Archive for the 'Mourning/Bereavement' Category

Two Years Later: Was Gadget the Perfect Service Dog?

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.

ADBC #10

You know what’s odd? I wrote most of this post over a year ago, long before I had picked out a theme for this month’s Assistance Dog Blog Carnival. But since I so often get ideas for posts, start writing them, get too tired to finish, and then forget them, I checked my drafts for “perfect” posts and found this one!

This is not the post I’d originally planned for this carnival, but in case I’m too sick/tired/busy to write that one, I’m posting this (instead of or in addition to the one I’d planned to write.) Enjoy!

The post below was originally written November 19, 2011. All I did to finish it was write an ending and do some editing.

* * *

Today is the second anniversary of Gadget’s death. I’m on a list for people whose dogs have died after undergoing chemotherapy for lymphoma.* It’s called the Lymphoma HeartDog Angels list (LHDA). We talk about anniversaries a lot on LHDA: anniversaries of birthdays or gotcha days, anniversaries of diagnoses, anniversaries of deaths.

When we are facing an anniversary, it often brings up memories of seminal moments in our dogs’ lives: the diagnosis, the decision to do chemotherapy, the dog’s last day. Stories of how these dogs came into our lives often touch me, such as Susan’s story about Freeway, whom she found abandoned on the side of the freeway. Susan picked her up in her car and they changed their lives forever.

Bettina fell in love with a shelter dog when she was a teenager and begged her mom to adopt him. But when they got to the shelter, they found that the sheltie mix had already been claimed. It turned out Bettina’s mother had applied for him already, as a surprise. Thus began Bettina and Niko‘s relationship, which lasted over seventeen years!

When I think about how Gadget entered my life, what strikes me is how much random good fortune played into it — how I blithely adopted this dog who turned out to be an excellent service dog and my heartdog — and I never even realized how high the odds were stacked against that until much, much later. I lucked into the perfect dog!

Not that Gadget would have been everyone’s perfect dog. Unlike his predecessor, Jersey, who was sort of the poster dog of winning over people who disliked dogs, Gadget was very doggy — and unschooled. Literally his first act upon entering my home was to lift his leg and pee on the clean guest clothes I kept in a basket by the door. Whereas Jersey never pulled on the leash, Gadget would run to the end of it and keep going. During his first week with me, he pulled my mobility scooter over onto me. He had phobias of round things (colanders, hats, outdoor garbage cans) and was wary of men, especially men in hats.

He was a drivey dog, a dog who needed a job, and I think things might have ended badly for him if he’d gone to someone who didn’t have the skill and patience and desire to put in the training to channel that drive. He wore me out with his need for physical and mental exercise. He taught Jersey that she didn’t really have to come when called. He chased all sorts of creatures, including adult black bears. He nipped my landlord, a male friend, and my dog walker, all during his first year with me. I nipped this behavior in the bud (ha ha), and Gadget learned that nipping people was counterproductive and would not bring the goodies that other behaviors did.

When I knew he was the dog of my dreams was when we started clicker training, especially shaping. The service skill I taught Gadget first was the first behavior I ever taught with a clicker: I had trained Jersey to shut the front door, and that was my clicker conversion experience. It was so positive and went so smoothly that I thought it would be a good first service skill for Gadget, too.

Here’s how I taught Jersey: I took some orange construction paper and cut out a circle and taped it onto the door at nose height. Click for approaching the target, then nosing the target, eventually wait for touching to turn into nudging, then harder nudges, then multiple nudges until the door was shut, then click for only some of the nudges it took to close the door, and finally click only for the closed door. When this was solid, I removed the target and clicked for shutting the door without it, which required going back a few steps to reintroduce nudging the door with no obvious target. With Jersey, this process had taken five days of three short sessions per day. I had been very impressed with that!

I intended to follow the same lesson plan with Gadget, but he had other ideas. I put the target on the door. Gadget immediately went to sniff it, and before I could even click him (I hadn’t expected him to orient to the target so quickly since we’d never used one before), he touched the target. I clicked that. He touched it harder. Click. He nudged the door shut! I gave him a jackpot.

