Freedom! I’ve Recovered My Health!

After 18 years of severe chronic illness and disability, I have regained freedom, independence, and health. I no longer have CFIDS/ME (chronic fatigue syndrome/myalgic encephalomyelitis). I no longer have MCS (multiple chemical sensitivity) and loads of allergies. I have recovered from chronic Lyme disease, babesiosis, and bartonellosis. Along the way I have also gained a lot of joy and a sense of empowerment. Life is great!

Because my rehabilitation was built around a behavioral neuroplasticity (brain retraining) program, I was enormously assisted in my recovery process by having trained three service dogs for myself over 16 years. Studying dog training meant studying learning theory, and learning how to teach and train in an ethical and effective way — not just dogs, but all animals, including myself.

My understanding of applied behaviorism and of Nonviolent Communication (NVC) helped me to have compassion for myself. When I was struggling and unsure how to proceed, I’d just ask myself, “If my brain were a puppy, what would I do?” Then I could figure it out.

I kept “treating myself like a dog” — applying what I knew about behavior and training to myself. I also had the support and assistance of my (now former) service dog, as well as family, friends, and (now former) personal assistants. That made a big difference for me, too.

This all started in August 2013 when I borrowed* the DVDs and workbook for the Dynamic Neural Retraining System (DNRS) from a MCS support group I was involved with. I had heard about DNRS and the Gupta Amygdala Retraining Programme** for a few years — mostly from healthy people or people who had MCS who said that these programs could “cure” MCS. I had been irritated, offended, and confused when I heard this. I thought it sounded like a total crock. I borrowed the DNRS program mostly out of curiosity. I expected to review it for my blog and to indicate what I thought were its pros and cons — and thereby finally silence the people who were suggesting to me that I try it. I never considered it would be the start of a marvelous upheaval in my life.

I watched DNRS over the course of several days. I discovered it was based on science, on how the brain affects the other organs and systems of the body, and how the brain’s function and anatomy can be changed by neuroplastic therapy. I learned that we can use our conscious minds to alter the unconscious actions of our brains. I started to wonder if it was actually possible I might recover, which was not something I had considered remotely possible for well over a decade. It was thrilling and terrifying.

During those first days, I was, as I had been for many years…

  • In bed virtually around the clock
  • Using a powerchair to get around the house, except on the relatively rare occasions I was able to walk to my adjoining bathroom
  • Almost never able to leave the house
  • Nonverbal or dysphonic (speech impaired) much of the time
  • Using oxygen and a carbon filter mask whenever I was around people (other than my assistants or fragrance-free friends and family) because of sensitivity to fumes
  • On many, many medications and supplements
  • In severe pain
  • Living with insomnia, impaired cognition, migraines, hypersensitivity to many stimuli (sound, smells, touch), multiple food and inhalant allergies, and many other chronic symptoms
  • Reliant on five personal care assistants for help with bathing, dressing, making meals, cleaning, errands, going to medical appointments, and sometimes things like transfers, eating, and going to the bathroom

There’s too much to tell to fit it in one post. I am working on a memoir — a big project! Meanwhile, here’s a month-by-month summary of some of the highlights of the last nine months. I’m using some before and after photos and videos to illustrate the metamorphosis I have gone through — pictures from the last few years before I started my recovery program, and then what has happened lately. Enjoy!

August 2013

Sharon asleep in bed with Gadget sleeping between her legs, his head on her thigh. On the bed is a lap desk, phone, headset, baby wipes, and computer keyboard. On an overbed table are water bottles, paper, pens, pills, and more.

June 2009 — I was in bed all the time, so I kept everything I needed, day or night, in my bed (including Gadget, my second service dog).

[Picture description: Sharon asleep in bed with Gadget sleeping between her legs, his head on her thigh. On the bed is a lap desk, phone, headset, baby wipes, and computer keyboard. On an overbed table are water bottles, paper, pens, pills, and more.]

(Note: I did alt tag the pictures, but a while back I heard from someone that the alt tags were not coming through with their screen readers, so I have pasted descriptions under the pics, too. If the alt tags are working for everyone, though, I’ll remove the descriptions from the main text so people won’t have to read them twice. Let me know what works better for you!)

After I started doing brain retraining, I had a LOT of rehab work to do on my whole body. One of the things I started doing was yoga — to improve strength and balance. In the beginning, this meant doing “child pose” in bed for a few seconds. It was very painful for me, so I couldn’t do it longer.

Then, I started working on “tree pose.” Tree pose is normally done standing on one foot. You put the sole of one foot against the calf or thigh of the other, and raise your arms into the air above your head. But I started tree pose with . . .

Standing. On both feet.

I worked on being balanced and strong enough to stand still. (I have since learned that this is actually a yoga pose — standing still and tall on both feet is called mountain pose or tadasana.) But that didn’t matter. My yoga practice was doing child pose in bed and standing on the floor.

I actually owned two yoga mats because I had used them for training Barnum “go to mat.” I had wanted a mat that wouldn’t slide around on the floor and that would be long and narrow to help him learn to keep his whole body on the mat. (Here’s a one-and-a-half minute “go to mat” clicker training session I videoed three years ago.) It never occurred to me I would use the yoga mat for . . . yoga! When I got it out to work on standing, Barnum would run to it and lie down on it, but I taught him pretty quickly that his NEW job when the  yoga mat came out was to stand next to it and help me balance. Here are some pictures of us working on tree pose at the end of August 2013.

Sharon in pink pants rolled up above the knee, a navy blue treat pouch around her waist, and a khaki green T-shirt on a blue yoga mat in her living room. Barnum stands next to her. She has her right leg bent, the right foot against her left calf. Her left hand rests on Barnum's shoulders, and her right hand is lifted a few inches off her thigh.

I practiced every day standing on both feet, and then eventually on one foot and then slowly raising an arm, steadying myself with Barnum on the other side. I wore my treat pouch so I could reinforce Barnum for this new behavior of bracing me next to the mat instead of lying on the mat.

Similar picture to the previous, but Sharon'right arm is raised higher, halfway between waist and shoulder height.

I tried to be patient with myself and shape myself toward my eventual goal bit-by-bit (as I would if I were a dog).

Similar to previous pictures, but with Sharon standing on her right leg, and Barnum on her right side, and both arms are up and out to the side. Sharon has a big smile on her face.

I practiced on both sides and was eventually able to let go of the dog. Look, Ma, no hands!

[Picture descriptions: #1 -- Sharon in pink pants rolled up above the knee, a navy blue treat pouch around her waist, and a khaki green T-shirt on a blue yoga mat in her living room. Barnum stands next to her. She has her right leg bent, the right foot against her left calf. Her left hand rests on Barnum's shoulders, and her right hand is lifted a few inches off her thigh.. #2 -- Similar picture to the previous, but Sharon'right arm is raised higher, halfway between waist and shoulder height. #3 -- Similar to previous pictures, but with Sharon standing on her right leg, and Barnum on her right side, and both arms are up and out to the side. Sharon has a big smile on her face.]

September 2013

Below is a picture from May 2011. I remember this day not because it was unusual or different but because it was a completely normal, typical day that I decided to document and share on my blog. Normally on a lousy day I would NOT have taken a picture of myself feeling and looking like hell, in pain and sick. On a day like this I usually would not have gotten out of bed, but I did this day, with tremendous effort, to have my PICC line dressing changed by the visiting nurse. I had my eyes shut most of the time due to migraine and light sensitivity. I decided to document it because I was frustrated with people who knew me from the online world not understanding the severity of my situation. I was using my mask and oxygen because of scents I smelled on the nurse’s clothing (which she tried very hard not to bring, but which was impossible because my nose was bionic!).

Sharon slumped in powerchair, mask on her face, one arm hanging down and the other resting on the table while the nurse works on it.

On a day like this, it was all I could manage to get out of bed, with the help of PCAs and pain killers.

[Picture descriptions: Sharon slumped in powerchair, mask on her face, one arm hanging down and the other resting on the table while the nurse works on it.]

As I started walking more around the house, I also wanted to be active outdoors with Barnum. I went to the pond, a favorite spot for both of us. I had been to the pond since I’d been sick, including with Barnum when he was a puppy, but it’s not something I was able to do that often because, even in my powerchair, it was exhausting for me to go out.

Sharon, bundled up in a turtleneck and wool hat, reclines in a very big powerchair watching little baby puppy Barnum sniffing at some brown grass under some pine trees.

Baby Barnum and I did have fun at the pond when he was a wee lad — April 2010.

Barnum, about the size of a cat, in the air with ears flying, leaps over a very small stream. Sharon is in the background, watching and smiling.

Barnum loved to leap over this little stream, which must have seemed big to him as a puppy. Of course, looking back, I couldn’t get over that part of the stream then, myself!

[Pictures descriptions: #1: Sharon, bundled up in a turtleneck and wool hat, reclines in a very big powerchair watching little baby puppy Barnum sniffing at some brown grass under some pine trees. #2: Barnum, about the size of a cat, in the air with ears flying, leaps over a very small stream. Sharon is in the background, watching and smiling.]

Now, in September 2013, I was still using my powerchair to get from the van to the pond, but I finally had the opportunity to swim. I have loved swimming my whole life, and when I was less sick, I had trained my previous service dog, Gadget, to pull me around in the water.

But I had had a PICC line for all of Barnum’s life, and you cannot swim in a pond with a PICC line, so I’d never been in the water with him before. I had my PICC line removed in March, after four-and-a-half years of intravenous antibiotics.

I had also been much too sick to swim in the pond for many years. But now I was so excited to try to do it. This is Barnum and me in September 2013 on a trip to the pond.

Sharon in a maroon tankini standing in knee-high brownish water with many tall trees, mostly pine trees, on the other side of the pond.

I have a lot of pictures of me with my arms raised like that. When I couldn’t talk, I signed a lot, and this is the end of the sign for “Free!” Even though I can talk ALL THE TIME now, I used this pose a lot because it felt strong and celebratory for me. To me, it says, “I’m FREEEEEEE!”

Sharon standing in the water looking down at Barnum, who is up to his chest in the water, drinking. He's wearing an orange and black visibility vest.

Barnum liked to wade in and have a drink, but he was not so into the swimming at this stage.

Sharon's head and shoulders emerge from the water, the rest of her is submerged. Her hair is wet, and she has a really big smile.

Sooooo HAPPY to be in the water!

[Picture descriptions: #1: Sharon in a maroon tankini standing in knee-high brownish water with many tall trees, mostly pine trees, on the other side of the pond. She has her hands up in the air, extended above her head, in fists. #2: Sharon standing in the water looking down at Barnum, who is up to his chest in the water, drinking. He's wearing an orange and black visibility vest. #3: Sharon's head and shoulders emerge from the water, the rest of her is submerged. Her hair is wet, and she has a really big smile.]

Once I started standing and walking, my feet started hurting quite a bit. Walking led to me developing plantar fasciitis and then also bunions, and tendinitis in my ankles. But, all of that has been getting better with stretches and physical therapy and time and orthotics for fallen arches.

But, I had not been in a shoe store in almost twenty years. Because of my MCS, I wasn’t able to go in one. The only shoes I had were from online stores that sold organic hemp shoes or canvas high-tops that could go through the washer. None of my shoes had any arch support. I had only worn slippers and socks, except for very occasional doctors appointments, for about a decade.

I was so excited and happy when I went to a shoe store with Betsy and my parents after I started to get better! It was one of the happiest moments of my life! I kept saying to Betsy, “I’m in a shoe store! I’m in a shoe store!” My dad took this picture. (I have blurred out the face of the shoe salesman because I didn’t get his permission to post his picture on the internet!)

Sharon sits on a bench in a shoe store next to Betsy. There are racks of sneakers and other shoes around them. A man with his face blurred out is adjusting a shoe on his knee in front of Sharon.

I’m IN A SHOE STORE!

[Picture description: Sharon sits on a bench in a shoe store next to Betsy. There are racks of sneakers and other shoes around them. A man with his face blurred out is adjusting a shoe on his knee in front of Sharon.]

There were very few shoes in the store that fit me because my feet, which have always been big and wide, had apparently gotten even wider in the past 18 years. But there was one sneaker and one sturdy sandal that fit me and had good arch support and comfortable soles, so I got those. I was still using a powerchair most of the time at this point, including to get in and out of the shoe store. It was such a relief to my burning soles to put on the new sneakers that I wanted to wear them out of the store. The salesman said to me, “Now you’re ready to run a marathon!”

He was kidding, but I thought, “Maybe. You never know!”

