Posts Tagged 'ASL'

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.

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

Hospital Access FAIL

This is not what I want to be writing about. I want to be activisting about the horrifyingly biased, unresearched, and clearly bought article the Chicago Tribune published recently saying that chronic Lyme disease doesn’t exist. (I am not linking to it because it does not deserve any more attention than it has already gotten. The wankers.)

As you can tell, this has me pissed off, because this nonexistent illness has been fucking with my life a lot this week (as well as for the last few years). But for right now, let’s focus on this week. Let’s just focus on the last couple of days.

There has been vomiting. There has been severe pain and immobility. There has been vocal-cord apraxia — the inability to produce speech — which is a prominent player in my story. There have been many nights where I barely slept at all, such as last night, when — after I recovered from violent puking — I slept from 3:45 AM to 5:00 AM, and then later from 1:00 PM to 2:30 PM.

This second round of sleep — if you can call it that — was filled with nightmares of me trying to reach my doctor or communicate with my visiting nurse, and it all going wrong. I repeatedly woke with a gasp and my heart pounding. Which was all true to life.

So, what, you may wonder, is this all about?

First part of background: I have a PICC line. I am very grateful for my PICC line because it is part of what saved my life when I was being eaten from the inside by bacteria, parasites, and other microbes, otherwise known as Lyme disease, babesiosis, and bartonellosis. It has been part of the treatment that has vastly improved my quality of life and my hope for a healthier future.

It’s also a pain in the ass that I’ve lived with since August 2009. However, when I had to stop treatment for a month, I backslid in a serious way, and I feel like if I could safely stay on my antibiotics for the rest of my life, and they would continue to reduce my symptoms, it would be worth it, by a long shot.

The second piece of background: The medication that I infuse through my PICC is called Rocephin, which is an antibiotic. The good part about it is that I have tolerated it (which is often not the case with medications), and that is hasn’t messed up my liver (another frequent medication problem), and that it has worked — in other words, it has helped me get better.

Yay! The only major concern I had is that long-term use of Rocephin can cause gallbladder sludging or gall stones. To try to prevent this, my doctor has me on a schedule of infusing four days in a row and taking three days off, each week. The time off is to give my gallbladder a chance to rest. So far, I hadn’t seemed to have had any gallbladder issues, which was good, as any time in a hospital is really deleterious to my health. When I had to get a liver sonogram a couple of years ago, it set me back several months of functioning.

I’m not going to sugar-coat it: PICCs require a lot of upkeep. Small things can go wrong, and big, life-threatening things can go wrong, and a lot of stuff in between.

This is actually my second PICC. The first time I got one inserted, it was planned far in advance. Because it was planned in advance, I could set up the accommodations to my disabilities I needed. Since my voice often doesn’t work, especially in situations where I am having increased bodily trauma, such as the chemical exposures and exertions attendant with a hospital visit, I usually request an American Sign Language interpreter (ASL terp) for medical appointments. This allows me to communicate much more safely, fully, and effectively, especially because I wear a mask that covers my mouth and prevents others from lip-reading me.

It turned out to be very important to have that terp there that day because I was immobile and covered from head to foot except a tiny portion of my face and my left (non-dominant) hand, so communicating would have been a challenge in the best of circumstances. The interpreter was outstanding. She was working without syntax or grammar — which are read on the face — and with only my non-dominant hand signing.

Six months later I needed to have my PICC replaced because it was blocked. There was no interpreter available, but Betsy usually understands me very well, and her presence alone would be a comfort, so she got dressed in scrubs and came into the operating area with me. The first PICC insertion had taken half an hour. We expected this one to go as well. Instead it went TWO AND A HALF HOURS because my veins went into spasm, and they had to keep trying new veins, after prodding a spasming vein for an hour to see if that would help it relax. (It didn’t.)

And, Betsy only understood about one-eighth of what I said, because she is used to lip-reading me, which she couldn’t do with my face covered. It was pretty traumatic for both of us.

Yesterday, I was doing my infusion, as usual, when I noticed that it was hurting very mildly. I am in such severe pain everywhere on such a chronic basis, I didn’t even pay attention. After infusing, I always need to flush the line with saline and then heparin (a blood thinner that keeps the line clear). Each time I flushed, it hurt very noticeably. This is not normal. It’s never happened to me before.

I called the visiting nurse association (VNA) that is in charge of maintenance of my PICC and described the problem. I expected the nurse supervisor to ask me a bunch of questions to try to determine what might be going on. Instead she said she would have my nurse (who comes every week to change my dressing), call me.

Nurse called. She asked one question, and didn’t ask all the others I thought she would (to assess, oh say, if I was going into septic shock or had a deep-vein thrombosis) and then she said she’d come take a look tomorrow. She said not to flush the line or infuse until then. She also said she’d talk to my doctor the next day.

I wasn’t happy about this because (1) that meant waiting possibly 24 hours for any idea as to what was going on, and (2) my doctor doesn’t work on Fridays. I told Nurse this. She ignored me. I know from experience it can be difficult to reach my doctor when she’s not in the office. And she has no other backup; she is the sole doctor in her practice. If you need to speak to her off-hours, you have to call her personal cell phone, which sometimes she answers and sometimes she doesn’t.

“We’ll reach her through the on-call service,” Nurse said. I gritted my teeth. This was not the first time we’d gone through this situation, but she clearly wanted to be done for the day, and I didn’t have much choice in the matter.

Today, when Nurse did not call to tell me when she was coming (as she always does and had said she would), I called her. She sounded annoyed. She told my PCA (because I couldn’t speak), that I should try a saline flush and see if that hurt. If it did, I’d need to get the line pulled. If not, she’d come over later. She said she’d call in a few minutes to see how the flush went. I flushed, and it didn’t hurt like last night at all, but afterward, it did sting a bit, which is, again, unusual. Then we waited for her to call back, which she didn’t.

So, we called her. We had a pointless conversation, interpreted by my PCA because I couldn’t voice. She said she’d call Doctor and call back. I wanted to tell her Doctor doesn’t have office hours on Fridays, but I had to type whatever I wanted to say so my PCA could read and relay it from the computer screen, and it seemed like too much trouble.

An hour passed, we called her again. Nurse hadn’t heard back from Doctor. Big surprise. I told her again that Doctor is hard to reach on Fridays, and Nurse said that was okay, she’d reach her through the answering service or speak to the on-call doctor. I tried to get across that Doctor is the on-call doctor. The only doctor in her office.

