Posts Tagged 'speech disability'

Retrieving a Fork with Food on It (Zen + Retrieve = Yippee!)

I’ve said all along that I wanted to train Barnum more and better than I did Gadget and Jersey. I wanted him to learn skills they didn’t know because I now need more types of assistance than I used to. And I wanted Barnum trained better because there were skills Gadget had that were good enough, but that were never really perfect. For example, Gadget was good at retrieves but lousy at combining the “hold” with other skills, like heeling or sitting or sometimes even waiting for the release (instead of just dropping the item in my lap).

One thing I never trained Gadget or Jersey to do is pick up silverware that had food on it without tasting the food. I just didn’t know how to communicate that part, because I didn’t know about doggy zen. Since dropped utensils often have food on them, this was a hole in our training.

Thanks primarily to all I’ve learned from Sue Ailsby’s Training Levels and the Training Levels list, I am a much better trainer now. I also owe some credit to Barnum for being harder to train than Jersey or Gadget, which made it impossible for me to be sloppy and take shortcuts like I did with them.

One of the ways Barnum is much better trained is with his “leave it.” I used the “puppy zen” approach to teaching this, and it’s an awesome tool to have in your dog training toolkit. (I’ve posted about zen plenty in the past. If you want to read some zen-related posts, click on the relevant tag or search “Zen.”)

We have been working on a default zen, which means that I don’t have to cue “leave it” for Barnum to know that he should not eat/sniff/touch/grab that thing/person/animal unless I tell him to. I wrote this earlier post on zen which includes a video (a captioned version and a noncaptioned version and a transcript of the video at the end of the post).

Recently we’ve also been working on combining zen and retrieve.

In general, I’ve been trying to widen Barnum’s repertoire of things he understands how to pick up, like big (wide) things, long things, heavy things, bulky things, flat things (e.g., paper), etc., as well as circumstances in which he picks things up (different rooms, outside, with other people around, with background noise like a video playing, over longer distances, with me moving, etc.).
I’ve also started combining zen/distraction with retrieving. I started leaving a treat on the floor and asking him to retrieve something while ignoring the treat. Over time I’d add more treats and/or put them closer to the retrieve items. Eventually I could put several treats under and around the item and still have him pick it up. The challenge was not with him snorking up the treats but with him being afraid to pick up an item that was within “the zen field.” (You can see the zen field at work in the video referenced above. If a treat was next to another treat that was also “zenned,” he wouldn’t eat it unless specifically cued to do so.)
Last Saturday he was doing really well with something we were working (I don’t remember what anymore) and for his treats I was using leftover cooked fish and fish skin that was very smelly and exciting to him. I was delivering the treats on a fork. I thought, “Hmmm.”
I got a clean fork and had him retrieve it. Then I smeared some fish juice on it and repeated. Then put a piece of fish UNDER the fork. And finally I used the fork I’d been feeding him from with a piece of fish speared on the end, and he retrieved it! (Without touching the piece of fish, I mean.) We did it a few times, including the fork ending up in different positions and having fish flying off it, etc.
In the following days, I tried it with pork and hot dogs. Each time, if I didn’t begin with review, he’d start toward the food end of the fork and I’d tell him leave it. But once I reviewed and he realized we were working zen AND retrieve, he’d switch to carefully picking up the handle end of the implement and leaving the food on the fork.
Today I finally made a video of him doing this, and I tried to show some of the steps leading up to it. It’s kind of a clumsy video. My voice wasn’t working, so we did it all without voiced cues, and he was not the most “in the game” he’s ever been, but hopefully you can understand what’s happening. (For the record, when I say, “Oops,” it’s not because he’s eaten the food, it’s because of the sloppy way he retrieved the fork which resulted in a piece of hot dog falling onto my foot plate, which he then went to eat, so I had to cue him to leave it.)
I am “signing” in this video, not speaking. I use the term “signing” very, very loosely because I am so out-of-practice signing that a lot of it is kind of incomprehensible mumbling from an ASL perspective, so the captioned version is as much for hearing folk as it is for Deaf or hard of hearing people.
You can watch the video (uncaptioned) below. . . .

The captioned version is here.

