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

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.

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

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.
  

  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.

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.

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.

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'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.

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 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.

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)

Gadget’s Cancer Journey, in Words and Pictures

In May, 2009, my service dog, Gadget, was diagnosed with lymphoma. The next day, we started chemotherapy. We went to the vet every week for his treatments. He died six months and one week later, of mast cell cancer, on November 19, 2009.

Although I was totally wrapped up in his care, aware of the tiniest details that shifted from day to day. After he died, I was shocked by what I saw in some of the pictures in his last months. The photos so clearly recorded not just moments in our lives, but when Gadget shifted from living with cancer to dying of cancer, even though I wasn’t aware of the shift when it first occurred.

At the beginning of our cancer journey, changes in appearance were largely superficial. His left eye, whose abnormal appearance had brought us to the vet, never expecting the cause would be lymphoma, retained a subtle, but distinctive, ring around his cornea, even after it was otherwise asymptomatic. It didn’t affect his vision or cause him pain. It wasn’t something a stranger would notice, but I, who had looked into those eyes every day for eight years, always saw it.

Though I love this picture of him, I can't help but notice the ring at the edge of his iris, vestige of lymphoma.

His coat, which had been a wiry, gray/silver brindle, also changed. He lost his harsh outer coat and was left with just the soft undercoat, which became a uniform charcoal.

Gadget laughing at life, before cancer struck, his coat in its full Bouvier glory.

However, during the first few months of our battle with “the beast,” these outward changes remained meaningless to me. Gadget went into remission right away on the Madison-Wisconsin chemotherapy protocol, and he showed every sign of being happy, feeling great, and not being aware he was sick.

He loved his new homemade cancer diet of meat, eggs, and vegetables, all drenched in salmon oil. He didn’t even mind the gazillion supplements that were mixed into his food.

More importantly, he and I spent lots of time together, just enjoying life and letting him be a dog. We went to the pond, his favorite place, every day that I could get out of bed to take him. His favorite time to be there was Friday at four o’clock, when his doggy play group met.

Gadget and Tessa take a break from playing to cool off and have a drink.

Gadget, Cider, Tessa, and Shay (Tessa's person) head home after a good romp.

He even had his first (and last) birthday party, which he truly enjoyed. He was thrilled by the great food, the guests (canine and human), the games, and all the attention.

The birthday boy awaits his cake.

Bobbing for Biscuits (homemade liver cookies!) was just one of the joys of the day.

Then, in September, he developed a little bump on his neck, below his right ear. It grew so rapidly that I saw and felt it change on a daily basis. From my recent crash course on canine cancer, I knew this was a very bad sign and suspected a mast cell tumor (MCT). Indeed, that’s what the needle aspirate proved it to be. While battling (and winning against) lymphoma, Gadget had developed a second form of cancer. I was surprisingly unfazed when we received the news. I was ready for it and was simply impatient to get to treatment and cure, for MCTs, if caught early and excised completely, are usually considered cured. We scheduled him for surgery.

The aftermath of surgery was a nightmare, unlike anything I’d ever experienced with an animal that had gone under the knife (including when my previous service dog, Jersey, had lost an eye to glaucoma). Gadget had to spend the night at the hospital — the only time we were ever separated for a night. Betsy went to visit him and said he was crying the whole time. She spent hours trying to comfort him, even sleeping in her car in the parking lot when the staff asked her to leave for a while.

The next morning, I couldn’t get there fast enough to bring him home. I sat impatiently in my powerchair outside, waiting for him to be brought out. Carol, my PCA, reported that Gadget was still crying as they unhooked him from his tubes and bandaged him for discharge. We thought Gadget was in emotional distress, that he would perk up as soon as he saw me.

When he emerged, the side of his head and neck were shaved, with a huge incision that stretched from just below his right ear to the bottom of his neck, almost a foot long. I had been prepared for that and got over the shock quickly. Moreover, I was pleased with how neat the stitching was and how well the wound appeared to be healing. The skin was already fusing. What I was not prepared for was that Gadget was still moaning in pain, even when Carol brought him outside and he saw me.

Gadget wailed and groaned, unlike anything I’d ever heard. He only stopped when the van’s engine turned over, and we backed out of the parking lot. At that point, he sighed and rested his head in my lap — as he usually did on the way home from chemo. He knew we were reunited and going home, and that seemed to calm him. I thought we’d gotten over the worst.

He rode with his head on my lap, a comfort to us both.

Again, I was wrong. When we got to the road, he started moaning again and didn’t stop. He cried, continuously, throughout that day and night.

It was torturous. I barely slept. His cries grew louder and louder, until he was practically screaming.

I kept calling the hospital, pleading for help. They suggested increasing dosages of his antihistamines and pain medications, which made a minor difference for short periods. But he grew increasingly restless and agitated.

Finally, a vet tech heard him screaming in the background during a phone call.

“Is that him?” she asked, aghast.

“Yes!” I said, caught between relief that someone there finally “got it,” and frustration that it had taken so long for the staff to respond to my desperation. I had already called them, beside myself, described his wailing and pacing, several times. Had they thought I was exaggerating?

Having heard Gadget’s distress “in person,” the tech had a new sense of urgency in her voice as she put me on hold to consult with a doctor. She came back and said it was possibly the lidocaine patch he was wearing on his foot causing a bad reaction. She said that some animals didn’t tolerate the drug and became agitated and restless, in which case the wailing was not from pain, but from this bad reaction. We didn’t know if this was the culprit, but I was desperate enough to try, even if it would mean having to take him back to the hospital for intravenous pain medication instead. I cut the patch off his foot and tried to clean the area as best I could. I was in such a hurry to get the damn thing off that I had forgotten to put on gloves, which I’d been instructed was necessary to prevent me from getting dosed with the drug, myself. It was only when my fingers started tingling and I felt the beginnings of numbness and nausea that I remembered and quickly gloved up before continuing. The tech had told me it would take several hours for the drug to leave his system completely, so I might not notice a change in him for quite a while.

Within a couple of hours, Gadget was much calmer. I was limp with relief as his wails receded and he was finally able to rest. I gave him more of the other pain medications, and soon he was comfortable. He still had to wear the Elizabethan collar, but he was serene again. The results came back from the pathologist — the tumor was a grade two malignancy that had been removed with clean margins. The oncologist said we should consider him cured. At the time, hearing the word, “cure,” made it all seem worth it.

I don’t have any pictures of the little lump that required such a huge incision, of Gadget’s abject misery, of him bumping into doorways and furniture while wearing the E-collar. I was too busy taking care of him to think of documenting it. Besides, we tried to take pictures of happy times, the times we wanted to remember. The MCT was just a “bump” in the road, he was cured, and I didn’t look back.

Betsy began to take many more pictures in the couple of months that followed, pictures that reveal a Gadget who never returned completely to how he’d been before. New problems kept cropping up — all seemingly unrelated. A limp caused by arthritis in his toes. A very bad cough (which, again, his specialist did not take as seriously as I thought she should). And then, another bump. This one was on top of his head, next to his left ear.

