Like
basically all of life, recovering from an organ transplant can often be a dull
game of one step forward, two steps back.
On Wednesday of this week, Annaka was eating like a champ and well on
her way for an end-of-week discharge. A
day later, after being unable to keep hardly any calories down and sleeping
nearly all day, the doctors had to reevaluate her condition, assuming she had
picked up a flu virus. Considering that
her immune system is shot, the set back is well within the range of typical, but
frustrating, nonetheless.
Nancy, too, had to return to Pittsburgh midweek so
doctors could evaluate why her incision isn’t healing as quickly as they’d
like. She is back home now but with
instructions to return to Pittsburgh next week.
Her setback is also within the parameters of normal, but that doesn’t
make it not hurt.
This past year has been one of intense inner focus
for us—as might be expected from a family dealing with such a serious medical issue—as
we’ve learned to deal with the many slips and stumbles that come with Annaka’s
diagnosis. Through necessity, we’ve kept
much of our attention on immediate concerns, like laundry washing and bottle
scrubbing, diaper changing and medicine taking.
Regardless, the outside world bangs at the door, regardless
of what kind of day Annaka is having.
What happens outside our home still happens, whether we choose to pay
attention to it or not.
Like much of America, we are anxious about what
happens next. Today is the day, after
all. We began the day with one President
and end it with another. Tomorrow the campaign
promises are expected to start becoming reality.
And the reality is, the Affordable Care Act, despite
its myriad flaws and labyrinth policies, did provide at least two crucial,
life-saving aids for someone like Annaka. For
one, the legislation removed health insurance coverage limits. Prior to its enactment, companies could limit
the lifetime payout for the insured.
What this meant for someone like Annaka was the day might eventually
come when she had hit her limit and every expense would become out-of-pocket. Considering that it costs hundreds of dollars
every time a doctor walks into the hospital room, considering that her condition
is not ever really going away, that was a pretty big deal for us.
The ACA also removed the burden of preexisting
conditions. Annaka, of course, even
though she worked really hard in utero and followed all the rules, had a pre-existing
condition before she was even born. Without
this rule in place, it’s plausible no insurance company would have provided her
with insurance once she became an adult.
Thus, when the man elected to the highest national
office has vowed to immediately dismantle this admittedly flawed legislation,
we take his election quite personally, as should all Americans.
Now, to be fair, our new President has said that he
does not intend to remove all vestiges of Obamacare when he takes office, only
the bad parts. We are hoping those two aforementioned
ideas, which seem pretty humane, if nothing else, continue as part of whatever
crusade the new leadership replaces them with.
Regardless, these are unsettling times. You didn’t click on this link to read a
political commentary, however, on today, of all days, so I will stop.
Yes, this past year has been one of intense inner
focus, but that has been possible because of you. We have been able to take
care of Annaka these past thirteen months now because everyone else, it seems,
has been picking up the slack everywhere else.
From the meals to the benefits, from the prayers to
the gifts, we have been drenched in kindness.
From the surgeons to the nurses, from the custodians to the cooks, we
have been saturated by expertise, saturated by folks just doing their job but
doing it unbelievably well, and with admirable passion.
What strikes me about all of those gifts, though, is
that people can be kind regardless of who is President. People can be gracious and giving, can be
really good at their job, day in and day out, and it doesn’t matter at all who
lives in the White House.
That’s because America is very much more than just
our frazzled government and our embattled institutions, or even our traditions
and ideals.
For example, America is Annaka’s surgeon, who
immigrated here years ago so he could save her life and the life of those like
her.
America is Nancy and her family, who gave and gave
and give without blinking, and it’s also all the teachers I work with who have
helped us more times than I can count.
America, interestingly enough, is also those free
Steelers hats we got that one day, and it’s the tricky highway charging out of
Pittsburgh. That talkative janitor at
the rest stop in Indiana, who was a war veteran and had probably seen too much
hell, but he was kind and needed to tell me that I shouldn’t wear a hood with a
hat on, because it would distract me from driving. That guy is America, too. Big time.
I’m going to refrain, now, from going all
Walt Whitman on you because I don’t have the poet’s talent. The broader point I want to make,
with the limited time remaining, is that everything is going to be OK.
Annaka has had many doctors in the last thirteen
months, and a majority of the heavy hitters were born in foreign
countries. Most of her Pittsburgh
surgeons were immigrants; her surgeon from St. Louis was born in Ireland,
another doctor was from Germany, another doctor from Peru. They’re Americans now, but they were born
outside our borders. This geography
lesson is actually relevant, because it suggests very strongly something that
many of us might have forgotten over the course of this challenging election
season: America, too, is going to be OK.
Brilliant people with life-saving skills are not in
the habit of flocking to crumbling nations.
These professionals are among the most talented pediatric liver doctors
on earth. They can work anywhere, but
they choose to work in America.
That is very important to remember, because if you
pay too much attention to our pockets of national media, if you focus too much
on your Facebook feed, you get dizzy.
You stumble around in vertigo, shocked that even your walls are still
standing, convinced that any day now our 21st century civil war will
cut loose and consume us all in a fire of ideological mercantilism.
Guess what, though?
There’s no fire. Does America
have problems? Yeah, it’s a country full
of people on a planet full of more people.
Of course it has problems. You
know what’s interesting, though? Annaka
has had close to fifty different nurses over the course of this year. Almost all of them were excellent; not a single one said a word about the election. We
spent hours and hours with these professionals at all times of the day and
night, and they seriously never mentioned Trump or Clinton one time.
Funny, isn’t it?
The most contentious election ever, and they didn’t have an
opinion? Of course they had an
opinion. They were intelligent young
people with backgrounds in medicine; they probably had all kinds of thoughtful
ideas. They were taking care of us,
though, they were performing their role, and their role didn’t require
ideological dogma.
To be clear, I am not advocating silence or apathy
as the marks of good citizenship. We do
have a responsibility to speak up. Civil
debate and even civil disobedience are often necessary components of a healthy
democracy. (As an aside, civil disobedience does not include property damage.)
However, there is also something tremendously
patriotic about just doing your job really, really well.
You are so valuable to this nation and to your
community when you lean into your role, really dig into what your calling is,
roll up your sleeves, and work.
We have seen so many people who are so good at their
jobs these past thirteen months, it’s hard to be pessimistic about the next
four years or the next eight years or the next sixteen. We have been so inundated with charity and
kindness this past year, worrying about the future just seems out of line.
So, in closing, Donald Trump didn’t cause this mess, he’s
a symptom of it, and yes, it’s absurd we’re at the point where we actually elected
him. But we did. He’s President.
Regardless, in times like these I personally take great comfort in the third verse of Psalm 146: “Do not put your trust in
princes, in human beings, who cannot save.”
The rest of that chapter has
a lot to say, too.
Slow...Clap......
ReplyDeleteWell stated!
You are an amazing young man,husband,father,son. To say I enjoy and get so much from your thoughts and views is not enough to say. I am sharing this with much pride that I know you through your wonderful parents (whom I adore). Know that, at my age, you give me pause to think and rethink issues. Much love and prayers to your family Josh....Donna
ReplyDeleteVery good read - thank you
ReplyDelete