Lessons

I’m now making a list of the things I would rather go without than my Internet connection.

Car. Absolutely.

Phone. No problem.

Refrigerator. I know where to find ice and how to use it.

TV. Bah. Don’t even ask. Toss it.

Bed. Give me a blanket and a floor. Also, it’s not like I’ve been sleeping all that much.

Dog. If I could find him a good home…

Water. Questionable, after all my experiences this summer. A toss-up.

Electricity is not on the table, for obvious reasons, and I don’t want to wander down a theoretical road too far, because then we start talking about roofs and walls, but it was a little disturbing how weird I felt yesterday, with only a dribble of connectivity (and I’m not sure what that was all about; sometimes a page would load after 10 minutes, and sometimes I could actually get online with my iPod). It bothered me to feel so dependent, even though I’m sure I’d get used to it, and I’m not completely sure what it was I missed. BESIDES REALLY HAVING TO LEARN NEW SOFTWARE SO I CAN ANSWER QUESTIONS ABOUT IT TOMORROW NIGHT.

So maybe I need to learn to take long breaks…but I don’t think it’s that, really, since there are plenty of hours that I don’t pay attention to the internets. It’s just knowing that it was not available that tweaked me, and after all the events of this summer that seemed to be the one that made me a little crazy.

On the other hand, since I couldn’t do work stuff, we have a really clean kitchen. And cookies? You don’t want to know.

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The Road

I took my first walk in two weeks today, a little loop around the lake, less than 2 miles, but I did. There are obvious reasons I haven’t been walking, and some less than obvious. It’s a routine, it has been for three years, and my life has been a snow globe lately, turned upside down and shaken.

So this is a good thing.

And a good sign. After some scary stuff, the past few days have been a nice progression back to normalcy, even though none of us will ever be quite the same. Perspective is never far, either; while all this medical drama was buzzing along, several people I work with lost their jobs, or had their incomes drastically cut. And then there are the people who surely entered the very same hospital that Julie did, the very same day, and never came home. I do think about this.

I wrote a column this morning, flat and stale as all my writing has been lately, not alarming, just part of the picture, and tried once again to figure out what I think about this phenomenon I witnessed firsthand, electronic compassion, social media as a support group, etc. I’m still not there, and may never be. I guess you could say I had my faith in humanity reassured, but really? That’s not me. I’m not gooey about the goodness of people, I just don’t buy the notion that culture or technology or isolation or whatever has changed us at some basic level. I wasn’t surprised at all by the support and love, just sort of fascinated by the way it can be expressed in 2010.

David Denby wrote a pretty glowing review of “The Social Network” this week in the New Yorker (the movie about Mark Zuckerberg, the face behind Facebook). He seemed impressed with Aaron Sorkin’s screenplay, with an interesting observation:

…Sorkin’s old-fashioned, humanist distaste for electronic friend-making and a world of virtual emotions.

Virtual emotions…hmmm. I’m not seeing it, not in my experience, not on my Facebook, not in my email. I’m not even sure I know what it means. I’ve made plenty of “electronic friends,” none of them virtual to me in the least. Nor do the emotions I saw expressed in emails and comments left in this space, Facebook, etc.

At any rate, I’m grateful, as I keep saying (and will). It meant more than my flat, stale words can express. I thank you all.

We have a road ahead of us, recovery and rehabilitation, but then we’ve been there before. There are no tricks, as far as I’m concerned, from my experience, but support from friends and family goes a long way, and in the end what you do is just keep walking. We will.

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The Sun Also Shines

We had a great day, a watershed even. It was perfect weather, mid-70s and not a cloud, and our patient went in search of vitamin D.

This is in contrast to the past 48 hours, which were scary and almost ended in a late-night trip down I-5 to the ER on Thursday night. Increased swelling, personality changes, all sorts of cognitive problems…probably just part of the process, maybe a result of medication, and maybe some paranoia on my part, although the nurse on the phone sounded pretty alarmed too.

And then Saturday comes, with a good night’s sleep for her and the sun, and everything had changed. No pain, perfectly clear and the same woman I’ve known for all these years. I can’t in good conscience recommend having people cut away in your frontal cortex unless it’s absolutely necessary; too many important things go on there. But it seems that we’ve made it through another bad patch. And that was some nice sun.

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So, this guy married my daughter last summer and I haven’t seen him since. I mean.

