Friday, January 24, 2020

Impactful change

It was only yesterday that I was challenging us to not be so negative.

That doesn’t mean we can’t ask critical questions to find out the rationale behind things we don’t understand.

So with that, friends, I have to ask...

Has the American Association of Diabetes Educators lost its damn mind?

This week, AADE announced a name change. Anooooother naaaaame chaaaange.

This organization, whose leaders over the years I have defended as the champions of our patient community, many of whose members and leaders are my dear, personal friends, has made exceptional inroads over the last two years...changing the names of things.

I have tried to wrap my head around these big breakthroughs.

There was the news in 2018 about AADE changing the name of patient communities to “peer support communities.”


Okay, listen, several of us were angry about the tone of that one. AADE as a nonprofit does not own patient communities and we didn’t ask you to rebrand them, but fine. You want to be able to give our communities more clinical validity to your members and make them sound prescribable. I scoffed. Many scoffed. It was suggested patient advocates were blowing it out of proportion. That it would help see our support networks recommended to more of your patients. We agreed to disagree and we all moved on. Like good friends do when they disagree.

Then in 2019, the big news out of AADE was that they were rebranding CDEs (certified diabetes educators) as DESSs. DESCs? DESEs? I get it wrong every single time. Probably because it makes, quite literally, zero impact on the problems I see in treating diabetes today. It wasn’t even clear that AADE as a body had the authority to rebrand this certification.

I’ve seen justifications about how now physicians will treat educators like the specialists they are. Now they’ll respect the wide array of services these overworked and underresourced educators provide for people with diabetes.

Really? This is what the org charged with defending and supporting CDEs thinks it will take? I’m skeptical. This does not seem like an impactful change. Coincidentally, this was also when I began referring to AADE as AARE - the American Association of Renaming Everything.

Now it’s 2020 and there is a press release announcing the nonprofit’s rebranding to ADCES.

Friends, CDEs...you brave women and men who have been there for us in times of basal adjustment and prior authorization requests and “please help me figure out lunch at the office” times of need...who’s steering the ship over there? Blink twice if you need us to come get you. No questions asked.

I understand that we in the “peer support communities” aren’t the audience for these announcements. AADE/AARE/ADCES membership is. But please give some consideration to the optics of your decisions.

The population who needs you is increasing exponentially while educators’ capacity is imploding. Our access to you is impeded by restrictive reimbursement rules, especially those of us who live with T2D or Pre-Diabetes. Your numbers and geographic coverage are stretched beyond the support you are desperately trying to provide your patients. And the org specifically dedicated to supporting you in this mission seems perpetually fixated with rearranging letter magnets on a chalkboard.

A rebrand costs money. New business cards and office door plates for every formerly-known-as CDE. A new look and feel for your website. New logo marks, new brand guidances, new pamphlets, new conference identity materials.

Will a rebrand address a shrinking specialty in an exploding disease state where, more than ever, people with diabetes need your guidance and expertise managing ever-increasing-in-complexity device technologies and combination drug therapies? Where we need your steady hands to help us cover our ears to the detox-paleo-grapefruit-hot cinnamon-elimination diets in our Instagram feeds?

I’m trying to give the org, whom I have always supported and defended, the benefit of the doubt. To the world outside your bubble though, I’m sorry, but we don’t understand. Where is the news about the progress you’re making in supporting educators? Because the iceberg won’t care where you stack the deck chairs.

Much love,
Matilda
Medusa
I don’t know anymore

Thursday, January 23, 2020

Peace be with you.

It may sound odd coming from me—an atheist—but much of what I learned about community started with the priests and pastors I worked with in the more-than-a-decade I served in music leadership positions for the Catholic and Episcopalian churches.

