Archive for the 'Ableism' Category



BADD 2011: Please Don’t Send Me This Video

[Note: I wanted to write this post for last year’s BADD, but I couldn’t finish it in time. (Instead, here is my 2010 BADD post.) What a painful irony that I should finally be tackling this topic, while I’m facing the question of whether I will have to wash out Barnum, my service-dog-in-training (SDiT).

The graphic for BADD. Along the top, in yellow letters on a dark green background, it says, "Blogging Against Disablism. Below that is a multicolored square comprised of twenty smaller squares with one stick figure in each, mostly standing, some wheelchair symbols or with canes.

BADD 2011!

Welcome to my International Blogging Against Disablism Day 2011 post! I love writing, and reading, the BADD posts, and I know you will, too!

Every year, on May 1, bloggers from around the world post about disablism, or as it’s usually called in the US, ableism. Dis/ableism is the oppression of people with disabilities (PWDs). Ableism is so omnipresent, omnippressive, vast, and insidious, it’s almost impossible to explain to people who don’t live it. So, please, read the other BADD posts and learn!

Now, on to my topic!

I wanted the full title to be: “Dear Well-Intentioned Person, Please Stop Sending Me This Video,” but that was too long.

I also noodled with a more sarcastic title — “Wipeout! The Inspirational Washout Video” — but given what I’m going through with Barnum, even I can’t find humor in this topic.

The Onslaught of Well-Wishers

It all started a year-and-a-half ago, shortly after Gadget died.  I told friends and acquaintances (on Facebook, on my brand-new blog, in my online chronic illness communities) that I planned to get a puppy to raise as my third service dog (SD).

Following that, for months, many many people sent me the link to a youtube video called “Inspirational Video: Turning Disappointment into Joy: SURFice Dog Ricochet.” Essentially, this video glorifies a program-trained SDiT washing out. There’s more to it, but that’s the main storyline.

Those who sent it to me clearly had no idea how problematic the video is, itself is — how ableist — and therefore offensive to me as a PWD. But even worse was how inappropriate it was to send this video about a SDiT washing out to me, a PWD about to embark on training a SDiT puppy.

The first time I watched it, I was crying by the end, and not in an “inspired” or “joyful” or “special” way, but in a wretched, hurt, sad, frightened, disbelieving way.

People kept sending it to me. I thought it would never end.

Who sent it to me? All sorts of people, with “dog people” being, by far, the most common. There with two notable exceptions; these people did not send it to me:

  1. Assistance dog partners. All of the dog people who sent it to me were companion dog (pet) people, not SD people.
  2. disability rights (DR) activists. While many of the people who sent it to me do have disabilities — in all cases, chronic illness — none of these folks identify, as far as I know, as members of the DR community.

The type of comment I got when someone sent me the video was, “I saw this, and I thought of you!” Or, “I know this will bring a smile to your face.” My jaw would drop, my stomach would turn over, and a lump would form in my throat. I didn’t reply, because if I did, it would have been the text equivalent of either sobbing or screaming obscenities.

I didn’t want to do that because I knew they meant well. I was too addled by grief to try to attempt any sort of educational effort as a response. So, I just stayed silent, and I felt very alone, with all these people trying to comfort me contributing to my sense of isolation. That was perhaps the worst part. I truly believe that everyone who posted this to me did so because they thought it would make me happy.

How can so many well-intentioned people be so painfully misguided?

Well, that’s one of the most common forms ableism takes, actually — causing harm to PWDs with the best of intentions, often “for our own good.” In the name of “our own good,” PWDs have been (and still are) forcibly sterilized or institutionalized, subjected to constant and oftentimes humiliating scrutiny to “prove” we are disabled and therefore worthy of services and equipment, denied access/accommodations and medical care and equipment, and on and on. Obviously, sending me an  upsetting link is not equivalent to putting a young disabled person in a nursing home instead of providing them the tools to live independently, but they both involve a lack of insight into what is most needed and wanted, a failure of imagination, at the least.

The portrayal of PWDs in all forms of media reflects these attitudes of paternalism, which is essentially nondisabled superiority with a soft-focus lens. Every day, you can find blogs, newspaper articles, TV shows, and movies making use of these most common ableist tropes:

  • PWD overcomes tremendous obstacles to do truly amazing thing (Inspiring! Courageous!), AKA the supercrip trope, e.g., person with severe physical disability scales humongous mountain, person with chronic illness hosts wildly popular TV show.
  • PWD is amazingly inspiring (and also pathetic) because s/he does mundane activities most people do every day, AKA the posterchild trope, e.g., man with intellectual disability works at his job! Blind woman rides a horse!
  • PWD as embodiment of a morality tale (“There but for the grace of God go I”) of either complete goodness and purity and innocence, AKA the Tiny Tim trope, or evil (“twisted” or “crippled” personality by their disability), AKA the Captain Ahab/Captain Hook trope.
  • Nondisabled person/charity/institution speaks about and “on behalf of” PWDs, e.g., the parents of a disabled person are interviewed, but not the PWD himself; the social worker, priest, charity, or other members of an organization “serving people with disabilities” are lauded for their “good works,” keeping PWDs in the role of client/charity case, and therefore disempowered — the passive recipient. This is where a lot of the damage is done “for our own good.”
  • The cure trope (often coupled with the trope above), where a charity is featured that “serves” PWDs, usually as a fundraising/publicity effort. Those who do most of the talking are the nondisabled staff, but often one PWD is used as an inspirational centerpiece. The needs and rights of people living with that disability now are ignored completely or relegated to a low priority. The pinnacle of success of the cure trope is usually a wheelchair user who stands up or walks.

In most of these representations, the main role of the PWD is to be viewed, gawked at, stared at, presented, examined. The PWD is presented for entertainment value (whether that be “inspiration” or pity or revulsion), not as an actor/doer, but as a subject.

These ideas don’t just stay in books or on the screen, of course; they live in people’s minds. They are evident by the way people stare at me or point at me or talk about me as if I’m not aware of their comments.

They come out of the mouths (or are typed by the fingers) of the many people who have told me I am “brave,” “courageous,” “inspiring,” and other disability-stereotype buzzwords, just for living my life, as well as all the people who have told me I should be trying harder to cure my disabilities, or that I am disabled because I’m on the wrong spiritual path, or applaud me for “Keeping your sense of humor” (because automatically my personality would change when I became disabled?) or ask me, tremulously, how I have managed to “go on.” (Because it’s the only option, other than suicide?)

While concepts of inspiration, courage, etc., may seem to be complimentary and beneficent, they are actually extremely damaging because they “otherize” PWDs. Tucked into that package of amazement and “admiration” is the message, “There must be something intrinsically different about you that caused you to become disabled/is the result of your disability, and therefore, since I am ordinary (not an inspiration for just existing), I am normal and will not become disabled. You are scary and different; I can distance myself from my fear of disability by perceiving you as sub/superhuman.”

Do I think everyone who says these things to me is consciously and intentionally trying to be oppressive? Absolutely not. I think most probably have internalized these fears and negative ideas about disability without awareness; nonetheless, even while they are saying what they believe to be complimentary (or at least, insightful or helpful), these beliefs and feelings are entwined in their message. Please keep these tropes in mind when you watch the video!

The people who say these things are, in other words, well-intentioned, just as — one assumes — the makers of this video are, and the hundreds of thousands of people who wrote gushing, soppy responses to it. I can’t help but think of one of my dad’s favorite expressions: “The road to hell is paved with good intentions.”

Since there is no dialogue, just a song with occasional titles/captions over the images, I’m not providing a captioned version.

Read the transcript/description of the video here (including lyrics to the song).

View the video below:

Things that Make You Go “Hmm…”

Having just watched the video over and over to transcribe the text, images, and song lyrics (which I hadn’t paid much attention to previously, as I’m really not a music-oriented person), was not only extremely unpleasant, but revealing. There is so much here to dismantle in this five-minute video, from a disability studies perspective (and also from an assistance-dog [AD] training perspective), that I could write a small book on it, but I don’t have the time, energy, or emotional stamina for that, and you have other blogs to read.

Therefore, I’ll just briefly raise some questions you might wish to consider. Several of these questions cannot be answered without knowing more details about the dog and trainer than you can learn from a five-minute fundraising video, but they are interesting to ponder. Feel free to discuss them in the comments section!

  • What do you think of Ricochet’s body language when she is surfing? The video says, “She was a different dog when she surfed with Patrick, totally joyful and 100% committed to her new direction.” Does Ricki look “totally joyful” to you? Does she look like she’s enjoying herself as much as she does when performing service skills or chasing birds? Is that tension and posture just the result of concentrating and balancing, or does it speak to her emotional state? (I really don’t know. I’m not a behaviorist or expert in reading body language, but to me, the only time she actually looks joyous in the water, is when she is off the surf board and running to her trainer.)
  • Why does Ricochet learn to surf as a puppy if the bird-chasing problem only became apparent when she was an adult? Was surfing a body-awareness exercise all the puppies went through, or was Ricki being groomed for stardom? (Again, I honestly don’t know.)
  • Was Ricki’s bird-chasing habit really reason enough to wash her out? Given how happy and skilled she seems to be at doing service work, and given that the only evidence presented is one shot of her running across a huge expanse of unfenced beach, might it be possible that if she were on a leash or in a fenced area (as is usually required by SD programs) this problem could be managed, much the same way that guide dog schools have to manage graduates who want to chase squirrels?
  • Were any of the program’s clients (the disabled people waiting for dogs, which for almost all programs is years of waiting) consulted as to whether they could handle a dog with a lot of prey drive? Doesn’t the decision by the (apparently nondisabled) trainer that Ricki’s prey drive would be “a risk to a person with a disability” sound a lot like, “keeping this dog for myself for their own good” as opposed to including PWD in the decision? Personally, Ricki’s the kind of problem I’d welcome (especially since I’ve already had three squirrel-chasing dogs and a current bird-obsessed dog)!
  • Given that Ricki has now raised hundreds of thousands of dollars for various causes as a staff member of this AD organization, will videos like this inspire other AD programs to train star dogs to perform publicity stunts as a fundraising gimmick?
  • The video’s message is that the trainer washed Ricki out of the program so she could just “be,” so that Ricki would be happy and chase birds. In what way does surfing resemble chasing birds? Given how people-oriented this golden is — the two times she looks happiest as an adult in the video are greeting Patrick and reuniting with her trainer — why is surfing a more desirable career for her than partnering with a disabled person? How is she just “being” as a working fundraising-trick dog any more than as a working service dog? Why is surfing with a PWD to provide balance (or surfing for the cameras and in contests) suitable work for this dog, while retrieving items and opening cupboards wasn’t? If the trainer wanted Ricki to truly “follow her bliss,” why didn’t she rehome her with a hunter, so Ricki could be a gun dog, and chase birds as her job?
  • Do you think the narrator’s “inspirational” lesson about how, when she let Ricochet just “be,” the dog “flourished,” and the narrator realized, “She’s perfect just the way she is!” Is intended to extend to Ivison? Or is the take-home lesson the opposite — that while the dog is perfect just the way she is, the PWD, Ivison, has to struggle to become nondisabled in order to achieve his potential?
  • How do fundraising considerations, and a history of paternalism, affect decision-making about dog placement in programs run by nondisabled people?

Enough questions to make you think. On to my main focus — the two themes I started with:

  1. What it was like for me, personally, to watch this prodigy puppy wash out while I was struggling to raise a very non-prodigious puppy for myself, and
  2. The most blatant of the disability tropes that surround the representation of Patrick Ivison in this video.

No, My Worst Nightmare Does Not Bring a Smile to My Face

If you had charted my feelings when I first watched this video, here’s what it would have shown. First, I was interested. “Ooh, something about training and service dogs. Sounds good.”

