I’ve done my fair share of tweeting (eh, venting) recently. The constant struggle of survival with chronic illness is a challenge only truly appreciated by those who live it, day in and day out, for decades. We never get time off, and our feelings and exhaustion are valid. Add a pandemic to that, and the Covid reverberations amplify this specific pain. But, it’s not all about me.
As for here, on this blog, right now, I am all about listening. I can never write a blog post that says I truly know how it feels. I acknowledge that privilege, often dictated by zip code at birth, has affected my life and its opportunities. Although I empathize with their struggles, I would not purport to know exactly what others go through, as influenced by lenses of psychology, disease, war, socioeconomics, race, lived experience, and so much more. Frankly, we only know our own stories best, and it is a disservice to others when we claim, via logical fallacy, to represent everyone. The current headlines are an example of why.
I simply want to write a note here saying that I am listening, and I hear you. In the niche example of the diabetes world, the ripple effects of Covid-19, racism, and healthcare, combined, are a costly threat. Our society snuffs out its promising people by these intertwined inequities by design. The voices of those affected the most should guide our way as our world demands change now.
I find us at the conclusion of yet another month, and perhaps my hopes to get back into blogging more frequently have lapsed or feel too self-centered, as evidenced by this last minute post for April. The hectic pace of work, life, healthcare appointments, advocacy, and, a pandemic!!!, have certainly taken up my time lately. But I do miss this space, and connecting with you regularly. I hope that you are staying well during all of the chaos in the world right now.
My main superficial, positive takeaways from self-imposed quarantine:
- There are never enough books to read! But reading voraciously again is a nice perk.
- The show, Power, on Starz is totally binge-worthy.
- Reconnecting with friends and family via phone calls or emails
- Long, quiet walks
- I understand the need for telehealth, but it is just not my thing. I can’t wait to get back to in-person care once it is safe to do so.
- Iced coffee at the drive-thru was a bigger part of my life than I realized!
- Too much pressure to Zoom!
To be continued in the future, as health/safety/time permit:
- Much-needed vacation with friends this summer / fall
- Perhaps more blog appearances
- Coffee dates!
How about you? Stay well!
A few photos of peace from earlier this year:
Free valet for all dysfunctional pancreases
Diabetes supplies for the win
What would you be doing right now /
if you were not already doing something else /
to survive the costs of healthcare?
Tuesday precipitation brought us all together again in 2019, with folks from Twitter, healthcare, work, and beyond taking notice of the water droplets on their windshields or their Tuesday raincoat necessities. #TuesdayRain is here to stay, it seems. The first two Tuesdays of 2020 have followed the precedent thus far.
2018 provided lofty goals, ending the year with 29 Tuesday precipitation events involving rain and snow. Admittedly, I had my doubts that we could surpass those numbers in our 2019 southern New England / Boston Tuesday-rain-tracking calendar, particularly given that March 2019 was a “dry Tuesday” month. However, an end of the year Tuesday precipitation rally yielded big results; we concluded 2019 with 31 total Tuesday precipitation events! In our geographical region’s recent history, it is more likely than not to precipitate on Tuesdays.
As we collect more Tuesday data, it has been interesting to compare the calendars from different years. Often, similar trends appear in the respective months. For example, May 2018 and 2019 both experienced 3 Tuesday precipitation events, while October 2018 and 2019 each logged 4 Tuesday rain storms. Often, the precipitation events occur around the same dates in these successive years.
At the risk of sounding corny, I have enjoyed the simplicity of shared human connection through #TuesdayRain endeavors. A single umbrella or snowflake emoji, a coworker pointing at the window in awe of the weather, a trend that my friend, Krissy, and I will always be happy that we discovered together- all of that brings joy to the weekly routine of life. Thirty-one precipitation events will be a tough bar to raise in 2020, but here’s to many more.
*November Calendar photo credit: “Sunrises & Sunsets 2019 12 Month Calendar” imported by Greenbrier International, Inc.
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.