I worked for Father John Bell as his interim director of music for six months, and as a soloist and cantor for him for several years. I learned two very important lessons from John.
  1. I had a choir member who left in a huff. I don’t remember why. I wanted to go talk to them. I remember standing with John in the vestibule as he greeted his parishioners. He said to me, “The best thing to do is let them walk away.” He was right. I took that into my leadership of TuDiabetes and other diabetes communities.
  2. I was really short-handed in the choir for the 9am service. Two people singing. That was it. I had asked him to petition the congregation for volunteers. It hadn’t worked. He told me to “ask for a number.” “I need three women and two men to join the 9am choir.” The next Sunday, the chairs were filled. More than that came. It reminded me at the time of the advice to, in an emergency, ask a specific person for specific things. You—call 911. You—hold back the crowd and give us some space. You—lift up his head. It’s much more effective than “somebody help me.”
I learned ways to not run a community from priests I worked with, too.
  1. From the priest who ran our campus ministry in college, who would snap at me, call me clumsy, or complain about how he was mistreated by people in the community. When I encouraged him, in private discussion, to turn the other cheek, he snapped that those people weren’t Christ-like. I learned that good people can be wrestling with struggles that may cloud their judgment.
  2. From the pastor for whom I ran the children’s choir who made me wait an hour in the hallway and then dismissed the efforts of the children. “Oh, did they sing on Sunday? I didn’t notice.” At the Mass he presided over. I learned that indifference and impatience were forms of hostility. And that they broke trust.
Why do I mention all of this? Because people can be very good, and also very flawed. People can be driven to serve, and still be fallible. Growing our community takes all types, at all points in their journeys.

While I don’t believe in the god these men honored, I always believed in the communities we served.

Negativity builds cheap community. It’s easy to be riled up together. To sharpen pitchforks together. To picket industries together.


It’s harder to grow together. To mature together. To nurture patience and understanding together.

I’ve learned from both the special needs parenting community and the disability community to ask “What would be helpful right now?” And “what is that experience like for you?”

What can you do, today, to help someone grow in their journey? To reach out to someone struggling? To whom might you ask those questions today?

Monday, January 20, 2020

Tap. Tap. Is this thing on?

Hello, world.

It's been a minute. Okay, so my last real post was like 5 years ago. How ya been? Who's president now? Wait. Nevermind.

Inspired by Renza Scibilia to "Stand Up," I'm back. I wouldn't be back without her. Without you. Without so many of you in this community I've done my small part to nurture and grow. You who, in turn, have lifted me up so many times.

What has changed since I left this space to go lead a nonprofit and take my first executive role? Since I moved from Dallas to San Francisco? Since I went to work for a Silicon Valley startup? Since I jumped all in on the medical device industry? Since I joined a diabetes software nonprofit? What has changed since my kids grew from preschoolers to tweens?

Everything. Nothing.

In Renza’s post (seriously, go read it), she describes the ways she had tried to be at odds with who she is. It made me think about a personality assessment I completed in my last job. I'll never forget what the assessor said to me. "Melissa, you're so sure of who you are that you're almost uncoachable."

Welp.

Let's be honest about what we're working with here then. I was never actually going to say it sweetly. Despite more than a decade of trying to challenge myself to take it down a notch, I'm just as pointed and deliberate (and righteous) as I've ever been.

So that's not new. In fact, you should expect more of that. Maybe, if we're both lucky, the wiser, world-wearier version of that. A person who has had the opportunity to drop the mic a hundred more times in larger rooms with fancier tablecloths since last I was here. A person who has hopefully learned a few new things.

I've watched some of our friends leave this earth and pass their legacy into our hands; I feel the weight of that responsibility daily. I've been privileged to be in the position to impact products and governmental policies that could help a lot of people. Sometimes I’ve been successful. Sometimes I haven’t been.

I've met thousands more people with diabetes. I think more about what they need than what we need, dear reader. I'm still obsessed with connecting people and fighting for access. The need for advocacy on these topics has heightened, not lessened.

I'm back here because no one is everywhere anymore. Platforms and social trends change. I want to nurture a living document of my diabetes thoughts. Forums are gone. Gratification is instant. Patience is thin. An algorithm decides which friends you speak to, what your politics are, and how much insulin I take.

I'm back here even though I've argued that blogging is dead.

I'm back here on my own turf because the soil is still good.

I want to grow something.


Monday, September 30, 2019

D-Parody: You Need Some Carbs Now


You Need Some Carbs Now
(a D-Parody of Taylor Swift's "You Need to Calm Down")

You’re a type 1 that I don't know
And you’re takin' shots like me but your keto,
And I'm just like, damn, have you tried this jam?

Your face goes all crazed and you freak-out
And you tell me sugar kills and you scream out
And I'm just like, "Hey, it’s PB&J”

And I ain't tryna mess with what works for you
But I've learned a lesson that stressin' and obsessin' 'bout what people eat is not cool
Cuz cakes and scones didn’t give me type 1

So oh-oh, oh-oh, oh-oh, oh-oh, oh-oh
You need to calm down, you're kinda stressed out.
I may just like ho-hos, ho-hos, ho-hos, ho-hos, ho-hos (oh)
You need to just stop. (Can't you just stop?)
Like get all that hate away from my plate.
You need some carbs now.

