Have You Seen This Ball?

I am so very grouchy today. I have been overdoing on every level: physical, cognitive, emotional, and I’m paying the price.

I’m on day two of a migraine I can’t seem to shake, day and night, which is not doing wonders for my sleep. Barnum has hair in his ears from the haircut we gave him yesterday, and I have been trying to decide whether (and what) to use as a non-commercial ear flush, since all the commercial ones are scented. He hates having anything in his ears, so that will be fun, if I decide to do it.

I’m also having writer’s block — which I never have — on a story that I’ve been given an extension on by the editor. So, I really feel indebted to her that I have to finish it. Yet, it is floundering, and I fear that whatever I send her will not even be something she can use. And I’m still struggling to finish my post for the ADBC.

Of course, there’s also the never-ending pchair saga. I haven’t made progress on my letter of demand because my brain has been too occupied with other things, or I’ve been too sick (from overdoing). Meanwhile, Betsy and I have been making Herculean efforts to get my old Jet running again, and that’s been a bumpy ride, which has not made for happiness on the home-front, either.

Still, there is progress there, at least.A very nice guy from my town came over today to help me figure out why we can’t get the Jet working, even though we had the batteries installed correctly, and they are new. It took a lot of detective work, but we have figured out there is a wiring issue with one of the wheel motors. It’s not safe to use yet, since it could die at any moment, but at least now I can charge it and use it around the house to keep the batteries in shape.

Barnum was a complete flake when my neighbor was here working on the chair with me: getting in the way, stealing treats, totally couldn’t figure out how to do “go to mat,” and then when he did, couldn’t maintain it. His zen was abysmal, particularly in the realm of crotch sniffing — which he only does with strange men, which makes it hard to practice! — and is not an appealing habit for a service dog! Augh! There are always 8 million additional skills he needs “work” on!

Lest I go into a complete spiral of despair and frustration, let me remind myself of skills he really knows and is reliable on:

• Shutting doors. (He actually went and shut a closet door while my neighbor was here, and he’s only ever had one session on that door before, of only two or three repetitions. I was impressed.)
• Shutting drawers.
• Shutting cabinets.
• Brace. I had to get up and down from the floor several times, and he really is rock-solid on this one. It really helps. I have to start calling him over more for help with that when I just need a moment of balance at other times, too.
• Stand.

That’s it! AUGH! He still does not even have sit and down under stimulus control! He confuses them, gets nervous, cues off of environmental or body cues, etc.

So, here’s a new problem: Barnum’s favorite ball is dead. It was the only toy he would play with anymore, so this is a problem. Play is important.

Many years ago, Deb, my neighbor, gave Jersey and Gadget each a ball for Hanukkah. Jersey never had any interest in hers. Gadget wasn’t interested in his except for water retrieve, which became very useful as part of him helping me to swim.

We had a blue one and a green one. The blue one died eventually (a Lab chomped it to death during a play date), but the green one was Barnum’s most, most, most favorite toy. It’s a good size for his mouth (bigger than a tennis ball, about the size of a large naval orange or a small grapefruit), and soft enough to squeeze but still tough enough to have lasted. Most importantly, it squeals incredibly loudly. Or, it used to. That’s what he loved so much about it. It had a very loud, high- and multi-pitched, piercing squeal. If you didn’t know what it was when  you first heard it, you might be concerned that a small animal or baby was being killed, but Barnum’s Mr. Prey drive, so he loved that.

This was not an ordinary squeaker, at all. The squeaker was part of the ball, part of the construction, and “squeaker” is really a misnomer. It was a squealer.

Another important factor was that even when these balls got tooth holes in them, they still squeaked (although, if  you used them at the beach, they became waterlogged). Apparently, however, they are not made to withstand being accidentally run over by a powerchair.

Now, Barnum will run and pick the ball up, attempt to squeak it, and then drop it in disappointment. It’s a very sad sight to behold.

Thus, I am asking you, my internet dog community: Have You Seen This Ball?

The Best Dog Toy in the World

I haven’t seen them in any dog catalog I have. I’m really hoping I can replace it. If I can find several, I will buy them all!

Please, if you see this ball anywhere — online, in a catalog, at a pet supply store, at a garage sale — buy it and send it to me! I will reimburse you! Or tell me about it so I can buy it.

Just imagine Barnum quoting Shalom Aleichem, “So, if you had a bad week, why should I suffer?” Poor dog wants his ball.

– Sharon (fully trained grouch), Gadget  (sorely missed on days like these), and Barnum, SDiT and bored pup

Silly Saturday (Edited)

My replacement battery came today. Things got moved around between now and a week ago, and we can’t figure out how the battery wiring harnesses attach to the battery. So, I am stuck waiting around while I get advice from more knowledgable people. (Yes, I did read the manual. The diagrams suggest one thing, the written instructions another.)

[NOTE: This post has been edited. I originally had a pun up here, using a photo, and I got some feedback that it could be triggering or in poor taste or just generally making light of an issue that is quite serious. So, I have taken down the joke. You can read the discussion about it in the comments. I asked Betsy about it, as well, and she said something like, “I wouldn’t necessarily say offensive, but maybe poor taste because it’s a serious issue. But it’s also so very you (your sense of humor).” So, I thought that summed things up pretty well.

I regret any pain my joke might have caused any of my readers. I will try to be more mindful in the future.

Peace,

Sharon]

– Sharon (giddy from hunger and lack of sleep), the muse of Gadget (I don’t get it), and Barnum, SDiT (I went to the pond today! Wooha!)

