Archive for the 'Writing' Category

Why Barnum Is No Longer My Service Dog

Hi!

I don’t blog here at After Gadget anymore. I moved to SharonWachsler.com over a year ago, but I still get notices from WordPress telling me that new people have subscribed to After Gadget. This post is for you subscribers to tell you my REALLY BIG NEWS and to invite you to subscribe to my ACTIVE blog, sharonwachsler.com because this blog you’re subscribed to here generally has no new content!

Moving alone: My big news is that I no longer have multiple chemical sensitivity (MCS), and I no longer have chronic fatigue immune dysfunction syndrome/myalgic encephalomyelitis (CFIDS/ME), and I no longer have chronic Lyme disease and coinfections! Thus, I no longer need a service dog! Barnum has been “career changed” to “demo/training/sport dog” as I work my way toward becoming a professional dog trainer.

I am currently interning with two trainers, Caryl-Rose Pofcher and Elise Gouge. I’m learning tons from both of them.

Barnum and I have not started our sport training yet. He has had an ear infection for 16 months (no, that’s not a typo!) which has been treated with everything you can imagine, from ointments to oral antibiotics to acupuncture to full-sedation ear flushes. We think this very nasty chronic infection is due to underlying hypothyroidism (already being treated) and food allergies (which we’re sussing out now). This means that he’s on an eight-week trial of ostrich and quinoa. Although I have found ways to do treats and toys with ostrich and quinoa, it’s incredibly expensive and time-consuming, so I’m waiting to do classes with him till the food situation is easier. We will start introducing new foods into his diet in three weeks and see how he does with them. (Yay!) I already know he’s allergic to chicken. I am really, really hoping he is not allergic to beef, pork, turkey, and/or duck.

If you want to keep up with me and Barnum, or if you want to know how I recovered my health after 18 years of severe, disabling illness, please check out my current website, SharonWachsler.com. That is where I blog now. That’s where I have info about my writing, consulting, dog training, etc. If you want to skip directly to my recovery story, including “before” and “after” pictures and videos, read the post I published a few days ago. If you want to learn more about neuroplasticity and HOW I recovered, visit my page on neuroplasticity and my recovery.

I’ll leave commenting open here for a short time to support ease for readers who are not familiar with my new/current blog, but my strong preference is for you to comment on my new site (so I don’t have to keep logging in and out of two different websites). Thank you so much for your support and interest in my blogging and all-things-dog over the years! I really appreciate all I have learned and continue to learn from you!

Love,

Sharon and Barnum, Former Service Dog

After Gadget has moved to SharonWachsler.com

Howdy.

If you subscribe to After Gadget by email you should already have had your subscription transferred to my new blog at SharonWachsler.com. If you follow this blog by other means (RSS, for example), I hope you’ll follow/subscribe at my new blog since I don’t plan to post new content here anymore.

So far there’s one new post up, and I anticipate getting a couple more posts up in the next few days for Blogging Against Disablism Day (BADD), the Assistance Dog Blog Carnival (the deadline has been extended! Rejoice!), and a possible book contract announcement!…

UPDATE: New posts are going up all the time at sharonwachsler.com. I don’t anticipate posting any new material here, although I will keep all After Gadget pages and posts up as archives. If you’d like to support my work, please spread the word about my new site! Thank you!

We’re Ba-ack . . . and We’ve Moved!

Hi everyone.

Barnum and I are still around. I’m still having issues with my hands and wrists, but it’s not as severe as it was, thanks to ice, rest, and a change of medication.  In case you’re curious, I have tenosynivitis, which is basically tendonitis of the wrists, and some tendonitis in my hands, too. I’m doing things like icing three or four times a day, researching wrist braces that I can tolerate (most are made with neoprene, which is super toxic and not an option for me due to my MCS), and trying to mouse and type less. It seems to have been caused by a combination of the Lyme drug I was using, Rifampin, damaging my tendons, along with my constant computer use and my various other inflammatory diseases. My OT said it was “the perfect storm.” Terrific.

I’ve tried various software and hardware solutions:

  • I’ve got a more ergonomic keyboard now and am still trying to find a “pointing device” (mouse, touchpad, etc.) that doesn’t injure me more.
  • I got speech-recognition software (Dragon Naturally Speaking), which works pretty well for things like emails when my voice is also working well, which is about half the time. The other half of the time, when the dysphonia kicks in, Dragon is completely useless. And using it for editing and blogging is mostly an exercise in frustration.

So Far, Barnum hasn’t been much help with this new disability. The main things I’ve had to change our how a transfer out of bed and how I type, and Barnum can’t help with either of those. In fact, Barnum has been living up to his full Bouvier des Flandres potential as a service/hindrance dog: he broke my computer.

I have an all-in-one computer, which is basically like a screen with no tower. The CD/DVD disc tray slides out of the side. The computer lives on my overbed table, and I live in bed. And Barnum spends a lot of his time on my bed because otherwise we wouldn’t get to interact much!

