meyerweb.com

Skip to: site navigation/presentation
Skip to: Thoughts From Eric

Bill Killed

Despite today being a U.S. holiday (so no mail delivery today, folks!), both my insurer’s customer care department and the hospital’s billing department were open, and I was able to confirm that:

  1. There should be no patient responsibility for the bill in question, and;
  2. The hospital sent the bill in error, and it should be disregarded.

My guess, which I couldn’t get officially confirmed, is that because the bill was for a claim that had been under review for a couple of months, some bit got inadvertently flipped during the review process, making the system think that we were responsible for the bills instead of our insurer.  I’ve worked with computers and people long enough to have that feel like a plausible scenario.

So that’s that, it would seem.  Of course, if I get another such bill, I need to call the hospital back and ask them what’s up, but at least now I have confirmation that my plan prohibits “balance billing”, as it’s called.  (And thanks to commenter dj for that information!)  So if I get a similar bill in the future—that is, one that says I’m responsible for charges beyond co-pays and the like—I can bypass the insurer and just call the hospital.  Not that I have a burning need to bypass them; I actually really like my insurer.  Their customer service people are knowledgeable and friendly, and their headquarters is right downtown so I could drop by in person, if I ever felt the need.

I’m lucky, because I can afford to have health insurance, and far more lucky that I have access to a group plan through COSE that takes care of so much of the cost of preserving Rebecca’s health.  (I’ve worked hard, yes, but I’ve also been incredibly lucky.  The two are not mutually exclusive.)  If the biggest cost I have to pay is the time it takes to sort out the occasional billing snafu, it will be one of the first things I list at the Thanksgiving table this November, and every November to come.

Kill Bill

Sometimes, it feels like the whole system is stacked against you and your peace of mind.  (Some would say that’s because it is.)

For example, this evening after dinner I opened up the mail.  One of the envelopes was clearly a hospital bill.  That’s not unusual, despite our having very good insurance, because there are co-pays and so forth.  Even if you regularly go see a specialist who is managing your radiation therapy, say, that’s an office visit.  Co-pay.  So we’re used to getting bills for $30 or $75 or whatever.

Anyway, I opened this one up and it took me a few seconds to find the amount due, because I thought it was yet another opaque identification number and my eyes kept skipping over it.  Once I finally managed to focus on the right spot, using the text labels as a guide, I confirmed that it said we owed the hospital $122,519.95.

Yeah.

Before anyone rushes off to set up a fundraising campaign, let me explain that I believe this is a billing error, and we won’t actually have to pay it.  You see, I was able to track down two entries on my most recent benefits statement from our insurance company that directly relate to this bill.  For a collection of procedures and treatments, the hospital had billed the insurance company a total of $350,057.01.  (Which is a little more than a fifth of the total ‘retail’ cost of treatment to date, as it happens.)  The insurance company indicated that the provider had accepted $227,537.06 as payment in full, and that we were responsible for $0.00.  The difference between the billed (retail) cost and the accepted cost is, surprise surprise, $122,519.95.

So this is most likely some sort of coding error at the hospital’s billing department, and once I talk to them, it’ll be cancelled.  I HOPE.  Because I really would dislike being erroneously sent to collections for a six-figure sum, and my credit rating would probably hate it too.

This has of course added to my stress, because even the faint prospect of having to cough up $122,519.95 is worrisome, and the possibility of being sent to collections due to someone’s screw-up is even more worrisome.  And I can’t even get started on dealing with it until Tuesday morning, because the billing department has very white-collar hours and Monday is President’s Day.  It’s not going to drive me bat-guano crazy, but it is going to annoy me, having that very large figure sit there, unaddressed, for three days.  Three days out of nine, by the way: the due date on the bill is February 23rd.

Oh, but—and this is actually the part where my mouth twisted into an ugly line—if the bill is paid within 30 days of receipt, it qualifies for a 20% “prompt pay” discount.  Because hey, we say it’s due by such-and-so date, but if you pay by a date later than that but still soon, we’ll only make you pay $98,015.96!  Such a bargain!  Act now, before this amazing deal is history!  Because if we can entice you into quickly paying us money that’s not actually owed, we can take our sweet, sweet time giving it back to you when it turns out the bill was wrong.

Assuming it’s wrong, that is.

