Category: vocation postcards

Effort & Illness: The Confusing Habits of Sick People

Since I surround myself with people who know better, no one’s yet given me the dreaded words You don’t look sick. Even people who do look sick often don’t look as bad as they feel*.  As Jen Fulwiler explained it last year:

I feel self-conscious that I’ve been doing better, and have no visible symptoms of being ill. . . . I worry that the folks dropping off the food are starting to suspect this is some kind of scam. The other day a super sweet lady from the parish came by with a steaming gourmet dinner for our entire family, complete with appetizers and dessert. I had just gotten back from a doctor’s appointment so I was dressed up and wearing makeup; I’d been resting most of the day so I was unusually energetic. She seemed tired from having worked so hard to cook for our entire family in addition to her own, and I used my Neurotic ESP to determine that she was wondering why I wasn’t cooking for her.

I told Joe that I should get some crutches for when I answer the door for people delivering meals, as a symbolic gesture to assure them that their efforts were not wasted. He looked at me like I was insane, and pointed out the obvious fact that my problem is with my lungs and that I would have no use for crutches under any circumstances. I said that I know, but they sell them at the grocery store, and I didn’t know where to get my hands on a ventilator — and, again, it’s all for symbolism anyway. He backed away from me slowly and went to pour himself a large glass of wine.

Yes.  This. I put a short section in my catechist book on invisible disabilities, because it’s something that comes up in religious ed more often than you’d think.  Mostly among catechists, but among students as well.  That one chapter is the one I get the most thank you letters about.

You can be seriously ill without being 100% incapacitated.

It’s pretty rare for someone to be completely felled in a single blow.  This causes confusion, because you see people wandering WalMart who look like they’re going to collapse any second now.  So if your sick person still has good balance and coordination, and manages to answer the phone in a cheerful manner, you think, “Must not be that sick.  There are people at WalMart who look much, much worse.”

The people at WalMart might be worse.  But that doesn’t cause the sick person to be less sick.

Some people are good at putting on.

I knew a lady once who would answer the phone cheerfully even if you woke her up at 4AM.  It wasn’t that she wanted you to call then.  She just had excessively good phone manners.  And thus the Perceived Illness Paradox: Some people complain a lot, other people don’t.  Some people are good at masking their symptoms, other people aren’t.  Some people are good at coming up with clever work-arounds that keep them high-functioning, other people aren’t.  You really can’t judge how someone feels inside by how they’re acting outside.

Rest makes a difference.

Anyone who races knows you manage your training schedule so that you peak when it counts.  There are days when you can ride hard and fast, no problem, and days when you can’t.  Depends on how much sleep you got.  What you did the day before.  What you did the week before.

Illness doesn’t change that, it just changes the scale.

Figuring out an unpredictable body is exhausting.

Normal people spend most of their time operating well within the margins of their abilities.  If you knew you had to ride 100 miles on your bike sometime soon, you’d have to plan ahead to make sure you could do it.  You’d strategize how to make it happen with as little trouble as possible.  But you wouldn’t feel the least bit of guilt if you misjudged: “Wow, that was easier than I thought it would be, why did I make such a big deal out of it?”  Or conversely, “I knew it would be hard, but I didn’t realize how hard!”

Sick people have to figure out the 100-mile ride about everything they do . . . and then get in trouble if they misjudge.  “Why’d you spend half an hour answering e-mails? You should have rested up so you could talk to your mother on the phone!”  Or “Why’d you put off that phone call, look, you talked for twenty minutes, no problem!”

It’ll make you bonkers.  You hear the mail truck go by, and you think to yourself, “Should I walk to the mailbox?  Or get a kid to do it for me?  What’s the best thing here? How will this decision impact my family life?”

What you like is easier than what you don’t like.

Sick people are confusing because their gifts don’t go away.  Okay, if your gift is watching football on TV, everyone will think, “Look he spends all day watching football games, he must be sick.”  But what is hard for you is effortless for someone else. What is easy — even fun — for you is difficult for someone else.  It’s not about the sheer physical energy required.  It’s the mental energy.