There is a transcript of the video below which might be of interest even to those who can watch the video, because there are some things you don’t see very well in the video that I explain in the description, like where the meat is, and that in the last retrieve the fork is right next to a piece of hot dog on the floor, etc.

Comments, critiques, questions, etc., all welcomed!

– Sharon, the muse of Gadget (she didn’t do this stuff with me! Boo!), and Barnum SD/SDiT

Video Description:

Sharon: I’ll show you how Barnum and I train zen (self-control) and retrieving.

Sharon picks up a fork.

Sharon: This is clean.

Sharon holds out the fork and Barnum takes and holds it in his mouth. Sharon grabs the fork in Barnum’s mouth and clicks and he lets go and gets a treat. Sharon tosses the clean fork on the floor and Barnum retrieves it for a click and treat again.

She spears a piece of hot dog onto the end of the fork and tosses the fork on the floor. Barnum moves around the fork warily. He picks it up but at the food end, so although he doesn’t eat the hot dog, when he hands it to Sharon, the hot dog piece falls onto her footrest. He moves to eat it. Sharon voices something that sounds like “Leave it,” and Barnum retreats from the hot dog piece.

Sharon: Oops. We’ll try again.

She holds up another fork that has a beef cube on it and throws it on the floor. This time Barnum picks it up by the handle. Sharon shows the fork to the camera so viewers can see that the meat is still on the fork.

Sharon takes two more hot dog slices and puts one on the fork that has the beef on it and tosses the other on the floor. Barnum doesn’t attempt to eat the one on the floor. When he turns and looks at Sharon instead, he gets a click and a piece of hot dog from her hand.

Sharon holds it for him to take, and then give back to her. She tries to hold it for him out to the side, but drops it instead. Barnum picks it up by the handle and gives it to her. Sharon shows the camera the pieces of meat still on the fork.

Sharon: Perfect!

Sharon throws the fork with the meat on it over next to where the hot dog is lying on the floor. Barnum retrieves it while ignoring the hot dog on the floor. Sharon clicks and treats him.

SD Training: “Bad Days” Provide Evaluation Opportunities

There’s a quote I like very much in Sue Ailsby’s books, Training Levels: Steps to Success*. It’s by Steve White:

“Failure” is just information. Thank your dog for revealing a gap in your training plan and get to work plugging it.

Taking this attitude makes me a better trainer, a happier and mellower person, and a more pleasant person for my dog and other humans to be around. Learning to actually adopt this philosophy has taken me many years. (Not that I am always able to have this perspective even now — sometimes I do get frustrated — but certainly I can see things this way much more often than I did in the past.)

This quote is in the explanation of testing. The Levels are a set of behaviors, divided into Steps, and each builds on the other. (Sort of like math, but much, much more fun.) So, before you can go to the next Step or Level, you test the one you’ve trained to make sure that you and dog are moving on with a firm foundation.

I have not been able to proceed quickly and efficiently through the Levels because I’ve been too sick, so we have done very little formal testing of Levels behavior. Instead, I have decided to focus on training these behaviors:

  • The behaviors I most need from Barnum on a day-to-day basis (service skills), and
  • The behaviors I can train most easily from bed or the toilet (or wherever I might be during the course of a day).

I’ll write more about how and why I’ve decided to focus on training like this in my upcoming post for the July Assistance Dog Blog Carnival which is being hosted by Brooke at ruled by paws. (And she will be giving a prize to one of the bloggers who submits an entry, which is another reason to go read the call for entries and write a post!)

Meanwhile, I thought I’d catch you up on how and what Barnum and I are doing by telling you about last Saturday (a week from yesterday). Saturday was a lousy day in some ways and a terrific day in others.

The lousy part was that I was in a very bad way, physically. It was probably one of the worst pain days I’ve had in a long time. It was the kind of day where I had to take several prescription painkillers in order to be able to sit up or move my limbs at all. Without pain medication I would have been reduced to lying in bed, crying, and unable to move all day. I couldn’t speak. I couldn’t brush my teeth. I needed help to eat.

It was terrific in that it was a chance to “test” where Barnum and I are in his ability (and interest) in assisting me. Here’s what I learned.