One day, I’d taken out a disc and was about to put in another one, and Barnum glimpsed Something Very Exciting out the window and whipped his big, hard, heavy Bouvier head around, smacking my disc drive as he went. The disc drive cracked and a piece fell off. Barnum, of course, didn’t even notice that he’d hit anything.

I got the drive replaced, but even though that was a hardware issue, not a software issue, ever since then my computer has been extra glitchy. Let this be a lesson to you. (I don’t know what the lesson is, except maybe, “Never ever wever bever leave your disc drive open, especially if you have a big, enthusiastic, klutzy dog in the vicinity.” Yeah, I’m gonna go with that as the lesson.)

Anynoodle, it especially sucked because I COULD NOT USE MY HANDS and I didn’t yet have my speech software, so I was extremely bored because now I couldn’t watch DVDs, which — aside from listening to books on tape — was about the only form of entertainment or activity available to me. And what is the thing that has been the most buggy ever since I got the drive replaced? The media player. Le sigh.

I’ll post in the future (at my new blog) about the training we’ve been doing. The tedious training has been extinguishing barking out the window which is a behavior that I created and reinforced for a long time before I realized I was the cause. Facepalm, indeed.

The more fun behaviors, on those rare days I’m up to doing them, are working on calm behavior for hind toenail trimming, which involves clicking him for tail position (which I’m using as an indicator of his level of arousal) and teaching Barnum to carry a bag and deposit it in a box near the kitchen. Once this behavior is solid, I can have him deliver dishes and things I’m done with to my PCAs, even when they’re not here. It will be quite a while before that’s a finished behavior. I hope to blog about these training issues in the coming weeks . . . but not here!

Which leads me to my Very Exciting News:

My brand new website is up! Yeehaw!

Do you want a tour?!

You do? (I’m just pretending you said yes.)

GREAT! Follow me. . . .

This is the foyer. Some people call it the “home page,” but I think foyer sounds better (especially if you pronounce it the French way — foy-`yay!) — or the vestibulary, if you prefer.

As you can probably tell, the walls (and ceilings and floors) have just been cleaned and painted (all nontoxic virtual paint, of course), so I hope you don’t mind taking off your shoes. And your dogs’ shoes. Thanks.

OK, we’ll start our tour with the south wing of the house. First stop is the writing parlor. all furniture hasn’t been moved in yet. We’ll get there. But adjoining the writing parlor is. . . .

The literary salon! Where discussions about being a writer with a disability or writing about disability take place. And you’ll notice just off to the side, this room leads to an even larger room which is . . .

Yes, I know it’s empty now. There are just some packing crates and suchlike. BUT, this is the nursery of my mind. This room — Crip Erotica: The Book! — is the one I am the most excited about! I have been dreaming of building this room for years, and I already have a lot of the plans drawn up. I am really looking forward to using this website is to nurture, support, and grow what will be born in this room.* But it takes a village, to uh, you know, create a crip smut collection. I don’t know which village that would be, but I’m hoping to start finding the villagers soon. (More on that later.)

Moving to the next room is the disability erotica I’ve already published. This is cozy, don’t you think? There’s art on the walls. Has a more lived-in feel. I’ve been hanging out in this room for over ten years! It’s helped give me the confidence to build the “nursery” mentioned above.

Now, if we’ll take a stroll across hall we can enter the north wing of the house, where you can see the Activisting center. My longtime readers will find posts you remember about disability rights, access, environmental health issues, service dog awareness, and other assorted (no, not sordid — that’s the south wing) posts.

And I’ll still be blogging about lots of the stuff you’re used to. For example, I’m writing a couple of posts now for the Assistance Dog Blog Carnival. I’m going to try to get those of you who are WordPress subscribers to After Gadget transferred over as subscribers to SharonWachsler.com. I hope the rest of you will subscribe to the new website/blog, too. (Pretty please?)

See you all at the new pad (I hope)!

Peace.

-Sharon, the muse of Gadget, and Barnum, Disc Drive Destroyer

I’m Writing Again

Back before Gadget died, before Barnum was born, before I started blogging, before Lyme disease ravaged my life, I was a writer. And now I am becoming one again, thanks in part to you reading this blog and encouraging me. Thank you!

Back in the Day

Breath and Shadow logo. A circle in tones of brown, peach, and mustard. There is a silhouette of a face that looks like a woman's face breathing out and inside that as a shadow is a second face which seems more like a man's face. Below that are the words Breath & Shadow in white letters.

Disability Literature and Culture

Yes, Virginia, there was writing before blogs. I used to manage and edit Breath & Shadow, a literary journal of disability culture, and I wrote occasional essays and articles (some humor, some disability studies), short stories (usually erotica, though not always), and poems for a variety of paper and online magazines, newsletters, papers, journals, and anthologies. From 1992 through 2006, I slowly built up a writing career. It was a challenge because I was disabled by chronic illness very soon after I graduated from college, so there were many years where getting published at all was a big deal each time it happened.

