Three Years Ago Today

Gadget died, November 19, 2009.

Gadget and me in November of 2009

It was a week before Thanksgiving. We knew his death would come soon, but I had hoped he would hang on till after Thanksgiving. I wanted to be grateful for his presence. But the mast cell cancer raced through him, consumed him like a brush fire, destroyed him on the cellular level so that the pathologist couldn’t even be sure if he was looking at lymphoma cells or mast cells. We took our best guess, but it didn’t matter, because there was no halting it. Gadget was ready to die a week before the “holiday.”

In my former life, Thanksgiving and Passover had been my two favorite holidays, which I had celebrated with my two best friends every year since 1993. They had stopped speaking to me, so the holiday was also full of that loss.

My parents and Betsy’s mom came and tried to give us a normal Thanksgiving. I just wanted it to be over. I was a dull, relentless pain wrapped around hollowness. I couldn’t imagine ever feeling OK again, or normal, or happy.

A lot has changed since then. I still don’t really have anyone to celebrate holidays with. Those two former friends are still gone from my life, just as Gadget is. But I have Barnum. I am much less sick. I have projects I’m passionate about. Barnum has taken me on a completely different voyage than Gadget did. Thank dog.

I’m not overflowing with gratitude today, nor will I be this Thursday, I expect. The only way the day will be different is that my usual Thursday PCAs won’t be working, and a couple of other PCAs will work backup. Ah, there. Something I’m grateful for: The PCAs who are covering shifts on Thanksgiving.

The thing about anniversaries is that sometimes they sneak up on you and you don’t know what’s wrong till you’re sobbing with snot running down your face, crying in confusion, “What’s WRONG with me today?” And other times you anticipate the day with dread and then it passes, like a wave that had already pulled you out to sea, so by the time it crashed against the shore, you only felt the slight pull, the rise and fall.

I’ve been swimming in the tumultuous ocean for the last few weeks. One or more of my tick-borne diseases are acting up, causing worsened cognition, emotional disturbance, and migraines. This has made everything harder. I’ve been very triggered. Too many reminders of the season — of the onsets of my illnesses, of the trauma of natural disasters, of the losses of friends to death or … what is a neutral term for friends who have decided they don’t want to be your friend anymore? Anyway, a season of loss.

Fortunately, I’ve been very busy, and not too sick. I am in the midst of some exciting interviews for Ability Maine. I’m working on my book project very . . . very . . . very slowly. I’m trying to figure out what will go here: sharonwachsler.com. So, there are new beginnings.

But, for tonight, kindness and gentleness toward myself. If you learned anything from Gadget or loved anything about him, please post it in the comments or send me an email. If you’d like to light a (yartzheit?) candle in his memory, you can do it here.

– Sharon, Gadget — forever in my heart — and Barnum, blessedly healthy SD/SDiT

#NVC Meets Clicker Training: Needs and Reinforcers – Part 1

Writing, clicker training, and nonviolent communication (NVC) are my passions. For several months I have wanted to write a series on how NVC and clicker training overlap (thus combining all three passions) but I keep being too busy — with, guess what? Yeah. All of the above. I’ve been co-organizing an NVC telesummit that started Monday, Nov. 5!* When I do these things, it tends to use all my spoons. I made an attempt at cohosting the first call, but it was too much for me, so I’ve gone behind the scenes again. I’m better at the writing and brainstorming and promo stuff, I think.

Anyway, the more I study nonviolent communication (NVC), the more I love it. This has also been true for me with clicker training. The more I learn of both, the more obvious it becomes how I can apply the underlying principles of both to virtually everything in my life, and I find it fascinating to see how they bleed into each other.**

It’s not surprising I would see these synergies, because this is where my energy is going, but since I haven’t yet met anyone else who is passionate about both applied behaviorism and NVC, I haven’t had anyone to share these exciting little bursts of insight with. That’s where you come in!

I have heard from a couple of NVC people, and a couple of clicker people, that they’re interested in this topic, so I will take a stab at it. The most encouraging response was when I explained the difference between “splitting and lumping” to an NVC practice group facilitator, encouraging her to “split” more in her teleclasses. She later told me that that had been a useful tip which supported her in her role as facilitator. Since clicker training is basically a form of pedagogy, this shouldn’t astonish me, but I’m still always surprised when I pass a tidbit along to someone who isn’t already a clicker enthusiast and they tell me, “It worked!”

DISCLAIMER! I am not a professional in either field. I have no certifications or degrees or licenses. In both areas, I am an enthusiast, a dedicated amateur (though I’ve been clicker training much longer than studying NVC). I strongly encourage you to ask questions, to challenge me, to tell me if you disagree with me — and of course, because I am a believer in positive reinforcement, I also encourage you to share what you like, what makes sense, and where you think you can expand on my ideas. I think these sorts of interchanges — no matter whether they take the form of agreement or disagreement — offer the most potential for juicy learning and cross-pollination of ideas. I hope this will be a wonderful learning opportunity for many people, especially me!

I’m actually going to leave my attempt at defining what NVC or clicker training are, including the purpose of each, till another time. I want to start off with what I see as the basic “unit” of each practice. In NVC language, this would be “needs.” In clicker language, it’s called “reinforcement.”

In this post, I’ll tackle needs. The next post on this topic will take on reinforcement.

Cartoon by Sven Hartenstein

Needs – Human Example

Let’s start with needs. NVC holds as a basic tenet that all people have the same basic needs. This list at the Center for Nonviolent Communication is a basic example, though I prefer this PDF by Miki and Arnina Kashtan of BayNVC.

Now I’m going to say something that a lot of NVC practitioners (and other people) might find challenging, but I hope you’ll stick with me anyway. My first NVC teacher and main mentor believes, as do I, that animals have the same basic needs as humans. In other words, those lists I linked to are not just lists of universal human needs; they are cross-species lists of needs. If you’re thinking, “What about bacteria? What about amoebas? I doubt they have most of these needs,” I agree with you. Though I can’t prove it, I think it unlikely that bacteria have a need for companionship or trust or fun. So when I refer to an animal/being in these discussions, I mean “anything with a brainstem that eats,” because that’s Karen Pryor’s definition of an animal that can be clicker trained, and because I think it’s a manageable and reasonable way to define parameters. And yes, that includes humans — people can definitely be clicker trained, though it’s called TAGteaching (mostly because a lot of parents got in a flap when they learned their kids were being taught using a tool “that was for animals!”).

Taxonomy of Basic Needs

All cartoon by Sven Hartenstein, used under a Creative Commons Attribution license.

Do ALL animals need everything on the lists I’ve linked to? Maybe not, but then not ALL humans need everything on these lists, either. For example, I know some people who would say “sexual expression” is not a need for them. However, overall these are universal human needs, and enough experiences and science support my belief that they are equally applicable universal needs among social species, such as dogs, horses, parrots, apes, and dolphins, to name just a few. (If you’d like more information on this topic, I recommend For the Love of a Dog: Understanding Emotions in You and in Your Best Friend by Patricia McConnell, who studied both zoology and behavioral psychology. Although the book is geared to dog lovers, McConnell uses other species as examples as well.)

