Archive for the 'Canine Cancer' Category

When Your Service Dog Is Too “Smart”….

OK, so now you know I’m writing and blogging elsewhere, although I still plan to do my service dog blogging (and related stuff) here until I can get my own domain set up. Except for today’s post, because it turns out that won’t work. So I’m posting it on my writing blog, SharonWachsler.blogspot.com. I apologize for the inconvenience. Future Gadget- and Barnum-related posts will be back here at After Gadget!

You asked so many great questions about my experiences as a service dog (SD) partner and trainer that it is taking quite some time for me to write all my answers. I am also still finishing Barnum’s training. Until now I wanted to wait to train him to open the outside door to let himself out because I wanted to make sure he was really solid on having his door-opening behaviors under stimulus control. Which leads me to today’s topic.

Two of you asked about my funniest or most embarrassing experience as a SD handler, and that brought to mind this story which I’ve posted at SharonWachsler.blogspot.com.

– Sharon, the muse of Gadget, and Barnum, SD/SDiT (who will hopefully know better)

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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.

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

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

Carol, Lily, and ? . . .

Today’s post is not about me. I apologize for interrupting the discussion of what’s happening with Barnum, but this is important and time-sensitive. I will get back to Barnum and me shortly.

Today’s post is a conversation I had with Carol, whose service dog, Lily, a twelve-year-old American Pit Bull Terrier, died of lymphoma four months ago. This is not just the story of Carol and Lily, but of Carol’s resilience, and the lengths she has gone to to overcome Lily’s death and work toward regaining her sense of safety and independence.

Lily, a striking black-and-white pit bull, with a very shiny, glossy coat and a long, skinny tail, stands with her head turned, looking alert, on red steps outdoors, apparently on a red-painted wood porch.

Angel Lily

Carol and I found each other on the Lymphoma HeartDog Angels list, which is a listserv for people whose dogs were battling lymphoma and have since died. Carol and I are the only two that I know of whose heartdogs were also our service dogs (SDs). Carol’s disabilities are depression, post-traumatic stress disorder (PTSD), and agoraphobia.

To read today’s post, please visit my new blog, aftergadget.com. While that blog is not yet fully set up with all its features, it does have today’s post on it, with photos, captions, and Carol’s moving story.

We are having problems with our internet connection that often prevents me from getting to aftergadget.com, so if you post a comment, and it takes a while to show up, it’s likely because I haven’t been able to access the site to approve comments. Thank you!

– Sharon, the muse of Gadget, Barnum (SDiT?), Carol, and Angel Lily

How I Sleep (Or Don’t) – A List, Part 1

Recently I looked up the topic for the December edition of the Disability Blog Carnival and discovered that it related to sleep.

“Hm,” I thought. “Didn’t I write something about sleep at some point?”

I searched all my blog posts (published and draft form) using the keyword “sleep,” and discovered this blog — in draft (unpublished) form. I wrote it the second week of February 2010, three months after my service dog, Gadget, died, and two weeks before Barnum, my puppy, arrived. I don’t know why I didn’t post it then, because it was pretty much done.

Actually, I do have some idea, now. I recently read a list of signs and symptoms of grief, and a big one was inability to focus or to finish simple projects. That’s been happening to me for a year, and I’ve been feeling guilty about it, wondering what the  heck was wrong with me that I couldn’t function even though, physically, I’m overall doing better. Now I realize it was probably the grief and not necessarily under my control.

Now I’m having grief-induced inability to sleep because of the anniversary of Gadget’s death, and another recent loss unrelated to dogs, which I will post about . . . eventually.

Of course, my sleep changed drastically once a puppy arrived on the scene. There was the oh-so-fun sleep deprivation due to puppy care, which I don’t think I documented — possibly due to being too busy and sleep deprived.

Reading this post now feels so strange. There’s so much I’d forgotten, or maybe blocked out. Reading about it brings it all back so clearly and painfully, like the night Gadget vomited all over the house. I can smell it when I read it. This might seem like a strange thing to say, but I’m glad I wrote about it and saved it, because that was a critical turning point in Gadget’s life and death.

It’s important for me to remember what it was like then so I can better understand who I am now. Also, every piece of memory of Gadget’s life is precious to me, even the bad ones.