While all of this is going on, Betsy and I are trying to figure out: Does she need to leave work? Does she need to cancel her plans for the evening (that are very important to her) to take me to the ER? We were left hanging, and Betsy was not happy about it, because so many other people would be affected if she had to rush home.

Another issue came up. I started to ponder why I had been doing all this vomiting lately, which is not normal for me. Why all the nausea, the bloating and gas? Was it more than my usual food allergy issues? Could these be gallbladder symptoms?

You already know the answer. I looked up gallbladder symptoms, and I have all the risk factors (really), and most of the symptoms. Now I needed to get a gallbladder sonogram, too. And I needed to communicate this to my doctor right away!

Eventually, at the end of the day, Nurse told me she hadn’t reached Doctor, so she couldn’t officially tell me what to do, but she’d discussed it with the nurse supervisor, and they felt I should go to the emergency room and have the line pulled. I have many reasons — particularly my MCS — for not wanting to go to the ER unless I’m really dying, to take that decision lightly.

I tried to reach Doctor myself, a few times — by email, by message on her office phone, by calling her on her cell, which is the number that the office voicemail gives out for medical emergencies but which she sometimes doesn’t answer. Finally, after my final conversation with Nurse, I called Doctor and she answered. I gave my full name and asked her if she’d heard the messages from Nurse and me.

“Sharon who?” she said. Not the kind of reception I was hoping for. I told her what was going on and that we’d been trying to reach her all day.

“You know Friday is my day off,” she said.

I said yes, I did know, and I’d tried to explain that to Nurse, but she didn’t seem to understand. Then she finally swung into Doctor Mode and asked me relevant questions: Was my arm red? Swollen? Hot? Was the insertion site painful to the touch? Did I have a fever?

When I said no to all of these, she said I didn’t have to go to the ER, I could just get my line replaced. I said I wanted to do it as soon as possible — ideally Monday — at the same time as I got the gallbladder ultrasound. She said she didn’t know if either were possible, but she would call the hospital on Monday morning. I had hoped she would call them right away, but I gave up.

I continued to read about how to heal your gallbladder at home, without having to undergo surgery for removing it, which would be disastrous for my health — both the surgery itself as well as being without an organ that helps detoxify my body. We MCS folks need all the filters our bodies can provide.

It was extremely depressing because pretty much all my other disabilities and health conditions — including dozens of food allergies and sensitivities, my PCA schedule (because they cook for me), and the way I eat to control my cholesterol — demand I follow almost the exact opposite way of eating. I really don’t know how I’ll make it work, but I’m trying anyway. Nobody’s taking my internal organs without a fight, dammit.

Then Doctor called again to tell me I had a 9:00 AM appointment on Monday for the ultrasound, followed by an appointment for PICC line removal and replacement. I’d have to check in at 8:45, and I’d have to fast the night before. Well, that was fine. I was so relieved.

I cried about how exhausted and scared I was to some friends, and then I realized I should try to book an ASL terp, even though it was almost certainly too short notice for them to have one available. I also thought I should mention the MCS and request fragrance-free practitioners, though, again, I knew that was unlikely.

I called the hospital and asked for a terp. Of course, when I was making this call, my voice was working, so I’m sure the switchboard operator was confused, but I didn’t feel like explaining. She looked up my appointments and said, “Oh, those were canceled.”

“What?!” I said. “Who canceled them? Why were they canceled?”

The operator told me that my file shows I need an interpreter, and they had called their one ASL terp to see if she could do the job, but she already had a job at that time, so they canceled the appointments. Without asking me if I wanted them canceled. Without even telling me they were canceled!

If I hadn’t called in, Betsy and I would have shown up at the time we had been told to show up for our scheduled appointments and — silly us! — expected that I still had those appointments. AUGH!

I told her that, yes, a terp was helpful, but it was more important that I have the procedures. “I need to go to those appointments!” I said. “Can’t you un-cancel them?”

She said no, she wasn’t in radiology, she didn’t know their schedule or which appointments they had or didn’t have.

“But you knew about my appointment being canceled and about the interpreter thing,” I said.

“That’s because we book the interpreters,” she explained. “But we can’t make appointments. Your doctor can call in Monday to make the appointments.”

“But then it will be too late!” I said.

She asked me the name of Doctor (my specialist), whom she didn’t know. Then I told her the name of my primary care physician, who is well-known at this hospital. She made an agreeable sound.

“What if I have someone from that practice — whoever is on call tonight — call in and make the appointments?”

“It’s after business hours,” she repeated. “You have to wait till Monday to make appointments.”

She added that the state agency that’s responsible for providing interpreters would provide a terp if I was coming in over the weekend, for an emergency. But since I was trying to come in for an appointment on a week day, they wouldn’t provide an interpreter.

There it is: Because the hospital couldn’t meet all of my access needs, it responded by denying me the medical care I need, without consulting me about my wishes or needs, and without even telling me that they’d taken this pre-emptive step.

If I were Deaf, the option of making do without a terp would likely be even more of a hardship (since I can hear/understand what’s being said to me in spoken English; I just can’t respond). I also didn’t need a relay or interpreting service to make the call, which I know from experience makes everything much, much harder and longer and more complicated.

Be-that-as-it-shouldn’t-be, I had to call Doctor again and apologize for bothering her in the evening on her day off again, but that the hospital had canceled both my appointments, and could she please call the hospital and make the appointments again. I also asked her to stress to the hospital that while I prefer to have an interpreter available, they should not cancel my appointments if they can’t provide one! Fortunately, Doctor was very nice about it.

So, assuming my symptoms don’t continue to mount and I end up in the ER anyway, very, very early Monday morning, Betsy and I will be packed and ready to go, waiting for a call from Doctor to let us know if she was able to book those same slots, in which case we’d need to haul ass up to the hospital. Or if we were going some other time.

I could just vomit. But I hope I don’t,  because I’m getting tired of that.

stuck day

today is a stuck day. i haven’t had one in a long time. i thought i was done with them. that’s lyme for you. once you think you’re doing better, it returns and kicks your ass.

you probably can’t tell today is different from my writing, except that i’m not using caps. if i tried to use caps, i wouldn’t be able to write/post. that’s because all i can move right now are my hands, my facial muscles, some minor head/neck movement like small nods, and the lower part of my right arm. with great exertion and pain, actually, i can move more of both arms, but that’s only for necessities, like signing, typing, positioning. i’ve also reread this later when i was more functional and corrected the huge number of phrases that made no sense.

here’s what a stuck day is like: i wake up and think, “oh, i have to pee.” i realize that i’m in a lot of pain and feel weak, and the idea fleetingly crosses my mind that i might need help to get out from under the covers. “nah,” i tell myself. “don’t be such a drama queen. once you get going you’ll be fine.”

