Are You Listening to Me?

On the way home yesterday, there was a piece on NPR about a blogger who asked what you might say to your 20-year-old self, if you had the chance. One of those If I Knew Then What I Know Now sorts of things. As a topic for a blog post, it sounds kind of intriguing. Also self-indulgent, self-absorbed, all about me... what's not to like? Totally my kind of thing.

Not that I think there's anything I could say that would make a dent in my 20-year-old self's hard head. I was a stubborn, self-centered, not particularly likable control freak. If there was something I wanted, I would do whatever it took to make it happen, even if it meant running roughshod over other people. I had no social skills to speak of. What can you say to a person like that?

I know she won't listen. But for what it's worth:

• Most of the things you wake up at three o'clock in the morning worrying about will never happen. If there's nothing you can do about it, right then, go back to sleep. Preemptive worrying is a waste of time.
• You do not need a man in your life. Fortunately the men you have been/will be involved with are all good people; you'll be lucky that way. They are just not right for you. Fear of being alone is not a solid basis for a partnership. Learn to be by yourself and like it.
• You will never in a million years imagine the kind of guy you will eventually wind up with. Never in a million years. You'll be lucky to have him, for sure. He's just not what you would expect. Ever.
• You're not fat. The women in your mother's family, back to the flood, have big butts. There's nothing you can do about it.
• It's OK to be goal-oriented. A certain amount of determination is not a bad thing. That doesn't mean you have to be such a little s#!t about it.
• If there are things you really want to do, do them while you can. I'm just sayin'.
• You don't control nearly as much as you think you do. I know it's hard to let go. Believe me, I do. Try asking yourself, "500 years from now, what will it matter?"

That's enough for now, but I'm not through with you. We'll come back to this. Are you listening to me?

Greyhound Gig

One of the things on my list of Things to Do After I Retire was to volunteer for something. It seemed like a good idea. Isn't that what everybody says they're going to do after they retire? One ought to make a contribution somehow, oughtn't one, even if one isn't paid for it? The trick would be finding something I can actually do.

The obvious victim was Greyhound Pets, Inc. Scarecrow and I have volunteered with this group since we adopted our first retired racer in 1997, but haven't been as active lately as we used to be. We used to host regular meet-and-greets at local pet supply stores and a nearby shopping center, and I can't do that very well anymore. We played music for their annual adoption fair, and I can't do that anymore at all. Their current webmaster has everything under control, thankyouverymuch. I wouldn't be much help at the kennel. It was not entirely clear to me what I could do, volunteer-wise.

As it turns out, GPI needs a newsletter editor.

Hey, I can do that!

Ironically, since we lost our last greyhound a couple of months ago, I'm editing The Bark. I don't think I'm overcommitted. Due to budgetary constraints, it only comes out twice a year and it's only 16 pages long. There are three people working on it. The next issue doesn't come out until November. It's not a high-stress job. I can do this.

It's kind of nice to have a deadline again.

The Lung Vac

Seems like I've had a flurry of doctor appointments lately. Two weeks ago, I checked in with the rehab medicine guy. Since I was whining about being short of breath, he referred me to a guy in the pulmonary clinic. I expected it would be a total waste of everybody's time; they would listen to my chest, decide I didn't have pneumonia or asthma, and send me on my way. The rehab guy allowed as how that might be the case, but said he was referring me to somebody with a particular interest in neuromuscular disorders. I was pretty sure they wouldn't find anything wrong, and if they did, there wouldn't be anything they could do about it. But I went.

So last week I show up at the pulmonary clinic. After some puffing and blowing, they tell me my lung capacity is about 50% of normal, and ask if I have any trouble coughing. Well, yeah, as it happens, I do. Giving in to my penchant for overstatement (hyperbole is the best thing ever!), I tell them I'm afraid if I ever get a respiratory infection, I'm toast. So they make me an appointment with a respiratory therapist.

So on Monday I see the respiratory therapist. After some more puffing and blowing, he tells me if I ever get a respiratory infection, I'm toast. Somehow it's more disquieting, coming from him. He gives me a thing that looks like a purple balloon with a hose, and takes Scarecrow and me through some exercises that he describes as range of motion for the lungs. Then he pulls up a machine that is basically a vacuum cleaner with a mask attached. It blows air into your lungs, then sucks it out. It feels... weird. It sounds like, well, like a vacuum cleaner.

The dogs are going to hate this.

Summer Solstice

Celebrating summer solstice today, the longest day of the year. The longest chilly, grey, dreary, gloomy day of the year.

Don't get me wrong. I love living in a place where it starts to get light at 4:30 in the morning this time of year, and isn't really dark until almost 10 at night. I love living in a place that's green all year round, and ferns grow wild. I realize that the flipside of these things is that you get about 15 minutes of daylight in the dead of winter, and it rains a lot. I realize there is a price to be paid. But really, even in Seattle, by mid-June a glimpse of blue sky at some point during the day ought not be a remarkable occurrence. This year, it is. A friend referred to it as June-uary.

So, today is the first day of summer. I'm ready.

Time Flies...

One year ago today was my last day of gainful employment.