Flashback: Of Grief and Relief

I originally wrote this post on January 2, 2010. It’s one of several unpublished posts I wrote in the wake of Gadget’s death. I keep finding these drafts that are basically finished, but for some reason, I didn’t think they were complete at the time. My thinking was so fuzzy back then, I’m not sure what I thought these posts needed.

In this case, the original title, “Admission of Guilt,” suggests a pretty clear reason why I hesitated to post it. I’m glad that I can now grieve Gadget without feeling guilty about the complex feelings I experienced during his last days.

– SW

When the End of the End Doesn’t End

Gadget’s final week was an extension of the previous six months, and the dreams seem to be an extension of what I lived in those end days.

For about four months I fought with my brain, my body, my heart, and my bank account to defeat his cancer. I researched. I cooked. I researched more. I took him for chemotherapy, acupuncture, chiropractic, and Chinese herbs. I pilled him constantly and myself just enough to keep my exhaustion and pain sufficiently at bay to always take him for a walk, to always go with him to chemo, to always make sure he got the right supplements and medications with the right meals. Those were the days of hope, when I thought we would have at least a year, possibly two, maybe three or more.

Then, he took a turn for the worse, and I realized he probably was dying. Next were the weeks it was clear to me he was dying, but not to him. Finally, in the last week or two, he was actively dying, which was like all the months before, but brutally amplified.

Everything was more. More stress and anxiety. More effort to ensure each meal was delicious and totally digestible. More pinnacles of hope and plummets into despair. More pills and monitoring symptoms and needle sticks — all requiring more vigilance around and around and around the clock. More cleaning up messes that smelled of his body shutting down. More desperation to make him as happy as I could with trips to the pond, walks, doggy get-togethers, and to soak up as much joy as I could, myself, in his still being alive because every time we had fun or peace, I knew, “This might be our last time. . . Or this one. . . . Or this one. . . .”

I couldn’t shed months of habits overnight, just because there was no longer any purpose to them.

The first morning after Gadget’s death, I rolled out of bed, adrenaline banging through me, and began checking his status before I even realized he wasn’t there. I was ready: Had I heard gasping? Did I smell vomit? Was it time for pills or fluids?

What I was not ready for each morning was the nothing. Not only wasn’t he on his bed, he wasn’t lying in a cool spot next to the window or on the bathroom tile. He hadn’t wandered off in search of one of my personal care assistants to demand food and attention (not that much demanding had ever been involved — more like just showing up!). But, my PCAs hadn’t arrived yet because I should still have been asleep. There was nobody there. So there was nothing to be done. And I didn’t know what to do with that at all, because for six months, there was always more to do. More to try, more than I could do, more that made no difference in the end.

After taking in the nothing, I’d cry and go back to sleep.

Sleep was very big on my agenda the first few days after Gadget died because, in addition to the insomnia I have as a symptom of my illness, for the previous months, I woke up constantly to care for Gadget. During the days, I spent all my energy on two things: Gadget’s survival, and my survival (in that order). From the moment I woke to the moment I’d literally pass out from exhaustion, I was in the survival struggle.

In fact, for the first 48 hours after Gadget died, I mostly felt relief. I slept. I finally didn’t have to manage anything. I didn’t have to struggle against and fear the worst anymore because the worst had already happened.

Near the end, we both grabbed sleep whenever we could.

I’m fortunate to be able to admit this. What’s given me the courage is hearing it from other caretakers of a loved one with a long, terminal illness. It’s actually pretty common. However, it’s not an admission everyone wants to hear.

A year ago, I didn’t want to hear it from someone else. On January 6, 2008, Norm, one of my best friends, died after two agonizing years of illness. He often said to me, especially near the end, that he wanted it to be over, that he sometimes felt like it would be a relief to die. This was hard to hear, but I was sympathetic. This was because, along with understanding how it feels to be mired in pain and illness, I was keeping a promise I’d made to him a long time before, though he didn’t know it.

When Norm got sick, I committed to listening to and supporting whatever he felt. My goal was to be unconditionally loving and nonjudgemental. I think it’s the only time in my life I’ve succeeded at that.

Still, I didn’t want him to die. So, when he did, I was shocked and grief-stricken. It was a pure loss, which is what animal bereavement experts say is usually the case when a companion animal dies. They say that our relationships with our animals are usually so entirely positive, without the resentments, grievances, and other negative complications of our human relationships, that the loss is often more painful than a person’s death. I have recently heard from others whose dogs died of cancer that their grief and suffering is worse than when they’d lost a parent, a sibling, or even a child.

Norm was a dog person. He also shared my gallows sense of humor. At his memorial, I said that Norm would appreciate knowing that, to me, his death was as upsetting as if he was a dog.

This was not true for his wife, who also is disabled and with whom I was also friends (though not as close). His death was a terrible loss and a tragedy for both of us, but she had spent two years of physical and emotional agony taking care of him. I was protected by the distance of the phone line. His death for me was pure sadness. For her, it was also a deliverance: a release from the horrors of watching him suffer brutally for so long, as well as a chance to take care of herself again and to regain some of the life she’d lost before he got sick. I couldn’t stand hearing this from her. Her grief was complicated, and mine was straightforward. I didn’t want there to be an “upside” to my friend’s death.

Since Gadget’s death, I have a lot more empathy for what my friend was feeling last year. I have been met with silence, confusion, and outright denials when I mention the part clemency has played in Gadget’s death.

When he was dying, I went to an online anticipatory grief support group. When I admitted, with some guilt, “Part of me just wants it to be over.”

The host said, “That’s because you don’t want to see him suffer. It’s a completely unselfish feeling.”

