A Typical Atypical Day in the Life (Part II)…

. . . of a woman with Lyme, CFIDS, and MCS partner-training her bouvier des Flandres service dog.

With a Side of Waspish Wednesday

This is the second post about the good day I had a few weeks ago.

I’ll repeat the setup: “It was atypical because I went out, which I don’t usually do. But the things that occurred, and the way I went out, were mostly typical. A lot of Barnum’s behavior was atypical for the away-from-home Barnum, which is great news!”

The day’s events also fit neatly into Lyme disease awareness and MCS awareness efforts, which I was blogging about all month. Must. Try. To. Squeeeeeeze. In. MCS and Lyme. AWAREness. BEFORE. MAY. ENDS! AUGH!!

Not that I’m feeling any pressure about the dozen MCS and/or Lyme-related posts in my drafts folder or anything. Fortunately, I will still have Lyme and MCS after May is over, which will allow me to continue to blog about these disabilities and raise awareness on them. Ahem. That’s a bit of chronic illness humor.

One frustratingly typical aspect about this “two-part” blog series is that I wrote that first post at the end of May, with the intention of writing Part 2 within a day or two, and it has taken me until now, the beginning of July, to write the second post. That is typical of the unpredictable nature of my functioning. There is always too much for me to do; I never know from day-to-day what my mental or physical functioning will be; and I am constantly trying to reprioritize what I’m blogging about, or training instead of blogging, or resting instead of anything else, or trying to do “professional” writing, etc.

However, perhaps the time lag is a blessing in disguise, because I have had several more days since then that have shared some features of that day — aspects of the day that were atypical then, and which, while not actually typical yet, are now becoming less atypical — which is all to the good! For example, at the time, I had almost never taken Barnum out for public access training, whereas since then we have had a few outings (one of which I wrote about recently). Each time, Barnum has improved a little bit, and what was amazingly, fabulously atypical about that day has become more and more expected (though still not something I take for granted).

Anynoodle, let’s ride the Way Back Machine to the end of May, shall we?

My PCA loaded my chair into the van, and I loaded Barnum (which is very easy — you open the side door and he leaps in as if he’s on springs), and off we went to the local coop. I didn’t plan to go inside, and since it’s still rural and clean air, I didn’t bring my mask or personal air filter (which I would have done if I was going inside). It is quite atypical for me to go in the van without mask or personal air filter, but being forgetful is typical of me, due to my brain injury from Lyme, CFIDS, and the carbon monoxide poisoning that was an instigating factor for my MCS. (Note: Another casualty of getting caught in the rain recently was my personal air purifier. Getting water inside it killed it.) My exposures and reactions were minimal, and I bounced back well, with is my new typical. A few years ago, that would definitely have been atypical.

However, I did have my air filter running  in the van, and I had my oxygen for the ride, if I needed it, which I didn’t — also atypical. That was a bonus.

While it used to be that if I went somewhere in the van, we’d bring along my pchair, and I’d get out and go into the store or wherever, this has not been the case for the last few years. Partly, this changed when I got so sick due to Lyme disease that I never went anywhere unless it was absolutely necessary for me to go to the doctor or hospital. Then, all the powerchair issues arose, and on the rare occasions I went somewhere other than a medical appointment, I neither had the physical energy, nor the equipment, to get out and do anything. So, I’d just sit in the car. For example, once Betsy took me to the dump, and I had a terrific time watching her scrounge through potentially useful items others had thrown out. Here in rural America, going to the dump IS considered a social event.

This time was quite atypical in that I did get out of my seat, and we did not take out my chair. My plan was to work on having Barnum jump in and out of the van, sitting on cue. As I mentioned recently, I always train my service dogs to wait in the vehicle before they’re released, and to sit immediately upon exiting (a default sit). This was quite easy to teach Jersey and Gadget, but it has not been so easy with Mr. Barnum.

My goal was to have Barnum pay any attention to me at all, respond to clicks and take treats, and work on being under control during and after exiting the van. While we worked outside, my PCA would go into the store and pick up a few items for me.

