Posts Tagged 'grief'

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

Flashback: Of Grief and Relief

I originally wrote this post on January 2, 2010. It’s one of several unpublished posts I wrote in the wake of Gadget’s death. I keep finding these drafts that are basically finished, but for some reason, I didn’t think they were complete at the time. My thinking was so fuzzy back then, I’m not sure what I thought these posts needed.

In this case, the original title, “Admission of Guilt,” suggests a pretty clear reason why I hesitated to post it. I’m glad that I can now grieve Gadget without feeling guilty about the complex feelings I experienced during his last days.

– SW

When the End of the End Doesn’t End

Gadget’s final week was an extension of the previous six months, and the dreams seem to be an extension of what I lived in those end days.

For about four months I fought with my brain, my body, my heart, and my bank account to defeat his cancer. I researched. I cooked. I researched more. I took him for chemotherapy, acupuncture, chiropractic, and Chinese herbs. I pilled him constantly and myself just enough to keep my exhaustion and pain sufficiently at bay to always take him for a walk, to always go with him to chemo, to always make sure he got the right supplements and medications with the right meals. Those were the days of hope, when I thought we would have at least a year, possibly two, maybe three or more.

Then, he took a turn for the worse, and I realized he probably was dying. Next were the weeks it was clear to me he was dying, but not to him. Finally, in the last week or two, he was actively dying, which was like all the months before, but brutally amplified.

Everything was more. More stress and anxiety. More effort to ensure each meal was delicious and totally digestible. More pinnacles of hope and plummets into despair. More pills and monitoring symptoms and needle sticks — all requiring more vigilance around and around and around the clock. More cleaning up messes that smelled of his body shutting down. More desperation to make him as happy as I could with trips to the pond, walks, doggy get-togethers, and to soak up as much joy as I could, myself, in his still being alive because every time we had fun or peace, I knew, “This might be our last time. . . Or this one. . . . Or this one. . . .”

I couldn’t shed months of habits overnight, just because there was no longer any purpose to them.

The first morning after Gadget’s death, I rolled out of bed, adrenaline banging through me, and began checking his status before I even realized he wasn’t there. I was ready: Had I heard gasping? Did I smell vomit? Was it time for pills or fluids?

What I was not ready for each morning was the nothing. Not only wasn’t he on his bed, he wasn’t lying in a cool spot next to the window or on the bathroom tile. He hadn’t wandered off in search of one of my personal care assistants to demand food and attention (not that much demanding had ever been involved — more like just showing up!). But, my PCAs hadn’t arrived yet because I should still have been asleep. There was nobody there. So there was nothing to be done. And I didn’t know what to do with that at all, because for six months, there was always more to do. More to try, more than I could do, more that made no difference in the end.

After taking in the nothing, I’d cry and go back to sleep.

Sleep was very big on my agenda the first few days after Gadget died because, in addition to the insomnia I have as a symptom of my illness, for the previous months, I woke up constantly to care for Gadget. During the days, I spent all my energy on two things: Gadget’s survival, and my survival (in that order). From the moment I woke to the moment I’d literally pass out from exhaustion, I was in the survival struggle.

In fact, for the first 48 hours after Gadget died, I mostly felt relief. I slept. I finally didn’t have to manage anything. I didn’t have to struggle against and fear the worst anymore because the worst had already happened.

Gadget napping on red quilt on couch.
Near the end, we both grabbed sleep whenever we could.

I’m fortunate to be able to admit this. What’s given me the courage is hearing it from other caretakers of a loved one with a long, terminal illness. It’s actually pretty common. However, it’s not an admission everyone wants to hear.

A year ago, I didn’t want to hear it from someone else. On January 6, 2008, Norm, one of my best friends, died after two agonizing years of illness. He often said to me, especially near the end, that he wanted it to be over, that he sometimes felt like it would be a relief to die. This was hard to hear, but I was sympathetic. This was because, along with understanding how it feels to be mired in pain and illness, I was keeping a promise I’d made to him a long time before, though he didn’t know it.

When Norm got sick, I committed to listening to and supporting whatever he felt. My goal was to be unconditionally loving and nonjudgemental. I think it’s the only time in my life I’ve succeeded at that.

Still, I didn’t want him to die. So, when he did, I was shocked and grief-stricken. It was a pure loss, which is what animal bereavement experts say is usually the case when a companion animal dies. They say that our relationships with our animals are usually so entirely positive, without the resentments, grievances, and other negative complications of our human relationships, that the loss is often more painful than a person’s death. I have recently heard from others whose dogs died of cancer that their grief and suffering is worse than when they’d lost a parent, a sibling, or even a child.