I said, no, it wasn’t entirely unselfish. Seeing him suffer was horrible, and that was certainly part of it. But, I said, I was suffering too. I was exhausted, a physical and emotional wreck. I’d dug deeply into savings that I live on. The toll was enormous and seemingly endless. I wanted it to be over for me, too. I didn’t want him to be dead — not truly dead — but I also wanted it to be over.

The host continued to maintain that my only thoughts were of Gadget’s needs. She refused to hear the part of me that was saying, “I can’t take this anymore.” I didn’t mention it again.

Of course, when it was “over” — what we think of as over, his body buried in the ground — it was not, is still not, remotely over. I got my two nights of sleep, but they were laced with nightmares for far longer. And the grief, in one form or another, goes on and on. I’ve been told that in some ways, it will never be over, a thought that is depressing, exhausting, and strangely comforting. I guess because it means Gadget will always be in my life, in some form, even when that’s only in grief. . . .

I reach out for him to feel where his fur should be. I look to the foot of the bed, where his head should be lolling over the side. I listen for his snore, rumbling over the white noise of the air filter. I glance instinctively to the door, the light switch, the pillow I’ve dropped on the floor, for him to shut the door, turn off the light, pass me the pillow.

At times, he feels beyond my mind’s reach.

For six months, I applied every life-affirming “treatment” I could. I didn’t just take him to chemotherapy every week, even when I could barely leave my bed the rest of the time. I didn’t only research and dispense herbs and supplements, create a special cancer-fighting diet tailored to his food allergies, consult a multitude of veterinarians and read multiple books on canine cancer. I took him on special walks — varied our routes, went to his favorite destinations (and pretty well killed my powerchair in the process). Even teaching him new service skills and relying more on his assistance felt like a blow against cancer, as if I was tethering him to life that much more tightly. How could such a necessary bond ever be broken?

More importantly, I tell myself that I still exist and matter. After more than eight years living as a “we,” a partner, an interdependent unit, an extension of another, I’ve become disembodied. The only thing that has ever been mine alone is writing. No matter how many people offer critique, proof or edit, type or transcribe, publish (or reject) a piece of writing, it is still a solitary act.

I was a writer before Gadget. After he entered my life, I often wrote to escape the demands of his training and exhausting exuberance. As the subject of some of my humor columns, I transformed scary, frustrating, or painful events with a wild young rescue into emotional release — and paychecks. Even when he curled up under my desk as I typed, the true connections happened in my mind. Writing has always been where I find myself, whether I want to or not.

– Sharon, the muse of Gadget, in the days before Barnum

Birding Thursday: Barred Owl (Audio Edition!)

I remember after I first moved to the country, in 1998, being awoken at dawn by an unearthly sound.

“My god!” I thought. “What the hell is that? And will it ever shut up so I can go back to sleep?”

The answers turned out to be

1. A pair of barred owls, calling back and forth to each other, and
2. No, they will keep you awake for hours.

Eventually I discerned, amongst the sometimes chimpanzee-like shrieking, a hooting suggestive of an owl, and I looked up their call in my bird books and discovered it was a pair (or more) of barred owls. Over time, I became used to them. Even though they still sometimes woke me up, I was able to go back to sleep, despite the screeching and calling and hooting.

People think the country is so peaceful. Yes, sometimes it is. And sometimes you are trying to help make a documentary in your driveway and a pileated woodpecker keeps hammering during what is supposed to be your deeply meaningful parting line. But that’s a story for another time. Rather, it’s two posts for the future: one on pileated woodpeckers, and one about participating in a video to educate the public about health care access for people with disabilities.

Back to barred owls!

So, I was familiar with their calls. In fact, about three years ago, we even had a barred owl living near our house. We saw her during the day, because barred owls are sometimes active during the day, as well as night. She’d be in a tree nearby, or sitting on the bird-feeder pole, just hanging out, presumably waiting for some rodents to come looking for the seed spilled on the ground. (Barred owls don’t eat other birds, according to my bird books. Yet, the song birds stayed away while she was around.) We called her “Hedwig.” We were very fond of her.

We didn’t see her after that year, but at night I often hear barred owls calling to each other when I take Barnum out to toilet. The calls seem to be coming from my neighbors’ yard across the street. Indeed, my neighbor recently sent me this photo, saying, “We’ve been seeing this pair all summer.”

(Yes, they are as big as they look. As you’ll read in the Audubon description of them, they are almost two feet tall, with a wing span close to four feet!)

Aren't they adorable?

For the description, I’ll turn to my Audubon guide: “Length, 21 inches. Wingspan, three-feet-eight inches. Dark brownish gray with black spots above; heavily striped underparts; dark bars on upper chest; facial disk gray, ringed in black. Eyes brown; no ear tufts.”

The description my Audubon guide gives of their calls is pathetically inadequate. Here are some calls (and also some images) of adult barred owls from a youtube video. (I’m not providing a transcript or closed captioning because it’s really not possible to get across the sound.)

Okay, so I’m used to that.

Then, several weeks ago, I started to hear a strange, repetitive, loud, annoying animal call at night, all night. I could mimic it when I heard it, but by the next morning, I’d forgotten how it sounded, and couldn’t reproduce it. Finally, I posted to my town’s list-serv, describing it as sounding sort of like a slide-whistle, or someone sucking in an incredibly deep, long breath until they were about to gasp. I said it was repeated all night.

Someone on the list suggested that it was the call of one or more baby barred owls. Someone else in town called me to play me a recording of a barred owl pup juvenile, and yes, ding! Ding! Ding! Ding! They win the prize! That’s what it was.

