When Your Service Dog Is Too “Smart”….

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

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

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

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

May 12: Ugh

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

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

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

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

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

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

I had to make her anonymous for this public blog.

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

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

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

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

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

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

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

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

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

I miss him so goddamn much.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Back Back Back: A Year Ago Today

Back, back, back
In the back of your mind …

When you sit right down in the middle of yourself
You’re gonna wanna have a comfortable chair

-Ani DiFranco

Backdrop

I’ve been feeling depressed lately. I thought it was mostly health stuff. Ten days ago, my doctor told me that my complete blood counts (CBCs) were showing abnormalities, and that I had to stop all treatment for Lyme disease and coinfections — eight medications in all, including intravenous and intramuscular antibiotics — because medication toxicity was the likely culprit. If my blood work was normal for a month, we could discuss how and which treatments to resume. If it didn’t, I’d need to see a hematologist. She added that if my medications were not the problem, the cause might relate to “bone marrow,” such as “leukemia.” Terrific.

I had the leukemia flag waved at me a few years ago by a doctor trying to convince me to go to the ER, which I’d been refusing to do. His scare tactic worked. I went, and it turned out to be a lab error, as I’d expected. In this case, we have several weeks of abnormal tests to prove it’s not lab error, and I really like my current doctor, but I think casual cancer references should be illegal.

Background

A few days ago I received copies of the blood work my doctor’s concerned about. Some of the things that were wrong, such as abnormal lymphocyte counts, reminded me of reading Gadget’s CBCs. In fact, the reason I can decipher a CBC is that after Gadget started chemo, I studied his every week. I researched what each abbreviation stood for and what it could mean for his health. I bought veterinary manuals. I learned all I could about canine lymphoma and its treatments. He ate a homemade cancer diet and received Western and Chinese herbs, supplements, acupuncture, and chiropractic. The average life expectancy of a dog on Gadget’s chemotherapy protocol (Madison Wisconsin or CHOPP) is a little over a year. Gadget lived half that.

When Gadget was diagnosed, I also had a feeling of foreboding — about myself. Even as I was sure I could beat the odds for him, I had a bad feeling about what it would mean one day for me. Gadget and I were as close as I thought it was possible to be (until we got even closer, during the months he was sick), and we shared many of the same health problems: food sensitivities, bad reactions to drugs and chemicals, neurological issues, thyroid problems. I had raised him as healthfully as I thought possible. Like me, he was exposed to no pesticides, no cleaning chemicals, no preservatives or additives in his food. We lived in the country, and he drank clean water and breathed clean air. With his lifelong health problems, I’d always known that the longevity deck was stacked against him, due either to genetics or his early life. I suspect he came from a puppy mill. Still, I had never thought it would be cancer that would take him from me. My friends and family were similarly shocked: “Cancer? No, it can’t be cancer. Not Gadget. Not with the way you care for him….”

When I accepted that it was cancer, I thought, “I’m next.” A lot of people with MCS get cancer. I don’t know how often it’s directly related. In some cases, it’s clear that the chemical injury that caused the MCS also led to cancer. In others, it isn’t. Cancer is so common in the general population, it might just be coincidence for most. Regardless, with all my own illnesses and my history of chemical injury, and the fact that I got sicker instead of better despite all my efforts, when Gadget’s diagnosis was confirmed, it was hard for me to shake the feeling that it meant something for my health too. After all, we were two parts of the same body/soul, with so many of the same obstacles thrown in our paths. Some part of me settled into a silent conviction that it was my job to care for him until it happened to me, too.

Then, all the work of battling cancer distracted me from myself. Focusing all my energy on Gadget’s physical health and his happiness kept me too busy for the next six months to allow those thoughts again. When he died, they resurfaced, but I pushed them away. Until now.