October 2013

I’m incredibly fortunate that just a few minutes from my home, there is a horse-assisted therapy program. Su, who runs it, works with people on the autism spectrum. I met with her to discuss how she could work with me to improve my balance, coordination, strength, proprioception, and other issues. I have always loved all animals, but after I got sick, over the years I became allergic to almost anything with fur. One of the reason all my service dogs have been Bouviers is that they are hypoallergenic — don’t shed and have hair instead of fur.

Working with animals has always brought me joy and helped me function my best. In this video working with Gadget in 2008, at that time it was rare for me to be able to be out of bed so much and to have my voice working as well as it did in most of the video, but working with Gadget tended to bring out the best in me. Link to video for email subscribers.

[Transcript of this video is here. Open captioned version of the video is here.]

I thought that now that my immune system was normalizing again, I would be able to work with the horses and that being around such a large animal would be steadying for me. It was a wonderful experience!

In the beginning I was not yet stable enough, and I weighed too much, to ride the session horses. But I could groom them, lead them, talk to them, and other things. Su was pretty amazed when, after we first met to discuss my work, the next week I stood most of the time instead of sitting in my chair. And pretty soon after that, I was walking from the car to the barn! She didn’t recognize me the first time I walked in! (There have been so many people who have known me for years but didn’t recognize me when they saw me standing and outside of my house that I have gotten used to it.) Here’s me with Patience (who lives up to her name!).

Sharon walks tall on the dirt, knee raised up high, holding a lead for an auburn horse who follows her. Small green plants along a fence are in the background.

I’m walking around with a horse!

[Picture description: Sharon walks tall on the dirt, knee raised up high, holding a lead for an auburn horse who follows her. Small green plants along a fence are in the background.]

By the end of the month, I was able to start riding Patience for very short periods, bareback (because the saddle adds a lot of weight that would have made me too heavy for her).

Sharon, wearing a purple sweatshirt, blue jeans, and new sneakers with purple laces, wears a black riding helmet sitting on Patience, a very pretty auburn horse. Sharon is leaning forward but smiling, and is bracing herself with her hands on the horse's shoulders. Su is walking next to Patience, leading her and holding her lead, in knee-high boots and a baseball cap. She is talking encouragingly to Sharon. There are trees and bushes and a fence in the background.

I’M ON A HORSE!

[Description: Sharon, wearing a purple sweatshirt, blue jeans, and new sneakers with purple laces, wears a black riding helmet sitting on Patience, a very pretty auburn horse. Sharon is leaning forward but smiling, and is bracing herself with her hands on the horse's shoulders. Su is walking next to Patience, leading her and holding her lead, in knee-high boots and a baseball cap. She is talking encouragingly to Sharon. There are trees and bushes and a fence in the background.]

November 2013

I originally got my driver’s license when I was a teenager. But after I got CFIDS and MCS, due to cognitive impairment, I started to have accidents occasionally. I sometimes had trouble making quick decisions. (I think this was a processing speed issue.) So I limited my driving to short distances. If I wasn’t functioning well or if it was a longer drive, I had someone else drive me.

After I got Lyme in 2007, I was at first too sick, exhausted, and in pain to drive. Later, when I became unable to move my limbs, especially my legs, much of the time, driving was not an option! So, my license expired, and I wasn’t able to renew it. Here’s a captioned video I made in January 2013 that shows where I was before I started DNRS. This was when I was at the end of Lyme treatment, killing the last of the tick-borne parasites in my system. [Link to transcript of video.]

I found out that in order to get a driver’s license again, I’d need to take the written learner’s permit test, then take and pass the road test. I began to work very hard on this new goal! I got really serious about improving my cognitive function, processing speed, hand-eye coordination, and other skills. I played jacks, memorized poetry, and played Lumosity computer games every day.

I studied and studied all the (new) rules of the road, regulations, penalties for teen driving infractions (even though I’d left teenagerhood behind several decades ago, I took the same test as 16-year-olds!). Near the end of of October, I took and passed the learner’s permit test with 100 percent!

In November, I decided to sell my old cargo van, and give away my powerchair and wheelchair lift.

Back of a dark green cargo van with rear doors open. A black lift with a metal arm and black webbing holds a powerchair with a gray captain's seat and a cherry-apple red base, in the air.

I took this picture to post the van and equipment on Craigslist.

[Description: Back of a dark green cargo van with rear doors open. A black lift with a metal arm and black webbing holds a powerchair with a gray captain's seat and a cherry-apple red base, in the air.]

I’d bought this cargo van in 2002 because it would fit a lift and powerchair, and it was so stripped down inside — with no carpet, upholstery, headliner, or backseat — that it was one of the few vehicles I could tolerate with MCS. But, it was in constant need of repair and got terrible mileage, so I was excited to get rid of it! It was a big leap of faith — scary, exciting, happy, sad — to say goodbye to my van.

December 2013

What a wonderful month December was! What a difference a year can make!

The previous winter, I was still in bed full-time. I’d found a Youtube of a log burning in a fireplace. Here’s a picture of me in 2012 in bed (of course), eating my dinner from my lap desk (which is how I ate all my meals), “warming my hands” in front of the “fire” on my computer screen.

Sharon in bed with a red wool cap on, red quilts, pillows, and sheets. She is sitting, propped up by pillows, in front of her overbed table with a large computer screen on it. A picture of a fire is on the screen, and she is smiling and holding her hands in front of it as if she is warming them.  A meal on a lap desk is on her lap. There are things all over the bed, such as a computer keyboard, water bottle, pill box, baby wipes, paper, pens.

Thank goodness for my sense of humor! (And the internet!)

[Description: Sharon in bed with a red wool cap and blue hoodie, red quilts, pillows, and sheets. She is sitting, propped up by pillows, in front of her overbed table with a large computer screen on it. A picture of a fire is on the screen, and she is smiling and holding her hands in front of it as if she is warming them.  A meal on a lap desk is on her lap. There are things all over the bed, such as a computer keyboard, water bottle, pill box, baby wipes, paper, pens.]

This December was quite different! I got to celebrate Hanukkah with real candles for the first time in 19 years! We also were able to start using our pellet stove, instead of relying on electric heat, which is very expensive and inefficient (thus, the house was freezing most of the year), and I got my driver’s license!

Sharon, wearing a tan wool hat, white turtleneck, and purple hoodie, smiling hugely, holds up a piece of paper with her picture on it. She's in a cluttered living room.

That’s my brand-new license to operate a motor vehicle, people!

A menorah, with all the candles lit, arranged in rainbow colors. It sits on a lit pellet stove, with a fire going behind the glass.

A very gay (and toasty) Hanukkah!

Sharon leans sideways over the menorah, with a big smile. It lights the right side of her face from below.

Happy holidays to me!

[Picture descriptions: #1: Sharon, wearing a tan wool hat, white turtleneck, and purple hoodie, smiling hugely, holds up a piece of paper with her picture on it. She's in a cluttered living room.Happy holidays to me! #2: A menorah, with all the candles lit, arranged in rainbow colors. It sits on a lit pellet stove, with a fire going behind the glass. #3: Sharon leans sideways over the menorah, with a big smile. It lights the right side of her face from below.)

January 2014

Oh, one thing I haven't mentioned yet (well, there are a million things), is that I had two unexpected bonuses of recovery that I hadn't anticipated when I first started. One was that I had a sharp decrease in my compulsive eating. I have had disordered eating and body dysmorphia for most of my life, and in the last few years had increasingly eaten compulsively. When I started doing DNRS, that decreased sharply.

The other benefit is that I have recovered from PTSD. I developed PTSD at the end of December 2008, when I was unable to evacuate from my home during a week-long power outage after a severe ice storm. Because I was too ill to leave bed and unable to tolerate other environments due to MCS, I was stranded without heat, power, water, or phone, and I was terrified. January of 2009 had been a horrible month for me -- still recovering from fresh trauma, the loss of an important friendship, and the death of one of my best friends, I developed a fear of the dark and various other PTSD symptoms -- which I healed during my recovery.

Here's a video I made about training Barnum to help with agitation, which was a sort of anxious, explosive rage that I used to experience due to tick-borne disease. It was not helped by having PTSD! (The reason I'm barely moving nor speaking in this video is partly because it's better for training to have a quiet voice and body and partly that I wasn't really capable of speaking or moving at that time.)

[Video description:

Title: Clicker Training a Psychiatric Service Skill: Soothing Agitation.

Opening screen: White letters on black background, text: Sharon & Barnum Train a Psychiatric Service Skill

Text: Shaping head press into thigh to dissipate handler agitation.

Sharon lies in bed. Barnum lies next to her. She clicks an i-Click when Barnum puts his head on her thigh and gives him a treat from a plastic bag on her side for each click.

Text: I start with Barnum chin-targeting my hand.

Text: Once he's offering chin-on-thigh, I keep up my rate of reinforcement.

Sharon holds her hand next to her thigh and clicks Barnum for putting his chin on her hand. Then she holds her hand on her thigh, clicking chin target there, then she moves her hand away and waits to see what Barnum will do. He puts his chin on her thigh, and she clicks and treats that. They repeat that a few times.

Text: Then I start selecting for longer or heavier contact.

Text: At our next session, I start selecting for cheek/shoulder rolls.

Sharon is wearing different clothing, but lying in the same place on her bed. She clicks and treats Barnum for putting his chin on her thigh. She holds off on some clicks and he experiments with moving his cheek closer to her center line, which earns him clicks.

Text: Starring Barnum as SDiT & Sharon as Trainer/Handler

See more videos at our blog: http://aftergadget.wordpress.com]

This year I reclaimed the month of January! I went for a driver’s evaluation at a rehab facility. Yes, I already had my new license and new (used) car, however my primary care doctor wanted me to undergo an evaluation to make sure I was really safe on the roads.

The highlight of the evaluation was a test called “Trail-Making Test, Part B.” There are a bunch of letters and numbers on a page, and you start with the number one and and with the letter A, making a line from 1 to A to 2 to B to 3, etc. The occupational therapist who was evaluating me said she would time it. It took me 39.7 seconds to complete it. I had no idea whether that was a good time or not until the OT said, “That’s the fastest I’ve ever had anyone do it.”

Here’s a picture I took of the test after I completed it (because I was excited, and because I’ve been documenting the hell out of this journey).

A piece of paper with numbers one through 12 and letters A through L, with a pencil line connecting them all in a row. It looks kind of like a maze.

Actually, it turns out this is a Rorschach test. It’s a dog, right?

[Description: A piece of paper with numbers one through 12 and letters A through L, with a pencil line connecting them all in a row. It looks kind of like a maze.]

I asked her what it was used to evaluate, and she said processing time. She said it should take two minutes or less and that studies have found a high correlation between car accidents and taking three minutes or more to complete this test. A long time doing trail-making tends to be predictive of accidents.

It was good to know my processing time has improved because the example she gave of the kind of accidents their patients have when they are processing too slowly — misjudging how fast a car is coming, and pulling out into on-coming traffic — was exactly how I got into my worst accident, several years ago. So, I am glad my processing speed is where it should be now!

February 2014

I celebrated my six-month anniversary of beginning DNRS at a retreat center, meditating six to eight times a day, in silence, with a hundred other people. PARTY, dude! Well, no, but I gained some valuable insights, most of which boiled down to: Be kind to myself and try to forgive my body. No pictures or videos of the retreat.

However, one really cool thing I did that month that I do have pictures of was taking Barnum for a walk around the pond, which was frozen. So, we got to walk ON the ice! I hadn’t been on a frozen pond or lake probably since I was a teen. It was really beautiful. See if you can figure out which picture is from February of this year, and which one is from February of 2011, okay? Ready, set, go!

Sharon lies in bed. Lighting is dim. Her eyes are shut, and her hands rest on her belly. There is an infusion pump on her leg, and a dressing and PICC line can be seen on her left biceps.

Is this infusing, I mean confusing, anyone?

A great expanse of snow-covered ice covers the lower half of the picture, and a sky that is just starting to pinken for sunset covers most of the top, above a line of evergreens. In the middle, Sharon -- in a black snowsuit -- and Barnum in an orange vest -- are running together on the ice.

Happy fluffy dog! Happy fluffy human!

[Picture descriptions: #1: Sharon lies in bed. Lighting is dim. Her eyes are shut, and her hands rest on her belly. There is an infusion pump on her leg, and a dressing and PICC line can be seen on her left biceps. #2: A great expanse of snow-covered ice covers the lower half of the picture, and a sky that is just starting to pinken for sunset covers most of the top, above a line of evergreens. In the middle, Sharon -- in a black snowsuit -- and Barnum in an orange vest -- are running together on the ice.]