So, I just sat on the floor of the van in the open doorway — atypical for me to be able to do that — and had Barnum jump in and out. He likes the jumping in and out. The problem is getting him to focus on me or following cues when he’s out. However, what was atypical of that day (but not anymore!) was that Barnum was very interested in — and willing to take — food rewards. We got several in-and-outs accomplished.

Then, I let him just stand there, on leash, and observe The World (such as it is on Rattlesnake Gutter Road, not exactly a teeming hub), and tried, periodically, to get him to look my way and take clicks/treats for noticing me and not pulling me. He performed these behaviors much better than in the past, which was atypical at the time.

Then, a woman saw us from across the lot. Everything that ensued is severely, obnoxiously (and sometimes humorously) typical.

“Is that a giant poodle?” she asked, walking toward us.

Internally, I got a little chuckle out of that one. After over a decade of partnering with bouvier des Flandres service dogs, I thought I had heard them all, but no, “giant poodle” was a new one. (What would a giant poodle be? A cross between a giant schnauzer and a standard poodle? Or just a really humongous poodle, like one that had been bitten by a radioactive spider and obtained super powers and went stomping through the streets of Tokyo, with its big poofy tail ferociously wagging and busting out office building windows, while it bounced and chased its tennis ball, crushing vehicles in its path?)

“It’s a bouvier des Flandres,” I said, and she gave me the puzzled look people always give me.

“Can I pet him?” She asked.

Here’s where I went wrong. I said yes, because Barnum and I get out infrequently enough that I was still thinking it was good for him to meet and have positive interactions with people.

However, he was pulling on leash, so I explained that while he was friendly, I was training him not to pull on leash, and he was pulling to get to her, so could she please stop?

What does she do? She comes forward faster.

“Here,” she says. “Now he doesn’t have to pull to get to me.” So, Barnum gets reinforced for the bad behavior I was trying not to reinforce, as this woman rushes over in response to his pulling and starts patting him.

I would like there to be a truck, called the “Unclear on the Concept” Truck. I’d like a celebrity, such as Margaret Cho or Kathy Griffin, to ride in it. And then, when someone who was severely Unclear on the Concept pulled a move like this, the truck would screech up, and out would pop the celebrity, with balloons and flowers to hand to the person, while the UCOTC crew blew noise-makers and tossed confetti on the person’s  head. And Kathy/Margaret would say, “Congratulations! You are Unclear on the Concept!” and they’d hand over the balloons and put a big purple sash on the person that said, “I Don’t Know How to Listen.” And they’d receive an invitation to repeat kindergarten, where concepts such as listening and following instructions were a really big deal, if I remember correctly.

We’d need a massive fleet of these trucks to follow around every assistance dog team and SDiT team on the planet, which I guess would be a big waste of resources, so it’s probably not worth it. On the other hand, it would provide lots of jobs, thereby helping the economy.

Anynoodle, back to my UCOTC “friend.” So, I’m trying to get a handle on the situation while she peppers me with questions, “What kind of dog is that again? A boovee-er? I’ve never heard of that,” etc., when The Big Wall of Fragrance rolls toward me.

Because everyone in my life is scrupulously fragrance-free, and I don’t go out, I sometimes forget that the rest of the planet reeks. So, this fragrancy woman is patting my dog, whom I don’t want to have to bathe when we get home. So I say, “I need you to stop petting him. I have multiple chemical sensitivity, and if he gets fragrance on his fur, I will have to wash him when I get home.”

And she says. . . .

Anyone wanna guess? Hint: If you have MCS, you already know the answer! . . .

“I’m not wearing anything!”

Oh, of course! I am sure I just imagined the smell of fragrances bombarding me the minute you got within six feet!

And then the Unclear on the Concept Truck rolls up and hands her another bouquet of flowers (in my mind).

So, I start dragging Barnum away from her, and to her credit, the woman actually takes a step or two back, which most people don’t, but she doesn’t LEAVE. Why? Because she’s now a two-time crowned Queen of Unclear on the Concept. Instead, she wants to hang around and show me how much she Really Really GETS What I Am Going Through.

She starts telling me how she doesn’t use fragrance, because she lives in [next-door town to mine] and do I live there? And I tell her no, I live in [my town] where there are a lot of MCSers, and she says yes, there are so many people around here with MCS. . . .