Of course, I’m compelled to write another post about how I’m sleeping these days, which I have started. . . But who knows when I’ll finish? Hopefully in time to submit it to the carnival. Meanwhile, here’s a chronology of how I slept — or didn’t — in the months, weeks and days before Gadget died, and then after.

February 13, 2010

Recently, Andrea Martin of It’s Time to Get Over How Fragile You Are told me that she often posts lists, because she likes to read lists, herself. I agree. Lists are soothing. They are a way to organize the world. I’d already started another post that was essentially a list, and now I feel I have permission to write more.

I’ve had insomnia since I got myalgic encephalomyelitis (ME)/chronic fatigue immune dysfunction syndrome (CFIDS) in 1995, and since then, there have been variations on that theme, such as an even more extreme sleep schedule caused by chronic Lyme disease, which led some friends and I to call ourselves “The Vampire Girls.” Yes, I’m a vampirette.

Gadget’s dying and death caused further sleep changes. Here they are.

Gadget Is Sick, but Not Dying

  • I go to sleep after massaging him, loving him up, pilling him.
  • I wake up to pee throughout the night and morning (because I go to sleep late and wake up late), and every time, I check on him, pat him, give him some supplements or medications.
  • If I can, I go back to sleep.
  • If I can’t, I rest, take supplements and medications, and try to get myself as functional as possible to be able to take him for a walk.
  • If it looks like it might rain, I try to get a weather forecast to take him for a walk before the rain, because powerchair electronics can get fried by rain, and Gadget doesn’t like thunder.
  • I get between five and seven hours of sleep. Since I need ten to function decently, I build up a sleep debt.

    Gadget lies on hardwood floor

    A cool spot on the floor.

Gadget Is Going Downhill

  • I give him pills on at one- or two-hour-interval schedule all day, every day.
  • I snuggle him, cry on him, rub his ears, tell him it will be okay, we will get through this.
  • Eventually, either he or I decides he should get off the bed. When he decides to get off, it’s because he feels hot all the time now, and he prefers to lie on the cool floor, by himself. I ask him to get off when I can’t stand the (physical) pain of him touching me or moving the bed anymore.
  • I stay up trying to eat or take meds or write my PCA to-do lists for the next day until I literally pass out — see below — because there is so much to do to take care of Gadget, I don’t get to the other stuff.
  • I can’t turn my mind off. But my body takes over, and I lose consciousness propped up, pen or water or medication or food in hand or on my lap, glasses on my nose.
  • When I wake up, I’m confused. Why am I sitting in a wet spot? What time is it? Why is there food on my legs?
  • Once the confusion passes and I realize I passed out from exhaustion again, spilling my water bottle, dinner, pills, etcetera. I clean myself up and check on Gadget. If it’s a good time, I give him a supplement or medication.
  • I put my hand on his heart to feel it beating and reassure myself.
  • I sleep less than six hours a night.
Gadget lies on the couch with his head on Sharon's knee

We're tired (but I try to hide it for the camera).

Gadget Is Definitely Dying

  • I do most of the above, except that everything gets harder as hospice progresses.
  • I give him pills on a one- or two-hour-interval schedule all day, every day.
  • I snuggle him, cry on him, rub his ears, tell him it will be okay and cry because I know it won’t be.
  • He gets off the bed before I want him to.
  • Sometimes I go to lie with him on the floor, but that interferes with the coolness he has sought of lying alone on the floor (no longer on one of his dog beds), so he gets up to move to a cooler spot.
  • If he wants something I’m eating before I go to sleep, I invite him on the bed and let him finish my plate. For once in my life, I don’t have much appetite anyway.
  • I still pass out trying to deal with the things I couldn’t get to because all my energy has gone to Gadget.
  • I wake up multiple times a night to check on him (and to pee, and to put away or clean up whatever has spilled or was perched on me when I lost consciousness).
  • Near the end, he sometimes vomits during the night. In the beginning, I leap out of bed at the first sound to move his or my bedding out of the way and to clean up.
  • Later, I am too sick. One night he vomits at least twice that I know of — it is the smell that wakes me — but I’m so exhausted, I literally can’t move to clean it up. I check that he’s okay and go back to sleep. My morning PCA tells me he has vomited all over the house. This is a few days before the end.
  • I add anti-nausea shots to his routine, and he feels better. He eats again. He doesn’t throw up.
  • I still check for vomit every morning.
  • I sleep two, three, five, eight hours. Sometimes, if Gadget’s most-loved PCA is here, I can nap an hour or two during her shift. Normally, I’m completely unable to nap.
  • At the end, the nights are bizarre. Two nights in a row, he wants to go out at 2:00 in the morning. I go out with him, and he wanders to the edge of the yard. I open the gate, and we go for a meandering walk. I’m wearing slippers and no coat.
  • The last night, it is well below freezing. Gadget is always hot now, and he wades into a pool by the side of the road, breaking through the layer of ice to get to the water. Then he can’t get out. I get in to help him, my leg going numb, and I am stuck, too. I have believed the stories about mothers lifting cars off their infants. I believe my body will do anything I require to save Gadget. Betsy comes looking for us and hauls us both out of the water. There is more to this story, but I will tell it another time.
Gadget in his reflective orange vest, in the water up to his armpits