Norm was a dog person. He also shared my gallows sense of humor. At his memorial, I said that Norm would appreciate knowing that, to me, his death was as upsetting as if he was a dog.

This was not true for his wife, who also is disabled and with whom I was also friends (though not as close). His death was a terrible loss and a tragedy for both of us, but she had spent two years of physical and emotional agony taking care of him. I was protected by the distance of the phone line. His death for me was pure sadness. For her, it was also a deliverance: a release from the horrors of watching him suffer brutally for so long, as well as a chance to take care of herself again and to regain some of the life she’d lost before he got sick. I couldn’t stand hearing this from her. Her grief was complicated, and mine was straightforward. I didn’t want there to be an “upside” to my friend’s death.

Since Gadget’s death, I have a lot more empathy for what my friend was feeling last year. I have been met with silence, confusion, and outright denials when I mention the part clemency has played in Gadget’s death.

When he was dying, I went to an online anticipatory grief support group. When I admitted, with some guilt, “Part of me just wants it to be over.”

The host said, “That’s because you don’t want to see him suffer. It’s a completely unselfish feeling.”

I said, no, it wasn’t entirely unselfish. Seeing him suffer was horrible, and that was certainly part of it. But, I said, I was suffering too. I was exhausted, a physical and emotional wreck. I’d dug deeply into savings that I live on. The toll was enormous and seemingly endless. I wanted it to be over for me, too. I didn’t want him to be dead — not truly dead — but I also wanted it to be over.

The host continued to maintain that my only thoughts were of Gadget’s needs. She refused to hear the part of me that was saying, “I can’t take this anymore.” I didn’t mention it again.

Of course, when it was “over” — what we think of as over, his body buried in the ground — it was not, is still not, remotely over. I got my two nights of sleep, but they were laced with nightmares for far longer. And the grief, in one form or another, goes on and on. I’ve been told that in some ways, it will never be over, a thought that is depressing, exhausting, and strangely comforting. I guess because it means Gadget will always be in my life, in some form, even when that’s only in grief. . . .

I reach out for him to feel where his fur should be. I look to the foot of the bed, where his head should be lolling over the side. I listen for his snore, rumbling over the white noise of the air filter. I glance instinctively to the door, the light switch, the pillow I’ve dropped on the floor, for him to shut the door, turn off the light, pass me the pillow.

Gadget at a distance in a large pond.
At times, he feels beyond my mind’s reach.

For six months, I applied every life-affirming “treatment” I could. I didn’t just take him to chemotherapy every week, even when I could barely leave my bed the rest of the time. I didn’t only research and dispense herbs and supplements, create a special cancer-fighting diet tailored to his food allergies, consult a multitude of veterinarians and read multiple books on canine cancer. I took him on special walks — varied our routes, went to his favorite destinations (and pretty well killed my powerchair in the process). Even teaching him new service skills and relying more on his assistance felt like a blow against cancer, as if I was tethering him to life that much more tightly. How could such a necessary bond ever be broken?

More importantly, I tell myself that I still exist and matter. After more than eight years living as a “we,” a partner, an interdependent unit, an extension of another, I’ve become disembodied. The only thing that has ever been mine alone is writing. No matter how many people offer critique, proof or edit, type or transcribe, publish (or reject) a piece of writing, it is still a solitary act.

I was a writer before Gadget. After he entered my life, I often wrote to escape the demands of his training and exhausting exuberance. As the subject of some of my humor columns, I transformed scary, frustrating, or painful events with a wild young rescue into emotional release — and paychecks. Even when he curled up under my desk as I typed, the true connections happened in my mind. Writing has always been where I find myself, whether I want to or not.

– Sharon, the muse of Gadget, in the days before Barnum

On Grief: It Helps When You Say…

I recently wrote a post about how much I’m grieving, how sad I am. Writing the post, itself, was a very important step for me. It was cathartic, and there was something about being able to say in a public forum, “I am hurting,” that was healing. I got some responses I found supportive and helpful.

I also got some responses that triggered feelings of anger, frustration, and loneliness. I wished I had never read or heard these comments, but since I had, I wavered about how to respond to them. Part of me wanted to ignore them. Another part of me wanted to respond by indicating that these responses were not helpful because I wanted to head off similar comments.

Part of me wanted to respond with a snarky post, such as a bingo card (which I still might do for other reasons or on other topics, because I love them so much — see examples here, here, and here. Oh, and what the heck, some nondisability bingos here). However, I am studying nonviolent communication (NVC), which has really changed my perspective on communication and how I try to communicate; I have learned it is often much more helpful to tell people what I want than what I don’t want. I was trying to think of how to respond in an NVC way and finding the mere idea baffling and exhausting.