So (oh look, i did a caps! the drugs are kicking in!), I roll onto my side, and i get stuck. i can’t get the blankets off me. i can’t even move my arms or my legs, i realize. i can’t talk. ohshitohshitohshit.

then, i have to find my call button. this is the doorbell i wrote about in a previous post. no, i’m sorry, i can’t put the link in right now. maybe later, when i can move. [note: i’m doing a bit better now, so i’ve put in said links.]

anyway, i need to hit the button which is now loose on top of my overbed table. with great effort i get my left hand up onto the table, and it crawls around like a crab, searching. i hit my “clik-r” clicker button, and i hear barnum pop up. sorry buddy. bad trainer. no cookie. eventually i find and press the doorbell button. thank god!

here’s the problem: i’m lying on my side with my back to the door. i can’t talk or really make any sound. i can’t move at all except my left hand. so when i hear carol, my pca, open my door, i know she is waiting for me to say something or indicate something. and i appear to be all snuggled up, asleep. i try to sort of flap my left hand, opening and closing it, hoping she can see it from where she’s standing, but apparently she can’t, because I hear the door shut. DAMMIT!

“well,” i think, “i’ll just have to ring again. eventually she’ll realize i wasn’t ringing by accident in my sleep.”

yeah, right. cuz i can’t find the fucking doorbell button this time. i press the clicker again another couple of times — barnum’s really curious as to what’s happening now — and i can’t find the button. through tremendous effort i pull myself up a few inches to better search the table and find the button. i grab it — not letting it go anymore today — and ring it repeatedly.

i try to roll onto my back so i can communicate better, but can’t. fortunately, betsy comes to the door. yay! I had assumed she was asleep. she asks if i rang. i sign “yes.”

she asks what’s going on. i sign, “stuck,” which is a v-hand shape, finger tips on either side of adams apple.

her sign is rusty. she can’t remember that word.

“is it your heart?” she asks.

I shake no, then fingerspell S-T-U….

“You’re stuck!” she announces.

Relief. Nod.

“Do you need to go to the bathroom?”

Affirmative.

Thank god, betsy knows the drill. carol does, too, but she has back issues and is getting over the flu, and betsy understands me when i’m nonverbal better than anyone else does. also she’s strong as a power-lifter. she pulls the heavy blankets off me. she pulls my legs toward the side of the bed. she moves my pchair into position. she grabs my hands and pulls me into a sitting/slumped position. I take a moment to rest, then she lifts me onto the chair. i’m no lightweight. i’m always surprised how strong she is.

barnum is overjoyed to see betsy — and me out of bed — and he throws himself between us, wriggling, wagging, kissing, pressing against us. he is soaking up betsy’s attention primarily, because she’s more capable of good butt-scratching than I am. i ask her to stop so i can give barnum some attention, have him just focus on me for a bit.

refreshed by puppy love, we get back to business. i take the call button with me to the bathroom. once there, betsy picks me up off the chair while i pull down my pants (fortunately the muscle lock has eased enough now that I can do this), and i pee . . . for a long time! (you know the scene in A League of Their Own when Tom Hanks pees endlessly and Mae/Madonna takes out a stopwatch to time it? it was like that, except i wasn’t all hungover and gross.) we chat a little, mostly consisting of me mouthing/signing, “this sucks. why is this happening?” and exchange more dog love. Betsy helps me back onto the chair and then settles me in bed (without the quilts, which are too heavy, and even when i’m doing better, could immobilize me just by their weight alone). i just keep my light organic cotton sheet and blanket.

then she leaves me to go do other things and carol steps back in. my first priority is getting pain and muscle relaxant meds in me, so I can function better. i do a lot of mouthing and miming to get across what i need. carol and i get my laptop computer open and readjust my position, overbed table, and screen so i can communicate with her by typing.

one of the worst parts about stuck days is when they are apparently caused for no reason. i have no idea why today i’m doing so much worse than yesterday. i don’t know if this is my fall crash, and now i will be wrecked for weeks or months to come, or if this is just a blip. i don’t know if this is a result of the new Lyme treatment drug i started Thursday. fortunately, i am too exhausted, painful, and crappy feeling to care much about what it all means. i’m just focused on getting through, minute by minute — or actually, task by task. i feel relief that i have carol and betsy here to help me. it feels so much better to have peed and have the right bolsters supporting me in bed. writing this blog gives me something to occupy my brain, other than worrying what the cause of Mystery Stuck Day is and whether it will stretch out into weeks or more from here.

(the meds are really kicking in now, which is good because i can move better and feel less crappy. but it’s bad because i took them on an empty stomach, so i’m getting sleepy and dopey, and i want to finish this blog before i go back to sleep.)

several times since waking up, i have missed Gadget so bad it was a physical ache. if i’d had the energy to spare, i would have cried. but that would have wrecked the small physical gains i’d made, and i don’t even think i have the lung capacity for deep breaths, so i just locked those feelings in. in my heart, i was crying. it’s 20 days till the anniversary of his death, and i feel so heavily the weight of his absence today. he could have helped me transfer — to and from the bed, chair, and toilet. he could have gone for carol or betsy so i wouldn’t have had the stress of not being able to indicate i needed their help. he could have carried messages to them telling them exactly WHAT i needed. he could have opened my door again and again so that i wouldn’t have had to endure what i did to find the call button the second time.

the only “help” barnum provided was licking my face a LOT. i certainly appreciated that, even more than usual, but a little emotional boost and distraction only gets you so far on a day like this.

there’s also the hindering Gadget would NOT have done. (For the record, Jersey wouldn’t have helped me much on a day like this, because she was trained and worked when I was much more functional, but she also would have been very easy — no demands.) gadget wouldn’t have jumped up with his forelegs landing on my legs after i was back in bed, causing severe pain. he could have let himself out to pee and then come straight back in. he wouldn’t have stepped on my burning feet when i was sitting on the toilet. and then. . . .

when carol left me after i was resettled and typing this post, barnum started The Barking. Lately, once a pca (especially carol, his favorite) leaves, he tries to demand their return. after all, i am Boring Lady, stuck in bed, not playing or giving love or attention, while he could be following carol around the kitchen, watching her prep my meals. hearing lovey-dovey talk. getting rubbed behind the ears. etcetera. so, the second they leave my bedroom, he sits at my door and barks.