In January of 2007, I moved house, which I spent months trying to recover from. That summer, I got Lyme disease, which picked up my world and shook it like a snow globe. A lot of the time, my world still whirls around me in chaos. From 2007 through 2010, I did almost no writing. I handed over the reigns of Breath & Shadow to another editor, to whom I’m very grateful. During my most extreme years of illness, I did manage to write a couple of essays — a grueling undertaking — and a very small number of short erotica pieces. I also conducted periodic interviews of activists with multiple chemical sensitivity (MCS) for Our Toxic Times,* the newsletter for the Chemical Injury Information Network. If you have MCS or want to keep abreast of issues relating to environment and health, I highly recommend joining. The newsletter is excellent, and you will be supporting a 501(c)3 nonprofit that puts every penny to good use.

Logo for CIIN -- a merry-go-round pony, blue on white.

MCS: Roller coaster or merry-go-round?

Aside from the interviews, most of the stuff that got published in that time period were pieces that had been written earlier. Some were reprints; others were pieces that were waiting for the right home. And, after Gadget died, in December 2009, I started this blog. Blogging, I discovered, did not require the extremes of care, editing, proofing, and other work I usually put into writing. It offered me some slack that enabled me to continue writing.

“Professional” — or something**

Slowly, in the past two years, I have begun to write professionally again. I’m still hampered by severe swings in my cognitive and physical functioning and by needing to spend so much energy on training Barnum, but I’m managing to pick up a slow, stuttering sort of momentum. I know many of you read this blog because you’re interested in the topic of service dogs, dog training, recovering from loss, and other topics I cover. Others of you have told me you subscribe because you like my writing. I’m preparing for a big writing undertaking (a book, actually), and it would be very helpful to have more readers “follow me” to some of my other writing sites when my book project devours my soul takes over my life becomes the focus of my passion.

I wanted to tell you where else you can read my writing and ask you to subscribe/follow me on those sites, because I don’t generally post here about my writing elsewhere. I have some big projects I’m working toward — I hope to unveil the details about The Book in upcoming months — but meanwhile I need to keep stretching and exercising my writing muscles that are a bit stiff and atrophied from disuse. I would love it if you’d join me in some of my new writing ventures!

Dykes, Dogs, Disability, and . . . Maine?

Here’s where you can find some of my work:

– My writing blog, Bed, Body & Beyond, focuses on life as a writer with disabilities. Although historically I haven’t posted there as often as here, I have been posting there more frequently lately. I also put a lot of care into the posts that appear there. Sometimes a great deal of research and thought goes into a single post, such as this one about the language of disability.

Sharon sits in her powerchair, which is backwards; both Sharon and the chair are facing away from the camera. The chair has a gray seat and wheels, with a cherry-red base. Sharon wears a tan trench-coat, and she is holding it open on both sides, as if she is flashing whoever is in front of her. All that can be seen of Sharon are her naked calves, her feet in four-inch-high patent-leather heels, her hands pulling open the trench-coat, and her head. She is turning her head toward the camera, so her face is in profile, smiling mischievously. Her facial expression is saucy, letting you know that she does not take herself too seriously.

The longest alt tag ever?

Lately I’ve focused more on being an erotica writer, but so far I haven’t actually published anything x-rated on my blog. However, there have been requests for excerpts, so I might start posting some teasers, perhaps focusing on stories with a disabled protagonist (hint for upcoming book project!). Rest assured, if I do post something explicit, I’ll put NSFW (“not safe for work”) in the subject line so people can make an informed decision about whether to read it. Most of the time, so far, material on that site is not remotely explicit.

Recent posts include interviews with editors of books in which my work has appeared in 2012, a discussion on the language associated with disability, some reviews of my work, and pages with blurbs and links to online and book publications. As my work gets published elsewhere (I have essays, fiction, and possibly poetry coming down the pipeline) I’ll post interviews, excerpts, and links. I’d love if you subscribe/follow my writing blog! (Note: This is a Blogger blog, which means that subscribing by RSS is easy for anyone, but subscribing by email requires doing a Captcha [“word verification”]. If Captcha is a barrier for you, please contact me and I will subscribe you. I apologize for the inconvenience.)

An oval with two clasped hands reaching above the words Ability Maine in white letters on a black background that suggests mountains and a green background above the hands.

I’m ba-ack…

– Ability Maine — the website of disability news, views, information, and literature, especially (but not exclusively) with a Maine focus. One example is an interview I did with Arnold Mann, the investigative reporter for Time and USA Weekend who published a fantastic book on corporate and government complicity and coverups of chemical injury.

I’ve also started a blog for Ability Maine — Ability Maine Blog. At the blog I post blurbs and links about new content at the main Ability Maine page as well as its literary journal, Breath & Shadow. I also have started posting short, time-sensitive posts relating to disability news, events, culture or other pieces of interest to the disability community in Maine or around the world. Subscribing to the Ability Maine blog is a great way to read my new writing and found out about information of interest to the disability community. Those are actually *short* blog posts, which is a rarity with me, you know. (Note: This is also a Blogger blog, which means that subscribing by email requires doing a Captcha [“word verification”]. If Captcha is a barrier for you, please contact me and I will subscribe you. I apologize for the inconvenience.)