Then, I felt excited, thrilled, happy — watching Ricochet as a young puppy looking like she is having the time of her life; when she is training, her body language is full of happiness and enthusiasm. The trainer uses positive methods. So far, this is legitimately inspirational for those of us training SDs about how well it can go. “Wow,” I thought, “I wonder if my puppy will be as smart and motivated as that! My first time starting ‘from scratch’ — with a puppy instead of an adult! Look at the possibilities!”

So much hope, and so quickly dashed: “What’s this? She’s not graduating? Just because she chases birds off-leash? WTF?”

That’s when the disbelief sets in: “No! This magnificently smart, eager, talented, raised-from-day-one puppy washes out? What the hell chance do I have? This can’t be happening! That dog on the screen is the epitome of a SD!”

Then, with the surfing comes confusion: “She does not look happy on that surf board. And why was she being trained to surf as a puppy if the surfing came in when she was pulled from the program? Why is surfing the answer?”

When Ivison entered the picture, I regained a little bit of hope. Maybe the two surfers — human and canine — would pair up. Maybe Ricochet would be placed with him and be a service dog after all — a SD who assists with surfing, as well as other tasks — a win-win for everyone! My optimism turned sour at the media spectacle, and the realization that Ricki and Ivison’s pairing was a fundraising stunt.

By the time the “physical therapy” session closed at the end, I was in shock. I felt disgusted. I felt scared.

Why did this video rattle me so?

It is the lurking fear of most PWDs training our own assistance dogs that, after years of intense physical, mental, and emotional work — time, money, and unbelievable emotional investment — the dog will not be fit for duty. The reasons a dog can wash out are almost endless: a health condition, a temperament problem, or some of the personality traits I’ve been struggling with in my own SDiT.

Not that I or any other partner-trainer I know spends all our time fretting about this. We get on with the work, but it also informs almost every decision we make, because we are trying so hard not just to train the perfect SD, but also to prevent training a washout.

I am, after all, training my third SD, and this is the first time I am seriously considering that I might be facing a washout. When I was a student and teacher of self-defense, we had a saying: Feel the fear, and do it anyway. That is what it is to owner-train an AD. We take on this enormous project upon which so much rides, knowing it might all fall down, and we do it anyway. Many of us do it time after time, even after washouts. But it takes a serious toll.

I’ve recently come to realize how little people who are not in my situation understand what’s at stake for me — even close friends and family. A couple of days ago I told one of my PCAs that I might be washing out Barnum. As everyone does, her first question was if I was going to keep Barnum. I told her that was my intention.

“Well,” she said, laughing with relief, “that’s the most important thing.”

I just turned away. What was I going to say? “You’ve worked for me five years, become like a member of my family, helped raise and train Barnum, and you’ve just told me you have no understanding of what his role is supposed to be? This huge part of my life, functioning, and identity isn’t visible to you?”

Here is the best analogy I can come up with for training your own SD. Imagine spending over two years, devoting most of your time and energy every day to creating the most complex piece of assistive technology you can imagine. It’s a combination multi-function piece of assistive technology, spouse, and medical treatment.

This technology will combine medical benefits, providing pain relief, fatigue reduction, protection from chemical exposures and exertion, anti-anxiety and anti-depressant medication without side-effects. It also will act as a communication device when you’re speech impaired and for distances when you are immobile; it is mobility equipment, powering your manual chair when your powerchair is unavailable, acting as a PCA to help you transfer or steady yourself. It has a panic button, alerting others to your need for help or providing you the phone. It acts as an extension of your arms and legs, allowing you to make a meal or leave the house or leave your bed or carry on a conversation you otherwise couldn’t do.

Along with all this, it is a combination best friend, spouse, roommate, and child, so you are also trying to foster the perfect relationship. This “project” is worth tens of thousands of dollars in labor and materials.

You work on this combination ultimate medicine, environmental control unit, and marriage for years, knowing that at any time, something unforeseen that you have no control over — an attack by another dog, a genetic mutation, an illness, a behavioral problem, or just a combination of subtle factors that add up to a unit that malfunctions on occasion — will cause the whole project to implode.

Then you’ll have to decide, do you start over again? Do you give up? Do you make do with a technology that can only provide some of what you need and may prevent you from getting the whole package from another model?

Meanwhile, everyone who knows you — often people who only have heard about this project you’re working on — are invested in the outcome, even when they try not to be, because they know it’s so important to you, and they have developed an affinity for your project and have their own feelings about it. They judge your abilities to create this magic machine. If you say you think the machine might be malfunctioning, they tell you your judgement is impaired because you liked the previous model so much.

So, not only do you have the pressure of all that you need and want in increased safety, freedom, independence, functionality, and reduced pain and fatigue riding on your success, you have this intense emotional bond that you need to consider breaking, and your own uncertainties and deeply conflicted feelings about your abilities to be objective in evaluating the performance of this combination medical equipment and life-partner. You have people eager to tell you that this or that potential major flaw in the machinery is really not as important as you say. You have other people who are ready to say, “I told you so,” and point out how, as a disabled person, you really have no business trying to create your own magic machine, you should leave it up to the (nondisabled) professionals who have been building these machines for years and know what’s best for you better than you could ever do. (After all, you’re disabled! You can’t possibly be competent and objective about your own needs!)

All of this is built-in to the process of training a SDiT for me, and — except for some of the particulars about type of service work and impact on functionality — for all partner-trainers. This comes with the territory every time I train a SD. But, some unique issues were facing me when this video started arriving in my inbox so often.

The timing was disastrous. The video went up two days before Gadget died and went viral in short order. Thus, people started sending it to me when I was utterly wrecked by grief, longing, despair, and frustration at suddenly losing so much of my functionality. Seeing Ricochet, this fantastic SD, being withheld from a PWD on a waiting list was very painful.

However, even worse was when I was still getting the video after Barnum was a few months old. Of course, I chose not to watch the video most of the times it was sent to me, but since many people didn’t name the link before they sent it, I didn’t know what it was until I’d clicked on it and it had opened.

There I was, struggling with a pup who was the same age or older than the puppy prodigy on-screen. While I watch Ricochet turn on lights, open doors, and unzip sweatshirts, I’m all-too-aware that my SDiT is still peeing and pooping in the house, showing stress and confusion when asked to “down” and “sit,” and jumping on and mouthing people’s shoes or hands or pants. Seeing Ricki washed out was a very, very bitter and scary pill to swallow.

The “Charitable Cause”

This is delicate ground to tread, and I do not want to contribute to the oppression of another PWD. Before I discuss the second half of the video, I want to make clear that I know nothing about Patrick Ivison, his wants, needs, priorities in life, or how much influence he had in the creation of the video.

I’m discussing this video as a piece of influential media (it has been viewed over three million times), not Ivison or his decisions, which are his own business. Whether, or how much, a PWD seeks out treatments or cures is highly variable and can depend on many factors, including the type and severity of the disability, the person’s resources for accessing treatment, the age of the PWD, the likelihood of success, and many other issues. It is always the individuals’ right to seek their own path and to speak for themselves (or to choose not to speak) about why they have chosen it.

Now, on to the second reason why I hated receiving links to this video over and over. The first reason is that it brought up grief and a real sense of isolation from people who I thought knew and understood me.

The second reason is more straightforward: The video in itself is a smorgasbord of ableist media tropes. It’s a manipulative schlockfest that manages to combine the posterchild, supercrip, cure, charity, and Tiny Tim tropes, all in five minutes!

Since the first word of the title is “Inspirational,” it’s no surprise that the video pulls out all the stops to tug at the heartstrings using all the old standbys — the sappy music, the adorable puppy, the kid with a disability reaching for a cure with the help of various charities, etc. In fact, the blurb under the video on youtube starts with “Kleenex Alert!!”

Given all this, I find it hard to believe what the videomaker told me when I asked her if there was a transcript of the video available.

She said no, because she had just made the video for a few friends. It totally surprised her that it went viral!

Really? She owns a dog whose job it is to raise money through publicity events, and she created a video (with music, titles, news clips, etc.) about that dog, and she titled it, “Inspirational Video,” and included all sorts of web links — just for her friends to enjoy?

The biggest problem is how the video handles its main human subject — Patrick Ivison. First of all, we’re introduced to Ivison as one of Ricki’s “charitable causes,” which strips away a certain amount of his personhood: “Her first fundraiser is for a 15 year old quadriplegic surfer, Patrick Ivison.”

Also note that his disability status comes before his name (although at least his occupation — “surfer” — and age are given equal weight). Ivison, who could have been featured as a promising young athlete, is instead an object of charity and spectacle — and unlike Ricochet, who at least has her (speculated upon) desires and feelings taken into account, we learn nothing of what Ivison actually wants.

We can infer — and I certainly hope — that his interest in walking again is the reason that the money was raised for “Helping Patrick Walk” as opposed to providing him with products or services that would improve his life in the here and now. We can only infer that the organization somehow learned of his desire to try this experimental, out-of-pocket physical therapy which costs $100 per hour and approached him. Not that he approached this organization for a service dog and they offered, instead (or in addition) for him to try to walk.

Regardless of what was going on for Ivison, the fact that Ricki’s handler chose “helping a paralyzed person walk” as her first fundraiser is nauseatingly typical of what is seen as a worthy disability “cause.” The public seems to be the most interested in providing financial assistance to PWDs if it’s to try to make them into nondisabled people, especially the holy grail of posterchild fundraising — for a wheelchair user to walk again. (And after the video went viral, several thousand more dollars were raised.)

How about having Ricki surf to raise taxes and awareness to pay for safe and accessible housing for low-income people with disabilities? Or to allow the Justice Department to sue the millions of public venues or providers that are not in compliance with the Americans with Disabilities Act? Or for food, assistive equipment, health insurance, and improvements to disability benefits programs, which would provide a better quality of life for all disabled people? Not so popular as a glimpse of a blond surfer dude taking a few steps while flashbulbs pop, apparently.

I can’t believe I didn’t actually see this coming as the culmination of the Kleenex alert. Because the narrator is someone who works with PWDs, and because she uses person-first language about PWDs in her narration, I had actually hoped that Ricki was raising money for something that would increase Ivison’s autonomy, joy, or independence in the here and now — something that was not focused entirely on his disability but on him as a whole person. I had thought (silly me), that it might have to do with his surfing — like a new surfboard or wet suit or surfing camp (if such a thing exists) or something. Maybe, as I mentioned before, that Ricki and he find they were a great match as a SD team, in the water and out. But no.

Another familiar problem is that Ivison is never quoted, never speaks for himself in any way (except insofar as his surfing shows us his surfing talents), but is talked about by the (apparently) nondisabled dog trainer. He is part of the spectacle of Ricki’s flashy fundraising and “human interest story” on numerous TV news programs. There’s no way to know from the video if he was interviewed and got to speak for himself on any of those segments; if he did, there was no sign of it in the video.

I guess I also should have paid more attention to the background music, as the song repeatedly refers to “standing tall” and “learning to walk. . . .”

The fundraising “allows amazing things to happen!”

Cue images of Ivison’s PT, which is unlike any therapy session I’ve ever seen before. Dozens of people line either side of the carpet on which Ivison and his therapist labor. Cordoned off by maroon velvet ropes like those for a red-carpet affair, onlookers cheer, clap, and take pictures while Ivison concentrates and sweats.

Ivison is obviously working his ass off — and props to him, I hope his therapy is successful and brings him joy — but I wonder how he felt about his PT being a media circus? If he could have gotten the money for PT without having to be a star attraction, would have chosen that?

Regardless — again, judging this just as a piece of disability representation — the world certainly needs no more encouragement to stare and gawk at PWDs, to take our picture for something that nondisabled people take for granted (PT), and to make our everyday lives into inspirational media events for nondisabled people to weep over, as they pity/adulate us.

Please, Think Before You Link

I’ve run out of time, and you’ve probably run out of patience.