Then I read this amazingly thoughtful post by Lisa Bonchek Adams about a list that appeared in the New York Times of what not to say to someone who has cancer. Lisa agrees with some of the listed items and not others, but her main point is that she never made a list of what to say or not to say for some very specific reasons. Her reasons make so much sense. (The comments from her readers are also full of terrific insights.)

One reason she gives is that people are already nervous about how to respond to someone who is seriously ill (and I would add the same is true for those going through any sort of crisis or who express strong “negative” feelings) and worry about saying the right thing. By telling people what not to say, you are contributing to that nervousness, which increases the chances of them saying nothing, which is often the worst thing.

Second, she says it really makes a difference who is saying it to you and how it is said. I absolutely agree. For example, I usually hate getting unsolicited advice from most people. However, sometimes suggestions are welcome if it’s someone I am very close to who is also chronically ill.

Third, she says the most important factor is that the person’s expression is honest. There is a lot of truth to this, although I don’t agree 100 percent. I don’t always want to hear someone’s honest thoughts, feelings, or opinions, either, depending on what they are, but better at least that they say something heartfelt and honest than that they present a platitude.

I strongly encourage you to read the post and the comments.

This topic is going to keep coming up here, not just because I will always be chronically ill, but because right now I am finally unearthing my feelings of grief that have been “frozen” for several years. I have a lot to grieve: my service dog’s death, one of my best friend’s death, the deaths of other friends, the “parting of ways” of my two very closest friends and several other friends, the multiple and devastating losses that have accompanied my new disabilities and illnesses associated with tick-borne disease, and more.

Some of these losses happened during times when I was literally struggling to survive. I didn’t have the luxury at that time of grieving. Then, there were losses that happened so close together that I was completely overwhelmed, unable to process any of them (such as the three-week period where I went through a PTSD-inducing natural disaster, my best friend stopped speaking to me, one of my other best friends died, and my therapist terminated with me against my wishes and with no referral).

I was numb. That was how my body/mind enabled me to survive — numbness. I didn’t have a choice, nor should I have to defend how I coped, but I found that when I was honest with people about being numb, their response was usually to tell me not to feel that way.

Lots of people told me, when I was dealing with some of the more public losses, such as Gadget’s death, that I should cry, I should journal, I should let my feelings out. This was beyond unhelpful. For one thing, I wasn’t able to do these things. Everyone grieves in their own way, and usually the best you can do is to just follow where your feelings lead you and try to honor them.

I actually tried to force myself to feel, to cry. It didn’t work. I couldn’t do it. I was still numb.

My therapist told me that there was a reason I was numb, and that it’s a normal way to grieve, and that I would be doing myself a kindness to accept that this was the coping mechanism I needed to survive. She also encouraged me not to spend time with people who told me I was grieving wrong.

The other problem with telling me I shouldn’t be numb, that I should cry, etc., is that they laid a burden of guilt on me. Instead of hearing compassion and understanding, I heard judgement: “You should cry. You should journal. You should let it out. Because you’re not grieving this way, you’re grieving wrong.”

“Should” statements are never helpful. Really. Even if you are offering a heartfelt suggestion and have been given permission to offer advice, don’t use “should.” Use, “I have found that it helps me to” or “have you considered?”

Now, I am having my feelings and expressing them. I am crying. I am feeling sad. I am also feeling angry, frustrated, hurt, lonely, and all sorts of other permutations of pain. This is because I am grieving. Grieving can encompass any emotion, and it can come at any time after (or even in anticipation of) a loss. There is no right or wrong time for grief; it happens in cycles, in stops and starts, over short periods and long.

The irony is that I am finally doing what all those people told me to do in the last several years, and I’m hearing negative reactions to this, too! I’m being told to buck up and look on the bright side and move on. I feel really angry about this.

All of this has led me to think: “What do I want to hear when I am expressing suffering or pain? When I am grieving, whether it is in a way that is perceived as acceptable or not? When I am numbed out or when I bawling? What have been the most helpful comments people have said on the phone or posted on my blog?”

The answer is that I want to know that my feelings are welcome. That the other person wants to listen. That they are okay with whatever I am going through. That I can just express myself without having to worry about their needs for the moment. That they care.

“Thank you for sharing this with me,” and “I’m so glad you told me,” are two examples of comments people have made that felt very welcome. I just feel a sense of opening and relaxing and relief: “Okay, it is safe to share with this person. I can be myself. I can even test out if I can say more.”

