Monthly Post

Is it obsessive-compulsive behavior to post here each month for the sake of writing somewhat regularly? Or is it simply hope? Perhaps this- once a source of joy, a shared mission, will feel that way again, somehow.

another month

by which to create

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Representation

If you step in the logical flaw rabbit hole

of proclaiming to represent

ALL PEOPLE WITH DIABETES!!!!!,

then the least you can do is

own it.

 

Was your six-figure “non-profit executive” salary there

to represent Shane Patrick Boyle

when Go Fund Me fell fifty dollars short?

 

Have you ever seen a human being in DKA,

breathing labored, blood poisoned?

Would you look her in the eye

and still have the audacity to suggest,

“This could all be easier

if you just took the bus to Walmart,

bought cheap insulin there,

took a wild guess at a 3:52 am dose

of one of the most powerful Rx’s on earth.”

 

Her breathing is labored.

Her blood is poisoned.

There is no more room on this bus.

 

I’ve written long enough

to know that I, too,

have made mistakes.

The ‘disease warrior’ metaphors

The representation claims

Forgetting to check my privilege

at the coat rack

Running my mouth too loudly

to listen

 

How can we pretend to represent

all people with diabetes

when we have strong Wi-Fi connections

the acquired ability to read and write

the color of the skin we were born with

the restocked fridge,

while so many of our diabetes brothers and sisters

are dying slowly and painfully

without access to the prescribed air

we breathe?

 

Our stories are the only ones we can tell fully.

To say otherwise is to snuff out others’ lights

which have already borne enough pain.

 

There has to be a better way

to make room on this bus.

 

 

Feelings

“A doctor once told me I feel too much. I said, ‘So does God. That’s why you can see the Grand Canyon from the moon.'”

-Andrea Gibson, “Jellyfish”

#TuesdayRain

There are -or at least there should be- a few main constants in life:

Church

School

Work

Therapy

And Weather

On many Tuesdays in 2017 and 2018, I awoke to a single umbrella emoji texted from one of my best friends from college, Krissy:

And so, #TuesdayRain officially became ‘a thing.’

Tuesdays are notoriously busy- often jam-packed with work meetings, extracurricular activities, medical appointments, sporting events, dating, and the like- for me and my fellow Millennial friends.  Eventually we noticed that during our hectic Tuesday pace, there was usually one predominant theme: rain.  And in the winter, there was snow, which is just cold rain after all.

In 2017, Krissy and I lamented that we had not tracked the Tuesday weather on paper.  The more we mentioned this phenomenon to others in our local area, the more heads nodded in confirmation of requiring raincoats on Tuesdays.  In 2018, we resolved to document the Tuesday precipitation events on a calendar.  Although analyzing the weather patterns of every day of the week would make for a more scientific inquiry, it surely would not be as fun.  There’s just something about solo Tuesdays.

 

“Beautiful outside, isn’t it?” the parking lot attendant quips as I pull my car into the safety of the dry garage.

“It rains almost every Tuesday!” I retort, sprinting towards the office doors.

 

“Fun fact: Did you know that it has rained for 11 out of the past 12 Tuesdays?” became the most creative introductory line on dating apps this fall season, in our humble opinions.

 

The rain is my loyal companion when commuting to and from Tuesday doctor’s appointments in Boston traffic.  No matter the health prognosis, life somehow goes on for the moment, as evidenced by the steady cadence of the droplets falling on the windshield.

“Look at that sky!” is how my doctor and I often begin our sessions.

 

In 2018, it precipitated on 29 Tuesdays in southern New England / Boston.  November 2018 is particularly notable, having rained every Tuesday that month.  For the record, the first day of 2019 was a Tuesday.  And of course it rained!  Our meticulous calendars reflect this data.

Yet, I also know this because my mind hones in on such dates and patterns, weaves the world together in this way.

img_0323

I spent the larger part of my “adulting” years, unfortunately, yelling at God.  “Why does my mind have to be stuck on that thought, that painful memory?!!” and so on.  I lost so much time engaging in these cycles while somehow managing to survive, and, even, to succeed, at various endeavors.  Now, I simply try to be cognizant of this concept and to move forward.

Despite the chaos, however, I have still experienced brief moments resembling peace, rare times when my mind was so fixated on the colorful pattern of the Oriental rug or the pitter-patter of the rain that I finally knew quiet in the midst of the loud.

