Hackers Have Gotten Smarter: Some Tips for What to Look For

And in other inexplicable computer news, this post got published with NO CONTENT, and without me hitting the “publish” button. Argh! (Deep breaths. Deep breaths.)

Here are some things the hacker did that made it harder for me to clean up the mess and that tricked some people into clicking the link:

1. They did it during the night. At 4:30 EDT, when I was asleep. Not that it took them more than 20 minutes to email all 1000 people in my address book, but if I had started getting those bounces when I was awake, I’d have realized something was up sooner.

2. This one is key: They only put in five or six addresses per email. The main reason to do this is because AOL has bulk mailing policies to prevent spamming. If you email more than ten people in one email, it can trip it. If you email many people in a few emails, it will trip it. So, AOL didn’t shut down my account and stop them.

3. Putting only a few addresses in an email also tricked some people who received the email into thinking it was legit, because we are used to spam emails having very long To: lines. Someone even said, “I clicked on the link because it was from you and there were only a few people it was sent to.”

4. They put a different subject line in every post, so I couldn’t just email everyone and say, “If you got an email that says “blah blah blah,” delete it. (I also didn’t want to email everyone because then I would be bulk mailing, AOL would shut down my account, and I would again have over 400 bounces to delete.)

5. They put a signature line in. Not my signature, but every email had some sort of random quote in the signature field, so it looked more authentic, if I was the kind of person who quoted people in my signatures (which I’m not, but a lot of people do).

Moral of the story, kids:

If you get an email with a link, and basically no info as to what the link is about, do not click the link! Email the person whose account it is from to find out if it’s legit or if they’ve been hacked.

This is particularly true for anyone you have not heard from in a long, long time. Someone you interact with frequently, you know what they have in their signature line and you know what they’re involved with. It’s easier to spot a hijacked email. If you get an email from out of the blue from someone you haven’t interacted with for a long time, that is a big red flag right there.

When in doubt, DON’T CLICK ON THE LINK. It doesn’t matter if it’s from someone you know. That’s why hackers steal others’ accounts!

- Sharon

P.S. If you get another fishy email from me, please tell me. There still seems to be the occasional fishy thing happening, and I can’t tell if it’s just delays in certain emails being process, or if my account has been breached again.

Good Grief: The Healing Power of Communal Mourning

I’ve written about grief on occasion here, and usually I get comments along the lines of, “I’m so sorry this is so hard for you.” Now, I always love to get comments! I love to know people are reading, and I’m interested in how my posts affect them and what they have to say. And I appreciate their heart-felt sympathy. At the same time, these comments have surprised me because I’ve been so relieved and happy that I am finally able to grieve. It sounds strange, but to finally be able to blog about my grief and to actively grieve is a wonderful gift. I celebrate it.

I think some of the dissonance between how I feel and how others guess I feel might have to do with a few factors, maybe in combination:

• the difference between the noun (grief) and the verb (grieving)
• my perspective on grief, which is at odds with our American culture’s relationship to grief
• the fact that the ride I’ve been on in the last few years is not one most have taken. (Thank God.)
• how I am coming to experience and express emotions since I started practicing Nonviolent Communication (NVC).

What do I mean by the ride I’ve taken? Well, I experienced a truckload of losses in a short time, and both because there were so many things to grieve, and because I was in a fight for my life, and because the very losses I incurred severely reduced my resources for coping and grieving, I was just way too overwhelmed to process it all. (If you know my story, you can skip the bulleted list below.)

Beginning in November 2007 and culminating with Gadget’s death in November 2009, I suffered the following losses:

• basically overnight, due to Lyme disease and other tick-borne diseases, I lost the ability to speak, move my limbs, sit up unaided, tolerate sound/touch/light/movement, which then involved the loss of communication and of my independence and freedom to go to the bathroom, get out of bed, feed myself, bathe, brush my teeth, etc., without a great deal of assistance
• along with all the above was intractable pain, both body pain and continuous migraines. Pain isn’t usually described as a loss, but it’s horrible and traumatic, and it definitely involved loss of joy and ease and all sorts of things that are hard to put into words
• also along with this, I experienced major mood and behavior changes (due to neurological damage from tick-borne diseases), which actually left me feeling like I had lost my self. I hadn’t even thought it was possible to lose myself before, and the fact that I could be taken over like that by feelings I hated and couldn’t control was terrifying, painful, and a source of shame (compounded by the way others reacted to my moods and behavior)
• loss of important parts of my mind/cognitive functioning, including interest in writing, sex, or any form of creative expression
• all this led to serious relationship damage with virtually everyone in my life, and the loss of trust and safety I had previously felt
• then I went through a natural disaster which I’ve written about before, which caused me PTSD and further losses in my sense of safety in my home and in the world
• immediately following that, my best friend of 16 years (and my main interpreter) ended our relationship, and her sister, my other best friend, and I experienced a tremendous strain in our relationship, so that we barely spoke
• one of my best friends, Norm Meldrum, died
• my therapist terminated with me
• other friends left me or died
• Gadget, my service dog, was diagnosed with lymphoma
• Gadget died of mast cell cancer
• my remaining best friend finally ended our foundering relationship

That’s a crapload of loss. In two years, I lost almost my entire social network and family of choice, my service dog, my functionality, and virtually any feelings of self-worth. Most of the meager sense of self I had was tied up in being Gadget’s partner. He needed me. We were a team. He was not resentful about doing things for me, and it was my mission in life to save him, to keep him alive. I believed that even if I didn’t matter to anyone else, I mattered to him.