Apparently, the baby owls call very persistently whenever the parents fly off to hunt, to let them know, “Hey! I’m over here! And I’m hungry! . . . Hey! I’m over here! I’m hungry! . . . Hey! . . .”

You get the idea.

One night, recently, it occurred to me to take my camera outside when I took Barnum out to pee to try to get a recording of the call. It is below. There’s no video — you just see black. I was only trying to capture the sound.

I believe I made the young owl nervous, rumbling toward it on the ramp, so it only called four times in these 37 seconds, which is not as frequent as usual. Also, I know it doesn’t sound that loud  and annoying on this recording, but this is a pretty old, crappy camera, not an audio recording device. In real life, they are much more piercing! (Crank up the volume to listen to it.)

Now, if you ever hear these calls, you will know who you are enjoying . . . as you lie awake past dawn. (Because,  yes, they continue hooting and caterwauling past sunrise!)

– Sharon, the muse of Gadget (I never even noticed the owl calls), and Barnum (who doesn’t pay the owls much mind in real life, but when I played the youtube video one night, started barking in alarm!)

Waspish Wednesday: Now, with Real Wasps!

Betsy got stung by a wasp today as she was dealing with one of our four composting nightmares. As she was sitting on the floor with a bag of frozen peas on her ankle, she said, “You should write a Waspish Wednesday about this!”

After I thought about it I realized she was right, it is Wednesday! I have other topics I’ve been wanting to write on, not least my post for the Assistance Dog Blog Carnival, if I can get it done in time. Meanwhile, though, what have I been up to?

Powerchair hell, as usual. A few weeks ago, I asked the people who built my big purple chair if I could please exchange it for a new chair or just return it for a refund, inasmuch as it is a lemon. They responded that they would completely change all the wiring and the wheel motors.

I thought about it. I knew I didn’t want that, because they’d already rewired it, and I’m convinced the wheel motors are not the issue. But I was trying to decide if I wanted to ask for a new chair or just a refund. I looked up the Massachusetts wheelchair lemon law and discovered that it is up to me, the consumer, as to whether I want an exchange or a refund.

I wrote them, referred them to the law (which is online; most states have wheelchair lemon laws), and told them I wanted a refund. They responded by yelling at me a few times. I basically said, “Can’t we please just settle this? I’m not asking for reimbursement for mileage for the many long trips. I just want a refund. I’ll return the chair.” But no, I kept getting emails saying it was my fault for using it in mud, snow, and rain, which is mostly not true, and also beside the point, as the advertisements for this chair and the conversations I had with them said it’s great to use it in snow, etc.

For the last few days I have been contacting the Better Business Bureau — who told me to file a complaint, but who have no teeth — and the Consumer Protection Office, who told me to file a complaint, and may or may not have teeth, and the Attorney General’s office, who told me to file a complaint, and who — I think — do have some sort of teeth. This is just exactly how I wanted to spend my summer. Sitting inside, reading websites, making phone calls, and doing paperwork for a chair that has caused me pretty much nonstop stress and trouble.

Right now I’m in the middle of writing a “Letter of Demand,” which the AG and the Consumer Protection office told me to write. I’ve got my calendar and all my old emails to refer to to help my sometimes rusty memory. In this letter, I demand he comply with the various applicable consumer protection laws, and then say that if he doesn’t, he could be facing big, nasty, mean court charges. It’s just a thrill, and I know he’ll be totally cooperative and reasonable once he gets it.

Meanwhile, I decided to see if I could resurrect my old pchair, my Jet 3 Ultra, which was a pretty decent machine in its prime. Betsy and I took it all apart, as this picture attests.

Actually, we'd already put the base back together when I thought to take pictures. We took it apart a lot more than this.

It turned out we didn’t need to take it apart as much as we did. We discovered this when Betsy suggested I find and read the manual and see if it tells us how to change the batteries, which it did. However, I’m not sorry we took it apart, because I learned about what’s inside and where and how to make all sorts of adjustments. It also gave us a chance to vacuum out a lot of debris and remove dust and dirt — which always harbors mold.

We adjusted the seating, which had always been too low for my long legs — raising the seat and then moving it back so my feet rested on the foot-plate like they were supposed to. (The original vendor should have done this, but he just dropped it off and left. That’s a story for another time.) Then, we had to move where the controller box (joystick) was sitting, so that would be in the right place, too. Betsy did a lot of heavy lifting; it was quite a job, but now I finally have two chairs with proper seating.

We tried taking out the almost entirely dead batteries and replacing them with some others I had lying around. Usually if you don’t charge batteries they die completely, but I thought that since the others were very-nearly dead, these others couldn’t be much worse. I was wrong. They are completely dead, and now the chair doesn’t go at all. It won’t even charge. However, it looks fabulous.

Voila!

I even figured out a problem that had stumped me for years, which was how to make my elevated leg rests from my new indoor chair fit with it. I figured out how to remove some thingies that had been blocking the  rails. I also took the seat belts off my useless purple chair and put them on this chair. (Which is where they were originally from.) With the addition of seat belts and extended leg rests, it will be safer, more stable, and less tiring for me to use for extended periods, such as for walking my dog! Behold! . . .

Now I'm ready for action! (Sorta.)

I have been posting on a powerchair forum called Wheelchair Junkie, which is basically a bulletin board for power mobility gearheads. The folks there have given me a lot of helpful advice. I decided to get cheap replacement batteries for the Jet, just so I have a working backup chair and one that I can use with my existing van lift — so I can go to doctor’s appointments and take Barnum for working field trips to parking lots and stores and such. And, I will see how this chair does in the rough-and-tumble of my rural setting. Hopefully, it will be good enough until I get something with more power, clearance, stability, and speed. (I’ll talk more about ideas for that another time.)