  • Barnum was very eager to work. Every time I called (using my “kissy noise,” which is how I call him when I can’t speak), he rushed over in eager anticipation of working (and thus, earning treats). Even though it was 90 degrees out, and he has a thick, black coat and hates the heat.
  • He retrieved my slippers for me about a dozen times because I take them off when I get in bed and then want them on each time I get out (even just to transfer to my chair to go to the bathroom).
  • I also learned that he seems to have learned my hand signal for “Take,” which surprised me because cues are Barnum’s weak point, and this hand signal is one I only introduced recently.
  • He opened and shut my bedroom door many times. He responds with the same level of reliability to the hand signal as to the spoken cue. With opening the door, he knows both and is eager and efficient regardless of where I am or what else is going on. With shutting the door, either he absolutely knows what I want and runs and slams the door (always if I’m out of bed and sometimes if I’m in bed). If I’m in bed, sometimes he is confident and runs to slam the door, while other times he’s unsure and requires shaping to go around the chair, get behind the door, and shut it. We are continuing to practice this one so that he becomes more certain of this behavior and cue. I still haven’t figured out the variable that makes the difference to him.
  • He picked up several things I dropped — pens, an empty saline flush syringe (no needle), dog treat bags — satisfactorily, including sometimes needing to go around my chair to get it, and then jump on my bed with it in his mouth to hand it to me.
  • He turned on and off the bathroom lights for me several times. He is very solid on turning on the light when we enter the bathroom. Exiting the bathroom, he still sometimes turns off the light and then immediately turns it back on again. So, “off” needs work.
  • He can hear me blow the dog whistle in my room when he is in the kitchen even with the water running and the vent hood on, but he doesn’t yet know the whistle means “come.” Sometimes he does, sometimes he doesn’t. We need to continue to practice the whistle as part of the “Come Game,” reteaching it from Level One Come.
  • He is completely solid on stand-stay/brace; he assisted with transfers from chair to toilet many times and with toilet to chair and bed to chair a few times.
  • He carried messages to, and went to get, two PCAs at different times. He is solid on the cue to get them, opening the door, and finding them. With one of them, he is solid on the whole behavior of open door, find person, nudge them, sit, wait to be sent back to me. With the other, he needed to be cued to nudge her on the first find. I am discovering that not all my PCAs are consistent in their responses to him — sometimes forgetting to ask for the sit or to ask “Where’s Sharon?” at the end, so I have now written up a step-by-step “how to” that they can refer to for “cold” retrieves (when we are not in an official training situation and neither Barnum nor they are primed to expect it). During a training situation, everyone already knows their jobs, but randomly using or testing this skill when neither dog nor person were prepared has given me important information on tweaking behavior for both people and dog. (You can see a video of this skill in this earlier post.)
  • He removed my socks a couple of times while I was in bed, which is a different behavior chain than removing my socks when I’m in my chair. It requires several positioning cues that are different — a lot more communication is required than for sock-removal while I’m sitting.
  • He opened and shut the refrigerator and shut cabinets and drawers. This all went very smoothly. Both cues and behaviors are well established. It tells me it’s time to start hanging pull-cords on some of the cabinets and drawers I might want him to open so we can start working on that behavior, too.
  • I realized that while he has learned most of the behavior for pulling down my big, heavy comforters, we have never worked on him pulling down my lightweight summer blankets or sheets. It would also help a lot if he could learn to help me pull off long pants. These are new items on the “to do” list.

There are probably a few other things I’m forgetting because by now it’s been a week, and I can usually only retain this type of information for a few hours. But, my overall point is that now, on a day when I really need him, he is actually helping me. We really are a team now. There are some skills he doesn’t know yet, or some situations in which he is still inconsistent, and those are more obvious to me on my “bad days,” too.

Not only do I now want to thank my dog for the information when he “fails,” but I can also thank my body on the days it “fails.” Sometimes it feels like there are three of us doing this training process: Barnum, me, and my body. The challenge is to coordinate the needs and abilities of all at once.

– Sharon, the muse of Gadget, and Barnum, home-style SD/public SDiT

*Should you want to buy the books, which I highly recommend, you can purchase the paper version here or the electronic version here.

QuickPress: Workig Dog

Today is one of those days when I woke up and couldn’t move much or speak. Here are some of the ways Barnum has helped me today.