At the end, even in frigid weather, he waded in up to his armpits.

After Gadget’s Death

  • The first two nights after Gadget dies, I fall asleep, and sleep deeply, for the first time in months.
  • Then, the death dreams start.
  • Eventually, those fade.
  • I awake looking for him every day.
  • Sometimes I wake up crying for him. Then that fades.
  • Eventually I only look for him sometimes. When he’s not there, I feel a weak blow of sadness, then I distract myself.
  • I stay up much too late, even though I don’t have a good excuse anymore.
  • I can’t bear to go to sleep, because the room is so alone and empty.
  • Not just the room: I am alone and empty. There should be a Gadget here, and there isn’t, and I keep putting off sleep because my day feels unfinished — there was no goodnight massage, no chat or murmurs, no hand on his moving chest.
  • The room is too quiet, all the time. There is no breathing or snoring or barking. There is no sound of the door handle turning at 10:00 AM when Gadget’s favorite PCA arrives. She just arrives, and I sleep through it, until she enters the room, and then because of the too-quietness, her tiniest noise wakes me.
  • I notice the empty, and it makes me fitful.
  • I start napping again. I get migraines, or I’m just exhausted, and I go to sleep for a couple of hours. I wake up at the time a reasonable person would go to sleep (11:00 PM, 1:00 AM, 2:00 AM) and then I’m awake till dawn.
  • Someone from the job I left because I was too sick and grief-stricken to function, harasses me by email and phone. I wish I had my protective, loud, lion-heart in our den.
Sharon asleep surrounded by water bottles, computer, etc.

I pass out with my stuff around/on/under me

When I Cry

  • Normally I don’t cry, but when I do, it’s at night, before sleep.
  • I like to be alone to cry.
  • I feel closer to Gadget when I’m alone, because I see him, and there is nobody who can get in the way of my vision of him.
  • Tonight, I fell asleep at 9:00 PM, which is about seven hours before I normally fall asleep. Lights on, stuff strewn across my bed, no dinner or night-time meds administered, I just pass out.
  • My PCA leaves without brushing my teeth, because sleep is so hard to come by, we don’t want to wake me up.
  • I woke up at 11:00 PM anyway.
  • I started thinking about this list I wanted to write, this blog, and of course now I cannot fall back asleep.
  • It’s 2:00 AM. It will likely be several hours before I fall back asleep.

The gist

  • I used to wake up to someone who was overjoyed that I was awake.
  • No matter what kind of mood I was in, how I felt, what the plans were for the day, my waking up was exciting. It was an event.
  • It’s difficult to fall asleep surrounded by absence. It’s beyond difficult to go to sleep knowing there is no one to wake up to.
Gadget, mouth open, looks like he is laughing

Gadget's smile.

* * * *

Back to December, 2010, almost a year later.

I know I’m behind on comments, but I really do love and appreciate them. I’ve just been bogged down in, well, grief. But I will respond!

-Sharon, the muse of Gadget, and Barnum (someone to wake up to)

Gluten-Free, Dairy-Free Black-Bottom (Custard) Pie

I know a recipe for pie doesn’t seem to have much to do with the usual themes of this blog, but I’m posting it anyway because (1) it’s an awesome recipe that I semi-created, and (2) it tangentially relates to my loss of Gadget (and Barnum manages to make a cameo in the pie pics), and (3) my life has been kind of rough lately, what with the downturn in my health and the anniversary of Gadget’s death, and other emotionally difficult stuff (that I discuss at the end), so sharing one of my favorite recipes is a nice distraction.