Backslide

As I wait out this month for my test results, my symptoms charging back as treatment is withheld, I’ve become depressed. At first, I wasn’t sure why. There are a lot of potential reasons: Feeling sick feels bad, in itself. Not knowing why I’m doing worse — is it the tick-borne diseases letting loose, or is it something else? — is scary. If it is Lyme & co., will I be able to return to treatment, or will I spiral back down to where I was two years ago, back to a life of severe loss of function and intractable pain that felt marginally bearable largely because of Gadget? Could it be that mood/behavior changes, which can include feelings of hopelessness, had returned along with my other neurological symptoms? In this case, how could I know which of my feelings were “real” and which were the bugs eating my brain?

Backtalk

You might think that Barnum would cheer me up, but I’ve actually found raising him in the shadow of my grief to be confusing. Sometimes, I feel joyful, triumphant, and proud that despite my inexperience with puppies, his challenging mixture of personality traits (to be enumerated in future posts), and my significant — and currently, extraordinarily unpredictable — limitations, we are managing to make a go of it. Other times, I am so angry with myself and wracked with guilt by mistakes I’ve made or frustrated by his puppyhood — the concepts he doesn’t understand, the final steps of housebreaking, the exuberance that just isn’t fun when it involves bodily harm or the barking zoomies at 3:00 A.M. — that I question whether getting a puppy was the right decision. I argue with myself:

Me 1: “Gadget wasn’t like this.”

Me 2: “But Gadget wasn’t a puppy when you got him.”

Me 1: “But I never questioned that Gadget would be a great service dog. We struggled with a lot of things, but I had total faith that we’d be a team.”

Me 2: “But that was partly ignorance! You didn’t know all the things that could go wrong. Now you know so much more about the many reasons a dog can wash out, and how a dog has to want to work. Back then, you just took for granted that a dog that had more gusto than Jersey would love to work. Plus, you have more disabilities now, which makes it harder to raise and train Barnum and ups the ante of the number of tasks you’ll want him to learn.”

Me 1: “Ugh.”

Backcountry

I’ve just finished listening to a book called Merle’s Door: Lessons from a Freethinking Dog, which is a deeply moving book about an intensely close relationship between a rescued stray and the author, Ted Kerasote. Although Merle was not an assistance dog, he and Kerasote had a working partnership, as well as a deep and intimate love. Kerasote is a subsistence hunter in rural Wyoming, and Merle helped him locate elk and other game. All of Kerasote’s meat was what he procured from the wild, so they weren’t just sharing a game; they lived off this teamwork. The subject matter, alone, was bound to make me continuously reflect on my relationship with my dogs, especially Barnum and Gadget. Kerasote — who gave Merle freedoms impossible for most dog owners — challenges a lot of traditional, as well as current, thinking on dog care and training. Combined with my struggles and deep feelings of inadequacy as a puppy raiser, this focus kept me comparing myself and my canine relationships with that of Merle’s idyllic life with Kerasote.

Finally, of course, any book about the life of a dog must end with the death of that dog. Merle died of cancer, and the journey of illness and death that Kerasote traveled with Merle was very similar to what Gadget and I experienced. I finished the book yesterday. For the past two days, leading up to Merle’s death, I cried over and over. When I otherwise had no energy to move, I’d lay still except for the sobs jerking my body. I frequently envied Kerasote’s abilities and resources, physical and social, to care for Merle and provide a death and funeral for him that I was not able to provide for Gadget.

Backtrack

I thought these were all the reasons I’ve been thinking about Gadget more than usual while simultaneously feeling his presence in my memory murky and hard to grasp — as if Barnum and Merle somehow were obscuring who Gadget really was, what our relationship was, why I felt this pain under my breastbone that I could not name. Until today, I hadn’t known what to do with it but obsess darkly, eat chocolate, and cry.

Then, Carol, my PCA said, “Today is May 8, isn’t it?”

I rarely know the date; even the month can be a stretch. I checked my calendar and nodded, yes, the eighth.

Carol said, “It was exactly a year ago that I took Gadget to the hospital, wasn’t it? May eighth? ”

That stopped my heart. It was.

