5

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.

Ally

 

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