Episode 24: Down the Rabbit Hole aka the U.S. Health Care System

Should you find yourself on the cusp of death in these United States, be afraid.  Be very afraid.

Okay, so we’re all afraid on the cusp of death, so how about this:  Should you find yourself sick for any reason in these United States, be afraid.  Be very afraid.

I live close to the finest medical institutions on this planet, and I have arguably the best insurance company covering my care, so my care should be top-notch and should not end up bankrupting me, right?

Well, it was a different insurance company covering me when I did have to go bankrupt due to losing my job because I was ill—yes, I know that’s illegal, but you just try to fight it and see how useful that in—in my case, I gave up after one of three appeals because I was so darned sick, so exhausted, and my mind and abilities to do paperwork were not up to the task, and so I let it go.

Let it go.

Let everything go.

Because when you’re sick in the United States today, that’s likely what you’ll have to do.

The issues abound, and I intend to take each one on in future episodes, but for today I’ll focus on what I believe to be the underlying problem, the fundamental issue escalating costs and reducing coverage.

Episode 23: A Sabine Christmas

I'm coming to this topic raw, unpolished.  Uncertain of what I want to say or even how to begin to say it.  I imagine I will massage this episode innumerable times in the future, and I'm not sure I'll get very far with this very first attempt.

I want to write about it, to connect with the persons and places and emotions I connected with then, but the task is daunting on so many levels, the most daunting being the pain I feel when I think of her, lying there in the hospice bed, sleeping most of the time, thankfully--she wasn't in a lot of pain most days, but exceptions certainly came, and even if medication kept the physical pain at bay the psychic pain was palpable to us all.

We tried to do what she'd wanted.

Sabine knew she was dying, and she and I had shared emails in which we talked about what we'd want in our last days.  I'd visited her a year ago in Albania, and I was dumbfounded that she had lived another year after her surgeon told her they'd decided her cancer was inoperable--in other words, it had won.  The only way to defy Sabine's determination to live was to be relentless and brutal, and her cancer was both--though for the longest time she'd say she had cancer, but cancer didn't have her.

Episode 22: From Bad To Worse Part Deux

In the pilot of The Mary Dell Show, I explained how the name of the show is based on my brother's recording me as a kid on his reel-to-reel tape player as he interviewed me about newsworthy topics such as how to catch lightning bugs.

When seeing that gigantic tape player on the foyer floor as my parents said good-bye to my big brother on his way to Georgia Tech, the impact of his leaving hit me for the first time.  That tape player defined my brother, and it defined the relationship I'd had with him my whole life.

That would mean no more Mary Dell shows, no more Walter Kronkite-depth interviews on the workings of my then eight-year-old mind.

And I mentioned that as my first heartbreak.

My second came when my baby was born two months early and was given a 50/50 chance for life in his first 24 hours, and a third came about nine months later when I learned he must've had a stroke while fighting for his life in the Isolette for 26 days, and his entire left side was partially paralyzed. And a simultanous one when learning, at the same time, that he had craniosynostosis, a malformation affecting the skull bones, which explained the odd shape his had developed into by then. By the time he was a year old, he'd had two neurosurgeries to chisel open the sutures between those bones, which had fused prematurely and forced his brain to grow in a long shape from front to back.

In a flash of nature's ironic fun with us, Jason had a third surgery to add plastic to those same sutures because, having been forced open with hammer and chisel, they refused to close again, as they do in most kids' heads well before then. And in yet another flash, nature took away his hair when he was in his early 20's, leaving his skull, with its scars and bone ridges exposed and no camouflage at all for it shape which, thankfully, had greatly improved after his surgeries but still draws attention until one gets to know the person he is, and of course it doesn't matter at all then. Nevertheless, life has been tough for him, and appearance matters in this superficial world. He's fortunate, though, that he is a very good looking guy, so any flaws in his appearance quickly disappear once you get to know him, as is true for all persons with unusual physical characteristics.