I’d like to make two requests. One is that when you see something about assistance dogs, consider the context and the difference between what an owner-trainer, like me, goes through, versus what a nondisabled trainer who is working for a program experiences. They are not relying on the dogs they are training to be their assistants! It is hard enough to be a SD partner and then lose the support and assistance of your dog. To lack that support while using every bit of time and energy you have on training a dog you hope will one day return the investment is even harder. The losses surrounding a partner-trained dog washing out are massive; there is nothing comparable for a nondisabled trainer.

An essential element to the disparity is also that programs are businesses. They get money through fundraising, and many of them charge disabled clients for their dogs, as well. The trainers are getting paid for their work. In most cases, the trainer is not personally investing all their own time and money and energy into one dog — they go to work, work with several dogs, and go home. In most programs, although this is not the case with the handler/trainer in the video, puppy raisers are used, so the trainers don’t even have to work with puppies who are having toileting accidents, chewing up the house, and other difficult puppy behaviors. They receive a dog who has good manners, basic obedience, and has been well socialized. Then they evaluate if the dog seems suitable for further training before proceeding. This culling process allows them to work with the cream of the crop, avoiding the messiness of the puppy years.

When someone sends me this video, it slams a door on whatever connection or understanding I thought we had. I realize they comprehend almost nothing of what I’m going through in dedicating my life for at least two years to raising and training my SDiT, to the exclusion of almost everything else. Most people seem to think training my own SD is a fun little hobby — a way to keep me occupied with dogs, because I’m a dog lover. Even my family didn’t “get” how essential my SDs were to me until — ten years after I’d trained my first SD — my mother spent a week with me when I was extremely ill and saw the number of things my (second) SD made possible for me, all day long, every day.

The second request is that the next time you read an article or see something on TV or in the movies or on the web about a person with a disability, ask yourself if they are being portrayed and treated like any other person — like a nondisabled person? Does the storyline (whether fiction or nonfiction) follow one of the common ableist tropes I outlined above? If so, please don’t forward it on to all your friends with a note about how moving it is and how it made you cry. Instead, write to the creator of the piece and ask them to go to the BADD 2011 page and educate themselves about disability oppression.

Thank you for reading this very long post!

– Sharon, the muse of Gadget, the spirit of Jersey, and Barnum (SDiT? and Bird-Watcher!)

Waspish Wednesday: Yes! I DO Know How to Operate My Powerchair!

I’ve decided to start a new series, called “Waspish Wednesday.” These will be short posts that will tell readers that, “Hey, that thing you do/say because I’m disabled? You can stop now.”

Today, I went to the doctor. Not to put too fine a point on it, but I hate this doctor. If I never had to see him again, it would be too soon. He’s the only person on the planet I’ve ever threatened with an ADA lawsuit (and I meant it, too).

However, this particular thing that he said, and that he has said every single time I’ve seen him in the decade I’ve gone to his office using a powerchair, is — sadly — not unique to him. It is ubiquitous in medical settings: doctor’s offices, hospitals, even occasionally home visits (VNA or home draw programs), etcetera.

Here are the people I happen to remember who have said this to me: PCPs, surgeons, interventional radiologists, MRI technicians, nurses (of all varieties), office staff/clerical, phlebotomists/lab technicians, and every specialist imaginable.

What happens is this. We are about to leave or enter an office or corridor, or we need to reposition ourselves in an exam room, operating theater, or blood draw cubicle, and I move.

“Hey!” They say, in a tone that is half amazement and half amusement. . . .

  • “You really know how to corner in that thing!”
  • “You really know how to move in that thing!”
  • “You’re really good at that!”
  • “Wow! You can turn on a dime!”

They are jocular and seem pleased that they have been able to serve up this compliment, that they have noticed this rare phenomenon and can point it out to me.

What I want to say, but never do is, “Yes! Isn’t it amazing that I know how to operate the mobility device that I’ve used everyday, all day, for several years? This powerchair that I use inside my non-wheelchair accessible house, everyday, for years?”

Or, I could say (but don’t), “Actually, I’m pretty sucky at it. You should see the inside of my house, where every doorway is splintered and chipped, where every tight corner has had the plaster dinged all to hell, where I took the strip of molding off the bathroom door (and we never even bothered to put it back), and where the plates of protective Plexiglas are splintered where I hit them!”

Or, I could say (but don’t), “Yes! And look at you! You are walking! You really know how to ambulate! You can really move on those feet! You sure know how to work those legs! Good for you!”

What I say when I am in a really good mood or I really like the person, is, “Thank you.”

Otherwise, what I say is (nothing).

I have not been happy with either of these options. So, now I’m saying something else:

Hey! General public! Please stop acting like a disabled person’s ability to use the mobility equipment we use every day to get around is a big freaking deal! Or we might just start telling you, in a congratulatory and avuncular manner, how impressed we are that you know how to operate your shoes.

Thank you.

– Sharon, the muse of Gadget (I looooved to run next to the chair), and Barnum (SDiT?)

AD Blog Carnival and BADD Reminders

Attention, bloggers!

Two reminders/announcements:

First, if you have anything to say on the subject of “Reactions” in relation to assistance dogs (guide dogs, hearing dogs, and all types of service dogs for people with physical, psychiatric, or cognitive disabilities), please consider including your post in the upcoming Assistance Dog Blog Carnival, hosted by The Trouble Is… You can find details about the theme and the deadline on her website. I’ve  already read some of the early entries, and it looks to be a fun and thought-provoking one!

Secondly, May First is annual Blogging Against Disableism Day, hosted by Diary of a Goldfish. This is an amazing blogswarm that happens every year; it started in 2006. Bloggers from around the world write a post in some way striking a blow against ableism/disableism.

Here’s what Diary of a Goldfish said last year:

This is the day where all around the world, disabled and non-disabled people will blog about their experiences, observations and thoughts about disability discrimination. In this way, we hope to raise awareness of inequality, promote equality and celebrate the progress we’ve made.

Goldfish has archives of all the past BADDs. Amazing stuff!

My post last year was Q&A on Being an AD Partner. You can write on any topic you want — employment, housing, relationships, discrimination, assistive technology, family, education, medical care — the list is endless. It only has to be something that will bring to light or discuss some aspect of ableism.

Note that for both the carnival and the blogswarm,  you do not have to be disabled, nor does your blog normally have to address disability issues, to be involved. You just have to write on the theme. Allies are a very important part of the disability rights movement, so allies’ contributions to BADD are very welcome, too.

There’s been a post I’ve wanted to write for a year, and that’s what I’ll be working on between now and May 1, so if I don’t post much, that’s part of the reason.

Another reason is something I will post about soon. I’m grappling with a big decision, and I’ll share that with you.

– Sharon, the muse of Gadget, and Barnum

My Lyme Disease Is Not the IDSA Lyme Disease – Sharon Wachsler

This past Wednesday, December 8, 2010, the Chicago Tribune published a lengthy article called “Chronic Lyme Disease: A Dubious Diagnosis.” This article is so biased and filled with misinformation, I need to respond. (As  you’ll see at the bottom of this post, I’m not the only one.)

The article’s central claim supports the stance of the Infectious Disease Society of America (IDSA) that chronic Lyme doesn’t exist.

[The IDSA concluded that there is] “no convincing biologic evidence” for a Lyme infection that persists and continues to sicken despite the recommended treatment, usually a few weeks of antibiotics.

My experience, and the medical evidence that is part of my experience, contradict this dangerous and preposterous notion. Here is my own Lyme disease story (which will act as Part II of the Lyme Awareness Month post from May 2010, when I promised to describe how Lyme has affected me, and what you should know about it).

Summer of 2007

My case is a little different from the typical “How I Became Disabled/Ill” narrative because I was already disabled by chronic illness before I got Lyme disease. I usually try to avoid comparisons among disabilities, but I have to speak the truth: What I have gone through with Lyme disease has been much, much worse than what I experienced in my previous decade of chronic illness. I would gladly have my other illnesses double- or triple-fold more severe if it would rid me of Lyme. I’ve lost parts of my life and myself to Lyme I didn’t know it was possible for me to lose.

Here’s how it started. One day, I was sitting on the couch watching TV, absent-mindedly running my hands through my hair when I felt something sticking out of the nape of my neck. After living in the severely tick-infested area of rural Western Massachusetts with two dogs, I immediately knew this was a tick, although it felt rounder and much smaller than I was used to. Nevertheless, I wanted it off me; I didn’t want to wait to mess around with mirrors and tweezers, so I handled it as I did the dogs’ ticks — I grasped it at the base and pulled.

I heard the “pop!” that occurs when a tick is removed that’s been embedded, and as I had pulled at an awkward angle — my hand behind my head — I dropped it. Into the sofa. The falling-apart, loose-foam, shredded-upholstery black-hole-of-a-sofa. I tried to find it, but I never did.

I was pretty sure it had been a tick, but I wanted to see. I was hoping I had just pulled off some random, weird thing that was not a blood-sucking insect. However, when I checked in the mirror (two, actually, since it was on the back of my head so I couldn’t see it without a second reflection), there was a large, dark-pink raised area with a bloody center — just like how it looks if I pull an embedded tick off my dog. I cleaned it and hoped for the best.

I checked it again over the next couple of days. The area was flattening out, the scab was healing. My (mis)understanding at the time was that if one contracted Lyme disease, a bull’s-eye rash would appear immediately at the site. I saw no rash, so I forgot about the bite.

About a month later, I developed joint pain in my fingers. Out of all the symptoms I’ve had with all my health issues, I’ve never had my joints bother me. The pain was bothersome, but not severe. However, I was a writer, and I relied on my hands for work as well as to make up for functional limitations in other areas caused by my disabilities. I was very protective of my hands. I just didn’t want anything to get worse. Fortunately, I happened to have a doctor’s appointment coming up.

At my biannual appointment with my primary care physician, I mentioned the joint pain. She thought it was probably a worsening of my other conditions, but suggested a couple of tests, including one for Lyme. That set off a bell in my head. I remembered that thing that I had pulled off the back of my head. When I got home, I grabbed my hand mirror and went to look in the mirror over the bathroom sink. I parted my hair and looked at the area where the bite had been. It was flat now — no more bump — but it was definitely discolored. It was red.

I looked up Lyme disease online and discovered that the array of symptoms I’d been experiencing in the last couple of weeks were classic of Lyme — not just the joint pain and the rash, but the new kinds of headache and vertigo, the drowsy fatigue, the constant ache in my neck and shoulders, and more. Crying, I got out my dog-grooming clippers and shaved off the hair in that area so I could be certain of what I was looking at. I compared it to the pictures of erythema migrans (Lyme rashes) I’d seen online. Bull’s-eye.

Well, metaphorically, at least. Some EMs look like bull’s-eyes, but they are just as likely to be roundish, red rashes. I knew this was serious.

Large reddish-pink splotchy rash on the back of Shaved headLyme Rash

My Lyme rash (EM). The clear spot in the middle is where the actual tick was attached.

I called my PCP and told her about the tick bite and symptoms. Because I’m allergic to tetracycline, a relative of doxycycline, the frontline drug for Lyme, the doctor prescribed the second-best antibiotic for early Lyme, amoxicillin. I read all the comforting information by the Centers for Disease Control (CDC) and the IDSA that Lyme, when treated promptly, responds quickly and completely to appropriate antibiotics. I had heard of chronic Lyme, but my impression was that this was a disease that only occurred if one went years without treatment after infection. I also thought of it as a mild disease, more of a nuisance — some joint pain, maybe a little fatigue, but not a big deal.

“Something Curable and Non-Controversial”

I focused on the information on site after site that said prompt diagnosis and treatment would cure me. I even told my friends and family, who were upset and scared to hear I’d contracted Lyme, “At least I have something curable this time!”

I meant it. Yes, I was scared. I didn’t like having a frightening disease given to me by a disgusting tick, but I felt almost giddy with relief that now I would be on the road to recovery. This was just a bacterial infection. Antibiotics kill bacteria. Within a couple of months, I’d be back to normal.