At any rate, a lot of learning to practice NVC is learning to connect with the basic needs at play in ourselves or in others with whom we’re interacting. This often takes the form of hearing the needs underneath the strategies we are using to try to get those needs met. For example, suppose I’m in an argument with my partner (this is hypothetical — I’m not saying this is an argument I have with my partner, nor that this is the language she’d choose), and she says, “You’ve spent the whole day blogging, and now it’s almost bedtime and you’re still at it! I’ve been waiting for you to watch a movie with me! I rented this DVD so we could have some time together, but you care about that stupid computer more than me!”

If I have my “NVC hat” on (as opposed to losing my head), I might make some guesses as to what my partner is saying her needs are. From an NVC perspective, her need is not to watch a movie because plenty of people and animals don’t care about movies; movie-watching is not an universal need among people. So, what are the possible needs she is asserting? My guesses might be that her needs are for fun, connection, companionship, and knowing she matters.

I might try to find out by asking, “Were you really wanting to have some connection with me tonight? To know that you’re important (matter more to me than my computer)?”

Painfully true. (Just ask Betsy.)

Another cartoon by Sven Hartenstein

If she says, “Well, yes, I do want to spend time with you, but I also am just really sick of work, and I can’t understand why you aren’t! We spend all day on our computers, and now I’ve got this movie we’ve been waiting to see, and I want to watch it! Don’t you?”

From this, I think probably her primary need is fun (play, relaxation, enjoyment) and secondarily also some companionship in having fun. So, watching the movie with me (or by herself, or with someone else) might meet her needs, but so also might other forms of play, relaxation, or enjoyment, such as playing cards or backgammon or doing something fun with the dog or with someone else. So I might agree to watch the movie with her, or if I want to keep working, I might empathize with her need for fun and ask if she’d be willing to watch it without me — if that would still be fun and relaxing for her? And we’d go from there. Her needs have been identified, however. (My needs will be in another post in the future!)

Needs – Canine Example

Now I’m going to apply the same scenario to a dog! (Note: Because I have more experience with behavior in dogs than in any other nonhuman species, my examples will usually be dogs, but I encourage people with birds, horses, llamas, rats, etc., to comment with questions or examples.)

I’m blogging away at my computer, and Barnum starts barking. (This IS a real example which happened while I was writing this post, so I used our interaction as an experiment.) He’s looking out the window when he barks. Barking is no more a universal need among dogs than movie-watching is among people. Don’t believe me? My first service dog (same breed) never barked, even when a stranger approached the house. So, what is the need underneath the behavior here? First, I’ll tell you what I think he was “saying,” before I tell you what needs I guessed. I guessed he was saying, “I see someone in the yard, and I want you to know that they’re there!”

What’s that?!

Note that there appears to be an extra step here: I am interpreting Barnum’s dog language into human words. This is a difference between communicating with most animals and most humans; humans are more likely to be able to use language we think we understand to interpret into needs. However, we often rely too much on language, thinking we know what another person is saying when we don’t, and we tend to ignore obvious (body) language from nonhuman animals about what they are saying. There are many times I know quite clearly what a dog is saying to me, while I can have a long, drawn-out discussion or argument with a person before I have a facepalm moment and say, “Ohhhh, so you mean X?!” Sometimes I’m not sure what Barnum (or another dog) is saying to me, and sometimes I am.

With either species, the process is basically the same: You make guesses and see how they land. With a dog, you often need to use a strategy to make a guess because just asking the dog, “Are you wanting X?” doesn’t always work. (Note: Except when it does. Many dogs know words for toy/ball, play, eat, dinner, car, walk, out, etc. Barnum knows the words “train” and “training,” and I try to use care about saying them in his hearing because he can get very disappointed if training is not forthcoming when he thinks it is.) Anyway, aside from these obvious examples, you usually “ask” a dog what they want by beginning a strategy that you think will meet their need and see how they react to it.

In this case, if I think Barnum is saying, “Pay attention! Intruder alert!” I’m likely to guess that Barnum’s need is communication, contribution, and safety. In other words, he wants to communicate to me that one or both of us might need to handle the danger of a stranger coming to our home; he wants to contribute to me by letting me know this. So I would probably thank Barnum for barking, ask him to be quiet, and treat him for remaining quiet while I look out the window or go to the door to see who’s outside. Looking out the window is partly for my own peace of mind and partly to convey to him that I have heard his alert and am taking it seriously — that he has communicated successfully to me his concern for our safety.

Suppose I do this and I see . . . nobody! Which is what happened! Either I guessed wrong or there was a dog, neighbor, or other “disturbance” he saw, heard, or smelled (perhaps in our neighbor’s yard) that I didn’t see. So, I went back to my work (this blog). As with my human partner, my initial guess was not entirely correct, but I’m still open to more information.

A few minutes later, Barnum — who was looking out the window again — barked again. Obviously what I did before did not meet his needs. I’m going to make a new set of guesses. I watch him for a few seconds and notice that his bark and body posture are a bit different from when he is truly alarm barking. I also catch him glancing at me a couple of times between barks.

I decided that actually Barnum is probably thinking, “I’m bored! She’s been staring at the computer all day, but last time I barked, she paid me some attention and moved away from the computer. If I keep barking, she will probably pay attention to me by telling me to be quiet, and I might even get a treat if I am quiet, and then I can do it again!”

Are you STILL on the computer?

I made a different set of guesses about his needs. I guessed Barnum might have needs for stimulation, play, challenge, purpose, connection, or companionship. Possible strategies to meet these needs include: physical affection (ear rubs, belly rubs, butt scritches), play (tug, fetch, chase), a puzzle toy (Buster Cube, treat ball, Kong), or training — which engages body and mind and usually is his favorite strategy for meeting needs of connection, creativity, purpose, challenge, stimulation, learning, and movement, among others.***

I decided to leave training as a last resort for three reasons: 1. It’s what I usually use, and I wanted to experiment. 2. I wanted to finish this post, and training can use up a lot of my physical and mental energy. 3. Training meets so many of Barnum’s needs that it would be harder to distinguish which specific needs were successfully being met by the strategy of training (normally not something I care about, but for the purposes of this experiment, I wanted to try to figure it out).

Then I actually tested this out while I was writing this post. I didn’t start with petting because Barnum rarely wants petting except first thing in the morning or last thing at night. (It’s a Bouvier thing.) I was also interpreting his body language as requesting more active engagement than passively receiving physical affection. So, I moved to the edge of my bed, got a plush squeaky toy and threw it for him. (The spider that quacks like a duck!)

It actually looks creepier in real life. And it sheds!

He was not that interested at first, but then when I made it clear I would play with him (by voice and body language), he got it, and we played some version of tug/fetch/chase. Much to my surprise, when we started playing this way, he came over all wiggly and pressed himself against me. I took that as a request for petting, which is a delicious and rare treat for me (mutually reinforcing, AKA meeting needs for physical affection and connection for both of us). I vigorously rubbed his back and sides and scratched his butt, then he happily bounded over to pounce on his toy. We played some more, during which he requested scritches one more time, and then he got bored.