So my son might say to my daughter, “I see you have plenty of time for scrapbooking.  Why don’t you research computer components?  What’s wrong with you?  Just lazy, I see.”  And she’d point out to him that he received a photo album for Christmas, and he’s supposed to put his photos in it.  He had time to build a computer, and even more time for playing computer games . . . why so lazy with the photo album?

Everything costs.

There’s service to your fellow man, and then there’s letting your fellow man turn you into his servant. We live in a hyper-critical age.  What you wear, what you eat, what your hobbies are, how you spend your money — all of it is subject to the approval of seven billion self-appointed guardians.  That doesn’t change when you’re sick, it just becomes harder to please the seven billion, because you’ve got less to please them with.

Normal people might say, for example, “Is it worth it for me to give up an hour of my time to visit my crotchety uncle who invited me for dinner tonight?”  When you’re sick the question becomes, “Is it worth it for me to set aside an entire afternoon to rest, and give up getting any chores done, at all, the entire day, so that I can physically pull off the feat of visiting my uncle for an hour?”

In normal life, a dysfunctional friend is the one who makes inordinate demands on your time and energy.  In sick life, everything is an inordinate demand.  But some of those demands are very gratifying, so you organize your life to make them possible. The chief sin of sick people, I suspect, is in gratifying too many whims.

Order in all things.

Sick people are confusing because of the scale change.  With so little room for covering-over, it becomes obvious what the sick person values most.  It becomes obvious where the conflicts lie, because there’s no margin where you can quick slip in a nod towards other people’s priorities.  As in academia, the rivalries can be so bitter because the stakes are so small.  “Just a few minutes of your time” is now also, “all your time”.  How are you going to spend all that time? The way you want?  The way I want? Something in between?

The Darwins have a novena started on just this question.

*Sometimes things look so bad that you assume the other way, “It’s not as bad as it looks, I hope?”  To which I’ll observe: A badly scraped knee looks horrible.  But it feels even worse.

Knowing vs. Really Knowing

Sunday morning list of things we pretty much knew, but now we’re absolutely certain:

1. I was not made for wedding processions.  Barring strict orders otherwise, I’ve given it up.  Walk at a decent clip, cough cough cough, and sleep half the day.  Much better.  Moderation is overrated.

2.Properly-deployed Extraordinary Ministers of the Eucharist *rock*.  You who are prone to getting your socks in a wad over Speed Communion, in your Therese-like practice of self-control, resist the urge to make snarky comments to your pastor about how he’s doing it wrong.  The handy thing about parishes that unleash a fleet of EME’s at every Mass is that you know exactly whom to call when you’ve got a sick person at home.  So maybe your pastor’s doing it right after all.

3. Go to daily Mass when you can, and you’ll have it to draw upon when you can’t.  Nothing beats the silence of a good weekday Mass.  Grab one as often as you’re able, and that silence banks up in your soul.  It doesn’t go away.  Go when you can.  When you can, go.

(#3 I didn’t actually know.  It’s a pleasant surprise.)

A Feast Day Gift for You & Your Friends

If you are looking for some Petrine thoughts out of me today, take a look at the workbook I put together for today’s CCW retreat.  It’s conveniently stored on this page here on the blog, and this is the direct link to the PDF. It is not for sale, but you may use it and reuse it and pass it around.

Please keep the retreat folks in prayer.  Might I observe that the Joyful Mysteries are perfect for this sort of occasion?  Those of you who won’t see this request until after the retreat is over, consider yourself part of the post-retreat-letdown-prevention wing of the prayer group. Thanks!

No-motion, slow-motion, and . . .

. . . I dunno. Fill in your own rhyme.

Rebecca Hamilton writes here about the importance, to your health, of not sitting around.  She mentions the research, and also her personal experience with RA that bears it out.  The clincher in the health news: It’s not about just the “exercise” component of your day, where you are doing something all active-like and you count it as physical fitness.  Think of that “30 Minutes 5 Days a Week”, or whatever the source of your choice has been telling you over the past couple decades.

