November

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.

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Awake

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?

In Memoriam

  • Alec Raeshawn Smith (26 years old; USA)

 

  • Shane Patrick Boyle (48 years old; USA)

 

  • Kevin Houdeshell (36 years old; USA)

 

  • Antavia Worsham (22 years old; USA)*

 

  • Others worldwide whose names we do not know

 

 

This list honors those confirmed to have died prematurely due to healthcare inaccessibility and/or* the high costs of obtaining insulin.  Sadly, these deaths occurred in the 21st century, at a time where cutting-edge treatments and healthcare benefits are hot topics.

We can and we must do better.

 

While I am normally shouting from the rooftops for a diabetes cure, this year feels different.  The diabetes community will never forget the names on that list, which speaks to their continued advocacy even after death.

My one ask on World Diabetes Day (WDD) 2017 is this:

Let’s not add more names to this list by the next WDD, or the next one, and so on.  The clock starts now.

 

The best memorial we can provide for those named here is to keep that list stagnant through our collective efforts.  Whether you identify as a fellow person with diabetes; someone who loves a person with diabetes; an employee of Pharma / PBM (pharmacy benefit manager) / insurance company / healthcare entity; an advocate; a non-profit leader or volunteer; an elected representative; a healthcare provider; or simply a human being with a heart, we must actively address this issue, together.

All politics aside, the only meaningful, mutually exclusive interests when it comes to insulin are life or death.  Particularly in the past year, we have encouraged a more open dialogue among many parties in the healthcare equation.  I hope that today reinvigorates us to keep moving that dial forward, toward more equitable opportunities for survival and quality of life for every person touched by diabetes.

There are many blog posts and articles out there detailing how this can be done effectively.  My little piece of WDD advocacy is not to reinvent that wheel today.  It is simply to ask us to reflect on lives lost too soon, and on so many others who fight convoluted healthcare systems all over the globe in search of insulin.

Keep saying their names.  May we hold their stories closely today, and always.

 

 

If you know of other names we can honor and remember here, please contact me to update the list.  Thank you.

 

*This post was updated on April 26, 2018.

 

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November, Polio, and Diabetes: A Lesson on Keeping the Faith

My grandfather was cured of polio as a child.

One summer day in high school, my friend pulled me aside at a barbecue and innocently asked, “Why does Papa have one skinny leg?”

“Polio,” was the only answer I could give.

His leg is atrophied from the polio, but the bounce in his step overrides the slight lag in his stride.  Life is good.  Family, friends, pasta, and red wine.  What more could an Italian grandpa need?

According to my relatives, Papa was blessed while riding on a parade float during the Feast of the Three Saints.  The polio disappeared after that.  I always thought that Jonas Salk played a hand in his cure, but perhaps I just really like the aspect of vagueness.  That’s where the faith is found, after all.

I will accept nothing less than a diabetes cure in my lifetime.  Plain and simple.  That faith will always be here.  When I am cured, I will hold onto that faith until every individual worldwide who is touched by diabetes receives the same renewed membership at quality of life.

Type 1 diabetes has dwelled in my body for almost 25 years.  It has undeniably left its mark.  Freckled fingertips.  Dexcom rashes.  Bruises galore.  As one friend recently joked, “You might want to leave those details out of your Tinder profile!”  Very true.

Diabetes has permanently affected my life, and yours.  I would be naïve to think that after 25 years, a cure will eradicate all of those diabetes handprints.  It won’t.  Some of the damage is already done.  But curing diabetes is also not all about me.  If I am going to be on this earth as a diabetic, if I have endured this crap for 25 years, if I know darn well how unrelenting some days are- then I cannot sit back and be okay with this in the 21st century.

We have the scientific brilliance to cure this disease.  We have the technology to cure diabetes.  And we most certainly have the motivation by which to accelerate research.  Look no further than any diabetes blog or heartfelt Facebook post by a D parent whose child just wants to eat cupcakes like the rest of the class, with no needles involved in the process.  Curing diabetes will involve faith, fundraising, advocating, and destigmatizing.  The #doc is well-suited to do this job.

It is 2015.  It’s about darn time for a cure.  I am excited about the pending technological options which will tide us over in the interim, but ultimately we need a cure.  If not for us in the here and now, then for all of the generations which will come after us.  It is our moral obligation to change this status quo.

November- diabetes awareness month- is about keeping the faith.  If my grandfather and his family had not believed that his polio would be cured- by whatever means- he may not have lived long enough to walk around the world free of leg braces, or to marry his high school sweetheart, or to still be madly in love so many years later.  He needed a cure, too.  He kept the faith, and he got the cure.

Keep the faith.  Advocate long and hard this month, and always.  #weneedacure

#BlueFridays

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My coworkers and I are hamming it up for Blue Fridays.  And no, that isn’t Sean Connery, but Manny could definitely pass for him!  Hands off, ladies!

My friends spotted Manny in blue this morning and excitedly told me to take his picture.

“What’s this all about?” he asked.

I explained how we wear blue to support diabetes awareness on Fridays, and how November is our month. Everyone within ear’s reach of the conversation thought that it was a great idea.  It is nice to see their enthusiasm for a good cause, and I am blessed to work with such supportive coworkers who I consider close friends at this point.

I am hoping to organize a “Wear Blue for Diabetes Awareness” day at work during November. If possible, I would like to email a list of a few pertinent diabetes facts out to the office so that people may understand the differences between the various types of diabetes and the need for more research. Finally, I want to personally pledge to donate $1.00 towards diabetes-related projects for each person who wears blue on the designated “blue day.”  It may not be much, but it is better than nothing.  And if people stop and really think about what it means to live in a world with diabetes, then the purpose of wearing blue and uniting to support diabetics has been accomplished in its own small way here and now.

Any creative ideas of which projects to consider? I have my own personal favorites, but I would like to learn more about any and all good diabetes research/treatment/advocacy going on, and I will take all suggestions into consideration.

Hope you all have a fantastic, healthy weekend!  Stay classy, DOC!

Wordless Wednesdays.

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Alright, if you haven’t noticed by now, I always need to add a “few” words, but this is my attempt at copying the “Wordless Wednesdays” posts that I’ve seen on some other blogs out there: 

Gearing up for Diabetes Awareness Month in November.  I have a feeling the DOC is going to make some noise next month, and rightfully so…