Gadget still looks "normal" and engaged, sniffing Betsy's breath. However, he was starting to get a little "quieter" at this time, and only a few small patches of his coat shows its gray, wiry brindling; the rest is the soft, charcoal undercoat he was left with at the end.

I showed it to the vet at his next chemo appointment, and she said it was nothing to worry about, just a wart. However, the “wart” grew and changed very quickly. It became crusty, then opened and oozed. I knew — though I desperately hoped I was wrong — that it was another MCT. Sure enough, when the vet next saw it, she was not so blithe. She also was more attentive to my concerns about Gadget’s cough, which had become a severe hacking that kept us both awake the previous night.

Gadget’s doctor aspirated the lump and took chest x-rays. The x-rays showed a small something, which the oncologist had not expected, but she thought it was likely not serious. However, she was unsure, so to be on the safe side, she sent them to a radiologist for a second opinion.

When she called me with the results it was one blow after another: The lump was another MCT, and the chest x-rays showed an enlarged lymph node, and a small area of pneumonia and a consolidation in one lung.

That was the first time I broke down with the vet. Until then, I had tried to be organized, clinical, and in control. I took notes, I reported, I researched, I instituted protocols. However, when I found out about the new tumor and the abnormalities in Gadget’s lung, I couldn’t hold back the tears.

“Are we just rearranging deck chairs on the Titanic?” I sobbed. “Is there any point in continuing?”

The vet was extremely sympathetic. I could tell she felt terrible delivering so much bad news. She said she did think it was worth continuing to treat because overall Gadget still had a good quality of life. While it was possible that the lung abnormalities indicated a return of lymphoma or a spread of mast cell cancer, it was also possible that it was simple pneumonia and would respond to a strong antibiotic. It seemed worth it to try the antibiotic and see what happened.

The antibiotic did help — right away. The vet and I were overjoyed. Gadget’s cough went away, and for a few weeks, I thought we’d dodged a bullet. I knew he had another tumor growing on his head, but I was waiting to decide whether to put him through surgery again until his lungs were totally cleared up. I believed we were still in the fight.

At this point, I found out later, Betsy and my friends and family all realized that Gadget was dying. I didn’t. His appetite was good, he was eager for walks, he still wanted to work, he ran wild at the pond.

Yet, there was the occasional time his appetite wasn’t quite as robust as before, so I gave him his supplements in peanut butter, instead of mixing them into his food. And yes, there was the very slight limp that arose from too much running to be aware of. But he was still active, still wanted to work and play, still seemed happy. I was too deeply immersed to see the pattern. Or maybe I wasn’t ready. Probably both.

The pictures tell a different story. We have a lot of them from this period onward, taken by Betsy. She tells me I asked her to take more pictures of him. I don’t remember doing that. Subconsciously, I wanted to capture the time we had left, but I didn’t let myself think of that.

We're tired (but I try to hide it for the camera). Normally, Gadget would have been much more excited to be allowed on the (new) couch.

Then, at the end of October, Gadget’s cough came back, and suddenly we were finding little bumps all over him. They were tiny, and if we didn’t already knew what we knew, we probably wouldn’t have worried about them. But by now, the writing was on the wall. We mapped them to bring to his next appointment, and counted 17 in all.

The night before his appointment, he became somewhat lethargic, and his abdomen suddenly swelled. We took him to the vet the next morning, knowing something was terribly wrong. The vet took one look at him, and I could see defeat. She listed all her concerns. She wanted to do an ultrasound, and if there were internal abnormalities — if he had come out of remission — to take needle aspirates. It was not an invasive procedure — it was relatively quick and required no sedative or anesthesia. A needle aspirate was less painful than a blood draw. I readily agreed. We had been down this road at diagnosis.

The results were bad, but inconclusive. His internal organs were riddled with cancer — misshapen and discolored, with numerous tumors throughout his abdominal cavity. What we didn’t know was whether it was lymphoma or mast cell cancer. It was not a typical way for lymphoma to come back, but lymphoma could do almost anything. However, the vet said it was also not completely typical of MCT.

It made a difference to me to try to find out which cancer it was, because if this was a lymphoma relapse, we could try a chemotherapy rescue protocol. There was reason to hope he might respond well to that, as his lymphoma had responded so well to chemotherapy in the past. However, if it was MCT, there was very little to be done by this stage. The doctor sent the cells she’d aspirated to the pathologist to try to get a determination of what we were dealing with.

Again, the news was bad. The cells were large, round cells, highly dysplastic (abnormal due to advanced cancer). Because they were round cells — which both lymphoma and MCT have in common — and because they were so abnormal (without nuclei), the pathologist couldn’t be sure which cancer it was, but he was leaning toward MCT. I asked Gadget’s doctor what her opinion was, and she also said MCT, though she couldn’t be sure. I was devastated.

We decided on one last chemo attempt — a drug that could work for either MCT or lymphoma and was totally noninvasive because it was given orally, as capsules. By this time, I knew nothing would save him. I just hoped it might beat back the cancer enough to make him feel better. The vet even agreed to pill him outside in the parking lot, so he wouldn’t have to be separated from me (or me from him), and he wouldn’t get smelled up by the chemicals inside the hospital and need a bath when he got home. This was also his introduction to Pill Pockets, which he loved, and which I came to rely on for many pillings during the remainder of his life.

I switched to hospice mode — palliative care. My goal was to keep him comfortable and happy for as long as possible, at home. No more trips to the vet. He got to eat whatever he wanted. He didn’t have to take supplements or meds, unless they would make him feel better. On prednisone, the end-stage treatment for canine cancer, Gadget perked up, his appetite came roaring back, and I tried to do everything I could to bring him joy.

Since his favorite activity was going to the pond, especially to play with the other dogs, we set up a special play group for him. I thought it would probably be his last — his abdomen was grossly distended and he was wobbly and tired.When I met my friends and their dogs in the parking lot, we didn’t know what to expect, and I was teary and frightened, grateful for their love for Gadget and support of me.

Gadget surprised us. He had a terrific time. He had always had a rather obnoxious crush on a yellow Lab named Cider, which he expressed by trying to hump her. Sure enough, Gadget took off — a little slower than usual, but just as game — and mounted Cider, who easily wriggled out from under him. We all laughed. I quoted Monty Python in Gadget’s honor: “I’m not dead yet!”

Visible from this angle is Gadget's shaved, bloated abdomen, which did not keep him from playing, swimming, and trying to put the moves on his favorite blonde (on the right, waiting for her cookie).

As it turned out, Gadget enjoyed two more play groups before he died. He was slowing down, but he still liked eating and going for walks.

Gadget near the end, obviously tired.

Eventually, his only true passion and excitement was in going to the pond. When it became too far for him to walk there, Betsy or a PCA drove us. As soon as he jumped out of the van, he’d be off, sniffing and marking, then heading down to the water — no matter how cold it was — to wade in up to his armpits and drink and drink.