Back, Back, Back

I was very sick that day, like today, like yesterday. I couldn’t speak or get out of bed, and I was in a lot of pain. Gadget’s eye had looked pink the night before, and I had flip-flopped over monitoring it at home, taking him to the ER, or taking him to a regular vet. On the morning of Friday, May 8, 2009, I sent Gadget to VESH (Veterinary Emergency and Specialty Hospital) with Carol. Part of what decided me was that VESH had an ophthalmologist on staff. Even though she was not scheduled that day, I was assured she could be consulted if necessary. I had a history with SD eye crises: Jersey had glaucoma, a common problem among Bouviers, and even though I had taken her to several vets from the time I adopted her (long before it was an emergency), it had been misdiagnosed repeatedly. By the time it was diagnosed, the affected eye was permanently blind and terribly painful and had to be removed.

Jersey's blind side -- the missing eye hid by her fall (bangs)

Afraid Gadget might relive this trauma, and frustrated by my helplessness at not being able to accompany him, I spoke at length to the receptionist at VESH via HCO relay, stressing the importance of getting Gadget’s intraocular pressure checked on both eyes and compared to each other. I told her that glaucoma was a breed problem in Bouviers, that a reading within the “normal” range should be suspect if it is still much higher than the other eye, and I asked the examining vet to call me by relay during or immediately after the exam. She assured me that they were very familiar with assessing and diagnosing glaucoma. This eased my mind slightly.

If only it had been glaucoma.

Backhand

I waited. It felt like forever until the phone rang. It was Dr. C. She was the doctor who had treated Jersey when she was dying of multiple-organ failure from unknown causes in 2006. Jersey was thirteen then, retired, and whatever killed her, either an extremely fast-moving infection or cancer, at least she’d lived a long life and didn’t suffer a protracted illness. Nonetheless, I hated hearing Dr. C’s voice. I hated her, irrationally because I associated her with Jersey’s death.

Within a few minutes, I despised her.

“Sharon, it’s good you brought Gadget in,” she said. She sounded cheery, and I thought her next words would be, “It is glaucoma, but we caught it in time.” Or that it was another eye problem that could be treated since we’d moved fast.

Instead, she followed up with, “Gadget has lymphoma.”

I was shocked. I couldn’t believe it. There must be a mistake.

I started crying, but she couldn’t hear me because we were on relay. Dozens of questions leapt to mind, but I couldn’t interrupt her, because we were on relay.

She continued, “If your dog has to have cancer, lymphoma is the best cancer to have.” She explained that, depending on treatment, he could have another two to thirteen months to live.

This was the “good” news? He had the “best” cancer? I wanted to reach through the phone and hit her.

Backtrack

Over time, however, I learned the truth of what she said. Most canine cancers strike quickly and leave no options for treatment or cure. Lymphoma is one of few that usually responds well to chemotherapy. Gadget had five good months on chemotherapy. We reveled in swims and hikes at the pond, romps with other dogs, walks down new paths, even some new skills — just to add interest and a sense of accomplishment to his life.

Clear skies, clear water, Gadget returns to me.

When another cancer struck — mast cell tumors — Gadget’s decline was swift and heartbreaking. He died November 19, 2009.

I feel robbed; a year ago, I expected to have Gadget here with me today. If Gadget had represented the mean, one year post-diagnosis we’d have one more month with him in remission. That was the average for the MW protocol at VESH: thirteen months. But, for there to be an average, half the dogs must live longer, and half the dogs must live shorter. Of course, Gadget could not sit in the middle of the bell curve, because Gadget was never average.

My sweet boy, I miss you. I want you back.

As always, we welcome your comments.

-Sharon and the muse of Gadget (with Barnum, puppy-in-training)

P.S. Right before I was about to publish this post I got a note from Rochelle Lesser of The Land of PureGold Foundation . This is a wonderful organization. They educate about so many crucial issues — working dogs, humane training, canine cancer, nontoxic pet care, and more. They also gave Gadget a grant to cover some of his cancer treatment, for which I was very grateful.

Currently, they are running a contest to raise awareness about the importance of nontoxic, real food for dogs in preventing cancer and other health problems, and I was astonished to learn that so few have entered! I am only one of two so far! Rochelle even did a touching quickpress about Gadget and the last birthday cake I made for him.

