Three Years Ago Today

Gadget died, November 19, 2009.

Gadget and me in November of 2009

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

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

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

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

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

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

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

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

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

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

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

Don’t Leave Me This Way

I’m not sure if it’s the time of year, or if it’s that I have more support now and am not in a horrible crisis every other day, or if it’s just taken this long for the reality to hit me, but the grief is hitting me. Now, after years. Coming up on the three-year-anniversary of my good friend Norm’s death and the two-year-anniversary of my service dog Gadget’s death, it doesn’t take anything for me to start crying.

The Disability Blog Carnival for October is on the theme of music. It seems as if the theme of music is a popular one for disability- and illness-related blogs. I’ve seen it crop up as a theme for contributions in previous editions of PFAM, ChronicBabe carnival, and disability blog carnival posts. I generally sigh and move on when I see a call for blogs pertaining to music, because — I usually feel like a freak admitting this publicly — I don’t listen to music.

Listening to music is taken as such a given, cutting across age, race, gender, ethnicity, disability or nondisability status. Everyone likes music, right? Wrong.

I used to like music. I used to go clubbing, even. I have my favorite songs, singers, bands, groups. But after I got CFIDS/ME, for the first two or three years, I couldn’t tolerate music at all. It took little to put me in sensory overload. Far and away, the worst sensory assaults I experienced were definitely olfactory, but coming in a distant second was repetitive sound. Then, slowly, I was able to tolerate and enjoy limited periods of certain types of music.

For the next ten years or so, on rare occasions, if I was having a “good energy day,” and everything was just right in my physical, cognitive, emotional, and sensory world, I could put a tape in the boom box (yeah, I was behind the curve), and enjoy some Abba, Madonna, Tori Amos, Sarah McLaughlin, India Arie. . . .

Then, Lyme disease and other tick-borne disease struck in 2007. For years, I could tolerate almost no sensory stimuli — sound, light, touch, even the movement of the air around me was palpably, nauseatingly painful. I couldn’t even imagine wanting to listen to music. Slowly, due to aggressive antibiotic and antiparasitic therapy, I have been improving. I don’t have to wear sunglasses around the clock anymore. People can usually sit on my bed or touch me without me screaming in pain. I still don’t really gravitate toward music. There’s something about it that feels too chaotic. It doesn’t impart information or take me on a carefully constructed journey, like a book on tape does.

But music has an intrinsic emotional sense memory. Hearing a song that was popular when I was in junior high, high school, or college always transports me back to those moments. The emotion of those moments. Because of my neurological damage from CFIDS/ME and tick-borne infections, I have to carefully monitor and modulate my emotions. Sometimes, music jangles too much. On rare occasions, though, because of its direct connection to my emotional core, music is the only thing that “works.”

This was the case when I was grieving for Gadget. Gadget died on November 19 after a successful six-month battle with lymphoma and a ravaging two-month rampage by mast cell cancer. I was numb. I was in shock. I’d already lost most of my friends, and especially my best friends, to death or the complications of my crisis-ridden life, and now my partner, assistant, caretaker, student, teacher, child, companion, brother, and friend was gone from me, too. I was in despair. I had no way to let the feelings out. Everything was too painful.

For a while, the only solace I found, the only way to release just a little grief, to cry just a little bit, was to listen to The Commundard’s version of “Don’t Leave Me This Way.” I remembered it from my college years, from coming out. Even though the lyrics are mostly directed toward a lover, the sorrow, yearning, loneliness, and alienation that Jimmy Somerville conveys in his stellar falsetto, as well as some of the repeated lyrics, called directly to me, spoke my feelings to Gadget:

Don’t leave me this way. I can’t survive. I can’t stay alive. . . . No . . . don’t leave me this way. I can’t exist. . . . Don’t leave me this way.

All I wanted, all I could say, when I was grieving was, “I want him back.” I was abandoned, bereft. I cried to him to come back, “Don’t leave me this way.” I couldn’t believe he was gone. I wanted him back. Nothing else made sense.

I plugged my headphones into my computer, found the music video of the song on Youtube, and played it again and again, at the highest volume.

Here’s the music video, if you’d like to watch it. (Note: If you’re reading this post in an email, click here to watch the video.)

A captioned version of the music video is here at dotSub.

I still listen to it, sometimes. I still choke up and think of Gadget and marvel that I am still here, and he is not. I know he didn’t want to leave, but he couldn’t survive and stay alive. He needed me to let him go, to leave me this way.

– Sharon and my long, lost Gadget