I’m just trying to get her to go away and get her off the hook, so I give her some of my standard lines, about how it could really be anything, and I’m sure she’s not aware of it, or it could be if she was around someone else wearing fragrance and it got on her, blah blah blah.

And yes, yes, she says, it’s everywhere, but no, not her, it couldn’t be her, because she knows this woman in town, well, she’s never actually spoken to her, but she sees her going for walks, and she wears a big hat and glasses and a long-sleeved shirt, have I seen her? No? Anyway, she goes on these walks, and this and that, I really don’t know her? No? Well, anyway . . . blah blah blah about this poor other woman.

I’m trying to get her to go away. I tell her I’m trying to train my dog. And during the course of all this it comes out that yes, she does use scented shampoo, and deodorant, and laundry detergent, etc., but that’s not the same as wearing fragrances, of course, blah blah blah. I’m thinking, “How come I can usually get people to leave me alone a little faster than this?”

Then it hits me: I don’t look disabled today. This hasn’t happened in years. I don’t know when the last time was that I was in any sort of public place without at least being in a wheelchair and/or wearing a mask and/or using oxygen and/or with a service dog by my side. And sometimes nonverbal and signing. Normally, people stare at me as if I’m some sort of freak because of all this, and can’t get away fast enough (though they will still stare — a LOT).

But, the wheelchair was still in the van. I’d forgotten to bring my mask, and although I had oxygen in the car, I hadn’t thought I’d need it, so I didn’t think to reach for it. My voice was working, and of course, she had no way of knowing that the dog I was trying to train before she descended on me is my SDiT, because he’s not yet ready to wear his gear in public. While I don’t enjoy the way people treat me when I “look disabled,” it’s also true that for most people, while there is a certain fascination and draw to talking to me, either to talk about the dog or to do some emotional head patting (“Oh, isn’t it wonderful that you’re OUT! You’re so BRAVE!”), there is also usually an equal or greater amount of fear and desire to get the hell away from me.

But not today, today was Atypical Day in terms of my disabilities suddenly having become invisible, so all Ms. UCOTC knew was that I was trying to train my dog, who was completely ignoring me because he wanted to sniff the interesting-smelling woman who is standing still just close enough to be a major distraction to Barnum and a biohazard to me. So of course, she was doing her civic duty by hanging out and telling me just how deeply she understood what it’s like to have MCS, because of this woman in her town. She went on and on about this woman taking walks, and do I take walks? No, I said.

I kept hoping that if I used very short, small, unencouraging words, that she would go away. But, she didn’t, because she is obviously a black-belt in UCOTC.

I really wanted to say, “No, I don’t take walks because I can’t WALK! I am disabled and trying to train my assistance dog, and you are wasting precious, limited energy, and I don’t give a crap about this other woman who you are voyeuring and telling her business to strangers you don’t know, so leave me the fuck alone and go away!”

But, I didn’t say that because 1. I was trying to concentrate on Barnum, and 2. because of my cognitive impairment and exhaustion, it’s hard enough for me to have conversations with people I know and want to talk to, let alone ones I don’t know and wish would go away, and 3. I couldn’t think of a way to say, “Leave me the hell alone! Go away!” without being incredibly rude.

Somehow, however, I did manage to eventually get across that I was trying to train my dog, and that it took a lot of concentration, and that I really needed to get back to that, and so would she please go away? And she did, walking backwards, yakking at me the whole time.

THAT was, sadly, typical: 1. Everyone wants to talk to me about my dog, and they don’t listen to instructions/requests not to make an already difficult job more difficult, and 2. Nobody ever believes that they could possibly be wearing something that is making me sick and that when I say, “Don’t pet my dog,” I mean, “Don’t pet my dog!”

The irony is that we left the wheelchair in the van to save time and energy (using the lift is a pain in the ass), so that I could devote all my energy to training Barnum. But if I had been sitting in it, probably this woman would have skeedaddled a lot faster.