which is why the pcas all have to ignore barnum until i get up for the day. but i am still dealing with the extinction barking while barnum tries his damnedest to change my tyrannical rule.

lately, i’ve been dealing with this by working on “bark” and “quiet” with him, but being nonverbal, i couldn’t say quiet. HOWEVER, having learned from the past, he knows 3 cues for quiet: ASL for quiet, the word “quiet,” and the sound, “shhhh.” I taught, “Shhh,” because it’s a sound i can make even when i can’t speak. the ASL for quiet requires lifting hands to mouth height, which I can’t do right now.

so, after he has started the very loud, very sharp barking, it occurs to me that i can actually do something about this. i try to call him over to put his front end on the bed near my upper body, but he really only knows all the many ways i have of telling him “off,” for all the times he tries to get on the bed, because normally he wants on and I want off. of course, today i am patting the bed and making kissy noises and he just stands there, waiting for me to make my meaning clear. I can’t communicate “up” nonverbally. something to remember for later: need to teach signed cue for “paws up!” but i have my clik-r, which, despite its other faults (not my preferred clicker), is good for a day like today for two reasons:

  1. it takes very little pressure to depress the button, so even on a weak day, i can usually manage it
  2. it’s very, very quiet. barnum has excellent hearing, so he can hear it even if i click during one of his ear-splitting barks.

fortunately, i always have treats close to hand, so i click and treat for a silent moment. then we start practicing “shhh,” which goes well. he’s bored, and now i’ve given him something to focus on. occasionally i throw in the cue for “bark,” just to keep things interesting.

i am having trouble pitching the treats onto the floor, so i hold my open hand, palm up, on the bed, a treat on it, and barnum takes it that way. much easier. also, interesting note: he was ignoring most of the treats i threw on the floor, because they weren’t “good enough.” But when i offered them in my palm, he took them. could it be the energy expended was not equivalent to the value of the treat if he had to chase it? Or that, love-bug that he is, the contact involved in taking from my open hand added value? or that he liked the chance to “eat off the bed” which he normally isn’t allowed? the novelty?

at any rate, this gave me an idea. i do want him to learn to have paws/front up on the bed when i need his help, when invited, but not to have any part of his body ON my legs or feet — or other body parts — as that’s too painful. so i moved my hands back, closer to my body, for treating, and he jumped up and settled his torso parallel with my legs. actually warmly just barely touching them. felt good, physically and emotionally. perfect.

then i c/t him for making eye contact, for being quiet and still, and started shaping him to rest his chin in my palm. i mostly used luring. usually i try to use targeting or shaping more than luring, but if there’s anything a stuck day teaches, it’s that you use what you can. when i offered the treat in my palm, i’d click when he put his chin in my palm to eat the treat. i did this many, many times. eventually, i pretended to put a treat in my palm, and when he went to get the nonexistent treat, i clicked for contact and treated in my palm. c/t for that, continued. sometimes actual treat in palm, sometimes luring with motion that suggested treat. after a while i shaped the beginnings of a chin target in palm.

as his eye contact got more frequent, i started introducing my hand signal for eye contact, which is ASL for “look into my eyes.”

it felt really good to be accomplishing something when i was able to do so little. i had gone to sleep with all sorts of schemes and plans to work on recall remediation, using the great outdoors and Premack principle stuff i’ve been learning on the training levels list, because barnum’s recall (meaning, coming when called) ranges from great to eh to abysmal/nonexistent. but today’s physical and communication issues put the kibosh on that.

sometimes, actually, it seems like the best training occurs without plans, without grand expectations, but just by using my instinct, my thumb on the raised clicker button, and whatever the dog’s willing to offer. life with disabling chronic illness is unpredictable, and as wheelie catholic put it in a blog recently, that’s the thing about access — it isn’t a problem until it is. much the same as with everything with a severely fluctuating disability — it isn’t an issue until it is.

suddenly, nothing could be taken for granted, and it forced me to get back to the fundamentals of clicker training: see what the dog is offering, and shape it using just a click and some food. no target sticks. no body movement. no voice. it granted me a great feeling of power and control, of communication and making things happen, on a day when i otherwise was pretty well powerless and struggled to make myself understood by the people around me.

i still missed gadget terribly, because we already had a working language, and because he could have actually helped instead of just offering a challenge to overcome. On the other hand, i did tell barnum’s breeder i like a challenge. be careful what you ask for.

Please comment, if you feel inclined.

-Sharon, Barnum, and the muse of Gadget (and Jersey)

Level 2 Tests, Part 2

Here are more Training Levels tests videos! By now it’s been three weeks since we made these, and we are still practicing and refining the skills at these levels, as well as building the other skills not-yet-tested for Level Two.

A note on accessibility: The YouTube captioning program is, um, extremely limited, to put it nicely. Their software uses an algorithm to match captions to spoken English in the video. This does not work if, oh, say, you usually have a lot of background noise (such as wind or powerchair motor noises); or important noises that are not language (such as the sound of the clicker); and/or you’re not speaking clear English (which is true when my voice isn’t working well or at all, in which case I might also sign). Thus, it took hours of painstaking work to make some badly captioned videos, while other videos were totally impossible to caption at all.

However, the lovely and delightful Anna of Forward/FWD and Trouble Is Everywhere, pointed me toward dotSUB: Any Video, Any Language, which has software that is so much better. You can caption any ol’ damn video you like, regardless of language. Unfortunately, WordPress won’t let me embed the dotSUB video directly, like I can with YouTube.

Sooo, from now on I’m going to embed the non-captioned YouTube videos, and provide links to the captioned version and to the video description/transcript. I wish it weren’t so clunky, but there it is — if we make the internet accessible, then anyone can use it.

Also, here is the captioned version of the video from my previous post that I was not able to caption via YouTube:

On to the fun stuff!

We are still working on Level Two (L2), but I’ve moved us ahead on Zen (“Leave It”) to Level Three (L3), because, in general, we rock the Zen. (If you decide to watch only one of these videos, watch the L3 Zen test, to see Barnum clowning it up about thirty seconds in.)

Please note: Normally when we train, I make sure there are no distractions (unless they’re planned), and Barnum is really excited to train. We are both focused. This is probably the most important factor I’ve learned from Sue Ailsby’s method [scroll down to the bottom at this link] — Is the dog In The Game?

