In Memoriam

  • Alec Raeshawn Smith (26 years old; USA)

 

  • Shane Patrick Boyle (48 years old; USA)

 

  • Kevin Houdeshell (36 years old; USA)

 

  • Others worldwide whose names we do not know

 

 

This list honors those confirmed to have died prematurely due to healthcare inaccessibility and the high costs of obtaining insulin.  Sadly, these deaths occurred in the 21st century, at a time where cutting-edge treatments and healthcare benefits are hot topics.

We can and we must do better.

 

While I am normally shouting from the rooftops for a diabetes cure, this year feels different.  The diabetes community will never forget the names on that list, which speaks to their continued advocacy even after death.

My one ask on World Diabetes Day (WDD) 2017 is this:

Let’s not add more names to this list by the next WDD, or the next one, and so on.  The clock starts now.

 

The best memorial we can provide for those named here is to keep that list stagnant through our collective efforts.  Whether you identify as a fellow person with diabetes; someone who loves a person with diabetes; an employee of Pharma / PBM (pharmacy benefit manager) / insurance company / healthcare entity; an advocate; a non-profit leader or volunteer; an elected representative; a healthcare provider; or simply a human being with a heart, we must actively address this issue, together.

All politics aside, the only meaningful, mutually exclusive interests when it comes to insulin are life or death.  Particularly in the past year, we have encouraged a more open dialogue among many parties in the healthcare equation.  I hope that today reinvigorates us to keep moving that dial forward, toward more equitable opportunities for survival and quality of life for every person touched by diabetes.

There are many blog posts and articles out there detailing how this can be done effectively.  My little piece of WDD advocacy is not to reinvent that wheel today.  It is simply to ask us to reflect on lives lost too soon, and on so many others who fight convoluted healthcare systems all over the globe in search of insulin.

Keep saying their names.  May we hold their stories closely today, and always.

 

 

If you know of other names we can honor and remember here, please contact me to update the list.  Thank you.

 

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Explanation of Benefits

THIS IS NOT A BILL!!!
(Thank God)
This is simply the preface to the bill
so that you can be prematurely pissed off
about who will be taking away your money

 

The EOB outlines the costs
What you owe the doctor
What your insurer owes… someone
What debt your existence owes
to a society that doesn’t really care

 

That Advil pill at the office even though
there’s Advil in a Ziploc in your purse?
Ten dollars. The cup you pee in?
Five ninety-five per ounce
Don’t spill it when you close the window.

 

Does a smile at the reception desk
bankrupt the operation? Imagine a world where
insurance cards do not dictate our worth-
where compassion is doled out, unmeasured
and it’s okay to come back for seconds.

 

Can we quantify the waiting room tears?
The traffic, the tropical island vacation
with family swapped out for appointment slots.
The doctor who is not seeing her lunch break
will see you now, instead.

 

You both are tired of fighting
a system that feels it is better to explain
“benefits” than to explain why
none of this is fair, why your pain
will not break with the fever.

 

We can’t explain why the cancer spread,
its roots strangling the beating heart.
We can’t explain the silent prayers
sent up in parking garages late at night
when the city lights blink off.

 

The explanation of benefits is simple, really:
Sit with us, outside on the sun-bleached bench
On what our brains will dub the Bad News Day
where the whole world stops and all that is left
are the parking garage prayers said outside, together.

 

Notes

My friend with a high IQ and a poor memory
carries a journal in his back pocket
in which he scrawls seemingly-important
information for the future
gathered from local bars
in the present.

 

Liked: new hipster IPA at Main St. Pizza

Disliked: third slice of pepperoni following 7 new hipster IPAs on a work night

 

I’m big on notes, too.

 

Neon yellow Post-Its decorate my cubicle
Piecing together someone else’s life
Confirmed PTSD stressor: IED blast
resulting in multiple casualties from unit

 

The note in my head remembers that disinfectant
only works on wounds that are visible

 

The notes in my purse
are things I’d like to say at therapy
but don’t always
It’s more organic
to just vomit out words instead
and see where the path takes us

 

The note for Twitter has a lengthy title-
People in the U.S. who have died
due to lack of insulin access:

 

There are three names that we know of
And honor where we can
We hope that note stays stagnant
Never updated again

 

The To-Do list reminds you that
Life’s too short

 

The doctor’s electronic health record
reveals the same thing it always has
Diagnostic codes, plus an afterthought
She’s too smart for her own good and
has made this harder than it has to be