[N.B. June 27, 2014.  In an interesting--no, groundbreaking, for me--twist, Jason's early baldness may have been for the exact same reason he was born with craniosynostosis--a genetic condition that I'm convinced runs in my family called myotonic dystrophy. The two conditions were just recently connected genetically by scientists. I'd been sure since this happened that there was a reason for my pregnancy problems and Jason's issues, something that would explain both--I was not satisfied with the explanation given at the time that his craniosynostosis was the result of a random gene mutation. Of course, doctors knew so much less than about our genes. The Genome Project was merely a dream then. It's taken me 35 years and a whole lot doctors' appointments, tests, medical advancements due to research, and personal sleuthing to finally come, I believe, to the answer. I'll know for sure soon, since a Hopkins neurologist has reviewed and agreed to take my case, and I'll see her on July 9.]

Episode 21: From Bad to Worse--Or--Just Another Typical Day

Flu.

Something so mundane, yet something that will righteously kick your ass.

As it has mine over the past week plus.  Today was my first day back to the office, yesterday my first day on email--something that never, never happens.  Hell, the whole month I was in Europe I was online and in touch, wired and ready for sound, practically every day. It was more fun checking in after a day in the Alps, though, than it was last night still sweating and miserable thanks to a tenacious round of aches, fever, major killer cough, malaise, headache, head-stuffed-with-cotton ache, dizziness, a touch of nausea cum diarrhea ... well, you get the gist. On the other hand, I was only seeing the Alps (if I'd had a bucket list, they would've *pun alert* topped it) because my dearest friend Sabine was then dying of cancer and had invited me (and paid for me) to spend a month with her as her family and friends said good-bye--so that part was NOT fun. It was beautiful, because of the way Sabine had arranged everything--and, thus, fun did occur, as when we celebrated Christmas in German style with her family (actually, no blood relations there, but family nonetheless) who would adopt her adopted daughter after her death).

So, obviously, things could be far worse--but tell that to a body racked with flu. So, back at work, my "To Do" list has had an increasing "Should've Damned Done That!" category, and let me tell you it is not much fun to lie around hoping to die at the same time you're stressing about who's going to lay into you at work for something you should've done already, the whole time kind of praying that everyone lets you slide because the flu is the flu, an equal opportunity ass slayer.

In fact, not to make light of a sad subject, the flu killed my grand-daddy whom I never knew when my own daddy was only four years old.  At least that's how I've pieced things together, my father having been born in 1915.  [MY, I am truly old myself, as that statistic lays bare. But I like when, where, and to whom I was born, so I really don't care that this grand journey has cranked along quite a while.  Frankly, I'm lucky on a variety of levels that I've come this far!]

My dad told me that his father died in a gutter in the city, and from that I'd gathered he'd been a drinker or, more accurately, a drunk.

But in later years I learned about the 1918 flu outbreak, which lasted more than that one year, into the year when Dad would have, in fact, been four, and the fact that hundreds, thousands, were dying in the streets of Washington, DC, and suddenly my grandfather became a hero in my eyes. He dared not bring his illness home to his wife and little boy, so he died in the streets with the masses though I've no doubt my grandma (from whose name the "Dell" of the Mary Dell Show is derived) would have tucked him into bed and brought him tea and homemade soup to ease his dying days had he actually gone home.

I learned that and saw photos of the dead bodies in Influenza--a hell of a book, by the way, though not quite as masterful as And The Band Played On, but the message of both was that a major pandemic of any kind will turn society upside down, and not only the disease itself is ugly. One day I'll get around to ordering my paternal grandfather's death certificate from Vital Statistics.

On my mom's side, I already know that her dad died of an aneurysm of the aorta in his 50's--maybe a year or two older than I am now. I remember that because my brother and I were kids when she told us that.  He might have been all of twelve, and without thinking he laughed and said, "Wow, that's sounds cool!  An aneurysm of the aorta!"

Of course, I knew that immediately as the words came out of his mouth he'd realized they weren't exactly the right thing to say to your mom just after she's told you about her father's death. And so I cringed when she said, "Well, I don't think that's something to laugh about" or something equivalent. I hope Mom also realized immediately after she said that that my brother would have figured this out out and already felt bad about having said that--my brother J was quite sensitive.

In other words:  AWKWARD!

But I know the cardiovascular system on both sides ain't the greatest.  MY dad died of a myocardial infarction, MI for short (clever, huh?) just shy of his 70th birthday this very month .... uh, in 1985.  I was 25, and he'd gone with Mom to their ocean getaway and died in the shower the morning after a night of dancing to Big Band music, the music they'd danced to the night they met in 1947 at the Spanish Ballroom in Glen Echo Park.