I ordered my batteries from Amazon, the same brand and type that had been in there before. They arrived within three days, and I couldn’t wait to install them and see if the chair was viable! After all Betsy’s and my hard work, I was very excited.

I took out the old batteries, put in one of the new ones, started to connect the wires to the terminals, and then decided I should put the other one in, too, before I connected the wires. So, I took the second one out of the box, and . . .

Augh! The terminal was bent!

I emailed the seller and asked them to send me a new one with expedited shipping and take back this damaged one for no shipping charges (because each battery weighs 23 pounds, so shipping can be pricey!). I didn’t hear back from them. The next day, I emailed them again and asked for their shipping return address and an expedited exchange. No response. Today I sent the battery back, and the shipping charges came to almost as much as the cost of the battery itself! I wrote to them for a third time, told them the battery was on the way, and asked for them to defray the shipping costs and send a new battery. I also said I was “very unhappy with your customer service.” I hoped that would get their attention, since they get feedback scores from customers.

Surprise! Very shortly after that, an actual human from the company emailed me and said they were expediting my refund, but that my shipping charges were too high for them to cover. I don’t know what will happen in the end, because we’re still discussing it. Meanwhile, I ordered a replacement battery. I hope it arrives in perfect condition!

I want to get out of my frickin’ house! AUGH!

My theory is that I was in a wheelchair karma-accident in my former life. The only positive out of the battery disappointment was that when I tried to stand up from the ground and needed assistance, Barnum did a terrific job of bracing me. He is super solid on that skill. He stands nice and square and doesn’t move a muscle. Best stand-stay and brace on any dog I’ve had yet.

Good dog! Bad wheelchair vendors. If only I could clicker train them! . . .

– Sharon, who has used a carrot for a long time and has now taken out her big stick! The muse of Gadget (I LIKED the Jet! But not as much as the scooter, which went faster), and Barnum (Sharon never takes me for walks anymore. Sigh.)

Hot & Bothered

You may have noticed I haven’t posted in over a week. There’s been a lot going on, some of which I hope to catch you up on.

Partly, I’ve been busy with “the business of being disabled”: Doing my recertification for Medicaid as a working disabled person; getting a note from my doctor explaining why I can’t perform jury duty; and lots of stuff regarding my powerchair(s), which I don’t think is prudent to post at this time, except for this: Right now, only my indoor chair is working. My outdoor chair which I have blogged repeatedly about my many difficulties with is, of course, dead, and my backup chair is currently not running, either. Because my only working chair is not compatible with my van’s lift, I’m even more stranded than usual.

I also need to work a certain number of hours a month, so I’ve been trying to do a bit of paid writing, which is sometimes fun, but is also usually stressful and draining, particularly because it’s so hard for me to meet deadlines. (I haven’t even written my post for the Assistance Dog Blog Carnival! Eek.)

Unfortunately, I’ve discovered blogging and paid writing are pretty much mutually exclusive. I only have so much brain and energy for writing at a time. (If you would like me to devote more time to blogging, therefore, please note that I do have a donation button! ‘Nuff said.) I’ve written scores of partial blogs that haven’t been completed.

There is also the fact of the heat. We’re experiencing a serious heat wave. Because I live in New England, I’m also enjoying the typical summer humidity. For example, one night, it felt “cool” in comparison to how it’s been, so I checked the thermometer, and it was 90 degrees, but the humidity was only 57 percent. I say “only” because often the humidity is at least 75 percent. (Recently I checked it at 87 percent.)

I get automated email alerts whenever any serious weather is threatening. Here’s an excerpt from a recent alert:

HOT WEATHER ALONG WITH OPPRESSIVE HUMIDITY ARRIVES TODAY AND CONTINUES INTO SATURDAY…

HEAT ADVISORY NOW IN EFFECT…

* HAZARDS…EXCESSIVE HEAT WITH HIGH TEMPERATURES BETWEEN 95 AND
100.

* HEAT INDEX VALUES…UP TO 102.

* IMPACTS… EXCESSIVE HEAT MAY LEAD TO HEAT ILLNESSES FOR CHILDREN… THE ELDERLY AND THOSE PERFORMING STRENUOUS PHYSICAL ACTIVITIES DURING THE HEAT OF THE DAY.

PRECAUTIONARY/PREPAREDNESS ACTIONS…

THE COMBINATION OF HOT TEMPERATURES AND HIGH HUMIDITY WILL COMBINE TO CREATE A SITUATION IN WHICH HEAT ILLNESSES ARE POSSIBLE. … DRINK PLENTY OF FLUIDS…STAY IN AN AIR-CONDITIONED ENVIRONMENT… STAY OUT OF THE SUN…

KNOW THE SIGNS AND SYMPTOMS OF HEAT EXHAUSTION AND HEAT STROKE. …

ANYONE OVERCOME BY HEAT SHOULD BE MOVED TO A COOL AND SHADED LOCATION. HEAT STROKE IS AN EMERGENCY – CALL 9 1 1.

One thing you might have noticed is that THEY ALWAYS WRITE EVERYTHING IN CAPITAL LETTERS, TO INCREASE  YOUR  SENSE OF ALARM AT THE IMPENDING DOOM WEATHER. It helps to set the cheery tone that goes along with “heat stroke.”

There are also some assumptions in these alerts, such as that one has access to air conditioning. Well, no. Many people can’t afford to buy window units or to pay the electric bills that go along with them. Others, such as moi, cannot have window units because they accrue mold, which is impossible to completely eradicate. Mold gives me migraines, so that’s not a terrific option.