But, as she was walking away, she was asking me more questions about Barnum, telling me how handsome he is, etc., and she said, “He’s so calm. Are they all so calm like that?” And that really gave me a laugh, because of course, I’d been dealing with Mr. Hyper-Flake for so long, and this trip was part of determining if he could calm down and focus enough that I wouldn’t have to wash him out. So, that was a very nice part of the day, to realize that from an outsider’s perspective, Barnum appeared very mellow and in control.

I think I said something to the effect that, no, this was new since he’d recently been neutered.

Now that I am starting to train Barnum to wear his SDiT harness and pack, with its badges on it, I’m thinking about getting some custom-made ones. I got the idea from someone who made a placard for her dog’s mobility harness handle. It says, among other things

Questions Stress Person

~Please Stop~

Brain Injury

I think I am going to see if I can make or buy something like that. It was hard enough dealing with all the questions when it was just MCS and CFIDS I was dealing with, but now with further brain impairment from Lyme, plus with having a dog who will be much harder to get up to scratch in public access work, I can’t deal with all the people. I just can’t deal with them.

Unless . . . Kathy Griffin? Margaret Cho? Are you out there?

– Sharon, the muse of Gadget (I never understood what the big deal is about other people, it’s not like they’re DOGS), and Barnum, SDiT and inquisitor magnet

6 Responses to “A Typical Atypical Day in the Life (Part II)…”

  1. 1 Kat July 6, 2011 at 3:45 am

    Boy I have met some Unclear On The Concept people! I don’t look all that disabled myself and sometimes I get crabby with people who don’t understand me and then they give me dirty looks, like the cashier at the pharmacy the other day. I didn’t like her, I could just FEEL her thinking mean things about me by the way she looked at me.

    Now my disability attorney… every time I go in to see him he says “Well you don’t LOOK very anxious right now”… umm gee, ya think that’s because I had to take my anxiety meds just to get out of the house? 2 milligrams of Klonopin will do that to ya! I think he wants me to get in front of a judge and shake and shiver and cower in fear… well it won’t happen because I won’t even be able to GO without my Klonopin.

    Ugh, sorry for the venting, I guess that’s just been on my mind lately.

  2. 2 Sharon Wachsler July 6, 2011 at 12:16 pm

    Vent away! It is, after all, Waspish Wednesday.
    That is seriously FU. I think people say things like that because they think they’re being supportive, but for me, anyway, I end up feeling lonely and frustrated, because I want to be understood. I want to have my reality appreciated.
    I also remember back when I used to have panic attacks, and while I was feeling that the floor was sliding around beneath me, and having the “I’m having a heart attack and dying” feeling, part of the panic attack was that I was frozen, unable to move or speak. I FELT as if I must be radiating distress, but other people had NO idea that anything was wrong. To them, I think my blank frozenness appeared as serenity: I just sitting there, saying nothing — what could be wrong? In my head, I was screaming, “Help me, help me!” And they’d chat away, with no idea.
    It was a painful disconnect for me. You would think that a lawyer who you’re seeing ABOUT your disability would “get it,” but sadly, Unclear on the Concept seems to be an epidemic, striking anyone….

  3. 3 Karyn July 6, 2011 at 2:20 pm

    Oh My! What can I say. I am afraid there are times that I let the UCOTP have it. They just deserve it ya know LOL
    I don’t have energy to bathe Thane every day nor can his skin and coat in its condition tolerate such so I make it very clear when UCOTP enter my personal space that they are to leave well enough alone.
    I think I have a link btw where the people will make custom patches. If you come up with what you really want- I bet they would do it. No knowledge how toxic it could be for who knows how long though.
    I’m sorry your personal air purifier died. Mine did years ago from the same problem- rain.

  4. 4 staticnonsense July 15, 2011 at 7:44 pm

    we could throw a fish at her, see if she prefers that ‘fragrance’. we’ll have to make sure it’s an unusually stinky one tho, otherwise she might be unclear on the concept.

  5. 5 Sharon Wachsler July 15, 2011 at 7:59 pm

    Ha ha ha. If I did that, though, I’d have to say, “But I’m not WEARING any rotting fish!”

  6. 6 staticnonsense July 15, 2011 at 8:00 pm

    but but, the perfect opportunity! it would be yours!

    ‘i’m not wearing any rotting fish, but YOU ARE!’


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