Merry Christmas and Happy 2020 from VLNS and friends! Wishing you peace for the holidays and in the upcoming year.
What have I learned during this November, another ‘National Diabetes Awareness Month’ (NDAM)?
Call me jaded, but I am already quite aware of diabetes every time I poke my skin with one of hundreds of thousands of needles involved since my T1D diagnosis almost 29 years ago; or, when tweeting out the bat signal during a 4:07 am low blood sugar yet again interrupting a healthy sleep cycle, and seeing dozens of Twitter folks nodding in solidarity.
During NDAM this year, I felt a sense of “been there, done that.” Frankly, at times, I did not even like this month- having the unwanted spotlight on me per se, as one member of the diabetes demographic.
November has its merits: sharing the warning signs of diabetes to prevent future death and disability related to preventable DKA; highlighting the high price of insulin; detailing why #weneedacure; finding much-needed new voices here in the diabetes community; involving people without diabetes in the diabetes cause. All good stuff.
I suppose for me, personally, the pivotal “woke” advocacy moment did not occur this November, though. Rather, it was in September 2019, when watching the peaceful protest video of Nicole Smith-Holt, hearing the anguish in her voice as she said her son’s name then, and continuing to hear it resonate now. That is good advocacy- the kind that wakes you up, makes you think many months later.
Some media coverage of that September citation moment was passive in its reporting. ‘Protester tripped and fell into a cop car’ sort of stuff. Far from it. Given the circumstances, Nicole and other advocates see a need for change, and they bravely and gracefully take action to get us there.
During November, I shared a few random tweets about life with diabetes, the hope for a cure, etc. But mostly, I tried to do more listening than talking this time around. As I tackle other challenges lately, diabetes has not taken up as much space in my world. Perhaps that is a change of interests, my admitted privilege, or a combination of these and other factors.
But at the end of the month, it’s not all about me. It’s simply about making our world better for all people touched by diabetes- honoring the past, present, and future. Whether it is November or December, we have no other choice but to continue showing up to the diabetes fight.
Perhaps, here in the informed online diabetes realm, we are aware enough already.
The real question may well be: Are we awake yet?
I am excited to join HealthiVibe’s patient steering committee, composed of key opinion leaders from diverse areas of healthcare. Together, we are dedicated to driving the patient advocacy perspective in clinical trials and drug development. My disclosures can be found here.
I am not shy about my feelings towards a type 1 diabetes cure: We are long overdue. Clinical trials and drug development get us that much closer to improving quality of life for people with various health conditions. I appreciate the opportunity to work with the creative minds at HealthiVibe and on the steering committee to foster this greater cause, to hope in a better future.
Many of my close friends are Veterans and Service Members. They admirably answered the call to serve a purpose larger than themselves. They sacrificed their time during deployments, as did their families who supported them from afar. They, perhaps, went through physical and emotional pain while in service, and afterwards. They signed up when not everyone is brave enough to do so. They knew that their contributions could make a positive difference in the world. They are modern day heroes and heroines.
I view clinical trial participation and drug development similarly. Those who sign up for these scientific inquiries sacrifice their time. They take the pledge knowing that not everyone else does, and that there may be emotional and physical effects on their lives. They show up anyway because they can make a difference. Even if a clinical trial does not yield the best case scenario results – diabetes or cancer is not yet cured, for example – we still garner invaluable information from the process. We learn more about what works and what does not. We cannot get there without those who volunteer, who serve a purpose larger than themselves much like my Veteran and Service Member friends.
We are currently at a crossroads in healthcare. On one side, innovation and opportunity are promising. On the other, access and affordability remain real world barriers to lifesaving and life-sustaining treatment. We need cures and attainable, high-quality healthcare for many conditions, from type 1 diabetes and more. And to get there, we need clinical trials and drug development to meet those in the trenches where they are, to lift up the mission for improved quality of life for all.
I welcome your insights as I work closely with HealthiVibe’s steering committee to advise on such matters. Thank you to HealthiVibe and to the members of the steering committee for the opportunity to collaborate.
Very Light, No Sugar recently celebrated its fifth blogoversary. I am forever grateful for the people in 109 countries(!!!) around the globe who have visited here.
A lot has changed since I ventured out into the healthcare advocacy realm 5 years ago. Having been diagnosed with type 1 diabetes (T1D) just before my third birthday, advocating has always been in my blood, literally and figuratively. I still believe that #weneedacure. And I still believe that all people with diabetes, or any other health condition, deserve dignity through accessible, affordable, high-quality care.
I marked my fifth blog anniversary by waking up in a stupor, thanks to skunked, expired insulin contributing to high ketones. “I’m so over all of this,” I lamented through a series of tweet-and-deletes. The irony was not lost on me. Diabetes waxes and wanes and manifests over a spectrum. At the heart of it all is a human being simply wanting to improve quality of life (QoL), to be in the green on those numbers charts, in the “doing well” category.
If I am being totally honest, although I look back and cringe at some of the early, corny blog posts, I am jealous of that former author, that version of me. She had so much innocent hope in the future, in the good capabilities of healthcare. Perhaps time in the trenches has jaded me over time. I have seen the good, the bad, and the ugly in healthcare advocacy. I still believe in the good. But I have removed my privilege blinders to be more realistic about the various barriers to care.
Personally, I have survived a lot that I never anticipated, and I did so very publicly. Sometimes I wish I could crawl back under my rock, and do the whole survival thing quietly and humbly. But there is another part of me that is committed to keeping it real, to voicing the raw truths even when it is painful to do so.
There are so many good eggs in diabetes-land, many of whom I have enjoyed collaborating with or sharing a coffee / beer in person at various events. Others are Twitter friends, known by their creative @ handles.
The longer I am a piece of this diabetes online community fabric, though, the more I notice the glaring discrepancies between the Haves and the Have Nots. I acknowledge my own great privilege due to graduate education and job, while still recognizing that diabetes is pretty damn difficult no matter what. I cannot fully understand the plight of those with less than me, nor do I purport that I represent all of them. But, I do have legitimate concerns for our future.
How can we help The Whole in diabetes if we do not lift up all voices? We celebrate amazing tech innovation for some, while others die painfully of ketoacidosis, their breathing labored, because insulin is not readily available through no fault of their own. I look at all of this and wonder where I fit. Have I assumed the role I was supposed to play? Have my interests moved on to mental health? Do my interests need to be separate and distinct? (Heck no).
In the words of my favorite poet, Andrea Gibson, “It hurts to become.” I have done a lot of becoming over these past 5 years. And, as a community, we all have become, too. We have more to do. More voices to hear. More time to listen. More lives to save.
I do not know where the next 5 years will lead. Lately, I have been focusing on the here and now.
Thank you for letting me be here, with you, riding the wave while it lasts.
Much love, always.
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”