and I don’t still have plenty to work on. We do. But here’s some of what he’s done today, and I’ve only been up five hours (and he was out on a walk for one of those hours):

  • Helped me undress for my bath by removing two socks, two long-sleeved shirts, and — with coaching — a pair of sweatpants
  • Shut my bedroom and bathroom doors to keep the heat in (repeatedly because I and other people sometimes forget to shut them, see below for memory issues in humans)
  • Shut and opened both doors when I needed them opened
  • Went to get my PCA while I was in the bathroom (opening two doors to get to her)
  • Retrieved my walkie-talkie, a plastic lid, and a pen when I dropped them
  • Retrieved my slippers for me (a few times)

And other stuff which I’ll describe below.

The reason I’m writing this post is that several times today I was able to rely on him for things that I hadn’t planned on needing him for, and it reminded me of all the times people have suggested I use this or that piece of equipment — instead of a service dog (SD) — for a particular problem. And why those solutions sometimes fail me. That’s why I’ve categorized this post under “Waspish Wednesday,” even though it’s not Wednesday, and it’s mostly a celebratory post. It’s also because now that I am enjoying the partnership I have waited (and worked) so long for, I am remembering (with some bitterness) all the unhelpful suggestions of people who have told me that I didn’t need a SD for what I need a SD for.

Not that I don’t use or believe in assistive tech (AT). I do. I use a lot of AT, and I am a big believer in people having access to as much AT as they want to improve their quality of life. And I also believe that there are some situations for which AT is much better than a service dog.* And, they are not mutually exclusive. They are complementary — in my case.**

So, here are two things that service dogs can do that assistive technology (with very few exceptions) cannot:

  1. Think
  2. Move on their own

For example, one of the main things I use Barnum for is communication. I have written about this quite a bit, especially in recent posts. When Gadget died, I got a “doorbell” that became my main way of getting my PCAs, but it had a lot of drawbacks that made me miss Gadget all the more. A lot of people over the last three years have suggested a lot of equipment ideas to rely on instead of Barnum. They are a bell (already have it), walkie-talkies (already have them), and an intercom (have it but can’t use it). Even though I use the doorbell and walkie-talkies every day, I still need Barnum. Here’s why:

  1. My assistants and I are human.
  2. I have neurological damage that impairs my memory.
  3. I have MCS (multiple chemical sensitivity).

Let’s start with #3. The reason I can’t use the intercom is the same reason that for quite a while I couldn’t use the walkie-talkies or the doorbell — they are plastic, and they offgas plastic fumes when they are new. The doorbell took the least amount of time to offgas. I don’t remember now — I think it was just a few weeks, primarily because the only part I have to be near is tiny and the bigger, smellier part is away from me, in the kitchen. The walkie-talkies took a year to offgas. The intercom we have had for over two years and it still reeks to high heaven. I doubt I will ever be able to use it.

Problems #2 and #3 are just variations on a theme. I’m human and my assistants are humans, therefore we sometimes forget things. They have sometimes gone home with the walkie-talkie. They sometimes forget to bring it with them outside. They sometimes go to the bathroom or to get the mail and don’t take them with them. One of my assistants refuses to carry it because of the electromagnetic radiation it emits.

Plus (#3) I have a disability which specifically fucks up my memory, therefore I forget a crapload of things all the time. Every day, many times a day, I forget things, often the same things, repeatedly. All these ideas you might have for dealing with this? Writing things down? Carrying things with me? Velcroing them to me? Timers? Alarms? I’ve tried them all. I already use them all. And it’s still not enough. So don’t fucking suggest them. Please. (That was the waspish part. Could you tell?)

Anynoodle, what I have done in the years since Gadget’s death and Barnum becoming a reliable SD is use the doorbell, and more recently, the walkie-talkies. They certainly are much better than not having them, but there are issues. One is that sometimes I can’t speak, so when that happens, the walkie talkies are about as useful as the doorbell in that they can convey only one piece of information: “I am trying to get your attention.” This can be very limiting, whereas having Barnum bring a note is much better, as I explained in this post.

Another issue is the brain damage/memory thing. I lose these pieces of equipment. A lot. I used to lose the doorbell and the walkie talkies constantly. Frustratingly constantly. Because the problem was that when I taped the doorbell to my overbed table, I didn’t lose it, but I could only use it when I was in bed and not to call for help from the bathroom. Then I got the walkie-talkies, mostly for their portability, and I’d forget to take them with me to the bathroom. (Oh, and someone suggested — after I explained about my memory — that I keep another set of walkie talkies in the bathroom at all times, which tells me that this person doesn’t use walkie talkies because they have batteries that must be charged every night, like a powerchair. If I left them in there all the time, the batteries would be dead when I need them. It also assumes I’d be able to find and reach them in the bathroom which is used by other people. Or perhaps she thinks I should buy three or four sets of walkie talkies?)