Outline sketch, black on white, of a dog's head and neck with a leash or harness draped around his shoulders. The profile is of a flop-eared dog like a Lab or Golden.

IAADP logo

Partner’s Forum, the newsletter of the International Association of Assistance Dog Partners (IAADP). I have written occasional articles for PF for many years, usually training tips or equipment ideas. Now I am also helping the editor, Joan Froling, with locating, editing, and writing work on what will hopefully be an ongoing basis! You need to be a member of IAADP — a 501(c)3 nonprofit organization — to get the most recent issues of PF. Anyone is welcome to join. It’s a great way to support and learn about what’s happening in the assistance dog world. Partner members (those partnered with a working assistance dog) also receive additional benefits with membership.

– Amazon.com Listmania — I now have two listmania lists at Amazon of most of my work that’s appeared in books. (Work from magazines and such is more difficult to make available.) One list of books are nonfiction pieces (essays or humor) and the other is lesbian erotic fiction.

– The Chronic Writer(??) — Way back in the day, I wrote a monthly humor column called Sick Humor for Ability Maine. It was an outgrowth of my comic strip by the same name. “A twisted look at life with disability.” When I was invited back to write for Ability Maine, I really wanted to start writing again about the life of a writer with chronic illness, although I wasn’t sure I wanted it to be purely humor/satire. I wanted to do interviews with other writers with disabilities or chronic illness, write about some of the complexities of writing with impaired cognition and limited energy, the politics, the unexpected gifts of writing. I planned to call it The Chronic Writer.

I haven’t yet written an official Chronic Writer piece, although I’ve written lots of partial pieces, and I’ve published pieces at Bed, Body & Beyond and at Ability Maine that could certainly fit under the “Chronic Writer” rubric. My current plan is to move both my blogs (After Gadget and Bed, Body & Beyond) to my sharonwachsler.com domain (which is very, very old and outdated, so I am not linking to it) and launch The Chronic Writer there. That website would be the home for all things Sharon-the-writer-Wachslery and would also allow me more freedom than using Blogger or WordPress freeware (especially as I’ve recently been made aware of an issue with WP Terms of Service). But, it’s been my plan for years to update my domain, so let’s call this a work-in-progress in progress, shall we?

So, that’s my big news. It’s a bit scary to make this announcement as if it’s some done deal, as if I can be relied upon to keep producing. Because if I had a dollar for every time I’ve said, “I’m doing better. I’m starting to write again,” and then discovered that I couldn’t even finish a piece of flash fiction or a blog post . . . I would have made a lot more money than I ever have on anything I’ve published! But that is, after all, the way of the Chronic Writer.

– Sharon, the muse of Gadget, and Barnum, SD

*I’m still doing OTT interviews when time and energy permit, so if you are chemically injured, and you are involved in any form of activism, very broadly interpreted, please drop me a line, and we’ll see if you’re a good fit for my series. My goal is to profile one activist from each US state (and then perhaps I’ll move on to US territories and other countries after that).

**My definition of professional writing: getting paid occasional paltry*** sums for huge amounts of work OR getting paid nothing to have your work appear in academic or literary venues. This definition is slightly different if your name is J. K. Rowling or Stephen King.

***I recently got a royalty check for $1.36. That was $1.36 more than I had expected to earn in royalties for the year for that piece!

REPRISE life w/lyme, mcs, cfids: a different kind of typical atypical

This post is for the June Disability Blog Carnival at never that easy. The topic is “Arbitrary” — anything on disability you want people to read. I chose to reprint a post that I wrote in May of 2011, with this new introduction. May is both Lyme Awareness Month and MCS Awareness month, and I was trying to blog a lot on both illnesses that month.

The reason I chose this post is that it’s not at all like my typical posts. As an editor and proofreader, I usually try to have “clean” posts — proper capitalization, punctuation, grammar, and spelling. In this post, not only did I not conform to standards, I actually stopped myself from backspacing to eliminate errors, something I normally do a great deal. I didn’t do this to be annoying. I did it for two reasons, and I’m reposting it for a third.

One reason is that when you’re severely in pain and exhausted, things like holding the “shift” key and another key at the same time to create a capital letter, or needing to take a hand off the keyboard to move the cursor and then get that hand back on the keyboard to correct an error, can be too darn hard. That effort often keeps me from writing. I really wanted to blog that day, and I didn’t want my pain and illness to stop me. This was me saying, “Fuck you,” to my limitations, and to the tyranny of internalized ableism.