I bought a portable/indoor unit a few years ago, and it’s beyond useless. It still reeks and makes me sick, due to my MCS. It also doesn’t actually work, inasmuch as it actually increases the room temperature. I know this because it has a temperature readout, and I can see it climb, confirming what my flushed, sweaty skin is telling me.

When I used to watch TV or listen to the radio, I remember advisories telling people to go to air-conditioned malls or movie theaters. A friend in the city tells me there are now “cooling centers.” Of course, neither my friend nor I could go to any of these places, because we have MCS, and public spaces are not safe or accessible environments for us. (Even if I wanted to attempt to go somewhere, it would be difficult with the combined inability to drive and no powerchair that can go in the van.)

Well, I figured, I would just ride it out. Unlike Barnum, I can sweat, I don’t have a fur coat, and I do have a good fan that has been cleaned of all dust and mold. However, I did receive a warning call from the electric company’s computer, “Rita,” that due to the heat wave, we might have a power outage. Rita always calls me before any weather event that might cause an outage, because I am on their list of people who are medically reliant on electricity. Rita tells me I should take steps to evacuate if I need to. Since the whole reason that outages are so dangerous is that I can’t evacuate (which caused me such trauma during the ice storm two years ago), this is not very helpful.

So, I just hoped an outage wouldn’t occur. . . . Silly, silly me. I’ll write about that in my next post.

I’m also trying to pull together a post on suggestions for how to help your dog stay safe in the heat. Hopefully I can post it before winter. I’ll make sure to WRITE THE WHOLE THING IN CAPS, so that you will find it sufficiently alarming.

– Sharon, the muse of Gadget (who had the sense to get in the wading pool on days like this), and Barnum (who just lies in the coolest corners and mopes)

The Trained Retrieve

Or, “What’s the Point of That?”

Barnum and I are working on Level 4 Retrieve in the original (older) version of Sue Ailsby’s Training Levels. (Actually, we are somewhere between Level 4 and Level 5 on this.)

Every day, at least once a day (sometimes two or three times a day), we train with our dumbbells. We have three: a hard plastic white one, an unpainted wood one, and an aluminum one. I rotate them so he gets used to different materials, textures, and sizes of objects in his mouth. (We got them from J&J Dog Supply.)

[Note to MCSers: All of the dumbbells were very tolerable, after just a brief wipe down. Metal is inert and not a problem unless you’re sensitive to aluminum. The plastic is a very hard plastic that barely gives off any smell. And the wood is untreated poplar, which is a hard wood with very little odor; it is usually the wood best tolerated by people with MCS.]

Here is a video from ten days ago. (We have made a lot of progress since then, actually.) There’s no dialogue at all, until the very end, when we finish and I praise him and tell him “release,” so I didn’t caption or transcribe it. A brief description of the “action” of the video is below it.

[The video shows me holding out a white, plastic dumbbell to Barnum, him grabbing it in his mouth, me clicking and tossing a treat, over and over again! The nuances are that I sometimes hold off on the click a second or two longer, that I occasionally hold it higher or lower, and that he grabs the bit of the db in the correct position every time.]

When members of my household see us working this skill, instead of marveling with excitement at our consistency or the amazing improvement in Barnum’s enthusiasm, they say, “What are you doing? What’s the point of that?”

Fellow dog training fanatics addicts enthusiasts, do you ever feel like you live on the planet Clicookislobberania? I mean, how can it not be obvious that my holding this totally useless object while my dog puts his mouth on it, again and again, will naturally lead to him opening doors, carrying grocery bags to the car or house, retrieving pens I drop, bringing me my slippers, letting himself out to pee, opening cupboards and drawers, helping me dress and undress, pulling the covers off of me, answering the phone, and bringing me water from the refrigerator?

Well? How pointless is all that, huh? Does that clear everything up for you? How about a little support, dammit!

Sorry. I get overexcited. I know you just want to understand. I’m sure you don’t realize you’re wearing an utterly perplexed and dubious facial expression when you ask what the hell the purpose is of this seemingly tedious pursuit of . . . whuh?

No, to me it is far from tedious; it is thrilling. I work it so often because I want this skill so bad. You see, what we are working on is the foundation for The Trained Retrieve, the Holy Grail of the service dog foundation skill.

In fact, this is not one skill, at all. It is actually a combination of three separate behaviors: the take, the hold, and the give.

Why am I working so hard to get this right with Barnum? Because I glossed over it with my previous service dogs, and as a result, some skills were never up to par. Where things fell apart was maintaining a “hold.” Both Jersey and Gadget could retrieve. For example, if I dropped a scrunchy on the floor, or I sent them to get me the cordless phone, they could pick the item up (“take”), bring it to me (moving while they “hold” the object) and then put it in my hand (“give”).

However, neither of them was able to reliably hold the object quietly in their mouth while walking next to my chair, or while standing still next to me while I freed up my hands to take it. No, if I didn’t take the object when they brought it, they’d either drop it in my lap, or drop it on the floor and pick it back up (repeatedly), or shift it around in their mouths before giving up and dropping it on the ground again.

[Warning: The following paragraph is dense with clicker training terminology. Proceed at your own risk of being bored, confused, learning something new, or some combination thereof.]

I always thought of this problem as not having the “hold” on cue properly, but recently Shirley Chong gave me a different perspective by saying that the “give” was not under stimulus control. Both are true. My previous service dogs did not maintain their “hold” behavior until released, so that was not under stimulus control. But they also dropped the object (“give”) before I asked for it — in other words, before it was cued, so that was not truly on cue, either.

[Okay, those of you not interested in dog training or operant conditioning can refocus now.]