  • Helped me take off turtleneck shirt. (New task that still needs a lot of work.)
  • Brought my PCA to me — perfectly. (Opened door, ran to her, nudged her, and led her back to me.)
  • Pulled off my socks.
  • Helped with bathroom transfers.
  • Shut bathroom door.
  • Took three messages to Betsy.
  • Pulled covers down. (Not all the way, but enough to be helpful.)
  • Opened and shut the fridge.
  • Shut bedroom door.

I think I’m forgetting some things, but the main point is that he is actually helping me now on days I need it. It’s good to be able to practice things and see what is really working and where the holes are that need further training.

Waspish Wednesday: Please Don’t Comment on My Voice!

This post cross-posted at ChronicBabe.com.

Or, Behavior Modification (Training) Works on People, Too!

I’ve been disabled by chronic fatigue syndrome and multiple chemical sensitivity since 1995. However, when I became infected with Lyme disease and two other tick-borne diseases in 2007, I developed several new symptoms. One of the strangest and most difficult has been intermittent vocal cord apraxia, which means that sometimes I can’t make voluntary sounds, most notably speech.

The amount of voice I have occurs on a spectrum from total inability to speak, to severely affected (like a cerebral palsy accent), to scratchy and hoarse (like laryngitis), to completely normal. Most of the time, my voice slowly improves over the course of a day: upon waking, I can’t make a peep, but by nightfall, I can talk a blue streak. Other times, it’s very sudden: at noon I can’t say a word, but by 1:00, I speak fluently. Conversely, I may be talking fine until a chemical exposure or an exertion (e.g., taking a bath) steals my voice in a flash.

Frequently, when I can’t speak, it’s the sign of a “bad day,” when I’m also immobilized by severe pain and fatigue. However, there are times when I can’t voice, but I’m not feeling worse than normal — as well as days when I can speak, but I feel like hell.

Unfortunately, most use my voice as a barometer. Not only do they assume that if my voice sounds good, I must be feeling good, they also jump to the conclusion that I am recovering or have been cured! Virtually everyone* to whom I say, “Hello,” on the street or the phone, immediately responds with comments like these:

  • “Hey, you’re talking! You must be thrilled!”
  • “Your voice sounds so strong today! You sound really energetic!”
  • “Oh dear, I thought you were getting better. . . .” (This is said with deep disappointment, followed by an awkward pause, then a hurried escape.)

I usually just grit my teeth and change the subject as fast as I can. I understand the drastic changes in how I sound can be confusing, especially to new people in my life, but for people who have experienced the vagaries of my communication issues for years? In those cases, I want to scream, “Shut up about my voice! Just ignore it and treat me like a human, not a symptom! Stop guessing what it ‘means’!”

I don’t scream, especially because I know that these remarks — particularly the “your voice sounds terrific!” variety — are intended as compliments. Nonetheless, at a certain point, I decided to ask people not to start every conversation with a discussion of my voice. I usually say something like, “I know you’re trying to be supportive and encouraging, but I’d really prefer if you didn’t comment on my voice. You see, almost everyone does this, and it gets really tiresome.”

The response is usually a surprised and confused pause, followed by profuse apologies. I interrupt this, too, saying there’s no need to apologize, that they didn’t know, and that it’s just information I’d like them to have for the future. The best response is a “thank you for telling me.” This tells me they have not taken it personally. So far, this strategy is 100 percent effective; if I make this request, it is always honored.

Everyone has their own preferences about whether, how much, or with whom they wish to discuss their health or functioning. I personally restrict such discussions to family, and close friends who are also disabled. I know I’m not alone in my struggle. Like others with disabilities, I’ve had people comment on, and try to judge the state of my health based on, my use or non-use of various assistive devices (wheelchair, oxygen, filter mask, service dog) or my behavior (standing, sending an email, writing a post, leaving the house).

My advice to chronic babes who’d like others to ignore perceived clues to the vagaries of your condition? Tell them! My advice to those who I speak to on the phone or on the street? Ask about my dog training, writing, or opinion on the weather — just don’t mention my voice!

*The exception to this are those who see me, day in and out, with and without voice, and are used to its vagaries, such as my partner, my personal care assistants, and a small number of friends who are also disabled.