It was also a nice change of pace to have a disease that seemed to be without controversy. Lyme was caused by a known microbe; nobody disputed that. Unlike my other diseases, whose etiology was still being pieced together, this time I would not have to hunt for a physician who knew how to diagnose and treat me.

I stayed on the amoxicillin. Initially, I got much sicker (which I now know is a Herxheimer, or die-off reaction), and then most of my symptoms started to improve. But not all of them. My PCP kept me on amoxicillin. Weeks turned into months, and some of my symptoms, including my rash, persisted. Different antitibiotics just made me worse. I became much sicker.

Thank God I had that rash.

Doesn’t that seem like a strange thing to say? That’s because in the hellish time to come, the rash would be the one piece of incontrovertable truth that the tick bite had occurred and done damage. It was proof of infection, proof that something wrong was left behind, something visible on the skin.

In November, I became suddenly and drastically worse. The light- and sound-sensitivity and headaches became all-consuming. The musculoskeletal pain was unendurable. I developed neurologic symptoms, including intermittent vocal-cord apraxia (inability to speak) and functional paralysis in my arms — and more often — my legs, severely compromised cognition, and behavioral and mood changes.

I was so weak that I couldn’t leave my bed and had to use my powerchair to get to the bathroom. I needed help to brush my teeth, eat or drink, get in or out of bed. I had trouble breathing and eating; I lost thirty pounds.

I started searching for a doctor who could help. None seemed able to intervene because none of them were convinced, entirely, that my illness was caused by Lyme. Why? Because all of my Lyme tests were negative. I soon learned that this was meaningless; Lyme tests are notoriously inaccurate for producing false negatives. I was tested over and over for multiple tick-borne diseases by multiple doctors as I started seeking more answers. All bloodwork returned “inconclusive” or negative.

However, the CDC officially states that blood tests are not to be used as primary diagnostic tools for Lyme. The IDSA and CDC both say that the presence of an EM rash is 100-percent proof of Lyme infection, and that treatment of patients with EMs should begin immediately; blood tests in such cases are optional.

That’s what they say. Officially. However, none of the doctors seemed to know this. . . .

“Lyme Can’t Cause This.”

I was desperately ill and scared. My friends and family were afraid that I was dying. Yet nobody could come up with a diagnosis. Physical exams and blood tests showed abnormalities, but nothing gave a conclusive answer as to the why.

The only thing we knew that had been added to the mix was Lyme disease, and that was now being dismissed because (1) all my blood tests for Lyme were interpreted as negative (despite that all my lab results say right on them that the test is not conclusive and that clinical evidence must be taken into account), and (2) my doctors were as uninformed about Lyme disease as I’d been.

“Lyme can’t do THIS,” I heard again and again, as each doctor rushed me out of his or her office. Most knew something physical was truly wrong, yet I still heard suggestions for psychiatrists. Doctors who had known me for years treated me like a scary stranger. I was told to find out what was wrong and then come back. Some refused to see me altogether.

Yes, I had had Lyme, the doctors agreed, that was not in dispute, but since I’d been treated for it (actually, according to IDSA standards, I’d been overtreated for it), it could not possibly be the cause of my myriad symptoms. My Lyme was cured. So, all of this suffering and blatant physical dysfunction that occurred immediately following infection was just a coincidence. Besides, everyone knew Lyme just caused some joint pain, headaches, Bell’s palsy, etc. It didn’t make you unable to speak or lift your foot. It didn’t create such agonizing pain that it literally immobilized you. It didn’t destroy your life, like whatever this was.

Thus, in February 2008, my Lyme doctor stopped treating me. She knew I was sick, but without a positive test result, she said she couldn’t “justify” continuing to prescribe antibiotics. I didn’t know at the time that doctors who treated patients with Lyme beyond the IDSA’s “guidelines” were in danger of losing their licenses, losing insurance coverage, and even criminal prosecution. I just knew I was being abandoned.

I spent nine months without treatment, unable to talk, stand, feed, toilet, or bathe myself. I was in excruciating pain, nauseous, dizzy, and couldn’t tolerate any sound, movement, touch, or light. I had migraines around the clock. I had psychological symptoms I’d never had before, altering my personality, and causing me to lose most of my friends.

During this time, not knowing what else to think, I eventually began to believe the doctors. They said this wasn’t Lyme, therefore it must not be Lyme. I didn’t know what it was. I just was holding on for dear life.

I had one friend who had gotten Lyme around the same time as I had. Luckily, her test results had been positive, though she did not remember a tick bite. She was absolutely convinced that my symptoms were caused by Lyme and coinfections. She sent me printouts of Internet Lyme forum posts from other people who’d lost their voices, who couldn’t stand or walk or had tremors, and on and on. She begged me to get retested.

“Positive”

Physically and emotionally, it took everything I had to get retested. In October, 2008, I was again tested for antibodies to the spirochete that causes Lyme, as well as for three other tick-borne diseases. I couldn’t bear the thought of the results coming back stamped, “Negative, negative, negative.” It would be the end of hope. But, I needed someone who was in a position to help me heal to finally know the truth, and this seemed the only way. I had to risk it.

I remember sitting in front of the fax machine, slumped over with exhaustion in my power wheelchair, as page after page came through from the lab.

  • “Western Blot, Borrelia burgdorferi” (the microbe that causes Lyme), “Positive.”
  • “Lyme disease — Confirmed by Southern Dot Blot, Positive.”
  • “Babesia microti” (another tick-borne disease), FISH (a test that shows the presence of the parasites’ RNA in my blood), “Positive.”

As the positive results came through, I cried and cried. Finally, answers. Finally, “evidence” that I wasn’t “crazy.” Over a year-and-a-half after infection, the combination of antibiotics goosing my immune system into producing enough antibodies, and the time that allowed the organism to multiply in my blood and tissues had led to proof: positive blood tests for Lyme and babesia.

Based on these results, my doctor started treating me again. She said she was “thrilled that now she could finally help me.” I can only assume that she had been afraid to risk it before, to risk her practice, because of the politics.

With these two diagnoses came a third — Bartonella. I had almost all of the symptoms, and it is even harder to get an accurate test for this infection than for Lyme. In light of the proof of existing tick-borne disease, my doctor now made a clinical (symptom-based) diagnosis of this third infection. Bartonella seemed particularly likely to be at the root of the psychological symptoms that had cost me my sense of self and most of my support system.

Thus began a grueling treatment regimen, with herx reactions so strong that they usually lasted for several months. Now I am slowly — very slowly — getting better. I’m still not back to how my life was. But I can do more, I suffer less physically, and my personality has been returned to me. I have hope.

“Dubious?” How about “Definitions”?

The IDSA says there is no evidence for chronic Lyme infection that persists after their recommended treatment of 28 days of antibiotics.

My body — my story — provides the evidence that the IDSA is wrong.

Let’s break it down, definition by definition:

  • Evidence: It should be enough for any practitioner to have seen me to know that I was physically ill (and, indeed, that’s what they saw and various blood tests and exams showed), but since clinical common sense was not enough, let’s look at the evidence that takes the human factor out of the equation. We have my EM, at the site of a tick bite. That’s evidence that the CDC and IDSA don’t even dispute. We have the multiple blood-test results that show that one-and-a-half years after infection, the microbes and antibodies were still in my blood. Evidence? Check.
  • Chronic: Chronic disease refers to a persistent and lasting medical condition. In some cases, I’ve seen cut-offs of months or years used to define chronic. Six months is sometimes used, or a year. I had positive test results of infection twenty months after exposure. Three-and-a-half years later, I’m still sick. Chronic? Check.
  • Infection: Here’s a good definition of infection. “The pathological state resulting from the invasion of the body by pathogenic microorganisms.” Borrelia burgdorferi, “the Lyme bug,” is a bacterium in the spirochete family, similar to the microorganism that causes syphilis. Babesia microti is a parasite that causes babesiosis, similar to the parasite that causes malaria. Infection? Check.
  • Persistence of illness after IDSA’s protocol has been performed: I was on amoxicillin from July 2007 through October 2007 and cefuroxime from October 2007 through February 2008. That’s a lot more than 28 days. Yet, as is clear from the evidence of chronic infection above, I was still sick. Persistence? Check.

So much for my easily curable, noncontroversial illness. That’s the IDSA Lyme disease, not my Lyme disease.

I sure wish the gap between the two wasn’t so wide. I sure wish my illness had been quickly and easily curable.

If the IDSA’s picture of Lyme matched the reality of it, that tick bite would have faded, along with my rash, to a distant memory.

If that had been the case, not only wouldn’t I have had to suffer the physical damages of this illness, I wouldn’t have to write a blog to counteract misinformation claiming that my experience doesn’t count, and that my disease doesn’t exist.

Thank you for reading.

-Sharon, the muse of Gadget (who also had Lyme, and who also required treatment much longer than he was “supposed to” have), the spirit of Jersey (who seems to have escaped the plague), and Barnum, who gets tick-checked every night from March through November and has had over 60 deer ticks found on him in his first year alone in rural Massachusetts

P.S. Please support this effort. Comments are very welcome. I also encourage you to visit the following other bloggers who say “My Lyme Disease Is Not the IDSA Lyme Disease.”

I believe Ashley spearheaded this effort; she is a fierce and eloquent advocate for Lymies. Some of the other bloggers also have MCS, like me. Candice is one with severe MCS and food allergies, and a moving story. Heather’s tale is one of the most compelling I’ve ever read, on any topic; please read it.

Hospital Access FAIL

This is not what I want to be writing about. I want to be activisting about the horrifyingly biased, unresearched, and clearly bought article the Chicago Tribune published recently saying that chronic Lyme disease doesn’t exist. (I am not linking to it because it does not deserve any more attention than it has already gotten. The wankers.)

As you can tell, this has me pissed off, because this nonexistent illness has been fucking with my life a lot this week (as well as for the last few years). But for right now, let’s focus on this week. Let’s just focus on the last couple of days.

There has been vomiting. There has been severe pain and immobility. There has been vocal-cord apraxia — the inability to produce speech — which is a prominent player in my story. There have been many nights where I barely slept at all, such as last night, when — after I recovered from violent puking — I slept from 3:45 AM to 5:00 AM, and then later from 1:00 PM to 2:30 PM.

This second round of sleep — if you can call it that — was filled with nightmares of me trying to reach my doctor or communicate with my visiting nurse, and it all going wrong. I repeatedly woke with a gasp and my heart pounding. Which was all true to life.

So, what, you may wonder, is this all about?

First part of background: I have a PICC line. I am very grateful for my PICC line because it is part of what saved my life when I was being eaten from the inside by bacteria, parasites, and other microbes, otherwise known as Lyme disease, babesiosis, and bartonellosis. It has been part of the treatment that has vastly improved my quality of life and my hope for a healthier future.

It’s also a pain in the ass that I’ve lived with since August 2009. However, when I had to stop treatment for a month, I backslid in a serious way, and I feel like if I could safely stay on my antibiotics for the rest of my life, and they would continue to reduce my symptoms, it would be worth it, by a long shot.

The second piece of background: The medication that I infuse through my PICC is called Rocephin, which is an antibiotic. The good part about it is that I have tolerated it (which is often not the case with medications), and that is hasn’t messed up my liver (another frequent medication problem), and that it has worked — in other words, it has helped me get better.

Yay! The only major concern I had is that long-term use of Rocephin can cause gallbladder sludging or gall stones. To try to prevent this, my doctor has me on a schedule of infusing four days in a row and taking three days off, each week. The time off is to give my gallbladder a chance to rest. So far, I hadn’t seemed to have had any gallbladder issues, which was good, as any time in a hospital is really deleterious to my health. When I had to get a liver sonogram a couple of years ago, it set me back several months of functioning.