“I appreciate knowing what’s going on for you” or similar permutations indicate that the feelings I’ve already shared have been heard and received and held tenderly. They also suggest that it’s okay to share my feelings or experiences again. I think I particularly need that latter message, “I am open to your expressions of pain; it is not too much for me,” because so many people abandoned me in the last few years, and the message I internalized from these abandonments is, “Your distress, and the way you express it, is wrong, bad, and too much. You drove me away with your overwhelming feelings.”

I think that’s another reason I’ve been numb for so long. After hearing the message so strongly to shut up and not burden people with my pain, numbness was a self-protective mechanism.

Having other people tell me not to be numb didn’t help, because I just filed it away under, “More things I do wrong that drive people away.”

Telling me, “Thank you for opening yourself to me. I will hold what you say with care. You are welcome to come back to me and ask if you can share more of your feelings,” helps me feel brave enough to try to open up again.

Enough of you have said often enough in your comments that you appreciate what I say, that I have the courage to write this post and others like it. That I am able to keep trying again. Thank you for that. It has meant more than I can say. It has meant that I am finally able to feel wretched and sad and grief-stricken. This is truly a gift.

– Sharon, the muse of Gadget, and Barnum, SDiT (who gave me lots of kisses today)

May 12: Ugh

Lately, I’ve been feeling kind of blue, and while I have some pretty decent reasons to be depressed (the possible end of my relationship with Betsy; the possible end of Barnum’s service dog career; the random bouts of vomiting; the pain, exhaustion, and migraines; the fact that my outdoor powerchair is once again completely dead), I’ve been through worse. The weight of my gloominess seemed out of proportion to what is actually going on. It felt like the bad stuff felt worse than it really was.

Eventually, some pieces started to fall into place. I realized that a lot of it is grief.

The first wave hit when I got a recent batch of books on tape through the Library of Congress Talking Book Program. (I love the Talking Book Program — if you have any sort of physical or cognitive print disability, definitely check it out.) On the same day, two books arrived, bringing with them an emotional sock to the gut.

One book was U Is for Undertow: A Kinsey Millhone Mystery, by Sue Grafton. The other book was Fearless Fourteen (Stephanie Plum #14) by Janet Evanovich. Both of these are the latest installments in series, so I was excited to see them in the catalog. I didn’t think at all about how I’d feel when I started listening to them.

My former best friend, who “broke up with me” a few months ago, introduced me to the Stephanie Plum series. They are really funny books. They literally make me laugh out loud. Probably the only other author who does that is David Sedaris.

When I was reading a Stephanie Plum book, I’d call my friend, and we’d talk about our favorite parts, reciting lines to each other. It was always fresher in my mind than hers, because she got print books, from a regular library, so she could read them as soon as they came out, whereas it usually takes at least a year for them to be recorded. But still. Forever more, I will associate the characters, the New Jersey accents and locales, and the ridiculous situations of the Stephanie Plum books with my friend who I love and miss and will never speak to again.

Sharon ten years ago, with very long, dark hair, and a big smile, sitting on a couch next to a person in a blue sweatshirt whose face is blurred out.

I had to make her anonymous for this public blog.

The other book is even more heart-breaking, in a way. My dear friend, colleague, mentor, and former boss, Norman Meldrum, liked the Kinsey Millhone series. Norm got very ill in May, 2007, just a couple of months before I was diagnosed with Lyme disease.

A ruddy-faced man of white/Native heritage stands in the snow with a small dog on a flexi-lead. The man wears a tweed cap, tinted glasses, a brown carhart jacket, and gray baggy pants. He has a white beard and mustache and stands a little stiffly, his hands curled under, a stoic expression on his face. The dog is a Havanese, about 12 pounds, with curly white hair. She is stairing at Norm quizzically. They are surrounded by smooth snow, a lawn presumably, and in the distance behind are evergreens and treeless deciduous trees.

My friend, mentor, colleague, activist Norman Meldrum, with Beatrix Underfoote

It was actually in May that he ended up in the hospital with what turned out to be multiple pulmonary embolisms, caused by a medication he was on for one of his disabilities. It took the doctors a long time to figure out that that was what was wrong, though, because almost nobody ever gets multiple embolisms and survives. For the first two hospital stays, the doctors thought it was some form of treatment-resistant super-severe pneumonia.

In fact, the friend who stopped speaking to me lost her husband to one pulmonary embolism in the space of an hour, a few months before Norm went into the hospital. Norm’s doctors and nurses all told him, again and again, how lucky he was to be alive. That got old really quick. Particularly because not too  long after all these pronouncements about his luck, he was dying a slow, agonizing, painful death.