At this point, I could have decided his needs were probably met. Clearly he HAD had a need for connection with me, including physical affection, and I was touched by that. He’d had some fun, but my guess was that he had not had enough stimulation, play, and similar needs satisfied. If I went back to the computer, he might go back to looking out the window and maybe barking. Even if he didn’t, he might still have these unmet needs but just suffer in silence.

I thought it was likely that his needs for mental engagement (stimulation, challenge, play, whatever you want to call them), were still unmet. Again, I wanted to see if something other than training would work for him. I gave him a previously stuffed IQ Treat Ball set to a high difficulty level. He immediately began pushing it around my room, trying to get the kibble to fall out.

Can be made difficult or  easy to get treats out by rolling

This might seem like a strategy for meeting a need for food, but I have often found that Barnum prefers a food-dispensing toy to easily-accessed food. For example, once when I was leaving the house, I left him a raw knuckle bone and the Buster Cube to occupy himself. Betsy came back into the house because she’d forgotten her hat and saw that he was ignoring the knuckle bone completely — normally a high-value food reward — in favor of the Buster Cuber, with its lower value kibble, because the reinforcement of working to get the food out was so much better. In other words, in that case, his need for challenge or work was greater than his need for eating or chewing.

Barnum pushed the ball around my room until either it was empty or it got stuck under my bed (or maybe both — he’s pretty good at getting toys and treats out from under furniture) and then went to his crate and took a nap. I decided his needs for connection and activity had been met, and now he had a desire for peace, rest, or space.

Goodnight, everybody.

Future posts on NVC and clicker training may cover some of these similarities:

• Opposition to punishment
• Splitting
• Assumption of innocence
• Observation
• Separating behaviors from intent
• Focusing on the moment, not guessing stories
• “Respect the organism”/Recognizing that the other has needs
• Asking for what you want, not what you don’t want

Please let me know what you think of this topic!

– Sharon and Barnum, SD/SDiT

Notes:

*I’ve decided not to post my NVC events here from now on because I think you’re probably not that interested in that. But if you do want to be on my mailing list for NVC events I’m helping to organize, drop me a line and I’ll add you to my email list. If you want to read the blog posts I’ve been writing on this, they’re at Mair Alight’s blog, where I’ve been putting up information on the telesummit.

**I’m also clear on a couple of very fundamental principles in each practice that seem to clash as theory. From the clicker side, I anticipate the argument, “But we can get the behavior we want without needing to know WHY it’s occurring,” and yes, this is often true, and it is often true that it helps a lot to know the need behind the behavior in the first place to prevent it or to influence it. From the NVC side, I anticipate two major arguments: 1. That animals aren’t people, and 2. that clicker training (and behaviorism in general) is used to elicit behavior, which is “manipulation.” Indeed, the founder of NVC, Marshall Rosenberg, refers to “manipulation” as a form of violence specifically stating “that would include any use of punishment and reward.” I think actually both science and experience can show that, in practice, these are complementary, not antagonistic, approaches. I definitely plan to delve more deeply into these issues later. You might get some ideas of where I’m heading if you read Rosenberg’s article, “Praise versus Encouragement.”

***Note to trainers concerned that I’m reinforcing an undesirable behavior chain: I asked for a down-stay then worked at the computer for a short time before the next step to break the behavior chain of bark-cued quiet-reward for quiet.

Guest Post: Dealing with Second Dog Syndrome

I’m delighted to be able to offer this guest post today by psychologist and long-time guide dog partner, Kathie Schneider. You’ll learn more about Kathie and her new blog in her bio at the bottom of this post.

Reading Kathie’s article made me aware that one can go through “Second Dog Syndrome” with any successor dog — not necessarily only the second. I experienced virtually every emotional twist and turn she describes below when I got Barnum, even though he was my third dog, not my second.

I hope you will find this post as supportive and informative as I have. If so, give Kathie some love in the comments. And I hope Kathie will return with future guest posts about assistance dog grief, loss, or transition.

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

Three Steps to Dealing with Second Dog Syndrome

By Katherine Schneider, Ph.D and guide dog user for 39 years

If you’ve had more than one service/assistance dog and someone brings up the subject of second dog syndrome (SDS), I’ll bet you know exactly what they’re talking about. Maybe you didn’t have it a lot or maybe it didn’t hit you until your third dog; but comparing, and finding you don’t love or like second dog as much as first dog, is as natural as dogs greeting by smelling each others’ back ends, but not nearly as much fun.

The first step in dealing with second dog syndrome is accepting it as real and forgivable. Of course you compare; young children learn to pick out what’s different in a picture and we praise them for noticing differences. New Dog may look different, act different, work different, and even smell different. You had history with Old Dog. All you have with New Dog is hopes and dreams. As Old Dog gets further in the past, memories of the bad things they did fade first; in other words, they become a saint. New Dog is young and foolish and the bad things they do are right here and now.

Most of all, you have changed. You’re older and perhaps less flexible, both physically and mentally. If Old Dog worked well for you, it was a life changer for you, kind of like first love. Now you’ve come to expect that level of dignity and independence in a functioning service/assistance dog. New Dog has big shoes to fill. If Old Dog didn’t work out well, you’ve got a million ideas of what you and New Dog need to do differently this time.

So when you think those thoughts of “Old Dog would never have done that,” “I don’t love/like New Dog,” and “I wish I still had Old Dog,” chalk it up to second dog syndrome and say to yourself, to New Dog, or to a friend who might understand, “I’m having a SDS moment, forgive me.”

If you acknowledge those second dog syndrome thoughts instead of trying to fight them, they lose some of their power. You’re not wasting your time and energy feeling guilty. Instead you can begin step two: When you find yourself comparing, try to add an “and” occasionally. Old Dog was better at this and New Dog is good at this. On a really bad day it may be, “And New Dog looks cute when he/she is asleep.” When others point out, “Old dog would never have done that” about your New Dog, all you can say is, “Yes and I really miss Old Dog too.” Unless of course you have time to educate the thoughtless passer-by about second dog syndrome. Included in that education could be the fact that New Dog is not a replacement, but a successor. Old Dog will never be replaced.

The third step is give it time and work. Rome wasn’t built in a day and neither are relationships. Gradually you may notice more things about New Dog that you like and they will grow up and settle into their job. If you take care of them like a valued employee, they’ll work to earn your trust and love. In my experience, they’re quicker to love than I am anyway, so as I find myself with each successor dog in the middle of my heart I learn that I have a big heart. Then when people ask, “Which was your favorite, really?” I can truthfully say: “It’s just like your kids; they are each my favorite in different ways.”

* * *

Katherine Schneider, Ph.D. is a retired clinical psychologist, blind from birth and living with fibromyalgia. She’s written a memoir, To the Left of Inspiration: Adventures in Living with Disabilities, and a children’s book, Your Treasure Hunt: Disabilities and Finding Your Gold. She’s had Seeing Eye dogs for 39 years. Her latest writing venture is a blog, Kathie Comments, about subjects ranging from aging with disabilities to assistance/service dogs to disability activism.

Via the Way Back Machine: Bereavement for Service Dogs

I started this blog with the goal of providing support and resources for other grieving partners of assistance dogs. For a variety of reasons, I have not posted most of the information I’ve collected. One reason was that I wanted to present it all in a complete, comprehensive, and organized fashion, and I just haven’t managed that yet.