Barnum’s First Service Skills!

I’ve been really sick lately, so not up to much of anything, including blogging.

Here, for your viewing pleasure, an almost wordless blog!

Barnum’s first service skills — shutting cabinet doors. And because we were on a roll, I added shutting a couple of drawers, too.

Please note: My voice was not working when I made this video, so what little language occurs is in (sloppy, distracted) American Sign Language. If you just want to see the action and don’t care about what I’m saying, watch the YouTube version, below.

If you want to watch the captioned version, please view the video at dotSub.

Enjoy!

– Sharon, the muse of Gadget, and Barnum (That’s Mr. SDiT to you)

P.S. Instead of doing a transcription on another page, for those who don’t watch videos, here is a transcript and description of the action in the video:

Title: Barnum’s First Service Skills: Shutting Cupboards & Drawers

Sharon: Today I’m showing you Barnum’s first real service skill.

Sharon laughs as the sound of cabinet doors slamming is heard.

Cut to Barnum shutting a cupboard without being asked.

All the cupboards are natural pale solid wood, poplar, with shiny chrome-colored round metal knobs.

CLICK!

Barnum returns to Sharon for a piece of meat. Sharon laughs.

Sharon: He’s ready! Let’s try again.

Cut to Sharon in the kitchen, opening a wood cupboard. Barnum is so eager to get his nose in there and shut it that Sharon can’t open the cupboard.

Sharon: Excuse me!

Barnum backs up but is still in the way. Sharon cues him to sit, which he does.

She opens two cupboards. He shuts them both, getting clicks and treats for each.

Sharon moves to a cupboard where one door opens against a wall.

Sharon: This is a hard one.

Barnum moves in too close again. Sharon and the camera person laugh.

Sharon: Excuse me.

She cues a sit. Barnum sits. When both doors are open, she cues, “Shut the door.” Barnum closes both easily and gains two clicks and treats.

Sharon moves to the other end of the kitchen, next to the stove. She opens a cupboard under the sink that partially blocks a very narrow cabinet door next to the oven, which she also opens. Again, she has to ask Barnum, “Excuse me.”

He right away shuts both doors. After clicking and treating, Sharon gets another handful of meat from a tray on the counter and goes to a large pantry door, as tall as the refrigerator and almost as wide. This door has no knob.

Sharon: This is a hard one.

She opens it. Barnum goes right over and shuts it on the first try. Pleased and surprised, Sharon vocalizes, “All right!”

Sharon [to camera person]: Want to try drawers? Come around here, we’ll do this one.

She opens a drawer that is nose height for Barnum. The drawer is large and filled to the top with pot holders and cookbooks.

Barnum shuts it with one quick nudge. Sharon clicks and treats.

She opens the drawer beneath it, which contains empty plastic containers. It comes to about knee height for Barnum. He shuts it with a flip of his nose. Sharon clicks and treats.

Sharon looks at the camera and raises her hands in the air, making the “applause” sign and saying, “Yay!”

The Dance Begins Again

Barnum is one year old now, and I am constantly pleased and impressed with his progress, and mind-boggled and discouraged by discovering new (and seemingly bizarre) problems. (Yesterday, Barnum refused to walk through mud, which he has walked through many times before in his life. So. . . . Huh?)

I love Barnum for who he is. (He is exceptionally lovable.) I probably won’t know for a very long time, however, if he will ever approach service-dog readiness, let alone Gadget-ability.

So, what worked so well with Gadget? What made him my yardstick?

He was a training machine, for one thing, and then we worked together so well as a service-dog team. We really had “the dance” down-pat. Not that we were perfect. We had our rough edges: Skills I trained at the end of his career, as new needs arose, were not 100 percent. I never shed my “clicker dependency” of not trusting that if I didn’t have it in a novel situation, I wouldn’t get what I needed from him. Gadget hated my van, etcetera.

Now I have introduced a different dance — Sue Ailsby’s “Leading the Dance” protocol — with Barnum; because I foresee trouble if I don’t change our routine. In a nutshell, he’s in that bratty, teenager stage where he will try to get what he wants, when he wants it, how he wants it. Which is a typical teen thing, and a typical dog thing, and a typical, um, living organism thing, too. So, who can blame him?