This is good news also, then, that our Austin contingent is heading this way for Thanksgiving, tickets bought today, a whole week in the Pacific Northwest. My knives will be sharp and my spatulae…whatever spatulae are supposed to be. Clean, I guess. This will be a Thanksgiving to remember. Especially the thanks part.

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Anyone want to see a craniotomy incision?

I’m hoping that’s not too graphic. Really, it’s amazing to me that it’s so minimal, given the territory. Hard to see, hard to tell, and hair pretty much covers it. Once again, we only need to think that there are worse things, and worse outcomes. There are lots of scars in this here world; this one doesn’t amount to that much when you think of it that way, and that’s pretty much the way I’m thinking about it.

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The Social Network

I’ve been reading the above book. It’s hard to give an opinion yet; my first reaction was that it was written by a talented 15-year-old, but then I can be snotty. I’m still reading.

I’ve been knee deep in social media lately, mostly with writing assignments but also with this great medical adventure, and it’s on my mind. And given the sorry state of my mind, I’m having trouble with coherence.

When I let above mind wander and think about the world as it is, I usually end up focusing on two things. One is that we Americans have a tendency, and always have, to slide toward provincialism if we don’t keep our guard up (and it’s provincial of me to talk only about America, but there you go). It seems easy for us to imagine that everyone else is just like us, shares our values and taste in movies. I run into this all time; there are people who are absolutely baffled by the notion that someone who looks sort of like them and lives in the same school district might have a completely different opinion on something.

The second, though, is a tendency among certain people to see life as a zero-sum game, particularly when it comes to change. A new thing means an old thing dies, that’s it, end of story. I don’t happen to share this worldview.

You can still write a 5-page letter to your mother, you know. You still can. Write it in pencil or crayon, fold it up, lick the envelope if you want and mail it. YOU CAN STILL DO THIS.

Or you can write a long email. Or a short one. Lots of choices.

The other day, in the middle of my long surgery day, I pretty much experienced all forms of human communication aside from sex and mime. I had long, thoughtful conversions with people sitting next to me. I had short conversations with people wishing to impart information to me, and shorter ones with people just offering me support.

I also had short text messages, shorter tweets, longer blog and Facebook comments, and longer emails. And I did the same. I had some time on my hands.

I believe in adjuncts, in other words, lots of tools to help in particular situations. You don’t have to live on your cell phone; it’ll come in handy in your glove box sometimes, though. And feel free to dismiss Facebook as a fad for fools and kids, but 1 out of 12 people have a Facebook account. Not 1 out of 12 Americans, either; I’m talking half a billion earthlings, earthling. It’s one way we communicate, and it’s a great way sometimes. There are other great ways.

My experience last week wasn’t unique or unheard of, but it sure was 21st century. Had this all happened in 1980, say, the vast majority of my friends (and Julie’s friends) would have heard about it via Christmas card, maybe. And I still would have been comforted by close friends and caring hospital volunteers in the waiting room, but look at what happened.

There were at least 50 people waiting with me, all told (I counted). Going about their lives but with part of their brains focused on me and mine. I can overuse, maybe, the word sustained but not in this case. I was sustained.

It made me think, and say, only half joking, that I should write a primer on social media and sickness. Like this:

Just off the top of my head; I welcome suggestions.

But then, being a good anti-provincialist, I can’t really assume my situation will be similar to yours. I’m also not real keen on giving advice. Having had some bad experiences.

So I’ll just say this: I got text messages all day long, starting before we arrived at the hospital. Text messages felt like someone walked into the room, squeezed my hand or shoulder, said “I’ll be right around the corner,” and left looking over their shoulder.

Facebook and blog comments, on the other hand, evoked an image of someone going about their business, maybe working at their desk, all the time with a picture of my wife in their peripheral vision. They look at it from time to time, and stop.

And I got emails, the best of which were like this:
“I’m ______ (a phone call, 5 minutes, 30 minutes, a quick flight) away. Call me and I’ll be there. Whatever you need. I’ll be THERE.

I got several like that. Simple, direct. I’ll be there.

The hardest part? People would ask questions. Understandably. I would ask questions too. But they tended to wear me out, particularly on Facebook. Even if I didn’t answer them, and usually I didn’t, they’d hang there, waiting. What hospital is she in? When’s she coming home? How long have you known? As I say, understandable. But hard, after a long day at the hospital, to see them, and to know that the answers were around. Just my two cents, then. It can be tiring.