In fact, this seemingly boring repetitive exercise doesn’t just teach three behaviors. It addresses several essential aspects of all three.

First, it teaches Barnum how to take an object and hold it in the proper position (so that the bar rests behind his canines and in front of his molars), making him less likely to damage something by crunching it. Because I hold onto the db and take longer and longer to click, he learns to hold it until he’s cued to release it (give). This part of the training, above all, will give me with that heretofore elusive duration “hold.”

Eventually, when I start to let go of the object, he will learn that if he keeps quietly holding it in his mouth, he gets a click/treat, but if he drops it on the floor, he gets nothing. And, yes, at some point I will put the object on the floor (and eventually farther and farther away from me), and Barnum will learn how to take it (grab it correctly) from the floor. An object like a pen or bottle would be taken in the same way as the dumbbells, behind his canines. An object that is flat, thin, hard to grasp, or that requires care, would be “picked” with his lips (a pair of glasses), or front teeth (a dime or pulling my socks off my feet). When grabbing a pull cord to open a heavy door, he needs to get it in his molars so he can pull hard enough.

While the retrieve (go there, get that thing, bring it to me) seems like a simple skill — and for some dogs, especially dogs who naturally like to fetch — it is. Barnum does, in fact, know how to do this. However, this is not the same as building a trained retrieve, with each part equally strong and under stimulus control, providing multiple applications beyond retrieving. It is that part of the process that requires so much time, patience, and attention to detail.

How does it get applied “in real life”?

When Barnum knows these skills, I can tell him to take and hold a door pull, and pair that with “back-up,” and voila! We have door opening.

If I want him to bring me water from the refrigerator, he has to take the door pull and hold it while pulling back to open the fridge door. Then he has to take and hold the water bottle in the proper position in his mouth so he doesn’t puncture the bottle or drop it. He has to maintain that firm but gentle hold while he goes around the fridge door and noses it shut, and then brings me the water. At that point, I will ask him to give it to me, but perhaps only after doing “paws up” on the bed.

Do you get it now? This is the gateway drug skill to most of the service tasks Barnum will need to know! Now you see why dog training is so exciting and addictive, right? Right? Alright, wake up. The post’s over. [Sigh.]

-Sharon, the muse of Gadget (I learned to retrieve using my favorite toy, my Dino!), and Barnum, SDiT (If I chomp the bar thing in her hand, I get beef heart!)

Waspish Wednesday: The Chair! AUGH!

I just . . . I can’t even. . . . WTF, people, WTF? I’m incoherent with frustration. At. The. End. Of. My. Rope.

Spent all of Monday going to people who built it. SAID they fixed it. Brought it home. Plugged it in. Next morning, dead. DEAD!

They are offering another solution that I don’t think will work. Don’t know what to do. Beside myself.

If there was any other freakin’ option for a powerchair that can handle rural conditions and doesn’t cost as much as a sporty new SUV, I would take it. AUGH!

I don’t want advice, I just want to vent. I just want to be able to take Barnum for walks!!! Why should that be so frickin’ hard?!?!?! AUGH!!!

For now, I’m sleeping on it. I have some ideas for gathering more information, too.

I’m overloaded with too many other things to work on right now, anyway — training Barnum, various writing projects, NVC homework — so it will just sit there like a useless behemoth until I decide what to do next. That is all.

– Sharon, the muse of Gadget (her old chair worked for me), and Barnum, SDiT (why don’t you take me to the pond anymore?)

P.S. AUGH! AUUUUUUUUUUGH! AAAARRRRRRGGGHHHH!!!!

Signal Boost: Phone Support Group for PWDs

This is a signal boost for a support group, held by phone, for people with disabilities or chronic illness. I know both facilitators, and they are warm, caring, experienced counselors. Please cross-post, forward, etc. Thanks!

– Sharon and Barnum, panting-hot-SDiT

Join a support group by telephone from anywhere in the world*!

Connect with others dealing with concerns similar to your own.

Boston Self Help Center is offering a peer-counseling support group for people with a disability or chronic illness that is being held by telephone.  The support group, which has been running since February, is now looking to add two or three new members.

Boston Self Help Center has been providing peer-counseling support groups in a cross-disability setting for over 30 Years. We charge on a sliding fee scale; you pay only what you can afford. Your fees help make possible the continuation of our support-group program.

If you’re interested in learning more about the group, please leave a message for Linda or Cindy on Boston Self Help Center’s message line: (617) 277-0080.

*While the conference call is free, group members are responsible for paying their long-distance phone charges. Since most group members are in the US, if you are outside the US, you might need to be flexible about time of day.

On Grief: It Helps When You Say…

I recently wrote a post about how much I’m grieving, how sad I am. Writing the post, itself, was a very important step for me. It was cathartic, and there was something about being able to say in a public forum, “I am hurting,” that was healing. I got some responses I found supportive and helpful.

I also got some responses that triggered feelings of anger, frustration, and loneliness. I wished I had never read or heard these comments, but since I had, I wavered about how to respond to them. Part of me wanted to ignore them. Another part of me wanted to respond by indicating that these responses were not helpful because I wanted to head off similar comments.

Part of me wanted to respond with a snarky post, such as a bingo card (which I still might do for other reasons or on other topics, because I love them so much — see examples here, here, and here. Oh, and what the heck, some nondisability bingos here). However, I am studying nonviolent communication (NVC), which has really changed my perspective on communication and how I try to communicate; I have learned it is often much more helpful to tell people what I want than what I don’t want. I was trying to think of how to respond in an NVC way and finding the mere idea baffling and exhausting.

