Sharing the Pain

Many of the websites I visit and the blogs I read are MS-related. Most of the time, I don't find them all that depressing. For one thing, a lot of the time they're not about MS. These people do have lives, after all. But even when they're writing about MS, reading them doesn't usually make me feel depressed. Yeah, having MS is crummy and I'm sorry that anyone has it. I wish I didn't have it myself, truth be told. I don't like reading that anyone's having a flareup or that their symptoms are getting worse. It might make me feel sad, but not depressed. The other day, however, I ran across a blog that I found profoundly depressing.

It's written by a 19-year-old girl who takes care of her mother. The mother has MS, and is apparently pretty seriously disabled. The girl is torn between loving her mother, and hating having to take care of her. It was not easy reading. It left me feeling really depressed.

You see, everything she has to do for her mother, Scarecrow has to do for me, and more. How could he not hate it?

Thinking about it, I realized I mostly avoid reading caregiver blogs. It's so hard for me to put myself in caregiver shoes, to imagine doing that job. I don't know how they do it. It's just too hard, and it never stops. It's easier for me to deal with having MS myself than it is to think about what it does to my family. I have no choice, after all. They could walk away, but they don't.

I've tried to avoid having Tuffy take on caregiver chores, to the point of hurting her feelings sometimes, I think. I don't want her to feel that she has to stay here and take care of me, instead of living her own life. It's a luxury we have because Scarecrow takes care of me instead. If it weren't for him, my daughter might be the angry young woman writing that blog. Hating herself, for hating her mother.

So, there's that. It took a serious dose of old-timey music, a couple of books with absolutely no edifying content, and some really stupid movies to restore my normal grumpy, cynical outlook on life. Sometimes it helps to share pain. Sometimes shared pain just makes more people hurt, and what's the point of that?

Tomorrow is Scarecrow's first day at Gloria's Books and Adult Day Care. The adventure begins…

St. Scarecrow

On the radio this morning I heard a piece about a guy who had an unfortunate encounter with an officer of the law. I wasn't really paying attention so I didn't catch the details. Apparently Bad Things Happened, and the guy got his head slammed into a concrete wall. He is now totally and permanently disabled.

I started listening when they talked about how his wife has to take care of him 24 hours a day. She has to feed him. She sleeps in the same room, because she has to wake up three times every night to turn him so he doesn't get bedsores. She's a saint, they said.

Fortunately the $10 million she gets from the lawsuit will make it possible for her to care for her husband for the rest of his life.

Unfortunately for Scarecrow, I did not have the foresight to acquire a disability that is somebody else's fault. He feeds me, he wakes up three times every night to turn me over, and he does a lot more besides; I will need this help for the rest of my life, and nobody is going to pay him $10 million to do it. Yet it appears he's willing to do it anyway.

He says I would do it for him if our roles were reversed, and while I like to think that's true, I'm not really sure I'm that good a person. He's just a good guy. I wouldn't say he's a saint. He doesn't believe in them anyway. But he's a really good guy.

So, in lieu of $10 million, I thought I should tell him that I love him and I appreciate everything he does for me. Since it seems kind of self-serving to tell him this while he was actually doing something for me, I wanted to wait for a time when he wasn't. The opportune moment, kind of thing. I had to wait a long time. I hadn't realized how much of his time he spends doing things for me.

The beginning of our care partnership was so gradual that I can't remember how it started. He just started helping me do things that were hard for me. Some tasks I did not want help with, no way, no how. (I can sometimes be a little stubborn that way.) He allowed me to struggle, and when I finally gave up and let him help, he never asked why it took me so long. The number of things I resisted assistance with were so few compared to the number of tasks that somehow Scarecrow assumed without my ever realizing it. When someone reads your mind so much of the time, how irritated can you get when they occasionally provide help you don't want?

As Scarecrow started helping with more and more of the things I used to do for myself, we evolved some very complicated procedures that I can't imagine anyone else ever figuring out, and even if they could, I can't imagine anyone but another ex-wrestler being able to perform. Even for $10 million.

I'm glad that woman and her husband were compensated for the injury that was done to him, but nobody's going to pay Scarecrow $10 million to take care of me. I guess he's OK with that.

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.

When We Get Bored, Bad Things Happen

Scarecrow is having hardware issues. His office at Bob's Books is right above the room that houses the Adult Day Care Center, so I can hear the crashing and thumping and muffled, but discouraging, words. It might be a bad time to remind him that he needs to call the vet to make an appointment for Ernie.

There's no mistaking when Scarecrow's mad. He has a crashing, thumping, hollering, foot-stomping temper. It can be quite the spectacle, but it never lasts long and when it's over, it's over.

Me, I'm one for the slow burn. When I'm mad, I'm surly and quiet. I'm slow to forgive, and I never forget. Scarecrow's way is better, really. It's easier on everybody. But everybody in my family was a sulker. I never learned any other way.

