Our adventure won’t appear on anyone’s news feed. But in this moment, there is nothing more real than the beauty and miracle of being alive, of being in love, and of living to see another day.Read More
Sean and I walked out of that antiquated exam room, through the chaotic waiting area, and into the elevators feeling nothing short of buoyant. “Someone should have been filming that appointment,” he said.
When he and I reflected upon what had made that encounter so powerful, we decided it was a number of things…Read More
I came to expect that every time I logged on, I would be greeted by the little green circle to the right of her name, illumined, the online version of leaving on the front porch light.Read More
Charts of accumulated inches, photos of cars stranded, maps made beautifully daunting with colors, coded to show who’s got it worst fill our news feed and our consciousness. Even when our window shows only a dusting of snow and our own commutes are perfectly manageable, these images from elsewhere negate what we are actually experiencing, instead clouding our minds with fear that we will be next, that our data will be added to the charts, that we will become the next headline.Read More
It is much easier to be hospitalized, homebound, grieving, depressed
on a Tuesday than on days like this.
For Tuesdays are not filled with expectations.
They are not photo worthy.
There are no hashtags.
In preparation for these 35 days,
we revised our Health Care Directive,
we crafted our will,
we made no plans beyond April.
That’s how poor the odds were.
I want to tell them that it is true,
that he IS unlike anyone they have ever treated or read about,
but that his exceptionality has little to do with the way his DNA fails to repair itself after injury.
My previously thick skin has been worn down by the traumas we’ve endured.
As if each trip to the doctor brought with it a round of exfoliation
via steel wool.
Only a thin membrane covers me now,
one that is fully permeable to everything in my radius.
Holding the weight of this diagnosis on our shoulders and our souls,
Holding the doctors and researchers accountable to do their jobs, even and especially in this most complicated case,
Holding our breath that all will go well,
Holding out hope that he will defy statistics,
I glare at the beautifully manicured sidewalks of neighbors,
scraped clean by
snow removal services, snow blowers, or healthy husbands,
of which I have none.
One floor below, but in close enough range to hear every spin and every shriek, a different Game of Life is playing out.
SPIN “You got Fanconi anemia!”
SPIN “You got throat cancer!”
SPIN “It’s inoperable!”
We are in an especially heinous type of purgatory at the moment.
We know the cancer is there. We have shiny pictures to prove it.
We don’t yet know how extensive its reach is.
We don’t yet know the plan
How fiery the hell we’re about to walk into will be.
I know that it only takes one storm to wipe out a town.
Our current ten-day forecast calls for five.Read More
He knows his tightrope is both shorter and thinner than most,
that its length has been truncated and its width frayed to a tiny thread,
making each step treacherous and full of potential peril.
Dear friend whose beloved partner, child, friend, parent is missing today,
YES, I’m sure there are things in your life for which to be merry
you get to say, today, and any other day you want:
THIS IS TERRIBLE. I MISS MY PERSON. NOTHING IS THE SAME WITHOUT THEM.Read More
Perhaps it has nothing to do with the number on a page,
but instead where the moon is in the sky,
how the planets are aligned,
how much or little daylight we are currently allotted,
that alerts our bodies that
is an anniversary
of that occasion.
Come close, I have to tell you a secret: I know what your friend really wants.Read More
One way to spend this season is to fret that it’s too good to be true,
going around knocking on wood, daring not to say or even think that things are going well, for fear of waking the sleeping giant,
waiting for the shoe to drop,
spending days staring at the sky,
eyes playing tricks, convincing the brain that perhaps a glimmer of a shoelace was seen.