Even in his last days, Gadget races ahead of me at the pond.

So it was that his last great adventure, the night before he died, took place at the pond. A night that was both wild and serene, when the weight of decision was lifted, and we shared a truly special experience. But that’s a story for another post.

Looking at these photos of Gadget when his spark was beginning to fade is painful and confusing. Partly, I feel the simple and terrible sadness of seeing him when he was less than himself.

Partly, it’s the questions these pictures raise: Was I so focused on treatment and care that I lost sight of what he needed most? Was I still holding on for him near the end, or for myself? Was he happy those times he rallied and seemed to be enjoying himself, or was he just putting on a good show? It all comes down to the question, should I have released him sooner?

Yet, when I try to imagine doing any of it differently — the chemotherapy, the supplements, the alternative treatments, the weeks of hospice — I can’t see making other choices. I have absolutely no doubt that without the chemo, he’d have died within weeks of his lymphoma diagnosis, a couple of months at most. Chemo was good to him; he almost never had any nausea, lethargy, or other side effects. In fact, we often stopped at the pond on the way home after a treatment for a run and a dip. We had several months of our working partnership and loving companionship, thanks to chemo. I can’t fathom missing that whole, beautiful summer of soaking up every joyous, precious moment with him.

Obviously, if I’d known that the MCT on his neck was just a tiny manifestation of a many-headed hydra that was taking over internally, I wouldn’t have put him — or myself — through the hell of that surgery. But I couldn’t have known. And at the time, surgery seemed like such a quick, clean option — one with a much higher likelihood of success than the half-year of chemotherapy we were slogging through for an 80 percent chance for an additional six months of survival.

Even at the end, when I knew he was dying, how could I have robbed him of his play dates, of his cherished treats and meals, of his pride at opening the refrigerator or my bedroom door, of all the time he spent letting himself be loved? How could I have killed him before I absolutely knew it was his time?

I couldn’t have done it any other way.

The pictures tell a story, yes, but they do not tell the story. They can’t tell the whole story. And neither can I. Gadget was the only one who truly knew what he was experiencing, and I could only guess and interpret then, and I can only question and yearn and remember now.

I let go. I remember. I yearn.

I remember. I yearn. I let go.

I yearn. I let go. I remember, again.

I don’t regret any of my choices, but I yearn. I yearn. I yearn.

-Sharon

Please share your memories and mental snapshots of Gadget in the comments.

A Year Ago: Re-Post, in Memorium

Gadget died shortly after noon on November 19, 2009. I am working on a post about his last night, which was actually quite beautiful, strange, and special. It was sad, but not depressing. Aspects of it were actually joyous, funny, and a little bizarre! I hope to post it by the 18th.

Today’s post is a reprint of the first After Gadget post, because it captures so much of what I was going through when I was mourning him afresh.

On the anniversary of his death, Betsy and I will plant daffodils on Gadget’s grave. The bulbs were given to us by a neighbor as a bereavement gift last year.

We will also partake in other rituals, including reading the notes and cards we received last year.

To add to those words, I request that those who knew Gadget, or were touched by him in some way in his life, via internet or youtube or in real life, please post your thoughts and memories about him in the comments section here during the coming week. Or how any particular blog postings about Gadget have affected you.

This community means a lot to me. Your words would mean a lot on our day of remembrance.

Thank you so much.

Peace,

Sharon and the muse of Gadget

BEGINNING AFTER THE END

(First published December 26, 2009)

Here are some numbers:

On November 19, 2009, Gadget, my Bouvier des Flandres service dog, died of cancer. That was five weeks and three days ago. He was nine-and-a-half. We waged war against the cancer for six months. Depending on who you quote, from one-in-four to one-in-eight dogs in the US will die of cancer this year. So, we are in good (or rather, bad) company.

But this blog is not about numbers. It’s about surviving a devastating loss that most people are very sympathetic to, yet few really understand – the loss of a service dog.

It’s about a dog who liked to chase squirrels, slam doors, and let himself out when he wasn’t supposed to. He loved stinky things like cheese and liver — and long-dead carrion! — and me. We shared a fierce, deep, quiet love.

It’s about celebrating him, mourning him, finding ways to live without his love and without his practical assistance. It’s about the emotional and physical journey of grieving a star of a service dog while beginning the raising of a new pup. It’s a place for others who have, or will, experience a similar loss to find comfort and joy.

We fell asleep together.

Why start this blog now?

Why not the day after Gadget died? From a practical standpoint, that probably would have made more sense, but nothing about death is practical or neat. Until now, I’ve been too much in shock to do much of anything. I still am in shock most of the time. In fact, right now, writing this blog is the only thing that does make sense.

Why This Blog?

First of all, it’s a way for me to grieve and make sense of this loss. I’m a writer, and so far I haven’t found a way to “cope” that feels like it works. Writing about Gadget, sharing his life and story with the world, seems like the natural path. I’ll share my feelings and my memories of Gadget as a joyful, loving spirit; as a working partner; as a teammate in training and creative problem solving; as a playmate and clown; as my means of survival. In words, in photos, in video. Fortunately for you, he was beautiful.

Gadget last winter.

I also hope that for you, if you’ve gone through a similar loss, this will help you grieve, too. Grief in all its forms is welcome here: numbness, anger, denial, sadness, loss, relief, questioning, or whatever you feel.

There are very few resources that I’ve found for grieving the death of an assistance dog.

There are groups who understand the loss of a beloved pet dog. I belong to one such listserv, and it has been a lifeline. The people on it are loyal and open and funny and kind. I love them.

Still, some parts of my loss are unlike theirs. Tonight, for example, I had a lot of trouble getting out of my bedroom because I couldn’t open my door. And I couldn’t call for help because I’m often nonverbal. If Gadget was still alive, not only would he have opened the door, he would have been happy to open it. It would have been fun for him, a game. He would have wondered, “Will I get some liver for this?”

When people help me, even when they are doing it because they love me or they’re being paid to help me, or both, they are never thrilled to do it. Sometimes they are resentful, frustrated, irritated. Sometimes they’re not bothered at all, but I worry that they are, anyway.

When I cry over the loss of Gadget, it’s not just his soft fur, his wet nose, his deep brown eyes, his beating heart against mine, it’s also how much physically harder and more limited my life has become. How much more dependent and scary. His death has created so many layers of aloneness in my life. Some of these layers of aloneness are common for pet bereavement, but some are unique to assistance animal loss.

Sometimes it is even hard to get support from others who have lost service dogs. There are groups for assistance-dog partners who are grieving, but they may be small or inactive. My guess is that unless one is in the midst of grieving, it is too painful to be exposed to the topic. That emotional wound could reopen at any time, because — if we’re fortunate — we will outlive our assistance dogs, again and again. The choice to be a life-long service-dog partner is as Kafkaesque as it is fulfilling. Few who have escaped the black hole of that loss want to be reminded of staring into the abyss again.