March 2014

As part of my ongoing quest to become A PROFESSIONAL DOG TRAINER now that I can be out and about among people and dogs, I went to Clicker Expo in Norfolk, Virginia at the end of March! Yeehaw! I learned a lot!

Here are two of my favorite pictures.

Sharon stands in a hotel lobby, with couches behind and on either side of her, and above her, projected onto the wall, it says, "ClickerExpo" and has the Karen Pryor clicker logo. Sharon has her arms extended up into the air, hands out, like she is showcasing the bat signal.

It’s subtle, but if you really squint, you can probably figure out what conference I’m at.

Sharon stands with a name badge and a clicker on a lanyard around her neck. Karen Pryor, who has short, blond hair and celebrated her eightieth birthday last year has her arm around Sharon and is smiling.

That woman with her arm around me looks an awful lot like Karen Pryor, doesn’t it?

[Description: #1: Sharon stands in a hotel lobby, with couches behind and on either side of her, and above her, projected onto the wall, it says, "ClickerExpo" and has the Karen Pryor clicker logo. Sharon has her arms extended up into the air, hands out, like she is showcasing the bat signal. #2: Sharon stands with a name badge and a clicker on a lanyard around her neck. Karen Pryor, who has short, blond hair and celebrated her eightieth birthday last year has her arm around Sharon and is smiling.]

April 2014

It’s hard to top a trip to Virginia to learn from some of the best animal trainers in the world, isn’t it?

Yet, I did! I went to Florida to visit my parents! They moved there ten years ago, and I had never seen where they live. Betsy and I went and had Passover with them. We went to the beach, played pool, played table tennis, and did lots of amazing bird watching. I flew on a plane! I bicycled to a bald eagle nest! I swam in the ocean (repeatedly)!

Sharon stands in white tank top next to a boardwalk railing. Behind her is an expanse of green grass, lush trees, and a cluster of orange-billed dark brown ducks that are too far away to be able to identify.

That’s me standing in front of some black-bellied whistling ducks, but you knew that, right?

Sharon's mom, Doris, on the left, smiling and talking so her mouth is a little open, her father, Manny, in the middle with a big smile, and Sharon on the right in a purple shirt, also smiling. They have their arms around each other and are sitting in a restaurant booth with people in the background.

That’s me with my parents at a restaurant because I can eat anything and go anywhere now!

Sharon stands mid-thigh deep in the middle of moving, frothy ocean. All that is visible is the water and a strip of cloudy sky, with Sharon in a black swimsuit in the middle of it.

My favorite place to be in the world: the ocean.

[Picture descriptions: Sharon stands in white tank top next to a boardwalk railing. Behind her is an expanse of green grass, lush trees, and a cluster of orange-billed dark brown ducks that are too far away to be able to identify. #2: Sharon's mom, Doris, on the left, smiling and talking so her mouth is a little open, her father, Manny, in the middle with a big smile, and Sharon on the right in a purple shirt, also smiling. They have their arms around each other and are sitting in a restaurant booth with people in the background. #3: Sharon stands mid-thigh deep in the middle of moving, frothy ocean. All that is visible is the water and a strip of cloudy sky, with Sharon in a black swimsuit in the middle of it.]

My New Career Trajectory

Assistance Dog Blog Carnival graphic. A square graphic, with a lavender background. A leggy purple dog of unidentifiable breed, with floppy ears and a curly tail, in silhouette, is in the center. Words are in dark blue, a font that looks like it's dancing a bit.

Freedom!

This post is part of the Assistance Dog Blog Carnival, which I founded and have been the organizer of since 2010. Because I’ve been so busy with my rehabilitation and recovery work for the last nine months, I really lost track of a lot of my online work, including managing the Carnival. Cyndy Otty of Gentle Wit, who is hosting this month’s carnival (please go check out her call for entries!) has been terrific about picking up the slack.

I couldn’t believe it when Cyndy announced that the theme for this month’s carnival was “Freedom”! Freedom has been my focus and buzzword since August! Freedom has been my goal and my joy these past nine months! Freedom, for me, means I am no longer a service dog partner. Ain’t life weird? (And wonderful?!)

I waited to write this post until I felt comfortable “going public” about my transformation of the last several months. One of the things I wanted to accomplish before going public was not to have to rely on personal care assistants anymore, which I have done. I laid off all five of them slowly, over a period of months. I’m very grateful to each of them and glad that they seem to be doing well without me.

The other thing I wanted to have in place was to be on Social Security’s Ticket to Work program. I’ve been working with a career counselor to help me on the road to becoming a professional dog trainer. In February I started assisting a great trainer who teaches dog training classes for the local shelter, and tomorrow I begin an internship with another local trainer and behaviorist. I hope to attend the Karen Pryor Academy before the end of the year.

I don’t know what I’ll end up doing, exactly. My dream is to help disabled people train their own assistance dogs, since the assistance dog world has been my home and owner-training my passion for the last sixteen years. I’m also interested in how dogs (or other animals) could work as therapy animals for people doing neuroplastic recovery. But it may take some time before I can work professionally in the service dog or therapy dog field. I might do more “standard” dog training first, to get myself more well-rounded.

I am also doing neuroplasticity coaching. I can talk more about that another time, but I have tried to make my site a good resource for people who want to learn more about neuroplasticity. I have a page about neuroplasticity, a page about my recovery, a recommended books list, a neuroplasticity FAQ (frequently asked questions), and a page about my coaching.

Barnum’s Job Description Changes; Assistance Dog Blog Carnival Moves to New Home

My position in the assistance dog world has changed because I am no longer a service dog partner/handler. I no longer need a service dog! This, and laying off my PCAs, have been the only sad things about my recovery. My plan is for Barnum to become my sport and demo dog as I need to get more different kinds of dog training and handling experience. He has had a lot of health problems this year, though, so in a way it’s good that he’s getting “time off” right now.

Because of my not keeping up with the Carnival, a few weeks ago, Cyndy and Brooke of Ruled by Paws generously offered to take over the running of ADBC! They didn’t even know that Barnum was no longer a service dog. I took them up on it because I am incredibly busy now, and I want the Carnival to continue with the kind of care, competence, and consistency I know they will bring. And also, while I encourage people who are not assistance dog partners to participate in ADBC, and I hope to continue to post as a member of the service dog community (having trained three SDs), I do think the Carnival should be run by people who are assistance dog handlers. That is not me anymore.

So, please stay tuned for this and future Assistance Dog Blog Carnivals. (If Cyndy and Brooke post a link to the new home of ADBC, I’ll update this post with the link.) And please make sure to check out the next carnival — in July — which will be hosted by Laura vanArendonk Baugh of CIA, who is raising a puppy for Guide Dogs for the Blind. (And who is Karen Pryor Academy faculty, so I met her in person at ClickerExpo!) She seems to be getting a real crash course in how the general public responds to assistance dogs and future guide dogs!

Life is going swimmingly!

To end this post, one of the videos that makes me the happiest yet: me swimming in the YMCA pool. I started swimming in the YMCA (very chlorinated) pool two months after I started my recovery program! Swimming has been great for me because I love it and because it’s a way to get exercise without putting strain on my feet. At first I could only swim about 400 yards, but now I do about 1800 yards (36 laps — or a little over a mile) twice a week.

Every few months I video myself so I can see if I am doing things that can be improved, especially things that can cause injury. The video below is my most recent. I am not training for any races or anything, just enjoying life in and out of the water! Those who know what I went through with MCS, CFIDS, and Lyme know what a miracle this two-minute-one-hundred-yard video is!

Love,

Sharon and Barnum the Demo Dog-in-Training

*I’ve heard from several people who have asked me how they can borrow the DNRS program. I don’t know. I’d been a member of the group I borrowed it from for a few years, and my understanding is it is part of their lending library for members. I am not comfortable asking them to lend it to people they don’t know.

Likewise, I have been happy to lend my own copy of the DNRS program to friends and neighbors who could not afford to buy it for themselves. They have always returned it to me, but I am not comfortable lending my copy to people I don’t know well; it’s too valuable to me to risk it getting damaged or lost.

I am planning a fundraiser to get copies of the DNRS program into my local public library where it can be accessed by anyone in my part of the state. If you have the money to buy the program, or a way to get the money, I strongly encourage you to buy it. If you don’t, try asking around to people online or in your illness communities. I know of people who have accessed copies this way.

**I have no experience of the Gupta program, so I can’t say whether I would have found it as useful as I found DNRS.

No Salad Left Behind

I’m taking a break from blogging about dog training, neuroplasticity, and behaviorism to cross-post this article on the critical issue of lettuce rescue and rehabilitation, which is the work of the nonprofit group, No Salad Left Behind.

No Salad Left Behind is a rescue and sanctuary for lettuces that have been attacked — through no fault of their own — by roving gangs of predatory herbivores or even lone squirrel vigilantes. NSLB is located in a secret location in southern New England, home to a struggling effort to protect lettuces from the Bun-Bun Gang.

“We are considering taking in arugula and kale eventually, if we can raise the green,” said Heda Romaine, director of the sanctuary. “For now, we’ve decided to focus on tender, sweet lettuces because they are the most at risk. It’s hard because not everyone appreciates or is even aware of the problem.”

Here in rural New England, even in seemingly peaceful quiet towns, lettuce attacks are all too common. Every spring, a new gardener or farmer may face empty beds.

“Three days ago, my lettuce was doing great,” says Sharon Wachsler, a new member of NSLB. “Then, yesterday I went out to plant some basil, and where my lettuce used to be, it was just empty. It was just dirt. At first I didn’t even see the little pieces of stem where the lettuce used to be.”

Wachsler takes us on a tour of her “garden” and shows the place where once had thrived a young, vibrant community of red romaine.

“This is the only lettuce that survived unscathed,” Wachsler says. “I think it was because it was not near all the other lettuce. But how long will it survive if the rabbit or squirrel should come back?”

A very small romaine lettuce plant, green with red, about eight or ten leaves, surrounded by tiny basil seedlings.

This courageous young plant has survived with its leaves intact — but for how long?

“These weren’t bad seeds,” stresses Wachsler, gesturing to the desolate earth where once had stood her hopes for a decent crop. “They were organic, from the town’s seed saving library. I had great hopes for them passing on their seeds to the next generation of the library, but now, who knows?”

Who knows, indeed. Eight of Wachsler’s lettuces have been moved to the NSLB sanctuary. There, in large pots behind a chain link fence, Wachsler hopes the little roots and nubs of stems — cut down by a pair of cruel incisors in the prime of their youth – will eventually make a recovery. Hopes are not high.

“I used to have pet rabbits,” says Wachsler, ruefully. “They can squeeze through really small spaces. Their bodies are like Jell-O. If they want to get to the lettuce, they’re going to get to it.

“I’ve just started feeding my dog dehydrated rabbit,” Wachsler adds. “Do you think this could be retribution?”

Two big, clay-colored pots filled with dirt. The stumps of lettuce plants are barely visible.

Recently transplanted lettuce

When asked what the chances are for the new transplants, Ms. Romaine hedges. “These plants have been through an ordeal. After having all their leaves eaten, they’ve been uprooted from the only soil they knew and brought to these isolated pots in a gated community. They’re traumatized. We’re just playing a waiting game.”

While most in the community support the efforts of NSLB, the group’s name has stirred up some controversy.

“It’s offensive,” says Isa Bergh. “Lettuce is not just for salad. It has a lot of other possibilities. You can use it as a garnish, or in a sandwich, or in Caesar salad, or . . . Oh wait, that’s a salad. Um, I mean Waldorf sa– . . . well, you can use it for . . . OK, that’s not the point!” Bergh says. “Lettuce is not just for people to eat! It wants to soak up the sun, to flower, to bear seeds, just like any other plant.”

“This kind of attitude that lettuce is just, you know, ‘rabbit food’ is what makes it vulnerable to these kinds of attacks!” Insists Bergh, though critics point out that rabbits have never paid much attention to what people post on blogs. “At least animals can run or fight if someone is trying to eat them, but plants are defenseless,” says Bergh, who eats neither plants or animals, surviving on steam – nicknamed “the Hot Air Diet.”

“I don’t want to get into the politics,” Romaine deflects the question. “We’re here for the lettuces. That’s our position.”

The herbivorous assailant or assailants is still at large. While it’s possible a squirrel or chipmunk is behind the midnight snack-attack, NSLB says they suspect Fuzzy Lapin, who has been known to steal into gardens at night and eat tender young greens. Wachsler confirmed that she has seen “a suspicious rabbit” in her yard and supplied us with the photograph below.

Very cute wild brown rabbit with while tale, nibbling a blackberry vine on a bed of gravel.