Then, I got the brilliant idea of Velcro! I velcroed the doorbell and walkie-talkie to my overbed table where they are within reach and cannot escape. I also put Velcro on my powerchair so I could bring them with me. This has worked very well for the doorbell in that I just leave it velcroed to my overbed table all the time, so I never lose it. But for the walkie-talkie, sometimes I leave it stuck to my overbed table, and I can find it. Sometimes I lose it in my bed. Sometimes I attach it to my chair and then use it when I need it, but more often, I attach it to my chair and then can’t get to it because I’m in the tub or on the toilet and my chair is out of reach, or I have gotten back in bed and left the walkie-talkie attached to my chair, and I can’t reach it, etc. (The bathroom that has the tub is not wheelchair accessible.) Or I bring it to the bathroom with me and put it next to the tub/toilet and then forget to take it with me when I leave and then it’s in the bathroom and I’m not, and I can’t get to it. See how helpful that piece of AT is?

Ahem.

But NOW, I have a working SD. So, today when I wasn’t sure if I needed help getting dressed or not after my bath, but I really wanted my PCA to go make me lunch because our time is limited, I could send her off to the kitchen with the agreement that if I needed her, Barnum would come get her (because I had left the walkie-talkie on my powerchair and also forgotten I had it with me, whereas Barnum’s a lot harder to miss!). And when I stood up and realized yes I had used too many spoons and I needed to get to my chair FAST before I fell over, I could have Barnum open the door ahead of me and skeedaddle out of the bathroom so I could make it to my chair, as opposed to having to sit back down on the toilet, wait for my PCA to come back, help me up, and get to my chair, which would used more PCA time and even more of my spoons. And when I dropped the walkie-talkie (that I’d forgotten I’d brought and therefore didn’t think to use and therefore left it behind), Barnum picked it up and brought it to me. And when I forgot to put on my slippers and they were in the bathroom and I was already in my chair, I could send Barnum back into the bathroom to get them.

You cannot call your bell or walkie-talkie or slippers when you leave them somewhere. Well, you can, but they won’t come. They also won’t retrieve things. They also won’t open doors to get to the thing or person you want.

I love my powerchair. I would be in trouble without it. But sometimes if I am feeling well enough, I prefer to walk to the bathroom, for example. (I try to always use as much energy as I can without overdoing; it’s a very difficult balance.) Sometimes it is fine and good to walk to the bathroom. Sometimes it’s impossible and I don’t try. And sometimes my powerchair is charging or I think I’m doing better than I am, and I discover that I have used too many spoons (especially now that I’m on Clindamycin which means I’m spending a lot longer on the toilet than I’m used to!) to get back to my powerchair, my doorbell, my walkie-talkie, my bed, and I might need my service dog to help me get up and walk back, or to open the door, or to get a human assistant to bring me my chair.

Choices. Having a service dog offers me choices. Because I can choose what needs doing in the moment based on what and how I’m doing and what I need, and I can ask him to do that particular thing, and he can do it nearby or at a distance. He can get and bring the thing or person I need. Because he can think, and he can move all on his own, without a joystick. Though he does bring me a lot of joy.

– Sharon, the muse of Gadget, and Barnum, SD

*I believe that wheelchairs and other mobility aids are generally preferable to service dogs for ongoing mobility needs such as balance, walking, etc., because frequent use of dogs as mobility aids can be physical damaging and dangerous to the dog. If you are a full-time wheelchair user, I think it is better to use a powerchair than to have a SD pull a manual chair. If you need walking assistance frequently, a cane, walker, or chair is probably a better bet. However, sometimes you need both. For example, when I have had my powerchair break down, I have used a manual chair with a SD helping to pull it as an emergency backup measure.

**I realize that some people use human assistants or canine assistants or AT instead of one or the other or both of these, and I fully support everyone having the options to make these decisions because no two situations are the same. Everybody’s situation is unique. For example, I know a lot of guide dog partners who do not use a cane because their guide dog is a far superior navigational aid, and I also know people who use both when training a dog or when an issue arises and people who prefer a sighted aid (person) or a cane. And all of us who partner with assistance dogs have times when we cannot use our dogs — when they are sick or have died or have retired — and we have to make do with AT or people in the meantime. I know people with physical disabilities who use SDs so they don’t have to rely on PCAs or certain types of AT, and I support that, too. In my case, I rely on all three, and I am fine with that, too.

Insomnia and Creativity and Neuroatypy

I haven’t slept since yesterday afternoon. Before that, I slept for two hours, from 2:00 AM to 4:00 AM. Before that, I slept from . . . well, I can’t remember. I can’t keep track of which days are which anymore, even worse than normal, because if I don’t sleep on Sunday until 6:00 AM Monday, does that count for Sunday’s sleep or Monday’s?

I’ve had a range of sleep disorders since I first was chemically injured in 1995. In fact, when I was falling ill, I remember having terrible nightmares, every night, and I didn’t know why. Then, as the CFIDS/ME and MCS got worse, I slept less and less until I was sleeping literally no hours per night. Thank god, a doctor gave me Elavil and that worked.

