Posts Tagged 'communication disability'

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.

life w/lyme, mcs, cfids: a different kind of typical atypical

for an MCS, Lymie, CFIDSer blogger training her own service dog.

i’ve been trying to post every day, partly bec i have so much to say and partly bec my stats go way up when i do, and that’s just so reinforcing!

but when u have lyme and cfids and u overdo by blogging, tweeting, posting on FB, etc., and/or train your dog, then u crash.

this is the other side of the typical atypical day coin. a typical day when i’m super super sick, which is not my typical day anymore.

today is not quite a stuck day but it’s damn close. it’s the kind of day that often follows a good day, like the ones i wrote about yesterday and the day before.

can’t get out of bed (move legs) on my own/transfer/go to bathroom, feed myself, brush teeth, etc.  also can’t speak.

this used to be my typical day, when my lyme was bad. now it’s what happens if i overdo or have chem exposures or don’t get enough sleep, and i have done some of all of that in the past week. then i way overdid it and shaved barnum down last nite w/betsy. i knew i was ovverdoing, as the pain and jelly legs and vertigo set in during and after, but the ticks have  been so bad, it needed doing and this was the only time, so i just hoped i could bounce back.

so i was long overdue for a slapdown. and here i am blogging, which i shdn’t be.

but i have a lightweight cordless keyboard in my lap, my elbows bolstered, and reclining. i can’t lift a  fork of watermelon into my mouth, but i can type.

i can’t say, “blog,” but i can type.

i’m blogging because it’s hard to be stuck in ur brain, unable to speak, surrounded by people who don’t know asl, in pain, etc. i’m blogging because i want you to know what it’s like to have these illnesses, which you never will as long as i blog because that gives a fall sense of how functional i am. the act of blogging belies that i’m too sick to blog.

but i want you to  see wha hppens on the days i don’t blog,or i do but i shdn’t. in fact, when i was writing this i kept abbrev and making typos and fixing it but i have decided now as i finish this up (have  done several sessions w/rest between,jumping around) to leave them bec its so much harder for me if i have to move my fingers off asdf  jkl;

i have already fixed so many typos, so many wrong word choices because my brain doesn’t always connect to what my fingers are typing (e.g., if i think “taller” and right “father”). it’s so hard fo rme to leave the errors — i keep fixing them! – but i want u to see the reality.

my pca fed me watermelon and my protein drink, which we did in shifts, over sevaral hours — it is exhausting bec of chewin g and swallowing, bec if she doesn’t put it right directly into my mouth w/out pausing or waiting for me to make minute stretches forward, it’s even more exhausting. and i can’t tell how to do it diff bec i can’t  talk and it’s too exhausting to try to explain bec nobody who has ever fed me has understood these nuances anyway.

and typing or swallowing or chewing gives me palpitations, makes me dizzy, makes me pant. and breathing becomes more of an effort — the diaphragm moving, the rsise and fall of chest, those are all muscles working.

this is lyme and mcs awareness, too (and  cfids, even if it’s not cfids awaereness month)  — the days when u can’t do most things at all and what u do is a huge struggle. this is so much better than what used to be a typical day, where i wdn’t be able to write this blog at all. when i couldn’t  move my hands sometimes. today i can flop them around a bit, i can click, and i can type , as long as my arms are supported.

being a lyme survivor who is also an assistance dog trainer means overdoing it to try to protect barnum and myself from ticks, from further infection, which means making myself sick, doing too much.

these reminders are good for me because last night in the glow of my overfunctioning adrenaline rush, i thought, ” i really don’t need to be teaching barnum to shut and open cupboards or the fridge or all sorts of other skills i’m planning because i’m doing so well now. but it’s better if he’s overtrained just in case.”

then, today, i needed to pee, and my pca was shopping, and i wished so much that barnum knew how to help me with transfers. and he needed to pee, and i couldn’t let him out, and i wished he knew already how to open and shut doors on cue. but not yet. so we waited 45 mins for my pca to get back.

and i ran out of toilet paper after my pca left, and i knew it was in the cupboard five feet away, but barnum doesn’t yet know how to open and retrieve things from cupboards, and there it is — skills i want to teach for the days i need them, all while hoping i never need them, some part of me believing i will never need them and some part of me remembering all the things i needed gadget to do, some of which i’d trained him for and some of which i hadn’t, when i got lyme. reminding me that i can never trust that i will never  have a day liek that (liek this) again.

he did something interesting today. my pca came in and asked him if he wanted to go for a walk, and instead of bouncing around all happy and heading right fo rthe door like usual, he just looked over at me, which was odd. and i thought, does he know i’m sick, and he’s weighing how much he wants this walk against worrying about me?

i don’t know. i could be projecting. but i’ve never seen that before. sure as heck gadget would  never have done that! but barnum is a very sensitive guy, so i’m not sure.

unfortunately, the nurse had to come today to change my dressing. we were supposed to do a blood draw, but i guess even my blood is too exhausted to move because we couldn’t get blood return.