Warning: This is no recipe for wimps! You either need to have a good arm (your’s or someone else’s) or some cool, labor-saving kitchenware (like electric beaters), or both, to make this pie. It’s been a few years since I could make this pie on my own (and even then, it required “a good day”). Usually what I do is “oversee” the baking. This means I tell Betsy or a PCA what to do, and they do all the actual stirring and lifting and measuring (and especially whisking!), and I watch and direct.

I’m a control freak when it comes to baking, so I periodically stick my hand in and make sure it’s just how I like it. For example, I take charge of adding certain ingredients (especially light-weight ones). Ironically, my controllingness involves me tossing in a lot of the ingredients without measuring them, because I like to use more of some things (chocolate and vanilla, for example) than the recipe really calls for, and I don’t want to bother with measuring. I generally eyeball most ingredients, actually.

Black Bottom Pie and Me

Black-bottom pie is a fantastic pie, unlike any other, in that it is so much better than pie normally is. For one thing, it has chocolate in it. I see little reason to eat dessert if it doesn’t have chocolate in it. Sugar is just a vehicle for chocolate delivery, in my opinion.

Almost equally importantly, it doesn’t have a normal pie crust. Regular pie crust has neither chocolate nor sugar in it, so it is completely pointless. I am not typically a fan of pie. Can you tell?

I made my first black-bottom pie when I was twelve years old, using a recipe my mother found in that year’s Boston Globe. It was one of three “not-your-typical-Thanksgiving-pie” recipes. I never tried the other two because once I made this one, I knew I’d reached pie nirvana, and there was no point in seeking further. I have been baking black bottom pie for Thanksgiving every year since then. That’s a lot of pies! (I won’t say exactly how old I am, but the Globe recipe is from the early 1980s.) I still use the newspaper recipe, even though it’s become difficult to read because it’s completely fallen apart; it’s torn, folded, blurred, and faded, as well as smeared with egg and chocolate, etc. I piece a lot of it together from memory, which is another good reason to post the recipe here. It will be saved from obscurity and the ravages of my recipe drawer.

The G-F/Dairy-Free/Food-Allergy Aspects

The original recipe was not in any way hypoallergenic or gluten-free. I made the adjustments myself, over the years, as I became allergic to more and more foods. I also tweaked it to conform more to my particular tastes. As you will see, if you have food allergies, you can modify the recipe to avoid anything that might be problematic, except eggs or sugar.

The way I make it, every ingredient (except gelatin, because I’ve never found that in organic form — if you know of an organic brand of unflavored gelatin, please post in the comments!) is organic, except the eggs, which are free-range. Chemical food makes me really sick, so it’s not an option for me to eat non-organic. I haven’t written “organic” in front of every ingredient, but if you have the money and the access, do yourself and the planet a favor, and buy organic.

I’m very fortunate that I can currently eat eggs, as long as they come from truly free-range, nontoxic hens, because custard absolutely requires eggs. I can’t eat factory-farmed eggs, and I don’t even do well with organic eggs. (This site explains the difference between organic and truly free-range eggs. Note: The second part of the explanation is in an uncaptioned video.) I get my eggs from a local teenager who has truly free-range, nontoxic hens, and they are awesome.

The crust recipe below also has nuts in it, which are a very common allergen. I am allergic to all nuts to some degree, but some more than others. However, I can “get away with” certain nuts on occasion. If you are allergic to nuts and can’t risk it, just make a different kind of crust. The best kind is chocolate-cookie crumb crust or graham-cracker crust. In fact, those are the traditional black-bottom pie crusts. Or you can make a regular pastry pie crust, too. It’s very easy to make a fast, gluten-free traditional pie crust with just a mix of g-f flours, canola oil, water, and salt. I’ve done it many times, just by converting the 5-minute crust recipe in The Joy of Cooking by substituting “pastry flour” with equal parts rice, millet, and tapioca flour instead. I don’t even roll it out; I just mix it right in the pie plate and press it into shape with my fingers.

