And so concludes National Diabetes Awareness Month (NDAM) in the midst of a pandemic…
Staying home as COVID-19 rages on has given me much time to ponder the juxtaposition of how I used to feel about November in the early days of my own diabetes advocacy journey (rah! rah!), versus the ambivalence I feel lately. Perhaps the pandemic and our general societal burnout plays a role. Perhaps I’m just not as into diabetes advocacy anymore because it is not as new, and after almost 30 years of diabetes, I am sick of hearing about diabetes. But, mostly, it boils down to the very fine line we straddle during November: how we want others to learn more about the seriousness of diabetes, but we shouldn’t want anyone speaking on behalf of anyone else- whether the speaker has diabetes or not. I appreciate well-intentioned friends who want the world to be better for me and all people with diabetes. However, I never want November to be a pity party on my behalf. So this year, I didn’t say much.
The best advocacy I encountered this month was from diabetes families and individuals who have endured more than anyone should ever have to: rationing due to insulin pricing, premature complications and deaths, major life choices affected by the cruel burdens- financially, physically, emotionally- which diabetes constantly brings to the forefront, and much more. I wish none of these factors hurt us, but the reality is that these stories from the source are the most telling from November, or any other day in the life with diabetes. So, thank you to those who bravely advocated this month. You said it all far better than I could have, and during a life-altering pandemic, nonetheless. May your words reach those who especially need to hear them, and may more good change come for people with diabetes because of you.
Very Light, No Sugar celebrated its sixth anniversary this September. Every year I am humbled to remember that this website has been read by people in more than 100 countries worldwide. Other aspects of life have taken up more of my time and energy in recent years, and I have certainly reduced my blogging frequency. I am slowly learning to accept that perhaps this is just how the tide rolls sometimes, yet I still cannot quite let this blog go completely.
I’ll be honest: I feel a bit out of the loop in terms of DOC stuff lately. Snippets on Twitter allude to the latest in DOC news or passionate talking points, and I sense the gist of the backstory but do not quite know it all more often than not. Again, that is okay. Now is others’ time to shine and my time to listen. But it is not an excuse to be complacent on my part when there are inequities in diabetes, and healthcare at large. We can definitely do better, and although I may not be as vocal as I once was, I am still rooting for the good eggs and a better world for all people with diabetes.
Thank you to those in our community who have become friends over the years, those who have been along for the full ride- the ups and downs of life akin to a wild Friday night Dexcom graph, and to those who care about improving our quality of life throughout it all. Here’s to many more years together.
If it is too much to wear a mask
for thirty-four seconds
in the peppers and carrots aisle,
Imagine what it feels like
to stab your abdomen
with a gigantic Dexcom CGM needle
every week or so,
Taping a foreign device on your body
through showers and swimming pools,
on your wedding day
donning a mask again at happy hour
To be privileged by virtue of the pain
we don’t discuss
The incessant buzzing in your ear
that something is almost always ‘wrong’
What if we were just kind enough
to care about it all
about each other
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?