And then he died, and part of me died with him. It was too much. I couldn’t bear it. Something in me broke.

When I sought out support, people kept telling me to journal about him and to “let my feelings out,” to cry. But I couldn’t. I physically couldn’t journal (by hand) for the most part, and when I tried, when I could type, I didn’t know what to write. Nothing came out — and I’m a writer! I tried to cry and nothing happened. I just felt blank. I felt empty. The other people on my dog grief list talked of crying every day, many times a day, and I’d think, “What is wrong with me? Did I not really love Gadget? What kind of cold-hearted freak am I?”

There were two times I connected to my grief over losing Gadget, and they were so horrible, I can’t describe it. It was like being thrown into a bottomless black pit. I felt like my heart was squeezed into the size of a walnut. The emotional pain was so bad, I wanted to die. None of this feels adequate to describe the experience. If my feelings were a painting, it would be Edvard Munch’s The Scream.

I couldn’t go back there.

So, for a long time, I just felt closed off and careful and scared. This was grief (the noun). Grief can take any form — anger, sorrow, numbness, depression, anxiety, a sense of unreality, etc.

My grief was mixed up with the judgements I’d internalized based on what people said when they were upset with me. I didn’t believe I could connect with anyone or open up to anyone because I thought I was a horrible, selfish person — that’s what my friends told me when they ended our friendships — and that if I revealed any of my true feelings, people would be disgusted and angry and see me for the monster I was, and they would leave me, too. And because I couldn’t grieve, I couldn’t feel Gadget. And because I couldn’t feel him, I couldn’t grieve him.

And now, things are different. They are changing. One big difference is that I’m not dying anymore; I’m less ill than I was. I also am not experiencing mental illness anymore, which is a tremendous relief, as it felt horrible to be in so much psychological pain and to not be able to trust myself or my perceptions.

The other thing that has changed is that I’ve been studying NVC. It’s hard to describe just what a huge impact this has had on my life. I started taking classes by telephone, taught by and for people with chronic illnesses and disabilities, about a year-and-a-half ago, though it feels longer. The biggest gift, at first, was that I had friends again. I was part of a community, and I wasn’t a freak or “too needy.” Everyone in my classes had really tough lives; many of them were in worse situations than me. I often felt helpless and heartsick at what they were going through, but I also appreciated that I had something to offer, that just being a supportive presence was something. It felt good to be contributing to other people again. Also, I was shocked to discover that people seemed to like me. For quite a while I thought I was hoodwinking them into thinking I was a nice person. Eventually I started to think I might not be the monster I thought I was.

Then, as I practiced NVC more, I started learning how to apply it to myself and others. NVC is about empathy and compassion. It’s about learning to recognize judgements of ourselves or others and how to translate those judgements into an understanding of ours’ or others’ feelings and needs. I started to realize just how much I judged myself — all day, every day. I started to be able to give myself compassion. I started to be able to accept others’ compassion for me. Very, very slowly, I have been able to communicate better with the people in my life, to be less triggered, to take things less personally.

A turning point came for me on October 2, 2011. There was a 50-hour-long NVC empathy phone call. It was international, in celebration of Gandhi’s birthday. I would call in and mostly listen for a couple of hours here or there, but I felt a need building in me to be heard, to express the grief that was rising up in me. Eventually, I felt like I could hardly breathe for choking it down.

I asked for empathy from these people who were strangers, from all over the world. I was terrified of doing it, and yet I knew I needed to do it. It was a very vulnerable experience. I felt scared and naked and anxious. I was afraid they would all be disgusted by my neediness, that they would see me as selfish and pathetic. But I was desperate to share my grief.

I started talking about Norm and Gadget, and I cried and cried and cried. People made empathy guesses. People gave me support. Nobody judged me. Everyone was grateful to me. They thanked me for sharing myself with them. They thanked me for my vulnerability and authenticity. They were moved. Supporting me had met needs for them. I couldn’t believe this. I had to ask the facilitator, “Why?” How? How could my outpouring of pain possibly feel good or useful to anyone else? I don’t remember what she said, but I remember that I believed her. Through this haze of pain, although I can’t remember most of what I said, and even less of what was said to me, I felt like I was being given a second chance at life.

It was so hard to believe that I gave anything to anyone that night, and yet, everyone was being honest. Rather embarrassingly, I keep “running into” people on NVC teleclasses who remembered me from that night. Some people have told me that it was the session that touched them the most.

I have to believe them, because one of the aspects of NVC I love the most is the honesty. I have not run into any game playing. People say what they feel or need, even if it might be awkward or not in line with cultural norms of politeness, but in a way that is compassionate toward themselves and others. They are not being mean; they care about others’ feelings, but they recognize that their needs and feelings are nobody else’s responsibility. There is no blame. It’s like the anti-guilt trip.

That call was life-changing. I felt like a hundred pounds had been lifted off my shoulders. I knew I needed more of that. The opportunity to grieve in community.

That hour of sobbing my heart out to a big group of strangers has had a big ripple effect in my life. I finally believed I was on the road to grieving — the verb. To not just be mired in grief, but to take an active role in my grieving. It hasn’t been smooth or clear or easy. A lot of the time I still get stuck and shut down. It’s taken me quite a while to learn how to grieve, and I’m just beginning. I have so many things to grieve, it will probably take many years before I have touched it all.