Crust

A true black-bottom pie crust is made from chocolate cookies. As the name suggests, this gives the pie a black bottom. I have yet to find a chocolate cookie I can tolerate that would work for pie crust, so I use a nut crust. The nut crust has two bonus features: (1) It’s easy. (2) It’s tasty and retains its crunchiness longer than regular crust. I originally got the recipe from my friend Emily, a nutritionist and allergy gourmet. Then I lost it, so now I kind of wing it. You have been warned.

Crust Ingredients:

  • Hazelnuts (because they are the most delicious nut on the planet, but you can use any nut you like)
  • Rice flour (because I tolerate it, but you can use another type of flour if you want)
  • Millet flour (ditto)
  • Oil (I use coconut oil, because it tastes awesome and has healthful properties which are maintained at high heat, but you can use canola or any other vegetable, nut, or fruit oil you tolerate)
  • Water
  • Salt
  • Vanilla extract (because everything’s better with vanilla) (optional)
  • Cinnamon (ditto) (optional)

Crust Assembly:

Preheat oven to 375 degrees.

Grind up nuts (in a food processor or blender) until they’re somewhere between the consistency of coffee grounds, sand, or a fine dust. It’s up to you how crunchy or floury you like it. I use enough nuts to end up with about 1/2 to 3/4 cup of “nut flour,” but I use an extra-big pie plate. If you have a smaller pie plate, make less.

Pour the nut flour into the empty pie dish. Add the other flour. I use about 1/8 to 1/4 cup of each, for a total of about 1/4 to 1/2 cups g-f flour. This depends, again, on the size of your pie plate and whether you want your crust really nutty crunchy (less flour, more nuts) or more like a standard pie crust (more flour, less nuts). (If you want to use a gluten-free flour mix or other types of flours, instead of the rice/millet combo, that’s fine, too.)

Add 2 to 3 tablespoons oil and a roughly equivalent amount of water and 1 teaspoon vanilla. You want just enough liquid to get all of the flour moist. Stir it around, and if you need more moisture, add a bit of oil and/or water. When it’s all moist, pat it against the bottom and sides of the pie plate until it’s relatively thin and even all the way around. Sprinkle a little bit of cinnamon on it.

Put crust in the oven for 10-20 minutes. I usually check it at 10 minutes, then watch it and check it every few minutes after that. Generally, it’s done at around 15 minutes, but if yours needs to stay in longer, don’t panic. It should get just slightly darker tan/brown than its original color. Basically, it should be dry and hard (but not like a rock). If it’s still moist or soft, it’s not done. If it’s brown or black, you burned it. Try not to do that.

Once it’s done, take it out and leave it somewhere to cool. Turn off the oven. You’re done with the baking part. (That was the easy part.) Often I bake the crust one day and do the filling the next, to spread out the work.

Black bottom pie side view

The finished pie. Note the deep dish crust!

Incredibly Awesome Filling (Layers of Chocolate and Vanilla Custard)

Filling Ingredients:

  • 2 ounces dark chocolate
  • 1/2 packet (1/2 tablespoon) plain gelatin (The only brand I know is Knox, but do tell if you know of another!)
  • 1-2 tablespoons water
  • 5 eggs
  • 2 tablespoons rice flour (or whatever flour you tolerate)
  • 2 tablespoons millet flour (ditto)
  • 3/4 cup sugar
  • 2 cups milk substitute (see directions for your options)
  • 2 teaspoons vanilla (optional)
  • 1/4 teaspoon salt

Filling Instructions:

Break up your chocolate. I like Green & Black’s 70% dark. If you like intensely dark chocolate flavor, use more than 2 ounces. If you’re more of a “milk chocolate” flavor person, definitely use less (1.5 ounces or so). I often end up using close to 3 ounces, because I’m a chocaholic.

Put the chocolate on a plate, and put the plate over a pot of gently simmering water. Not a pot with boiling water, just gently warm the chocolate so it melts. If you have a double boiler, I suppose you could use that, but I’ve never used one, so I can’t give you tips. You can also just microwave the chocolate, only be careful that it melts evenly and you don’t scorch it. Set chocolate aside.

Put the water in a teacup or somesuch and pour the gelatin on it. Set it aside.