So come Tuesday morning, I have to call the hospital’s billing department to see if they agree with my assessment and can clear everything up, and if they don’t then I call the advocate at my insurer to see if they can help me out, and probably have to fax document to one or both places, and generally burn time I don’t have to deal with stress I don’t need.  Because why not add more stress to the situation?  It’s not like dealing with potentially life-threatening pediatric cancer wasn’t stressful enough, heavens no.  Why not add the specter of credit ruination and/or bankruptcy to the proceedings?  You know, for the lulz.

Yes, if it turns out that I actually do have to pay this bill, I will indeed set up a fundraising page.  I know there are people ready and willing to help us, and that makes all this a lot easier to cope with.  You can’t even imagine how much that helps mitigate the stress.  But I keep thinking about all the people in similar situations who don’t have that kind of posse at their back, and who can’t afford good (or any) insurance.  What do they do when a bill for $350,057.01 arrives, and they know that it’s all theirs?

AEA Orlando: Special Edition

Yesterday, the team at An Event Apart unveiled a special addition to our schedule: a Special Edition event, to be held at The Contemporary Resort at Walt Disney World this coming October 27-29, 2014.  That’s right: we’ll be there during both the EPCOT International Food & Wine Festival and Mickey’s Not-So-Scary Halloween Party at the Magic Kingdom.  If you’ve never been to the Halloween Party, you should make it a point to go.  It’s really great.  The Imagineers go all-out to add fun Halloween touches all over the park, perfectly pitched to be spooky while still being, well, not so scary.  And as for the Food & Wine Festival, yum!  It’s actually where I discovered the one form of alcohol I can stand, and there are some great food stalls scattered all around the World Showcase.

But of course, you’ll really want to be there for An Event Apart!  We’re adding a lot of new and interesting enhancements to this show.  In addition to the brand-new Gold Pass, which includes (among other things) a backstage tour of Walt Disney World, AEA Orlando: Special Edition will feature three full days of talks, eighteen speakers in all.  I’m incredibly pleased and excited to say that I’ll be among them, delivering a talk on design.  Yes.

As regular readers know, I’ve had to withdraw from almost all travel and speaking this year, including for An Event Apart, and it’s been tough to be away.  I love what Jeffrey and I have created.  I love being there to hang out with other members of the tribe.  I love being able to learn from the best and share a piece of what I know.  It was absolutely the right decision to stay home with my family in this time, but still.  I miss being there, and I can’t wait to return.

And when I do, I’ll be presenting not about CSS, but about design and how to do it better.  Specifically, the talk is called “Designing for Crisis”, which draws on my experiences of the past seven months to illustrate how design can let people down when they most need its help, show examples of design that does help people in crisis, and explore ways to approach design in order to not let those people down.  Because if you’re helping people in crisis, you’ll be helping those who aren’t in crisis as well.

It’s a big departure for me.  For many a year now, I’ve been the guy who geeks out onstage over trippy selectors and obscure browser bugs.  You know, a CSS nerd.  But as I considered whether I had anything to say in Orlando (and at Rustbelt Refresh, which invited me to speak around the same time), I slowly realized that this talk was in my head and that I was incredibly passionate about getting it out.  I could see the narrative, the lessons I could underscore with it, and the advice I would give to designers.  I haven’t been this consumed by a talk in quite a while.

I hope you’ll be there to see and hear it, but even if that doesn’t sound entirely like your cup of tea, there are seventeen other amazing speakers filling up all three days—Karen McGrane, Mike Monteiro, Jenn Lukas, Luke Wroblewski, Jaimee Newberry, Scott Berkun, and so many more.  We have the complete schedule up now, so go, bathe in the awesome and make your plans to join us!

(P.S.  If it will take you a while to get approval, better start the ball rolling now.  We’ve already had a number of registrations in the 30 hours since we made the surprise announcement, and this event being as new and different as it is, we honestly don’t know long tickets will last.)

Care and Strength

My last entry about Rebecca and her chemotherapy was unexpectedly—well, I suppose “popular” is the technically correct term, though it carries a lot of positive connotations that I really don’t think apply.  It drew a fair bit of response and social-media sharing, anyway.  As a result, I wonder if I left new (or even returning) visitors with the wrong impression.

