Posts Tagged 'ophthalmologist'

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 in profile

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

Close-up of Gadget's head, looking tired, on couch

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 folded inside a futon with just her head peeking over the top

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.

Gadget with his head on Sharon's thigh in the van

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

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