having CFIDS means i’m too exhausted to have facial expression, so i look like i’m angry or don’t care, when really my facial muscles are too tired and weak.

having lyme means i’m in so much pain that i can’t move 90% of my body because the pain and weakness just takes away my ability to move. it’s hard to get this across:

the nurse (photos below) said, “ur in a lot of pain, huh?” and i nodded, and she said, “u haven’t taken your pain meds today?” and i moved my mask so she could read my lips and said/mouthed, “no i did take them, that’s how come i’m able to be out here” (not in bed), but i don’t know if she understood me bec sometimes when people don’t understand they just nod and act like they do bec they don’t want to make u repeat.

but i always desperately want to be heard and understood, so i signed, “understand?” but of course she doesn’t know asl, but she nodded, so i have no idea if she understood my question.

Barnum lies on a black yoga mat next to Sharon, who is in her powerchair with the back reclined all the way and her feet slid off the footplate. She's wearing a large white mask covering all of her face but from her eyes up. One arm is hanging over the side of the armrest, the other is outstretched on the table where a nurse in a medical mask and gloves is changing Sharon's PICC line dressing.

Nurse visit

i sepnt most of the appt w/my eyees shut and reclining as much as i could, but of course i also wanted to use it as training oppty so i clicked and dropped cheese onto barnum’s mat, but then that was too exhausting so my pca stood in front of mat and dopped cheese after i clicked. i have a box clicker with a light touch.

having MCS makes nurse visits a really big deal. u might notice i’m wearing a mask and a black air  filter on a cord around my neck. that’s because even tho my nurse tries to be fragrance free, she lives with people who use fragrance, so it gets on her. and she sees other patients in their fragranced homes. after she leaves, the whole house reeks, and we keep all the doors shut we can so it doesn’t get into the bathrooms or my bedroom. she sits on a wood chair, never on the sofa or putting her stuff on the sofa, because it would absorb the smells. and i can’t let her into my room bec she would contaminate it, and i need a place i can rest and breathe.

now my pca has brought me “lunch” even tho it’s evening bec i forgot to talk to her abt food until the end of her shift, bec i’m so out of it, and now she’s gone and i’m doing better but not well enough to really be able to food myself, so i try to prop the plate on my chest and overbed table and eat with my fingers a few pieces then put plate on bed and rest.

barnum was on my bed, which he’s not supposed to be when i’m eating. the rule is he gets ignored while i’m eating unless i ask him to do something or he alerts to something, but i have no way to tell him to get off, so i just let him be there. besides, it feels comforting. but this is another reason why i am not the consistent trainer i  wld want to be: sometimes i’m not able to be consistent. i know what i’m doing wrong and there’s nothing i can do about it.

i just realized something. i want u to know this bec it’s  important.

i don’t want u to feel sorry for me. i hate pity, honestly. I want to be KNOWN.

because actually,in this moment  i’m happy. maybe that sounds  hard to believe, but really, despite being so sick today, it’s not a bad day. i’m enjoying watching and listening to the birds ouside my window (have a blog post i’ve been working on about birdwatching and lots of photos.)

i feel content. the pain is not as bad now. i have had help mos to fthe time i needed it today and my night pca will be here later.  barnum has been adorable and actually did a few desirable behaviors. i’mnothaving bad payback (reaction) from the nurse visit exposures, partly bec i have all the windows open bec it’s warm today.  a barred owl has started its strange call (they are active during the day – strange birds).

i feel satisfied and glad i was able to do this blog.

i got to listen to a  phone call  (it’s a class — NVC — and i couldn’t say much but i was included, nonetheless; theyh’re my community, everyone else is chronically ill, and i can just listen and be part of it and know i have companionship). i got to tell a friend i love her.

and iknow this will pass. this is my body wisely saying, “sharon! chill the fuck out! stop doing so much! lie around and do nothing! stop thinking! stop training! stop  blogging! stop tweeting! rest and sleep as much as u can. dammit.” after i post this, that’s what i’ll do. because lyme and mcs (and cfids) awareness means people knowing that those of us who enter thepublic sphere in any form, including internet, are making a CHOICE to do that and not do other things, or to suffer physically as a result.

and it means trusting u all, which i do, ur wonderful, to still be there when i get back when i am not posting everyday and trying to be someone i’m not, someone who doesn’t have cfids, lyme, and mcs. and trusting u to know that i love ur comments, but it’s an effort to reply to them, bec that takes work so if i’m slow or don’t reply, that is why. because i have cfids and lyme and mcs. i treasure them. i smile with almost every one.  my heart is full, thanks to ur support and sue eh’s support and barnum and others.

the migraine is setting in now; my body is pissed that i’m not heeding its call. do me a favor, will u? pls post and fwd this link to everyone you think could stand to know about lyme, cfids, and/or mcs. because i’m not up to it, and i know you get it now, because you’ve  seen me at both ends of my spectrum. thank you.

this is me. radio silence.

love,

sharon, the muse of gadget, and barnum, quietly concerned sdit

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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