Separate out the first 3 eggs. I suggest cracking them one at a time into a bowl that you use only for separating your eggs, so if you get some yolk in your whites, or if one of the eggs is bad, you haven’t ruined all the others. You want to end up with five yolks in a large mixing bowl and three whites (without any yolk “contamination”) in a smaller mixing bowl. I usually use the remaining egg whites to make meringues with, or I did when I was less disabled. Now I usually just fry them and eat them with breakfast or give them to the dog. Both Gadget and Barnum love(d) raw eggs. When Gadget had cancer, I fried the white and gave him the shell and yolk raw. Barnum gets it all raw. (Warning: Raw egg causes horrific dog farts!)

Speaking of dogs, Barnum apparently felt I couldn’t let another post go by without him. When I put the pie on the floor to take a picture of it for this post, he came over to investigate (of course — Barnum is Mr. Curiosity). So, we played “pie zen.” Barnum approached the pie, I said, “Leave it,” and he laid down next to the pie, with his head on his paw, looking away, clearly realizing there would be no chocolate custard deliciousness for him. It was so cute, I had to take a picture.

Barnum and pie

Barnum practices pie zen.

Whisk the egg yolks with 1/2 cup of sugar. (Don’t use the rest of the sugar yet.) Add the flour. If you can tolerate regular (wheat flour), just use 3 tablespoons of that (and count your blessings, dammit). If you are gluten-free, and you have a g-f flour mix that you normally use for baking, use 4 tablespoons of that (and consider yourself relatively lucky). If you’re like me and you can’t tolerate most forms of starch/flour, just use whatever combination you like of those that adds up to 3 or 4 tablespoons. A mixture is usually better for baking g-f, which is why I use both millet and brown rice flour, but if you can only tolerate one form of flour, that is fine, too.

Add enough of the milk substitute — I usually add about 3/4 cup or more — to make “a thin mixture.” (Again, if you’re not allergic to dairy, you can use actual cow’s milk — and consider yourself really lucky.) (Dammit!) If you can tolerate soy, I recommend soymilk, as it’s the closest thing to milk in taste and ratios of fat and sugars and such. Other options are almond milk, rice milk, hemp milk, or water. I can’t tolerate milk substitutes other than rice or hemp (or water). I use hemp milk because, even though it gives the vanilla custard an ever-so-slightly hempy taste, it’s thicker and more milk-like in its ratios of fat, protein, sugar, etc., than rice milk, which is pretty much just water and sugar made from rice. Plus, once you have all the various flavors melding together in the pie, you really cannot taste the hemp. (This is not just my opinion, but that of everyone who has tasted my pie.) (And no, hemp milk does not contain THC, so you cannot get high on it!) But, you can make this with rice milk or water. I’ve done it, it just takes longer during the whisking stage to thicken because there’s less fat, and therefore it’s also a little less rich and luxurious (but still good!).

Scald the remaining milk-substitute in a pot on the stove. “Scald” just means heat it on medium-high until right before it boils. You don’t want to burn it; that would be “scorching” it. I used to get those two terms mixed up. Then take it off the heat.

Pour the milk-substitute very slowly over the yolk mixture, mixing constantly. The best way to do this is to have one person pour the hot liquid while the other one stirs, but if it’s just you, you can just pour a little on, stir stir stir, pour a little on, stir stir stir. The reason you want to mix them very slowly is that if you just dump a lot of hot liquid onto the yolks, they will cook, and you’ll get scrambled eggs. If this happens, you might still choose to eat it (as I once did), but it’s very disappointing — trust me.

Now, take the yolk/liquid mixture and pour it back into your saucepan. This is where the work comes in! Whisk it constantly over medium heat until it comes to a boil and thickens suddenly.

Some important notes:

(1) Why must you whisk constantly? Because if you don’t, it will either burn, which will ruin it completely, or it will (again), turn into scrambled eggs, which will also pretty much ruin it, though it’s still edible if your standards are low, like mine. This is also why you should have your rubber spatula in hand to periodically scrape the sides and bottom, otherwise those parts will cook or burn in a way we don’t want.

(2) How will you know when it comes to a boil and thickens suddenly? It will boil (bubbles will form, pop, pop, pop), and then it will really, truly thicken, and become like custard/pudding. It’s exciting when this happens! How long it takes depends on your ingredients, your stove, and I don’t know what else. Sometimes for me, it’s just a few minutes, and sometimes it seems like it takes forever. (It takes longer if you, a chronically ill, fatigued person, do it, than if a healthy, energetic person does it. That’s been scientifically proven.)