This will be a refuge to cry, to remember, to distract yourself, to laugh, and to find little ways — or big ways — to move on. All forms of sincere emotion are welcome here. There is no wrong or right way to grieve. There is just emotion that moves through you, that rises and falls like waves, and the process of surviving loss.

The loss of an AD is not just that of the heart, but of love, companionship, independence, safety, and partnership.

The Coming Attraction

I will be getting a puppy in several weeks whom I will train to be my next service dog. The puppy is due to be born in a week, January 1, 2010.

Looking back necessitates looking forward, and vice-versa. Even as I mourn Gadget, I prepare for his successor. Training the new dog in a Gadgetless home will be part of my mourning process.

Here, you can join me on my journey as a severely and multiply disabled first-time puppy raiser!

It seems a ludicrous, risky undertaking. Even healthy people find puppies exhausting! Yet, I’d always planned for a puppy this time around, instead of adopting an adult or adolescent, as I’ve done in the past. I thought Gadget would be here to help train the pup, as his predecessor helped train him. Now it is just us humans to raise the pup, and me much more disabled than when I trained my previous SDs. Still, I am full of hope.

I am excited and nervous. I already anticipate the joy and frustration, the weariness and triumphs, and how it will take everything Gadget taught me to be very, very, very patient to get through two years of raising and training to get a working service dog again. A dog whom I am sure I will love and come to rely on, but who will never be Gadget.

There can only ever be one Gadget. He wasn’t my first service dog, but he was and for forever will be my best. (I think!)

I wish you’d gotten to know him as I did. But here at After Gadget, you will know him a little. Thank you for joining us in this journey.

Peace,

Sharon and the spirit of Gadget, forever my Muse

P.S. I welcome your thoughts and feelings on my journey or on your own journey — whether you are facing a current loss or have lived through it in the past. Leave comments below.

His last great adventure.

stuck day

today is a stuck day. i haven’t had one in a long time. i thought i was done with them. that’s lyme for you. once you think you’re doing better, it returns and kicks your ass.

you probably can’t tell today is different from my writing, except that i’m not using caps. if i tried to use caps, i wouldn’t be able to write/post. that’s because all i can move right now are my hands, my facial muscles, some minor head/neck movement like small nods, and the lower part of my right arm. with great exertion and pain, actually, i can move more of both arms, but that’s only for necessities, like signing, typing, positioning. i’ve also reread this later when i was more functional and corrected the huge number of phrases that made no sense.

here’s what a stuck day is like: i wake up and think, “oh, i have to pee.” i realize that i’m in a lot of pain and feel weak, and the idea fleetingly crosses my mind that i might need help to get out from under the covers. “nah,” i tell myself. “don’t be such a drama queen. once you get going you’ll be fine.”

So (oh look, i did a caps! the drugs are kicking in!), I roll onto my side, and i get stuck. i can’t get the blankets off me. i can’t even move my arms or my legs, i realize. i can’t talk. ohshitohshitohshit.

then, i have to find my call button. this is the doorbell i wrote about in a previous post. no, i’m sorry, i can’t put the link in right now. maybe later, when i can move. [note: i’m doing a bit better now, so i’ve put in said links.]

anyway, i need to hit the button which is now loose on top of my overbed table. with great effort i get my left hand up onto the table, and it crawls around like a crab, searching. i hit my “clik-r” clicker button, and i hear barnum pop up. sorry buddy. bad trainer. no cookie. eventually i find and press the doorbell button. thank god!

here’s the problem: i’m lying on my side with my back to the door. i can’t talk or really make any sound. i can’t move at all except my left hand. so when i hear carol, my pca, open my door, i know she is waiting for me to say something or indicate something. and i appear to be all snuggled up, asleep. i try to sort of flap my left hand, opening and closing it, hoping she can see it from where she’s standing, but apparently she can’t, because I hear the door shut. DAMMIT!

“well,” i think, “i’ll just have to ring again. eventually she’ll realize i wasn’t ringing by accident in my sleep.”

yeah, right. cuz i can’t find the fucking doorbell button this time. i press the clicker again another couple of times — barnum’s really curious as to what’s happening now — and i can’t find the button. through tremendous effort i pull myself up a few inches to better search the table and find the button. i grab it — not letting it go anymore today — and ring it repeatedly.

i try to roll onto my back so i can communicate better, but can’t. fortunately, betsy comes to the door. yay! I had assumed she was asleep. she asks if i rang. i sign “yes.”

she asks what’s going on. i sign, “stuck,” which is a v-hand shape, finger tips on either side of adams apple.

her sign is rusty. she can’t remember that word.

“is it your heart?” she asks.

I shake no, then fingerspell S-T-U….

“You’re stuck!” she announces.

Relief. Nod.

“Do you need to go to the bathroom?”

Affirmative.

Thank god, betsy knows the drill. carol does, too, but she has back issues and is getting over the flu, and betsy understands me when i’m nonverbal better than anyone else does. also she’s strong as a power-lifter. she pulls the heavy blankets off me. she pulls my legs toward the side of the bed. she moves my pchair into position. she grabs my hands and pulls me into a sitting/slumped position. I take a moment to rest, then she lifts me onto the chair. i’m no lightweight. i’m always surprised how strong she is.

barnum is overjoyed to see betsy — and me out of bed — and he throws himself between us, wriggling, wagging, kissing, pressing against us. he is soaking up betsy’s attention primarily, because she’s more capable of good butt-scratching than I am. i ask her to stop so i can give barnum some attention, have him just focus on me for a bit.

refreshed by puppy love, we get back to business. i take the call button with me to the bathroom. once there, betsy picks me up off the chair while i pull down my pants (fortunately the muscle lock has eased enough now that I can do this), and i pee . . . for a long time! (you know the scene in A League of Their Own when Tom Hanks pees endlessly and Mae/Madonna takes out a stopwatch to time it? it was like that, except i wasn’t all hungover and gross.) we chat a little, mostly consisting of me mouthing/signing, “this sucks. why is this happening?” and exchange more dog love. Betsy helps me back onto the chair and then settles me in bed (without the quilts, which are too heavy, and even when i’m doing better, could immobilize me just by their weight alone). i just keep my light organic cotton sheet and blanket.

then she leaves me to go do other things and carol steps back in. my first priority is getting pain and muscle relaxant meds in me, so I can function better. i do a lot of mouthing and miming to get across what i need. carol and i get my laptop computer open and readjust my position, overbed table, and screen so i can communicate with her by typing.

one of the worst parts about stuck days is when they are apparently caused for no reason. i have no idea why today i’m doing so much worse than yesterday. i don’t know if this is my fall crash, and now i will be wrecked for weeks or months to come, or if this is just a blip. i don’t know if this is a result of the new Lyme treatment drug i started Thursday. fortunately, i am too exhausted, painful, and crappy feeling to care much about what it all means. i’m just focused on getting through, minute by minute — or actually, task by task. i feel relief that i have carol and betsy here to help me. it feels so much better to have peed and have the right bolsters supporting me in bed. writing this blog gives me something to occupy my brain, other than worrying what the cause of Mystery Stuck Day is and whether it will stretch out into weeks or more from here.