Lately, I’ve come across many people facing loss around assistance dogs: A friend online who had to retire her guide dog and has not been able to get another yet. A client of one of my healthcare providers whose service dog has died. A post on a social network by someone who’s experiencing anticipatory grief as she sees her service dog aging. A friend who is struggling with serious health issues in her assistance dog and doesn’t know what the future holds for their working partnership.

All of this need for support — and the fact that my grief has softened into something much more comfortable — has spurred me to action. I’m trying to post a resource here and there, when I’m able, because when I was coping with Gadget’s illness and death, I needed much more support than I got. I found so little in the way of resources that met my needs for shared reality around the loss of not just a companion and family member, but a personal assistant, a breathing complex of assistive technology, a partner, a coworker, a teacher and student. Many kind people offered support, and I was and am grateful for it. Still, losing an assistance dog is a unique form of loss, and I was lonely for others who understand all the aspects of this complex loss.

Here is one resource I did find specific to service dog grief, and it was extremely helpful.

The Association for Pet Loss and Bereavement (APLB) used to have a service dog committee that was specifically for support of assistance dog partners dealing with the retirement or death of their canine partner (both anticipatory grief and grief after-the-fact). They had an excellent page on the unique issues associated with assistance dog loss, as well as an online chat. Unfortunately, these services are no longer available.

However, it’s still possible to access their terrific page describing assistance dog loss issues through a cache-retrieval site called “The Way Back Machine.” I started working with a new therapist when Gadget was dying. One of the first things I did was to print out this information and mail it to her. It gave her more understanding of how this loss was affecting my life.

Here it is: Cached page from APLB on Bereavement for  Service Dogs.

Please note: Because this is a cached (not current) document, the phone numbers and links (names, email addresses, events) are not current. Nonetheless, the information about what it means to lose an assistance dog or end a partnership is timeless.

I recommend giving copies to family, friends, coworkers, or counselors who are willing to learn more about the unique issues in losing an assistance dog through death or retirement. I also recommend this page to assistance dog partners, themselves, as it can be very validating about what you’re going through.

To see my current list of grief resources, please visit the After Gadget Grief Resources page. I hope to continue to update the page as I add more live links. Please share this post with anyone you know who has suffered or is facing the loss of an assistance dog.

With wishes for peace and healing for all who grieve,

Sharon, the muse of Gadget, and Barnum, SD/SDiT

Signal Boost: IAADP’s Assistance Dog Grief Pilot Program

I’ve posted previously about the International Association of Assistance Dog Partners (IAADP), and I frequently encourage people involved with assistance dogs to join the organization. Why? It’s a unique organization in that it represents and supports all people with assistance dogs (ADs), regardless of the type (guide, hearing, service, or combo) or training (private-trained, program-trained, partner-trained, or a combination) of the AD. And, while most members live in the US, like its name says, it is an international organization.

IAADP provides benefits to partner members, including an information help line and discounts for certain supplies and veterinary products. It’s also a terrifically effective activist organization. And it has a great newsletter, Partner’s Forum, that is entertaining and very informative.

Anyone can join IAADP, although to be a partner member (to receive partner-member benefits and to vote in elections), you must be a disabled person partnered with an adult working service dog who meets certain criteria. However, trainers, puppy raisers, AD programs, and other interested parties can get a lot out of a friend membership or provider membership, as well as supporting an excellent cause.

I’ve been an IAADP member since I trained my first service dog in 1999. Toni Eames — one of the founders and long-time officer of the organization — used to be listed as the person to call for grief support. Sadly, three weeks before Gadget died, Toni’s husband, Ed Eames, the president of IAADP, died. Obviously I did not call her for grief support. I figured she had more than enough grief to deal with on her own. Ed’s loss was a loss to the entire assistance dog community, in fact.

However, in the years since then, Partner’s Forum has had some articles — and referred to pamphlets — about grief-related issues. I’m hoping they’ll eventually appear on the IAADP website. Meanwhile, in the April 2012 edition of the newsletter, the following information appeared:

Pilot Program for Grieving Partners

Are you grieving the loss or the impending retirement of your assistance dog? Would you like to participate in a monthly support group by phone with others in the same situation? A committee of the IAADP will start offering these phone calls in June, 2012. If interested, email ADLC[at]iaadp.org and one of the call facilitators will be in touch with you to see if the group is right for you. Since the committee has no idea how many assistance dog partners may be interested in this service, the first ones who contact ADLC[at]iaadp.org will be served first.

If you’ve been through the loss of an assistance dog and would like to  consider helping the committee, please also contact us at the above e-mail address or call 888-544-2237 and leave your name and phone number for a return call.

We want to be there for you in this time of transition.

So, if you’re interested in offering or receiving support on assistance dog loss, and you are not yet a member of IAADP, this is a good time to look into that. You can also find the announcement at the IAADP website’s Assistance Dog Loss Committee page.

– Sharon, remembering Jersey and Gadget, and currently partnered with Barnum, SD/SDiT

Service Dogs & Friends: Familiarity Breeds … Confusion? BADD 2012

This post is in honor of Blogging Against Disablism Day (BADD) and the spring issue of the Assistance Dog Blog Carnival (ADBC).

BADD 2012!

Every year on May 1, bloggers from around the world post about some aspect of disability oppression. This is what’s known as a blogswarm. Check out the huge number of excellent posts — entertaining, emotional, or educational — at this year’s BADD!

Effects on others

The topic for this quarter’s ADBC is, “How has a working dog in your life affected other people and/or the relationships in your life?”

Lately, I’ve been forced into the realization that, in many ways, raising, training, and handling my own service dogs (SDs) has a negative effect on my IRL (in real life) human relationships, and likewise, my human relationships make raising, training, and handling my SDs much harder. I have many rich, rewarding relationships with other assistance dog partners and trainers online, but when it comes to people I see in the flesh or talk to on the phone, I have no SD partner friends. Ironically, the biggest challenge comes not from those who dislike or are indifferent to dogs. No, the biggest challenge comes from those in my life who are fond of or have some sort of relationship with my dog(s) or who feel a connection to the SD world.

Here are some of the common problems, many of which overlap with each other:

• Some perceive me as an extension of my service dog. They often prioritize their interactions with the dog over their interactions with me. They may or may not have any problem with me, but still may only want to be around me to interact with my dog.

• Some see my SD as just a dog, a pet, and are either unwilling or unable to see that my SD’s role in my life is much more complex, and requires much more upkeep and care, than that of a pet dog. They want to do what they want to do with the dog because it’s fun, and it makes them feel good. The effect that their behavior has on me and my working dog is either unclear to them or less important to them than the pleasure they derive from doing what they enjoy with my SD.

• Some misinterpret behavior that I allow or encourage with my own SD as giving them special privileges to interact with other people’s SDs in similar ways. They don’t seem to understand the difference in acceptable behavior with a dog who is at home, not working, and with whom they are interacting as a house guest, with acceptable behavior with a stranger’s dog or even my dog when he is working or training.