So let me be clear: Rebecca is not necessarily dying soon.  We don’t have a “time left to live”, not even a hint of it, because the goal of her treatment is to eradicate the cancer and give her many, many years of life.  So far, we seem to be on track for that, though of course we can never really know (but then, who can?).  Her outburst about not ever being eight was not because she’d been told that she might die soon.  We were deeply shocked to hear her say it.  We know that kids hear more than we think they do, and we know she’s whip-smart, which is why we tried very hard not to talk about her survival odds in her presence.  Still, it’s easy to think that someone of Rebecca’s youth doesn’t grasp the idea of mortality.  We thought that she knew it was serious but not that her life was in ongoing danger.  We were wrong.  A few days ago, she told Kat that she’s afraid to die because it would hurt me forever.  She’s not wrong.

Then again, given her age and intelligence, maybe she would be having these sorts of thoughts anyway.  We’ll never know if it was forced on her early by her cancer, or if in a world without cancer she would have thought the same thing at the same age.  It’s too easy to put a “because cancer” label on every moment of breathtaking insight, every time she steals our breath with her wisdom and her fears, every outburst of irrational rage.  We try really hard not to do that, because doing so cheats her of her agency and keeps us from seeing her for herself in all her facets.  We have a child, not a patient, and if it seems like that would be an easy distinction to maintain, it isn’t.  Not even to those who have lifelong experience maintaining it.

That said, most of the time she’s a normal five-year-old kid, as full of joy and mirth and energy as ever.  She’s tolerating the chemotherapy pretty well; her side effects so far are minimal, with no vomiting or other major GI problems, and she even still has a mostly-full head of hair.  Sometimes she gets listless or feels wrung out after treatment, but not always.  She had a bi-weekly intravenous treatment yesterday, in fact, and after dinner she was charging around the house with her brother and sister, laughing like a maniac the whole time.

And we let her, even though we probably shouldn’t have.  Her treatment yesterday went fine, and her blood test came back with some really great numbers.  The down side was that when we mentioned she had rebuilt her physical strength and skills to the point where her gym class coaches wanted her to move up to the pre-team class and start coming twice a week, the oncology team had to give us some bad news.  One of her chemotherapy agents tends to weaken bones during treatment, and also multiply the chances of internal bleeding after blunt-force injury—like, say, falling off a pommel horse and striking the mat with her head.  Or possibly fracturing ankle or leg bones with a dismount landing, or splintering vertebrae in a somersault.  So no gymnastics, they said.  Or, more accurately, they said that we have a choice: we can stop the gymnastics or stop the chemotherapy.

We cried a little bit as we told her, knowing how much she loves gym class and being there with her best friend.  Rebecca did not cry.  She just looked sad, and then insisted she only wants to go to school, not to gym.  We probably cried a little bit more at the near-certainty that she was lying to try to protect us, which is heartbreaking all on its own, just as it was to hear of her fear of hurting me forever.  We should protect her.  Never the other way around.

Yet another case of three steps forward, two steps back.  Just when we thought we were going to be able to add another bit of normalcy back, that door was closed to us.  In some ways that makes it even more frustrating, to see the goal so close ahead and then watch it slip far away.

I wish we could say that we are unique, or that our situation is as terrible as it ever gets.  Neither is anything remotely like being true.  Thousands upon thousands of children the world over are afflicted with life-threatening conditions like cancer.  Some of them have much better odds than Rebecca; others have far worse.  Some lay in bed all the time, without the energy to sit up, let alone play with siblings.  Some have no immune system left, others no appetite at all, still others live in constant pain.  Some are already terminal, and if you want to know what I believe is the absolute hardest thing a parent can ever do, it’s to tell your son or daughter that they will die very soon, and then sit helpless with them and their siblings as they do.  Superman Sam’s parents recently went through that hell.  They had to bury their child’s body and stand at his graveside with their other children.  As thousands of parents must, every day.

I cannot imagine how they survive, a month now after their son died.  I know how they survive, but I can’t imagine doing it myself.  I can’t imagine finding the strength to do it, even as I know that I would, because I would have to.  That’s what I tell people when they say they could never be as strong as us in this situation: yes, you could.  You would.  You’d do it because you had to, and wish hard for the day that you could stop.

