Flag in the light
“The moon is a kite.” -Andrea Gibson
Sky meets concert
To be continued.
Flag in the light
“The moon is a kite.” -Andrea Gibson
Sky meets concert
To be continued.
have been updated here. Please see 2019 Updates section for more information. Thanks in advance for your support.
The healthcare advocacy world swiftly teaches you about vulnerability. By virtue of showing up, you innately care. You meet wonderful, kindhearted people- those friends you just know will go straight to heaven. And sometimes they are gone too soon, and we feel that raw emotion of loss, here, on this earth. We are suddenly more thankful that we paused for a moment during the fun to take a group selfie, to remember that day.
Alex and Kim, you are both on my mind and in my prayers a lot this week. May we learn to be as graciously brave and good as you.
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.
by which to create
If you step in the logical flaw rabbit hole
of proclaiming to represent
ALL PEOPLE WITH DIABETES!!!!!,
then the least you can do is
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
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
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.
“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”
to be well
very much so
There are -or at least there should be- a few main constants in life:
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.
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
Merry Christmas and Happy Holidays! May your ugly/cute sweater game always be on point!
See you in 2019!
Ally and Reese
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:
*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:
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.