When I found out Norm had been in the hospital and almost died, I was shocked. Then I got Lyme. Then Norm went back into the hospital. Then I got sicker.

We both kept getting sicker and sicker, until around two years later, I began to turn the corner, and Norm died. During most of those two years, I’d call him at the hospital or at his home, and we’d talk until one of us was too sick or tired.

Almost never was I able to speak to Norm using my voice, because I developed vocal-cord apraxia due to Lyme and babesia. So, when he was in the hospital, I called him by HCO relay, which was a real pain in the ass. A lot of the time, there were technical issues and garbling, but Norm was very patient. I sent him a TTY to use when he was at home, and he was one of the very few people in my life who was willing to use it. Unfortunately, by the time I had a TTY to send to him, he was usually too sick to operate it.

The irony is that we had such a close, loving relationship, even though we’d only ever spent time “in meatspace” twice. All the rest of our communication was by email, and then, when we both got so sick, by TTY relay.

The worst irony is that I started to get better right after he died. At his memorial service a few months after he died, I attended by speakerphone. I hadn’t known if I’d be able to speak for myself, so I had written what I wanted to say and emailed it to someone else, in case they’d need to read it. But I was able to speak. I actually felt guilty about that, because I hated that I could talk about him, but I hadn’t been able to talk to him.

I miss him so goddamn much.

It’s not just that we both read the same author, either. It’s that this was a series (starting with A Is for Alibi), and the last book that came out while Norm was alive was T Is for Trespass. I read it before him, and it gave me the creeps.

The book is about an older man who is abused and gas-lighted by his attendant. At the time I was reading it, Norm was in and out of the hospital a lot. He was at other people’s mercy a lot. When he ended up at one of the worse facilities, I worried about how they were treating him.

As it turns out, I should have been more worried than I was. This “nursing home” that Norm went to before he died was not a place he chose. He had to go for his insurance to pay for his previous round of hospitalization, and though he knew he’d be dead soon, he didn’t want his wife and children financially destroyed by his medical bills. I had a feeling things weren’t good there, just from the limited things we managed to say when I managed to speak to him. But I wasn’t able to talk to him there more than once, and briefly, which worried me, in itself. The staff seemed really weird about giving him a phone. I didn’t like it, but there was nothing I could do.

I found out after he died that the staff there abused him. They taunted him, told him he wasn’t really sick, that he was faking, while he was dying. They’d put his wheelchair too far away and make him try to get to it on his own. They’d pretend they were going to support him and then, whoops!

He worked so hard to get out of that place. I knew it was bad, that he wanted desperately to leave, but I didn’t know how bad. My stomach turns over whenever I think of it. I feel such helpless rage.

I was already thinking of Norm when I read the previous book in this series, and I said to him, “You might not want to read this. It’s pretty intense.”

Then, he read it, and he said it didn’t bother him.

Then he ended up in that hell hole of a nursing home. Then he went home, we talked a couple more times, when he could barely stay on the phone a minute, and then he died.

Sharon is standing in a parking lot, adjusting the tubing on her oxygen cannula. Next to her is her large, 4-wheeled mobility scooter. In the foreground of the picture is Norm, sitting in a lightweight wheelchair with an electric blue frame. He is facing mostly away, so we see his side, back and profile. Hes wearing a tweed cap and glasses, and has a white fringe of hair under the cap and white beard. Sharon is wearing a very bright, lively red wraparound skirt with yellow flowers and a black, long-sleeved top. Her dark hair is very long, swept to the front. Between Norm and Sharon stands a young, distracted Gadget, in a summer haircut. He is not wearing any gear, just a rainbow collar and a black leash. He is standing splay-legged, looking into the distance.

A happier time, May 2003: Norm, Gadget, and I congregate in Augusta, Maine, long before Norm's emobolisms, my Lyme, or Gadget's cancer.

Now the series  has continued without him. That’s the part that really gets to me. Here’s “U,” and next will be “V” and on through “Z,” and Norm won’t be around to read any of them.

So, here I am in the lovely month of May, with trees budding, the birds returning, the days getting longer, and May is the month that I got bitten by the tick that gave me Lyme. May is the month Norm started the long, slow process of dying.

Then, two years later, May 12, 2009, Gadget was diagnosed with, and started chemotherapy for, lymphoma. He actually went into the emergency vet on May 9, a Friday. Something looked wrong with Gadget’s eye, and I went debated whether he should go to the ER or not. It seemed worse, it seemed better, then it seemed worse again.