When I opened the door again, he started nudging right away, and it only took two or three clicks for him to shut it again. He was so excited that if I held off on a click, he’d try pulling off the target to retrieve it. So it ended up on the floor. Even without the target, he kept orienting to the same spot on the door and within a couple of clicks the door would be shut.

“Well,” he must have been thinking, “obviously the object of the game is to shut the door. Why didn’t you say so?” Because very soon he switched to using his paw — much more efficient without all that nudging business. Within three minutes of beginning the game, I could open the door and have Gadget shut it, over and over again, with just a single click when the door latched.

Gadget, in other words, was a conceptual thinker, which I’ve been told is unusual for dogs. Thus, I managed to train him to do several skills without really providing all the details most dogs would need; I learned to expect these mental leaps and became what is known in training parlance as a lumper. Gadget would quickly grasp what the end goal of the behavior was and just do whatever worked to get there. For example, when I taught him to go find Betsy to bring her a message, and he was confronted with her closed door, he decided all on his own to bark at her door (which Betsy was not thrilled about). I had not realized how special this was. I just thought, “He’s problem solving. He’s got a brain, and he’s using it.”

When I recently told this story to a friend who has trained numerous service dogs professionally, she said, “That’s a dog on a mission!”

It was Gadget’s gusto and independent mind that I loved so much. A smart dog who has been given tools and taught to think for himself is a joy — and a nightmare. After teaching Gadget how to open the outside door to let himself out to relieve himself, one day I discovered the front door open, cold air filling the house, and no Gadget to be found! He’d realized that if he could let himself out when I told him to, he could also do it when he decided to!

I called him, and he came in. I vowed to keep a closer eye on him. He managed one more “escape” before I realized he was gone. The third time he tried it, I caught him in the act. He sauntered to the door and began to open it. I told him, “No!” very sternly, and that was the end of it — until the last year of his life, when he took to letting himself out to find me if I went out without him.

* * *

It’s odd. Grief and memory distort; they magnify some things, blur others. Even though after Gadget died I was lost without him, and I still couldn’t imagine Barnum achieving the number of service tasks or the level of support Gadget provided, I still didn’t realize how exceptional Gadget was.

Not that I didn’t remember how special he was to me, how important. I remembered our perfect moments: When the humans didn’t know I was asking them to shut the door, but Gadget did. When he woke me up when the timer went off and I had food on the stove I’d forgotten. When he alerted me that I’d left the sink on and flooded the bathroom (even though I never trained him to do that). When a stranger came into my home at night and Gadget stayed by my side, barking and ready to attack, but followed my cue to down and stay instead.

I also remembered his “flaws”: that he never completely adjusted to the move to a home with other houses and cars on it, that he worked much more eagerly if he knew I had cheese with me than if I didn’t, that he would get so excited to do a task that he’d get sloppy.

But these were not the moments that made me miss him so much, that left me feeling utterly lost and broken, like a part of my body had disappeared with him. It was the dailiness: Letting himself out. Bringing me water from the fridge. Waking me up so I’d take my medication. Carrying messages to others in the house. Turning off the lights when I went to bed. Opening the doors. Carrying groceries from the van to the house.

Yet, I always thought, “We could have done better. I didn’t train him to real stimulus control on many behaviors. We were never free of the food reinforcers.”

Sometimes I’ve thought that I built him up in my mind to be more perfect than he really was. Especially as I became a better trainer while working with Barnum and achieved levels of consistency and proficiency that Gadget and I never had, I’ve wondered, “Was it really that Gadget was so amazing and special, or was it mostly that he was the service dog I needed to get the basic job done? Was it really more that I lucked into adopting a dog who learned solid public manners, assistance skills, and loved to learn — despite the issues he had when he arrived?”

Then, a couple of weeks ago, I came across something I thought was gone forever — the one video I had of Gadget. Betsy and I made it the year before Barnum got cancer, and a friend of mine put it on Youtube, divided into two parts. A year ago, that friend closed his Youtube account, and I was so sad that I had lost this tangible proof of who Gadget and I were together. Then, when I was captioning videos for a recent post, I discovered that I’d posted and captioned the videos of Gadget before they were taken off Youtube. (You can see them here: Gadget and Sharon Part One and Gadget and Sharon Part Two. Or read the transcripts: Part One and Part Two.)