I’m not going to sugar-coat it: PICCs require a lot of upkeep. Small things can go wrong, and big, life-threatening things can go wrong, and a lot of stuff in between.

This is actually my second PICC. The first time I got one inserted, it was planned far in advance. Because it was planned in advance, I could set up the accommodations to my disabilities I needed. Since my voice often doesn’t work, especially in situations where I am having increased bodily trauma, such as the chemical exposures and exertions attendant with a hospital visit, I usually request an American Sign Language interpreter (ASL terp) for medical appointments. This allows me to communicate much more safely, fully, and effectively, especially because I wear a mask that covers my mouth and prevents others from lip-reading me.

It turned out to be very important to have that terp there that day because I was immobile and covered from head to foot except a tiny portion of my face and my left (non-dominant) hand, so communicating would have been a challenge in the best of circumstances. The interpreter was outstanding. She was working without syntax or grammar — which are read on the face — and with only my non-dominant hand signing.

Six months later I needed to have my PICC replaced because it was blocked. There was no interpreter available, but Betsy usually understands me very well, and her presence alone would be a comfort, so she got dressed in scrubs and came into the operating area with me. The first PICC insertion had taken half an hour. We expected this one to go as well. Instead it went TWO AND A HALF HOURS because my veins went into spasm, and they had to keep trying new veins, after prodding a spasming vein for an hour to see if that would help it relax. (It didn’t.)

And, Betsy only understood about one-eighth of what I said, because she is used to lip-reading me, which she couldn’t do with my face covered. It was pretty traumatic for both of us.

Yesterday, I was doing my infusion, as usual, when I noticed that it was hurting very mildly. I am in such severe pain everywhere on such a chronic basis, I didn’t even pay attention. After infusing, I always need to flush the line with saline and then heparin (a blood thinner that keeps the line clear). Each time I flushed, it hurt very noticeably. This is not normal. It’s never happened to me before.

I called the visiting nurse association (VNA) that is in charge of maintenance of my PICC and described the problem. I expected the nurse supervisor to ask me a bunch of questions to try to determine what might be going on. Instead she said she would have my nurse (who comes every week to change my dressing), call me.

Nurse called. She asked one question, and didn’t ask all the others I thought she would (to assess, oh say, if I was going into septic shock or had a deep-vein thrombosis) and then she said she’d come take a look tomorrow. She said not to flush the line or infuse until then. She also said she’d talk to my doctor the next day.

I wasn’t happy about this because (1) that meant waiting possibly 24 hours for any idea as to what was going on, and (2) my doctor doesn’t work on Fridays. I told Nurse this. She ignored me. I know from experience it can be difficult to reach my doctor when she’s not in the office. And she has no other backup; she is the sole doctor in her practice. If you need to speak to her off-hours, you have to call her personal cell phone, which sometimes she answers and sometimes she doesn’t.

“We’ll reach her through the on-call service,” Nurse said. I gritted my teeth. This was not the first time we’d gone through this situation, but she clearly wanted to be done for the day, and I didn’t have much choice in the matter.

Today, when Nurse did not call to tell me when she was coming (as she always does and had said she would), I called her. She sounded annoyed. She told my PCA (because I couldn’t speak), that I should try a saline flush and see if that hurt. If it did, I’d need to get the line pulled. If not, she’d come over later. She said she’d call in a few minutes to see how the flush went. I flushed, and it didn’t hurt like last night at all, but afterward, it did sting a bit, which is, again, unusual. Then we waited for her to call back, which she didn’t.

So, we called her. We had a pointless conversation, interpreted by my PCA because I couldn’t voice. She said she’d call Doctor and call back. I wanted to tell her Doctor doesn’t have office hours on Fridays, but I had to type whatever I wanted to say so my PCA could read and relay it from the computer screen, and it seemed like too much trouble.

An hour passed, we called her again. Nurse hadn’t heard back from Doctor. Big surprise. I told her again that Doctor is hard to reach on Fridays, and Nurse said that was okay, she’d reach her through the answering service or speak to the on-call doctor. I tried to get across that Doctor is the on-call doctor. The only doctor in her office.

While all of this is going on, Betsy and I are trying to figure out: Does she need to leave work? Does she need to cancel her plans for the evening (that are very important to her) to take me to the ER? We were left hanging, and Betsy was not happy about it, because so many other people would be affected if she had to rush home.

Another issue came up. I started to ponder why I had been doing all this vomiting lately, which is not normal for me. Why all the nausea, the bloating and gas? Was it more than my usual food allergy issues? Could these be gallbladder symptoms?

You already know the answer. I looked up gallbladder symptoms, and I have all the risk factors (really), and most of the symptoms. Now I needed to get a gallbladder sonogram, too. And I needed to communicate this to my doctor right away!

Eventually, at the end of the day, Nurse told me she hadn’t reached Doctor, so she couldn’t officially tell me what to do, but she’d discussed it with the nurse supervisor, and they felt I should go to the emergency room and have the line pulled. I have many reasons — particularly my MCS — for not wanting to go to the ER unless I’m really dying, to take that decision lightly.

I tried to reach Doctor myself, a few times — by email, by message on her office phone, by calling her on her cell, which is the number that the office voicemail gives out for medical emergencies but which she sometimes doesn’t answer. Finally, after my final conversation with Nurse, I called Doctor and she answered. I gave my full name and asked her if she’d heard the messages from Nurse and me.

“Sharon who?” she said. Not the kind of reception I was hoping for. I told her what was going on and that we’d been trying to reach her all day.

“You know Friday is my day off,” she said.

I said yes, I did know, and I’d tried to explain that to Nurse, but she didn’t seem to understand. Then she finally swung into Doctor Mode and asked me relevant questions: Was my arm red? Swollen? Hot? Was the insertion site painful to the touch? Did I have a fever?

When I said no to all of these, she said I didn’t have to go to the ER, I could just get my line replaced. I said I wanted to do it as soon as possible — ideally Monday — at the same time as I got the gallbladder ultrasound. She said she didn’t know if either were possible, but she would call the hospital on Monday morning. I had hoped she would call them right away, but I gave up.

I continued to read about how to heal your gallbladder at home, without having to undergo surgery for removing it, which would be disastrous for my health — both the surgery itself as well as being without an organ that helps detoxify my body. We MCS folks need all the filters our bodies can provide.

It was extremely depressing because pretty much all my other disabilities and health conditions — including dozens of food allergies and sensitivities, my PCA schedule (because they cook for me), and the way I eat to control my cholesterol — demand I follow almost the exact opposite way of eating. I really don’t know how I’ll make it work, but I’m trying anyway. Nobody’s taking my internal organs without a fight, dammit.

Then Doctor called again to tell me I had a 9:00 AM appointment on Monday for the ultrasound, followed by an appointment for PICC line removal and replacement. I’d have to check in at 8:45, and I’d have to fast the night before. Well, that was fine. I was so relieved.

I cried about how exhausted and scared I was to some friends, and then I realized I should try to book an ASL terp, even though it was almost certainly too short notice for them to have one available. I also thought I should mention the MCS and request fragrance-free practitioners, though, again, I knew that was unlikely.

I called the hospital and asked for a terp. Of course, when I was making this call, my voice was working, so I’m sure the switchboard operator was confused, but I didn’t feel like explaining. She looked up my appointments and said, “Oh, those were canceled.”

“What?!” I said. “Who canceled them? Why were they canceled?”

The operator told me that my file shows I need an interpreter, and they had called their one ASL terp to see if she could do the job, but she already had a job at that time, so they canceled the appointments. Without asking me if I wanted them canceled. Without even telling me they were canceled!

If I hadn’t called in, Betsy and I would have shown up at the time we had been told to show up for our scheduled appointments and — silly us! — expected that I still had those appointments. AUGH!

I told her that, yes, a terp was helpful, but it was more important that I have the procedures. “I need to go to those appointments!” I said. “Can’t you un-cancel them?”

She said no, she wasn’t in radiology, she didn’t know their schedule or which appointments they had or didn’t have.

“But you knew about my appointment being canceled and about the interpreter thing,” I said.

“That’s because we book the interpreters,” she explained. “But we can’t make appointments. Your doctor can call in Monday to make the appointments.”

“But then it will be too late!” I said.

She asked me the name of Doctor (my specialist), whom she didn’t know. Then I told her the name of my primary care physician, who is well-known at this hospital. She made an agreeable sound.

“What if I have someone from that practice — whoever is on call tonight — call in and make the appointments?”

“It’s after business hours,” she repeated. “You have to wait till Monday to make appointments.”

She added that the state agency that’s responsible for providing interpreters would provide a terp if I was coming in over the weekend, for an emergency. But since I was trying to come in for an appointment on a week day, they wouldn’t provide an interpreter.

There it is: Because the hospital couldn’t meet all of my access needs, it responded by denying me the medical care I need, without consulting me about my wishes or needs, and without even telling me that they’d taken this pre-emptive step.

If I were Deaf, the option of making do without a terp would likely be even more of a hardship (since I can hear/understand what’s being said to me in spoken English; I just can’t respond). I also didn’t need a relay or interpreting service to make the call, which I know from experience makes everything much, much harder and longer and more complicated.

Be-that-as-it-shouldn’t-be, I had to call Doctor again and apologize for bothering her in the evening on her day off again, but that the hospital had canceled both my appointments, and could she please call the hospital and make the appointments again. I also asked her to stress to the hospital that while I prefer to have an interpreter available, they should not cancel my appointments if they can’t provide one! Fortunately, Doctor was very nice about it.

So, assuming my symptoms don’t continue to mount and I end up in the ER anyway, very, very early Monday morning, Betsy and I will be packed and ready to go, waiting for a call from Doctor to let us know if she was able to book those same slots, in which case we’d need to haul ass up to the hospital. Or if we were going some other time.

I could just vomit. But I hope I don’t,  because I’m getting tired of that.

One Lovely Blog Award

I was absolutely delighted to get a note the other day from Nessie, the blogger at Lipstick, Perfume, and Too Many Pills (a sick girl’s quest for normalcy) telling me she’d honored me with the One Lovely Blog Award!

Here it is:

One Lovely Blog Award

Award and Art by Sara Faghani

Thank you, Nessie! Please visit her site and check out what she says about After Gadget and the other blogs she named.

The award was created in December 2008 by Sara [access note: following link automatically plays music] of Works of Art by Sara.

Here are the rules of the award, according to Sara:

1. Add the logo to your blog.
2. Link to the person from whom you received this award.
3. Nominate 7 or more blogs.
4. Leave a message on their blog, letting them know they are “One Lovely Blog”!

This is a terrific opportunity to point you to some fabulous blogs. I was afraid all my faves would already have been honored, but lo! ‘Tis not so! I am thrilled to be able to give back a bit to these blogs that have given me so much. It’s also been a lot of fun to stray from my usual topic of life with (and without) dogs.

Before I give my list, some brief explanation of how I picked. Most awardees say to pick blogs that haven’t already received the award and that are “recent discoveries.” Since I only started reading blogs around the time Gadget died, all blogs are recent discoveries for me!

I’ve noticed that others who give their picks often tend to pass the award on to other blogs with similar themes, e.g., Sara named other art blogs, and the blogs who led to mine were mostly disability or chronic illness blogs.

While I am not intentionally going out of my way to choose blogs different from mine, I decided to resist the internal pressure I felt to pick, for example, other assistance dog blogs or “non-controversial” blogs. I want to honor the blogs that I think are truly unique and well written, regardless of topic. That’s what I mean by “One Lovely Blog.” Not necessarily “lovely,” as in “beautiful” or “sweet” (though a couple of those are represented), but as in “Damn, I LOVE this blog!” These blogs give something special to the blogosphere that I haven’t found anywhere else. As you can see, my tastes are eclectic!