The second reason is that I do a great job of “passing,” especially in written form, around my cognitive impairment. People who are not part of my day-to-day don’t understand — and often, really, don’t seem to believe — the amount of cognitive impairment I have. Being basically smart, well-educated, and articulate, I have more to fall back on than someone who didn’t have these benefits. Also, there are tools like spell-check and grammar-check, both of which I use. I usually reread a post, sometimes several times, to fix errors, and I do a lot of backspacing to fix errors I find in previous sentences.

However, the biggest toll that my disabilities take on my blogging is in volume, frequency, and organization. I tend to write really long posts, and that’s often because I can’t keep track of what I’ve already said. I often make the same point repeatedly because I’ve forgotten that I’ve already made it. I start posts, run out of spoons, plan to finish them another time, and then never do — because I’m too sick. Because I’ve forgotten the point of what I wanted to say. Because I’ve written another post on a similar theme, forgetting that I already had something written on that topic. Because the content is no longer topical. I have approximately a hundred partial posts in my drafts bin here. Of course, my readers don’t see all these failed efforts because I don’t post them!

The third comment is for all the writers and other language snobs out there, of whom I am one! I am a total “wordie” (as food is to foodies, words are to wordies — or logophile, if you prefer), a grammar geek, a punctuation nerd. I make no apologies for this. AND, there is a difference between enjoying and finding pleasure in well-written prose, in praising readability, and looking down on people who make errors or who don’t know a lot of the basic rules of grammar, punctuation, and spelling. As a writer, I have a lot of online friends who are writers, especially on Twitter. I can’t tell you how many times I read snotty comments about people who write in all lowercase or people who misspell or whatnot. I wanted to reprint the post below to say, “Hey! There are sometimes good reasons why a person might not use the shift key. There are physical and cognitive disabilities that might make following basic rules of grammar onerous or even impossible. Check your ableism at the door, please! We still may have something worthwhile to say.” I believe the post below does have something worthwhile to say, both because and in spite of the copious language errors.

– Sharon

for an MCS, Lymie, CFIDSer blogger training her own service dog.

i’ve been trying to post every day, partly bec i have so much to say and partly bec my stats go way up when i do, and that’s just so reinforcing!

but when u have lyme and cfids and u overdo by blogging, tweeting, posting on FB, etc., and/or train your dog, then u crash.

this is the other side of the typical atypical day coin. a typical day when i’m super super sick, which is not my typical day anymore.

today is not quite a stuck day but it’s damn close. it’s the kind of day that often follows a good day, like the ones i wrote about yesterday and the day before.

can’t get out of bed (move legs) on my own/transfer/go to bathroom, feed myself, brush teeth, etc.  also can’t speak.

this used to be my typical day, when my lyme was bad. now it’s what happens if i overdo or have chem exposures or don’t get enough sleep, and i have done some of all of that in the past week. then i way overdid it and shaved barnum down last nite w/betsy. i knew i was ovverdoing, as the pain and jelly legs and vertigo set in during and after, but the ticks have  been so bad, it needed doing and this was the only time, so i just hoped i could bounce back.

so i was long overdue for a slapdown. and here i am blogging, which i shdn’t be.

but i have a lightweight cordless keyboard in my lap, my elbows bolstered, and reclining. i can’t lift a  fork of watermelon into my mouth, but i can type.

i can’t say, “blog,” but i can type.

i’m blogging because it’s hard to be stuck in ur brain, unable to speak, surrounded by people who don’t know asl, in pain, etc. i’m blogging because i want you to know what it’s like to have these illnesses, which you never will as long as i blog because that gives a fall sense of how functional i am. the act of blogging belies that i’m too sick to blog.

but i want you to  see wha hppens on the days i don’t blog,or i do but i shdn’t. in fact, when i was writing this i kept abbrev and making typos and fixing it but i have decided now as i finish this up (have  done several sessions w/rest between,jumping around) to leave them bec its so much harder for me if i have to move my fingers off asdf  jkl;

i have already fixed so many typos, so many wrong word choices because my brain doesn’t always connect to what my fingers are typing (e.g., if i think “taller” and right “father”). it’s so hard fo rme to leave the errors — i keep fixing them! – but i want u to see the reality.

my pca fed me watermelon and my protein drink, which we did in shifts, over sevaral hours — it is exhausting bec of chewin g and swallowing, bec if she doesn’t put it right directly into my mouth w/out pausing or waiting for me to make minute stretches forward, it’s even more exhausting. and i can’t tell how to do it diff bec i can’t  talk and it’s too exhausting to try to explain bec nobody who has ever fed me has understood these nuances anyway.

and typing or swallowing or chewing gives me palpitations, makes me dizzy, makes me pant. and breathing becomes more of an effort — the diaphragm moving, the rsise and fall of chest, those are all muscles working.

this is lyme and mcs awareness, too (and  cfids, even if it’s not cfids awaereness month)  — the days when u can’t do most things at all and what u do is a huge struggle. this is so much better than what used to be a typical day, where i wdn’t be able to write this blog at all. when i couldn’t  move my hands sometimes. today i can flop them around a bit, i can click, and i can type , as long as my arms are supported.