However, when we test, there’s someone else there filming — sometimes more than one person — and I have to try to remember what the criteria are for each test. I get nervous about the camera, too. Thus, I have a hard time focusing on the training/Barnum. All of these things affect Barnum’s focus, too. So, please don’t think we are normally this flaky and distracted when training! (My timing with the clicker is particularly abysmal.) Barnum has an excuse — he’s only seven month’s old — but cognitive issues or not, there is never an excuse for the trainer! Ah well.

This is the first part of our L2 Crate test — the crate in my bedroom. The criterion for Level Two crate is that the dog enters the crate with no more than two cues, allows the door to be opened and shut, with no pawing or vocalizing.  This is the crate we use the most. We had a false start, but I decided to consider it a fluke, because we use this behavior all the time. The non-captioned version is below. See the captioned version here. Read the description and transcript here.

This is part 2 — the crate in the living room. Ironically, though we use this crate a lot less, Barnum does better in this part of the test, pretty much because we had the two previous sessions in the bedroom (practice!). See the captioned version here. Read the description and transcript here.


This is our L2 Distance Test. I never taught this as a distinct skill before, but I’m loving it. I already use it sometimes when I’m sitting in bed and I want Barnum to come around my wheelchair from one side or the other. I can tell we can use this one a lot in the future. The criteria are that the dog must go around a pole or other object two feet away from the handler, with no more than two cues. See the captioned version here. Read the description and transcript here.
Finally, our L3 “Zen” Test. The dog must leave alone food in a stranger’s hand for 20 seconds, one cue only. (I wrote “40 seconds” in the description that accompanies the video, but that’s wrong.) He met my neighbor once before, but he was focused on her dog that day, so he doesn’t really know her. (Though we do still have some work to do with manners, as you’ll see when he starts to snorffle her pockets!) See the captioned version here. Read the description and transcript here.

Comments are always more than welcome!
-Sharon, Barnum, and the Muse of Gadget

Level 2 Test Videos (Part 1)

I have figured out how to use Betsy’s camera to make very short videos! On July 31, when my parents visited, I had them test me on six of the sixteen behaviors of Level Two in Sue Ailsby’s training levels (which I introduced when I tested myself on L1, delved into further in “Click, treat, repeat,” then provided another update on our progress, and just a couple of days ago, provided the brain-twisting theory behind it all).

Now, as promised, the first batch of L2 test videos!

I wasn’t sure how strictly to judge myself, so I retested them the next day, August 1. I’ll give a synopsis of the criteria we are testing ourselves against, but if you want the details, read them here at Training Level Two.

The first day of testing (which has not been recorded for posterity here), Barnum was very peppy. Probably a combination of cooler weather and the presence of visitors (Oh boy, oh boy!). The following day, in the videos below, he is very mellow. Well, that’s the two sides to the Bouvier des Flandres — bouncing around and athletic, or floor spud, and not much in between!

Here’s our handling test. Test requires handling all paws, ears, and tail, without the dog fussing. On day one, I did it with him standing (because he was hyper), but that’s not typically how I do handling. I feel like he did pass it — he let my dad pick him up (twice!) so he could hold him to weigh him. I thought that was pretty good for someone he’s only met about three or four times. (For the record, Barnum weighed 64 pounds.)

But I wanted to redo it the way we normally do.  Here’s the video-taped test, showing our usual style. Even though you can’t see it, I did do both hind feet (one I pulled a burr out between the toes) and his tail (what little of it there is got wagged, gently pulled, lifted, etc.). I didn’t caption it because my voice wasn’t working, so there’s no essentially no audio. I look like I’m speaking, but really I’m mostly mouthing and squeaking. Read the transcript/video description here.

Next is our “trick.” You can teach any trick you want. I chose ringing a bell to indicate he wants to go out. Barnum also knows various verbal and signed cues for ringing the bell. He did it better the previous day, but I felt that today’s was a pass, too. It’s closed-captioned. Read the transcript here.

This just in! August 10, 2010 —

Three times today, Barnum went to the bell, while I was in bed, and rang it to indicate he wanted to go out. Even better, each time I took him out, on lead, he PEED or POOPED immediately, and on cue! Woohoo! The “trick” is no longer just a trick — the connection has been made!

Now, back to the testing videos of 10 days ago. . . .

This is our Come Game test (captioned).

The dog has to come eagerly, straight to you from forty feet away.

When he did it yesterday, he ran faster/harder, but I still felt this was a pass. Read the transcript here.

This is our Zen (“Leave It”) test. Dog must stay off a treat in your hand for 10 seconds and off a treat on a couch or low table for five seconds. One cue only.

Barnum always does great with Zen. I wanted to make it clear I was not “guarding” the treat by being near it, which is why I moved it and moved far away from it and looked in another direction. That is raw beef heart he’s ignoring; even though he looks like he doesn’t care, it’s one of his favorite treats. I’m calling this a pass.

(It’s captioned, but not well. I did try my darndest; apologies.) Read the transcript here.

This is our targeting test — target sticks.

Dog must touch the end of a target stick.

I used the stick from the Alley-Oop (yellow tip), then the Manner’s Minder (love that one! — red tip), then the old-fashioned Karen Pryor stick (just metal, and mine is missing its tip).

I didn’t know I was holding some of them out of the range of the camera, but he actually did the very tip on the KPCT stick both times, which I was happy about, because it doesn’t even have its tip anymore, so it’s not as obvious as the other two. 

Note: I’m doing something wrong in this video, see if you catch it!

Apologies — I could not get the captions to work with this video. They ended up being so ill-timed I thought they’d be more distracting than useful. Read the transcript here.

After seeing the video above I realized I often move the stick away as he’s going to touch it! Need to work on that! Also, since it’s in my left hand, I asked for many more touches on the left. Need to work on that, too. I still consider it a pass. We will continue to work with the sticks, and I’ll be more careful with those two issues.

Finally, after retesting “Go to Mat,” I decided it’s a fail!

Both days, he did not run to the mat, like I’m looking for, even though it’s not technically in the criteria (which is the dog goes to a mat from five feet away, with two cues or less, all four paws on the mat). I want a more enthusiastic response to the cue.

Here’s the closed-captioned video, anyway, of where we are in our process.  See the transcript here.

Update: Some on the training levels list say he did pass this behavior, so I decided it’s technically a pass, but I’m going to keep working at it at this level anyway.

Thanks for watching! (And more videos on the way, as we have tested and passed three more behaviors, so far.) As ever, we welcome your comments!