(the meds are really kicking in now, which is good because i can move better and feel less crappy. but it’s bad because i took them on an empty stomach, so i’m getting sleepy and dopey, and i want to finish this blog before i go back to sleep.)

several times since waking up, i have missed Gadget so bad it was a physical ache. if i’d had the energy to spare, i would have cried. but that would have wrecked the small physical gains i’d made, and i don’t even think i have the lung capacity for deep breaths, so i just locked those feelings in. in my heart, i was crying. it’s 20 days till the anniversary of his death, and i feel so heavily the weight of his absence today. he could have helped me transfer — to and from the bed, chair, and toilet. he could have gone for carol or betsy so i wouldn’t have had the stress of not being able to indicate i needed their help. he could have carried messages to them telling them exactly WHAT i needed. he could have opened my door again and again so that i wouldn’t have had to endure what i did to find the call button the second time.

the only “help” barnum provided was licking my face a LOT. i certainly appreciated that, even more than usual, but a little emotional boost and distraction only gets you so far on a day like this.

there’s also the hindering Gadget would NOT have done. (For the record, Jersey wouldn’t have helped me much on a day like this, because she was trained and worked when I was much more functional, but she also would have been very easy — no demands.) gadget wouldn’t have jumped up with his forelegs landing on my legs after i was back in bed, causing severe pain. he could have let himself out to pee and then come straight back in. he wouldn’t have stepped on my burning feet when i was sitting on the toilet. and then. . . .

when carol left me after i was resettled and typing this post, barnum started The Barking. Lately, once a pca (especially carol, his favorite) leaves, he tries to demand their return. after all, i am Boring Lady, stuck in bed, not playing or giving love or attention, while he could be following carol around the kitchen, watching her prep my meals. hearing lovey-dovey talk. getting rubbed behind the ears. etcetera. so, the second they leave my bedroom, he sits at my door and barks.

which is why the pcas all have to ignore barnum until i get up for the day. but i am still dealing with the extinction barking while barnum tries his damnedest to change my tyrannical rule.

lately, i’ve been dealing with this by working on “bark” and “quiet” with him, but being nonverbal, i couldn’t say quiet. HOWEVER, having learned from the past, he knows 3 cues for quiet: ASL for quiet, the word “quiet,” and the sound, “shhhh.” I taught, “Shhh,” because it’s a sound i can make even when i can’t speak. the ASL for quiet requires lifting hands to mouth height, which I can’t do right now.

so, after he has started the very loud, very sharp barking, it occurs to me that i can actually do something about this. i try to call him over to put his front end on the bed near my upper body, but he really only knows all the many ways i have of telling him “off,” for all the times he tries to get on the bed, because normally he wants on and I want off. of course, today i am patting the bed and making kissy noises and he just stands there, waiting for me to make my meaning clear. I can’t communicate “up” nonverbally. something to remember for later: need to teach signed cue for “paws up!” but i have my clik-r, which, despite its other faults (not my preferred clicker), is good for a day like today for two reasons:

1. it takes very little pressure to depress the button, so even on a weak day, i can usually manage it
2. it’s very, very quiet. barnum has excellent hearing, so he can hear it even if i click during one of his ear-splitting barks.

fortunately, i always have treats close to hand, so i click and treat for a silent moment. then we start practicing “shhh,” which goes well. he’s bored, and now i’ve given him something to focus on. occasionally i throw in the cue for “bark,” just to keep things interesting.

i am having trouble pitching the treats onto the floor, so i hold my open hand, palm up, on the bed, a treat on it, and barnum takes it that way. much easier. also, interesting note: he was ignoring most of the treats i threw on the floor, because they weren’t “good enough.” But when i offered them in my palm, he took them. could it be the energy expended was not equivalent to the value of the treat if he had to chase it? Or that, love-bug that he is, the contact involved in taking from my open hand added value? or that he liked the chance to “eat off the bed” which he normally isn’t allowed? the novelty?

at any rate, this gave me an idea. i do want him to learn to have paws/front up on the bed when i need his help, when invited, but not to have any part of his body ON my legs or feet — or other body parts — as that’s too painful. so i moved my hands back, closer to my body, for treating, and he jumped up and settled his torso parallel with my legs. actually warmly just barely touching them. felt good, physically and emotionally. perfect.

then i c/t him for making eye contact, for being quiet and still, and started shaping him to rest his chin in my palm. i mostly used luring. usually i try to use targeting or shaping more than luring, but if there’s anything a stuck day teaches, it’s that you use what you can. when i offered the treat in my palm, i’d click when he put his chin in my palm to eat the treat. i did this many, many times. eventually, i pretended to put a treat in my palm, and when he went to get the nonexistent treat, i clicked for contact and treated in my palm. c/t for that, continued. sometimes actual treat in palm, sometimes luring with motion that suggested treat. after a while i shaped the beginnings of a chin target in palm.

as his eye contact got more frequent, i started introducing my hand signal for eye contact, which is ASL for “look into my eyes.”

it felt really good to be accomplishing something when i was able to do so little. i had gone to sleep with all sorts of schemes and plans to work on recall remediation, using the great outdoors and Premack principle stuff i’ve been learning on the training levels list, because barnum’s recall (meaning, coming when called) ranges from great to eh to abysmal/nonexistent. but today’s physical and communication issues put the kibosh on that.

sometimes, actually, it seems like the best training occurs without plans, without grand expectations, but just by using my instinct, my thumb on the raised clicker button, and whatever the dog’s willing to offer. life with disabling chronic illness is unpredictable, and as wheelie catholic put it in a blog recently, that’s the thing about access — it isn’t a problem until it is. much the same as with everything with a severely fluctuating disability — it isn’t an issue until it is.

suddenly, nothing could be taken for granted, and it forced me to get back to the fundamentals of clicker training: see what the dog is offering, and shape it using just a click and some food. no target sticks. no body movement. no voice. it granted me a great feeling of power and control, of communication and making things happen, on a day when i otherwise was pretty well powerless and struggled to make myself understood by the people around me.

i still missed gadget terribly, because we already had a working language, and because he could have actually helped instead of just offering a challenge to overcome. On the other hand, i did tell barnum’s breeder i like a challenge. be careful what you ask for.

Please comment, if you feel inclined.

-Sharon, Barnum, and the muse of Gadget (and Jersey)

Without Gadget, Who Am I? A SD-less Service Dog Partner’s Identity

Every month, there is a disability blog carnival. Every month I start a blog for it and don’t finish it by deadline. This month’s carnival topic, “Identity,” is particularly close to my heart, so I’m forcing myself to squeeze out this post on time.

My identity, for years, has been inextricably bound to being a service dog partner. In fact, my avatar is ServiceDogPartner for most sites that require them.