being a lyme survivor who is also an assistance dog trainer means overdoing it to try to protect barnum and myself from ticks, from further infection, which means making myself sick, doing too much.

these reminders are good for me because last night in the glow of my overfunctioning adrenaline rush, i thought, ” i really don’t need to be teaching barnum to shut and open cupboards or the fridge or all sorts of other skills i’m planning because i’m doing so well now. but it’s better if he’s overtrained just in case.”

then, today, i needed to pee, and my pca was shopping, and i wished so much that barnum knew how to help me with transfers. and he needed to pee, and i couldn’t let him out, and i wished he knew already how to open and shut doors on cue. but not yet. so we waited 45 mins for my pca to get back.

and i ran out of toilet paper after my pca left, and i knew it was in the cupboard five feet away, but barnum doesn’t yet know how to open and retrieve things from cupboards, and there it is — skills i want to teach for the days i need them, all while hoping i never need them, some part of me believing i will never need them and some part of me remembering all the things i needed gadget to do, some of which i’d trained him for and some of which i hadn’t, when i got lyme. reminding me that i can never trust that i will never  have a day liek that (liek this) again.

he did something interesting today. my pca came in and asked him if he wanted to go for a walk, and instead of bouncing around all happy and heading right fo rthe door like usual, he just looked over at me, which was odd. and i thought, does he know i’m sick, and he’s weighing how much he wants this walk against worrying about me?

i don’t know. i could be projecting. but i’ve never seen that before. sure as heck gadget would  never have done that! but barnum is a very sensitive guy, so i’m not sure.

unfortunately, the nurse had to come today to change my dressing. we were supposed to do a blood draw, but i guess even my blood is too exhausted to move because we couldn’t get blood return.

having CFIDS means i’m too exhausted to have facial expression, so i look like i’m angry or don’t care, when really my facial muscles are too tired and weak.

having lyme means i’m in so much pain that i can’t move 90% of my body because the pain and weakness just takes away my ability to move. it’s hard to get this across:

the nurse (photos below) said, “ur in a lot of pain, huh?” and i nodded, and she said, “u haven’t taken your pain meds today?” and i moved my mask so she could read my lips and said/mouthed, “no i did take them, that’s how come i’m able to be out here” (not in bed), but i don’t know if she understood me bec sometimes when people don’t understand they just nod and act like they do bec they don’t want to make u repeat.

but i always desperately want to be heard and understood, so i signed, “understand?” but of course she doesn’t know asl, but she nodded, so i have no idea if she understood my question.

Barnum lies on a black yoga mat next to Sharon, who is in her powerchair with the back reclined all the way and her feet slid off the footplate. She's wearing a large white mask covering all of her face but from her eyes up. One arm is hanging over the side of the armrest, the other is outstretched on the table where a nurse in a medical mask and gloves is changing Sharon's PICC line dressing.
Nurse visit

i sepnt most of the appt w/my eyees shut and reclining as much as i could, but of course i also wanted to use it as training oppty so i clicked and dropped cheese onto barnum’s mat, but then that was too exhausting so my pca stood in front of mat and dopped cheese after i clicked. i have a box clicker with a light touch.

having MCS makes nurse visits a really big deal. u might notice i’m wearing a mask and a black air  filter on a cord around my neck. that’s because even tho my nurse tries to be fragrance free, she lives with people who use fragrance, so it gets on her. and she sees other patients in their fragranced homes. after she leaves, the whole house reeks, and we keep all the doors shut we can so it doesn’t get into the bathrooms or my bedroom. she sits on a wood chair, never on the sofa or putting her stuff on the sofa, because it would absorb the smells. and i can’t let her into my room bec she would contaminate it, and i need a place i can rest and breathe.

now my pca has brought me “lunch” even tho it’s evening bec i forgot to talk to her abt food until the end of her shift, bec i’m so out of it, and now she’s gone and i’m doing better but not well enough to really be able to food myself, so i try to prop the plate on my chest and overbed table and eat with my fingers a few pieces then put plate on bed and rest.

barnum was on my bed, which he’s not supposed to be when i’m eating. the rule is he gets ignored while i’m eating unless i ask him to do something or he alerts to something, but i have no way to tell him to get off, so i just let him be there. besides, it feels comforting. but this is another reason why i am not the consistent trainer i  wld want to be: sometimes i’m not able to be consistent. i know what i’m doing wrong and there’s nothing i can do about it.

i just realized something. i want u to know this bec it’s  important.

i don’t want u to feel sorry for me. i hate pity, honestly. I want to be KNOWN.

because actually,in this moment  i’m happy. maybe that sounds  hard to believe, but really, despite being so sick today, it’s not a bad day. i’m enjoying watching and listening to the birds ouside my window (have a blog post i’ve been working on about birdwatching and lots of photos.)