Over time, I had to raise the dose, but it helped a lot with sleep and with body pain, as I discovered the few times I had to go off it. And I’ve added other things that help a little. And I’ve tried everything that’s been available for sleep and most of them, I have one of two reactions: 1.  No reaction. As if I’ve taken a sip of water. I can take twice the normal dose and feel nothing. I’m wide awake!  2. A paradoxical reaction. This is when you take, for example, Valium, and your body’s response is shaking, sweating, anxiety, racing thoughts, pounding heart. Well, you get the picture. Not sleep-inducing.

I’ve been on a vampire-ish schedule for many years. It’s common in people with CFIDS/ME — we don’t “do” morning. But after getting chronic Lyme disease and coinfections, it’s gotten worse and worse. Lately, my body seems to have written a contract which I don’t remember signing that if I fall asleep before 5:00 AM, I will sleep, at most two or three hours, and then I will be awake for another twenty-two or so.

Sadly, the less sleep I get, the more pain I’m in. The more pain I’m in, the more exhausted. The more exhausted, the more shaky, mobility-impaired, voice-impaired I am. And all this isn’t even touching on the cognitive impairment: the brain damage from the carbon monoxide poisoning. The brain and neurological damage from Lyme and babesia and Bartonella. These days, I can’t read. Not only can I not read books, I can’t even read long emails. I can’t remember words I used to know. I keep wanting — desperately, desperately wanting — to blog about how torturous it is to be a writer who is brain injured and can’t read and can’t even explain why I can’t read. Can’t explain why my cognitive impairment has gotten so much worse. For a year, I’ve started draft posts here and at my writing blog, about my cognitive impairment and how it affects my writing, and I never finish them.

And what makes the level of illness and dysfunction and cognitive impairment I’ve been dealing with even worse is that I now have the desire to write again, to be creative again, which Lyme stole from me for a few  years, but I can’t access my creativity. That spark. The place where leaps happen in poetry or fiction. In world-building. In taking risks.

Instead, I follow this bludgeoning, insistent mundanity, of persuasive arguments about disability rights or descriptions of training regimes — essentially, “What I did (with Barnum) today.” And I wonder where the other part of me has gone, and if it will come back.

One thing I have noticed: Often, when I do my best writing — my most risk-taking, creative writing — is when I am really sick, and often in the middle of the night. But it’s a certain kind of sick. Like, a certain migraine state, if I can write through it, can produce good work. A certain level of disconnection from my body required by, or a result of, pain and exhaustion and cognitive strangeness.

These are usually short pieces, because I’m too sick to write anything long, and if I do attempt something long and don’t finish it, when I go back to work on it in my “normal state,” I can’t recapture the spark. It just sits there, unfinished. I have possibly hundreds of such pieces.

But, if I’m too sick — if I’m really, really sick — I can’t write at all, and I don’t want to write at all. I have no creativity. I don’t care about anything except the amount of pain I’m in and just trying to do as little as possible — not to breathe or swallow or shift in bed — to get through it. I have no leaping thoughts. I have no desire.

Then, a couple of weeks ago, I read a great article in Scientific American called The Unleashed Mind: Why Creative People Are Eccentric. I’ve never considered myself exceptionally creative nor exceptionally eccentric. I think I’d score above average on creativity and possibly a bit on eccentricity, but nothing like the examples they gave. However, most of the focus of their research was that the connection between creativity and eccentricity is people who tend not to filter out a lot of sensory stimuli and other information that we mostly consider “background noise.”

To me, this fit with the state I’m in sometimes when I’m sick enough — especially when something neurological is going on, like a migraine, which is believed to be a form of slow seizure, that that shifts my thinking. And it fits why I haven’t been having these spells of creativity — because now, when I’m sick, I’m too sick to write. And my brain is too impaired most of the time to have that plasticity to leap when there are opportunities. It’s filtering out too much. Not just what normal brains filter out, but additional stuff — words, memories, concepts.

And then, the bout of really extensive insomnia. It’s coming up on 24 hours since I’ve slept. And I entered two flash fiction contests today. I haven’t done any creative writing for many months, and now, when I literally almost fell over, because my legs gave out when I was transferring from chair to bed, because my muscles are so shaky from exhaustion, I could slip into that place where I could let go, and my thoughts took me places.

Are they GOOD places? Is the writing interesting or worthwhile or actually creative? I have no idea. I’m too exhausted to have any clue. But I did it, and that’s something. And it will probably have to be something I remember for a good, long while, because when I crash at the bottom of this crash, it’s going to be a severe, severe crash. I can feel it in the way  my body is locking up. So I have a certain desperation to get this post out before it does.

If you want to read what I wrote today, I entered the #TuesdayTales contest at GlitterWord, over which you have no control of the outcome. And I entered my original and favorite, #FiveMinuteFiction — and I’m a finalist! So, you can actually vote for me, if you want to.

And now I will go to sleep. I don’t know when you’ll hear from me again, but maybe there’ll be a leap somewhere between here and there.

– Sharon, the muse of Gadget, and Barnum, SDiT extraordinaire


Receive new blog posts right in your email!

Join 574 other followers

Follow AfterGadget on Twitter

Want to Support this Blog?

About this Blog

Assistance Dog Blog Carnival

Read Previous After Gadget Posts