So yes, our lives are much different and demand more strength now, and we often have to hear and do things that break our hearts, but it could be so very much worse.  We have hope where too many are long past that point, support and love where too many have little of either.  Our difficulties are like a mill pond compared to the ocean of suffering that others endure.  If you would spare a thought or a prayer for our difficulties, spare ten for theirs.  Spare them more tangible support, if you can.  All we have are each other, and only we can help those who so desperately need it.

Unicoding Font Styles

Last night, Kris Straub of webcomic fame, most recently the excellent Broodhollow, did something that I’d always suspected might be possible, but hadn’t figured out where to go to make it happen.  He showed me the way, and so I (once again) bow to him in reverence.  I’ll illustrate what he did with the following image of a two-item list (more on why I used in image in just a moment).  The first item in the list uses markup and CSS.  The second does not.

A rendering of the test case, to which this image is a link.

The first list item, as I said, uses elements and CSS: em and strong, plus all the styles that apply to them.  The second item uses Unicode symbols from the Mathematical Alphanumeric Symbols range of Unicode, U+1D400 through U+D7FF.  (See also a PDF from the Unicode Consortium, if you’re into that kind of thing.)

You can see the test file that was used to produce the image, and you definitely should see it if you’re thinking about using this technique.  It’s not as straightforward as might first appear.  For example, the reason I have an image with a link to a testcase is that some combination of WordPress, PHP, or MySQL refuses to allow me to put the raw Mathematical Alphanumeric Symbols into this post.  Every time I tried, everything from the first such symbol onward was just dropped completely when I saved a draft of the post.

The fun part is that any service that supports Unicode and doesn’t have those sort of glitches—say, Twitter or Facebook—can serve up those symbols in a tweet or a post, thus allowing you to add italics, boldfacing, fraktur, and other “faces” to your social networking.  At that point, it’s up to the user agent and OS to render the symbols, if they can.

And lots of them can, at least on the desktop.  My limited survey revealed that most Windows 7 and 8 browsers are fine, though not Chrome; Windows XP, on the other hand, saw broad failure.  OS X browsers, no problems; ditto various flavors of Linux.  On the other hand, iOS and Android mostly saw failures, but apparently some clients were okay, so the failures might be problems with individual clients and not the OS.  Nobody let me know how Opera Mini did.  If you’re inclined to report your results for the test file, feel free in the comments, though please check to see if your browser/OS combo has already been reported before you do (and if you got a different result that someone with the same combo, definitely report your result!).

The real problem likely comes in accessibility, as Chris Lilley pointed out: “Chance of screen reader understanding, near zero.”  Could someone test that theory and report the results in the comments?  I’d be very interested to know what happens.

I’m not recommending that people do this, to be clear.  The Unicode support issues alone are enough to discourage use, and if the accessibility problem holds, that’s an even stronger disincentive.  But who knows?  Maybe in a few years, both problems will have been resolved and social media clients will let us boldface, italicize, fraktur, and even double-stroke our little e-missions.

The Choice

Last night, not for the first time and probably not for the last, we made our five-year-old choose between drinking poison and having us force it down her throat.  We did so calmly, patiently, quietly, never raising our voices or becoming angry.  We’ve had too much practice at this to make the mistakes of the early days.  Perhaps with more practice we can somehow find a way to make it a game, some way of making it all easier.  For now, we simply let her know, with quiet patience and love, that this is not optional, and if she doesn’t take the poison herself, we will make sure it gets into her.

It isn’t always a long struggle.  Some days she poisons herself without complaint, getting it over with in order to get on with life.  But not very much, of late.

The poison in question is temozolomide, a chemotherapy agent that’s specifically used to treat brain tumors.  I once read the label, with its biohazard trefoil, and stopped when I saw the word “cytotoxin”.  That means “cell poison”; it attacks cells that are dividing, as cancer cells always are.  But it attacks all dividing cells, not just malignant ones.  A growing five-year-old has a lot of dividing cells, and we are poisoning them all.  We just hope that we’re poisoning the cancerous brain cells more than other cells.

But her brain is trying to grow, too.

Temozolomide is an oral medication, usually in capsule form.  However, for kids who haven’t learned the trick of swallowing four large capsules in quick succession, its toxins are suspended in a gooey liquid compound that tastes vile.  I know; I tasted it, so that I could better understand her struggle.  Worse still, it can’t be flavored.  We’ve asked—begged—more than one pharmacist, but it cannot be combined with flavoring agents.  So she takes her poison straight.  At home.  For days at a time.