Anyway, Ernie has two new lumps on his leg where we recently had the latest one removed. We knew they were likely to regrow, but these came up really fast. His leg didn't seem to hurt before, but now it obviously does. His hind legs are weak. He has slipped and fallen on the hardwood floor a couple of times recently, and has trouble getting up. He has even left a few kibbles in his bowl, which is not at all like our boy. We always said that if Ernie ever turned down food it was time to call the vet because he must have one foot in the grave and the other on a banana peel.

He is 12 years old, and I don't want to keep carving on him, but I don't want him to hurt. So we need to talk to the vet and see what we can do for him.

In the meantime, it's looking like a nice weekend and he still enjoys lying in the sun. As long as the dog bed isn't infested with whippets.

Um. About the bored thing. I've been messing around with my blog template. Let me know if I broke anything, OK? To borrow a phrase from every software developer I've ever known, 'It works on my machine.'

I Have Been So Looking Forward to This

Today is Tuffy's last day as a teenager. Tomorrow she turns 20.

As teen years go, I have to say I think we got off pretty easy. I have no teen-zilla horror stories to relate. Aside from the occasional Sunday night emotional core meltdown, she has always been even-tempered (for a teenage girl-type person) and kinda nerdy, taking nerdy classes, playing a nerdy instrument (viola), and participating in a nerdy sport (wrestling, two-time All-American, hence the nickname). She has never felt obliged to do what everyone else does, and doesn't care about being cool. Gotta like that, in a kid.

Still, I'm relieved to no longer be the parent of a teenager. I don't understand her preference for English and philosophy and drama classes instead of chemistry and zoology, but I don't have to -- she's 20 years old. I don't understand going to the gym six days a week, doing mixed martial arts, but I don't have to -- she's 20 years old. She's learning to go her own way, and I'm learning to let her do it. It will be an adventure for both of us.

Why Doesn't My Life Have a "Ctrl" Key?

I admit it. I have always been a control freak. If you're not doing it my way, you're doing it wrong. I know this is not an attractive aspect of my personality. I would have been a nightmare micromanager, had I ever really been a manager, which, fortunately, I was not. Even now, calendars and planners and to-do lists are my life, although the plans and tasks are for someone else to carry out. For people like me, MS is a total poke in the eye with a sharp stick.

It's not just the unpredictability of the disease, the symptoms that flare up unexpectedly, the complete inability to anticipate what I will, or will not, be able to do, even a few hours in advance. That's bad, but, for me, that's not the worst.

It's not even having someone else turn me over in bed, or adjust my clothes, or choose a bite of food for me. I am grateful that I have someone to do this for me -- I am I am I am! -- and I try not to complain unless it's causing physical pain. I try not to complain, even if it's not the way I would do it. And it never is. Even that is not the worst.

The worst is watching Scarecrow prepare Thanksgiving dinner.

I am an ungrateful wretch, I know, to even think it. Scarecrow has taken over cooking responsibilities like everything else he does for me: cheerfully and without complaint. If he resents the imposition, or the interruption, he never, ever, lets on. Unlike housework, which he doesn't like any better than I ever did, he finds cooking entertaining. He is looking forward to this.

Truth be told, it will be OK. It's just for the three of us -- no guests, no family, no distractions, no pressure. Although Scarecrow cooks with more enthusiasm than skill, he will manage well enough. I'm sure he won't leave the water running in the sink and flood the kitchen and dining room and laundry room again this year. He cooked Thanksgiving dinner last year, and it turned out fine. It's just one meal. We are fortunate to have it. Let's keep some perspective here. If he needs help, he will ask for it. If he doesn't ask, I will remain respectfully, gratefully, silent.

Even if he doesn't do it the way I would. He's doing it. That's good enough. That's plenty good enough.

Out of the Loop

They sprung mom from the hospital yesterday afternoon. As usual, it was my brother who took off work to do the fetching and carrying and running around. He's a great guy, my younger sibling. We're all lucky he lives close enough to help, and that he does it without complaint. It's not like I could be any help if I were there --  I'd be underfoot, more like -- but I'm sure as heck no help from 1200 miles away. In fact I'm just one more chore, because he's got to call me and tell me what's going on. This is not an MS thing. It's an Aging Parents Living Far Away thing. It's a problem for which I wish I  had a solution.

Anyway, she's doing OK. For now.

Since I can't do anything useful, I might as well do something fun. We're off to a UW volleyball game against Stanford. I'm still getting used to this whole spectator sport thing. It seems odd to critique the game played by these tall, slender, athletic people, when I myself could never play volleyball worth a darn. But for Pete's sake, what's up with all the service errors?

Gettin' Old Ain't For Wimps

My mom fell down a couple of brick steps on Monday afternoon.

She was puttering around in the garden. It was starting to get dark, she was getting tired, and her vision has deteriorated to the point where she's probably legally blind. She tripped and fell.

She's OK, for a given value of "OK." She didn't mention it to my brother when he talked to her on the phone Monday night, but by Tuesday morning she was in enough pain that she thought she'd better see a doctor. Fortunately, to everyone's relief and amazement, she didn't break anything. They're keeping her in the hospital for a couple of nights so they can give her some serious pain meds.