How does this identity play out in everyday life?

A telling, one-word answer is “We.” Any activity, especially if it involved leaving home, required, or was enriched by, the participation of my service dog; therefore, we were a we/us, not an I/me:

• “We’re going to the doctor tomorrow.”
• “We went for a walk.”
• “We picked apples in the back yard.”
• “The manager gave us a hard time about entering the shop.”

In fact, the first big “Aha moment” I had about what a difference a service dog could make in my life was when Jersey, my first SD, and I went to the grocery store without human help, for the first time in years.

Of course, I had trained Jersey, devoting all my energy to the endeavor for many months, in the hope that she would make me more independent, less restricted, but I don’t think I actually believed my own pep talks to myself until that day at the grocery store. What a revelation.

Jersey went everywhere with me. She reduced my isolation. She helped me participate in activities around my home that I otherwise couldn’t have done. For example, I was able to garden because she carted the tools and plants out to the yard and offered bracing and walking assistance when I became too exhausted. At the store, she carried my money, pills, water, and grocery list in her pack, as well as small groceries. When we got home from the store, she carried the bags from the van to the house, and from the door to the fridge. In little ways, every day, she helped me save energy that I could use on writing or talking to friends or just resting.

That was at a time when I was less disabled than I am now, and with a service dog who knew half the skills Gadget did. Jersey changed my life, but Gadget revolutionized it.

How can I even put into words what Gadget meant to me, how inextricably he was entwined in my life, how he was a part of my body, mind, and soul? It’s a struggle I have every day now, as the anniversary of his death descends on me, and my grief at his loss feels overwhelming. I grope for language that can convey who he was/we were. My unexpressed grief is like a magnet attracting hard, metallic shards of sorrow, anger, confusion, and fear; it grows larger and heavier, digging into my heart and weakening me.

Where do I begin?

This is the crux of the issue in so many ways: Where did I begin and Gadget leave off, or Gadget begin and I end? How do I continue without him, without this part of myself? Without him, who am I?

Maybe accepting my inadequacy to truly convey what Gadget was for me is the essential first step in beginning to define it, or at least hint at it:

• Gadget was always with me, even in my dreams. This was true with Jersey, too, after we’d become a working team. Just as, after I became disabled, in my dreams I also had MCS and CFIDS, there came a point where Jersey was by my side in my dreams. When Jersey retired and Gadget took over, he entered my dream world even more quickly than Jersey had. Even in my subconscious, he was an extension of me. As I’ve written in previous posts, after he died, he haunted my sleep.
• Gadget was my hands. He turned lights on and off. He opened and shut doors. He picked up things I dropped.

This video shows some of the skills above and below. Read the video transcript here.

• Gadget was my legs. He brought me water. He brought me the phone. He helped me transfer.
• Gadget was my voice. He carried messages to Betsy from me. He understood and followed signed requests. He let my PCAs know I was awake and needed their assistance.
• Gadget was my memory. He alerted me (sometimes woke me) if the oven timer was going off or if someone was at the door and I’d otherwise sleep through the appointment.
• Gadget was my safety. He knew how to run to my landlord’s house with a message if I was stranded. He helped keep me warm when I was without heat during the week-long ice storm power outage. He stood by me, barking and growling, if a strange person entered my home unannounced.
• Gadget was my strength. He helped me stand up and walk when I was too weak or dizzy. He helped pull my manual wheelchair if I couldn’t use my powerchair. He carried or carted things that were too heavy for me.

That tells you what he was to me, but not who he was.

• He reveled in his strength and speed. He liked to slam the doors shut. He loved to run, to wade in the water, to go on long walks off-leash, always checking in to make sure I was following, or doubling back to me before sprinting off again.
• He kept me company. He was warm and soft and loving. He would plant the top of his head against my chest so I could scratch behind his ears. He put his head on my leg in the car.
• He was calm, grounded, wise, and still. He let things roll off his back. He was patient and relaxed. Not much got to him. He was a dude.
• He loved to train and to learn. He loved an intellectual challenge. He liked to figure things out. He made mental leaps that left me breathless and my lesson plans obsolete in moments.
• He was trusting and knew how to relax. When invited onto the bed, he’d drape himself over me, or push me out of the way with extended legs. He let himself be poked, prodded, manipulated, squeezed by me, my PCAs, and countless veterinarians.

After our nightly tick-check, we were both so relaxed we fell asleep just like this.

• He was funny and sassy. He was his own dog. He wasn’t above sneaking around to get his way. He’d let himself outside when he wasn’t supposed to, or leave my room to visit with his favorite of my PCAs when he was supposed to be in my room with the door shut. This is what happens if you give a smart dog the tools to obtain his own freedom and independence.
• He was my best friend and my comfort. I loved the way he felt, the way he smelled. My hands knew every inch of him, every bump on his skin. My eyes knew every spot or stripe of his coat.
• He was my traveling companion. He was home.

I needed these parts of him just as much as the others, because his separateness, his unique personality and doghood, was part of our relationship and thus our partnership.

After Gadget died, I’d turn to look for him to help me in the ways I’d been accustomed — to open doors, to carry messages to Betsy, to bring me the phone. I felt as if a piece of my body had been severed, as if I was reaching out my hand to open the door and discovering I had no arm. I felt such deep pain, loss, and confusion when I realized again and again that he was not there that it felt like emotional phantom limb pain: the parts of my body and mind that lived in Gadget had died, and now I was no longer whole, but the pain of what had been there lived on.

Now, without a service dog — a non-partner — who am I? Where have those pieces of myself, and the pain of the shadow parts, gone?

In some ways, the pain has dulled. I don’t feel there has been much actual healing, more of a sense of physical and emotional numbness, the exposed nerves on ice. I have mostly adapted to not having the assistance I did before, mostly forgotten what it was like for life to be easier. I think this is a typical part of living with disability — we become habituated to our limitations and therefore don’t realize just how much pain, exhaustion, isolation, or limitation we are dealing with, until something (a medication, a piece of medical equipment, a personal assistant) eases the difficulty. Then we think, “My god, why didn’t I get this help years ago?”

Having Barnum in my life muddies the picture. He is my dog. He provides companionship. But he is not (yet?) a service dog.

He takes away energy, uses my strength, taxes my limbs. I am giving, giving, giving and getting nothing back, physically. Emotionally, it’s a cocktail: I am exhausted, frustrated, and mentally and emotionally overworked most of the time, yet he also makes me laugh, makes me feel loved, provides companionship, gives my life goals and direction.

Nonetheless, training a successor without a current SD in place keeps me in limbo. He is not yet a service dog. He cannot even be called a service-dog-in-training, because he does not yet have the obedience or public access skills or the beginnings of the service skills necessary to earn that title. Still, almost all my time and energy feed the hope and belief that some day he will be my service dog.