For now, most of the grief that’s coming up is for Gadget and Norm. I am hardly ever able to grieve by myself. The exception is occasionally when I’m writing a blog post like this one, feelings will come up as certain realizations hit me when I type them. Mostly, however, I grieve with other NVC people. That feels safest to me. That is where I can express my sorrow and have it welcomed and held with tenderness. I get empathy and do not get judgements — no “shoulds” or suggestions or advice. Just deep listening and connection. And then, when I get off the phone, after crying my heart out, I feel good. I feel lighter.

I sometimes feel happy again. Not just okay, but happy. I had forgotten what it felt like. At the check-in for an NVC class a few months ago, we always give a feeling and a need we’re having in that moment. I was groping around for the feeling I was having: Peaceful? No. Calm? No. I couldn’t put my finger on it. It was . . . not unhappy. Then I realized, I was happy! I felt almost guilty announcing that!

This is one of those counterintuitive things I keep having to learn over and over again, all my life. To get to the joy, I have to go through the grief. After sobbing my guts out, I’ll be able to laugh.

I have not yet learned how to grieve by myself. I think I need to keep being in the safe space of other empathic people who welcome my grief to feel safe enough to be that emotionally raw. I am afraid of grieving by myself, because I know that abyss is potentially there, and I could fall in. With others, I feel held. I can let the wound bleed, but I don’t have to worry that I will bleed until there is no life left in me. I can just let the wound of grief be cleansed by the outpouring and let the scar grow back over it and feel a little bit more healed.

I celebrate that I am able to grieve, that I am able to connect with my feelings about Norm and Gadget — not just cardboard cutouts of feelings I imagine I should have. I celebrate that there are people in my life who are not just willing, but eager, to take these journeys into my heart with me. I celebrate that I am able to feel a fuller range of emotions now — joy and laughter and hope, along with sorrow and grief.

I think our culture is not comfortable with grief. It’s messy and unpredictable and raw. We don’t know how to “fix it,” so we try to shush it away. But really, it is a way to celebrate life — that we are still here to grieve. That we suffer is part of being human. So please, congratulate me — I’m grieving.

- Sharon, the muse of Gadget (very much alive in me as I wrote this), and Barnum, sweetest SDiT

P.S. If you are a person with a chronic illness or disability who might be interested in an introductory class on NVC by telephone, Marlena, my teacher, has spaces available. Contact information and a basic description of the class are here, although the dates and times are wrong. (This is an old listing.)

My Email Was Hacked; Don’t Open Weird Link

Hi all,

Just a quick head’s up. If you got an email from me during the night (around 4:30 AM ET) with a strange subject line and weird link, DO NOT OPEN IT. My AOL account was hacked. I’ve changed my security settings and am deleting the 400+ bounced emails now and replying to concerned replies. I apologize to anyone this has inconvenienced and hope nobody clicked the link.

If you get any other suspicious emails from me, please tell me, because it means I haven’t fixed the problem (but I think I have.) I regret, again, that this occurred.

I’ve tried to put the word out on FB, Twitter, and to the list-servs I’m on. I don’t want to email everyone in my address book to warn them, because then it’ll be like going through it all again! But please do spread the word to anyone you know is in my address book, if you should happen to be in contact.

Grumpily,

Sharon

Kvelling: I Can Haz Service Dog!

I’m writing a short post because I have a lot of other stuff I need to do before my brain shuts down for the day. (Yeah, I’ve been awake two hours, and already I’m at low brain. Oh well.)

This is a celebratory post!

I can see my way forward with Barnum as my best service dog yet! He now can open my bedroom door on cue (with much enthusiasm) and the refrigerator door (with less enthusiasm), neatly retrieve most things I point to, and is well on his way to pulling shut (much harder than nudging shut) my bedroom door and bathroom door — two very important skills for me — and going to a named person for help after opening the door to the room we are in. I also, so far, am managing to prevent him from realizing that he has the power to open doors for his own means; so far I’m making it worth his while to only do it on cue.

Yes, we still have a long way to go before all established skills are really solid, and we have a buttload of obedience and public access to work, and various service skills he has not been introduced to. But we are now at the point where he is helping me in small ways, every day!

I give tremendous thanks and acknowledgement to Sue Ailsby and everyone on the Training Levels list who has provided tips and encouragement. You have made me a much, much better trainer and also helped me realize that I wanted a much higher standard of training for Barnum than I had for Gadget (let alone for Jersey).

Barnum just shut the bathroom door behind me for the first time, which is a tricky door because the latch sticks. He is now chomping on a well-earned knuckle bone. Meanwhile, I need to apply myself to an essay that is due soon.

I just wanted to share my joy and my thanks with everyone who has helped me along this journey. I do feel a tinge of sadness that Barnum is truly stepping into Gadget’s footsteps for the first time. I still miss my Gadgamonster, but I am so happy to have my Barnum, too.

My heart is full of love.

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

A Plagiarised Writer’s Response to #PIPA & #SOPA During the #Blackout

Cross-posted at Bed, Body & Beyond and Occupy at Home

If you go to Wikipedia today, you will find it blacked out — along with many other websites, blogs, twitter accounts, and more. However, on the Wiki page, along with the blackout is a way to contact your representative to tell them why you oppose PIPA/SOPA (or to learn more information about these bills, if you’re not familiar with them).

I encourage you to make your voice heard. Here is what I wrote to my representative and senators. Feel free to use whatever is relevant or useful to you:

As a writer who has had my work stolen — shadow companies were selling my articles under their own copyright on Amazon, as well as websites that have stolen my blog content and reprinted it without permission on advertisement-filled pages — I am very sympathetic to the aims and goals of SOPA and PIPA. In fact, multiple articles were stolen and sold on Amazon from a feminist newspaper I was in by this one company, and the editors and publishers of the magazine had tremendous difficulty getting Amazon to stop selling this stolen work.