TO BE CONTINUED

Episode 20: Down the Rabbit Hole OR On Being a Patient in Today's Health Care System

If you've ever read Alice's Adventures in Wonderland, you know that "Wonderland" is not a happy place to be.  Nothing makes sense there, and when Alice tries to get out of the underground warren she falls into, she is thwarted at every turn by absurdity.  Nothing is as expected; everything is illogical; nothing makes sense; frankly, the place is terrifying.

Just like today's health care system in these United States of America.

Now, I've had some good doctors, and I'm not here to doctor-bash.  Nearly all of the absurdities I've been subjected to have been thanks to the insurance companies--you know, the ones that are supposed to pay for services to make us healthier but, in fact, are money-making entities far more interested in lining the pockets of their CEOs and shareholders than in taking care of the sick who rely on them and who pay for their coverage. We are their customers, and if they didn't have a monopoly on the whole thing, they couldn't get away with what they do.  If we had a choice about how to pay the astronomical costs of taking care of ourselves--those skyrocketing costs ALSO thanks to those same filthy rich CEOs and soul-less company owners--we'd never shop at their "stores," ever.

But we can't vote with our feet.  We can't take our business down the street to get a better deal.  They've got us in their gnarly fingers and are pushing pins into our inert bodies while pocketing all the money in their bank accounts overseas--not even keeping our dollars right here in the good ol' USA.

Oh, well, hey.  That's what Obamacare is all about--breaking that monopoly.

Episode 24: On What Jesus Said About Hypocrites

I wasn't too old--five, six maybe--before I realized something was very, very wrong with this world I'd been born into.

Things just weren't adding up.

What I learned in church--that Jesus loved everyone the same, that we were supposed to love everyone the same as He did--just didn't appear to be happening in day-to-day life.

I arrived a few days late in the dog days of a hot Washington, DC, summer, disappointing my brother, as my due date had been the 4th, and he'd drawn a picture of me "shooting out like a firecracker," as he wrote in the caption.

The year's events demonstrate the transition in our nation from the innocent and prosperous (for white people) 1950's to the next decade, during which society would be turned upside down by a bunch of white college students rebelling against the values of their parents (my sister included) and the unrest and protest of those "other" Americans--the ones who'd lived at the margins of society since merchants sold them into slavery and, despite Lincoln's Emancipation Proclamation, had never really been freed.

But what did I know of that?  My family lived in a post-war, solidly built brick Cape Cod in a neighborhood of nearly identical such homes, each with the dappled trunk of a sycamore stretching ever higher into the sky, dropping spiky seedballs into the grass below for children's bare feet to painfully land on.

Those were the worries I had as a child--not whether my mother could pay the heating bill, or whether the lights could be turned on at night, as one of my students would write many years later when I assigned an essay in which they were to describe a difficult time in their lives.

Episode 19: Wonderful (Not) Wegener's Granulomatosis

My health journey continues to lead me to places I've never dreamed or heard of.  I mentioned earlier that my ENT thought I might have Wegener's or a similar condition.  I saw a rheumatologist at Johns Hopkins on July 18, and she has initially diagnosed me with this oh-so-wonderful disease.  She then sent me for a CT scan of my chest--lots of pulmonary and airway issues, which are common with Wegener's--and a slew of blood tests.

Now, we may yet find out it's not Wegener's; perhaps it's cryoglobulinemia, which has many of the same effects.  Since I also have hepatitis C, the cryo is a good possibility--it is common with folks who've had hep C for many years, as have I. Wegs and cryo both affect the blood vessels, which then affect vital organs, such as the lungs and kidneys. When I say "affect," I mean more or less destroy.  It's true--my nose has necrosis (dead tissue) in it from the inflammatory damage. So far I have not tested positive for ANCA antibodies, which would have just about confirmed the Wegener's.  But that doesn't mean I don't have it, as a small percentage of "Weggies" tests negative and/or may develop the antibodies later.

From MoonDragon's Health & Wellness
http://www.moondragon.org/health/disorders/wegenersgranulomatosis.html