Rogue rabbit, wanted for questioning, could be notorious salad eater, “Fuzzy” Lapin.

“I used to think the rabbits were cute!” Wachsler groans. “I even wrote a humorous blog post about this rabbit a few years ago. I’ll never do anything like that again!”

The Difference between Reinforcers and Rewards

Some of you are dog enthusiasts. Some of you are interested in neuroplasticity. I hope this post is of interest to both! Let’s find out….

Recently I sent an email to a group of friends and clients who have been using the Dynamic Neural Retraining System (DNRS) neuroplastic program. The main “work” of DNRS is a behavior that takes between ten and 20 minutes to complete, called the Limbic Retraining Steps (LRS). Program participants are instructed to do LRS three to six times (equivalent to one hour) per day.

One of the main problems I hear about from people who are struggling with DNRS — and it was a challenge for me, too — is completing the daily quota of LRS. I used a lot of “behaviorism tricks” to get myself to do LRS (train my brain) as much as possible. So, in the email I sent to other DNRS students, I encouraged people who were having trouble sticking to their daily program to set up a reinforcement schedule for LRS.

While writing this email, I waffled about which words to use — whether to use “reinforcement” or “reward.” I really wanted to use “reinforcement” because it was more accurate, but I worried that if I sent out an email about “reinforcement schedules” and “reinforcers,” it would sound too technical and jargony. Although I mostly spoke of “reinforcement,” in a couple of places, I wrote “reward” to try to be more “accessible.”

I got an email back from someone who said she does not need rewards to do LRS, that she finds doing LRS rewarding in itself, and that she often attaches LRS to another activity in her day. I thought, “Well, that’s because LRS is supposed to be a conditioned reinforcer, so that is working for you the way it was intended! And then you’re using Premack’s Principle to further reinforce it!”

But that probably would not be meaningful to her because she’s not a behaviorism nerd, like me. But I really want more people to know what reinforcement is so they can use it to better their lives and the lives of the people and animals in their care. So I’m writing this post to try to say some of the things I talked myself out of writing in that email.

At the end of this post, I’ll come back around to LRS and brain retraining and why this all matters….

Here’s the first thing you need to know, the definition of a reinforcer:

A reinforcer is an event that, when it occurs in conjunction with a behavior, and contingent on that behavior, makes that behavior occur more often.

Let’s translate that into English and break it down into its component parts.

First component: Reinforcement makes behavior occur more often. 

(I’m going to try to use a dog example and a neuroplasticity example for each point to make this post maximally relevant.)

Example #1: When your dog sits, you give her a lick of peanut butter. Over time, your dog sits more often. This means that getting peanut butter after sits is reinforcing sitting in your dog.

Example #2: When I wanted to improve my memory and cognition, I asked my family and PCAs not to supply me with the word I was groping for when I would get stuck when I was talking. Instead, I asked them to wait quietly until I came up with the word on my own, and then to point out to me that I had come up with the word on my own and say something like, “Yay, Sharon, you did it!” Over time, I was able to speak with more fluency, with less groping around for words. This means that my behavior of persistence in finding the right words was reinforced by others giving me space to find them and then cheering for my success.

But what if it doesn’t work? What if the behavior occurs with the same frequency or less often than before the “reinforcer”? Then, it was not actually a reinforcer!

Example #1: Barnum hates peanut butter. (I know, it’s weird, but true.) If I put a smear of nut butter on my finger and hold it in front of his nose, he will make a face of revulsion and try to get away from it! So, for MOST dogs, a lick of peanut butter after sitting would reinforce sitting, and you’d get sits more often, but if I did that with Barnum, over time, he would sit less often. That would mean that getting a lick of peanut butter after sitting would punish sitting in his case.

Example #2: My PCAs and family said, “Yay, Sharon, you found the word!” With sincerity. They were honestly happy for me that I was recovering and that my cognitive function was improving. Their happiness and support of my hard work came through in their “Yay”s, so I found it reinforcing. But if one of them had not been sincere when she said this — if I thought she sounded sarcastic or grudging, as if she resented the time wasted while I worked to come up with the word — then it likely would not have been reinforcing of my word-finding efforts. I might have felt embarrassed or ashamed of my cognitive struggles and just been quiet around that person or given up on improving my word-retrieving ability around her. If that person’s response was punishing enough, I might even have generalized that bad feeling and stopped striving to find words around anyone.

Second component: Timing is crucial to reinforcement. The reinforcer occurs in conjunction with the behavior it is reinforcing. This means they either occur at the same time or the reinforcer occurs immediately after the behavior it’s reinforcing.

Example #1: Your dog is wild about balls. Every time you call your dog to you, at the moment when he is running his fastest to get to you, you throw a tennis ball in the opposite direction. Your dog, thrilled, speeds off to get it. Over time, your dog would run faster and faster to get to you, even though he is ending up running off in a different direction for the ball. Because the reinforcer (speeding ball) is being delivered in conjunction with “running really fast to get to my human after she calls me,” the ball throw is reinforcing running to you.

If the reinforcement does not occur in conjunction with the behavior, then what?

If you called your dog, and then immediately threw the ball to him before he had moved toward you, you would not be reinforcing running to you. You would be reinforcing standing still, or more probably you would be reinforcing standing still and looking wildly around for the ball. Sometimes people try to time reinforcements too soon, and then the intended reinforcer actually becomes a lure/bribe or a distraction!

On the other hand, if you timed the ball throw too late, such as once the dog had already gotten to you, you had praised him, and then released him, and he was trotting off to sniff something interesting, at that point you are reinforcing moving away from you or sniffing. Timing reinforcement too late is probably the most common mistake trainers make.

Example #2: After I started swimming again, I wanted to do flip turns when I swam freestyle in the YMCA pool.

I used to really enjoy flip turns when I was on swim team as a teenager. They were fun and gave me a sense of speed and mastery. It was fun to get to the other side of the pool and do a partial somersault in order to turn around. Therefore, they reinforced swimming fast and swimming freestyle.

Then, when I was getting sick in 1995, I started having a lot of symptoms when I was in the pool, including nausea and dizziness. These symptoms became the most severe when I did flip turns, which I found particularly frightening because I would lose track of which way was up, and which way was water or wall, and then bump into the wall with my head. It was largely because of these unpleasant flip turn experiences that I stopped swimming.

Thus, when I started my recovery, I had a mixed reinforcement history of flip turns: I had a longer history of flip turns being reinforcing of swimming freestyle for me, but I had a more recent experience of them punishing swimming to such an extent that it extinguished swimming behavior altogether!

I wanted to turn them back into reinforcers. I worked on this with many behavioral strategies just to be able to start to do them again – a story too long to go discuss here. But, after I was back in the swimming pool and starting to do flip turns, every time after my feet pushed off from the wall, I would say, in my head, “Wheeeee!” as I propelled through the bubbles of my own wake.

Saying “whee” in my head was an effective reinforcer because it reminded me that speeding through the water was fun, that I was going fast, and that I was speeding through the water in a fun way BECAUSE I had done a flip turn. It felt silly and enjoyable. (It also automatically made me relax my shoulders whenever I said “whee” after a turn.) Saying “whee” reinforced flip turns because I did it immediately after the flip turn and while I was still experiencing the direct result of the flip turn — speeding through the bubbles off the wall. In other words, I did it in conjunction with flip turns.

What if I said “whee” at a different time?

If I said “whee” as I was gearing up to turn, when I was feeling a little nervous about doing the flip turn, I would be reinforcing “gearing up to turn.” That might work to help propel me into the flip turn except that actually doing the flip turn was my reinforcement for gearing up, so “gearing up” was already being reinforced. It’s possible that if I’d said “whee” before the turn, I’d find it so reinforcing that I would start skipping the flip turn, but I doubt it. It probably either would have eased the transition into starting the flip or just felt irrelevant (and therefore neither reinforced nor punished the behavior of doing flip turns).

If I had said “whee” after I had finished coming out of the turn and then started my stroke again, it might have reinforced whatever I was doing at that moment (arm movements, turning head to breathe, or kicking), or it might not have reinforced anything because “whee” doesn’t feel congruent with the other activities of swimming, so it might have felt irrelevant and not altered my behavior.

Third component: The relationship between the behavior and the reinforcer is crucial. Reinforcement should be contingent on (be a direct result of) the behavior it is reinforcing.

Example #1: (Recycling the previous two dog examples….)

The dog sitting MAKES peanut butter appear. If she doesn’t sit (if she stands up or lies down, for example), no peanut butter. When she sits, she gets peanut butter. Peanut butter (reinforcer) is contingent on sitting (behavior).

For the other dog, running to the handler MAKES the ball get thrown for him. If he meanders to the handler or sits there looking at the handler instead of running over, no ball. The ball (reinforcer) is contingent on running to the handler (behavior).

Example #2: (Recycling the previous two Sharon examples….)

My searching and coming up with the right word LED TO my PCAs or family saying, “Yay, Sharon, you found the right word!” If I had given up, come up with the wrong word, or said, “Just tell me the damn word!” They would not have said, “Yay, Sharon!” I only got my reinforcer (“Yay, you found the word!”) because I did the target behavior (finding the word I wanted).

Likewise, I only say “whee” when I am swimming as I come off the wall in a flip turn.  If I don’t do a flip turn, I don’t say, “Whee!” in my head. And I don’t tell myself, “Whee!” if I haven’t done a flip turn.”Whee!” (reinforcer) is contingent on flip turning (behavior).

Now let’s see how this compares with the definition for reward*….

Definition of reward:

1. Something given or received in recompense for worthy behavior or in retribution for evil acts.
2. Money offered or given for some special service, such as the return of a lost article or the capture of a criminal.
3. A satisfying return or result; profit.

The relationship here between the behavior and the result are a lot looser! For example, “Something given or received in recompense for worthy behavior,” would fit what my parents did after each semester: take me out for ice cream as a reward for getting a good report card. I think this is a pretty typical way that people reward others. How is this different from the reinforcers I described previously?

For one thing, the ice cream came WAY after the behavior it was intended to reward. I had already done all my homework and taken all my tests for the semester before I got that “reward.” In fact, often the new semester had already started by the time the report cards went home and the evening out happened. The ice cream did not occur in conjunction with the studying and test-taking and homework-doing. There was no temporal relationship between the studying and the ice cream.

Secondly, getting ice cream at Friendly’s twice a year did not actually affect my studying behavior, therefore it didn’t act as a reinforcer. I studied because I cared about getting good grades and about achieving. The test or research paper handed back with an “A” on it or the teacher’s smile when I answered a question right was the reinforcement for the behavior of studying for tests or writing papers or participating in class. If my parents had never taken me out for ice cream, I still would have worked hard and gotten good grades.

Third, the ice cream was not actually contingent on my performance. My parents ALWAYS took me for ice cream at some point after I brought home a report card. They did that whether I had all “A”s or whether I had “B”s mixed in there, too. (Or, when I was younger, when I had a mix of “satisfactory,” “unsatisfactory,” “excellent,” “needs improvement,” or “improvement shown.”)

I am not saying there is anything wrong with rewards like this! I really enjoyed those evenings out with my parents. It felt good to have my efforts recognized. We had a good time hanging out and eating our ice cream. It was kind of a feel-good/bonding ritual.

I think this is often how and why we reward our dogs, too: We give the dog a biscuit for being cute. We invite her up on the bed just because we want to be close and have a cuddle. We throw him the ball because we want to play together. There’s nothing wrong with any of this. In fact, it’s some of the stuff that makes life with dogs feel good! But, we should not confuse it with training or with shaping our dogs’ behavior.

Likewise, as I wrote in a previous post, it was very exciting for me to go to a shoe store to get new shoes after I started walking again. I was thrilled to be there, and it felt rewarding in that I had not been able to be in a shoe store in almost two decades and now my hard work was helping to make this happen. But it was not tied to any specific behavior in time or contingency. I did not increase the amount I was walking in order to make new shoes happen. And having new shoes didn’t make me do more rehabilitation work. It was an enjoyable, celebratory event and a benchmark for me, but it was not really a reinforcer for my recovery work.

Also, rewards come with judgment or intention from a person (either yourself or someone else) to you — YOU are being rewarded. Reinforcers, on the other hand, reinforce the BEHAVIOR, not the learner, can come from anywhere, anything, or anyone, and do not necessarily carry a message.

Rewards carry judgment: You did something worthy, so you are receiving a gift. The judgment is that you did something good, so you deserve something good in return. Or, the reward (as in “just rewards”) can be “retaliation” for “evil” behavior. But in either case, there is a giver, and they are acting with judgment and intention to tell you, “You done good.”