My voice wasn’t working, and I couldn’t get out of bed. I remember having a long conversation with Betsy by TTY about it, because she didn’t understand what was so worrisome, and why I was debating taking him to the ER versus waiting and taking him to his regular vet on Monday. I didn’t like sending him without me. I have had bad experiences with vets screwing up because I couldn’t be in the hospital with my dog. Like the vets who misdiagnosed Jersey’s glaucoma repeatedly, costing her one of her eyes.

But, eventually I decided he needed to go. I talked to the ER by relay ahead of time and told them all my questions and concerns and asked them to call me as soon as they’d examined him. Then, my PCA did take him to the ER, and they called me by relay and said, “It’s a good thing you brought him in. Gadget has lymphoma.”

A close-up of Gadget's face, turning to look over one shoulder, covered in a bright-orange vest. His muzzle is wet, his beard dripping water. His ears are cocked. In the background are blurry green leaves.

Though I love this picture of him, I can't help but notice the ring around his iris, part of the change to his retina, vestige of lymphoma.

Because I was on relay, the vet couldn’t hear me crying. I was totally in shock. They ran thousands of dollars of tests to determine for sure that it was cancer and to stage it, and to rule out other diseases (which turned out to be important, because Gadget had an extremely high Lyme disease titer, which we were later able to treat). Even though the results wouldn’t be in until after the weekend, we took the next available appointment with the oncologist that they had, which was Tuesday, May 12.

On Monday, May 11, I called to find out if the needle aspirates showed lymphoma, and they said they did. I had already started researching canine lymphoma the previous night. I went to our first oncology appointment armed with a dozen questions. Even though the vet answered them all very thoroughly and kindly, I really had no idea what I was in for.

As with Norm, at first Gadget seemed “lucky.” He responded to chemotherapy right away. He went into remission within a few weeks, and — combined with treating his Lyme disease — he seemed to have been granted a reprieve. He was working and playing — and eating better than he ever had in his life!

Gadget, with gray, very close-cropped hair, sits with his tongue hanging out, looking at Sharon. He has a tiara of curled ribbons of many colors on his head, with a big bow in the middle. Behind him is a blue kiddie swimming pool, filled with water. Sharon sits in her powerchair with black sunglasses on, one hand holding a cake in her lap that says, "Happy Birthday Gadget" in peanut butter and biscuits on white icing. With the other hand she is gesturing to herself as she talks to Gadget. In the background is a green lawn and people in lawn chairs.

The birthday boy awaits cake. This was a very good day.

Then, luck took a turn for the strange — Gadget got a second cancer, mast cell cancer. Initially, it was deemed cured by surgery, and then, like Norm, one thing after another started going wrong. In fact, like Norm, the problems showed up in his lungs, with what seemed to be pneumonia. Then it turned out to be more than pneumonia — pneumonia caused by mast cell cancer raging throughout his body.

Then, it just became a matter of trying to take the best possible care of him I could, until the end. Sometimes it seems like life is just a long series of losses, a war of attrition. Or maybe it’s just the time of year.

I keep telling Barnum he is not allowed to get sick. He is not allowed to die.

– Sharon, the spirit of Gadget, who was ready to go, and Norm, who was ready to go, and Jersey, who was ready to go, and my anonymous friend, who didn’t tell me the reason, and Barnum, warm, furry body and wet tongue and beating heart and possible SDiT

Birth, Death, and Dreams

I’m having the dreams again.

The death dreams. They started the morning Gadget died and lasted every night for a week. Then they went away for six weeks, until right before the puppies were born. This timing seems backwards — the punishing sadness of death right when I’m so elated over new life — but what I’m learning about grief is that often feelings that seem to be the opposite of what they “should” be are actually flip sides of the same coin.

As I mentioned last week, I’m planning to raise and train a successor to Gadget. I’ve had my eye on a very special litter of pups that was to be born New Year’s Day.

5 newborn pups lying in a pile

Will one of these tiny newborns become my next service dog?

But the litter arrived two days early. Maybe there’s a puppy as eager to meet me as I am to meet him? I got an email from the breeder December 30 that seven bouncing baby bouvs had arrived — five boys (picture above) and two girls. I’d been eagerly anticipating this litter since before I knew Gadget would not be here to help me raise the pup. When I heard the puppies had indeed arrived — and early! — I was goofy with excitement. I’m already stockpiling adorable supplies.

newborn puppy's head held in hand

Could this be the one?