When she asks why she has to take something that’s “too icky”, we remind her (even though we know she knows why, just as we know why she asks) that it’s to keep the “bad rocks” from coming back.  That term is a holdover from when Rebecca was three and Kat had to have some masses removed from her abdomen, and “bad rocks” was the best way to explain to Rebecca what was being taken out of her mommy.  We thought she was too little to have to worry about cancerous growths, so we simplified things to make sense to her.  We still think she’s too little to have to worry about cancerous growths, but we can’t be euphemistic any more.

And if we ask her what will happen if the bad rocks come back, she says, “Not telling” in a small, scared voice.  This is actually a common reply from her, but usually it’s said with a smirk and a gleam in her eye, the one that kids get when they think they’re getting away with something and it seems like the biggest joke in the world.  When she refuses to tell us what will happen if the bad rocks come back, it’s because she understands all too well.  She understands better than we can bear.

We know she understands because when we were home between her surgeries and the radiation treatments, twelve days of having the family together in the midst of everything, Rebecca got very mad at her sister for not letting her play with a toy.  “It’s for kids eight and up,” Carolyn said, reasonably.  Rebecca, of course, found this line of reasoning lacking, and came storming into the kitchen.  “Carolyn won’t let me play with that toy and I have to play with that toy!” she shouted.  We explained that it was in fact for older children, and that she certainly might want to play with it, but that wasn’t the same as having to play with it.  “I have to!” she shouted again, her voice rising almost to a scream, breaking with angry, anguished sobs, “I have to play with it now because it’s for kids who are eight years old AND I’M NEVER GONNA BE EIGHT!!!

I can think back to the first days of her illness, lying almost unconscious with so many tubes leading into and away from her, with relative dispassion, as if analyzing a movie.  It might even seem like I’m doing that right now.  But that moment of anger and fear erupting from our five-year-old daughter brings me to tears every time I remember it.  I’m typing this part with tears streaming down my face; it’s taken me this long to be able to come to a place where I can write about it at all.  Even now, I want to throw up.  I want to die, if that could somehow save her.

Instead, I have to, we have to, make her poison cells all throughout her body and especially all throughout her brain in the hopes of killing off the cells that might kill her.  All the other cells that die in the process, the good cells that are trying to grow more curly hair and develop her brain and lengthen her bones and help her grow up, are collateral damage.  We tell ourselves that those innocent, beneficial cells are acceptable losses, and hope that it’s true.  We hope that the damage we do trying to save her doesn’t end up killing her later.

In the end, she took the medicine herself, as she always does, choosing to be in control of how things happen to her.  It took several false starts; for each, she calmed herself by sitting up straight, closing her eyes, and taking a deep breath.  And then, as soon as the syringe touched her lips, she crumbled back into sobs, her body shaking with visceral rejection and misery.  Not anger, even though it would be easier for us if she hated us for what we keep doing to her.  If she blamed us for making her do this.  It would be easier to be targets of her anger than witnesses to her hopeless, knowing, abject misery.

Finally, after all those tries and stalling tactics, she made her choice.  She squared her shoulders, slowly put the syringe to her lips, and pushed the plunger, drinking it all down in two audible swallows.  She then immediately drank half a cup of Gatorade in an effort to mask the taste.  She doesn’t usually like Gatorade, but it’s what she asks for to go with her chemotherapy.  So we give it to her.

But only after she’s poisoned herself.

People ask us how we’re holding up, and when we say we’re doing pretty good, we’re being honest.  We know that we’re lucky to have to poison her, just like we were lucky to have to irradiate her.  We’re beyond grateful for those opportunities.  We are.  But we’re also painfully aware of the nature of what we’re doing.  We feel every last drop of the horror it is to be grateful to be damaging our baby; to have the good fortune to force her to choose, day after day, whether she will poison herself or we will do it for her.

Thanksgiving

This is an even more thankful holiday for us than usual.  We’ve always been thankful for our good fortune, friends, and family, but it was two days ago that we got the strongest indication yet that our daughter Rebecca will live to see next Thanksgiving, and very possibly many more beyond that.