-Sharon, Barnum, and the spirit of Gadget, who would’ve rocked the Levels, if he had but been given the chance!

Back Back Back: A Year Ago Today

Back, back, back
In the back of your mind …

When you sit right down in the middle of yourself
You’re gonna wanna have a comfortable chair

-Ani DiFranco

Backdrop

I’ve been feeling depressed lately. I thought it was mostly health stuff. Ten days ago, my doctor told me that my complete blood counts (CBCs) were showing abnormalities, and that I had to stop all treatment for Lyme disease and coinfections — eight medications in all, including intravenous and intramuscular antibiotics — because medication toxicity was the likely culprit. If my blood work was normal for a month, we could discuss how and which treatments to resume. If it didn’t, I’d need to see a hematologist. She added that if my medications were not the problem, the cause might relate to “bone marrow,” such as “leukemia.” Terrific.

I had the leukemia flag waved at me a few years ago by a doctor trying to convince me to go to the ER, which I’d been refusing to do. His scare tactic worked. I went, and it turned out to be a lab error, as I’d expected. In this case, we have several weeks of abnormal tests to prove it’s not lab error, and I really like my current doctor, but I think casual cancer references should be illegal.

Background

A few days ago I received copies of the blood work my doctor’s concerned about. Some of the things that were wrong, such as abnormal lymphocyte counts, reminded me of reading Gadget’s CBCs. In fact, the reason I can decipher a CBC is that after Gadget started chemo, I studied his every week. I researched what each abbreviation stood for and what it could mean for his health. I bought veterinary manuals. I learned all I could about canine lymphoma and its treatments. He ate a homemade cancer diet and received Western and Chinese herbs, supplements, acupuncture, and chiropractic. The average life expectancy of a dog on Gadget’s chemotherapy protocol (Madison Wisconsin or CHOPP) is a little over a year. Gadget lived half that.

When Gadget was diagnosed, I also had a feeling of foreboding — about myself. Even as I was sure I could beat the odds for him, I had a bad feeling about what it would mean one day for me. Gadget and I were as close as I thought it was possible to be (until we got even closer, during the months he was sick), and we shared many of the same health problems: food sensitivities, bad reactions to drugs and chemicals, neurological issues, thyroid problems. I had raised him as healthfully as I thought possible. Like me, he was exposed to no pesticides, no cleaning chemicals, no preservatives or additives in his food. We lived in the country, and he drank clean water and breathed clean air. With his lifelong health problems, I’d always known that the longevity deck was stacked against him, due either to genetics or his early life. I suspect he came from a puppy mill. Still, I had never thought it would be cancer that would take him from me. My friends and family were similarly shocked: “Cancer? No, it can’t be cancer. Not Gadget. Not with the way you care for him….”

When I accepted that it was cancer, I thought, “I’m next.” A lot of people with MCS get cancer. I don’t know how often it’s directly related. In some cases, it’s clear that the chemical injury that caused the MCS also led to cancer. In others, it isn’t. Cancer is so common in the general population, it might just be coincidence for most. Regardless, with all my own illnesses and my history of chemical injury, and the fact that I got sicker instead of better despite all my efforts, when Gadget’s diagnosis was confirmed, it was hard for me to shake the feeling that it meant something for my health too. After all, we were two parts of the same body/soul, with so many of the same obstacles thrown in our paths. Some part of me settled into a silent conviction that it was my job to care for him until it happened to me, too.

Then, all the work of battling cancer distracted me from myself. Focusing all my energy on Gadget’s physical health and his happiness kept me too busy for the next six months to allow those thoughts again. When he died, they resurfaced, but I pushed them away. Until now.

Backslide

As I wait out this month for my test results, my symptoms charging back as treatment is withheld, I’ve become depressed. At first, I wasn’t sure why. There are a lot of potential reasons: Feeling sick feels bad, in itself. Not knowing why I’m doing worse — is it the tick-borne diseases letting loose, or is it something else? — is scary. If it is Lyme & co., will I be able to return to treatment, or will I spiral back down to where I was two years ago, back to a life of severe loss of function and intractable pain that felt marginally bearable largely because of Gadget? Could it be that mood/behavior changes, which can include feelings of hopelessness, had returned along with my other neurological symptoms? In this case, how could I know which of my feelings were “real” and which were the bugs eating my brain?

Backtalk

You might think that Barnum would cheer me up, but I’ve actually found raising him in the shadow of my grief to be confusing. Sometimes, I feel joyful, triumphant, and proud that despite my inexperience with puppies, his challenging mixture of personality traits (to be enumerated in future posts), and my significant — and currently, extraordinarily unpredictable — limitations, we are managing to make a go of it. Other times, I am so angry with myself and wracked with guilt by mistakes I’ve made or frustrated by his puppyhood — the concepts he doesn’t understand, the final steps of housebreaking, the exuberance that just isn’t fun when it involves bodily harm or the barking zoomies at 3:00 A.M. — that I question whether getting a puppy was the right decision. I argue with myself:

Me 1: “Gadget wasn’t like this.”

Me 2: “But Gadget wasn’t a puppy when you got him.”

Me 1: “But I never questioned that Gadget would be a great service dog. We struggled with a lot of things, but I had total faith that we’d be a team.”

Me 2: “But that was partly ignorance! You didn’t know all the things that could go wrong. Now you know so much more about the many reasons a dog can wash out, and how a dog has to want to work. Back then, you just took for granted that a dog that had more gusto than Jersey would love to work. Plus, you have more disabilities now, which makes it harder to raise and train Barnum and ups the ante of the number of tasks you’ll want him to learn.”

Me 1: “Ugh.”

Backcountry

I’ve just finished listening to a book called Merle’s Door: Lessons from a Freethinking Dog, which is a deeply moving book about an intensely close relationship between a rescued stray and the author, Ted Kerasote. Although Merle was not an assistance dog, he and Kerasote had a working partnership, as well as a deep and intimate love. Kerasote is a subsistence hunter in rural Wyoming, and Merle helped him locate elk and other game. All of Kerasote’s meat was what he procured from the wild, so they weren’t just sharing a game; they lived off this teamwork. The subject matter, alone, was bound to make me continuously reflect on my relationship with my dogs, especially Barnum and Gadget. Kerasote — who gave Merle freedoms impossible for most dog owners — challenges a lot of traditional, as well as current, thinking on dog care and training. Combined with my struggles and deep feelings of inadequacy as a puppy raiser, this focus kept me comparing myself and my canine relationships with that of Merle’s idyllic life with Kerasote.