Accessibility of these blogs varies. Some are what I would consider accessible (such as FWD), and some have obvious access flaws, such as not including a detailed description of graphics, and some I’m really not sure how accessible they are. I was going to try to choose only blogs that I’d consider “more accessible,” but I ran into three problems: 1. The meaning of “accessible” varies greatly depending on the reader’s disability. 2. My own grasp of what’s accessible to others is greatly hindered by my relative computer illiteracy, so I’m often not sure how accessible a given blog is to a given person with a disability. I just don’t grok how the software interfaces with the disability. 3. I haven’t come across that many blogs that I love which are also more-than-usually accessible. (A sad commentary.) However, I encourage you to comment if you go to one of these blogs and find it accessible to your particular disabilities, as this would be good info for all of us. Thank you!

Now, here they are, my picks for the One Lovely Blog Award! Please visit them and enrich your blog-reading experience!

1. FWD/Forward (Feminists with Disabilities for a Way Forward)

This is the only blog that I actually subscribe to, which is saying a lot. I always feel overwhelmed by too much email (who doesn’t?), and yet I read this blog — which sometimes contain multiple posts — every day. FWD is the smartest, most diverse, thoughtful, informative, honest, and ethical blog I’ve come across. There are several bloggers at FWD, and they really work their asses off to provide quality material. FWD has made me rethink what language I use and how I’ve set up my blog for accessibility, and taught me much about politics, the internet, and so many other things I can’t even list them. It often gives me a laugh and much-needed affirmation, too. If you have any interest in feminism or disability rights (and other social justice issues), this is the blog for you. And if you are not that interested in feminism or disability rights, then all the more reason to check it out and learn a little something!

2. VirtuaVet (Online Pet Health Consultations, Coaching and Philosophy)

VirtuaVet is Doc Truli, and she is Truli wonderful. She is a small animal vet, but has worked as an ER and livestock vet, and has had more species of pets than I could imagine! The blog is written beautifully, with great explanations — often with accompanying pictures — for the layperson. Yet, Doc Truli never talks down to her readers. There are quirky posts that cover veterinary issues I’ve not seen anywhere else, such as “Snakes Are People, Too!” and “Fat Dachshund” (the latter of which is one of Doc Truli’s occasional rants against the pet food industry, which is awesome). Not only is VirtuaVet fabulously informative, it also deals with ethical issues. One of my favorite posts starts this way: “I believe your decisions regarding your pets’ care are practical, ethical, moral, and spiritual decisions. Therefore, my advice and approach is unique in veterinary medicine. I love animals to an obsessed, crazy degree.  But I do not adore, love, or idolize medicine.” If only more vets (and MDs) felt this way!

3. GenderBitch (musings of a trans chick)

I discovered GenderBitch at questioningtransphobia, where she is a guest blogger. As GB’s name suggests, this is an angry, funny blog that deals with gender. To be more specific, it mostly deals with transgender issues and transgender oppression, with a lot of overlap with other issues, such as ableism, sexism, polyamory, etc. What I love about GB is how completely unapologetic it is. It is also raw, witty, raging, well written, sarcastic, intelligent, hilarious, geeky, and courageous. Two of my all-time favorite posts — ever — were written by Genderbitch, so I’m also including the links to these two posts: “But I Was Just Curious!” The Fail of Invasive Questions and Intent! It’s Fucking Magic! If you have an interest in queer and/or trans stuff, this is a great site to learn more, get worked up, feel shocked and saddened, or practically pee your pants laughing. If you are not familiar with trans issues, you can learn a lot from Genderbitch, including some terminology (e.g., the prefix “cis,” which essentially means “not trans”) which has not yet made it into “mainstream” vocabularies. But if I, with my cognitive impairment, can figure out, for example, what “cissexism” means, you can, too. Soooo worth it.

4. The Other End of the Leash

Author, behaviorist, trainer, and farmer Patricia McConnell writes a visually beautiful; emotionally open, honest, and lovely; and intellectually engaging blog about life on her farm, and particularly, her dogs. She describes her blog as “an ongoing inquiry about the behavior of people and dogs. I would like this to be a forum for people who are both intellectually and emotionally fascinated by the behavior of the animals at both ends of the leash. My hope is that it will become a place for an informed and thoughtful consideration of the amazing relationship between people and dogs.” She reaches her goal, and so much more. The pictures of the flora and fauna on her farm are delightful, and she always has something personal, yet universal (to dog owner/handlers), to discuss. I don’t read it that often, but every time I do, I think, “Wow, this is totally relevant to what Barnum and I are going through! I must come back here more often!”

5. The Canary Report: Sounding the Alarm about Multiple Chemical Sensitivity

Susie Collins’s The Canary Report is a very active blog of multiple contributors, forums, news articles, creative calls to action, and personal stories, all relating to the environment, health, or MCS. Susie always has a welcoming “Aloha!” for all commenters, and her humor, energy, and nonstop ideas keep the blog vibrant and fluid. Activism, advocacy, and education play a central role here, but there is also fellowship and personal connection. I recommend it to other canaries (people with MCS), as well as to people outside our world who want to learn how they can help protect themselves, their families, animals, and the planet from the harms of pollution, be it small-scale (chemicals in personal care products) or large-scale (the BP oil leak crisis in the Gulf).

6. Susie Bright’s Journal

I’ve had a soft spot for Susie since — as a co-founder of, and columnist for, On Our Backs, a groundbreaking women’s sex magazine — she helped me discover my sexuality in the late 1980s. A decade later, I was thrilled to have my fiction published in OOB (under different management) and then by Susie, herself, in two anthologies. But none of this is why I’m listing her blog here! Quite simply, Susie’s blog is terrific reading! The writing is crisp, clear, and well-researched. She is funny and thought-provoking. You can learn anything about sex and how it intersects with politics, culture, art, history, and more, fascinatingly and articulately spelled out by Susie Bright. She is most to blame for me spending way too many hours lost in obscure lesbian film history or her own tales of wild adventures with famous folks, simply because I clicked on one of her tweets.

7. Lymenaide (living in harmony with Lyme)

Ashley van Tol’s blog about living with Lyme and other tick-borne diseases is the most comprehensive personal Lyme site I’ve found. She has it all — musings on life with Lyme, recipes for those on restricted diets, a store to raise funds for Lyme awareness, calls to action, legislative news, and more. Where Ashley really shines and has made a name for herself in the Lyme community is her activism to raise awareness about Lyme prevention and treatment, and the need to treat Lymies with respect and understanding. She was the force behind four professional TV public service announcements (featuring well-known actors) for Lyme Awareness Month. Ashley manages to write a blog that is celebratory and joyful without distorting the realities of living with Lyme. It’s a site anyone can appreciate, whether they have Lyme or not.

8. Brilliant Mind Broken Body (living with Ehlers-Danlos Syndrome)

Last, but certainly not least, a blog from a fellow assistance-dog partner! Kali writes clear, fluid prose, designed to be understood by both those with disabilities and those who want to know a bit more about what it’s like to live with disability, and specifically, her disability of Ehlers-Danlos Syndrome. (On a personal note, I was surprised and pleased to find BMBB because I had a friend with EDS, and nobody had ever heard of it.) Kali’s posts range from “a typical day in the life of a service dog partner” (my favorite post of hers to date); to social justice issues — such as how -isms like fat oppression, ableism, and sexism interconnect; to silly stories about her quirky SD, Hudson. BMBB is also hosting the next Disability Blog Carnival — keep an eye out!

Please visit these worthy blogs, and give them some love.

As always, your comments are more than welcome.

Peace,

Sharon, Barnum (taking a break from being a blog topic this week), and the Muse of Gadget (missed more sharply in these summer months)

BADD: Q&A on Being an Assistance Dog Partner

Blogging Against Disablism Day“>The graphic for BADD, a multicolored square comprised of twenty other squares of stick figures, mostly standing, some wheelchair symbols or with canes

Today, May 1, is international Blogging Against Disableism Day. So, this blog will be a bit of a departure from the usual. Actually, since I’ve barely been blogging since Barnum arrived, any blog is a departure these days! But I’m very motivated to get this one out because I’ve been looking forward to participating in BADD.

(By the way, Barnum is doing really well! I love him to bits. I keep wanting to blog about this or that exciting or adorable or heartbreaking thing, so I have many partial posts. They won’t be in chronological order, but I’ll get them up eventually!)

In case you are wondering, “disableism” is the term used in most countries outside the US for what we, in the US, call “ableism.” [The preceding link has a nice, succinct definition of ableism, but you can find many others that go into more depth.] If you don’t know what either of these words mean, here is your chance to learn!

When I was writing up my FAQ, there were a lot of comments and questions I wasn’t sure if I should include or not, but they are perfect for BADD, so here they are. (Additional comments and questions, not as closely related to ableism can be found on the FAQCC page.) Some of the questions below are direct quotes, but most are either paraphrases or compilations of the same type of question or comment I’ve heard many times. Because Internet communication and face-to-face communication tend to be different, some are comments I read online (community forums, Facebook, here at After Gadget), others are questions I’m asked “in real life,” and many are a combination.

Warning: It’s pretty hard to address some of these issues without sounding a bit snarky. (Or way snarky.) But I’ve noticed that most blogs err on the side of snark, so hopefully you’re used to it. Nevertheless, this post is aimed at informing those who need informing, amusing and affirming my comrades, and yes, allowing me to blow off some steam on a few pet (pun! — see below) peeves. If  you’ve said some version of the things I don’t like, it doesn’t mean I don’t love and appreciate you. After all, Gadget wouldn’t have cared, and he was an excellent judge of character. It just means, we’re all learning.

Frequent Questions and Comments on Being an Assistance Dog (AD) Partner

General Questions and Comments

Q: Who trained your service dog (SD)?

A: I did. Yes, me, a disabled person! I train my own dogs!

Q: That was sarcastic and overly emphatic. How come?

A: I get asked this question a lot, and it gets tiresome, especially because usually the question is put to me this way: “Who gave you your service dog?” or “Where did you get her/him from?” or “Who trained him for you?” or “Isn’t it wonderful that they [assistance-dog programs] do this?”

These questions assume that because I’m disabled, I must be the recipient of charity. (And by the way, most AD programs charge for their dogs — many thousand dollars). I particularly find it irksome when someone asks who trained my dog after I have already said that I train my own service dogs. (Yes, it happens often.)

To sum up: The frequency of this question, the patronizing tone which sometimes accompanies it, the astonishment with which my answer is usually greeted, and the fact that people ask it after I have already told them I am my own dog trainer is insulting. It suggests that many nondisabled people have trouble wrapping their minds around the idea that a person with a disability (PWD), or maybe especially a person with multiple disabilities, is capable of training her own assistance dog.

The corollary is that sometimes, when I am interacting with someone online who therefore cannot see my disabilities, I will say I am a PWD raising a puppy to be my service dog, and they gush in response how noble and big-hearted I am to do this work. In this case, the nondisabled person has had to ignore the fact that I said I was disabled and that this will be my service dog in order to fit the idea of me being a nondisabled “puppy raiser” into their world view. When I correct their assumption, suddenly my dog-training efforts are no longer so laudatory.

Both these types of comments and questions are forms of dis/ableism. Again, I encourage you to please learn the definition of ableism. Reading blogs about disability rights issues can also help; there are some great ones on my blogroll.

Q: Isn’t there a non-offensive version of that question?

A: Yes, there is. Sometimes people ask in a neutral way, “May I ask who trained your dog?” or “Did you train him or get him from a program?” or something along those lines. If their response, on hearing that I trained him is not incredulous gushing, but treated as just another interesting piece of information, that is very nice. Sometimes people say something like, “You must be a good trainer, he’s great!” Of course, flattery will get you everywhere.

Actually, some people ask this because they have a disability (often a hidden one) or because someone in their lives has a disability, and they are wondering if an assistance dog might help them. I am very eager to give them information, including a leaflet with the contact information for an assistance-dog advocacy organization of which I’m a member. I often give them my own name and email address and encourage them to contact me.

