cardiomyopathy

Pillow Talk

| halfnutswilltravel

From an actual conversation in bed tonight:

“I read an interesting penis article today. ”

“Here we go.”  Two seconds ago he thought we were finished talking and I would let him fall asleep now. 

“Did you know in outer space your lower extremities don’t exist? ”

“Beg pardon?”

“There’s no up or down,  like Ender figured out in the arena at battle school.”

“Serena, there was no mention of a penis in Ender’s Game.”  His tone is something close to accusation of blasphemy. 

“Correct.   And that would be a story, not an article.”  I’m a stickler for semantics. “So if there’s no up or down, there’s no lower extremities.”

“Was this article about disappearing space penises?”

I don’t know where he comes up with this stuff.

“Not exactly.  The article was about how penises shrink in outer space because there is no gravity to help draw blood to the area.”

“Are you stalking NASA Astronaut Scott Kelly again?”

“It’s not stalking if he’s on the space station and literally photographing his location every forty-five minutes.”  I might sound too defensive.   “But no. I wasn’t thinking of Kelly’s penis.  You made this weird.”

Sigh

“But it made me think – if gravity isn’t helping your blood get to the completely equal extremities, it’s all dependant on your heart.”

Sigh

“Your heart has to pump extra hard to get blood all the way to your toes because they’re so far away now.  That would be a big strain on cardiac output.”

Sigh

“You know what this means?”  I feel a baby sob welling in my chest.

“Huh?”

“I probably can’t ever go to space.”

:::::: Really loud snore :::::

I didn’t actually have any ideations of space travel; at least, not since 4th grade when Chad Brewer laughed at me and told me girls couldn’t be astronauts.  And right this minute,  I’m losing sleep for the second time in my life over this. 

I hope somebody is snoring in that butt hole Chad Brewer’s face tonight,  too.

Alive

| halfnutswilltravel

c9db983b835068660fcf859b38727152-1.jpgToday I kidnapped my girly friend as soon as she got off work.  I had to drive her over to this beautiful little piece of property my realtor found this morning.  I can’t tell you where it is because you might win the lottery before I do and buy it.  I can tell her where it is because if she has such great fortune she will let me sleep on her front porch every night so I still get to enjoy the view.  Plus, the spring bulbs are in bloom, the trees are just about to burst open, and I figured this was far better than taking her a bouquet of flowers to celebrate some great news she got yesterday!

We walked the land and portioned off pieces for the garden and the chickens, then decided the pair of alpaca can be free-range.  We fraternized with the neighbor’s faithful guard dog, who might be chow / golden retriever mix, and is probably a girl on account of the way she squatted to pee.  She told me what the house I’d build ought to look like, because she’s good at those things.  Then I drove her back home.

Just seconds before turning onto her road, something hit me; not in the literal sense,  but may as well have been.

“What day is this?” I asked in the middle of jabbering about other things.

“Thursday.”

“I mean the number!  What number is this?” I was getting excited.

She told me today is the tenth.

March tenth!

Ya’ll, this is the twelfth anniversary of when I was supposed to die any minute!
And then it was going to be maybe in a few weeks.  And then during child birth.  And then, because doctors are sure about these things, sometime within the next 5 years, for certain.

And for the first time ever, I forgot the anniversary was approaching!

A dozen years ago I was put on a medication regimen that not only stabilized my (low) heart function, but exacerbated my ADD.  I think both effects can be credited with saving my life as I’ve clearly been too distracted to die.

I’m frequently humbled by the tribe of heart sisters I’ve made all over the world – women who’ve had the same diagnosis and handled it with far more grace than I could ever muster.  And last year I wandered into the wilderness of Montana only to bump into a heart brother, too.  This disease has given me far more than it took, so here’s a little toast to all the wonderful people cardiomyopathy has brought into my life, and a spill to all of the superfluous and poisonous things it has removed.  And may next year I forget the date all together.

33/33/33

| halfnutswilltravel

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Twenty-three: the number of echocardiograms, as of yesterday, my son has had since he was two years old.

Jack was diagnosed with cardiomyopathy two months after me, and seven years after his oldest sister.  We were all given the 33/33/33 prognosis; thirty-three percent get better, thirty-three percent stay the same, thirty-three percent get worse.  If fear and dread are any measure, one of those thirds has always been much, much heavier than the other two thirds combined.  And multiplied.  By thousands.  There are three of us, and three equally likely outcomes.  The wait and weight have been excruciating.

Madison’s heart size and dysfunction have remained as they were found almost nineteen years ago.  My own function has fluctuated, with the averaged result and current status being that I’m exactly where I was about a dozen years ago.  Stability is such a wonderful thing, except for when you are wishing for improvement. 

Still, I wasn’t  prepared for yesterday’s news from Jack’s cardiologist.  Jack has grown into his heart.  It is amazing to me that I forgot this was even one of the possibilities.  His physical restrictions have been lifted, except for weight lifting and tackling sports – which is totally ok with me (I am wholly anti-youth-football).  My son has always been and always will be extraordinary.  But now he gets to be normal.  We made the dreary drive home from Duke through drizzle and traffic, excitedly planning his spring tryouts.

Though that 33/33/33 statistic was true two decades ago, huge discoveries in the treatment of cardiomyopathy have been made.  While quality and quantity of life have both been improved, it’s still too soon to know what those new numbers are.  I think I kind of like it better this way, not mentally divvying up our futures.