Reinforcers can certainly come from other people. In all my examples in this post, the reinforcers were delivered by the dogs’ handlers or by me to myself with the intention of modifying behavior. But reinforcers can come from anywhere and don’t carry any moral weight. In fact, the environment is a common reinforcer.

For example, suppose you are trying to make a habit of meditating first thing in the morning. It’s a struggle — it’s still dark out, you’re tired, you’re groggy, you’re not sure this is worth it. But, the first day, in late summer, you wake up at 5:30 AM, set your timer for 30 minutes, and shut your eyes and meditate. When your timer goes off, you open your eyes and turn and see a beautiful sunrise out your window. The sky is filled with streaks of pink. The birds are singing. You feel calm and happy.

The next day, you are again not sure if this meditating business is all it’s cracked up to be, but you are looking forward to opening your eyes at the end of the meditation and seeing the sunrise. You position yourself so that you will be looking out the window when you open your eyes. After the 30 minutes, you are delighted to see the sunrise again. You start moving your meditation time a little bit later every day so that, as the days shorten and the sun rises later in the day, you will still end your meditation by looking at sunrise.

The sunrise is not “rewarding” you. Nobody is saying, “That person deserves a sunrise for meditating.” It was just coincidence that the sunrise was coinciding with the end of your meditation time when you started, BUT as a person who is savvy about reinforcement, you recognized the sunrise’s reinforcement value for your meditation practice, so you manipulated that variable by moving yourself in front of the window and changing your meditation times.

With dogs, too, reinforcement can come from anywhere. Suppose your dog slips out the door first thing in the morning one day before you have made it to the hens to collect the eggs. The dog, however, does a terrific job of “collecting” the eggs into her stomach. She decides to do the same thing the next day. Eggs have now reinforced escaping in the mornings. The hens didn’t intend this! The dog didn’t know she’d find eggs the first time. It just happened. And the more it continues to happen, the more escaping in the morning will be reinforced by eating eggs.

Another example is barking. Many dogs find the act of barking reinforcing. It’s not that they think, “Barking is good!” Or, “Barking is bad!” Or, “I’m going to reward myself with barking!” They often bark because they’re bored and it gives them something to do, or maybe for no reason other than they got on a roll and now it’s a habit. In a lot of dogs, it seems to be a cycle of anxiety — they bark because they’re anxious, and then more barking becomes both an outlet for the anxiety and a perpetuator of anxiety. Barking reinforces barking because barking seems to be one of those behaviors that is “self-reinforcing.”

Indeed, reinforcers don’t have to be enjoyable!

To support clarity, I have so far kept my examples and explanations of “reinforcement” pretty limited. I have focused on positive reinforcements and primary reinforcers.** But negative reinforcement is also reinforcement. In fact, I think negative reinforcement played a big role in my recovery.

Positive reinforcement means adding something that the learner will work to get (something desirable) as a consequence of behavior which makes that behavior more frequent. The examples in this post — peanut butter, tennis ball, “Whee,” and “Yay” are all positive reinforcers.

Negative reinforcement means removing something aversive (something unpleasant) that the learner will work to avoid as a consequence of a behavior to make that behavior more frequent. The buzzer in your car that sounds until seatbelts are fastened is a negative reinforcer; when the behavior of seat belting is completed, you are reinforced by the absence of that annoying buzz. (Alarm clocks and timers work the same way.)

How this all relates to DNRS and the Limbic Retraining Steps

At the beginning of this post, I mentioned someone saying that she found doing the Limbic Retraining Steps pretty easy because it was rewarding in itself. I’m pretty sure that Annie Hopper, who created DNRS, designed LRS to be reinforcing of doing LRS because the two longest steps, near the end of the behavior, involve immersing yourself in a happy memory and a happy visualization. (That’s not the only reason they’re there, but it’s an important one.) In this case, then, the PROCESS of doing LRS, itself, carries a reinforcer. If you feel good at the end of it, that’s reinforcing. That’s an example of positive reinforcement.

But there’s another potential hidden reinforcer in LRS. The training involves using something mild to challenge oneself (a low-level trigger) at the beginning of the steps. If you have MCS, as I did, you use a scent, for instance. For me, this meant usually when I started my rounds of LRS, I was having unpleasant symptoms as a result of the trigger/challenge item. Because I had symptoms all the time, sometimes I did not use a trigger like fragrance or foods to challenge myself, but would just take a moment to notice unpleasant sensations in my body, making me more aware of the symptoms that were hovering in the background.

However, often (but not always), by the end of the session, the symptoms had lifted to some degree, and then I felt relieved by feeling better. This was a very potent negative reinforcer!

This means that there can be an element of negative reinforcement in the training program: We start out feeling bad, and then doing LRS removes the unpleasant stimulus (headaches or anxiety or whatever), and the relief from that aversive can be VERY reinforcing!

This was most effective when I did not intentionally trigger my symptoms, but something would happen that would make symptoms worse: If I was in the car, and another car drove by that had diesel fumes; or I picked up a piece of mail that had a fragrance to it; or I woke up in the morning and felt lousy (as was usually the case in the past). THEN, when I did LRS, if I felt better at all, that was very reinforcing. I hadn’t done anything to make myself feel worse; the environment (internal or external) had set up the training situation for me to reinforce doing LRS to feel better. In fact, control of one’s environment is a primary reinforcer — something we all want from birth, like food or air or affection.

Also note that even if sometimes you feel better after doing LRS, and other times you don’t, the behavior is still getting reinforced. This means you are on an intermittent or variable reinforcement schedule, which is actually a really potent reinforcement schedule. You keep working at it in the hope that this time will pay off. (This is why gambling is so addictive.)

What this also means, though, is that the process of doing LRS carries an aversive. The tricky part with any behavioral modification program that employs negative reinforcement is that, until the aversive is lifted, and we have the relief of not experiencing the unpleasantness, whatever was happening up till that moment was being punished! So, having limbic system reactivity to the trigger that results in unpleasant symptoms means we are punishing that reaction — we are punishing our brains sending chemicals through our body that cause symptoms, which is a fine thing to punish. But, we might also experientially connect the punishment to starting our LRS training.

Punishment is not necessarily a bad thing in every case. Punishment suppresses behavior, and that can be extremely important in a behavioral modification program like DNRS that is designed for learners to stop using one neuronal pathway and build and use another instead. And I really don’t think Annie Hopper intends for the program to be punishing — quite the opposite! She goes to great lengths to stimulate and support improved mood and other very enjoyable states. I think that’s very successful for most learners most of the time.

But, some participants might experience the beginning of LRS as punishment, and the problem with punishment is that there is always fallout. Fallout in this context means undesirable side effects from the use of aversives. Fallout includes: associating anything present during punishment with punishment and a desire to escape or avoid the punishing situation.

It might be obvious to you that there is an element of punishment if we do something intentional to trigger mild symptoms, but there can also be an element of punishment even if we are using existing symptoms. If you typically use distraction or avoidance to cope with symptoms, then when you trigger symptoms intentionally, or even if you just let yourself connect with and be aware of symptoms that were already present, that might feel like a punisher to you.

How might one avoid the unpleasantness associated with the first parts of LRS? Procrastinating starting LRS in the first place! For most people, the greatest challenge in sticking to the DNRS program is getting themselves to start doing LRS, whereas once they get going, they roll right along and feel better than (or at least as good as) before they started.

So, if you or someone you’re working with is having trouble sticking with a training program (whether you are training your dog, your child, or your own brain), please know the following:

  • This is normal! It does not mean you are bad, wrong, aberrant, or weak-willed. You are affected by the laws of behavior, just like anyone, and this is actually good news because….
  • It might be because there is an aversive in there that is too harsh at its present intensity for you or your learner to withstand, and you might need to dial it down. This is something you very likely have control over! So, this is something that is possible to adjust to work better for you or your learner, to make the program more likely for you to succeed.
  • It might also be that you need more reinforcement to stick with the program. This is something that can be dialed UP. This is also something that is possible to adjust — that you have a say in — to work better for you and help you succeed.

These are also the kinds of things I love to work on with people when I do coaching. If you’re interested, contact me to set up a session. Or, you may find that, armed with this additional information, you are able to figure out some tweaks on your own!

Happy training!

Peace,

Sharon

P.S. Did you enjoy this post? Would you like to reinforce my behavior? Tell me what made it juicy for you in the comments — if you’re a “dog person” or a “brain person” and what spoke to you! Or make use of the Tip Jar in the sidebar; money is a very potent conditioned reinforcer! (I’ll be talking about why money is such a powerful conditioned reinforcer in a future post.)

*Much to my surprise, I have discovered some dictionary definitions of reward now refer to reinforcement. Such as this one, which is from the same dictionary as the definitions above:

Psychology The return for performance of a desired behavior; positive reinforcement.”

But I still think what most people think of when they hear “reward” is what I describe above.

**I plan to discuss conditioned reinforcers, Premack’s Principle, and punishment more thoroughly in other posts.

Upcoming Posts (with extremely fuzzy timeline):

  • The Laws of Behavioral Science Are In Effect All the Time (whether you know what they are or not)
  • Why you procrastinate: Long duration behaviors and delayed starts
  • Punishment: What it is, what it isn’t, how it works to stop behavior (whether you want it to or not)
  • Premack’s Principle, or how to use your addiction to retrain your brain
  • Conditioned Reinforcers, or how brain retraining is like money in the bank
  • Reinforcers vs. Rewards, Part II: Why feedback is better than praise
  • Clicker Train your Brain: Why clicker training and limbic system retraining are a perfect match

 

My Life as Wonder Woman; Power Postures Tell You How to Feel (and Lower Cortisol)

Now that I’ve gone public with my recovery, in addition to doing posts that answer the questions I’ve been asked the most, I’m really interested in exploring how behavior changes our internal states — physical and emotional – and how this is mediated by the brain. I’m excited about the ways behaviorism and neuroplasticity therapy support each other. They are so intertwined, but I don’t read a lot that is explicitly about the hows and whys of the connections between these areas of science. Since I’m excited by both fields and trying to learn as much as I can about both, I’d like to blog about their intersections.

On the way home last night from a “safe animal handling” class at the animal shelter for which I’m volunteering (how cool is that that I’m volunteering for an animal shelter?!), I was listening to NPR as I drove. (I love listening to NPR when I drive! It’s one of the many joys of not being sound- and motion-hypersensitive anymore, and being able to drive!) Most of the class was on understanding the body language of dogs and cats. I was pleased to discover that all these years of paying attention to dog body language has taught me that I really can tell a lot about what’s going on with a dog by looking at it! And while I’m not as good at it with cats, I’m reasonably good at it and on my way to getting better.

On the other hand, one of the things my recovery has brought to light is how uncomfortable I feel around other human beings I don’t know well. After having spent most of the last eighteen years by myself or only with my parents, intimate partners or close friends, and personal care assistants, I am really unused to being in social situations with other people.

The exception to this is being on the phone or online. I’ve always enjoyed long phone conversations, and after I got sick, I spent countless hours talking on the phone. In fact, when I studied Nonviolent Communication (NVC), it was all in phone groups and classes, which I guess is pretty unusual for healthy people, but was the norm for my friends who were also homebound. I think I have gotten good at guessing what is going on for people by their voices, and even by their silences.

I am also very comfortable with online — written — communication. That has been true for me since I learned how to write an essay, in ninth grade. When I learned the formal rules for writing, I found them logical and easy, and from then on I decided I expressed myself best in writing and tried to do most of my challenging communication by letters and notes. Now, with the ubiquity of email, it is socially acceptable to do most of your communication with writing, too, which is a bonus. I like that writing allows me time to pick my words and edit. In face-to-face interactions, there is no lag time, and other people seem to “read” my thoughts and feelings much more easily than I read theirs, which often leaves me feeling wrong-footed, confused, and worried.

That’s my next point — I am not as good at reading human body language as I would like to be! I hadn’t given this any thought till I was at the book signing event at Clicker Expo, and the person I was standing next to commented on how you could tell which faculty members were really into signing their books and schmoozing, and which would rather be elsewhere. I had not noticed any of this. I was amazed by her observation and said, trying to make a joke, “You’re really good at reading HUMAN body language!”

She looked at me weirdly, so I guess she didn’t think it was funny. The combination of her reaction and my dawning awareness that this is an area in which I am not as fluent as I’d like to be led me to wish there was a way I could practice interacting and communicating with other humans in a learning-oriented, nonjudgmental environment. I have said to my friends, “I am like that undersocialized dog who is good with the family, but gets overwhelmed when he’s out in the world. I need a puppy kindergarten class for myself!”