When the above magic occurs, reduce the heat to low and continue whisking constantly for two minutes. By that time, it should be really thick and custardy. If you’re not sure, keep whisking it on low for another minute or two.

Remove the pan from the burner and add your vanilla. Pour half of the custard back into your mixing bowl from whence it came. If you’re like me, you’ll actually pour a bit more than half into the mixing bowl, because this will become the chocolate custard part, which is my favorite part. Also, we’re going to do something that will increase the volume on the vanilla custard part, so using more for the chocolate part makes it more even.

Anyhoo, divvy it up however you want and then add your melted chocolate to the part that’s in the bowl. Once it’s all smoothly mixed in, pour it onto your baked, cooled pie crust. Smooth it over, set it aside.

Add the gelatin (which will have hardened into a little gelatenous glob) to the still-warm custard in the pot. Stir it until all the gelatin has melted. Set it aside.

Add the pinch of salt to the egg whites and beat them on the highest setting on your mixer, until they form soft peaks. Use a clean rubber spatula around the sides to make sure all the egg whites get beaten. Turn off the mixer and add the leftover sugar. (Remember that 1/4 cup of sugar you didn’t put in the egg yolks? Now its time has come.) Turn the mixer to max again and beat the whites till they are glossy and stiff.

Use the biggest rubber spatula you have (it’s okay if it’s the same one you used on the egg whites) to gently fold in a big spoonful of the custard into the egg whites. Then, take the egg whites and gently fold them all into the vanilla custard. Do this until no more white patches show. Then pour this on top of the chocolate pie, which should be firm by now.

Final Touches

At this point, you can either pop it into the fridge, call it a day, and go rest, or you can try to make your pie even more impressive. The simplest way is to make swirls or waves in the vanilla custard and/or shave some chocolate over the top, or sprinkle it with the same type of nut you used in the crust, or something like that.

Black bottom pie

My only decoration this time was chocolate shavings on top. I didn't even bother making swirls in, or scalloping, the custard.

The original recipe I have calls for a third layer, which is whipped cream. If you’re going to go for a third layer, you should do this part right before you serve it. Either way, you can make the rest of the pie either the day before or the same day you intend to eat it. It just needs to chill in the refrigerator for at least a couple of hours for the vanilla custard to set.

If you can tolerate real whipped cream, I will refrain from saying how I really feel about that, except that you can find a recipe for making whipped cream pretty much anywhere (hint: heavy cream, sugar, vanilla, whip it).

When I used to tolerate soy but not dairy, I made tofu whipped cream, which is quite lovely on this pie, too. It ends up being more of a sauce than a “standing up on its own” whipped topping, so I recommend not pouring it on as a third layer, but having it on the side instead (When Harry Met Sally reference!) so that you or your guests can spoon it onto their own wedge. Again, I’m not going to provide the recipe for this, because it would require me to get up and find my tofu cookbook, and I can’t eat it anyway. Hint: You use the soft or “silken” type of tofu for this. I’m sure you can find the recipe elsewhere. Try a vegan dessert site. It’s really easy. It just requires tossing all ingredients into a blender or food processor or mixer and going “whirr.”

The  Gadget and “Other Things” Tangent

What does pie have to do with facing life after the loss of my service dog? This is sort of like the game, “Six Degrees of Separation.” The connection is that Thanksgiving used to be my second-favorite holiday (Passover was my first), which I celebrated, since 1993, with my two best friends, and all of our friends, roommates, and lovers of the time. They were very dear to me, and I have many happy memories of Thanksgivings with a rotating procession of our lovers, roommates, and friends — and my rotating food allergies, and my various cats and dogs that came and went — but these two people were constant. And we called ourselves our “family of choice,” and they meant the world to me.

My life stabilized, as did theirs, with the same partners attending each year. I settled firmly into the service dog way-of-life, and Gadget was a central part of holidays for me. This was especially true after I became much more functionally disabled, due to Lyme disease and coinfections (other tick-borne disease), contracted in the summer of 2007. I relied on Gadget a great deal for my day-to-day functioning, and for a holiday, which required extra functioning, that was even more true. At some point, I began a tradition of feeding Gadget a bit of the Thanksgiving meal, especially turkey. I know this is a serious no-no for a service dog, but when you’ve been partnered for many years, you learn what you can let slide without dire consequences. I enjoyed being able to indulge him on a festive occasion.

