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.
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)
- Larry San Nicolas (60 years old; Army Veteran from Guam)*
- 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:
- 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.
- 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.
Very Light, No Sugar celebrates its fourth blogoversary today. I am typing this while sipping on a blueberry coffee with cream, of course. Some things never change…
Healthcare is keen on data, and I am humbled to note that VLNS has been read in 104 countries and counting since my first post in 2014. We surpassed the 100 countries mark this year, a feat that I never could have predicted those 4 years ago when I was sick on the couch with a defective insulin pump, simply setting out to blog in search of answers, advocacy, and support.
While my personal healthcare and advocacy journey has been marked with the typical waxing and waning, highs and lows analogous to life with type 1 diabetes, overall I am happy that this space exists. Where we go in the future is to be determined, but VLNS will forever be a part of my heart. And I am grateful for those of you who have loaned VLNS some space in your hearts as well.
I have admittedly been quieter on social media lately, and particularly, on this website. Perhaps my semi-silence is my own subconscious form of protest, the loudest way to express that I will never be okay with the clanging tambourine of the status quo in diabetes land. The older I get, the clearer it is to me that we have our work cut out for us. Perhaps I am the rogue #doc voice still figuring it all out, and I would be remiss to pretend to be anything else as a blogger.
Simply being alive, ~27.5 years after a T1D diagnosis, with health insurance and access to insulin, puts me in a very different position than most of the people living with diabetes worldwide. I pledge to continue to advocate for all of us. Sometimes that means taking a step back in order to stand up, to challenge the way things are and to remember the human faces behind why we need drastic change. Sometimes that means recognizing that my own voice doesn’t have to be the loudest in this moment; in fact, it is easier to hear the community vibe when I turn my own volume down and listen.
There are pillars of truth that have not changed in my 4 years here:
We need a cure.
We need inclusive community that is not scared of entertaining various viewpoints, that can agree to disagree, that lifts up rather than puts down. We need each other.
We need megaphones, and at times, we may need space.
We need a free, unbiased press and a healthcare industry that values humanity above all else; we need healthcare players who recognize that sometimes the will of The Whole may differ from the corporate office views.
We need affordable, accessible insulin.
We need blogs and tweets and advocacy actions. Look around. It’s working. I’m proud to call many of you my friends and fellow advocates.
Thank you for allowing Very Light, No Sugar to be part of the #doc fabric for the past 4 years. The diabetes landscape may change, for better or for worse, but our roots will always be strong.
Thank you to those who participated in the infusion set online research study previously detailed here. Thanks also to those who looked into participating, and to those who shared the screener link.
As many of you know, insulin pump infusion set functionality is a topic close to my heart. Understanding more about user experience is invaluable to the future of diabetes care. I hope to call on you again for future opportunities.
Thanks for doing your thing!