The first ten people who enter the Bone Appetit Recipe Contest receive a bag of free, nutritious dog treats! (And the grand prize is phenomenal.) They gave me strength in championing Gadget’s fight to survive. Please lend your support to this very important (and fun!) contest.

Eyeteeth

Eye – tooth

1. Dentistry: A canine tooth of the upper jaw

Idioms: 2. a. cut one’s eyeteeth, to gain experience; become worldly-wise.
b. cut one’s eyeteeth on, to be initiated or gain one’s first experience in.

3. give one’s eyeteeth, to give up something one considers very precious

Gadget tired, but precious, near the end

Leaving the Den

I have an eye doctor appointment tomorrow, and I don’t know how I will get through it. I guess if you cry at the ophthalmologist’s, you can blame it on the eye drops, right?

This will be my first time going anywhere since Gadget’s death.

Dental Crowns and Dental Clowns

The last time I went more than a few feet from my home was two months ago — for a dental cleaning. It felt really weird going anywhere without Gadget, and especially that dentist’s office because it was the dog-friendliest place I ever went.

Actually, that’s an understatement. The office staff had perfect assistance-dog etiquette. They admired Gadget and talked to me about him, but never petted him or talked to him. They had a Yorkie who was usually in the waiting room, but when they saw me enter with a service dog, they would whisk away their fiercely yapping guardian so that she would not interfere with my dog’s concentration.

They helped me train two service dogs in how to behave in confined, medical situations. First was Jersey, who mastered the down-stay as only a true Bouvier “floor potato” could, and spoiled me for life in my expectations in that regard. She was the queen of the flawless down-stay (AKA “nap”).

Jersey could even nap inside a folded-up bed

Then came Gadget, who, our first couple visits, got up every five minutes to snuffle my hand or treat pouch, wander into the hallway, complain of boredom, walk to the other side of the chair (and get his leash tangled around the equipment), stare at me accusatorily for putting him through this idle purgatory, or just to lie down in a more comfortable spot, which was always either the hallway or where Beverly, the dental hygienist, needed to stand to clean my teeth.

Beverly loved my dogs. Even when Gadget was popping up every few minutes to interrupt her job, Beverly would smile, laugh, say how cute he was. I would get him back in position, tell him to stay, wait a nanosecond, toss him a treat, wait thirty seconds, toss him another treat, wait a minute, two minutes, five minutes, treat, treat, treat. Lather, rinse, repeat.

At the end of every appointment, Beverly would say — whether it was perfect Jersey or antsy Gadget — “She/he was so good.”

And I’d roll my eyes and thank her, thinking that considering that Gadget had turned a 20-minute teeth cleaning into a forty-five minute training session, “We have a very different idea of what ‘good’ is!”

Looking back, I wish I’d cut him as much slack as Beverly did.

Later, when Gadget was fully trained and exhibiting excellent decorum, Beverly would say how far we’d come, what a great job I did training him, what a smart, wonderful, cute service dog he was. Of course, I agreed!

It was such a gift to have a “real world” training ground where dogs who are still learning — in other words, real dogs — were welcome. It’s an hour-and-a-half drive each direction, and they don’t take my Medicare or Medicaid, but I’ll never go anywhere else.

Long in the Tooth

This last time at the dentist — two months ago — was a world away from cleanings with Beverely. For one, I didn’t see Beverly except to pass her in the hall and say hi.

When I’d called to make my appointment, I’d explained that, for three years, not only had I been too ill to come in, but I had also not had stellar oral hygiene at home. I wanted to prepare them for the full scenario, which was that most days, a PCA (personal care assistant) would brush my teeth once, but twice in a day was exceedingly rare, and sometimes I went days without getting my teeth brushed. I was certain (as was one of my PCAs, who kept pointing out “a dark area” on one of my teeth until I told her, nicely, to shut up about it), that I had at least one, or probably several, cavities. Further, my teeth were covered in dark yellow and brown stains from the antibiotics I was on. Lastly, I said I couldn’t enter the small hygienist cubicle because I was now a full-time powerchair user.