i feel content. the pain is not as bad now. i have had help mos to fthe time i needed it today and my night pca will be here later.  barnum has been adorable and actually did a few desirable behaviors. i’mnothaving bad payback (reaction) from the nurse visit exposures, partly bec i have all the windows open bec it’s warm today.  a barred owl has started its strange call (they are active during the day – strange birds).

i feel satisfied and glad i was able to do this blog.

i got to listen to a  phone call  (it’s a class — NVC — and i couldn’t say much but i was included, nonetheless; theyh’re my community, everyone else is chronically ill, and i can just listen and be part of it and know i have companionship). i got to tell a friend i love her.

and iknow this will pass. this is my body wisely saying, “sharon! chill the fuck out! stop doing so much! lie around and do nothing! stop thinking! stop training! stop  blogging! stop tweeting! rest and sleep as much as u can. dammit.” after i post this, that’s what i’ll do. because lyme and mcs (and cfids) awareness means people knowing that those of us who enter thepublic sphere in any form, including internet, are making a CHOICE to do that and not do other things, or to suffer physically as a result.

and it means trusting u all, which i do, ur wonderful, to still be there when i get back when i am not posting everyday and trying to be someone i’m not, someone who doesn’t have cfids, lyme, and mcs. and trusting u to know that i love ur comments, but it’s an effort to reply to them, bec that takes work so if i’m slow or don’t reply, that is why. because i have cfids and lyme and mcs. i treasure them. i smile with almost every one.  my heart is full, thanks to ur support and sue eh’s support and barnum and others.

the migraine is setting in now; my body is pissed that i’m not heeding its call. do me a favor, will u? pls post and fwd this link to everyone you think could stand to know about lyme, cfids, and/or mcs. because i’m not up to it, and i know you get it now, because you’ve  seen me at both ends of my spectrum. thank you.

this is me. radio silence.

love,

sharon, the muse of gadget, and barnum, quietly concerned sdit

Taking Blogging Hiatus

Dear readers,

I’ve decided to take a hiatus from blogging. I don’t have a length of time in mind or any hard-and-fast rules about this at all. There are many topics I want to blog about right now: Lyme disease treatment in dogs, ticks and Lyme prevention in general, grief, the overlap between NVC and clicker, disability rights issues, and of course, training Barnum.

However, it’s hard to do things and blog. Right now it’s more important to me to train Barnum than to blog about training him. We are doing Leading the Dance right now, and it’s largely because I didn’t attend to behavior problems that started out as tiny and have now become habits. He needs a lot more foundation work and consistency. That takes a lot of energy for me, both in terms of training sessions, as well as all-day, every-day attention to detail in his behavior.

There are also a slew of things I can or need to do in the summer that can’t happen in the winter — like going anywhere for public access training or taking walks — as well as a lot of house-care stuff that I’ve been too sick to do since I’ve lived in my current home. Spring/summer has come early to New England, and I’d like to take advantage of this to get my house in order, both literally and figuratively.

I plan to continue to participate in the Assistance Dog Blog Carnival. (If you haven’t already, check out the call for submissions for the April issue at plays with puppies.) I hope, if I have time and energy, to finish and post some of the many posts that are halfway written, and maybe to post if something momentous occurs.

I also hope to write for Ability Maine, as much as I’m able. We’re working on getting a blog set up for that so people can comment on the articles. I’ll try to post a link here when I have new material up at AM, and hopefully some of you will join me there. Right now, there are two excellent articles up (yeah, I’m not ashamed to say it); one by Mike Reynolds and the other, an interview I did with medical investigative reporter, Arnold Mann.

We’ll be back!

– Sharon and Barnum

Update: Illness, Writing, Not Much Training

Howdy.

This is possibly the longest time I’ve gone without posting since the early months of this blog. There have been a confluence of events that have brought about this non-postingness.

One is, and I know this will come as a total shocker to those of you who follow my blog, I’ve been really sick. For realz! What with all my chronic illnesses, you’d think this wouldn’t surprise me, but it still kinda does. The issue is that I have been sicker, overall, since Octoberish, with some periods of being much sicker and/or much longer than usual. Every once in a while, I have an “up” day, and I think, “Huzzah! The suckiness hath lifted!” But nay, ’tis not so. The form changes, but the suckiness continueth. For the last couple of weeks, the major issue has been migraines every day.

This is really the first time since my Lyme treatment started to work, around spring 2009, that I have plateaued or dipped and not made a comeback eventually. My doctor and I are not sure what to make of this. A reinfection? An undiagnosed coinfection? A resurgence of babesia (which we had to stop treating because my liver couldn’t handle the antimalarial drugs required)? Or some of the drugs have stopped working? Or are one of the drugs making me sick?

It could also be an MCS thing — foods I’m reacting to that I’m not aware of. Inhalant allergies could have gotten worse, like dust and mold. Maybe there’s some sort of outdoor pollution occurring that I don’t know about that’s doing me in? The most frightening specter of all — could I be allergic to Barnum? I just can’t even deal with the hideousness of that proposition. I was allergic to my cat for years, not knowing he was the cause of my round-the-clock migraines. This worries me.