But overall, it was an incredible experience, knowing people knew, knowing they were thinking of us, knowing they cared and were concerned, and shared my waiting, and share in her recovery. For me, I’ll know in the future what I’ll do if someone I know, even slightly, has a similar situation. I’ll get all provincial, then, put myself in their shoes, empathize and say so, the best way I can and as often as I can, knowing that it matters, it helps, it did.

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A Week Now

I have things on my mind, things that would be fun to share, but I’m feeling sort of leaden at the moment, prose-wise. I keep deleting rambling posts, waiting for some clarity.

But this is sort of fun, at least to me, maybe to other Seattle folks. I mentioned that the hospital Julie was in had a history for us; it was my first job, way back when, in 1983. I worked there for 2-1/2 years, from our first months in Seattle until Beth was over a year old, and it held lots of reverb for me during that long Wednesday a week ago. Lots of memories, although it’s very different.

The parking garage isn’t, though. It’s still connected to the hospital via a sky bridge, and from the top looks westward toward downtown (actually the First Hill section of Seattle, sometimes called Pill Hill, since the hospitals and clinics are all clustered there). It used to be a favorite view, getting off work and walking out to the car, and I remembered. I took a picture last week with my phone, even.

And a friend commented on that photo, something about the skyline looking different since she’d last seen it, and something about that kept bouncing around my unfocused brain. Until I finally figured it out.

When Beth was about 3 months old, my brother came to visit. One day, we took my bulky video camera out on the town, wandering, to Volunteer Park and Seattle Center, but first we had to stop at the hospital to pick up my paycheck. While I went inside, he played around with my camera, shooting video from the top of the parking garage.

So I found that old footage, which I’d put on a DVD a while back but not before the tape had aged 20-plus years. I managed to snag a screen capture, not great but close enough to get a before-and-after effect. Some of the perspective is off, the angle is slightly different, and the quality sucks, but it is what it is.

Again, it probably won’t mean much unless you have memories of that particular view from the mid-80s, but while I’m waiting for inspiration I might as well post pictures. So the first is from 1985, the second from last week. Change happens.

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The Seventh Day

There’s probably a graph of convalescence out there, swooping levels of pain and swelling and everything else. Maybe it crests on the sixth postop day and plummets on the seventh. I’m just saying. IT WOULD HAVE BEEN NICE TO KNOW THIS.

So yesterday was nervous, pain hard to control, sort of dark, wondering about all sorts of things you wonder about, imagining sudden trips to the ER.

Today? All smiles. Giggly even. Swelling nearly gone, vision maybe even improved, energy. Good sleep. Call it normal recovery, then, whatever, glad to see it. This has been a week.

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The Home Front

I can’t think of the word or phrase. “Independent” sounds noble and American, but philosophically I’m opposed; I firmly believe that it takes a village to mow a lawn, or at least to make frowny faces until I mow mine. I like being dependent, sometimes.

“Self-sufficient” is another candidate, but that also has connotations to deal with, images of generating my own electricity and having a workshop down in the basement where I make water and stuff. Not really me.

So we’ve had to settle for acasseroleism (a handy word that you can take apart and make other, more interesting words with). “Don’t bring us casseroles,” I’ve told to, I’m guessing, around a million people in the last week. “We won’t eat them.”

People get their own frowny faces on when I say that.

But it’s true. Not that we have anything against casseroles; casseroles are cool. But John’s an incredibly picky, rigid and bland eater and Julie is still at the stage where she’s taking small portions at a time. And cooking is a stress reliever for me, like washing dishes or pulling weeds. We’re good in the food situation.

People want to help, though. I appreciate it; I’m just too tired to come up with things for them to do. Cards are nice, I tell them. I run out of ideas after that.

******

Funny how it rarely occurs to us that we don’t have family anywhere near. It’s been so many years, it just seems normal. Still, it feels strange to have a situation like this and be so far away from relatives.

On the other hand, we’re networked so extensively into communities of churches, universities, neighbors, former neighbors, old friends, new friends …an embarrassment of riches (and we know several people named Rich; one came to visit her in the hospital).

There’s nothing I can do about this; it’s just an awareness that family is important, and friends fill in the gaps, and everyone manages, and casseroles have their place, I’m sure of it, just not here. Trying to be polite.