I have not yet found this. The irony is that this is how most people learn NVC — and I’ve heard NVC enthusiasts complain how hard it is to do on the phone! — but I have always done NVC by phone and email.

Anyway, I decided that reading human body language must be just as much of a skill that requires practice and study as reading dog (or cat or horse) body language, so I have been trying to pay more attention to what people communicate nonverbally as a way to try to help me take my focus off my anxiety at what’s happening interpersonally when I’m around other people in meatspace.

Indeed, the whole Expo experience actually made me painfully aware of how lonely and isolated I feel around other humans with whom I’m not intimate. It reminded me of how I felt in kindergarten, elementary school, junior high, high school, college, and after. I have never really known how to socialize, and this is hard because I am actually an extrovert! I love people. I find them fascinating. I love connecting. All of my passions in life — teaching, training, writing, NVC — are about connection. Yet, when I am with people, I find it so hard to connect. This has given me so much empathy for reactive animals because I am one, too!

For example, I recently saw a cat solicit his person’s attention — meowing and circling — and jump onto their lap. He wanted to be petted. As his person petted him, his tail started to twitch and then to thrash, but he kept lying in the person’s lap, purring. Finally, he pinned back his ears, growled, and hissed. He had reached his threshold of petting by a long shot, but he continued to lie in the person’s lap!

This is pretty common for cats; they want petting, but then they can’t tolerate it after a certain point. I used to cat-sit occasionally for a cat who did this. I’d be petting her, she’d be purring, and then she’d bite me!

Still, when I saw this happen recently, I thought, “Kitty, wouldn’t it have been better if you had realized, ‘I am done with this,’ and jumped off the person’s lap?”

But he probably doesn’t realize that’s a possibility because this is the behavior he knows and has practiced. Still, watching this cat go from approach to approach/avoidance conflict, I thought, “Yeah, I feel like that, too, kitty.”

I am comfortable with people if I have some sort of defined role — speaker, teacher, actor — but if it’s just a nebulous social situation, I think, “What am I supposed to do? Is it socially acceptable to ask or say such-and-such? How do I break into this conversation? How do I leave this conversation? How do I not stand around not talking to anyone and wishing I was?”

When I am actually IN a conversation, I can use NVC — listening intently, making empathy guesses, making requests — but there are so many nuances before and after the interactions where I have no clear idea of what to do. Just writing about this, I feel terribly anxious and can feel the cortisol rushing through my body. But since I’ve been dealing with this my whole life, I have learned how to fake it. Most people don’t know I’m faking it (can’t tell I’m anxious and uncertain) because, you know, if you fake something long enough, you get pretty good at it!

Which is exactly what this NPR segment was about — human body language, faking it, and recovery from brain injury! If I believed in God, I would use the fact that this radio program was playing as I drove home as proof of Her existence.

The NPR program was a TED Radio Hour, and it featured TED talks on language (another one of my favorite topics). It’s called Spoken and Unspoken. The last segment was so damn relevant to people who are doing neuroplastic recovery that I rushed to the computer to write this post for you, dear readers!

Amy Cuddy is a professor of social psychology at Harvard Business School. One of her areas of study is prejudice, so she naturally has taken an interest in the expressions of power and dominance in nonverbal language. (Listen to the NPR story or watch Amy Cuddy’s TED talk, or read the transcript of TED Radio Hour.)

She got frustrated, teaching at Harvard Business School, by how male students would take up most of the discussion time and space, and women were not taking that space — literally. She looked at their body language — with men very comfortably taking up space and women curled in on themselves, trying to take up as little space as possible — and how that could change the dynamics. And since class participation is half their grade, the female students were seriously harming their chance of success in school.

What Professor Cuddy discovered is that if people spend TWO MINUTES in a “power pose,” even if they are in a small room by themselves, it changes how they feel. When you put your body in a power pose, your body tells your brain that you are more powerful. It changes the hormone levels in their bodies! It raises your testosterone level and lowers your cortisol level.

Well, those of us who have been doing DNRS are very desirous of lowering the cortisol levels in our bodies! Cortisol is produced by the pituitary gland but released by the hypothalamus as part of the fight/flight response. In popular media, cortisol is often referred to simply as “the stress hormone.”

For years, people with CFIDS (chronic fatigue immune dysfunction syndrome, also known as CFS/chronic fatigue syndrome or ME/myalgic encephalopathy) have been told that we have abnormalities in our HPA (hypothalamus-pituitary-adrenal) axis. We are often told we have “adrenal fatigue” or “adrenal burnout.” Often we have abnormally low levels of cortisol, but supplementation makes our symptoms worse!

Strategies to reduce the release of cortisol in my body or to stimulate the release of other hormones that counteract the effects of cortisol has been a big part of my recovery strategy. Most of these strategies are behavioral: yoga, swimming, deep breaths and sighs, running my fingers over my lips, and yawning are some examples. Many of these are simple behaviors that stimulate the parasympathetic nervous system (PNS), which has a calming/inhibitory effect on the stress response.

Here’s how Harvard Mental Health newsletter explains it in “Understanding the Stress Response“:

The sympathetic nervous system functions like a gas pedal in a car. It triggers the fight-or-flight response, providing the body with a burst of energy so that it can respond to perceived dangers. The parasympathetic nervous system acts like a brake. It promotes the “rest and digest” response that calms the body down after the danger has passed.

Now it seems I have stumbled upon another intriguing strategy to lower cortisol: Power postures! (By the way, you can read more about this study and see pictures of the various high-power and low-power poses at this blog.)

What are the “power postures” that lower our cortisol and raise testosterone, giving us a sense of power, confidence, and calm? The first of the three power poses Cuddy discussed is “Wonder Woman” (though she noted that Superman uses the same pose) which is when you stand with your feet apart, your chest out, hands on hips.

Linda Carter has long, dark wavy hair, a red bustier with gold breast plates, blue shorts with white stars on them, and silver bracelets and tiara, holding her golden lasso. She is standing with hands on hips, confident and smiling.

Linda Carter as the 1970s-era Wonder Woman demonstrates a power pose!

The second pose is the “CEO” pose. It is sitting with feet up on the desk, chest out, hands behind head with elbows out.

Woman with legs up on desk, leaning back, hands behind head, elbows out.

I used to have a boss who sat this way all the time.

And one that she called “Starfish” or “Victory” on the radio show, but in her TED talk says it’s called “Pride,” though other articles call it “Triumph.” This last pose is universal and is struck by people all over the world who have just achieved a physical or athletic victory — including people who are congenitally blind and have therefore never seen anyone else strike this pose. It is a wide stance with arms spread wide, up in the air above the head, in a “V.” (This article does a great job of breaking down her TED talk into its most important components, illustrated with photos.)

Jamaican runner Usain Bolt, wearing a yellow shirt and green shorts, on an Olympic track ahead of other runners. He has his arms out wide above him, fingers spread, head up, and legs are still in mid-stride.

This image of Usain Bolt from the 2008 Olympics is used to illustrate “Pride” in a lot of the “power pose” articles online.

Huh, where have I see this pose before?

Sharon stands in brown water up to her knees, arms spread out high above her, head back, looking up and smiling.

Me in August 2013, first time swimming after beginning DNRS.

Sharon in water up to her chest, hair wet, emerging from the water with arms wide above her head.

Me in August 2013, swimming for the third time.

Sharon on a yoga mat with her right leg bent, right foot against her left calf, arms in the air above her head, looking up.

Me in September, working on Tree Pose, which just also happens to be the Pride Pose, according to social psychologists!

Sharon, wearing a riding helmet, with her fists in the air and a wide stance next to an auburn horse and a woman with her back to the camera in baseball cap and knee-high boots holding the horse.

Me in October. This was actually ironic and slightly self-mocking; I had just fallen onto my knees when I lost balance sliding off the horse. But I was also celebrating that I’d been on the horse in the first place.

Sharon and Betsy stand in front of a freshly painted purple house. Betsy is looking at Sharon who is jumping in the air, her arms above her head, her legs wide, her mouth open (apparently yelling).

October: It’s not enough to just STAND in that pose, I actually have to JUMP in the air to get even taller and more celebratory (and because I can)!

Sharon stands in the Victory pose in front of a snow-covered ground and tall grasses, with the snow-covered pond and pine trees behind that. She's wearing maroon sweatpants and fleece and hat, black boots. Her head is thrown back, and she is smiling.

Me in December, on my first winter walk around the pond.

Sharon has one leg slightly raised while she stands on a bridge that is about six boards wide, covered in a thin layer of snow over a small stream. There are tree trunks on the bank on either side behind her and the forest behind that.

On the same walk, showing off my balance on a bridge

Sharon stands in the Victory pose on the frozen, lightly snow covered pond. In the distance behind is a shoreline of pine trees. The sky is vast above, slightly pink with sunset and full of clouds.

February, my first walk on the frozen pond.

Sharon in shadow at sunset on a balcony with a view of a harbor behind her, with many boats. She has her arms in the V.

In March, on the balcony at my hotel room in Norfolk, Virginia, for Clicker Expo — the realization of a dream of many years.

Sharon in a black bathing suit with white trim stands in the ocean surf up to her waist with her arms in the air.

April, another dream realized — being in the ocean in Florida.

WHY was I standing in this pose so much after I started recovering my health? Was it simply instinct, or was something else going on?

As I explained in my previous post, some of it was instinct. This felt like a pose of FREEDOM, and well, victory! I often did this the first time I did something big, a celebration and victory, a conquering: the first time I swam, the first time I swam MORE, the first time I walked the dog in winter, the first time I walked on the ice, the first time I rode a horse, the first time I was in the ocean.

But I think one of the main reasons I struck this pose so often was that I’d PRACTICED it…

Part of the DNRS program is to choose a proclamation that says where you want to be, what your overall goal is. You say it every time you do the limbic retraining steps, and the instructions are to stand in a way that you feel embodies your proclamation. My proclamation was, “I can go anywhere and do anything!” And I stood in the victory stance when I said it. So, I practiced standing this way hundreds of times, starting in August.

This is one of the basic principles of behaviorism — the more you practice doing something, the more you do it! This is one of the reasons that DNRS, and then other neuroplastic techniques, made so much sense to me: they were about choosing behaviors that would affect my internal state and would eventually become embodied. This is what I have been studying and practicing for over 15 years!

Even though behaviorism follows natural laws — it is something that affects all beings, whether we understand it or not — most people don’t think this way. We seem much more inclined to want to change our feelings in order to change our behavior. That can work, too, but I think changing behavior first is usually more efficient.

Here’s what Amy Cuddy says about it in her TED talk:

When I tell people about this, that our bodies change our minds and our minds can change our behavior and our behavior can change our outcomes, they say to me I don’t – it feels fake. Right. So I said, fake it till you make it.

Like, I don’t – it’s not me. I don’t want to get there only to feel like I’m not supposed to be here.

And that really resonated with me because I want to tell you a little story about being an imposter and feeling like I’m not supposed to be here. When I was 19, I was in a really bad car accident…. I woke up in a head injury rehab ward…. I learned that my IQ had dropped by two standard deviations, which was very traumatic. I knew my IQ because I had identified with being smart, and I had been called gifted as a child. So I’m taken out of college. I keep trying to go back. They say you’re not going to finish college….

…Having your identity taken from you – your core identity, and for me, it was being smart – having that taken from you, there’s nothing that leaves you feeling more powerless than that…. I got lucky and worked and got lucky and worked. Eventually I graduated from college. It took me four years longer than my peers.

And I convinced someone – my angel advisor, Susan Fiske, to take me on. And so I ended up at Princeton. And I was like, I am not supposed to be here, I am an imposter. And the night before my first-year talk – and the first-year talk at Princeton is a 20-minute talk to 20 people, that’s it. I was so afraid of being found out the next day that I called her and said I’m quitting. She was like, you are not quitting because I took a gamble on you and you’re staying. You’re going to stay and this is what you’re going to do – you are going to fake it. You’re just going to do it and do it and do it even if you’re terrified and just paralyzed and having an out-of-body experience, until you have this moment where you say, oh, my gosh, I’m doing it – like, I have become this. I am actually doing this. So that’s what I did. Five years in grad school. A few years, you know, I’m at Northwestern. I moved to Harvard….

So the end of my first year at Harvard, a student who had not talked in class the entire semester who I had said, look, you’ve got to participate or else you’re going to fail, came into my office. I really didn’t know her at all. And she said – she came in totally defeated and she said, I’m not supposed to be here. And that was the moment for me because two things happened. One was that I realized, oh, my gosh, I don’t feel like that anymore…but she does and I get that feeling. And the second was: she is supposed to be here, like, she can fake it. She can become it.