What also matters is how you spend the many hours of the day when you aren’t “exercising”.  (Hint: Writing as a career is hazardous to your health. So is accounting.  Rearing children, in contrast, offers very many health benefits, and not just for keeping vocal chords warm.)

Now I never doubted this.  In fact I was rather depending on Putting Away Laundry as a health-preserving scheme.  But interestingly, the vexing illness has given me some powerful evidence on the biological difference between Sitting Around and Not Sitting around, but from the other side of the coin.

First let’s review Life as Normal People Know It.  Call it Jen’s Life in January 2014:

  1. Sitting around = feels like no effort.  Big surprise.
  2. Pottering about = feels like no effort.  As it should be.
  3. Going for a pleasant walk = um, pleasant.  No big deal.  Good for you.  As it should be.
  4. Going for a brisk walk = exercise.  Not that intense, but it counts, right?
  5. Throw in some big hills,  some running, or switch it out and do some strength training = Exercise exercise.
  6. Sprint, haul really heavy things around the yard fast, etc. = intense effort.  Enjoyable.

The thing is, if you’re a healthy person, #1-3 feel about the same.  You’d be bored if you *just* sat, but if your brain is engaged in something, you don’t particularly notice that your body is doing something radically different in #1 than it is in #2 or #3.

Ha!  Let me tell you, is it ever.

Here’s my new scale, call it the February 2014 Vexing Illness Scale:

  1. Sitting or laying reclined, body fully supported, such as in a Lazy Boy: No effort.  Can do that awake all day and half the night –> Insomnia inducing, it takes so little effort, even for the vexingly ill person.
  2. Sitting upright but in a pretty good chair: No problem if rested, palpable effort if tired.
  3. Sitting up, unsupported (bench, stool, etc.): No problem if really really rested, no-go if tired.
  4. Pottering about — walking at Wedding Procession Pace: No problem if rested; if tired, induces desperate desire to go lay down and shut eyes ASAP.
  5. Walking normally: Bad idea.  Feels great at first, but the coughing kicks in after a bit, and you pay for it later.  For hours.
  6. Walking briskly: Just no.  Just. No.

Note that #1-5 *all feel about the same* to a normal person.  You probably aren’t aware that your body is working noticeably more if it’s sitting on one of these instead of one one of these.  I am here to tell you: Yes! There is a big difference!

And pottering about the garden, or dusting the nick-knacks?  Adds another level.  Fetching the mail, feeding the cat, sweeping the kitchen, wandering down to the playground . . . your body is doing something radically, radically different than what it does while sitting on the couch watching TV.

 

****

Anyway, in happy news, I figured out that if I’m walking like a normal person, I have to just stop, pretend there’s a wedding director giving me the evil eye, and resume at processional-pace.  So far it works, anyway.

****

Note: Any inference on your part that I actually dust nick-knacks is your own fault. That was a purely hypothetical example.

 

 

The Up-Down Lifestyle

In the past 24 hours I’ve . . .

  1. Learned how to play pick-up sticks.
  2. Lost all my Words with Friends games.  Literally and figuratively literally.  I can’t find the link anymore.  Facebook Fail.
  3. Discovered that I score just as well at Mancala if I randomly pick a handful of stones when it’s my turn, while checking e-mail, as I do if I concentrate and try to win.  Only I enjoy it much more.
  4. Did Mrs. Darwin’s Immediate Book Meme.  Answers posted at the blorg bookshelf.
  5. Figured out that I have no clue how to pace myself.

#5 We’ve always known, haven’t we?  It’s just more dramatic now. I’m thrilled to be off the mandatory complete rest thing, because: Insomnia.  But what seems to me like a very light activity level really isn’t.  Serious intervals-action going on: When I’m up, I’m more up than I’ve been in ten days.  But a couple hours of acting vaguely like a normal person, and I’m completely wiped out. Brain. Body. All of it gone.