• Some have their own relationship to my SD and feel hurt or angry if I put restrictions on their interactions because of choices I make for the good of my working partnership or training. They may or may not intellectually understand or agree with the behaviors I am requesting or enforcing, but they still find them emotionally difficult. They may also think I’m being “mean” (or capricious, or dictatorial) to the dog or to them by disallowing behavior that disrupts my dog’s manners, obedience, or ability to work but which they find pleasurable (or which they believe the dog enjoys).

Here are some recent examples of how these situations have played out. I have altered some details to preserve anonymity.

1. “I saw a service dog and thought of you.” The story I relate below has happened with other people, in similar circumstances, over the last 13 years.

A recent acquaintance who met Barnum, my service dog, at my house a couple of times mentioned in a phone call that she met a miniature poodle SD while at the grocery store. She then said, “I bent down — because I wasn’t allowed to pick her up — and she gave me many kisses. I thought of you and Barnum.”

I didn’t know the particulars of the situation, so I didn’t know the service dog handler’s policies, comfort level in asserting her needs, the dog’s job, or my acquaintance’s relationship to the handler, but hearing her say this, I felt very uncomfortable. It is a universal experience for assistance dog (AD) partners that wherever we go, our dogs attract attention. Some partners enjoy a certain amount of attention from the public as an opportunity to educate or to feel less isolated. However, almost every AD partner I know — and I know a lot of people with guide, hearing, and service dogs — hates the constant intrusions, interruptions, and distractions of members of the public asking them about their AD or talking to, petting, or otherwise distracting their AD from its job. We find the work involved with constantly interacting with people we have not chosen to interact with exhausting.

The overwhelming majority of the people who cause us so much distress do it unwittingly, with only good intentions. This is part of what can make it so hard to deal with. These kind-hearted, dog-loving people usually feel happy and excited to see a working dog and may feel a connection to that team because of their relationship with me or Barnum. They may want to connect with that person or their dog, thinking that they are offering support by way of understanding. What they often don’t realize is that the partner/handler’s experience is quite different. We deal with comments, questions, and distractions all day. We generally don’t care if your friend or niece has a SD, or if you puppy-raised once, or if you follow a hearing-dog blog.

Within an hour or two of being in public, I can have a dozen people stop me to ask, “What kind of dog is that?” “What’s his name?” “What does he do for you?” “Where did you get him?” “Can I pet him?” “How long have you had him?” “He’s so handsome!” “I have a dog, too, but he’s not nearly that smart!” “What a wonderful friend he must be to you!” “Aren’t you lucky to have him!” “I wish I could have a service dog,” and on and on.

The questions and comments are difficult enough, but at least we have some control over how we choose to answer (or ignore) the questions. What we cannot ignore, and what can often be dangerous to our safety and well-being, are people who interfere with our canine assistants. Any of the following constitutes interfering:

• Talking to the dog (or talking “about” the dog to their handler using a high, squeaky, excitable, baby-talk voice)
• Petting the dog
• Extending their hand for the dog to sniff
• Thumping the dog on the back as they walk by
• Clapping
• Whistling
• Shouting or making other sudden or unexpected movements to “test” the dog
• Stepping on, kicking, or running into the dog with a shopping cart (yes, people do these things)
• Leaning down to get kisses

Part of the problem seems to be that some people, like my acquaintance, are trying to be respectful and “follow the rules” but they don’t get the overall concept of what good “assistance dog etiquette” is. They see the dog’s “Don’t Pet Me” patches, so they don’t pet the dog, but they talk to the dog instead. This can be even more distracting to many dogs. This is why many of us are switching from patches and signs that say, “Don’t Pet” to “Do Not DISTRACT.” For example, my guess as to what happened in the case of my acquaintance who got kisses from the miniature poodle is that they asked to pick the dog up (which shocked me in itself! Fortunately this is something nobody ever has asked me, since I have an 80-pound dog), and when the handler said, “Sorry, no,” they either asked if they could “say hi” or they just went ahead and did it.

Note: Just because an AD partner tells you it’s okay to pet their dog or talk to their dog doesn’t mean it actually is. They may be so worn out by saying “no” all day, or they may have received enough hostile reactions to their “no,” that they just give up and allow it, hoping it will make things faster and easier than trying to explain why it’s really not okay.

I was particularly concerned when I heard the miniature poodle SD story because small breed SDs are almost always used for some sort of health alert. They may alert or respond to seizures, changes in blood sugar, or psychological states, such as panic attacks, PTSD episodes, depersonalization, dissociation, or other states that require the dog to be completely tuned in to their partner at all times. They are likely on the watch for a change in their partner’s smell, gait, facial expressions, or other behavior. A dog that is busy kissing someone or being petted is not going to notice these things. You cannot necessarily tell by looking at an AD whether it is “on duty” or not. It is safest for the team if you assume the dog is on duty.

I have heard, over the years, from my friends, health care workers, family members, and others that they approached strangers with assistance dogs because they “thought of you and Jersey/Gadget/Barnum.” I’m always shocked, and I’m almost always tongue-tied. I know they are acting out of fond feelings for me or my SD, but I want to tell them, “The kindest and most supportive thing you can do for any working or training team you see in public — the best way you can honor me and my 13 years of training and partnering with service dogs — is to completely ignore the dog.” It goes against human nature, I know. But it’s really what the vast majority of us want. It is certainly what I want when I’m in public, training or working my dog.

I feel very uncomfortable not knowing how to educate people when I hear these kinds of comments. They pop up out of nowhere, and not usually in contexts where I can stop what I’m doing and go into gentle-assistance-dog-handler-education-mode. So I often say nothing. Then I feel guilty that I am contributing to the problems other handlers are facing with these people who likely think I approve and support their choices to interact with strangers with working dogs.

2. A person’s relationship to my dog — as a dog, not as my working dog — is more important to them than their relationship with me.

Someone recently ended a relationship with me because we had differing desires for how he would interact with my dog and what we saw his role as being. This was someone whom I perceived as “a friend who really likes my dogs.” I thought he was interested in helping me out with them in part because it was useful to me, and in part because he enjoyed his time with my dogs. I discovered, however, that his interest was entirely in having fun with my dogs, and that he did not consider me a friend. This has been a painful discovery for me.

I thought we were friends with a long history of a shared love of my dogs. I knew that there were sometimes conflicting desires about how he wanted to interact with my dogs versus how I wanted them to interact together, but I thought we had the same goal of me having healthy, happy, good working partners. In a recent interaction where this person explained his perception of our relationship, he said that his only sadness was that he would not be interacting with my dogs anymore. He did not feel sad that we had ended our relationship with conflict.

In this conversation, he referred to my service dogs as “your pets.” To me, this explained a lot.

Our disagreements always involved my requesting him to require certain standards of behavior from my dogs. Not to jump up to greet him was one. Not to pull on the leash was another. To sit before and after exiting the vehicle. These rules were for my own and the dogs’ safety, for the dogs’ sense of stability in knowing what was expected of them in all situations, and for their ability to retain the behaviors I needed in my canine assistants.