So I was like, yes, you are. You are supposed to be here. And tomorrow you are going to fake it. You’re going to make yourself powerful. And you’re going to go into the classroom and you are going to give the best comment ever…. And she gave the best comment ever. And people turned around and they were like, oh, my God, I didn’t even notice her sitting there, you know.

Tiny tweaks can lead to big changes. So this is two minutes. Two minutes. Two minutes. Two minutes. Before you go into the next stressful evaluative situation, configure your brain to cope the best in that situation. Get your testosterone up. Get your cortisol down. And also, I’m going to ask you to share this science because the people who can use it the most are the ones with no resources and no status and no power. Give it to them because they can do it in private. They need their bodies, privacy and two minutes, and it can significantly change the outcomes of their life. Thank you.

I got tears in my eyes listening to this on the radio last night, and I have tears in my eyes rereading it now because I feel like this is my story, too. My brain was injured, too, and I lost my smarts, too. I’ve felt like an imposter so many times. Indeed, there were a lot of people who didn’t think I could get where I have gotten today, but the biggest skeptic was me.

I didn’t think I was going to recover. I didn’t really believe it was possible, but I decided to just do it. Just fake it. Just smile and laugh when I felt awful. Just pretend that I wasn’t in pain, that I wasn’t exhausted, that I wasn’t overwhelmed, that I could see a healthy future. Much of DNRS is pretending, putting your body and mind again and again in the power postures of health and wellbeing, teaching your body and brain to be healthy. Because our brains don’t know the difference between thoughts, memories, fantasies, and reality, so I fooled my brain into thinking I was health before I was. Because if you practice something enough, you get good at it!

So, here, finally is a tool that I can use to feel comfortable in social situations. This is my new behavioral plan for socializing myself:

1. Before I am going to be around people and need to interact with them in some meaningful way — not just swimming in my own lane at the YMCA — I will do two minutes of power poses by myself at home.

2. When I am around people, I will be conscious of my body language and make an effort to make my postures bigger — more confident, less curled up into a little ball of uncertainty.

3. I will make myself smile.

I feel so much better now that I have a plan. A plan that is based in science. A plan that makes sense to me. A plan I feel confident in because I have already done something like this before.

Plus, I get to pretend to be Wonder Woman every day! Did I say pretend? No, I get to BE Wonder Woman.

Big Changes Taking Place!

Howdy!

You might have noticed that I have not blogged for several months. This is because really big changes have been taking place in my life, and I was focused on making those changes happen. Also, it’s been a (relatively) private journey. I do plan to share about my journey (I’m writing a memoir), but I am not yet ready to post about what’s been happening. I think I will “go public” here by May.

Meanwhile, I’ll be doing some updates and yes, changes (I’m using that word a lot!), on the blog in the next couple of months. The current incarnations of my various blogs no longer reflect my reality.

Feel free to let your imagination run wild. If your speculation leads to something that seems too amazing to be true, you are probably right on the money.

Here is an example of the awesomeness of my life these days: a week from today I am going to Clicker Expo! This is a dream come true for me. I am leaving Barnum at home because I decided that would be less stressful for both of us. I’ll share more another day.

The Importance of Play

It’s Assistance Dog Blog Carnival Time. Brooke at Ruled by Paws is hosting and chose the theme of “lessons.” What lessons have we learned from our partnerships?

Assistance Dog Blog Carnival graphic. A square graphic, with a lavender background. A leggy purple dog of unidentifiable breed, with floppy ears and a curly tail, in silhouette, is in the center. Words are in dark blue, a font that looks like it's dancing a bit.

Lessons

I thought of play.

One of the points that really struck me when I read The Other End of the Leash by Patricia McConnell is how dogs and humans are both unusual in engaging in play a lot as adults. In most species, the young play, but the adults mostly do not.

But play is one of the things we like best about our dogs. I recently had dinner with my family and brought Barnum. I brought along his favorite squeaky ball. When I thought he might be getting bored — he was not on duty — I gave him the ball. He squeaked it continually and shrilly, jumping around with it, running with it, lying on his mat with it.

I was concerned that it might be getting on people’s nerves, but everyone had big smiles. My niece and sisters-in-law both tried to play with him — throwing the slobbery ball for him, playing “I’m gonna get you,” etc. Everyone thought he was adorable. The more playful he was, the more people smiled.

I think most people don’t think of play when they think of assistance dogs because in public, they are usually working. Play is often something we do when it’s just the two of us. This can make play a wonderful time of bonding and togetherness.

It’s also an essential way for both partners to release tension from working and focusing. I just read a great article about decision fatigue, which affects humans and dogs (which makes sense, since we have pretty much the same brains, but it’s also been tested in both species).

Afterward, I was thinking about how many assistance dog tasks involve decisions. Dogs that alert or signal their owners are making decisions about whether or when to alert and sometimes about how to alert. Guide dogs make decisions constantly as a major part of their job — is this situation safe? Do I obey or do I say no?

Service dogs that do things you might not think of as involving decisions — such as picking up a dropped item — sometimes do. If the item is difficult to pick up because of its size or shape or where it landed or if it needs gentle handling, I have seen my service dogs assess the situation and choose an approach, or partway through, change their minds about their first approach and try another. Play — a time when the rules are relaxed and the point is just to have fun — is a break from all that thinking and focusing and deciding.

Play is also a terrific time to train certain behaviors. (You knew I’d bring it around to training, didn’t you?) Teaching or testing impulse control is often best achieved during play, when arousal is high and the rules are relaxed: Can the dog still let go of the toy on cue? The first cue? Can he remember to be gentle and keep his teeth off skin and clothes? Will he stop play to attend to a job when requested or called?

Likewise, training is most successful when it’s approached as a game. It’s a different kind of game than what we usually think of as play — tug or fetch or chase. Clicker training is a lot like a puzzle or card game where there’s a lot of strategy, and the thrill is in putting together the clues or building on a previous round’s success to get to the win.

Whenever training fell apart for me (and therefore, with the dog), it was when I got too serious about it, when I forgot that for the dog, it’s all just a game. Inevitably, the behaviors that I trained the most as a thrilling game became the strongest skills. The ones I had the most tension about often end up the most brittle.

This is a lesson I have carried into many parts of my life. Life is to be enjoyed. We never know what will come next, so we may as well have fun. My partnerships with my dogs have kept me laughing and thinking, have kept me playing. Some of my favorite memories of my dogs are just of times when we were goofing off. A year ago, when we participated in the Horowitz Dog Cognition study on human-dog play, we submitted this one-minute video of us playing. It’s completely unremarkable — a dog and person playing fetch and tug. But it still makes me smile.

Video description: Barnum, a shaved black brindle Bouvier des Flandres, has a big black plush spider with yellow eyes and legs made of seatbelt straps. It makes a squeaking sound like a duck quacking. He chews and squeaks the spider on a tan dog bed, then Sharon takes it and they play tug, with Sharon pretending to lose her grip on the spider periodically. Sharon sometime says, “Give,” and Barnum drops the spider and Sharon throws it. Barnum races enthusiastically after it, grabs it, and brings it back to his mat for more chewing and play.

P.S. If you want to learn more about dogs and play, there’s a roundup of four scientific studies on play in this article from The Bark.

It’s Assistance Dog Blog Carnival Time Again!

Howdy!

I know I haven’t posted for quite a long time, and some of you have been concerned that something might be wrong with me or Barnum. But, I am happy to report that Barnum and I are both fine. In fact, I am super busy with something exciting that I’m very happy about. Soooo busy that I have no time to post here! I am not yet ready to go public with my news, but when I am, I will fill you in!

Meanwhile, it’s Assistance Dog Blog Carnival time again! (We actually skipped the summer edition — the first time we’ve ever missed one — because I had so much else going on.) But Brooke of Ruled by Paws is on the ball (probably a tennis ball with a squeaker in it), and she has posted the October ADBC topic, submission guidelines, and call for entries! So, please trot on over to her call for submissions to read all the juicy details.

And if you have something to say on the topic, “Lessons,” as it pertains to assistance dogs (I think that’s a great topic! Lots of fun stuff to cover — good one, Brooke!) please write a post. If you’re a reader and not a writer, be sure to keep your eye on Ruled by Paws or here to find out what the Carnival is up.

-Sharon and Mr. Barnum

How I Ended up on BBC Radio Today Talking about Grieving My Service Dog

Sometimes life is weird.

You know how when you’re listening to a BBC radio program — a program that mixes music and disability and being gay in the 1980s — and really enjoying yourself? And then you hear your own halting, nasal voice coming out of the speakers, and you become terribly self-conscious? But then you forget yourself, as you are transported back in time and realize anew how much you lost when your best service dog died?

Today was just like that. I know it’s kind of cliché, but it’s true.

The whole thing started back in early May when Maggie Ayre, the host and producer of the BBC Radio 4 program, “Soul Music,” emailed me to ask if she could interview me about a song I once blogged about.

Discussing music is not exactly my forte. In fact, the only time I ever blogged about music, I wrote, “I don’t listen to music.”

So why did I say yes to Maggie? Partly because I love the BBC. I love BBC TV, and I love public radio in general. The idea of contributing in any way to these institutions was exciting.

Another reason was that it would give me a chance to talk about Gadget a bit with the rest of the world. I always like to imagine more people learning who Gadget was and how special he was. (If you haven’t yet “met” Gadget, here is a video of the two of us.)

The song Maggie was collecting stories about is “Don’t Leave Me This Way,” originally written and recorded by Harold Melvin & the Blue Notes, sung by Teddy Pendergrass. However, I only ever knew it as the smash hit by The Communards that I danced to in college, after I came out, as one of many songs with a gay sensibility by gay musicians that became gay anthems in the late 80s. (It was a very gay time for me, in both senses of the word.)

And then it took on a different meaning for me after Gadget died, which I wrote about on After Gadget. That is mostly what I talked about with Maggie.

It was a major team effort to get my interview on the air. The first time Maggie called to speak with me about what the song means to me, my spasmodic dysphonia was acting up, so even though she could understand me, I was not really sporting a “radio voice.” Then there was the issue of how to record me because the usual procedure she uses to interview people in the US is to have someone from the local NPR station do the recording with their professional equipment. However, because I have multiple chemical sensitivity (MCS), I thought the chemical fumes on the people and their equipment would make me sick and might very well cause me to lose my voice, which would kind of defeat the purpose. So we figured out how I could use my headset mic and record my answers on the computer as a WAV file, without making extraneous breathing sounds and with my voice still being loud enough. That took a lot of tinkering!

Then we had to coördinate a time for her to interview me when I could position the mic correctly, AND my voice was working well, AND it was not the middle of the night for her (six-hour time difference between the eastern US and the UK). Which we did. (And because I live in a rural area without high-speed Internet, I wasn’t able to send her the file. I mailed a flash drive to my brother, and he sent her the file.)

Unfortunately when we made the recording, I was tired and not thinking very clearly. When I listened to my interview later I was embarrassed by how many “ums” there were and how many gaps in my speech when I was groping for words or forgetting what I was talking about. I forgot names of singers and bands that I had been thinking about before we spoke. I spoke in vague generalities about Gadget, whereas before I had been specific.

All in all, I was a bit worried about how I would sound, and I regretted agreeing to be interviewed, especially when I heard about some of the other guests, including one of the members of the Communards, and someone who was friends with Teddy Pendergrass. I thought, “Oh God, and here I am with my voice cracking about my dead dog.” I figured probably (hopefully) Maggie would just use a sentence or two of what I said.

Actually, when I listened to the program today, I thought it was beautiful. (I was also surprised by how much of my interviews she used!) I felt a real sense of fellowship with many of the other guests. Of course, because “Don’t Leave Me This Way” had been such a big hit in the gay community, and then took on special meaning with the ravages of AIDS, I was not surprised to hear about that part of its story. But I hadn’t known that Pendergrass had become disabled after he recorded the song, so there was a lot about disability and illness and living with loss. I think most people just think of it as a song that was originally a love song, which became a dance hit. But it’s a fierce dance hit. It mixes the sorrow and the joy, which was the flavor of the time of my coming out.

The other people’s stories are fascinating, and I thought there was a lot of insight in their remarks. And even though I did not have a smooth radio voice, by any means, Maggie and her crew did such an amazing job of editing the entire show, including my part, that I ended up being glad to be a part of it.

I’m hoping that other people who have lost a service dog who listen to it will feel some companionship and some solace, knowing they’re not the only one. It also reminded me why I sometimes feel frustrated with Barnum, because even though he is unbelievably sweet and lovable, he will never be the brilliant service dog that Gadget was. Barnum is a capable service dog, but he is not my arms and legs and voice, the way Gadget was. I’m okay with that now.

