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.