Likewise, if the person is another dog-training fanatic, it can be fun to “talk shop.” I do like to meet up with other assistance dog partners when out and about because I’m pretty starved for “real-life” assistance-dog friends, but I understand that not everyone wants to get into an AD conversation every time they leave their house. (See below.)

Q: What kind of dog is that? Can I pet him? [Pet, pet, whistle, clap, shout, wave, offer treat.] Can I give him this biscuit? What’s his name? Where’d you get him? What does he do for you? Can I monopolize all your time and energy and breathing space to talk to you about your dog?

A:

Long answer: Do you see that I am using oxygen and a mask covering my nose and mouth? And that I am falling out of my chair with exhaustion? Did you know that once I get home, my PCA will have to help me bathe, change my clothes, wash my AD, and my powerchair because of all the chemical fumes that sink into hair and skin and fabric? Did you know that if you pet my AD, not only are you distracting him from his job, but you are also getting even more chemicals on him that we will have to shampoo off?

Short answer: I’m trying to buy something. Here’s a leaflet.

Non-Snarky addendum: I know that many AD partners like to interact with the public about their ADs. Sometimes I do, too. It depends on the situation (how sick I am, what the environment is, the tone of the interaction, etc.). It’s true that for many PWDs, partnering with an AD helps break down isolation, and that has been true for me, too.

I also think it makes a difference what questions you get asked and how often. For example, many AD partners find it particularly intrusive and offensive to be asked what their AD does, since this is often akin to asking details about their disability or daily living needs. If I’m already in a conversation with someone about my AD, and I think their question has a valid basis, and isn’t just nosiness, I might be okay with it. I also usually give examples of the most obvious and least personal tasks. However, bear in mind that asking, “What does your dog do for you?” could be like asking a stranger, “Do you have trouble getting up when you fall? Do you take medication that you need help to remember? Do you have a panic disorder that your dog assists you with?”

Another issue is since my SDs have been Bouviers des Flandres (usually with short haircuts I do myself), I am constantly asked, “What kind of dog is that?” When I answer, most people say they’ve never heard of them. I actually made a brochure called, “What Kind of Dog Is That?” after I partnered with my first Bouv, Jersey, just so I didn’t have to get stuck in long explanations about what a Bouvier is.

The moral of the story is that everyone is unique, and some people love to discuss their ADs, some people don’t, and everybody has good days and bad days, hurried days and mellow days. Also, bear in mind that almost all of us get asked questions or hear comments whenever we’re in public. So, if you want to approach a stranger about their working dog, try to limit your questions, and be prepared to gracefully take “no” for an answer. I recommend approaching with something like, “Do you have a moment to answer a question about your assistance dog?” That way, you acknowledge that the PWD has a life that is not devoted to being a spokesperson, and you’re giving them an “out” if they don’t want to talk. If you have a specific reason behind your question, I would open with that, which indicates that you don’t intend to take up all their time.

Questions and Comments Arising from Gadget’s Death and/or this Blog

Q: I am so sorry about the loss of your pet. I know just what you’re going through because I lost my pet dog, too, and I loved him so much.

A: Thank you for your sympathies. I’m sorry about the loss of your dog, as well. I have lost much-beloved pets, too, and it is very painful. The grief can last a long time and is sometimes devastating. In fact, it is often a worse loss than that of a human loved one because our relationship with our animals is usually entirely positive, without any of the anger, guilt, resentment, or other complications of human relationships.

However, Gadget was not a pet. He was my service dog.

I strongly disliked having Gadget referred to as my pet when he was alive, and because my loss has been so public, I find that since his death, I’ve heard him referred to as my pet (or my “companion” or “friend,” which are often other terms people use for pets) much more than I did when he was alive. It can be a little hard to take, hearing it so often.

While the “heart loss” of an assistance dog may share similarities with the loss of a super-bonded pet relationship, the working-assistant partnership and functionality loss are very different. The grief of pet loss is very real, but  it’s a different kind of loss in several respects. I can’t speak for all assistance-dog partners, but those I have talked to about this issue feel as I do: We hate having our partners called pets, and we hate it when non-AD partners say they know just how we feel.

Q: Why? How is the loss of an assistance dog different?

A: I haven’t come up with a short, simple answer to that yet, but I’m hoping that the accumulated posts here, over time, will be an answer to that question. Gadget’s death is the worst loss I’ve lived through, and that includes the death of one my best friends a year ago and multiple other forms of major loss.

To put this into perspective: The first three years I was disabled by chronic illness, I almost never left the house, and I often went many weeks at a time without seeing another human being. I lost my job and career, friends, much of my financial security, freedom, independence, social life, and on and on. And I also just felt physically very lousy all the time. I had two cats at that time, and they were my one source of physical contact, daily interaction, and love. When each of them died, it was very, very hard. I used to say, and I still believe, they kept me sane those first few years.

Yet, Gadget’s death feels 50 times worse. Sometimes people react to my disabilities as tragedies. I don’t feel they are tragedies; I feel Gadget’s death was a tragedy. I have never dreaded anything so much as I dreaded him dying. I honestly don’t know if I’ll ever completely get over it.

Q: I was trying to be supportive. What should I say instead?

A: I know you were, and I appreciate your kind intention. While I know you are trying to empathize by saying you have gone through the same thing, many of us feel more alone when we hear such comments, because we feel the person trying to comfort us not only doesn’t understand what we’re going through, but by saying that they do, we are cut off from saying how we really feel. I know I usually say, “Thank you,” to conform to social niceties and to spare a well-intentioned person’s feelings; then I try to avoid the topic with them after that. That feels lonely, too.

I hope you will make use of this information the next time you come into contact with someone who has lost an assistance dog. As to what words to use instead, more appropriate terms would be “partner,” “assistance dog,” or “service dog,” “guide dog,” or “hearing dog.” If you don’t want to use these terms, you can just say the animal’s name: “I’m so sorry you lost [dog’s name]. You must miss him/her terribly. Let me know what you need. I’m here for you.” That’s usually what I want to hear, and I find it hard to imagine another grieving AD partner would be put off by any of the above. In fact, I think those are good things to say regarding any kind of bereavement.

I also am fine with people — in comments here at After Gadget or in “real life” — telling me about their own feelings of sadness and loss when their dogs died, whether or not they were pets or ADs. It’s always okay to talk about your own feelings, your own experiences, and I can often tell from people’s tone how heartfelt their sympathies are. I have been moved by many of the comments here from those who have lost companion animals saying that my blog has touched them and reminded them of their own dogs. It is only when people start making comparisons, insisting that they know how I feel, or using “the p-word,” that I feel alienated.

(Other assistance dog partners: If you agree, disagree, have other ideas, etc., please comment!)

Q: Is it okay to post this link on my blog/website/Facebook/email to friends? I would have to list it under “pet loss resources” and you just said not to refer to him as a “pet”!

A: That’s okay. Really and truly. Please do spread the word. The more people who learn about and love Gadget, the better. I feel that Gadget’s death left a hole in the world, and I want more people to know how wonderful he was, and how much he is missed.

While AD partners often try to seek each other out for comfort and support when dealing with a loss, sometimes we don’t know others, or we are not that connected to the AD community, or we face communication or other access barriers. In fact, I turned to a variety of “pet loss” groups and hotlines. Some worked out better for me than others, but these things are very individual. A listserv of people who lost their dogs to cancer has been very important to me, and I’m the only AD partner in the group; however, I relate very strongly to most of what happens on the list and care deeply about the other people and dogs. Having a relationship with these people before our dogs died makes a big difference.

In fact, my impression is that most readers of After Gadget were not AD partners, but many have lost pet dogs; there is a lot about grief and loss that is universal, no matter the species or relationship. I am hoping that After Gadget will, in time, be just one of many easily accessed resources for grieving assistance dog partners — blogs, chats, lists, hotlines, etc. Meanwhile, we have to find each other somewhere, and pet loss resources are often where we try. I would appreciate it, though, if you indicated that Gadget was a service dog along with your link.

Comments and Questions Arising from Seeking and Raising My New Puppy, Barnum

Q: Do you have a replacement lined up?

A: In the AD community, we do not use the term “replacement.” Gadget could never be replaced. He was one-of-a-kind. It would be like saying, after your spouse died, “Are you going to marry a replacement?” We prefer the term “successor.”

Most also prefer the term “partner,” not “owner,” because an assistance-dog partnership is a team effort. Both members of the team take care of and support each other and work together toward their goals.

Likewise, a previous AD is “retired” or the “predecessor,” and contrary to popular belief, not all retired ADs are rehomed (or euthanized!). Some ADs stay with their former partner as back-up SDs, pets, therapy dogs, etc.

Q:

1. Who will raise your puppy for you?

A: 1. I will be raising the puppy.

2. Would you like me, a complete stranger, to do it?

2. No, I wouldn’t. Assuming I need someone else — someone nondisabled or less disabled than me — to raise my future SD is ableist, especially if you have learned anything about me and know that I have trained two previous SDs and also have helped other people (mostly nondisabled people!) train their dogs. Please read more on learning about ableism.

3. Would you like me to give you a random puppy, probably of a breed you are allergic to, from my neighbor who has done no health testing on the parents and has no experience in selecting dogs with the right temperament to do the type of assistance work you’re seeking?

3. No, I really, really wouldn’t. I spent years, literally, researching which breeder I wanted to get my puppy from this time around. There are not many Bouvier breeders in the US, yet I still had to do my homework. The breeder I chose knows the complete lineage of Barnum’s parents (which includes their personalities, health histories, and temperaments) and provides information on every health test she has run on them and their forebears. She is also one of a minuscule number of Bouvier breeders that have bred and selected service dogs.

Q: If you start with a puppy, won’t it take an awfully long time before the dog can assist you?

A: Yes, it will, and that will be the hardest part: expending so much energy while getting no help in return for a long while at the beginning. My original plan had been to do something similar to what I did when training Gadget: I adopted Gadget when Jersey was still working, and she helped me train him, and then she retired as my pet when Gadget was ready to take over working. For Gadget’s successor, I’d decided to get a puppy when Gadget was about seven or eight year’s old; that way I would have had Gadget’s assistance with training the puppy, as well as not having a gap with no canine assistant. However, two major things went wrong. One was that I became severely ill with Lyme and two other tick-borne diseases and had to focus on survival; therefore, I was in no shape to raise and train a puppy. Second, right around the time my health was improving, Gadget got cancer, so my focus had to be on his needs, above all else.

However, the waiting and trade-off was hard when I was training adult dogs, too. It seems to be par-for-the-course whenever one adjusts to a new assistance dog or when one is working toward finishing training. (I have heard from those with program dogs that even in that case, when starting a new partnership, it takes both team members time to acclimate to new routines, environments, and styles.)

However, this time, for the first time, I have several people, including my partner, who are helping me raise Barnum. Without them, I definitely could not handle a baby. In the past, I did all of the care and training myself (except for Gadget’s wonderful dog walkers, Deb and Cameron, whom he loved with all his heart, as do I).

And yes, I know I said above that the assumption that I couldn’t raise a puppy on my own was ableist, and now I’ve gone and verified that I couldn’t raise a puppy on my own, so let me elucidate: It is the assumption that is the problem. Types and severities of disability range greatly. I’m much more severely disabled now than I was a few years ago. Also, there is often an assumption (that word keeps cropping up!) that disabled people lead solitary lives, without friends, lovers, spouses, etc. Barnum is being actively raised by my partner, me, and my four PCAs — under my instruction — with additional support that I have rallied from my small, rural community.

I know several people with disabilities who raised their ADs from puppyhood who considered it a delight and wouldn’t have had it any other way. I know others who absolutely feel their lifestyle could not accommodate a puppy and have adopted adolescent or adult dogs or who have obtained program dogs. There are also people who did raise a puppy into an AD but who have decided that next time around they will take a different route. You might notice that the same can be said for nondisabled people: some prefer pups, some older dogs, etc. In fact, if you learn nothing else from this post, I hope this one fact will come shining through: all people with disabilities are unique, just like all nondisabled people are unique! In this way, we are all exactly the same! (Ooh, a paradox.)