However, this person and I had different agendas, and it’s only now that I realize how big that difference was. When I saw him allowing, or encouraging, my SD to jump up on him in greeting, I thought that he just didn’t understand why that was a problem, that I hadn’t explained it fully enough. So, I would explain again. I learned, eventually, that he did know that I didn’t want this behavior, but he wanted it, so he “snuck it in” when I wasn’t looking. It was their little secret, between them. This worked alright with my previous SD, Gadget, who was able to distinguish what behavior was allowable with this person only, and what was required with everyone else. However, Barnum, whom I’ve raised from puppyhood, doesn’t make these distinctions as easily and generalizes more. Therefore, it’s very detrimental to his training to have jumping up allowed or encouraged, ever.

Similarly, for the past two years one of my helpers and I have spent hundreds of hours working on loose leash walking with Barnum. I have worked with everyone in my household who ever has Barnum on leash for a split second about how to preserve this training. I couldn’t understand why we could never maintain our progress. Then I discovered that this guy was allowing, or even encouraging, excited behavior which involved, or led to, pulling on leash. I explained again, as I had so many times, why it was important not to let Barnum pull. That was the end of our relationship. He let me know that his interest was in having fun with my dog. Having fun did not involve having to follow my rules for interacting with Barnum.

Of course, everyone has different needs and desires in a relationship. I can understand that some people just want to have fun with a “pet” and not worry about the impact their behavior has on that dog’s person. At the same time, none of the dogs this man knew were pets. They were all working dogs. Canine assistants. The equivalent, for legal purposes, of assistive technology. My SDs make my life safer, less physically painful or exhausting, assist with my communication with others, and provide me with more independence. I almost never leave my house. I am confined to bed almost fulltime. I don’t get to socialize with anyone IRL, except my PCAs and part of my family. In other words, my life is extremely confined, constrained, and limited. Any tiny drop of increased energy, decreased pain, or increased freedom is unbelievably precious to me. And anything that interferes with my dog’s ability to provide this assistance is very painful — sometimes unbearably and heartbreakingly so. I have been without a fully trained assistance dog for three years — since Gadget’s cancer went out of remission in 2009. Sometimes I just can’t stand how long it’s taking, and how unbelievably hard it’s been, to train Gadget’s successor. Knowing that someone I considered a friend doesn’t care about that at all really hurts.

To know that someone I thought of as a friend prioritized their unalloyed fun with my dog over my ability to finish training my dog to improve the quality of my very limited life is quite painful.

3. A person’s relationship to my dog is often intertwined with their feelings about, or relationships with, their parents, their children, their inner children, their own animals, etc., and when I don’t allow them to interact with my SD in ways they find emotionally comfortable, soothing, or pleasurable, they sometimes get very upset.

Sometimes these people are aware of the emotional triggers taking place and can talk to me about it. Then we can talk about what’s going on for them. I can try to empathize with them while also taking care of my own need for my dog’s behavior to be under my control. I hope they will be able to hear me when I explain the practical reasons why I’m asking them not to talk to or pet the dog, let him jump on my bed, beg for food, get treats, etc. Sometimes we can understand and support each other. Sometimes I end up feeling very lonely and exhausted by having to defend my methods. I worry that people in my life think I’m being “mean,” or that I’m just making up rules because that’s fun.

The bottom line in all these situations is that I wish people would understand that my service dog is not a pet. He is not a toy. He is not in their life for their entertainment. Yes, very often my dog and the people in my life share play, love, and affection. I really enjoy when people in my life love and respect my dogs. But, foremost, I want them to recognize — and act accordingly — that my dog is in my life to help me lead a safer, more independent, healthier, richer life. Lately, I look back with longing on the days when I trained my previous two dogs pretty much in isolation. When I lived alone and did not have assistants and carers in my home most of the time. The lines of communication were much clearer with my dogs.

However, back in those days, I was not nearly as sick and disabled as I am now. I no longer have the option of relying primarily on my service dog and my self to survive. For better and for worse, I have people in my life much more of the time, and for better and for worse, these people interact with my service dogs or dogs-in-training, and I have to do constant training and management not only in training my SD, but with these people in how they interact with my dog.

– Sharon, the muses of Jersey and Gadget, and Barnum, SD/SDiT

Good Grief: The Healing Power of Communal Mourning

I’ve written about grief on occasion here, and usually I get comments along the lines of, “I’m so sorry this is so hard for you.” Now, I always love to get comments! I love to know people are reading, and I’m interested in how my posts affect them and what they have to say. And I appreciate their heart-felt sympathy. At the same time, these comments have surprised me because I’ve been so relieved and happy that I am finally able to grieve. It sounds strange, but to finally be able to blog about my grief and to actively grieve is a wonderful gift. I celebrate it.

I think some of the dissonance between how I feel and how others guess I feel might have to do with a few factors, maybe in combination:

• the difference between the noun (grief) and the verb (grieving)
• my perspective on grief, which is at odds with our American culture’s relationship to grief
• the fact that the ride I’ve been on in the last few years is not one most have taken. (Thank God.)
• how I am coming to experience and express emotions since I started practicing Nonviolent Communication (NVC).

What do I mean by the ride I’ve taken? Well, I experienced a truckload of losses in a short time, and both because there were so many things to grieve, and because I was in a fight for my life, and because the very losses I incurred severely reduced my resources for coping and grieving, I was just way too overwhelmed to process it all. (If you know my story, you can skip the bulleted list below.)

Beginning in November 2007 and culminating with Gadget’s death in November 2009, I suffered the following losses:

• basically overnight, due to Lyme disease and other tick-borne diseases, I lost the ability to speak, move my limbs, sit up unaided, tolerate sound/touch/light/movement, which then involved the loss of communication and of my independence and freedom to go to the bathroom, get out of bed, feed myself, bathe, brush my teeth, etc., without a great deal of assistance
• along with all the above was intractable pain, both body pain and continuous migraines. Pain isn’t usually described as a loss, but it’s horrible and traumatic, and it definitely involved loss of joy and ease and all sorts of things that are hard to put into words
• also along with this, I experienced major mood and behavior changes (due to neurological damage from tick-borne diseases), which actually left me feeling like I had lost my self. I hadn’t even thought it was possible to lose myself before, and the fact that I could be taken over like that by feelings I hated and couldn’t control was terrifying, painful, and a source of shame (compounded by the way others reacted to my moods and behavior)
• loss of important parts of my mind/cognitive functioning, including interest in writing, sex, or any form of creative expression
• all this led to serious relationship damage with virtually everyone in my life, and the loss of trust and safety I had previously felt
• then I went through a natural disaster which I’ve written about before, which caused me PTSD and further losses in my sense of safety in my home and in the world
• immediately following that, my best friend of 16 years (and my main interpreter) ended our relationship, and her sister, my other best friend, and I experienced a tremendous strain in our relationship, so that we barely spoke
• one of my best friends, Norm Meldrum, died
• my therapist terminated with me
• other friends left me or died
• Gadget, my service dog, was diagnosed with lymphoma
• Gadget died of mast cell cancer
• my remaining best friend finally ended our foundering relationship

That’s a crapload of loss. In two years, I lost almost my entire social network and family of choice, my service dog, my functionality, and virtually any feelings of self-worth. Most of the meager sense of self I had was tied up in being Gadget’s partner. He needed me. We were a team. He was not resentful about doing things for me, and it was my mission in life to save him, to keep him alive. I believed that even if I didn’t matter to anyone else, I mattered to him.

And then he died, and part of me died with him. It was too much. I couldn’t bear it. Something in me broke.