I wonder how many of my other stories have, or will be, stolen — particularly because one of the genres I write in is erotica, and that seems to be an especially popular genre to steal and publish under another name. I work very hard on my stories. It’s no small feat, because I am severely disabled, and each time I write, it exhausts and sickens me. But I continue because it’s my passion and my joy and my job in this life.

I use the internet for everything — work, social interaction, news, research for work, research on my medical conditions and connections to others with my illnesses, personal study, and more — everything, really. I am bedbound due to chronic illness so it’s my connection to the world outside my bedroom. The idea of what PIPA and SOPA could mean for internet freedom and literacy is chilling to me. I am absolutely opposed to SOPA and PIPA, even with my personal experiences of internet piracy.

Megacompanies like Amazon need to be held accountable. They did their best to evade me, making their legal department all-but-unreachable, and then when I threatened them with legal action, they simply took down the pirated article without acknowledging my correspondence or compensating me for my stolen work. The big money-making machines, like Amazon, need to know that the DOJ has them in their sights, that authors need to be respected and protected.

But indiscriminate, sweeping legislation like SOPA or PIPA is not the answer. It throws the baby out with the bath water. It will not stop the internet megacorporations from their sloppy, unethical (and lucrative) practice of ignoring stolen work, but it will seriously damage the free exchange of ideas and information that is the life’s blood of the internet. The people of the internet are united in our opposition to SOPA and PIPA. I ask you to listen to your constituents, not corporate interests.

Thank you for your time, for reading, for listening, for following the will of the people.

P.S. If you have tried to email your representative or senator and gotten an error message where their website is supposed to be, that’s because so many people have registered their opposition to SOPA/PIPA that we’ve crashed their sites! Keep it up! You can still contact them on their Facebook pages or via Twitter.

Waspish Wednesday: The Obstacle to Training My Service Dog

A Despair, Inc., Demotivator

[To enlarge image, click here.]

The theme for this month’s Assistance Dog Blog Carnival is “Obstacles.” Lately it’s become very clear what my biggest obstacle is in training Barnum: me. Or, to be kinder and more accurate, my panoply of disabilities and their attendant symptoms.

While searching for inspiration to create a catchy title for this post,I  googled famous quotes on obstacles. I ended up at the proverbia.net Obstacles page. Here are two representative quotations:

Obstacles are like wild animals. They are cowards but they will bluff you if they can. If they see you are afraid of them… they are liable to spring upon you; but if you look them squarely in the eye, they will slink out of sight. ~Orison Swett Marden, American author and founder of Success magazine

Stand up to your obstacles and do something about them. You will find that they haven’t half the strength you think they have. ~Norman Vincent Peale, American preacher and author of The Power of Positive Thinking

What I noticed as I read through the quotes (aside from the fact that, except for unknown authors, these were all said by successful white men) is that the underlying message to all of them is this: Obstacles aren’t real. What you think is an obstacle is actually your personality defect. Get some perspective, little missy! Ditch the bad attitude and thinking B-I-G! If you fail, it’s because you didn’t follow the dream recklessly/doggedly enough, and it’s your own damn fault.

Uplifting.

Although most of these quotes are from a century ago or more, the ideas they espouse are the same victim-blaming, magical-thinking-induced ideologies that I and every other person in the US (and most other countries) are relentlessly subject to today. (If you need some convincing, please read Barbara Ehrenreich’s excellent book, Bright Sided: How Positive Thinking Is Undermining America. She lays it all out much better than I ever could.)

Many of us with disabilities or serious illnesses get told by family, friends, strangers, even doctors how positive thinking, and mind-over-matter, and mind/body connection, and blah blah blah is going to cure us. How if we think positive! And act cheerful! And smile! And be good little poster kids and supercrips and Brave, Inspirational, Role-Models (because therebutforthegraceofgodgoyou), we can overcome every obstacle! After all, isn’t that what the American dream is all about? Isn’t that what all the commercials tell us — about limitless growth, wealth, expansion, progress?…

In fact, this quote was my favorite of the bunch at the Proverbia.net site because it is just so brutally honest in its social Darwinism:

The block of granite which was an obstacle in the pathway of the weak becomes a stepping-stone in the pathway of the strong. ~Thomas Carlyle, British historian and essayist

That’s the truth of it: If you’re “weak,” too bad for you. If you’re “strong,” you get all the cookies. (And by cookies, I mean, money, security, respect, freedom, independence, choices, opportunities, etc. In a nutshell, privilege.) Basically, “weak” can just be a stand-in for whatever misfortune or trait a person might have which puts them on the margin. Of course, “weak” can also literally mean “weak,” and that’s a reality for some of us, too.

My biggest obstacles are not imaginary. They are not any sort of personal failing on my part or Barnum’s to be determined, smart, dedicated, hard-working, or creative enough. Because, in all honesty (but not modesty), I have all those traits. And they’re not enough. My severe pain and mondo-weirdo sleep disorders and exhaustion and inability to think clearly and inability to drive and inability to leave the house and inability to leave my bed and struggles to walk, talk, bathe, etc., all affect my training with Barnum in every possible way.