I hate existing in states of betweenness, living on hope or the promise of future gains. It was one of the promises I made to myself when I first became disabled by chronic illness: I would not devote my life to cure, not spend all my mental, physical, emotional, or financial resources on experimental treatments that might someday have the potential to reduce my illness somewhat — or not. I do get treatment. I do seek improved health and function. But, for fifteen years, I have refused to sacrifice my life now — which is real and true — for an ephemeral maybe of the future. I’ve seen too many people put their lives on hold until they get better, only to come to the crushing realization five, ten, fifteen years down the line that they are still sick or disabled, no better off for their grasping after a cure, just older, and without the skills or assistance they could have used their energy on to have a richer life with disability.

Yet, here I am, doing much the same. In my heart, I am and always will be a service dog partner. Even though I have no canine assistant now, my life revolves around cultivating one, even knowing that there is always the chance we might fail. Barnum could develop a physical injury or illness or a temperament issue, or suffer a training catastrophe, that would render him unfit to work as a service dog. We could become a great SD team and then have him get sick, traumatized, or die before his time. Even if he does turn into an excellent SD, living out a long, healthy, happy working life, the fact remains that I am sacrificing a great deal now, every day, for that future.

I have arrived at the answer to my question: Who am I without a service dog?

I am a person who is willing to lay almost everything on the line, including one of my fundamental beliefs about the best way for me to live with disability, in order to become an active service dog partner again.

When Life Gives You . . . Melon Heads?

I know I’m not supposed to think this, let alone write it on a public blog, but, as Michael Kors likes to say, “Let’s be honest.” Barnum is not as smart as Gadget.

(Don’t hang me out to dry! Read to the end, please!)

Maybe I’m wrong. Maybe when Barnum gets older, he’ll surprise me. Maybe it’s because of all the training mistakes I’ve made. Regardless, Gadget was 12 months’ old when I adopted him, and Barnum is now eight months, and the distinctions become more and more stark with each passing week. These two dogs really couldn’t be more different.

There are many kinds of intelligence, so I’ll get specific.  I’m talking about doggy “school smarts”: trying to figure out what the trainer/handler wants from you, having the confidence to try out behaviors (and make mistakes), a gusto for training (assisted by a gusto for food), and a general ability to problem solve in everyday life. In all but the first category, Gadget leaves Barnum in the dust. (Barnum, however, is so anxious to give me what I’m looking for in training situations that he actually can easily become anxious and frustrated; he wants desperately to succeed, and is vociferous if he feels confused. He also is incredibly sensitive to unintentional cues, which means he’s super tuned in to me and body language. This makes some aspects of training much easier, and a lot of it much harder. All of which is making me into a better trainer — goddamnit!)

Barnum doesn’t intuitively grasp how to do what I used to think were basic doggy skills — until my first Bouvier des Flandres, Jersey, showed an astonishing lack of them. I attributed that to her not having had a very enriching first half of her life, but now I wonder if it had more to do with nature than nurture. For example, I’ve had to teach Barnum how to nudge open a door with his nose if he wants to get to the other side and how to use his paws to get at a treat inside his crate or behind an easily movable object. He hasn’t yet figured out that just by his sheer mass, he can move the (very lightweight, and thanks to his frequent full-body blows, very flimsy) screen door as he brushes against it. Instead, he waits for me to hold it open for him. If it’s partially closed, or swinging shut, he’s afraid of it hitting him. On the other paw, now that he’s learned he can nudge open other doors that are partially closed, he tries to open totally shut, latched doors (by pawing at them). And he doesn’t give up when the door doesn’t budge. Let’s be honest: he hasn’t yet connected all the dots.

Contrast this with Gadget, who, on our “gotcha day” drive home, pulled my sleeping bag out of the cardboard box in the back of my van, pawed and nosed it into the perfect nest, then curled up in it for a nap. That one act (rather, that series of complex behaviors to reach a goal he’d conceptualized from the outset), convinced me that Gadget was gifted, a natural-born problem-solver. (It’s also another example discrediting the assertion that dogs don’t think abstractly.)

I expected Barnum to become that kind of thinker. I figured if I started off with a promising puppy and did lots of clicker training from the beginning, lots of mental enrichment, I’d have a prodigy — an even more inventive dog than Gadget. But, as so many other parents have learned, babies — regardless of species — come with their own personalities.

Gadget learned cues and behaviors four or five times faster than Barnum does. In one of our first training sessions, he learned how to shut a door — in three-minutes. I had to stop teaching Barnum to shut a door because the sound and movement of the door closing frightened him (even though in general he is actually much less fearful than Gadget was). I train from one to four hours per day with Barnum, in several sessions, with breaks. We probably average about two hours a day total. I’m putting in far more work and getting much slower results than I expected, and certainly less than I got with Gadget. On the other paw, I’m also trying to build a much stronger foundation and not cut corners, like I did too often with Gadget. I’m holding on to hope that all this training now will pay off in more solid, reliable, and eager work in the future. (Please, please, please, Training Levels, let me live up to my expectations!)

Maybe it’s not so much a matter of intelligence. Maybe it’s youth and other interests. Specifically, Barnum has the distraction threshold of a paper bag because everything (except me and food) is so unbelievably compelling. He is so distractible that I can’t get him to move out of my way on the ramp once he’s crossed the threshold of the door, because he is arrested by looking at the gravel — every single time. We go out the door multiple times a day, every day, but the gravel never loses its fascinating appeal.

Gadget had his passions, and beyond them, he didn’t bother himself. Gadget loved to run and run and run, to train and learn, to eat, to chase (squirrels, cats, big game like bears and deer, and at the end of his life, pick-up trucks), to play with other dogs (if it involved running and chasing) and that was mostly it. The fact that one of his biggest passions was training (in part because he was so food driven) tends to overshadow the others. He loved me and the few other people in his family pack, in that quiet, aloof, dignified way Bouviers have, and he was protective of our home. He had no use for other people, which is also very Bouvy. He didn’t have much interest in play. He’d retrieve a ball a few times to humor me, and in return, I’d dole out some treats. (Yes, I was bribing him to play with me. It was totally not clicker training. I had to show the treats before he’d go for the ball.) He made it clear that he’d much rather be problem-solving — how to open a different kind of door or retrieve a new object or sniff out a stuffed Kong I’d hidden in a diabolically difficult place. He loved shaping, the ultimate form of puzzle-solving for a dog communicating with their handler via clicker. He loved to think, and he loved to earn his food.

And now here’s Barnum: The only dog I’ve ever had who leaves food in his dish. He doesn’t like peanut butter. (What dog doesn’t like peanut butter??) He’s not so into Kongs unless they’re packed solid with raw meat or cottage cheese, and even then, he often leaves them after a few licks. His attitude toward food can be summed up in one word: “Meh.” Of course, a dog’s gotta eat, and yes, if he’s starving or there’s nothing to distract him (and I mean nothing — no sounds, movements, smells at all), then it’s worth working for food.