I’m sure such a thing as a ‘happy medium’ exists.  I’ve never actually experienced it, but I’ve heard about it.  Okay, strictly speaking I’m not so sure. Maybe it’s mythical.

Time to Order Chocoloate

PSA: My son reminds all you southern-North-American-types that it is time to make your last chocolate order before melting-season is upon us. Don’t let nasty corn-syrup laden, blood-tinged bunnies into your Easter basket.  Invest now, multiply your Lenten penances by not eating the peanut butter chocolate bars until Easter Sunday (goes great with bacon!), and get a minute out of purgatory for every dollar you spend  invest in duct tape for an assist when the flesh is weak.

Seriously.  The Equal Exchange folks put out good stuff.  You can set up an individual or a wholesale account (different pricing, but a higher threshold for free shipping if you order wholesale), and yes your private buying co-op of just you and your friends / family qualifies for the wholesale rate, if you do in fact eat that much chocolate among yourselves.  Feel free to link to other fair-trade suppliers in the combox.

***

Speaking of chocolate, for those who are following the vexing situation, here’s today’s FB update:

Details from yesterday, per Jon — not a lot to add, but some good spin. TEE was looking (in particular) for evidence of shunt in my atrial septum, which it did not find, nor anything else suspicious. Let us pause right now to observe that Dr. W *came in on a vacation day* to do that. Serious point-accumulation there.

–> Afterwards, he said that he sometimes runs into this — patients with definite symptoms but no obvious explanation for them. Sometimes it clears up on its own. (ER Doc pointed out last weekend that sometimes the tests don’t come back positive for a while after the symptoms show, too.)

And since we’ve ruled out everything imminently life-threatening, he proposes we take 10 days to attempt “rehab”, that is, Jen-directed gradual increase in activity level, and see how things go.

If symptoms persist, the next thing to do is refer me out to someone who investigates really nutso inexplicable stuff.

Day 1 Rehab report: Um, yeah.  Anyway.  It’s nice to be allowed to do stuff.  We’re a long, long ways from walking and talking on the phone at the same time, kids.  But I’m allowed to clean my desk, not a moment too soon.  You who are waiting on paper-based correspondence from me, there’s a light at the back of that cave.

Time for a New Novena: What’s Vexing You?

The Nine Annoying Things novena has been very successful, but we need to take it up a notch.  TEE was normal (for me – nothing there that should be causing my problems, I’m told), and we’re waiting to hear back on the labs measuring arterial blood gases.  Follow-up appointment is on the 26th, so that gives you a perfect nine days of vexation between now and then. 

Because this situation is more and more vexing by the moment.

Which means we need to invoke: Mary Untier of Knots.  (Warning: If you click the link, it plays music.  Turn your volume down first.  I just went with the first link I found.  Sorry guys. St. Google could help you find a different link if you aren’t already familiar with this particular devotion.)

Advanced pray-ers, have at with rosaries and chaplets and everything else in your arsenal.  Junior team, here’s how the Nine Vexations work:

  • Identify something vexing. An unsolvable problem.  A thorny situation.  Anything that’s too big for you.
  • Invoke the help of Mary Untier of Knots for your cause, and offer up your vexation for mine.  She’s Mary. She can help more than one person at a time.
  • Repeat nine times.  If your life is vexatious, you might have nine different vexations.  If your life is particularly tranquil, you might just have to pray nine times over for someone else’s vexation.  Any kind of mathematical arrangement is fine, and in any case it isn’t a math quiz.
  • Just like the Nine Annoying Things, you’re allowed to offer up your vexations retroactively.  We don’t do scrupling around this castle.

Thanks everyone!  I haven’t dropped dead and I’m still sane, mostly, so we know your prayers are being heard.