It is so damn frustrating! I want a trained SD desperately. It’s true that I am training him to a higher standard — in terms of both the solidity and number of skills he’s learning — than I used with Gadget or Jersey. Nonetheless, I’m also a better trainer, and we’ve been working longer than I’ve ever worked to get a SD completely trained. I don’t want to just keep training forever! I want to spend time with Barnum working, playing, getting out and about, having fun, being free and independent. I want this so bad! And lately it has become so starkly apparent that the reason we are so behind in so many areas is not him; it’s me.

When he started rounding the corner to two year’s old, a lot of dog maturity suddenly clicked into place. He has more energy. He catches on to ideas much faster. (I wrote recently about how we’re having more “light bulb moments.“) He’s more enthusiastic and confident. He wants to train. Indeed, he wants to interact with me all the freaking time! He’s insatiable! He’s turned into a training machine. This miracle I’d been hoping for of a dog who really wants to work, who chooses to be a service dog, is coming to pass. And much too much of the time, I’m so damn tired, I just want him to leave me be. I want peace and quiet and rest.

And I also want so much to work, work, work him. Lately, when we train, the clicker magic is there. He has recently — within the last three weeks — either learned the beginnings of or dramatically improved aspects of the following behaviors:

• Opening the refrigerator
• Opening my bedroom door (almost a completed behavior and on cue) and opening the bathroom doors (understands the cue but hasn’t figured out how to work the doors yet)
• Pulling my bedroom door shut from the outside (which is a completely different set of behaviors than shutting it from the inside)
• Carrying an item in his mouth from me in bed to a PCA in the hall
• Standing on a table to be groomed
• Holding still for tooth brushing
• Going into crate as a default when I start eating a meal (not 100 percent yet, but more often than not)
• Nose-targeting my feet (which will later be shaped into pulling off my socks and helping me move my legs when I can’t do it on my own)
• Generalizing the light switch UP skill
• Learning the light switch DOWN skill
• Going to find a named person to let them know I need help
• Retrieving novel objects from the floor
• Sitting on a table for grooming
• Holding his head and mouth still (no chewing or licking) for tooth brushing
• plus doing ongoing work on go-to-mat, down-stay, sit-stay, zen/leave it/self-control, come, crate, quiet, separation anxiety, and other things I’m forgetting.

All of which is probably leading you to think, “Damn! They’re doing great! Why is she complaining? Clearly they are overcoming obstacles, otherwise they wouldn’t be showing all this progress, right?”

Yes and no. Yes, we’re making progress. Nobody is more aware of that or more excited about it than I am — believe me! I’ve waited a long time to see this. There was a time I thought we were hopeless! I’ve tweeted and posted on our Facebook page, and on the Training Levels list, about how Barnum has really started to help me with some important skills, especially when I’m very sick. This is terribly exciting, and there have been a time or two I almost wept with gratitude and joy that we have achieved this place. I also tend to shower him with praise, hugs, and kisses when these events take place.

What I’ve noticed the most, when I actually need help, and I ask him to do that thing, not just as a training exercise, but because it would really be damn useful, and he does it, it’s a totally different world we are entering. It’s the world of partnership, of a new level of communication, of moving from mommy/baby or teacher/student to something more like, well, partners. It’s really the word that sums it up best, because it’s appropriate in every nuance and meaning of the word — equals, mutual supports, working team members, family, beloved, etc.

But. . . .

We are not there yet. Most of the skills above are still in their youth, if not their infancy, in some cases. Most of the time I’m still putting the energy out, out, out, and only sometimes is it coming back. By his second birthday, I really had expected him to be working full-time, with just polishing of a few skills. Instead, only a few of his skills are in working order, most of them are under construction, and a few haven’t even been introduced.

So, yes, the reason we have achieved what we have, despite the immense obstacle of my illness, is due to our determination, smarts, dedication, hard work, and creativity. We certainly wouldn’t have gotten here without all that. But the fact remains that we still have so very far to go because the obstacle of my illness is real and cannot be “overcome” as in the endemic supercrip trope. We can only chip away at this block of granite a little bit at a time, sometimes with a pick-axe, and a chunk comes tumbling down, but mostly with a dull pocket knife, or a bent spoon, or sometimes just a toothpick or a thousand drops of water over the course of years that hollow out a smooth indentation where I rest.

- Sharon, the muse of Gadget, and Barnum, eager SDiT

Insomnia and Creativity and Neuroatypy

I haven’t slept since yesterday afternoon. Before that, I slept for two hours, from 2:00 AM to 4:00 AM. Before that, I slept from . . . well, I can’t remember. I can’t keep track of which days are which anymore, even worse than normal, because if I don’t sleep on Sunday until 6:00 AM Monday, does that count for Sunday’s sleep or Monday’s?

I’ve had a range of sleep disorders since I first was chemically injured in 1995. In fact, when I was falling ill, I remember having terrible nightmares, every night, and I didn’t know why. Then, as the CFIDS/ME and MCS got worse, I slept less and less until I was sleeping literally no hours per night. Thank god, a doctor gave me Elavil and that worked.

Over time, I had to raise the dose, but it helped a lot with sleep and with body pain, as I discovered the few times I had to go off it. And I’ve added other things that help a little. And I’ve tried everything that’s been available for sleep and most of them, I have one of two reactions: 1.  No reaction. As if I’ve taken a sip of water. I can take twice the normal dose and feel nothing. I’m wide awake!  2. A paradoxical reaction. This is when you take, for example, Valium, and your body’s response is shaking, sweating, anxiety, racing thoughts, pounding heart. Well, you get the picture. Not sleep-inducing.