 

The grocery store menu doubles as
a Millennials’ dating app:
-Something healthy
-Something fun and easy

 

The footnote is the hat tip to
Someone likely smarter than you
Whose brain imprinted upon the earth first

 

The Notebook set the highest bar

 

The tattoo was supposed to be a Bible verse
about how nourishment is felt deeper
if you’ve known hunger beforehand

 

The birthday card note reads
Here’s a cute animal photo!
I hope this year is better
You deserve to be happy

 

Broken Heart Emoji

Human beings are stretched too thin

She reaches for the book on the top shelf

her hands and her pride held high above her head

 

Sweet surrender Don’t shoot Don’t shoot

The sternum makes a loud, decisive “pop.”

A release of air, and her arms fall

 

Is this where the threads holding it all together finally snap?

where the aorta prominently leans to the left

in the broken heart emoji

 

Like an iceberg that exits from Antarctica,

A break. There is a family of penguins on the mainland

warm, bellies full of food, together.

 

There is the lone penguin hitching a ride on the drifting iceberg

waving its wing as the current moves it out to sea

except it’s not a cartoon and you are the penguin.

 

Where does it hurt, and why?

Here, she taps her chest- and I don’t know.

Plant the flag on the left side

 

Of the broken heart emoji

There is a lone penguin on an iceberg

holding the flag, shooting up the flares

 

Nodding, this right here is the spot

the rescue mission is looking for

where the heart still beats

 

 

3!

Very Light, No Sugar is celebrating its third blogoversary!

Thanks to those from all over the world (99 countries!) who have read my website over the past 3 years. How humbling to see that our words are able to reach so far, and that we remain unified in our mission to kick diabetes to the curb.

This year provided different avenues of healthcare advocacy for VLNS.

Reese joined our ranks!

The Coffee Dates interview series was a big hit, and our strong resolve to make insulin accessible and affordable was a highlight topic.

I am grateful to have traveled to Indy to participate in Lilly’s insulin access workshop at their corporate headquarters in April.  (Yes, I still intend to blog on this; yes, I’ve drafted the blog many times, in my head and on paper; yes, I have disclosures: Lilly covered my travel, lodging, and meals.)  More to follow, but briefly: It meant a lot to me to see the makers of and the history behind insulin firsthand, and to be able to advocate at that level for a better diabetes world.

Also new this year, VLNS has dabbled in No Rules (free verse) Poetry.  Poetry is fluid; it is not always autobiographical; it allows us to explore beyond the usual confines of writing. I am super excited for my tickets to see Neil Hilborn during his upcoming, mostly-sold-out U.S. tour!  Mental health and poetry- these are a few of my fav-o-rite things right now, and no one does them better than Neil.

On that note, I believe strongly that sometimes our best advocacy is to simply be honest- even brutally so. Do I have regrets about blogging? Frankly, yes.

If I could go back in time, I wouldn’t have been so corny when first starting out in the DOC. (“We are diabetes warriors, waging a cliche battle, we will overcome, ahhh!”).

A hard lesson in reality this year is that sometimes, no matter how tough your armor, diabetes and other stuff still hurt like hell and feel like losing more than winning. Occasionally, I wish I could crawl back under my little rock and regain my privacy and my life pre-blog. Or that there was a non-live-tweeting-your-emotional-rollercoaster space where one could simply shout at the wall.

There are a lot of asks in advocacy, and it is hard to say no. But advocacy needs a better balance- taking our time (and having our time respected) when experiencing too much at once.

No matter what, I will always be appreciative of this website and its following. And I hope year #4 is productive and meaningful for all of us.

Cheers!

-Ally

 

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Tire Pressure

My head hurts

The ache has been there

for a long time now

My heart hurts

The ache has been there

even longer

 

When I tried to voice this

out loud, the words

hovered in-between

the air and my tonsils

like this:

 

“I don’t feel well.

I’ve felt this way for

awhile.”  (Forever).

 

“Let me check the

air pressure of

your car tires

before you drive

away,” he said.

“They’re fine.”

“I’ll check anyway.”

 

As if the quick fix

we’re all looking for

could be quantified by

pounds per square inch,

like a car tire or

the DNA of a human being.

 

Where is the Emotional Bacitracin?

To refill our souls the way

the air plumps up the tires,

so that they can traverse the

great expanse of life

leaving their mark in

the fullest possible way.