When I sought out support, people kept telling me to journal about him and to “let my feelings out,” to cry. But I couldn’t. I physically couldn’t journal (by hand) for the most part, and when I tried, when I could type, I didn’t know what to write. Nothing came out — and I’m a writer! I tried to cry and nothing happened. I just felt blank. I felt empty. The other people on my dog grief list talked of crying every day, many times a day, and I’d think, “What is wrong with me? Did I not really love Gadget? What kind of cold-hearted freak am I?”

There were two times I connected to my grief over losing Gadget, and they were so horrible, I can’t describe it. It was like being thrown into a bottomless black pit. I felt like my heart was squeezed into the size of a walnut. The emotional pain was so bad, I wanted to die. None of this feels adequate to describe the experience. If my feelings were a painting, it would be Edvard Munch’s The Scream.

I couldn’t go back there.

So, for a long time, I just felt closed off and careful and scared. This was grief (the noun). Grief can take any form — anger, sorrow, numbness, depression, anxiety, a sense of unreality, etc.

My grief was mixed up with the judgements I’d internalized based on what people said when they were upset with me. I didn’t believe I could connect with anyone or open up to anyone because I thought I was a horrible, selfish person — that’s what my friends told me when they ended our friendships — and that if I revealed any of my true feelings, people would be disgusted and angry and see me for the monster I was, and they would leave me, too. And because I couldn’t grieve, I couldn’t feel Gadget. And because I couldn’t feel him, I couldn’t grieve him.

And now, things are different. They are changing. One big difference is that I’m not dying anymore; I’m less ill than I was. I also am not experiencing mental illness anymore, which is a tremendous relief, as it felt horrible to be in so much psychological pain and to not be able to trust myself or my perceptions.

The other thing that has changed is that I’ve been studying NVC. It’s hard to describe just what a huge impact this has had on my life. I started taking classes by telephone, taught by and for people with chronic illnesses and disabilities, about a year-and-a-half ago, though it feels longer. The biggest gift, at first, was that I had friends again. I was part of a community, and I wasn’t a freak or “too needy.” Everyone in my classes had really tough lives; many of them were in worse situations than me. I often felt helpless and heartsick at what they were going through, but I also appreciated that I had something to offer, that just being a supportive presence was something. It felt good to be contributing to other people again. Also, I was shocked to discover that people seemed to like me. For quite a while I thought I was hoodwinking them into thinking I was a nice person. Eventually I started to think I might not be the monster I thought I was.

Then, as I practiced NVC more, I started learning how to apply it to myself and others. NVC is about empathy and compassion. It’s about learning to recognize judgements of ourselves or others and how to translate those judgements into an understanding of ours’ or others’ feelings and needs. I started to realize just how much I judged myself — all day, every day. I started to be able to give myself compassion. I started to be able to accept others’ compassion for me. Very, very slowly, I have been able to communicate better with the people in my life, to be less triggered, to take things less personally.

A turning point came for me on October 2, 2011. There was a 50-hour-long NVC empathy phone call. It was international, in celebration of Gandhi’s birthday. I would call in and mostly listen for a couple of hours here or there, but I felt a need building in me to be heard, to express the grief that was rising up in me. Eventually, I felt like I could hardly breathe for choking it down.

I asked for empathy from these people who were strangers, from all over the world. I was terrified of doing it, and yet I knew I needed to do it. It was a very vulnerable experience. I felt scared and naked and anxious. I was afraid they would all be disgusted by my neediness, that they would see me as selfish and pathetic. But I was desperate to share my grief.

I started talking about Norm and Gadget, and I cried and cried and cried. People made empathy guesses. People gave me support. Nobody judged me. Everyone was grateful to me. They thanked me for sharing myself with them. They thanked me for my vulnerability and authenticity. They were moved. Supporting me had met needs for them. I couldn’t believe this. I had to ask the facilitator, “Why?” How? How could my outpouring of pain possibly feel good or useful to anyone else? I don’t remember what she said, but I remember that I believed her. Through this haze of pain, although I can’t remember most of what I said, and even less of what was said to me, I felt like I was being given a second chance at life.

It was so hard to believe that I gave anything to anyone that night, and yet, everyone was being honest. Rather embarrassingly, I keep “running into” people on NVC teleclasses who remembered me from that night. Some people have told me that it was the session that touched them the most.

I have to believe them, because one of the aspects of NVC I love the most is the honesty. I have not run into any game playing. People say what they feel or need, even if it might be awkward or not in line with cultural norms of politeness, but in a way that is compassionate toward themselves and others. They are not being mean; they care about others’ feelings, but they recognize that their needs and feelings are nobody else’s responsibility. There is no blame. It’s like the anti-guilt trip.

That call was life-changing. I felt like a hundred pounds had been lifted off my shoulders. I knew I needed more of that. The opportunity to grieve in community.

That hour of sobbing my heart out to a big group of strangers has had a big ripple effect in my life. I finally believed I was on the road to grieving — the verb. To not just be mired in grief, but to take an active role in my grieving. It hasn’t been smooth or clear or easy. A lot of the time I still get stuck and shut down. It’s taken me quite a while to learn how to grieve, and I’m just beginning. I have so many things to grieve, it will probably take many years before I have touched it all.

For now, most of the grief that’s coming up is for Gadget and Norm. I am hardly ever able to grieve by myself. The exception is occasionally when I’m writing a blog post like this one, feelings will come up as certain realizations hit me when I type them. Mostly, however, I grieve with other NVC people. That feels safest to me. That is where I can express my sorrow and have it welcomed and held with tenderness. I get empathy and do not get judgements — no “shoulds” or suggestions or advice. Just deep listening and connection. And then, when I get off the phone, after crying my heart out, I feel good. I feel lighter.

I sometimes feel happy again. Not just okay, but happy. I had forgotten what it felt like. At the check-in for an NVC class a few months ago, we always give a feeling and a need we’re having in that moment. I was groping around for the feeling I was having: Peaceful? No. Calm? No. I couldn’t put my finger on it. It was . . . not unhappy. Then I realized, I was happy! I felt almost guilty announcing that!

This is one of those counterintuitive things I keep having to learn over and over again, all my life. To get to the joy, I have to go through the grief. After sobbing my guts out, I’ll be able to laugh.

I have not yet learned how to grieve by myself. I think I need to keep being in the safe space of other empathic people who welcome my grief to feel safe enough to be that emotionally raw. I am afraid of grieving by myself, because I know that abyss is potentially there, and I could fall in. With others, I feel held. I can let the wound bleed, but I don’t have to worry that I will bleed until there is no life left in me. I can just let the wound of grief be cleansed by the outpouring and let the scar grow back over it and feel a little bit more healed.

I celebrate that I am able to grieve, that I am able to connect with my feelings about Norm and Gadget — not just cardboard cutouts of feelings I imagine I should have. I celebrate that there are people in my life who are not just willing, but eager, to take these journeys into my heart with me. I celebrate that I am able to feel a fuller range of emotions now — joy and laughter and hope, along with sorrow and grief.