Finally, of course, any book about the life of a dog must end with the death of that dog. Merle died of cancer, and the journey of illness and death that Kerasote traveled with Merle was very similar to what Gadget and I experienced. I finished the book yesterday. For the past two days, leading up to Merle’s death, I cried over and over. When I otherwise had no energy to move, I’d lay still except for the sobs jerking my body. I frequently envied Kerasote’s abilities and resources, physical and social, to care for Merle and provide a death and funeral for him that I was not able to provide for Gadget.

Backtrack

I thought these were all the reasons I’ve been thinking about Gadget more than usual while simultaneously feeling his presence in my memory murky and hard to grasp — as if Barnum and Merle somehow were obscuring who Gadget really was, what our relationship was, why I felt this pain under my breastbone that I could not name. Until today, I hadn’t known what to do with it but obsess darkly, eat chocolate, and cry.

Then, Carol, my PCA said, “Today is May 8, isn’t it?”

I rarely know the date; even the month can be a stretch. I checked my calendar and nodded, yes, the eighth.

Carol said, “It was exactly a year ago that I took Gadget to the hospital, wasn’t it? May eighth? ”

That stopped my heart. It was.

Back, Back, Back

I was very sick that day, like today, like yesterday. I couldn’t speak or get out of bed, and I was in a lot of pain. Gadget’s eye had looked pink the night before, and I had flip-flopped over monitoring it at home, taking him to the ER, or taking him to a regular vet. On the morning of Friday, May 8, 2009, I sent Gadget to VESH (Veterinary Emergency and Specialty Hospital) with Carol. Part of what decided me was that VESH had an ophthalmologist on staff. Even though she was not scheduled that day, I was assured she could be consulted if necessary. I had a history with SD eye crises: Jersey had glaucoma, a common problem among Bouviers, and even though I had taken her to several vets from the time I adopted her (long before it was an emergency), it had been misdiagnosed repeatedly. By the time it was diagnosed, the affected eye was permanently blind and terribly painful and had to be removed.

Jersey in profile

Jersey's blind side -- the missing eye hid by her fall (bangs)

Afraid Gadget might relive this trauma, and frustrated by my helplessness at not being able to accompany him, I spoke at length to the receptionist at VESH via HCO relay, stressing the importance of getting Gadget’s intraocular pressure checked on both eyes and compared to each other. I told her that glaucoma was a breed problem in Bouviers, that a reading within the “normal” range should be suspect if it is still much higher than the other eye, and I asked the examining vet to call me by relay during or immediately after the exam. She assured me that they were very familiar with assessing and diagnosing glaucoma. This eased my mind slightly.

If only it had been glaucoma.

Backhand

I waited. It felt like forever until the phone rang. It was Dr. C. She was the doctor who had treated Jersey when she was dying of multiple-organ failure from unknown causes in 2006. Jersey was thirteen then, retired, and whatever killed her, either an extremely fast-moving infection or cancer, at least she’d lived a long life and didn’t suffer a protracted illness. Nonetheless, I hated hearing Dr. C’s voice. I hated her, irrationally because I associated her with Jersey’s death.

Within a few minutes, I despised her.

“Sharon, it’s good you brought Gadget in,” she said. She sounded cheery, and I thought her next words would be, “It is glaucoma, but we caught it in time.” Or that it was another eye problem that could be treated since we’d moved fast.

Instead, she followed up with, “Gadget has lymphoma.”

I was shocked. I couldn’t believe it. There must be a mistake.

I started crying, but she couldn’t hear me because we were on relay. Dozens of questions leapt to mind, but I couldn’t interrupt her, because we were on relay.

She continued, “If your dog has to have cancer, lymphoma is the best cancer to have.” She explained that, depending on treatment, he could have another two to thirteen months to live.

This was the “good” news? He had the “best” cancer? I wanted to reach through the phone and hit her.

Backtrack

Over time, however, I learned the truth of what she said. Most canine cancers strike quickly and leave no options for treatment or cure. Lymphoma is one of few that usually responds well to chemotherapy. Gadget had five good months on chemotherapy. We reveled in swims and hikes at the pond, romps with other dogs, walks down new paths, even some new skills — just to add interest and a sense of accomplishment to his life.

Clear skies, clear water, Gadget returns to me.

When another cancer struck — mast cell tumors — Gadget’s decline was swift and heartbreaking. He died November 19, 2009.

I feel robbed; a year ago, I expected to have Gadget here with me today. If Gadget had represented the mean, one year post-diagnosis we’d have one more month with him in remission. That was the average for the MW protocol at VESH: thirteen months. But, for there to be an average, half the dogs must live longer, and half the dogs must live shorter. Of course, Gadget could not sit in the middle of the bell curve, because Gadget was never average.

My sweet boy, I miss you. I want you back.

As always, we welcome your comments.

-Sharon and the muse of Gadget (with Barnum, puppy-in-training)

P.S. Right before I was about to publish this post I got a note from Rochelle Lesser of The Land of PureGold Foundation . This is a wonderful organization. They educate about so many crucial issues — working dogs, humane training, canine cancer, nontoxic pet care, and more. They also gave Gadget a grant to cover some of his cancer treatment, for which I was very grateful.

Currently, they are running a contest to raise awareness about the importance of nontoxic, real food for dogs in preventing cancer and other health problems, and I was astonished to learn that so few have entered! I am only one of two so far! Rochelle even did a touching quickpress about Gadget and the last birthday cake I made for him.

The first ten people who enter the Bone Appetit Recipe Contest receive a bag of free, nutritious dog treats! (And the grand prize is phenomenal.) They gave me strength in championing Gadget’s fight to survive. Please lend your support to this very important (and fun!) contest.

Two Sides of Guardianship

Those who knew Gadget only in his later years remarked on how “good” he was. They saw him in action on youtube or in person and exclaimed over his braininess, calm, or obedience. Even rudimentary obedience skills drew admiration at the grocery store or in the doctor’s waiting room. This short video presents some of the basic behaviors that were so often remarked upon.

[Note: The excerpt referred to above is no longer available. However, you can view the captioned video as part of a longer (7 minute) video here.]

(Click here for a transcript of the video.)

I frequently heard, “I wish my dog would listen to me like that,” or “Where can I get a dog who’s that smart?”

These comments implied that I just happened to adopt a “good” dog, a naturally reliable and obedient being. Of course, this was not the case at all; this behavior was the result of a great deal of training.