Nonetheless, thanks to the magic of clicker training, he is much more interested in treats than he used to be. The power of earning the food, of training me to feed him, lends a higher value to all earned food. But he still only works for good treats. He spits out kibble if he knows I have something better. He even lets his favorite food (cheese) fall out of his mouth if his focus is elsewhere. I could hold a steak in front of him, and he’d duck around it to continue stalking a grasshopper (which, if he caught it, he would eat). I’m absolutely not exaggerating. He really would ignore the steak. He also often prefers to eat sticks and rocks to meat or other delectables.

More differences: He’s the first dog I’ve had who is happy to entertain himself, who actually likes being in the yard finding his own amusements, and doesn’t need to follow me around wherever I go (though he does keep an eye on me). It goes without saying that he loves to dig, and to destroy plants and shrubs by digging them up. So now we have a massive, ugly fence around our garden. Digging is new to me, too.

We named Barnum after the circus because he early showed his acrobatic tendencies. (I still need to post the story of how he got his name. Sorry, readers!) But it’s become more apt due to his clownishness, as well. For instance, he is entranced by watching his reflection in the glass doors. He doesn’t just stand there looking. He jumps up and down on his hind legs, catching serious air, watching himself bounce. He barks at himself. He gets a ball and holds it in his mouth as he jumps up and down. He runs back and forth between the doors, watching himself speed by. Barnum knows he is looking at himself, not at another dog. For one thing, he often watches me or makes eye contact with me in the reflection, using it as a mirror.

“What’s up Mom? Watch me!” (Grabs ball, bounces up and down, drops ball, barks, grabs ball and runs, skids, returns to original glass door, bounces more — all the while making eye contact with me through the glass.)

Here’s a short video of Barnum jumping and barking in front of the doors. Please note that usually he does less barking and much more — and higher! — bouncing. But it was late, and he was tired. I’d also recently started teaching him to bark on cue, so he was feeling quite barky. (We hadn’t established the cue yet, just the behavior.) I didn’t caption the video, because there’s no talking. Read the text description here. Access note: I sometimes tilted the camera sideways, so part of the video’s sideways, which might be symptom-inducing for some. (This includes me. I’ll know not to do that in the future.)

In fact, the first time I put a pack on Barnum to get him used to gear, he showed a Tim Gunn-esque sensibility. Once he felt comfortable in the pack (mostly, he still hates gear), he trotted over to the glass and checked himself out! He actually turned his head this way and that to get more angles. “Oh yeah, I’m a dude.”

Unless it’s hot (another difference — Barnum detests the heat, loves the snow and cold), he wants to be playing all the time. His signature move is to roll onto his back, all feet in the air, and swing his head to look at the nearest person, practically shouting, “Rub my belly! Lavish me with affection!”

Barnum, at seven months, very much the playful puppy.

He even sleeps in “dead bug position” — a very relaxed, happy guy.

In fact, I think he’s actually a more well-rounded dog than Gadget was. He knows more different styles of play than Gadget did and plays better with a wider range of dogs. He has broader interests: he doesn’t limit himself to only squirrels or prey that’s turkey size or bigger, like Gadget did. Barnum will stalk and chase anything that moves, literally: bugs, song birds, laser dots, balls, toys, leaves blowing in the wind. (Oh, how he loves the wind.)

Jersey hated the van, and Gadget barely tolerated it. Barnum loves to go for rides, sniffing the air out the window and looking over the dashboard to take in the world going by. When we arrive anywhere, he is excited! Who knows what smells and sights and sounds await? Thrilling! Gadget and Jersey had to counterconditioned to numerous phobias. I’ve yet to expose Barnum to a strange noise he’s afraid of; chainsaws, airplanes, amplified live music are all just fine. The usual bugaboos for many dogs — skateboards, bicycles, grocery carts — don’t freak him out, either.

The biggest difference is that Gadget was cerebral, while Barnum is a love. A sweet, gooey, tender boy.

The telltale (pun!) sign is — no surprise — Barnum’s tail. Unless he’s concentrating hard on something (such as a moth), that tail can start wagging at any moment. I’ve never seen a Bouvier tail that wagged so much, even in videos of Bouvs excitedly working Schutzhund or herding. It wags fast. If I praise him, he curls his body with pleasure, dropping his ears and head, and wagging very fast. He will come over to me, and his little stubby tail is wagging so hard that his whole rear half is swaying to keep up. He’ll throw his head against me and press into me, and while I pet him, he wags ferociously. He shows such pure joy at receiving any kindness — praise, petting, chattering. Sometimes, he prefers praise to food, which is hard for training, but very endearing.

He is a believer in kisses. Lots and lots of kisses. On my lips, on my ears, on my nose. Anyone who gets on the floor in this house is in danger of getting French kissed or their ears cleaned or both.

He doesn’t reserve his love for family, either. It’s true that as he ages, he is getting more of the Bouvier aloofness with non-family, but he still rushes to greet anyone he sees (just lately, with a nose in their crotch) — whether they want to have anything to do with him or not. When big, strange men come into our house, he doesn’t even bark! He waggles over for some petting.

In other words, when he’s not aggravating the crap out of me by chewing everything he can find or staring at (seemingly) nothing when I want his attention, he’s enormous fun. In general what he lacks in focus, he makes up for in enthusiasm. However, when he’s playing, he is all focus and all enthusiasm. He thinks tug is the most marvelous game in the world, and fetch and balls and stuffed squeaky toys are great, too. Oh my goodness, yes — especially plush squeaky toys. He loves to tear them to pieces to extract and chew on the squeaker. While Jersey’s and Gadget’s toys lasted their whole lives, Barnum has already destroyed almost all of their toys as well as his own. I recently bought a bunch of stuffed animals at a garage sale for 25 cents each, just so I could let him dismember something for cheap.

Most of all, he’s a wonderful playmate, which I desperately need. I have few human friends these days. Indeed, because he requires a lot of heavy-duty play, Barnum is my best form of physical and occupational therapy: throwing and tugging, throwing and tugging, throwing and tugging. His favorite game is for me to hold up a toy and tell him “Get it!” so he can leap into the air and grab it, then we tussle over it. I ask him to release it, he does, I throw it, he brings it back, and we tug some more. It’s a serious workout. (Thank god for pain killers.) It’s also hilarious, joyful, and life-affirming. He makes me laugh more than any other dog I’ve ever had.

I don’t know if Barnum is the perfect service-dog candidate. Only time will tell. Lots and lots of time and effort; lots and lots of working and training. We are so far behind where I thought we’d be at this stage, I just try to focus on the little victories; otherwise despair can creep in. When I see the big picture of how far we still have to go, it’s a bit nauseating.

Yet, when Barnum wiggles up to me, cuddly and tail-wagging, a toy in his mouth he wants me to tug, and then just hearing my voice, he wags his tail faster, I rub his ears and my frustration disappears. He is clearly the perfect candidate for one job: mending a broken heart. Thank god he’s already on the job.

I miss you, Gadget.

Thank you, Barnum.

Love,

Sharon

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