Unfortunately for him, that lifestyle doesn’t fit in with my plans.

Part of the problem is that he is bored and under-exercised. I’m working on that. It will really, really help a lot when I get my bad-ass powerchair working, too, so we can go on long, winter walks.

Pchair with headlights

Since my chair is made of used, recycled parts, it hasn’t been clear how to proceed with replacement parts.

You’d have thought I’d have had it fixed by now, but there always seems to be some new minor crisis to contend with that prevents me from wrapping my head around the chair repair issue.

What does “The Dance” Barnum and I are doing now entail? Keeping him leashed to me throughout my waking hours (“the umbilical cord”), singing him a silly song (really!), practicing eye contact, obedience, and downs (all stuff we were already doing) and various other odds and ends. One key factor is to make my PCAs less exciting to him, and to make me the center of his universe — more than I already am.

That’s the nuts and bolts. The feel of it, though, is actually quite a bit like trying to drag an awkward teenage boy onto the dance floor: He doesn’t want to dance, it’s stupid. Why can’t he just hang out with his friends? Oh, well, actually, maybe this is fun. Maybe I’m an interesting dance partner. But no. “This is so weird, do I hafta? Oh, now that I’m focusing on the steps, actually, this is pretty cool. I’m awesome.”

Gadget was more like one of those young ‘uns who runs out onto the dance floor and has no idea that he is a hot mess. He yanks you here and there and flings you about, having a great time, with no idea that you’re not. But, he’s also got the rhythm in him, he just needs some tutoring, and he’s willing, very willing, if there’s something in it for him. He discovers he likes to move and that his partner is actually quite cool.

Over the years, “dancing” together every day, Gadget and I were like an old, married couple. We anticipated each other’s moves and moods. Was the relationship perfect? Of course not, but it worked.

To see how Gadget and I worked together — the smoothness of our dance as well as our stumbles — video is the best. I’m incredibly grateful that Betsy and I were able to make a video of Gadget and me showing off many (but not all) of his skills. My friend and former PCA, Ryan, put the video on youtube for me, divided into two parts.

In this captioned video, Part 1, Gadget retrieves the phone, brings water from the fridge, helps with falls, and more.

Here is the transcript of the video.

Now, for the exciting conclusion: Part 2! In which Gadget alerts me to the oven timer, turns off lights, opens and shuts doors, delivers messages, and more.

Here is the captioned version.

Here is the transcript of the video.

Will there come a day when Barnum and I can waltz as well, or better, than Gadget and I did? It’s possible. I’m listening for the music. . . .

-Sharon, the muse of Gadget, and Barnum

How I Sleep (Or Don’t): Powerless/In the Dark

Today’s post is for the December edition of the Disability Blog Carnival. This month’s host is Dave Hingsburger at Rolling Around in My Head.

The carnival is scheduled to go up on December 21 (the longest night of the year, for those of us in the Northern Hemisphere). The Disability Blog Carnival always makes for interesting reading, so do check it out.

Dave’s topic, and attached metaphors, are beautiful and inspiring. Here is a tidbit:

The theme is ‘dark nights of the soul and what gets you through them’ … I’d like stories and posts about how you’ve survived those times when it was ‘darkest before the dawn’.

A couple of weeks ago, I posted the first part of this series,[1] about how I was sleeping a year ago, when Gadget was sick, then dying, then gone. Most of it was written, but not published, in February, when it was all still very fresh. The time it describes is definitely one of the “long, dark nights of the soul.”

I have sleep disturbances and insomnia from multiple illnesses; sleep issues have been part of my life since 1995. However, there are definite “up” periods and “down” periods. Insomnia-wise, some times are worse than others. The last two years have been a long stretch of “worse.”

Until I started writing today’s blog, I didn’t realize why my sleep has been particularly bad the last couple of years, and especially very recently.

Maybe people who aren’t as forgetful and confused about dates and times as I am would have figured it out — even seen it coming — but the cause seems to have been the “slumbering giant” in my consciousness.

Two years ago today, December 12,[2] 2008, The Northeast Ice Storm hit. The weight of the iced trees snapped power- and phone-lines like dental floss. Even cell-phone towers came down.

powerline_ice

I never saw the damage, I just lived its effects.