Q: Oh my goodness! How will you manage without a service dog until the puppy is full-grown and trained? Can’t I help you get a trained service dog right now? I barely know you, but I am so worried about you!

A: I very much appreciate that you understand that service dogs are not pets, and that my independence, safety, freedom, and quality of life are inextricably connected to my partnerships with my service dog. When people “get” that this loss is not the loss of a pet, that can feel very supportive.

However, treating my disability as a catastrophe and my life as a tragedy does not feel supportive. It suggests that you think I have had service dogs from the moment I became disabled, for example, which isn’t true for me or any assistance dog partner I know. It also indicates an assumption that I lack the resources to survive without a service dog, which is also not true of me or any other AD partner I know. (Hopefully you’ve already figured out that this type of response is yet another form of ableism.)

Those who choose to partner with ADs may experience better, richer, more independent, or safer lives with our canine assistants, but that doesn’t mean we will keel over and die without them. Often, to explain the role of our dogs, AD partners liken an AD to a piece of assistive equipment, such as a wheelchair, a cane, or an environmental control unit: we can survive without them, but life is much better with them. In fact, when an AD dies or retires, many of us turn to the assistive technologies we used to use before we were working with an AD. (I’ve discussed this in some of my previous posts, especially this one about the doorbell.) We might experience these technologies as inferior to a partnership with a versatile, thinking teammate, but they are extremely valuable.

Two other ways of coping with functional issues after the loss of an AD are increased human assistance, and — for lack of a better term — “making do.” I do need human assistants to get along, but my life is best with both a canine assistant and human assistants. For others I know, having an assistance dog allows them to live without PCAs or other human assistants (such as sighted guides). If they lose their AD, they may turn to human assistants until they have a reliable AD again. In my case, having more personal assistance for myself than I had when training my previous dogs will make me better able to raise Barnum. I’ve also enlisted the help of members of my household to pitch in with things like taking Barnum out to pee or playing with him, when I’m too tired or in too much pain. Betsy took him to puppy kindergarten because the class was not MCS-accessible. Having more people involved helps take the pressure off the pup and me, allowing us all to enjoy his puppyhood and training more fully.

Q: But why buy from a breeder? Why not adopt a rescue? Don’t you feel guilty that you’re contributing to dog overpopulation? Don’t assistance-dog programs contribute to the overpopulation and death of dogs?

A: This is a complicated situation, and I have wrestled with guilt over the decision to buy from a breeder. My previous dogs have all been older — two rescues and one “rehome.” However, my reasons for wanting a puppy this time around are solid, relating to my own health needs, my service dog goals, and what I think will be best for the dog. It’s just not the right time for me to have a rescue. I considered it, and I decided it wouldn’t be fair to the dog nor to me and my household. I’m hoping that eventually I’ll be doing well enough to foster and help train rescue dogs for others.

Another major issue in terms of adopting rescues is that I am allergic to most dogs, so I can’t adopt or foster a mixed breed (which eliminates 75 percent of shelter dogs) or any breed that is not hypoallergenic. This doesn’t mean it’s impossible for me to adopt a rescue — I’ve done it before, through Bouvier rescue — but it makes it more complicated.

If I didn’t have allergies, I would likely have adopted a mixed breed from the shelter for my first service dog, as they tend to be genetically hardier and healthier (because there is less inbreeding than with purebred dogs), and are usually very smart, to boot. But it’s very rare to find a hypoallergenic mixed breed. Plus, now I’m an incurable Bouvier fancier.

As to the issue of breeding programs at assistance-dog schools, this is complex. For one thing, many programs do adopt and train dogs from shelters, rescue, or donated from breeders. For another, the life of an assistance dog is not for everyone. If a program has a high success rate of graduating dogs with the physical, mental, and emotional traits that make assistance work rewarding, safe, and successful for them, and if they are humane and responsible in their breeding, training, and placement, that is probably the best way to go for them.

In my opinion, the crime of dog overpopulation (and thus, death) is caused primarily by puppy mills, which are too horrible for me to discuss here, and secondarily by people who breed their pet dogs without awareness of the larger consequences.

Q: Why don’t you get a service dog who is already trained? Wouldn’t it be easier?

A: Yes and no. It’s complicated. I’ve posted the long version of the story in my “About Sharon’s Dogs” page. For this BADD post, however, I do want to briefly make three points that do relate to ableism (and which I discuss more fully and less pedantically on the other page):

1. I tried to get a service dog through a program, and I couldn’t. This was for two reasons. The first is that no program could or would train a dog to fit my disability needs, because my disabilities were not “mainstream” enough. Fortunately, the AD world has changed a lot since 1998, and many more types of disabilities are now seen as appropriate for service dog work. The second is that no program would accommodate my disability needs, which is extremely problematic for organizations that are designed to meet the needs of PWDs! This is changing, too, though not as much as I’d like.

2. I discovered, in the process of searching for and applying for programs, that there was an air of paternalism among many programs that really turned me off. A big component of the disability rights movement is self-empowerment — that we (PWDs) know our lives, bodies, and needs best. Sometimes this means that the people who are in the “helping professions” (doctors, social workers, those who work for public or private charities or benefits programs, etc.), treat us with less respect, understanding, or autonomy than we think is appropriate or healthy. While many assistance-dog programs work terrifically well for many people, a lot depends on the organization, the PWD, and the fit between them. I did not find a good fit in this regard; however, as I mentioned above, a lot has changed. Many new AD programs have sprung up that have a more “client-driven” focus, including programs run by PWDs or that teach PWDs to train their own ADs. I also think some of the “old guard” has changed somewhat to keep up with the times.

3. Once I discovered that I was good at and enjoyed assistance-dog training, I got hooked. There are challenges, but for me, the benefits of partner-training outweigh the costs. If someone tried to train my dog for me, I would feel robbed of an essential part of our partnership and of my life experience, as well as of the flexibility I enjoy to train or retrain to fit exactly according to my (often changing) disability needs and my lifestyle.

Q: You mentioned a struggle you’re having with raising your puppy. The problem is that you’re doing [fill in the blank], while you really should [fill in the blank thing that is either inappropriate or impossible for you to do].

A.

1. [Silence.]

2. Everyone loves to give advice about raising puppies, training dogs, raising children, etc., to people who are newly in the thick of it, disability or not. I have been guilty of this, myself. Unfortunately, usually unsolicited advice is obnoxious (again, disability or no).

However, there are some broader issues to keep in mind. One is that PWDs have historically received — and continue to, as much or more than ever — unsolicited advice from nondisabled people about our disabilities. The underlying assumption is that since we’re disabled, and they’re not, we must be doing something wrong, so nondisabled folks, who must be doing something right, can fill us in.

This urge is so widespread and obnoxious that when I was cartooning about life with disability, my most popular cartoon, bar none, was one that was a “fill-in-the-blank” card to people offering “helpful suggestions” about how we could cure ourselves. PWDs from all over the world and with every type of disability related to that cartoon. Before you give any advice to a PWD on any topic, think long and hard about whether this is something we might already have more information and perspective on than you do because we live with the disability, ourselves. Also, think about whether they have indicated in any way that they want your advice.

I’ve received many suggestions and pieces of advice since I got Barnum, and a few of them were useful (such as book recommendations), and many were not. The ones that stuck in my craw tended to be from people without disabilities or with different disabilities than me who were judgmental or ignorant around my disabilities.

For example, I was very stressed about how to get Barnum from his crate and out the door in the first few weeks of toilet training without either (a) allowing him time to have an accident or (b) running him over in my powerchair. I had tremendous anxiety about hurting a puppy with my powerchair. I literally had nightmares about it before he arrived. I was so afraid I would accidentally murder him in a horrific way by running him over in my chair that it was a factor in my decision as to whether to get a puppy or not.

My friends reassured me that I would not accidentally kill the puppy. Then Barnum arrived, and it turned out to be quite tricky. The easiest way, for others in the household, was to pick him up and jog to the door and deposit him outside. This did not work easily for me.

For one thing, for the first two weeks, he reeked so bad of the fragranced shampoo the breeder had washed him with (despite our washing him, ourselves, several times), that I couldn’t touch him or pick him up without having a reaction. If I held him, any clothes that touched him had to go into the wash. This added an additional layer of work and exhaustion — not to mention misery at not being able to touch and bond with my puppy without becoming ill — to an already difficult situation. Since I had to take him out every hour, I couldn’t pick him up and then change my clothes every hour!

There were also the issues of fatigue, balance, dizziness, weakness, etc., that affected being able to pick him up and whisk him to the door in my lap. Hefting ten pounds (and growing every day!) of wriggling puppy was not nothing for me. There’s also the fact that opening and shutting of doors can be tricky from a chair, and with a squirming puppy whose bladder can only last 30 seconds or less, the situation isn’t any easier.

It seemed to me that the best solution was to get a leash on him and then have him run behind me out the door. That way, I would know where he was (because of where the leash was), and I wouldn’t have to deal with the lap-related issues. Despite my extreme watchfulness, however, I did twice run over his paw, which was a terrifying experience for both of us, but which caused neither of us any lasting harm.

However, when I sought advice on handling the leash situation with a puppy who was still not used to wearing a collar, several people told me that I should just carry him! What the heck was wrong with me that I was trying to get a puppy to heel on command at nine weeks? (Of course, I didn’t care about heeling; I cared about not squishing him.) Someone even told me that I should not move my chair, ever, at any time, without first always making sure that he was nowhere near me. Well then, how should I get him to the door? Telekinesis?

Several people were quite blaming that I had run over his paw at all. Honestly, I don’t know any wheelchair user who has never run over their dog’s paw! I have run over several people’s feet, including my own! Certainly there must exist many wheelchair users who are much more graceful than I, who have better coordination, better memory and spatial abilities, more accessible homes, and no balance issues. Not all of us are born athletes! In fact, Betsy accidentally stepped on Barnum’s paw on a walk and felt just as horrible as I had when I’d run over his paw. Then I found in one of my puppy books, under life stages, “Learns to avoid being stepped on”! That made us both feel better.

So, this is my final point: All the people who gave me a hard time and/or told me how I should have handled getting Barnum from the crate to the door knew that I have a disability and that I’m a wheelchair user. Some did not know about the MCS, and at any rate, in my experience, only people in the severe MCS community actually understand severe MCS, no matter how much others may think they do. Still, is it really such a stretch to imagine that someone who uses a powerchair to get around in her house might have disabilities that would make it challenging or impossible to lean over, pickup a wriggling, increasingly heavy puppy, carry it through at least two doorways and to the outdoors, in winter, all in under thirty seconds? Might it have occurred to the people to whom I said, “I need to have him on a leash so I know where he is so I don’t run over him,” that I had good reasons for choosing that method? Did they think that having a disability made me unaware that I also am the proud owner of a lap?

Of course not. I’m sure they didn’t think of these issues at all. That’s the point: assumptions, again. Assumptions about what a PWD can or can’t do, and assumptions that the way a PWD chooses are not based in rational awareness of her own body and/or abilities and/or limitations. I have to say that, unlike most assistance-dog partners I know, I have very rarely been denied access to public facilities. Having an assistance dog has not kept me from passing through most doors. Yet, I still find that I frequently must ask people, when it comes to me and my service dogs, to check your assumptions at the door.

P.S. It’s a year later, and I read this terrific post, Service Dog Etiquette for Dog Lovers, at The Manor of Mixed Blessings, and I thought it was terrific. Please read it; if you are not an assistance-dog partner, I guarantee you will learn something. She also wrote this follow-up piece for people who were bothered by her shoe analogy, which I actually loved and commented upon.

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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