The receptionist said she’d make me an appointment with the dentist himself (in his spacious office), and if I had cavities, he would try to fill at least one that visit. During my lengthy explanation of my dental negligence, I slipped in that I’d also been too busy to come in for a cleaning because I’d been taking care of Gadget, who had terminal cancer.

Although I didn’t ask her to, I hoped the receptionist would pick up on this clue and spread the word, because, whether he was still alive or not by the date of my appointment, I knew he wouldn’t be coming with me. For the past decade, everyone who worked there was used to seeing me walk in with a big, bear-like dog carrying a colorful pack. Now, for the first time, I would be accompanied by my mother, not Gadget. I would wheel through that doorway, dogless.

When I arrived, I knew immediately that the receptionist had understood and passed on the information. Nobody asked where Gadget was or mentioned him at all. There was no Yorkie in sight, either. I was so grateful not to have to answer any questions.

I felt naked without Gadget, but I was too consumed with the struggles of the moment to dwell on it. I entered at 1:00, able to speak and to easily stand to transfer. By 1:15, the ordeal of getting x-rays had so exhausted me that I couldn’t speak a word and could scarcely move my hand to write on a notepad to communicate. Then there were several small chemical exposures that sent me into coughing and gagging fits, which exhausted me still further. I had to keep downing medication and supplements to keep from falling out of that chair.

One of the benefits of extreme pain or illness is when it’s bad enough, you don’t care about anything else. So, except for the occasional unthinking search for a fuzzy gray figure on the floor, I was too busy trying not to cry from pain and exhaustion to spare a thought for my beloved, dying dog, at home without me.

I also experienced an unanticipated sense of relief from being away for a few hours. I enjoyed a tiny timeout from Gadget’s illness. I knew Gadget was dying, but he was still feeling and acting pretty good, pretty normal. Nevertheless, I could see what was bearing down on us. The knowledge of this impending loss, too devastating to contemplate, hung over the house and all who entered it. I’d lived with that, to varying degrees, for six months. During Gadget’s last month, I made a frenzied, perpetual effort to keep him feeling as comfortable and happy as possible until his very last breath. My days and nights consisted of constant assessments, pillings, injections, gourmet feedings, special walks, and late-night calls to the vet. It was deeply meaningful and completely enervating.

It was a release to get away, for just a couple hours, from that marathon I knew would end in defeat. At the dentist, for the first time in six months, I only had to worry about and take care of myself.

Tooth and Nail

Unfortunately, it turned out that I should have worried about myself more, cared for myself at least as well as Gadget. I had worried about certain aspects of my health, but they turned out to be the wrong ones!

My fears had centered around a mouth full of cavities, brown teeth that could not be made white again, and gums that had gone to hell. However, my dentist discovered no cavities, and stains were vanquished with simple, old-fashioned scraping. Even my gums were fine. Not so the rest of me.

That day threw the rest of my body into severe relapse. Since then, I’ve barely been out of bed except for a daily trip to the bathroom and a weekly bath. My voice, which had been strong — here to stay, I thought — ran away and hid again. Pain and immobility pitched their tents in my muscles and bones.

It is only in the past week or so that I have started, haltingly, to recover. And now I have this damn eye doctor appointment.

In the Public Eye

The dentist’s office, at least, was moderately MCS-accessible, and the staff made every effort to get me in and out fast to reduce exposures and other wear-and-tear. There, I have a long-standing doctor-patient relationship. Even though, or perhaps, especially because, Gadget wasn’t with me, I felt everyone’s support and concern for him.

The ophthalmologist’s is a whole ‘nother bowl of kibble.

My first and only visit so far took place six months ago. Even though eye doctors’ offices are notoriously chemical- and fragrance-sodden, I couldn’t blow off this appointment. My Lyme disease specialist wanted me to start taking Plaquinil, an antiparasitic drug that is effective at fighting Lyme and one of my other coinfections. However, in rare cases, it causes blindness. The damage starts at the peripheries of sight and is irreversible. Before I started the medication, we needed to get a baseline reading of my field of vision, so that if changes occurred, they would be discovered, and I would stop the medication.