When I watched them again, I saw something I hadn’t seen before. I wasn’t focused on the skills themselves or on all the mistakes I saw us making. Instead, I noticed his gusto. He was so eager, motivated, and engaged. Yes, it sometimes took two or three tries to get something right, but he was determined.

He was, indeed, a dog on a mission.

It is good to be able to miss him for who he was and not for his supposed perfection or flaws. It’s good to see this side of him that I loved so much, preserved for me to celebrate and mourn. A dog on a mission to work, to keep playing the game, and — let’s face it — a dog on a mission to earn cheese.

-Sharon, the muse of Gadget, and Barnum, SD

*I’m one of the few people on the list whose dog did not actually die of lymphoma. Gadget’s chemo was effective for lymphoma, and he was in remission. Unfortunately, he developed mast cell cancer four months into his lymphoma treatment, and that is what killed him six months after he got lymphoma.

Three Years Ago Today

Gadget died, November 19, 2009.

Gadget lying on his front on a brown couch, his chin resting on a red quilt on Sharons knee. Sharon -- bundled in a turtleneck and hoodie -- has her hand on Gadgets neck and is smiling a little fixedly toward the camera.

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

Supporting the Bereaved: Light a Virtual Candle

As part of my series on support for people who are coping with assistance dog loss, I wanted to share a very simple resource that can be appropriate for a wide range of people and circumstances. I learned about it from Lymphoma HeartDog Angels list.

Gratefulness.org is an international website that allows you to light a virtual candle for any reason. It has an understated warmth that I find comforting and conducive to self-connection. You can light a candle for yourself or anyone else who is going through a rough time or a celebration, to let them know that you’re thinking of them, to commemorate an event, as a memorial, or for any other reason.

I have found it to be a simple, yet meaningful way to reach out. The reason I think it’s a particularly useful resource for assistance dog loss is that so often people don’t know what to say to someone who is grieving. Our culture has a hard time dealing with grief and death in general, and when it comes to deaths of nonhuman loved ones, it gets even more dicey. Add to that that often people who are sympathetic to pet loss don’t understand the differences between pet loss and assistance dog loss, and words can sometimes feel like more of a barrier than a bridge (though I am putting together information on what you can say or do when someone you know is dealing with assistance dog loss).

Meanwhile, if you are so inclined, you can light a virtual candle in honor of anyone or in memory of loved ones — your’s or others’ — that will “burn” for 48 hours. The website gives you a pause screen to reflect before you light the candle, and you can also include a note, as well as send the link to the bereaved if you’ve lit the candle for them.

Although there is never any word or gesture that works for everyone, lighting a virtual candle appeals to me for several reasons. First, lighting candles are part of most religious or spiritual traditions, so it can be an evocative offering for people across a wide range of religions and cultures. However, there are no prayers or religious or spiritual texts or symbols on the site, so for people who are atheists, it can still be a way of saying, “I’m thinking of you” without foisting unwelcome religious messages on someone who may not share your beliefs.

Also, since these are virtual candles, they are not creating products of combustion. As someone with multiple chemical sensitivity (MCS), I can’t be around real candles, and I don’t like it when people tell me they will light a candle for me because even if they are 100 miles away, I don’t want them to contribute to pollution in my name. But these virtual candles are smoke-free!

When I first heard about it, I thought it sounded hokey, but then when someone did light an online candle for Gadget, and I went to see it, I was moved. Not only is the site tastefully done, but the way the flames flicker is very realistic and calming, I find, and I like how the candles burn down slowly over a 48 hour period, so you can revisit the same candle as your feelings wax and wane. Mostly, though, it told me that someone cared. They cared enough to go and light the candle and think of me. They put something “out there” with Gadget’s name on it that I could visit. That is often what people want the most — to know that they, or their loved one who has died, matter.

– Sharon and the muses of Lady, Jersey, and Gadget

P.S. This is probably obvious, but in the case of some people who have lost a guide dog, a visual message, such as the candles at gratefulness.org, may not be enjoyable. However, there are many other ways of saying, “I am thinking about you, and I care.” I am preparing future posts on this topic.

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

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.)


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