Due to my disabilities,[3] I was stranded in my house (in my bed, actually), unable to evacuate, for a week.

A week without power: no lights, no phone, no water, no internet, no plumbing, no heat.

A friend with the same disabilities as I have, was even more severely affected by the storm, ending up in the hospital — an experience from which she has yet to recover.

After it was all over, my friend described the beautiful and surreal landscape she saw through the ambulance windows. She also emailed me a picture of herself holding up a newspaper from her hospital bed. The huge headline reads, “Powerless in the Hilltowns.” That pretty much summed it up.

Ice storm trees - photo by Judy Stalus

An example of the dazzling landscape many described. Even now, though I see the beauty, I'm disconnected from the magic of such images; they evoke anxiety, not enjoyment.

[Photograph by Judy Stalus. Used with permission.]

Those were longer, darker nights than I’d ever known. I wrote out my will by flashlight in case I didn’t survive.

What got me through, in addition to my PCAs, my partner, Betsy, and my (now former) best friend with whom Betsy stayed, was “capital-G”-Gadget — my service dog and love of my life — and a lot of “lower-case-G” gadgets:

  • My book on tape machine
  • My iPod
  • My flashlights
  • My TTY[4]

Wearing my warmest clothes, covered in all of the blankets in the house, I kept them all within reach.

Little things became hugely important, such as batteries.

I turned a flashlight on as soon as it got dark. I left it on until it was light, regardless of whether I was awake or asleep. In addition to the flashlight that was on, I kept a second one, with fresh batteries, at hand. When the first one grew dim, I’d turn on the second, then replace the spent batteries of the first.

When my talking-book machine’s or TTY’s batteries lost their charge, I panicked. I’d lie there, obsessing over when Betsy would be able to come and take it away to recharge it, and if I’d get it back before dark fell again.

During the day, I limited how much “juice” I used with anything that ran on batteries. I was very careful never to expend the charge on more than one device at a time. At night, I doled out the time with my book machine or iPod, forcing myself to take breaks to make them last longer.

Although, due to sound sensitivity from Lyme disease, I have not usually been able to tolerate music in the last few years, there was one song I relied on during those too-quiet nights.

I’ve never admitted this to anyone before, except Betsy: the Beatles’ song “Let It Be,” helped me get through. I listened to it at increasing volume, the ear buds vibrating, over and over. When the iPod died, sometimes I’d just hum it and cry.

Why does relying on “Let It Be” feel like such a dirty little secret? Partly because I’m Jewish, and the song, if you don’t know much about Paul McCartney, seems to have a very Christian tone.[5] Partly because finding sustenance in a song, especially a pop song — especially a Beatles song — seemed such a cliché. (But — “Whatever gets you through the night, it’s alright” — isn’t it?)

Honestly, in the middle of that seemingly endless night, being Jewish, having no connection to “Mother Mary” — none of that mattered. It’s pretty much a Buddhist concept, letting it be, though it seems like all religions have some form of “turning it over.” When you’re powerless, there’s really nothing else you can do but turn it over, let it be.

Unfortunately, life didn’t get better after the emergency ended. It got worse, severely and quickly.

Norman_Picture

My dear friend, mentor, and colleague, activist Norman Meldrum (with Beatrix Underfoote). Norm died January 6, 2009.

Within three weeks of the storm, as I struggled with the PTSD it had caused, one of my best friends died, my best (and only nondisabled) friend ended our friendship in a nasty way, and my therapist terminated with me (largely because she refused to get a TTY).

A few months later, Gadget, my service dog, was diagnosed with cancer. Then I lost more friends — some to death, some to abandonment — then Gadget, until it felt like I was pared down to a numb nothingness.

I think the piling up of too much loss and trauma in a short period explains why my sleep has been particularly bad for two years.

It’s not just the chemical injury, chronic fatigue syndrome, and tick-borne infections interfering with my body and brain’s sleep cycles — though that certainly is enough. At a deeper level, it’s also that part of me is afraid to go to sleep because the literal and figurative darkness and stillness of night and sleep are too reminiscent of the outage.

Indeed, I can’t tolerate total darkness, or true quiet, now. At night, the sound of the air filters blowing and freezer humming, the shine of the LED lights of my clock, and the glow of my sleeping laptop give me comfort.