That trip to the eye doctor was the first time in two years that Gadget and I had been out in public, working together. I was nervous about how he would do, especially because I could barely voice, and what I could squeak out was muffled by my mask. Although Gadget was proficient with signed commands at home, we had hardly practiced them at all in public.

When I entered the building, I was hit with a suffocating wall of perfume. It was ghastly. The ophthalmologist’s office was worse. It was so bad that my PCA, who smokes, said the smell was making her sick. Nonetheless, I did my best to put up with it. Gadget and I went to the eyeglass counter so I could buy a pair of big, dark glasses that go over my regular glasses, because I have so much light sensitivity that, like Corey Hart, I wear my sunglasses at night. My friends say I look like the Unibomber when I wear them, but I love them. The optician beamed at Gadget the whole time.

Then we went back to the waiting room. Despite the fumes, my heart was soaring. Gadget was in remission from lymphoma. I was (I thought), finally recovering from the multiple tick-borne diseases that had first felled me in June 2007. I was so proud of Gadget and of myself for making it there, for looking so put together in public despite all my syndromes and infections and his cancer. We were in tune with each other, working together as a strong, beautiful team.

Red Eye

Then an older man sitting nearby started talking loudly about Gadget. “There’s a dog in here!” He pointed.

He stood up to come over and pet Gadget, but his wife pulled him back into his seat. Look, she said, didn’t he see? The badges said, “Please don’t pet me, I’m working.”

“What?” He boomed. “What? The poor dog’s not even allowed to be petted?”

I tried to tell him that Gadget got lots of affection at home, but between my speech problems and my mask, the man didn’t hear me. Or maybe he was ignoring me.

Regardless, he kept going about the poor dog: What kind of life is that? You don’t even pet your own dog? Etcetera.

“What a mean boss you are!” He finished.

I just sat there, in shock, thinking how everything I did, from sun up till sun down, was for Gadget: preparing home-cooked meals, providing him with a thoroughly researched pharmacopeia of supplements, taking him for chemo every week, getting him to the pond every day to run and swim, even when I had to max out my pain medication just to get out of bed.

“But,” I thought, “I can’t defend myself by telling him any of this. If he knew Gadget had cancer, he wouldn’t be impressed, he’d be even more appalled. He wouldn’t see how much Gadget was enjoying being out with me. He’d think, ‘This horrible crippled lady’s forcing her poor dog to work when he’s dying of cancer!'” None of which was true, especially the last part, because Gadget was in remission and very much living with cancer.

I felt too defeated to attempt another response, especially since a lump had formed in my throat as I tried not to start crying. Carol, my PCA, who loved Gadget like he was her own, intervened, even though she’s not a confrontational kind of person. I think she saw my eyes glistening.

“She takes excellent care of him,” she said firmly. “He gets a lot of love. He has a terrific life.”

In the silence, Carol put her hand on my arm. “I think he was trying to be funny,” she whispered in my ear.

Making Sheep’s Eyes

After the obnoxious guy left for his appointment, two youngish women who worked in the office stood across the room, admiring Gadget. They said how beautiful he was, and I nodded my agreement. They said how well he was behaving, and I smiled to myself.

The tension that “mean boss” man had created was dissipating.

Yes, the two women agreed to each other and the room at large, service dogs are amazing — it’s remarkable what they do, and they have the best temperaments. In fact, one said, she couldn’t let her dog go near any other dogs because he was dog-aggressive. The one exception was her neighbor’s service dog (“she has MS,” she whispered). Her dog was just so well-behaved that she didn’t react at all to what her dog did.

“They train them so well,” she bubbled. “They’re such a blessing.”

“Yes, it’s wonderful what they teach them to do,” the other agreed.

Then one finally addressed me directly. “How long have you had, uh, him? Her? Him?”

I nodded when they landed on the right pronoun and said, “Eight years,” which Carol interpreted for them.

Of course, they were impressed and enthusiastic. I think if I’d said one year or five years or five weeks, they’d have marveled at that, too.

Then they followed up with that tiresomely presumptuous question I’ve heard for a decade: “Where was he trained? Who gave him to you?”