On Faith: Sticking the Corners

The other day I compared the infernal Circle of Pulmonology to bicycle racing, and intentionally communicated one thing — pulmonologists, take care of your immortal souls!, or something like that — and realized I’d also let slip another: I was not a particularly *good* cyclist.  But I liked it.  And so, as with most things I like, I managed to get myself firmly into the middle of the pack by sheer enthusiasm and willpower.

I was so reliably middle-of-the-pack on the road bike that you could literally count the size of the women’s field for the day’s race, divide by two, and know what place I’d come in.  I placed 6th overall one year in the NC-SC State Championship Road Race because 12 women entered.  I medaled — bronze — for SC, because of the field of 12, six were from SC.  It always, always worked that way. Except one time.

The one time was a criterium in downtown Greenville. In a crit, you go round and round a short circuit for a lot of laps.  A typical ladies’ crit would take about half an hour, max, and because the course is short, in a small field of women at a local race, the pack tends to stay tight.  All of us average riders would just hang on and suck wheel, and the better ladies would pull us long grudgingly because they couldn’t quite breakaway. The race would be won at the sprint.

So this course in Greenville was unusually hilly, and the last corner was nuts, as road cyclists see it.  You descended fast, took a sharp left, and then sprinted back up hill again. The finish line was right at the top as you came out of that corner.  Without the corner, the sprint would have begun at the top of the downhill — pick up as much momentum as possible, to get you back up that last hill and over the line.

But because of that corner, you could only go as fast on the downhill as you were willing to move through that corner.  The course was clean enough — no debris or gravel or anything — but too much speed and you’d wipe out on that last turn.  And if you don’t make the turn, the faster you’re going, the worse the crash is going to be.

So Jon and a friend and I rode the course together before the race.  Big question: How fast can you take that turn?  Pretty fast, as it happens. I mountain biked before I road biked, so my bike handling skills were good.  Rock climbing + rugby + scary exposed gravely mountain biking with nutso turns . . . these things prepare you for a crit. Which is something of a combination of all three, accelerated.

And thus a strategy emerged: Sit in the pack for the race, and see how the other ladies take that corner.  And if they’re slow . . . go wide and get ahead of the pack on that final downhill, scream through that turn, and be back up the hill again.

But you can’t waffle.  Once you go wide, you’re committed.  The only way out is through that corner. Period.

This is what faith is.  Sticking that corner.  You know how it’s supposed to go. Everything up until this point in your life has given you reason to believe it’s going to work.  Maybe it’s a stretch, or maybe you’ve got good solid evidence.  But you won’t really know until it’s done. Until you’ve turned that corner, you haven’t turned that corner.

So we got into the bell lap. I hung in the pack, but worked my way forward a bit.  When we got to the top of the last downhill, I went wide and picked up speed.  No one else followed.  You feel a lot crazy when you do something that *should* be the obvious strategy, and no one else follows.

By the time I reached the bottom of the hill with the sharp left, I was all by myself.  No one was on my wheel.  No one was even close.

The only way out is through that corner. Or else through the crowd + signs + buildings. Nice big crowd down there, because everyone always gathers where the crash is going to be.

What do you do?  You stick that corner.

Do it like you mean it, and find out if you were right.

So that’s what I did.

And I’m not dead or anything, so it worked.

Jesus and the Laundry Fairy

Two weeks ago I was still ostensibly the person responsible for doing laundry, though I’ll allow that a party of alpinists had contacted us about permits for ascending Mt. Foldmore.  But let’s harken back to the days of old, when it sometimes happened that a person could toss his clothes into the laundry hamper, and a few days later find those clothes clean, and folded, and waiting in the drawer or closet for their next use.

There’s was something of cycle to it, though, and often the sock and underwear drawers would get perilously empty.  And then one day, just when things had gotten very grim, a certain SuperHusband would wake up and discover his drawers were restocked, and he would proclaim, “Behold! The Laundry Fairy has come!”

And I would remind him that there is no Laundry Fairy. That was your wife who did that for you, thank you very much.