It's not an anniversary to celebrate. I wasn't ready to retire. Although my job wasn't my passion -- I was a tech writer, for Pete's sake -- it was interesting, challenging, and I was good at it. It accounted for much of my self image, provided most of my social interactions, and was a reliable source of nerdy techie toys. And, of course, there was the paycheck.

Sometimes I think I should've thrown in the towel sooner than I did. Other times I wonder how I managed to hang on so long.

Other than the significant and painful drop in income, I expected the transition from working to not to be more painful than it was. Since I was already working in a remote, empty office at Bob's Books and Day Care Center, the only difference in my day-to-day routine was that I didn't do any work. Every morning the realization that I don't have to actually accomplish anything still comes as a real relief. I still feel guilty about not having to do any work, and about feeling relieved that I don't have to do any work.

At first, I spent a lot of time getting disentangled from my former day job, and getting disability insurance and SSDI set up. Since then, I'm afraid I've been lamentably indolent. I have made no inroads on the lists of things I thought I would do after I retired. I expected to be bored, but I haven't been. Perhaps I'm just easily amused.

They say time flies when you're having fun. I must be having fun.

Who Am I Hiding From?

I'm still trying to figure out what anonymity means in the blog world, and how anonymous I really am, and how anonymous I want to be. I don't use my name in this blog or in my profile, but really, come on. This is the Internet. If somebody wanted to find out who 'zoomdoggies' is, it wouldn't be hard. So who am I hiding from?

The majority of people who read this blog -- all four of them -- don't know me. We will probably never meet in person. Why do I need to be anonymous to people who don't know me anyway?

I don't. I'm hiding from people I know.

A lot of the stuff that comes up in this blog I wouldn't talk about with most of my family, friends, or acquaintances. It would feel extremely weird, being with them in person, knowing they had read some of these posts. I couldn't say why that is. It's not that they don't know I have MS. I mean, duh. Somehow, it's easy to expose the gory details to people I don't know and will never know. Sharing them with people I know is hard.

It's not that I try to keep the blog secret or anything. This is the Internet, for Pete's sake. I know Scarecrow reads it, and I admit I consciously try not to write anything that's going to piss him off. A couple-three friends know about it; people who, for one reason or another, I trust to read past all the MS and disability stuff and still be my friend. It seems rather a lot to ask, so I generally don't.

I think this came to mind today because I missed the chance to meet some Seattle bloggers, and a couple of not-Seattle bloggers, live and in person. It sounded like a fun get-together and I was really looking forward to it, but the stars just didn't line up. I'm mildly devastated, but I'm dealing with it.

Anyway, it got me thinking. From reading their blogs, I feel like I kind of know these people, even though I really don't. How would it feel once they went from being kind of anonymous to being people I've actually met in person? Even though I still don't know them, it would feel more like I do. Would thinking that people I actually know might be reading what I write change the kind of thing I'd be inclined to write about?

As it turns out, I won't have to confront that question just yet. Maybe I'll find out next time.

Mighty Hunters

The wolves are on the prowl. Narrow wolves, but wolves all the same.

Tuffy is off at the gym. Scarecrow just left to run some errands. The front door clicks shut. No sooner does the sound of the van fade into the distance than I hear narrow little feet trot down the hall towards the kitchen, circle through the utility room, past the dog food bin, back to the kitchen and dining room, down the hall to see if Tuffy left her door open, back up the hall, a quick sweep through the living room, and back to the kitchen. The sharp click of narrow feet on tile means they were scoping out the kitchen counter. A resonant thump on hardwood indicates that anything toothsome that might have been on the dining room table is there no longer. If any of these are followed by the sound of gnawing, I can only hope their hunt came up empty, and they had to settle for a Nylabone. I can usually tell. Paper towels or napkins shred into little tiny bits without much sound. The rustle of a plastic bag or the rending of fabric is probably bad.

At this stage, the slap of the dog door most likely means they found something interesting enough to haul out into the yard. I really hope they didn't find any toilet paper. If it's Tuffy's underwear again, she's really going to be pissed, but maybe she'll stop leaving her laundry on top of the washing machine.



I suppose I should follow them around, telling them "No!" or "Off!" or "Leave it!", as appropriate, even if I know they'll be back into it as soon as my chair is turned. But by the time I catch up with them the hunt is over, the mighty hunters asleep on the couch, or in a patch of sun in the yard, awaiting the return of the rest of our pack. If they ate something, it's been eaten. If they chewed something up, it's already chewed. If they TPd the yard again, at least it's not raining.

Still in the Middle

There is progress, however slow, on several fronts:

We met with the wheelchair guy on Tuesday. He made a list of the bits we will need...

Whoa, wait... there's a bald eagle soaring outside my window...

OK, where was I?

... the bits we will need to drive my chair using a head array control. The next step is to figure out how much they will cost, and how much of that my insurance will cover. This ball is not in my court.

We met with the rehab medicine guy yesterday. I could (and did) report that we were working on a different method of self propulsion (Yesss!), we were in the process of setting up home/respite care (Yesss!), and the referral to the pulmonologist hadn't happened yet, but it's not my fault. The clinic is supposed to call to set up an appointment. This ball is not in my court.