#TuesdayRain has been that calming song, that unifying presence in the community, that dependable force no matter how turbulent the times.  Truly good friends, good doctors, and heck, even good parking lot attendants, are hard to come by.  How blessed are we to get to weather the storms in awe together.

 

 

*Calendar photo credits: Salve Regina University 2018 Calendar

In Memoriam, continued

Last year’s World Diabetes Day post honored those we have lost too soon due to insulin access issues, kicking off the tradition of a bittersweet yet necessary memorial.  Let’s take a moment to honor those names again, as well as additions to the list, for WDD 2018:

  • Alec Raeshawn Smith (26 years old; USA)

 

  • Shane Patrick Boyle (48 years old; USA)

 

  • Kevin Houdeshell (36 years old; USA)

 

  • Antavia Worsham (22 years old; USA)

 

 

  • Others worldwide whose names we do not know

 

*Stars indicate new names added to this year’s WDD blog

 

I know that my list this year is not fully extensive.  While I have seen some news articles about insulin access deaths over the past 12 months, I admittedly do not know every name, nor many relevant details of each story.  It is not my prerogative to add further pain to families who have lost loved ones by hypothesizing here.  That said, if you have applicable names which you wish to add to our memorial, please contact me and we can update the list accordingly. 

On World Diabetes Day 2018, I consider two main points:

  1. It remains unconscionable that there is no cure for diabetes.  Don’t ever expect me to be quiet about it.  😉  We deserve a better world free from diabetes.
  2. Mostly, though, I reflect on this headline: Sword-wielding Grandview man killed by police may have needed insulin

I’d argue a more accurate headline would read: DISCONNECTED HEALTHCARE SYSTEM CONTRIBUTES TO YET ANOTHER PREMATURE DEATH OF A KIND PERSON WITH DIABETES

I look at the picture of Mr. Nicolas included in the news link above, and I see a human being.  I see a person with diabetes.  I see one of us.

I see a healthcare system that failed someone who sacrificed for us- a Veteran.  Although there is an ongoing, polarized debate about police training in our country, I do not write this blog to fuel that discourse.  I imagine outcomes like Mr. Nicolas’ case are always excruciating, no matter the perspective.  As a general rule, I do not speculate on others’ mental health, so that won’t happen in this blog, either.  The story speaks for itself, loudly and clearly.

When this article first circulated on Twitter, I noticed some bold commentary- the usual, “That could never be me or my loved one!” rationalization game that we all use to appease our own emotions from time to time.

“I’d never own one sword.  Never mind two!”

“My blood sugar doesn’t get that out of whack!”

And the infamous, “Just get your insulin at Walmart, Susan!”

Ahem.  Our “privilege goggles” have fogged our points of view again.  Let’s get real: This could be any of us given the perfect storm of social determinants of health (SDOH) and circumstance.  If not for our respective privileges of race, socioeconomic status, diabetes industry ties, psychosocial history, luck- whatever it may be- we very easily could be or could have been in Mr. Nicolas’ shoes, with swords in our hands, begging for our lives in the only conceivable remaining way.

Reflect on the worst low blood sugar of your life, when you were completely disoriented, slobbering on a jelly donut while the room spun in circles.  Or, perhaps, remember when you were diagnosed with type 1 diabetes, in diabetic ketoacidosis (DKA), with a blood sugar of approximately 903 mg/dL.  Scientifically-speaking, our brains were affected in both of those scenarios.  We were not thinking clearly.  We were desperate for help, and health, and relief.

Alas, when I look at Mr. Nicolas’ picture in the sword-wielding news article, I don’t see a man who was having a great day and picked up two swords for the heck of threatening others.  I see a man who had to wield swords in order to be heard, for a moment in time.  Without being able to obtain insulin, he was going to die.  The tragedy is that before our society offered proactive help- affordable, accessible healthcare; emotional support resources; compassion rather than judgment- Mr. Nicolas’ life was lost too early.

How very much work we have left to do.

 

My prayers are with those missing loved ones gone too soon, all for reasons circling back to healthcare access.  The numbers and the stories are too many over the years.  The grief is overwhelming every time.  By renewing attention to Mr. Nicolas’ story today, I do not intend to refresh the anguish of his family and friends.  Rather, I want them to know that they have someone in their corner who believes them, and a world full of diabetes advocates who echo their passion to enact meaningful change.

May we continue to think of you and honor your stories, on World Diabetes Day and in all advocacy ventures going forward.