You like to go low carb and that’s cool,
But you're comin' at my friends like a missile.
Why you so mad?
Are you well-fed?

Moderation’s fine, we can eat grains.
Sure Paleo was fine (in the dark age).
Reading your post made me want some toast.

You just need to take several seats and then try to chew on your meats
And control your urges to scream about what somebody else eats
'Cause shame never helped with an A1c

So oh-oh, oh-oh, oh-oh, oh-oh, oh-oh
You’re way too extreme, try some ice cream.
You may need some ho-hos, ho-hos, ho-hos, ho-hos, ho-hos (oh)
You need to just stop. (Can't you just stop?)
Like get all that hate away from my plate.
You need some carbs now.

And we see you over there on the internet,
Accusing Big Carb of killing us.
But we got your back,
We all know that you just need a snack.
You need some carbs now.

Oh-oh, oh-oh, oh-oh, oh-oh, oh-oh.
You need to calm down.
You're way too stressed out.
You may need some ho-hos, ho-hos, ho-hos, ho-hos, ho-hos,
But you need to just stop (can you stop?)
Like get all that hate away from our plates.
You need some carbs now.

Monday, September 9, 2019

D-Parody: Juice


Juice
(a D-Parody of Lizzo's "Juice")

Meter, meter on the wall,
Don't show me, 'cause I know I'm high.
Rebound now from a low
And now my sugar’s in the sky.

I be pumpin’ so much sauce
Got a bih lookin' like an IV.
Beeping like a car alarm.
That's right, baby, 2-5-3.
That's how it goes.

If I'm droppin’, every glucose tab is mine.
Say don’t overtreat, you’ll end going high,
Diabetes don’t get better over time.
Heard you say: “it should be simple”, why’re you lying?

It ain’t my fault that my glucose hit the roof
While my basal was reduced.
Gotta blame it on the juice.
It ain’t my fault beta cells don’t reproduce,
And all hell has broken loose.
Gotta blame it on the juice.

Ya-ya-ee, ya-ya-ee, ya-ya-ee, ya-ya-ee
Blame it on the juice, blame it, blame it on the juice
Ya-ya-ee, ya-ya-ee, ya-ya-ee, ya-ya-ee
Blame it on the juice, blame it, blame it on the juice

Hadn’t brought a snack with me.
That hypo came on way too fast.
I was dropping through the floor.
So mama drank the whole damn glass.

That fruc-tose concentrate
Hit me like a ton of bricks.
Hold up, sugar, please.
Don't make me have to take this bitch.

If I'm droppin’, every glucose tab is mine.
Say “don’t overtreat, you’ll end up going high.”
Diabetes don’t get better over time.
Heard you say “it should be simple”, why’re you lyin’.

It ain’t my fault that my glucose hit the roof
While my basal was reduced.
Gotta blame it on the juice.
It ain’t my fault beta cells don’t reproduce,
And all hell has broken loose.
Gotta blame it on the juice.

Ya-ya-ee (ya-ya-ee), ya-ya-ee, ya-ya-ee, ya-ya-ee
Blame it on the juice, blame it, blame it on the juice
Ya-ya-ee (ya-ya-ee), ya-ya-ee, ya-ya-ee, ya-ya-ee
Blame it on my juice, blame it, blame it on the juice
Ya-ya-ee

I’m done with this CGM.
These double up arrows ain’t my friend. What?
They ain’t my friend. What?
I better take insulin.
I gotta go slow down this up trend. What?
This up trend.
(What'd you expect me to say?)

It ain’t my fault that my glucose hit the roof
While my basal was reduced.
Gotta blame it on the juice.
It ain’t my fault beta cells don’t reproduce,
And all hell has broken loose.
Gotta blame it on the juice.

Ya-ya-ee (Yay-ya), ya-ya-ee, ya-ya-ee, ya-ya-ee
Blame it on the juice, blame it, blame it on the juice
Ya-ya-ee (Ya-ya-ee), ya-ya-ee, ya-ya-ee, ya-ya-ee
Blame it on the juice, blame it, blame it on the juice.