Puppy Love, Puppy Loss

The song, “Puppy Love,” has such a happy title, but it’s actually a lament. I tasted that — lay down to sleep that night, anticipating puppy pictures, and was jerked awake three hours later to a “Gadget death dream.” The dream was about this blog.

In the dream, I was working on After Gadget, but Gadget was still alive — and dying. I’d received angry comments to a recent post. Apparently, I’d wronged someone’s aunt (it was a dream, after all). It felt vitally important that I make things right in this mythical blog. Meanwhile, Gadget was in his decline; he should have been my priority, and I felt tortured that I was neglecting him. I was struggling to simultaneously cure the blog problem and take care of Gadget’s every need.

I woke up with that awful, shaky feeling, looked for Gadget at the foot of my bed, and remembered that, of course, he wasn’t there.

Immediately after Gadget died, every night, for a week, I dreamed that Gadget was dying and needed me terribly, and also that he was dead — both felt equally true. Every morning, I jerked awake to check his breathing, his heart rate, make sure he hadn’t vomited, give him his next dose of pills. Yet, I woke up heavy with the sadness of his death — chest tight and eyes itching with tears.

Here’s where the flip sides of the coin comes in. While these two ideas seem contradictory — “Gadget’s dead,” and “I need to help Gadget now” — in fact, I think my grief-addled brain equates them. The overriding feelings in the dreams are equal parts heartache and urgency. Instead of, “He’s dead, therefore he’s beyond my help,” I land on, “He’s dead, therefore I must act now to bring him back.” The knowledge of his death actually heightens the emergency. If I can only act fast enough, do exactly the right thing, I can erase his death.

A Lifestyle of Rescue

Gadget was a rescue in the usual sense — a dog who’d been thrown away, essentially for being a dog — but I didn’t just rescue him by adopting him. I continued to rescue him from health problems from the moment he arrived with chronic diarrhea and skin problems, to stopping his heartworm medication when I realized it caused him seizures, to diagnosing his thyroid condition myself when the vets missed it. I spent eight years working to keep him healthy. Then, he got lymphoma, and I spent six months completely obsessed with beating his cancer — with saving him once and for all.

I look back at photos from our first year together.

Black and white photo, sun highlighting Sharon and Gadget's eye contact

When Gadget was not yet two . . . and I was nowhere near 40!

We both looked so much younger and healthier than in the pictures from recent photos, even when he was in remission. I wasn’t even aware that struggling against Gadget’s health problems was as much a part of my lifestyle as trying to adjust to my own illnesses. Now, not only have I lost my best friend, assistant, and around-the-clock companion, I’ve suddenly and extravagantly failed at what I’d devoted myself to for almost a decade: keeping Gadget, and our partnership, alive.

My rational mind knows I did everything I could; but what I think I know and what I actually feel have very little to do with each other. For example, I know that death is permanent. I don’t even believe in an afterlife. Yet I keep looking for Gadget. On the rare occasions I break down and sob, what I ask myself, over and over, is “Where is he?” I am literally and figuratively still looking for him, only most of the time, my (rational) mind pretends otherwise. Most of the time I don’t cry because I don’t truly believe he’s gone.

My heart — or, if you prefer, subconscious — is more honest. My dreams demand that I give Gadget what my deepest self awaits: a miracle.

See Right through Me

This makes “the blog dream” so transparent. Here, in my little internet domain, I have control. I decide the topics, the layout and photos, and choose each word. Where it mattered, I was powerless; I tried as hard as humanly possible to prevent this blog from coming into existence. I never wanted there to be an “After Gadget,” or not for a very long time. Gadget and my relationship had always been about creating safety, independence, and freedom for both of us, but in the end, I couldn’t give him the control over his destiny that he’d faithfully provided me his whole adult life.

My mind keeps falling for its own tricks, and old habits of trying to save Gadget die hard: As soon as I started blogging about the dreams, they stopped, because my conscious mind has taken over the work of my dreams. Day after day, I’ve written, revised, and edited this post. I type lying down when I’m too sick to sit up; I use the thesaurus constantly because my injured brain is too tired to find language on its own. I keep trying to get it right, pouring my energy into Gadget again. If only it can be perfect enough — then what?

The Difference

In canine cancer, there are just a few grains of fact scattered on a shore of unknowns. When Gadget was diagnosed, I had to cram years and years of research into weeks. I had to rely on unfathomable drugs, unproven supplements, controversial herbs, and vets who could never live up to my expectations of omnipotence and omniscience.