My mom turned 87 a couple of months ago. She's had assorted cardiac and respiratory problems, colon cancer that left her with a colostomy, an infection that cost her the tip of her index finger. Despite several eye surgeries, she can't see worth crap.

She and my dad, who will be 89 in a few weeks, still live in the same house they've lived in since I was a toddler. It's mostly all on one level, but elsewise not particularly accessible. They get some help with housecleaning and heavy lifting in the yard, and my niece lives in an apartment on the property, in exchange for checking in to make sure they're vertical before she leaves for work. They do everything else themselves. My dad still drives, which makes me crazy.

My point (I'm just figuring this out myself) is not that I'm worried about a potentially dangerous living situation, although I am. There are resources available to them, ways to make their home safer, and even, dare I mention it? other residence options they might consider. Believe me, we're working on it. We're working on it. Suggestions along these lines are met with fierce, if not to say rabid, if not to say furious, resistance. They're a couple of stubborn, cranky old... well, never mind. That's not my point.

My point is that gettin' old ain't for wimps. Old age is progressive too, you know. When I think of what my mom and dad face, every day, day in and day out, without complaint (much), I feel like a total whiner. I mean, they're tough! I don't think they make them like that anymore.

But guys, for criminy sake, put a handrail on those steps, willya?

Old Friends, Old Friends

Last week, out of the blue, I heard from an old friend. The sinister people who orchestrate high school reunions -- you know the type -- have been looking through Facebook, tracking down people who were in our high school class. Not that I have any interest in going to a high school reunion; I can't think of anything I'd like to do less. But we were both caught in their net. Jumper and I went to kindergarten together, sometime back in the early 1600s. We were pals through elementary and junior high school, drifted apart in high school, and I hadn't heard from her since. Turns out, for the past 13 years, we've lived about 10 miles from each other.

We spent part of Sunday enjoying a spectacular late summer afternoon in Seattle, trying to catch up on many decades of life happenings. This was enlivened by the dogs' discovery of a huge caterpillar-kind of thing sticking out from underneath the house. I mean huge -- it must've been 6 inches long, maybe an inch in diameter, pale green -- I've never seen anything like it, and the dogs clearly hadn't, either. Ex-biologist that I am, I would've liked to get a closer look at it, but it seemed kind of rude. Scarecrow finally tossed it over the fence. I still wonder what the heck it was. Anyway, Jumper grew up to be exactly the kind of person I would've expected, from the girl I knew. I would have liked her, even if we weren't already friends. I'm looking forward to seeing her again. There are so many things I didn't have time to ask.

Meeting people I haven't seen in a while can be awkward. It's obvious that something is up. I can't stand, or walk, or move my arms, or use my hands. I use a power chair the size of a small subdivision. It's not like you wouldn't notice. If one were to look on the bright side, I suppose it's easy to pick me out of a crowd.

It's hard to suggest something we might do. Meet for lunch? I don't think so. It must be pretty weird, watching someone who has to be fed. My problem, I know, not theirs; but there it is. Meet for drinks?  I dunno. There's something so not-cool about drinking beer, or wine, or single-malt scotch, with a straw. Not that I've ever been any shade of cool, but there it is. Drinks that normally come with straws usually also have skewers of fruit and little paper umbrellas. So not-me.

This is somehow not such a problem with people I'm meeting for the first time. This is who I am, deal with it. It's harder watching people I haven't seen for a while process the fact that I'm not the person they expected me to be. I find myself resorting to the phone (I hate talking on the phone, but at least I sound normal. Well, as normal as I ever did) or the Internet (you can be a dog on the Internet) rather than meeting in person. My problem, I know, not theirs; but there it is.

Still, it was kind of fun talking to a real person, in person. I should think about doing it more often.

60 years? No foolin'?

My brother called last week to remind me that my mom and dad's 60th wedding anniversary is coming up. I live 1200 miles away, won't be there in person, and couldn't suggest any brilliant ways to mark the occasion.

They have an odd relationship, looking at it from the outside, but I guess a marriage that lasts 60 years must have something going for it. Underneath all the grousing and crabbing, and there is a lot of grousing and crabbing, they really do love each other deeply. They've cared for each other through some really scary health problems over the last couple of years. They're tough, the both of them.

Deciding I totally don't understand my parents' marriage got me started thinking about my own family-type situation, which I also don't understand. Scarecrow and I aren't married. We've been together -- let's see -- it would be 21 years this past January, and our daughter is 19, but I hate to rush into things. I don't know what kind of future Scarecrow might've been anticipating. He's not one to talk about stuff like that. But my increasing disability over the last couple of years makes it clear that, if he's with me, it's going to be way different from anything either of us would have guessed. We won't be doing any of the things we used to enjoy doing -- playing music, dancing, traveling. At least, we won't be doing them together. So, if it's still 'we', what will we be doing?

I've spent plenty of time lately thinking about how I'll be spending my time now that I no longer have a day job. I guess we'll want to think about what retirement will look like for us.

I'll put it on my list.

We have an appointment with the nice folks at Social Security tomorrow afternoon, to apply for SSDI. I can no longer put off looking through the packet of stuff they sent. I'm going to do that. Right now. It'll be fun.