Tuesday morning we got up very early to deposit Carolyn and Joshua with friends, and then took Rebecca to Hillcrest Hospital for an MRI.  This was our first interaction with the radiology staff there, though by no means the last, and Rebecca as usual charmed the socks off of everyone there.  After she recovered from the anesthetic, we got lunch, picked up a few groceries, and then headed to the main campus of the Cleveland Clinic to get the results of the MRI.

To put it baldly, the results couldn’t have been any better.  The MRI showed no sign of renewed tumor growth, no regions that appear abnormal, not even signs of swelling secondary to cancerous activity.  This doesn’t mean that she’s cancer-free: nobody can say that with certainty.  As I wrote two weeks ago and XKCD beautifully illustrated a couple of years ago, there can be never really be certainty except of the terminal kind, but what we have now are strong signs that Rebecca’s cancer actually can be eradicated.  What that means is that instead of hospice, we can start a year of chemotherapy in an effort to make certain that the astrocytoma doesn’t return.  The normalness of the MRI, and the particular pattern of side effects she experienced from the first round of chemotherapy, mean it’s reasonable to feel hope.  As a friend put it, this isn’t the light at the end of the tunnel, but it means that there is a tunnel.  A long and difficult tunnel, perhaps, but nevertheless a tunnel that might one day yield to daylight and open skies.

And so we’re thankful for the nurses and doctors that have shepherded us through one of the most harrowing periods of our lives.  Without them, Rebecca would already be dead.  We’re thankful for the medical research and science that made it possible to remove so much of the tumor and target any remaining cancerous tissue.  Without them, Rebecca would be dying.  Instead, she is still as sparklingly alive as ever, and we have hope again.

We‘re thankful that we have the means and the opportunity to fight for our daughter’s life.  We’re thankful for family, who were there, and will always be there, when we need them.  We’re thankful for all the people who have supported us through the past several months, bringing meals to our house, ferrying our kids to school and activities, and doing the organization work to make sure it all happened.  We’re thankful for the Cleveland Animal Protective League, where we adopted a three-month-old shorthair tuxedo kitten yesterday.  We’re thankful to be together under one roof, and not under a cloud of grief.  We’re deeply, profoundly thankful.

A happy Thanksgiving to one and all, whether you celebrate a specific holiday today or not.  May every day be an occasion to be thankful.

An Event Apart 2014 Schedules, Round One

I’ve recently had the odd experience of seeing from the outside something that I usually get to see from the inside: the schedules and workshops for the first three An Event Aparts of 2014 have been announced.  Those shows are:

All the shows feature a great mix of veterans and new faces, all coming together to bring our usual blend of looking to the future while staying firmly grounded in the details of the here-and-now.  The shows include workshops from Luke Wroblewski (in Atlanta or Boston) or Josh Clark (in Seattle) about mobile and touch design.

Ordinarily, at this point I’d say “hope to see you there!” but I can’t be sure that I’ll be able to hold up my side of that.  The same family crisis that forced me to withdraw from the last four AEAs of 2013 has also kept me off the roster for at least the first three shows of 2014, and I don’t know that I’ll be able to travel even to visit.  I’ll continue to be a part of the show, but behind the scenes, at least for now.

And that crisis is why I got to experience the announcements from the outside.  While I was in Philadelphia, I was basically on extended medical leave from AEA, with the team picking up every scrap of my duties they could.  They pretty much soaked up 99%+ of what I do daily, sparing me the worry of day-to-day operations and leaving me free to focus everything I could on my daughter and family during a very difficult period.  I am forever indebted.  I can’t ever thank them enough for what they did for me.  I am beyond fortunate to have had such a strong team of friends and colleagues at my back.

I will say that it was a good thing for me to experience the process from the audience, as it were, gaining a new perspective on what we do and how we do it.  I certainly don’t recommend a major crisis as the best way to gain that perspective, but I have a newfound appreciation for the value of stepping outside of the process as completely as possible.  You might be very surprised by how things look from out there.

But back to the point: the complete agendas are up for the first three AEAs of 2014, so go check them out!  And if you’re at all interested, I wouldn’t wait to register any longer than absolutely necessary.  Every show for the past two or three years has sold out weeks or months in advance, and cancellation rates are low enough that it’s pretty rare for people on the waiting list to get in.  I hope you’ll be there!

July 2014
SMTWTFS
June  
 12345
6789101112
13141516171819
20212223242526
2728293031  

Archives

Feeds

Extras