Please listen, and enjoy today’s edition of Soul Music about”Don’t Leave Me This Way.” And if you’re so inclined, drop me a line in the comments about what you think!

P.S. I inquired about a transcript of the show, but apparently the BBC is not providing them anymore. If I regain the use of my hands enough to be able to type again, I will try to create a transcript. But now it is just too many spoons to try to transcribe a half hour radio program using Dragon. If anyone else would like to transcribe it, please let me know. I really am sad that some of my readers and friends aren’t able to hear the show right now. I hope I can remedy that at some point.

Had It up to Ear: Barnum’s Inciting Attack of “Medical Care”

I hope eventually to be able to post about what’s happening with my writing, with Barnum’s training now that his mouth is no longer hurting him, and my involvement in increasing disability access in my town. But first, I’m gonna bend your ear about Barnum’s health woes for the past two months.

Part of the reason I have not been posting is because writing is so much slower for me since I’ve had to use speech software due to my wrist problem. But another reason is that I kept waiting for this particular health issue of Barnum’s to be resolved before posting about it. I’m beginning to wonder if it will ever be resolved! In fact, I’ve been writing this post for so long that it’s turned into a novella. Therefore I’ve decided to break it up into more than one post.

Here is our story…

Part I: I Should Have Listened to My Gut

I’ve posted several times recently about my search for a diagnosis — and eventual treatment — of Barnum’s mouth problems. At one point, Barnum had an appointment to get dental x-rays with a local veterinarian, but I didn’t post about what happened there, mostly because I was utterly physically and emotionally wrecked in the aftermath of that wretched appointment. Then we finally went to Veterinary Dental Services, and I was focused on updating you on the fascinating developments of Barnum’s malocclusion diagnosis and surgery.

But before we ever made it to VDS, Barnum suffered an attack of medical care from which he has not yet recovered. In fact, he has been to the vet so many times in the past three months that he developed a fear of riding in the car. Whereas he used to love trips in the van, after one vet trip too many he started to show definite signs of stress in the van: panting; a quiet, desperate whine; a face filled with anxiety. So that’s given me a new behavior to work on. Oh joy. More about that another time.

* * *

Before I was disabled by chronic illness — about twenty years ago — I trusted doctors and expected them to have answers. However, after spending several years hopping from doctor to doctor trying to get a diagnosis for my increasingly severe medical problems and being met with, at best, earnest confusion, and at worst, condescension and hostility, I approached doctors much more warily.

At the same time, I was having excellent experiences with veterinarians. Every time I took my cats to the vet, I was praised for my concern with my cats’ health and thanked for taking such good care of them. I remember saying to my friends, “I wish I could have a veterinarian as my doctor. They’re so kind. They listen so well. I wish people doctors could be more like animal doctors.”

Looking back, I realize there was another major difference between me and my cats other than our species: I was sick, and my animals were healthy. During those golden years, getting health care for my animals was straightforward. I’d bring the animal to the vet, and something simple, sensible, and straightforward would occur — an exam, a treatment, a procedure. Then it would be over.

Things changed radically when my first service dog, Jersey, had her eye problem misdiagnosed repeatedly — including by emergency and specialist vets who should have known better. General practice vets also misdiagnosed her, but at least they were honest about their limitations. All of this culminated in the loss of Jersey’s eye to glaucoma and the eventual discovery that the veterinary ophthalmologist who had screwed up the worst had falsified Jersey’s medical records, presumably to protect herself against litigation.

Then, with Gadget, I was faced with the challenge of obtaining veterinary care for a dog with chemical sensitivities, food allergies, and bad reactions to vaccines, heartworm preventative, and many other standard veterinary medications. The vet who had been so wonderful with Jersey — even buying a tonometer so that she could get monthly eye-pressure checks without going to the specialty hospital — did not believe that Gadget’s seizures were caused by his heartworm medication. I did eventually find an excellent vet for Gadget, but then I moved to the town where I now live, two hours away from Gadget’s holistic vet, and I had to search for a new vet again.

For the last six years I’ve made the rounds of most of the vets in my area, trying to find someone knowledgeable, accommodating of my disabilities, kind and gentle to my dog, and above all, really, really competent. At first, it seemed a wasteland. For example, one of the vets that people have referred me to has had multiple dogs die while they were under anesthesia, including young, healthy dogs undergoing something as routine as neutering. I also tried out two area holistic vets who did no harm, but who charged huge sums to do practically nothing. I found a vet who seemed okay, and then he retired.

* * *

Finally, about a year ago, I found Dr. Piwonka. She is open-minded, knowledgeable, competent, thorough, yet honest about her limitations, and, while Barnum does not adore her, he seems to trust her more than he trusts most vets. She is a keeper! She was stumped by Barnum’s mouth mystery, but it was also she who first suggested that I take him to Veterinary Dental Services. I deeply regret that I did not follow that advice when she first gave it. Because instead…

I thought, “An hour-and-a-half away? I have to drive across the state just to get x-rays?” Before this, I hadn’t even known that vets needed a special dental x-ray machine that was different from a regular x-ray machine. And even after I learned that, I thought, “Someone around here must have a dental x-ray machine!”

The problem was that I was imagining that whatever was wrong with Barnum’s mouth would be something really obvious that would show up on an x-ray. I also did not comprehend the kind of expertise that is necessary to properly interpret x-rays or understand how a dog’s mouth should look — what their teeth and jaws should look like.

So, when I learned that a vet who is very close by, “Dr. L, ” had recently acquired a dental x-ray machine, I thought, “Perfect!” True, Barnum saw this vet when he was a puppy, and I didn’t stick with her as our vet because I found her too conventional and not as knowledgeable as I would’ve liked, however some of my friends used her as their primary care vet and were satisfied with her, and I hadn’t heard any horror stories about her. Plus, she only needed to take the x-rays and look at them, right? That was simple, right?

Wrong, wrong, terribly wrong. First of all, Barnum needed to see Dr. Piwonka for an exam, bloodwork, and a referral before we could even make an appointment for the dental x-rays. Then we needed to wait two weeks for an opening in Dr. L’s schedule. But finally on May 24, Betsy drove Barnum to Dr. L for dental x-rays and what I was confident would be his diagnosis and surgical treatment.

I’m not going to say that everything that could’ve gone wrong did. After all, Barnum didn’t die under anesthesia, and Dr. L didn’t misdiagnose him or perform unnecessary oral surgery. Other than that… Let’s just say I regret my decision to take him there. Things went badly from the first moment: when Betsy arrived to drop off Barnum, she learned from the very grouchy vet tech that Dr. L had never seen Dr. Piwonka’s exam notes and bloodwork from the previous week. I scrambled to have Dr. Piwonka fax them over.

Because I didn’t 100 percent trust Dr. L already (red flag that I ignored!), I also sent a note with Barnum, outlining his symptoms of the past few months, including which things had improved when he was on antibiotics. I also requested that while Barnum was under anesthesia his hind toenails be trimmed, but not to bother with his front toenails because they didn’t need trimming.

I waited anxiously all morning, and when I called to check in with the vet at noon, as I’d been instructed, the assistant told me that Barnum was still “being worked on.” I thought, “Wow, he must have really needed some serious surgery.” I waited anxiously for her call.

When at last Dr. L called, she said that the x-rays of the left side of Barnum’s mouth had shown no abnormalities, so we still didn’t know what had caused the problems. However, his beard — the hair around his lips — was gunky with food, which smelled bad, so they had cut it off.

I was stunned. I had expected an obvious structural cause for the infection that Barnum had been suffering with for so long, so it was a real blow to still be in the dark about what the problem was. I was also shocked that Dr. L only took x-rays of the left side of Barnum’s mouth because, although Dr. Piwonka and I both believed the problem to be on the left side, I had still expected that once Barnum was under general anesthesia Dr. L would do a complete set of dental x-rays. (I later learned that she only took x-rays of a small portion of the left side of his mouth, which did not even include his canine teeth that turned out to be the major cause of the problem.) I also thought that Dr. L was saying that the poor state of Barnum’s beard might be the problem — as if the only issue had been bad breath, and as if, as a three-time Bouvier owner, I wouldn’t know what a dirty beard smelled like! (I spoke with her a few days later and discovered that I had misunderstood some of this. So please hold off on judgments of this doctor until I got to tell the rest of the story.)

“But,” I said, “It’s not just an issue of smell! Barnum has been having pain, lethargy, excessive drinking!…”

Dr. L said maybe the antibiotic had taken care of those problems.

“No,” I said and reiterated a point I’d made in my note: just a couple of days earlier, Barnum had yelped in pain when he scratched the left side of his face. She said maybe he needed to be on a different antibiotic or a stronger one. I countered that the antibiotic was definitely working — his breath had improved greatly, his energy was better, and he was drinking a normal amount of water again — but that we still don’t know what had caused the infection. She suggested keeping him on antibiotics another two weeks, and I agreed, but that didn’t get me any closer to a diagnosis.

I was beside myself with frustration and helplessness because I couldn’t think how we were going to find out what the problem was. Also, it seemed I had just subjected Barnum to general anesthesia and spent over $200 for a beard trim. But it was actually worse than that.

Even though I’d been instructed to wait till the end of the day to pick Barnum up, he was still gorked out and anxious, both aftereffects of the anesthesia, which worried me. Plus, when he got in the car he smeared blood droplets on his dog bed with every step; apparently they trimmed all his toenails, including the ones that were already filed short, so he’d been quicked multiple times. Of course, he also reeked of fragrance, but I had expected that because the more time a dog spends in a veterinary office, the worse he will smell of chemical products.

When we got home, my PCA and I washed him with unscented dog shampoo and baking soda to try to get the smell out of his fur; he still reeked and therefore so did my bedroom, and the fumes made me pretty sick for the next several days. But I was still glad that he was home. He continued to smell so strongly of fragrance that the next day Betsy and I shaved him (hair absorbs and retains scent, so cutting it off usually helps a lot).

While we were clipping Barnum I noticed something strange: the fragrance smell was much stronger around his head. When I leaned over his head I got particularly sick. While I was clipping the fur on his ears, I found a wet, sticky, oily residue in his ears. At first I thought I must have gotten soapsuds or water in his ears when I’d washed him, but then I realized the intense fragrance was coming from the residue on my fingers. Someone at the vet had trimmed his ear fur and used liberal amounts of a scented ear cleaner!

This was the beginning of the nightmare.

Tune in tomorrow(ish) for the ear-raising next installment!…

Barnum’s Dental Checkup Report

I have, at rough estimate, about a zillion posts in the works. Posts about my health, Barnum’s health, Barnum’s retraining as a service dog now that he’s undergone oral surgery, a review of pet health insurance, post about what’s happening with my writing, etc. I’m also going to be on BBC Radio 4 sometime this month, and I want to post about that before it happens. But what with one thing and another, I just haven’t been able to post!

So here is just about the shortest post I can wangle: an excerpt from the report of Barnum’s recheck by the veterinary dental specialist which took place on Friday, June 21. I’ve just pasted it in without any editing — except for the words in brackets, which contain explanations for the veterinary shorthand, in case you’re not familiar with it. And then at the end, I’ve included a brief summary translating some of the veterinarian-ese.

Physical Exam (11:41 am Bonnie H. Shope, VMD, Dipl. AVDC/BHS)
Subjective: BAR [bright, alert, responsive]
Temperament: friendly
Objective: Heart rate: 120/strong, Respiration: pant
Weight: 34.318 kg, 75.50 lb BCS [body condition score]: 5/9
Oral Cavity: teeth clean, gums healthy, class 2 malocclusion, gingival defect/recession at palatal aspect of 204 as before but there is no inflammation or accumulation of plaque or debris. 303 extraction site has healed. Restoratives at 304 and 404 in place with no discoloration. Rest of physical exam apparently normal.

Recommendations:
Barnum’s mouth looks great! Continue brushing his teeth daily.

Please bring Barnum back in December for an oral exam, consultation and dental radiographs under anesthesia to monitor the health of the lower canine teeth and evaluate the periodontal status of the upper left canine tooth.

In other words, Barnum’s in healthy shape, and while of course he still has the genetic defects and damage that resulted from them, where there was an abscess and damage to his gums and the roof of his mouth is clean and well healed. Where his incisor was pulled has also healed. Where his lower canines were cut and crowned looks good.

Or, the ultrashort version: “Everything looks good; the daily toothbrushing is paying off. See you in five months for x-rays.”

P.S. I think “Temperament: friendly” probably takes into consideration that he tried to lick the face off of his favorite lab tech, Jessica.