I’ve been on a vampire-ish schedule for many years. It’s common in people with CFIDS/ME — we don’t “do” morning. But after getting chronic Lyme disease and coinfections, it’s gotten worse and worse. Lately, my body seems to have written a contract which I don’t remember signing that if I fall asleep before 5:00 AM, I will sleep, at most two or three hours, and then I will be awake for another twenty-two or so.

Sadly, the less sleep I get, the more pain I’m in. The more pain I’m in, the more exhausted. The more exhausted, the more shaky, mobility-impaired, voice-impaired I am. And all this isn’t even touching on the cognitive impairment: the brain damage from the carbon monoxide poisoning. The brain and neurological damage from Lyme and babesia and Bartonella. These days, I can’t read. Not only can I not read books, I can’t even read long emails. I can’t remember words I used to know. I keep wanting — desperately, desperately wanting — to blog about how torturous it is to be a writer who is brain injured and can’t read and can’t even explain why I can’t read. Can’t explain why my cognitive impairment has gotten so much worse. For a year, I’ve started draft posts here and at my writing blog, about my cognitive impairment and how it affects my writing, and I never finish them.

And what makes the level of illness and dysfunction and cognitive impairment I’ve been dealing with even worse is that I now have the desire to write again, to be creative again, which Lyme stole from me for a few  years, but I can’t access my creativity. That spark. The place where leaps happen in poetry or fiction. In world-building. In taking risks.

Instead, I follow this bludgeoning, insistent mundanity, of persuasive arguments about disability rights or descriptions of training regimes — essentially, “What I did (with Barnum) today.” And I wonder where the other part of me has gone, and if it will come back.

One thing I have noticed: Often, when I do my best writing — my most risk-taking, creative writing — is when I am really sick, and often in the middle of the night. But it’s a certain kind of sick. Like, a certain migraine state, if I can write through it, can produce good work. A certain level of disconnection from my body required by, or a result of, pain and exhaustion and cognitive strangeness.

These are usually short pieces, because I’m too sick to write anything long, and if I do attempt something long and don’t finish it, when I go back to work on it in my “normal state,” I can’t recapture the spark. It just sits there, unfinished. I have possibly hundreds of such pieces.

But, if I’m too sick — if I’m really, really sick — I can’t write at all, and I don’t want to write at all. I have no creativity. I don’t care about anything except the amount of pain I’m in and just trying to do as little as possible — not to breathe or swallow or shift in bed — to get through it. I have no leaping thoughts. I have no desire.

Then, a couple of weeks ago, I read a great article in Scientific American called The Unleashed Mind: Why Creative People Are Eccentric. I’ve never considered myself exceptionally creative nor exceptionally eccentric. I think I’d score above average on creativity and possibly a bit on eccentricity, but nothing like the examples they gave. However, most of the focus of their research was that the connection between creativity and eccentricity is people who tend not to filter out a lot of sensory stimuli and other information that we mostly consider “background noise.”

To me, this fit with the state I’m in sometimes when I’m sick enough — especially when something neurological is going on, like a migraine, which is believed to be a form of slow seizure, that that shifts my thinking. And it fits why I haven’t been having these spells of creativity — because now, when I’m sick, I’m too sick to write. And my brain is too impaired most of the time to have that plasticity to leap when there are opportunities. It’s filtering out too much. Not just what normal brains filter out, but additional stuff — words, memories, concepts.

And then, the bout of really extensive insomnia. It’s coming up on 24 hours since I’ve slept. And I entered two flash fiction contests today. I haven’t done any creative writing for many months, and now, when I literally almost fell over, because my legs gave out when I was transferring from chair to bed, because my muscles are so shaky from exhaustion, I could slip into that place where I could let go, and my thoughts took me places.

Are they GOOD places? Is the writing interesting or worthwhile or actually creative? I have no idea. I’m too exhausted to have any clue. But I did it, and that’s something. And it will probably have to be something I remember for a good, long while, because when I crash at the bottom of this crash, it’s going to be a severe, severe crash. I can feel it in the way  my body is locking up. So I have a certain desperation to get this post out before it does.

If you want to read what I wrote today, I entered the #TuesdayTales contest at GlitterWord, over which you have no control of the outcome. And I entered my original and favorite, #FiveMinuteFiction — and I’m a finalist! So, you can actually vote for me, if you want to.

And now I will go to sleep. I don’t know when you’ll hear from me again, but maybe there’ll be a leap somewhere between here and there.

- Sharon, the muse of Gadget, and Barnum, SDiT extraordinaire

The Power of “Sit” to Open — and Shut — Doors!

It seems like every day now, Barnum is making progress in one area and showing holes in training (or backsliding) in another. It’s a challenge for me to mentally keep track of what to focus on, as well as to physically put in the work involved. It’s as if Barnum read the bouvier des Flandres handbook and learned that at two years of age, he becomes more an adult, and less a puppy, and has started — for better and for worse — to grow into those traits for which the breed is known.

On one hand, he is learning faster, is thinking more independently, has more energy and drive to work. These are some of my favorite traits of the breed, and why I gravitated toward bouviers and have continued to stick with them as service dogs. Unfortunately, I have not been well enough to provide as much physical and mental stimulation as he needs. I’ve also felt frustrated that I cannot capitalize on his new-found drive and enthusiasm to train as much as I’d like.

On the other hand, when I am able to work him, we can work long sessions, and varied skills, and he is very much “in the game,” to quote Sue Ailsby (aka Sue Eh?). Not only is he in the game, but his “little grey cells”* seem to have multiplied or plumped up or something, so that the “light bulb moments” are coming more often. As a trainer, and especially as a partner-trainer of a successor SDiT slogging a long, hard road, these light bulb moments are what I live for! I feel indescribably elated when they occur.