Then my life started falling apart, in November 2007, right around Thanksgiving, due to Lyme. I lost a lot of function, I was in excruciating pain and other forms of bodily discomfort all the time, and I developed a lot of psych symptoms (that I was not aware at the time were psych symptoms). That made Thanksgiving a hard time of year for me.

Then, people started dropping out of my life. Some died, some had difficulty with the physical aspects of my illness — including my speech disability — but most were alienated by my altered personality, or a combination of the physical and psychological effects the new illnesses had on my life.

One of the people who dropped out was one of my two best friends. I am still in contact with the other, but only just barely, by email. We are hanging on by our fingernails, trying to see if we can rebuild what was lost.

So, last year, as Gadget was dying of cancer, Thanksgiving was looming. I felt very bleak about this upcoming “holiday” that felt like a gaping wound of all I’d lost — except Gadget. Gadget was still with us, and even though I knew he was dying, I desperately hoped he had another couple of weeks left.

It felt like the most ill-named holiday ever. Except that I was terribly thankful for the few people in my “inner circle” (Betsy, my parents, a long-distance friend I talk to on the phone, and another whom I email) who had not abandoned me, and I was grateful for Gadget. I was grateful that we had had some special months when he was in remission.

Betsy’s and my parents were scheduled to come for Thanksgiving, which was the first time that had ever happened, and I was grateful for them coming to try to cheer and support Betsy and me during a hard time. Most of all, as T-day loomed, I fervently hoped that Gadget would be alive, so that I could be thankful that we still had each other. I wanted so much to feed him some turkey and stuffing and squash, to drop my hand down to pet his head between rounds of gluttony. I felt that being able to say I was thankful for Gadget’s presence would help diminish the feelings of loss that otherwise overwhelmed me.

Gadget did not make it to Thanksgiving. He died on Thursday, November 19, and Thanksgiving was exactly a week later, Thursday, November 26.

I was desolate. I tried to be cheery for my family’s sake. I don’t know how well I succeeded. I’m not sure, but I think I made a black-bottom pie, despite it all.

Before we ate, I set up a little plate for Gadget of turkey (without bones) and stuffing and gravy and veggies, and I put it on the floor near where I was eating. Sort of like putting out a cup for Elijah on Passover. I felt embarrassed about it. The only person I’d told what I was doing was Betsy. She kept trying to get me to put less on the plate, I guess because of the waste. I don’t know what our parents thought of me putting a plate of perfectly good food down on the floor for no one. Later, when I had to throw it out, I really didn’t want to. It was an effort, like the rest of the day — a series of forcing myself from one task to the next.

This year, I’m not celebrating Thanksgiving. Betsy’s driving down to spend the holiday with her mom and her cat. I’m going to spend it with Barnum, trying to ignore that the holiday exists. I’ll probably try to get a lot of training in — or a good, long walk, if my chair and I are up to it.

However, my parents wanted to do some sort of Thanksgiving-esque thing with me, so this past weekend, they came out with turkey, cranberry sauce, and stuffing (all made without stuff I’m allergic to), and I made black-bottom pie, just like old times. I only cried once, the food was good, the people were kind, and I just tried to get through it and not think too much about Gadget and all the others gone from my life.

One good distraction was Barnum. He has to learn table manners, because normally I eat in bed, so he didn’t know he shouldn’t come circling around the delicious-smelling table. Betsy helped out a lot by finding ways to distract him that didn’t involve food when I was eating. Barnum’s very entertaining when he’s playing.

The best part of the meal was the black-bottom pie. After all, it has chocolate in it.

That’s what it all comes down to. Despite all this turmoil and loss, two things haven’t changed: Black-bottom pie is awesomeness in a glass dish, and the person I usually find the easiest to deal with in a social situation is the dog.

I would close by saying “Happy Thanksgiving,” except that that would feel dishonest, because I don’t feel happy about it. I think I have come to a place of moderate acceptance, and that’s pretty damn good, considering.

Instead, I say, “Happy Black-Bottom Pie.”

May your dogs not attempt to steal turkey bones. May those you love show up in body and spirit. May your custard thicken suddenly and spectacularly.

-Sharon, the must of Gadget, and Barnum (Pie Zen Master)


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