Then I read this amazingly thoughtful post by Lisa Bonchek Adams about a list that appeared in the New York Times of what not to say to someone who has cancer. Lisa agrees with some of the listed items and not others, but her main point is that she never made a list of what to say or not to say for some very specific reasons. Her reasons make so much sense. (The comments from her readers are also full of terrific insights.)

One reason she gives is that people are already nervous about how to respond to someone who is seriously ill (and I would add the same is true for those going through any sort of crisis or who express strong “negative” feelings) and worry about saying the right thing. By telling people what not to say, you are contributing to that nervousness, which increases the chances of them saying nothing, which is often the worst thing.

Second, she says it really makes a difference who is saying it to you and how it is said. I absolutely agree. For example, I usually hate getting unsolicited advice from most people. However, sometimes suggestions are welcome if it’s someone I am very close to who is also chronically ill.

Third, she says the most important factor is that the person’s expression is honest. There is a lot of truth to this, although I don’t agree 100 percent. I don’t always want to hear someone’s honest thoughts, feelings, or opinions, either, depending on what they are, but better at least that they say something heartfelt and honest than that they present a platitude.

I strongly encourage you to read the post and the comments.

This topic is going to keep coming up here, not just because I will always be chronically ill, but because right now I am finally unearthing my feelings of grief that have been “frozen” for several years. I have a lot to grieve: my service dog’s death, one of my best friend’s death, the deaths of other friends, the “parting of ways” of my two very closest friends and several other friends, the multiple and devastating losses that have accompanied my new disabilities and illnesses associated with tick-borne disease, and more.

Some of these losses happened during times when I was literally struggling to survive. I didn’t have the luxury at that time of grieving. Then, there were losses that happened so close together that I was completely overwhelmed, unable to process any of them (such as the three-week period where I went through a PTSD-inducing natural disaster, my best friend stopped speaking to me, one of my other best friends died, and my therapist terminated with me against my wishes and with no referral).

I was numb. That was how my body/mind enabled me to survive — numbness. I didn’t have a choice, nor should I have to defend how I coped, but I found that when I was honest with people about being numb, their response was usually to tell me not to feel that way.

Lots of people told me, when I was dealing with some of the more public losses, such as Gadget’s death, that I should cry, I should journal, I should let my feelings out. This was beyond unhelpful. For one thing, I wasn’t able to do these things. Everyone grieves in their own way, and usually the best you can do is to just follow where your feelings lead you and try to honor them.

I actually tried to force myself to feel, to cry. It didn’t work. I couldn’t do it. I was still numb.

My therapist told me that there was a reason I was numb, and that it’s a normal way to grieve, and that I would be doing myself a kindness to accept that this was the coping mechanism I needed to survive. She also encouraged me not to spend time with people who told me I was grieving wrong.

The other problem with telling me I shouldn’t be numb, that I should cry, etc., is that they laid a burden of guilt on me. Instead of hearing compassion and understanding, I heard judgement: “You should cry. You should journal. You should let it out. Because you’re not grieving this way, you’re grieving wrong.”

“Should” statements are never helpful. Really. Even if you are offering a heartfelt suggestion and have been given permission to offer advice, don’t use “should.” Use, “I have found that it helps me to” or “have you considered?”

Now, I am having my feelings and expressing them. I am crying. I am feeling sad. I am also feeling angry, frustrated, hurt, lonely, and all sorts of other permutations of pain. This is because I am grieving. Grieving can encompass any emotion, and it can come at any time after (or even in anticipation of) a loss. There is no right or wrong time for grief; it happens in cycles, in stops and starts, over short periods and long.

The irony is that I am finally doing what all those people told me to do in the last several years, and I’m hearing negative reactions to this, too! I’m being told to buck up and look on the bright side and move on. I feel really angry about this.

All of this has led me to think: “What do I want to hear when I am expressing suffering or pain? When I am grieving, whether it is in a way that is perceived as acceptable or not? When I am numbed out or when I bawling? What have been the most helpful comments people have said on the phone or posted on my blog?”

The answer is that I want to know that my feelings are welcome. That the other person wants to listen. That they are okay with whatever I am going through. That I can just express myself without having to worry about their needs for the moment. That they care.

“Thank you for sharing this with me,” and “I’m so glad you told me,” are two examples of comments people have made that felt very welcome. I just feel a sense of opening and relaxing and relief: “Okay, it is safe to share with this person. I can be myself. I can even test out if I can say more.”

“I appreciate knowing what’s going on for you” or similar permutations indicate that the feelings I’ve already shared have been heard and received and held tenderly. They also suggest that it’s okay to share my feelings or experiences again. I think I particularly need that latter message, “I am open to your expressions of pain; it is not too much for me,” because so many people abandoned me in the last few years, and the message I internalized from these abandonments is, “Your distress, and the way you express it, is wrong, bad, and too much. You drove me away with your overwhelming feelings.”

I think that’s another reason I’ve been numb for so long. After hearing the message so strongly to shut up and not burden people with my pain, numbness was a self-protective mechanism.

Having other people tell me not to be numb didn’t help, because I just filed it away under, “More things I do wrong that drive people away.”

Telling me, “Thank you for opening yourself to me. I will hold what you say with care. You are welcome to come back to me and ask if you can share more of your feelings,” helps me feel brave enough to try to open up again.

Enough of you have said often enough in your comments that you appreciate what I say, that I have the courage to write this post and others like it. That I am able to keep trying again. Thank you for that. It has meant more than I can say. It has meant that I am finally able to feel wretched and sad and grief-stricken. This is truly a gift.

– Sharon, the muse of Gadget, and Barnum, SDiT (who gave me lots of kisses today)