If there’s an outage, even during daylight — even during the summer — I panic. I never know how long it will last. I now keep lots of batteries, along with glow-in-the-dark flashlights, mylar blankets, and hand- and foot-warmers, next to my bed. For a long time after the storm, I kept a flashlight in my bed.

Lately, my sleep debt accrues with every day.

It started in November, with the anniversary of Gadget’s death. Grief hit me hard, kept me awake, dragged me to sleep during groggy afternoons, then broke me open again when I should have been sleeping.

However, even as the grief recedes, I continue not to sleep. In fact, as much as I long for sleep, I keep fighting to stay awake. It took me a long time to become aware that I was doing this. After all, if I’m desperate for sleep, why would I want to stay awake until dawn?

Norm, Gadg, and me

A happier time: Gadget and I meet Norm in Maine for the reading of my work he organized.

I now realize that it’s because some part of me recognizes these short days as the same natural patterns that occurred during the power outage. That wisp of panic urges, “Keep the lights on. Don’t stop working at the computer. Write; make sure people know you once existed. Live through the night.”

When gray light starts seeping through the curtains, I feel my body relax and begin to give way to sleep.

Of course it’s not a good coping mechanism. Sleep deprivation drives up my pain in a very predictable manner, which interferes with all other forms of functioning: speech, movement, thought.

Lack of sleep weakens my immune system, which is under the massive burden of fighting multiple infections, in addition to being upregulated for two decades, overreacting to foods and chemicals. Not sleeping also brings a host of little irritations: grouchiness, (worse-than-usual) cognitive problems, emotional brittleness, a continual buzzing in my head, and dry, itchy eyes, and on and on.

Nevertheless, there are times when I make peace with the insomnia, when I can look into the teeth of a long night of wakefulness with equanimity, even eagerness.

  • When I’m feeling antisocial or my moods are being affected by “the bugs,” and I think it’s best for all involved if our interaction is kept to a minimum. (This works even better if I can manage to sleep when others are awake, too.)
  • When I’ve gotten sleep during the day, and I know I won’t be able to fall asleep anyway, so why bother trying?
  • When I can write, which has been such a rarity for so long that I will give up almost anything to have that part of me back. (Especially since some of my best or most successful pieces were written between 2:00 and 5:00 AM.)
  • When I know I’ll have to wake up early anyway, so there doesn’t seem much point after a while in catching those one or two hours of shut-eye.
  • When Barnum has both an appetite and an attention span, so I opt to train instead of sleep.
  • When I’m hungry, which keeps me awake, so I distract myself until someone can make me a meal.
  • When I have to pee, which keeps me awake, so I distract myself until I can get to the bathroom.
  • When I’m in too much pain, which keeps me awake, so I just lie still and wait for the painkillers to work.
  • When I’m writing a blog that helps me make sense of it all.

Peace.

-Sharon, the muse of Gadget, and Barnum (snoring away)

Footnotes:
[1.] Originally I planned to write two posts about sleep, but working on this post took me in an unexpected direction, creating a third piece. Since I seem to have a lot to say about what underlies sleep — or lack of sleep — in my life I’ve decided to turn “How I Sleep (or Don’t)” into an ongoing series. Look for other new series, as well. (I’ll also pick up the thread on some I’ve dropped, such as Barnum’s training logs — lots of developments!). Back to post.

[2.] I started writing this post a few days ago. I actually do know today is not the twelfth. Back to post.

[3.] CFIDS and Lyme made me too sick to be moved, but the real barrier was MCS, which meant that no shelters — neither the homes of friends nor disaster shelters, such as fire stations, were accessible to me. In fact, partway through the crisis, I located a friend who lived nearby who also has MCS and CFIDS, who was hypothermic and desperate, alone in her home. She stayed in my bedroom with me until her power was restored. Back to post.

[4.] Even though there was no phone service for most of that time, I used the TTY to communicate when it was too dim for Betsy or my PCAs to see my lips, gestures, communication board, or signs. Back to post.

[5.] During the time of the outage, I didn’t know that the “Mother Mary” in the song refers to McCartney’s mother, Mary, who died when he was a boy. Back to post.


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