We have had some literal light bulb moments, such as Barnum learning to nudge the light switch down (in addition to up) and beginning to learn to generalize this skill to other locations than the one with which he is most familiar (my bathroom). However, the most exciting new skills are our advances in opening and shutting doors. Barnum has been shutting my bathroom and bedroom door for quite some time. However, there was a period when we lost ground on the bedroom door because somehow — I still don’t know how it happened — the door bopped him in the butt right as I gave the cue to shut the door, and he developed a fear of shutting my bedroom door and particularly of the cue. (The cue was poisoned.)

We worked our way past that by removing obstacles, literally. I’d move my powerchair, oxygen tank, trash can, and other things away from the door during training sessions so he could regain his confidence. Then he was very confident and enthusiastic shutting the door if I was in my chair, but not in my bed. (The butt-bopping incident occurred when I was in bed.) Over the last several weeks, I’ve been reshaping him to shut the door when I’m in bed, and he is now about 80 to 90 percent solid on that.

Meanwhile, I have done occasional shaping sessions with him to teach him to grab the door pull on my bedroom door and pull it down and back, which — when done just right — opens the door.

My bathroom door pull and two cupboard pulls.

I have not been in a hurry to train this skill because, even though it’s an extremely useful skill for me, I was waiting on two things:

1. I wanted Barnum to have a better grasp (no pun intended) on “take” and “hold,” which he was learning from our retrieve training. Cueing him to “take” the pull would make generalizing the skill to other doors easier — especially when he comes up against doors where the handle must be pulled down and then pushed in, a much more challenging combination than pull down and back.
2. I wanted to have some sort of control in place for when Barnum realized he had The Power to Open Doors.

Now, I have been pretty frank in this blog about Barnum not being the smartest dog on the planet. However, he’s no dummy. If you teach a dog to open a door on their own, at some point, if there is a reason for them to want to be on the other side of that door, all but the meekest or slowest of pups is going to realize that they can let themselves out.** Gadget let himself out of the house a couple of times before I caught him in the act and communicated that that was not how things were to be done.

The first time that Barnum did open my bedroom door in a training session, he didn’t realize he’d opened it. He was turned away from the door, snorking up his treats. By the time he turned back to the door to discover it was ever-so-slowly swinging open, he was like, “Huh! The door’s open. Cool,” and he wandered out to see what was happening elsewhere in the house. During the same session, he opened the door again, and the same thing happened. I ended the session, deciding that I would have to think of a way to condition him to believe that whenever he opened that door, the really Excellent Stuff for Dogs was taking place inside my room.

We had plenty else to work on, so I just let the issue float down to the bottom of my consciousness to collect dust — gold dust, as it has turned out, I think. Apparently, after a month of severely poor functioning for me, including cognitive function, my little grey cells have come to life, too!

Along with our more advanced skills, which Barnum and I either had learned from doing Sue’s Original Levels or from service skill training I’d figured out on my own with Gadget, Barnum and I have been very slowly working our way through Sue’s new book, Training Levels: Steps to Success. The idea is for us to fill in any gaps in our foundation skills that I may not be aware of (and some that I am) and then progress to the higher levels that we have not yet achieved.

Well, it just so happens that one of the steps we have been working on is Sit, Level 1, Step 4, which is “The dog sits by an open door.” The idea is that the dog learns to sit any time before he goes through a door — the open door becomes a sit cue, and thus you have a default sit for any open doors. This can later help prevent dogs rushing outdoors. Barnum actually has excellent door manners, but there is always something to be learned from any clicker training exercise (especially a Sue Eh?) exercise, so we have been doing our door sits.

One day I was thinking about how I could get Barnum to stay in the room every time he opened the door, and it occurred to me that I could make the default behavior after opening a door to sit and look at me! Eureka! And we were already halfway there because Barnum was already learning to sit at open doors!

So, I was ready with this plan in place, but I hadn’t counted on how excited and enthusiastic Barnum would become about opening doors. Once he really understood the purpose of all this tugging on the strap, it was thrilling to him to open the door and win a click and treat, and then to run behind the door and slam it shut — and win another click and treat! Since I was now teaching him the cue for opening the door, which requires repetition — and since he was so excited it was hard to interrupt him — I let him carry on with opening and shutting the door in true bouvier style. (Very! Loud!!)

“At least,” I thought, “if he is obsessed with shutting the door after opening it, he is not running out the open door. So, we can bring control into the equation once he’s learned the cues a bit better.”

And that’s what we’ve done. I used a helper to toss treats because that allowed me to focus on timing my clicks and not exhaust myself with throwing. However, the bonus of this was that Barnum naturally oriented to the helper to get his reward after opening the door. Once I was able to reliably cue him to open the door, I took over the treats and he had to reorient himself to look at me. From there, I used whatever I had in my arsenal (zen, “Watch me,” and/or “sit”) to get him to face me, sit, and wait for his next cue (with clicks and treats for every behavior he completed, until I could go for twofers and use the second cue in the chain as a reinforcer for the previous behavior).

Thus, what we ended up with (when things went perfectly) was

• Sharon (lying in bed) cues Barnum to open door;
• Barnum opens door;
• Barnum whirls toward Sharon;
• Barnum sits and awaits further instructions;
• Sharon cues Barnum to close door
• Barnum closes door, turns to Sharon and sits again.

Then, it got even more exciting than that. Here’s a hint: We added elements from the Come Game and Retrieve! But I’ll leave that for another post when I might even have video of the behavior chain.