On the other hand, writing is my home. It is my center, my wheelhouse, and my sword. In fact, it’s really the only part of my life for which Gadget was not essential. (To give him his due, he provided fabulous fodder for several humor columns, but he was by no means my only subject.) Through writing, I personally convinced my federal representative to cosponsor a bill relating to Lyme disease, one of my disabilities. Through writing, I’ve escaped an inert body again and again to live a hundred characters’ lives. Through writing, I’ve earned respect and paychecks; I’ve knocked down doors not open to my corporeal body.

When I used to write, before Gadget’s cancer and my Lyme, Gadget sometimes curled up under my desk or rested his head on my knee. But we maintained separate worlds, followed our own minds.

The rest of the time, we maintained a constant connection. Even when off duty, running free at the pond, Gadget would turn and check on me. Was I still there? What did I want? Where were we going? He was always looking back at me.

Close-up of Gadget's face, looking back at the camera

The Gadget "Look"

Now that I’ve devoted this blog to him, will he appear, looking back over his shoulder, across the kitchen or the yard, along the street or between the trees?

A small part of me wishes it were so. But I know it’s no longer his job to seek me. It’s my job to eventually, somehow, stop looking for him; to show the world what he taught me; and hopefully, to find myself again.

This blog represents my baby steps. In every picture or video I sort through, in every sentence I craft, I recognize his focus and intelligence, his beauty, sense of humor, and quiet dignity. This work wrings the tears from me, because to think deeply about Gadget and what he meant is to feel deeply my love and loss for him. I can’t stay frozen in my denial when I write.

What’s been clear to me for many years is that Gadget made me a much better person than I would otherwise have been. Not just in my treatment of him or other dogs, but toward myself and other people. And although he was not necessary to my writing, I’m discovering he helped me here, too, in a sneaky way. He bred patience, thoughtfulness, and focus, all of which I need to communicate his own character. Further, to write well, it helps if you can bring integrity, courage, and kindness into your process. If this blog works at all, it is in large part because Gadget helped me internalize these traits.

Where does the puppy come in?

There’s no doubt that Gadget made me a much better dog trainer, as well as a more caring and empathetic canine caretaker and partner. I have a treasure trove of experience — what I did right and what I have vowed I will do differently next time — that will be invaluable when I raise the new puppy.

Gadget jumping over a pole across two kitchen chairs

I invented makeshift indoor agility for cold, snowy days.

When the puppies were born, the timer on “next time” began ticking, closing in on “now.” Gadget imparted a mountain of practical knowledge, of techniques, “how-to”s, and tricks.

But he also taught me in less quantifiable ways, because he tested me. Gadget was not an easy young rescue. He required patience, creativity, ingenuity, patience, intelligence, patience, courage, gentleness, patience, forgiveness, and love. I know for sure I will need to call on every ounce of this learning — especially that hard-won patience! — to raise a puppy into a service dog while I am severely ill.

Birth, Death, and Dreams

Some believe that all the characters in a dream represent a part of the dreamer. That would mean that not only am I the person struggling to make this blog work  — this enterprise built on what was lost. I’m also the one who desperately needs my help, and the one who is gone forever.

The Sharon partnered with Gadget is gone forever. A piece of me died when my partner breathed his last. Indeed, Gadget’s absence sometimes feels so painful, I can barely catch my breath. I’ve learned how literally accurate the term “heartache” is. It’s not a metaphor at all.

As to the others in the dreams? The one who needs me and the one embarking on the daunting new venture? The puppy, of course, is the first, and I am the latter in relation to the puppy.

Babies are ultimately needy. I will have to help the pup with its every need in the first few months, and, to a lesser extent, for the rest of its life.

There’s also no denying this puppy is already saving me, has been saving me since before Gadget died, when I knew a puppy would arrive this winter, regardless. That knowledge gave me something to look toward when all felt lost. The puppy is my hope for joy and laughter, a sense of purpose, and my eventual re-emergence into greater independence and freedom.

In other words, the puppy is the blog. This entirely new, separate creature who will not be Gadget, but whose care, love, and training will be so heavily influenced by all Gadget taught me.

Much like with blogging, I’m following a unique path. I haven’t mastered the art of frequent, pithy, focused little posts that seems to be the quintessential blog. I’m still laboring. And as a first-time puppy raiser with so much riding on it, I’m going to efforts just to prepare for the pup’s first few days in my home that most people find unfathomable (and a little bonkers).

I’m OK with that. Some thought I was nuts to adopt Gadget. They thought him wild, uncontrollable, totally unsuited to being trained by a young disabled woman as her service dog. But I knew otherwise. I saw his potential and knew he was a dream.

He still is.

Peace,

Sharon and the Muse of Gadget

We welcome your comments.

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