I answered, and Carol repeated it for them: I’d trained him myself.

“Really? You trained him? All on your own? Well, that’s wonderful!”

“Isn’t that amazing?”

Etcetera.

Shut Eye

The actual doctor’s appointment was much less eventful than the waiting room had been. When I finally got seated at the “field of vision machine,” I settled Gadget underneath me. It turned out to be a sort of combination video-game/mantra machine. I was given a sort of button-on-a-joystick to hold, as if I were a contestant on Jeopardy! and pressed my face into the front of a big box, the field of vision machine. A mechanical contraption behind the screen at the back of the box, moved around, blinking different colored lights on different areas of the screen, playing irritating music that’s presumably soothing to people who don’t have sensory-overload issues. The object is to press the button every time you see a colored blip.

The whole time, a synthesized female voice repeated affirmations:

“You’re doing well.”

“You’re doing fine.”

“You’re almost through.”

“You’re doing well.”

“You’re doing fine. . . .”

More than testing my vision, the machine seemed to test my focus and reflexes when challenged by distracting and irritating stimuli. I did it three times: Once to get used to it, then once for each eye. It took 45 minutes, at least.

I was concerned, when we started, that after so long at home with me, Gadget would find all these strange sights, sounds, movements, and smells unnerving. How would he react to the music and beeping and stoned-but-encouraging woman emanating from the moving and blinking and plinking over his head? I shouldn’t have worried. He was mildly interested, then bored, then sleeping. Score! He had achieved a Jersey-like level of mellowness.

I was glad he was so relaxed, because the test stressed the heck out of me. My reflexes have never been good, and time and disability have not improved them. I gripped the button handle so hard that after each round, I had to wipe the sweat off of it and flex my sore fingers. Also, by halfway through the first “real” test, I’d started to figure out the light pattern the machine made. I started to anticipate where the light would be. Then I’d try to make sure I really saw it and was not just pressing the button because I knew where to look.

Finally, over two hours after my scheduled appointment time, I saw the doctor. He spent less than five minutes with me, and we were free to leave. All the way home I thought of snappy retorts for the guy who’d pushed me to the verge of tears. I knew it was foolish to dwell on it. He would never have understood my witty remarks anyway! I told myself to forget about it.

Here I am, six months later, remembering it in vivid detail and dreading going back there again, without Gadget. People say obnoxious things all the time that don’t get to me like this did. What got under my skin so bad was that everything I was doing in my life — all my time, money, energy, love, hope, fear, focus — every fiber, was trying to save Gadget, love him, help him, preserve him. There was nothing I wouldn’t have done for him, and some stranger was telling me I was mean to him.

Now Gadget is dead, and I think some totally nonsensical part of me feels like somehow that guy was right. Somehow, if I’d done something differently, I’d still have Gadget. That maybe I pushed us too much to fly too high — I was too proud of us for overcoming all that we overcame — so we had nowhere to go but plummeting to earth. I know know none of this is logical. But I know something in me believes it, because whenever my fingers tap out a sentence about that man in the waiting room, my chest and throat get tight, and I start to cry.

It’s T minus 12 hours, and I’ll be back there again, trying not to cry. Same powerchair, different PCA, no Gadget. However, I won’t sit in that stinky waiting area. I’m bringing a cell phone, so the receptionist can call me when it’s time for me to come in. It’s going to be cold in the van, but I’d rather be cold than sick. Even if it were 70 degrees outside instead of ten, my heart would feel cold in the van, without Gadget resting his chin on my thigh like he used to whenever we drove anywhere. The weight of his head was so warm and comforting, his wet beard staining every pair of pants that weren’t already stained.

I'll miss that warm, moist weight on my leg

It’s going to feel just as cold inside, too, without a warm, furry body curled around my feet while I press my face into the hard plastic machine and strain my eyes to see the blinking lights. The machine will reassure me, though: “You’re doing well. You’re doing fine. You’re almost through.”

I wish I could believe her.

-Sharon and the Muse of Gadget

As always, we welcome your comments (and read every one, and try to reply to many).