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No News Is…

Calm here. I know some of you are checking in; I appreciate it. We’ve got the girl home, she’s resting, wanders through some emails, works some crossword puzzles, eats some soup, sleeps. About what you’d expect.

John is calm too, which is another story I haven’t noted. Some balance has been restored and now he’s Mr. Helpful, which is a change. Stress is funny, and his stress in particular, so this is good.

And I have a chance to breathe, today, finally. Time to make some bread, maybe some chowder, definitely some cookies. I can’t fix the world, I can’t quiet my neighbors, I can’t seem to soothe the dog and I know I can’t do brain surgery, but I can bake, dammit. I knew I’d be good for something one of these days.

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In Lieu Of Flowers

My mom has already become my hard copy archivist; if she doesn’t have a file folder labeled “Julie’s Surgery” with all the Facebook comments and blog posts, she probably will soon.

And as soon as I feel creative, I need to gather them all together in a fun way, sort of a Get Well Soon card.

That is a joke, of course. I can’t conceive of feeling creative, or energized, or restless or rested. I’m pretty much taking the feelings one at a time right now.

Latest (before I forget): Maybe home tomorrow (Saturday). She’s doing really well, remarkably well. She read some emails, even posted a status update on Facebook, although I’m not sure how much love and support from everyone in the online world she’s comprehended yet. She understands priorities pretty well; all things in good time.

Mom is available via email, Facebook and this blog; she’s also one of the few people I called during the surgery, reserving that old-fashioned communication for my need to hear a voice. She doesn’t do text messaging, since her cell is of the emergency variety only.

My in-laws, on the other hand, only do telephone.

There are those of you who only hear from me via this blog. There are a couple of people who are only aware of this via my almost-never-used Twitter account.

There are a few people who will only note something from me on Facebook, mixed in with everyone else and sometimes only when they think to check, so there have been some surprises there.

And some people I’ve had to place in a special email group, since they’ll get that but maybe only check it once a day.

So I could make a chart if, again, I had the brain power to do that, which I don’t. There’d be a lot of overlap, but also discrete groups of people and individuals who would like to know, need to know, are of great comfort to me when they know, and this has all kept me busy and made me batshit crazy, scared I’m going to forget. But, again, it’s all been worth it.

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Speaking of me.

One of my oldest and dearest friends sent me a message last night, reminding me that I have my own priorities. Nothing I’ve gone through and felt has been anything short of cliché, expected and completely conventional. Lack of focus, disorientation, poor sleep, not eating, eating all at once and late at night. Spelling errors, you name it.

And I absolutely get that I have to be on my grownup game, that I need to stay on the ball and that I need to ask for help. Absolutely.

There are no surprises, not yet and not expected. There is always a price; I know that all that stuff I’ve been shoving in the closet will have be sorted out, eventually. I had a glimpse only once, right about 12:15pm on Wednesday, when I checked the time and thought, OK, surgery has begun. I’ve visualized surgeries for decades now, having spent a fair amount of time around records and reading reports. I know the anatomy, I know the procedures, I know the instruments and the techniques, pretty well actually. I knew how it would go, I saw it in my mind, saw the incision being made in my wife’s skull, and for a few seconds I got a glimpse of the inside of that closet. For a few seconds I thought I was going to be a mildly embarrassing middle-aged man losing it in the waiting area of a major medical center, and then I set that aside.

But that stuff needs to see some sunlight, sooner than later. Got that.

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These are my friends.

Also? That is my foot.

I was actually trying to snap a picture of this hilarious old guy who apparently went out into his yard, found some interesting-looking mushrooms, ate them, and then decided to dress for the hospital. My eyes hurt.

But I couldn’t get a decent angle, so I grabbed this picture of Waiting. Both of these people know all about it, by nature and by vocation. Both have been seminary trained in the spiritual side of life, and I suspect neither of them would think that a little Psalm singing or verse snatching would be appropriate or even helpful in a situation like this. What they are good at is waiting, being present in the moment, holding me for hours and hours and watching, sometimes with smiles, as I decompensated and compensated over and over. I do believe Scott there on the left was actually writing his sermon for this Sunday. Jan was reading a paperback. And both of them, I guarantee you, were muting their own love and friendship for my wife in order to watch over her husband. There are no words for this kind of love, this ordinary holiness, this service of compassion.

You really should have seen that old guy, though. Checks and stripes all the way down.

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