In a few minutes we'll be leaving to meet one of the home care folks. I'm sure they'll be very nice.

Constant vigilance has prevented Jasmine from causing extensive property damage or incurring large vet bills, but on a couple of occasions Tuffy turned her back on partially-constructed peanut butter and jelly sandwiches. Jaz took them apart and was caught licking off the jelly. But she's very sweet...

In the Middle of Everything

I suppose being in the middle of something, while not as emotionally satisfying and morally laudable as having finished, is better than not having started it yet.

Project: Come up with a different way to control my power chair before I'm trampled flat (again) by the Red Queen.

Status: Given that these projects always take longer than you expect, probably not as far along as I'd like to think. I spent the weekend trying out a loaner chair outfitted with a head array control. I decided it will eventually work better for me than a joystick, which is unfortunately not saying a great deal. The next step is to find out how much it might cost to outfit my current chair with such a thing. The first step in the next step is to meet with Mike the wheelchair guy again. We're doing that tonight.

Project: Arrange for backup/respite home care.

Status: I called up a couple of the places on the list of referrals we got from the MS society. We'll meet with one later this week, another early next week. I'm playing phone tag with a third place. I admit the thing that finally got me moving on this was that the last time I saw the Rehab Medicine guy, two months ago, I assured him I would take care of it. I've got an appointment with him on Wednesday. I find shame and humiliation to be very effective motivators. But hey, it's better than not having started it yet.

Project: Acquaint new pack member with the rudiments of civilized behavior.

Status: We're not there yet. For such a narrow dog, she's kind of a mooch at meal times. Her taste in literature, while enviably broad, apparently prompted her to devour a couple of Tuffy's books. Scarecrow found little doggy footprints in the kitchen sink this morning. But she's very sweet...

Watch It!

Some years before Scarecrow's dad died, he suffered a closed-head injury that left him with a variety of cognitive problems, including severely impaired short-term memory, and social skills that were rudimentary on a good day. I have a vivid mental image of this retired Air Force pilot careening down a grocery store aisle in an electric cart, grumbling at all the little old ladies (this would be Tampa/St. Pete, so, statistically speaking, most of the other shoppers would be little old ladies) to "Watch it!!"

Yesterday afternoon, the wheelchair guy brought a loaner chair outfitted with a head array control for me to try for a couple of days. It has proximity switches in the headrest that control all of the chair's functions -- forward, reverse, direction, tilt, recline, everything. The loaner even goes up and down, which my own chair does not. I realize that, at this point, my options for self-propulsion might be this, or nothing. I realize it will take a while to learn to use, although it's looking like my surroundings could take quite a beating in the interim. I'm sure the controls on my own chair could all be customized to work better for me. While I imagine it would all become second nature after a while, I'm not finding this... ah... intuitive. I'm trying not to be in too much of a hurry to decide I hate it.

Unlike the proportional control of a joystick, with a switch you're either moving, or you're not. If the speed is set so you have a chance of safely negotiating corners and turns, you won't live long enough to get where you're going. Selecting a different speed involves stopping, performing an arcane sequence of taps and bumps to bring up a menu on the display, selecting Speed, choosing a different option, tapping and bumping your way back to the menu, and then proceeding on your way. Wasn't that easy? At least, I think that's the procedure. I wouldn't really know, because banana-slug-speed is still way more than I can safely manage. Although as Patrick at Caregiving Yours pointed out, "Freedom is always fashionable," the additional hardware makes my power chair look even more like a robo-monster than it did before. And, while I'm whining, my neck really hurts!

OK, I admit that one of the less attractive aspects of my personality is that my first response to any new idea, unless of course it's my own, is probably No. I need to keep an open mind. I'll use this contraption until the wheelchair guy comes to reclaim it. I may even get crazy and take it somewhere. You've been warned.

Watch it!

More Distractions

My task for the day was to contact some people about backup/respite home care, and I may yet get to it. I was distracted by a conversation I had yesterday with my mother, about a picture of my grandmother.

My cousin, who sent me the picture, says it was taken when Grandma Helen was 17, which would've been around 1907. It was obviously taken at a farm. As far as I knew, Grandma Helen was a city girl, born and raised in Toledo, Ohio. I asked my mom if she knew how my grandmother came to have her picture taken at a farm.

My mom confirmed that my grandmother always lived in town, but she remembered visiting an Aunt Louise and Uncle John on a farm when she was a little girl. That was the only farm she could think of. Although my mom had, conservatively, a million aunts and uncles, she did not have an Aunt Louise or an Uncle John. She thought they were related to my grandmother somehow.

After a little digging around, it turns out my great-grandmother had a sister named Louise, who married a guy named John. They lived near Toledo in 1920 and 1930, which would've been about the right time. They would've been my grandmother's aunt and uncle. Good enough for me. I'll call the mystery solved.

So that was the distraction du jour. It's only 3:30, so unless I come up with something else I'm going to have to get back to that list of home care referrals.

Wait, I found a couple of bills I need to pay.