But all is not gloom and doom. There are good things going on, too. I’ve been working away at helping to organize the fundraising auction for Marlena, my NVC teacher. I’ve learned a lot, and it’s given me an excuse to interact more with some of my fellow students. (BTW, if you want to donate something and you haven’t yet, you have about ten days to get me the info.)

I also have written two long pieces. One is an essay for a really kick-butt anthology on intersections of oppression in feminism (most of the pieces are primarily about race/racism in feminism; mine is mostly about ableism in the feminist movement). The other writing project was a long, complex piece of erotica that was inspired by a documentary I watched on Frida Kahlo. And I’m hoping, if I hear back from various editors in time, and if I’m functional enough, to get in a few more submissions — work that is already done and just looking for a home. (This time of year seems to be heavy with deadlines; I don’t know why, but it always is.)

After I got these two pieces in, I found out that a book that was coming out that I thought had my work in it does not actually have my work in it. My story was accepted by the editor, but when it went to the publisher, they cut it. Normally, I’d have heard months ago, but the editor’s computer got hacked, so her email informing me never got to me. I found it out when I saw my name was not listed on the back cover of the book! It doesn’t happen often, this editor-says-yes-publisher-says-no, but when it does, it really bites. It feels like you’ve been sucker-punched: “You’re in! You’ll get published. You’ll get paid.” Then several months later, “Oh, by the way, the publisher hates your piece (cuz, although nobody says it, they don’t think it’s ‘marketable.’) Sorry!”

But that’s just a blip. The really big problem with writing is that when I write, I can’t do anything else. I can’t train with Barnum. I can’t talk on the phone to friends. I can’t blog. I went more than two weeks without bathing to get the short story done by the deadline extension the editor gave me. And I have to push myself beyond my total physical and mental breaking point to do it.

So, why do I do it? Well, partly because sometimes, when I write, I feel ridiculously happy and connected to myself and some sense of purpose that I never have in any other part of my life. Some of it is that usually these writing gigs pay something (paltry as it might be, and believe me, it’s generally quite paltry), and I have very expensive illnesses, and I worry about spending more (on supplements and air filters and house maintenance and my Lyme doctor who isn’t covered by insurance) than I am bringing in. So, this is a feeble attempt to put my finger in that dam. Some of it is that I just don’t know who I would be if I wasn’t a writer. I think I wouldn’t be me, anymore.

And, along those lines, I am working out a plan with the folks at AbilityMaine to return there as a staff writer. I’m really excited about this. It feels weird because Norm, my dear friend who died three years ago, founded AbilityMaine. So, it took some adjusting to the idea of working there without him, and I sort of flopped around undecidedly for a while. But I do know Norm would be very happy that AM is still in existence, and he was the biggest booster of my writing of anyone I’ve known, so I’m sure he would be happy for me to return. It’s just . . . odd. I will fill you in as developments, er, develop. And meanwhile you should start reading AbilityMaine so you can bask in its fabulousness.

Also, Breath & Shadow, the literary journal I founded, was an outgrowth of AM, and I might be writing for them, too. Again, we’re still not sure exactly how this will all shake out, but if you don’t read Breath & Shadow, you really should, because it’s been in the excellent hands of Chris Kuell since I left in 2007.

One great thing about writing for AbilityMaine is that I will once again get to be a free agent! I won’t be constrained by the whims of the publishing world’s ableism and other bullshittery. As long as I know what the parameters are of what they’re looking for, if the writing is good, it’ll get published. This is such a rare and wonderful and almost-unheard-of-thing in the writing world, I’m incredibly grateful for the opportunity.

Where is Barnum in all this, you may wonder? Mostly on my bed, leaving big piles of dirt and dog-hair tumbleweeds in his wake. His coat is really long now, and he does look gorgeous as long as we can keep up with the grooming (which is a bear!). The good part about me being so consumed in my writing is that he is extremely eager for my attention when I have it to spare (or even when I don’t). So, he’s been extra cuddly, and he’s also very into training on the occasions I’m up to it.

Primarily, we are working on generalizing and learning the cue for turning on and off lights, generalizing and learning the cue for pulling doors shut (as opposed to nudging them shut or pulling them open), and adding some “attention seeking behavior/alert” to his “go find person” skill. (More about that last one in a separate post.) We’re also working a little bit every day on handling/grooming, such as keeping his mouth still with my fingers or a toothbrush inside, allowing grooming of the “sensitive bits” of his coat, recall, fetch, and working retrieve.

This Monday, February 27, will be our two-year Gotcha Day anniversary! Can you believe it? I haven’t decided what I’d like to do for it. I really want to do a photo essay or video of all the things he’s learned in two years, but between technical difficulties and extremely low energy, I think that’s unlikely. But, I am very proud of him.

Good night all. Hope to post on or before our Gotcha Day.

– Sharon, the muse of Gadget, and Barnum, SD/SDiT


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