30

This month I marked 30 years of living with type 1 diabetes. Collectively, my family has 55 years of experience with T1D between myself and my relative. In the past, I would have calculated and best-guesstimated the hundreds of thousands of needle pokes incurred over these diabetes years. So much of our time is spent analyzing numbers and trying to find meaning in it all.

My 30th diaversary, however, was mostly met with ambivalence on my part. When a friend texted me to be kind about this milestone of an anniversary, I replied succinctly, “Thanks. Honestly, today has just been another day. And I’m okay with that.”

This is not to say that I’m burnt out, or ungrateful, or anything else negative and patient-blaming which healthcare so often unjustly engages in. Rather, quite the opposite. I was ambivalent simply because my interests have shifted over time, and diabetes no longer takes up the bandwidth that it once did in my mind. I still struggle and suffer from the nonstop burden of diabetes management as complicated by many external barriers to care. But it’s more of a rolling with the punches experience now, rather than constantly lacing up my gloves for another round. There is peace to be found in the rhythm of acceptance, and moving towards what I value no matter what.

I also recognize the great juxtapositions here:

30 years of diabetes is a huge deal defining decades of strength and resilience. We should celebrate those achievements and express thankfulness for our supporters.

But we should also acknowledge that none of this is fair. The dial hasn’t moved on diabetes-land in the ways that we need for every person with diabetes, everywhere, to have good quality of life. We still need a cure. We still need better insulin treatments, and we absolutely need these options to be readily accessible and affordable for everyone. No more jumping through hoops; just commonsensical, “Can I quickly access what I need to live well even at 3:43 am in a snowstorm?” sort of standards of care. We’re unfortunately still far from these equitable meters of QoL.

It is not lost on me that many people do not get a chance to write a 30th diaversary blog post as they may have hoped. Factors such as missed or delayed diagnoses fueled by societal stigma and misunderstanding of diabetes; the inextricably intertwined challenges of emotional health and chronic disease; effects of socioeconomics, race, class, gender, education, environment, war or peace, and much more; and, most pressingly, global access to insulin / insulin pricing all weigh heavily on my heart today. Those who have died slowly and painfully from DKA, particularly, remind me that even though ambivalence at 30 years of surviving an unrelenting disease is acceptable, my own years cannot be in vain. My story could have begun and ended differently. Others were not so fortunate, and our advocacy must honor them.

Despite the daily challenges posed by diabetes, I am still here, through hard work, yes- but also through lots of luck and privilege. We are allowed to be cognizant of each of these contributors to diabetes care, to be proud and happy when we feel well and achieve our goals, while simultaneously mourning the support we lack personally and universally in our diabetes care trajectories.

I feel all of that today.

November 2020

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.

“Covid Walks”

I’d be remiss to find ‘silver linings’ during a pandemic that has forever changed our world and cost us so much. But, I am admittedly grateful for a revived exercise hobby- a socially-distanced, aptly titled “Covid walks” routine. A friend and I traipsed all over New England during the nice summer and fall climate, taking moments to stop and watch the leaves turn and the waves break, and perhaps, to appreciate those subtleties more so than in the past.

Here are some favorite views:

6.

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.

Hugs,

Ally

Masks

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

anyway?

Listening

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.

 

Much love,

Ally

April as a List

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

 

Superficial Cons:

  • 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!