Nonetheless, like everyone, Gadget was an individual. He had a unique personality. He was naturally very smart, that was obvious from the first. Further, as we all do, he sometimes made choices based primarily on his inclinations, instincts, or personal judgment.

In this week’s blog, two of my favorite anecdotes that demonstrate Gadget choosing how he interacted with people other than me, based primarily on his reason and instincts, not his training. Two very different sides of his personality emerge; what they share is Gadget acting on his insights.

Guardian, Side 1

Research indicates that perpetrators are much less willing to break into homes or attack people with dogs, especially large, dark-colored dogs. Since Gadget fit this description and had a serious bark as well, he was a terrific deterrent, without ever having to raise a paw. However, on one occasion he also proved to me that he was a thinking guard dog.

Four years ago, I was resting in bed, at night, when I heard my front door open, footfalls, and a man call out. I wasn’t expecting anyone and didn’t recognize the voice.

“Who is it?” I called. I’m sure my voice telegraphed my fright.

I couldn’t make out the response, because Gadget had taken off barking. When I crossed the few steps from my bed to the kitchen, I found a very tall man in heavy boots and a jacket halted in his tracks, Gadget protecting the entrance to my bedroom. Gadget was growling and barking bloody murder, which I heartily supported!

When I drew near, Gadget pinned himself to my side and stayed there.

The man, holding still, but yelling to make himself heard, introduced himself as our town’s fire chief. He was checking on me because I’d called the station earlier in the day. (Smoke from burning brush had been carried by the wind and  penetrated my home, making me quite ill.) Now that I could think for a minute, I saw the firefighter patches on his jacket and cap.

Relieved — and appreciative of the fire chief’s concern — I told Gadget to “down” and “quiet.” Gadget complied and held his stay, but he also held the man’s gaze. The fire chief didn’t act afraid of Gadget — in the country, and in his line of work, large, unfriendly animals probably came with the territory — but he also didn’t make any sudden movements or get any closer to me. That was fine with me because the chief’s clothing smelled of smoke and laundry detergent, which was further aggravating my multiple chemical sensitivity symptoms.

After I’d made it clear that I was okay and thanked him for his visit, the chief left. I released Gadget, hugged and praised him, fed him treats, and invited him onto the bed for a belly rub. I was shaky, recovering from the adrenaline rush and the chemical exposure, but I was also filled with pride. Gadget had acted with terrific discernment. He had appropriately responded to a threat with the very clear warning, “Don’t come any closer.” Yet, when I told him I was in charge and needed him to back off, he did, while remaining watchful.

In previous blogs I’ve written about some of the ways Gadget assisted me with the skills I’d taught him. That night, he showed not only that he could check his instincts and follow obedience commands, but also that he was prepared to defend me even when frightened, himself.

Someone unfamiliar with dog body language might not have noticed it. Though Gadget essentially stood his ground and was definitely ready to lunge if the situation called for it, his periodic hops backward as he started a new series of barks told me he was trying not to show his intimidation. Not every dog, not even every Bouvier, would have stayed by my side. In fact, his predecessor, Jersey (also a Bouvier des Flandres), when faced with something that frightened her, turned and ran!

Long ago, when my body was young, strong, and biddable, I was a self-defense instructor. There is a self-defense aphorism I passed on to all my students: Feel the fear and do it anyway. The point in learning self-defense is not that you lose your fear. On the contrary, someone who has no fear when facing danger is at greater risk of misjudging the situation. Instead, you learn how to use your fear as fuel.

That night, Gadget showed his strength despite fear in two ways. First, he was ready to defend me at his own peril. Second, he allowed me to take over the situation, even though he was still uncertain it was safe to do so. That is the true nature of courage.

Guardian, Side 2

The second example comes from my mother. When preparing Gadget’s memorial, I asked friends and family to email me memories of Gadget. One segment of my mother’s tribute touched me deeply:

I had come to stay with you for a few days last winter, just about a year ago. It was a very difficult time for you, you were so incapacitated and sick, with no voice. I couldn’t understand your signing, which stressed both of us even more.

One morning I was sitting in your living room crying softly. Gadget was on his futon, across the room by the window watching me. He came over to me and put his paw on my knee, looking into my eyes. He seemed to understand that I needed comforting. He was so genuinely sympathetic and kind. At that moment his gesture was the greatest solace in the world for me.

I always wondered if he knew my relationship to you, whether he realized I was your mother. . . . I wondered if he remembered his own mother . . . in his earliest days. Did he have a good, kind mother? Or was he instinctively, basically, kind on his own?

What is most poignant in this story, to me, are two pieces of background you wouldn’t suspect.

The first is that before this visit, my mom wasn’t especially fond of Gadget. She didn’t dislike him. She knew how important he was to me, she was impressed by how much he’d changed from the wild youth I’d adopted (and whom she’d sincerely doubted, in the beginning, was a good choice as an assistance dog — or even as a pet!), but she isn’t an indiscriminate dog lover.

However, within a week, not only did Mom come to recognize just how important Gadget was to me as a skilled assistant, but she also came to appreciate his dear, sweet soul. Mom metamorphosed into one of Gadget’s biggest fans, and when he was diagnosed with cancer six months later, she was one of our staunchest supporters in the fight for his life.

The other piece of background is that Gadget’s comforting behavior toward my mom was largely an aberration. He did not tend to bother himself with people’s mood swings — especially mine! I’m a very emotive person. If I was having a cry, Gadget let me get on with it. (I also think he felt that, as pack leader, I could take care of myself).

On the other hand, my partner, Betsy, rarely displayed her feelings. Sometimes, if she was upset, Gadget ignored her as he did me. However, on the rare occasions Betsy exhibited true distress, Gadget showed great concern, coming to her and nudging her.

Liner Notes

In my last blog, I wrote about how much I miss Gadget. Those feelings have intensified, which is why I don’t write a daily blog. It would just say, “I miss him. I miss him. I want him back. I want him back. He can’t can’t can’t be gone. I miss him. I want him back.”

That would get pretty boring for you.

In the last few days, what I miss most is the gentle presence my mother captured so well. Yesterday, February 19, was the three-month anniversary of Gadget’s death. It was also occasioned by an unexpected trip to the hospital for a very unpleasant procedure. Returning to a dark, quiet house made me yearn even more for both sides of my big-hearted guy: the guardian who barked at anyone coming to the door until he identified them, and the guardian of my heart who made arriving after an exhausting appointment a true homecoming.

-Sharon and the muse of Gadget

As always, we welcome your comments


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