***

This morning’s Gospel is one of those miraculous feedings of the crowds.  (Mark 8:1-10).  What caught my eye today wasn’t the Jesus part, it was the people part.  Our Lord observes, “They’ve been with me three days now, and have nothing to eat.  If I send them away hungry to their homes, they will collapse on the way, for they have come a great distance.”  The disciples up the stakes: “Where can anyone get enough bread to satisfy them, here in this deserted place?”

Those are the miracle conditions.  You’ve stuck around with the Jesus Person until you’ve run out of food and have no way of getting more.  You didn’t bail even as you approached the point of no return.

You’ve let yourself get desperate.  Empty-handed.  No way to make it on your own.

–> There’s an aid to faith here, by the way, if you can stick through the tempting part, the getting-out-while-you-still-can.  Once your case is hopeless, there’s really not much point in trying to turn elsewhere.  Makes it easier to stick the final corners.

And that’s when the miracle shows up.  Not before.  If there’s something consistent in the Gospels, it’s that desperation.  Joyful, hopeful?  Sometimes, yes.  But unequivocal: Jesus isn’t one more tool in the portfolio. It’s got to come down to Him being the only way.

(And yeah: You’re left as your only hope with Someone who’s idea of goodness involves self-sacrifice and an eternal outside-of-time-frame.  If what you want is a patched-up Old Earth, you’re fresh out of luck.  That’s not what He does.  Not how He does it.)

Of course God sends us thousands of natural helps every day as well.  Our very existence — in this life or the next one — is only by virtue of Him keeping us here.  But either way, whether in the day-to-day miracle of ordinary life, or the big moments of divine intervention on this side of the grave or the other, there’s a consistent theme: No Laundry Fairy.  That was Me, thank you very much.

****

Back to practical stuff: SuperHusband’s taken over the mom-jobs like groceries and meals and laundry, but in a pared-back way that makes it not so overwhelming.  Our friends and family are totally showing up to do all the extras, like getting kids to activities, or whipping out dinner when we’re way late getting home from doctors appointments. I had three different people offer to step in and get the girls their valentine supplies. All that makes the load on Jon much, much lighter.

But something specifically laundry-related that we did was to give me a basket in the bedroom where my clean laundry lives. So no one ever has to put my laundry away in drawers and closets, only to have to pull it back out again. The nice thing about my particular state of decrepitude is that it isn’t fashion-intensive*. A pair of jeans to wear and one to wash.  Ditto on PJ’s.  Underwear, socks, a pile of t-shirts, a jacket.  That’s it.  You can store all that in a single laundry basket, no problem. None of it really needs to be ironed.  Works great.

*In contrast, in normal life on any given day I might have:

  • Work clothes for doing stuff in the yard
  • Normal less-grungy clothes
  • Church clothes
  • Possibly something business-y, or business-casual.
  • Usually not workout clothes, because normal stuff works for that, but maybe yes, depending.

Completely different game.

And as long as we’re playing the gratitude game, you know whom I really appreciate? The people who’ve picked up slack for me on stuff I could do, but they could do instead.  It is remarkable how much fortitude gets consumed on accomplishing very very little.  I’m massively thankful for the slack I’ve been cut in a few places.  Pure luxury.

Curiouser and curiouser.

Ruled out pulmonary embolisms — none of those.  That’s always nice.  Echo looked . . . okay.  As in, nothing there, on the face of it, that ought to be causing anything this dramatic.  TEE on Monday to confirm that.

Summary of conversation with cardiologist:

Dr: “Well, it looks like you’re fine then . . .”

US: “Not Fine!”

Dr.: “Stable, anyway . . .”

US: “Um, no, not exactly . . .”

Dr.: “Well, I don’t see anything that could be causing this . . .”

US: “So there’s nothing else that could be causing these symptoms?”

Dr.:”Well, nothing common.”

US: “Something rare?”

Dr.: “Oh, I’m sure.  Lots of rare things.”

***

So Monday we test his knowledge of rare things.

 

(BTW: I like this guy.  I asked for dogged, and he seemed willing to be that.)