- Sharon, the muse of Gadget, and Barnum, SDiT-well-on-his-way!

*Bouviers des Flandres are a Dutch/Belgian breed, so it seems appropriate to quote Hercule Poirot here, a brainy Belgian (though a fictional one).

**Interestingly, I know some people who worry about teaching their dog to open the refrigerator. This has not (yet) been a concern of mine. No matter how hungry Gadget was, it never occurred to him to want to open the fridge, and I doubt very much that Barnum will do it either. I think the thrill of freedom — the run of the house or the outdoors — and the lure of attention and society while I am boringly asleep is much more of an enticement to my bouvs than food. Also, so far Barnum is still startled any time he opens the refrigerator door. He finds the movement of the door aversive, so I am shaping that skill with very high rate of reinforcement and a very low-key emotional environment. Hopefully he will eventually get past this startle response, but for now, I don’t see him trotting off happily to open the fridge on his own.

Assistance Dog Blog Carnival #6 Seeking Entries!

It’s ADBC time again, folks! (If you’re not familiar with the Assistance Dog Blog Carnival, you can read all about it here.)

The host for this edition is Cait at Dogstar Academy. The theme she’s chosen is “Obstacles,” and she has some nifty thoughts to ponder on the topic.

There should be no obstacles to a great carnival!

I didn’t see a deadline in her call for entries, but she indicates she plans to publish the carnival on January 29, so assume you have to get your posts to her before that date, at the very least. (If she posts an update, I’ll modify this post to give the deadline.)

Check out her call for submissions!

And please share, tweet, and generally spread the word about this carnival so that anyone who might like to participate has time. For those who are planning on posting, may you find no obstacles in your path.

- Sharon, the muse of Gadget, and Barnum, SDiT

Barnum’s Accomplishments at Two Year’s Old

Not only is this the beginning of another calendar year, but because Barnum was born on December 30, this is also the beginning of a new year of his life!

One of these tiny, damp wiggling one-pound puppies will be my Barnum!

Then, he became my fuzzy little bundle of joy. (And a pee and poo output machine.)

Looking lovingly into each other's eyes on his first day home.

And a bit of a mouthy monster. . . .

Aw, isn't he, um, adorably vicious?

Well, I’m sure he’ll outgrow it. . . .

Sure, it's all fun until someone gets bitten in the arm. Then it's only fun for Barnum, not so fun for the person who belongs to the arm.

But no, he doesn’t do that anymore. Now he is much more relaxed. In fact, he has become a Zen master. . . .

He knows they're there. But he has to strike a cute pose for the camera, too.

Not just liver treats, but pies, too. . . .

This is a piece of cake. I mean, pie.

And his “take” and “hold” skills are part of his zen mastery. . . .

That's a "hup," "take," "sit," and "stay," ladies and gentleman!

Furthermore, in the last couple of months, Barnum’s drive to train/work and be active has increased. This maturity has meant that his skills as a service dog are coming together! It has also meant that some of the natural bouvier des Flandres temperament is coming out in him, which I am less happy about. He is developing a habit of barking at strangers when he goes for walks, and barked his head off at a visitor for my birthday, which is extremely unlike him. He’s usually very quiet. So, socialization efforts need to be stepped up.

It’s a day for celebration, and having been extremely ill for much of the last two weeks, when he does help me, I really notice the difference! Sure, I could post about all the things we still need lots of work on, but not today. Today, we focus on feeling good!

Here are some of our accomplishments of the past year:

• Reliably shuts kitchen and bathroom cupboards, drawers, and refrigerator door
• Reliably braces for transferring (used mostly to/from chair/toilet)
• Most of a retrieve (it still needs work, but the basic foundation is there)
• Shuts my bedroom door on cue reliably and my bathroom door extremely reliably
• Turns on bathroom light on cue reliably
• Alerts to infusion pump alarm reliably and to some kitchen timers reliably (others are more spotty)
• Has learned how to open my bedroom door; now we’re establishing the cue
• Has learned the motion of turning lights off, but hasn’t yet figured out how to apply it when he has to jump up
• Has learned to open fridge door (but not the cue, and not far enough open yet)
• Knows the names of all my PCAs and Betsy
• Has basics down of carrying an object from a PCA or Betsy to me or vice-versa
• Is partway to knowing the word, “Slipper”
• Urinates on cue; pooping not yet entirely on cue
• Very solid sit and leave it and crate
• Good progress on mat, down, come, stay, stand, back-up, side, behind
• Excellent loose-leash walk with people who pay attention to the leash (for people who tighten the leash, he responds in kind)
• Very good car (van) manners
• Excellent progress on bathing manners (will get in tub on cue and even sometimes sit or down in water on cue; will not exit tub until cued)

Well, I’m sure I’ve forgotten stuff, but I have a migraine, and I’m exhausted, so I just wanted to pound out this celebratory post.

He is the love of my (and Betsy’s) life. Family, friends, and PCAs love him. He is a dear, sweet, affectionate boy, very sensitive to my moods, but with a rock-solid temperament — almost nothing phases him.

We are well on our way to finishing his skills with doors, light switches, and basic retrieve, and then moving on to more complex retrieves (items by name) and to solidifying his public access skills and other basic obedience, manners, and positioning. From there, we will move to new skills, such as helping pull off socks and other clothing, bed covers, and more!

I think 2012 will be a great year for Team Barnum! Here’s hoping it’s a great one for you, too!

- Sharon, the muse of Gadget, and Barnum, SDiT