I think our culture is not comfortable with grief. It’s messy and unpredictable and raw. We don’t know how to “fix it,” so we try to shush it away. But really, it is a way to celebrate life — that we are still here to grieve. That we suffer is part of being human. So please, congratulate me — I’m grieving.

– Sharon, the muse of Gadget (very much alive in me as I wrote this), and Barnum, sweetest SDiT

P.S. If you are a person with a chronic illness or disability who might be interested in an introductory class on NVC by telephone, Marlena, my teacher, has spaces available. Contact information and a basic description of the class are here, although the dates and times are wrong. (This is an old listing.)

Insomnia and Creativity and Neuroatypy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Signal Boost: Telephone Support Group for People with Disabilities

I posted about this group once before. Apparently that garnered some interest, and the group proceeded. Now they are opening the group to more people again. Please share with anyone you think might be interested.

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

Join a support group by telephone

from anywhere in the country (or the world)!

Connect with others dealing with concerns similar to your own.

Boston Self Help Center, a small nonprofit run by and for people with disabilities and chronic illnesses, is offering a peer-counseling support group that is being held by telephone. The support group, which is made up of people with a range of disabilities and illnesses, has been meeting for several months and is now looking to add two or three new members.

Boston Self Help Center has been providing peer-counseling support groups in a cross-disability setting for over 30 Years. We charge on a sliding fee scale; you pay only what you can afford. Your fees help make possible the continuation of our support-group program.

If you are interested in learning more about the group, please leave a message for Linda or Cindy on Boston Self Help Center’s message line: (617) 277-0080 (voice/TTY).

Signal Boost: Migraine and Suicide

Kelly of Fly with Hope just posted Migraine and Suicide: What to Do when You Are in Crisis (Suicidal). Here’s the beginning of her post:

This week, September 4th through September 10th is the 37th Annual National Suicide Prevention Week. September also happens to be Pain Awareness Month.  In honor of National Suicide Prevention Week and Pain Awareness Month, I will be continuing the series I started with the post Migraine and Suicide. Please check in every day as there will be posts with contribution from the chronic Migraine and chronic pain community on topics related to chronic Migraine/chronic pain and suicide including how to cope when you are close to the end of your rope, personal stories from those who have been there, on suicide and faith, a post especially for loved ones (family, friends, caregivers) and links to other blogs/articles on Migraine and suicide.

I’m so glad to see this happening. The people I know who are chronically ill who committed suicide were people who were living with chronic pain. I think that when you live with uncontrolled severe and/or chronic pain, a sense of desperation and unbearable suffering is more common than not. I know many people who live with chronic or severe pain who are or have been suicidal, and of those I know who have killed themselves, most were in severe, chronic pain.

There are a lot of reasons to discuss suicide in conjunction with chronic pain and/or migraines. One reason is that the actual  physical  suffering can be so severe that people can become desperate enough to want to end their lives, or more accurately, to end the pain they’re in.

Another is that there are harsh, judgemental attitudes in our culture about both suicide and chronic pain/illness. When someone is suffering emotionally or physically or both, they may have internalized cultural messages that they are “weak” or that they are alone or that they are “selfish” to feel the way they do. This creates a barrier to reaching out for help and support. It’s crucial that we remove the stigma from talking about both suicide and chronic pain so that when we are suffering, we can receive empathy and kindness which will hopefully ease our suffering and provide options other than (or at least, in addition to) suicide.

Another reason is that chronic pain rewires our brains. It affects who we are and how we think and feel. Migraines, specifically, are a form of neurological disease. Migraines are thought to be a form of slow seizure. So it makes sense that often, during a migraine, emotions are altered or heightened. I know that during severe migraines my moods and thought patterns are altered. I often become weepy and anxious and think strangely. When the migraine has lifted, I often don’t even remember what I was thinking or feeling, or if I do, it doesn’t make sense to me anymore.

Flying with Hope will be posting links and resources for migraineurs, those with chronic pain, and those who are or who have been suicidal. She’ll be talking about feeling suicidal herself and linking to others with chronic pain who have. I wanted to let you know about these resources for any of my readers who are or have been feeling suicidal, as well as for those who want to pass resources on to others, or for those who have suffered the loss of a loved one to suicide.

Kelly is asking those who have felt suicidal to blog about it. I’m quite sick and exhausted right now, so I’m not up to saying much, but to try to help reduce the shame and isolation you might be feeling if you have struggled with thoughts of suicide, I want to let you know that I have been suicidal. I am not suicidal now, but for several months, when I was at my sickest, I was in excruciating physical and psychological pain, and I did research ways to kill myself. I didn’t tell anyone I was doing that because I didn’t want them to stop me. I was having pretty much round-the-clock migraines at the time, but I think the primary reason for my suicidality was neuropsychological damage caused by Lyme disease and bartonella infection. I did not know at the time that I had these diseases and that they could be causing these symptoms.

There have been other times in my life when I thought about suicide, but that was the worst time. I feel very grateful that I am not chronically psychologically altered and depressed anymore. I hope I never feel that way again. At least I have lived through terrible, terrible times and know it is possible for life to get better.

If you are feeling suicidal, please talk to someone who will be kind and supportive. If you don’t think you have anyone like that in your life, you can talk to these people any time of the day or night, for free, who are dedicated to providing support to people who are feeling suicidal:

National Suicide Prevention Lifeline contact info:

Voice/English: 1-800-273-TALK (8255)

TTY: 1-800-799-4TTY (4889)*

En Espanol: Red Nacional de Prevención del Suicidio:  1-888-628-9454

You can also get support and information at their website, suicidepreventionlifeline.org.

*When I was suicidal, most of the time I couldn’t speak and I couldn’t use my computer, so the only way I had to communicate was by TTY. I would really have liked to have known there was a dedicated TTY line for a 24-hour suicide prevention hotline. The only hotlines I found, I had to use relay, and you really don’t want to use relay when you’re in that state, believe me! People with speech or communication disabilities, Deaf people, and deafblind people experience suicidal feelings, too. Please pass on all the links!

A different, and unique, approach to the discussion of suicide is at Write Me! Leah Petersen’s blog, where the 5 Minute Fiction challenge is held. Another part of her blog is called Suicide Notes. Leah says:

Prompted by many debates on various internet boards, my own experiences, and the comments of others, I have decided to take on the topic of suicide.

I’ve been on both sides. I’ve lost someone very dear to me that way, and I’ve looked it in the face myself.

It’s an ugly, horrible, scary place to be. And it’s almost impossible to understand if you haven’t been there. So people hurt. And people get angry. And they get judgmental. And people don’t get the help they need. And people make attempts and…

Anyway, it’s hard even for me to articulate in cold, clinical terms this particular issue.

So naturally I’ll retreat behind a fog of fiction.

Therefore, I’ve taken on a new project. A collection of flash fiction pieces called Suicide Notes.

Please keep these resources for yourself and pass them on to others.

One note: Fly with Hope’s tagline refers to Jesus, but there hasn’t been anything remotely religious or Christian in the two blog posts of hers I’ve read about migraines, pain, and suicide. So, if you are not Christian, please don’t let this get in your way; I didn’t find anything “Jesus-y” in her discussion or in the resources provided.

– Sharon, the muse of Gadget (my best suicide prevention treatment), and Barnum, SDiT and antidepressant