On Survivor’s Guilt and Showing Up Anyway

Improvised explosive devices (IEDs) forever-altered modern warfare.  IEDs brought other abbreviated terms to the forefront of our vocabulary: traumatic brain injuries (TBIs) resulting in loss of consciousness (LOC), post traumatic stress disorder (PTSD), motor vehicle accidents (MVAs).  Amputations.  Multiple casualties incurred.

Survivor’s guilt.

One inadvertently wrong step can trigger a deadly IED blast.  Imagine the weight one carries if you so happened to own that misdirected foot.

While living with type 1 diabetes (T1D) is in no way equivalent to active duty in a combat zone, sometimes T1D feels like its own type of minefield.  Bravery becomes the keyword.

It has, undoubtedly, been a trying time in my life.  If you’ve stuck around to bear witness to some of it on Twitter, thank you.  I know it hasn’t been easy, but I promise you it has been real. 

My blood sugars have suffered the consequences of life’s chaos.  I feel like I am back in the high school days in which I injected insulin and hoped for the best, which was often simply surviving the day.

I am confident that with access to proper, multifaceted healthcare treatment, I will see positive effects on my health.  Yet, so much of that is to be determined by third parties and real life responsibilities dictating the courses of treatment.  And in the meantime, there is a human being who never gets to take a day off from living this and feeling this.  She puts in 110% effort, but, the results do not always translate.

Scientifically-speaking, the odds didn’t look to be in my favor for my recent 2018 tour-de-New-Year-healthcare-appointments.

And yet, after lots of prayers:

“Your eyes look great.  How’s everything else going?”

“You know how it goes.  It’s been tough, but I’m trying to improve.”

“That’s what matters- trying to improve even when things are tough.”

 

 

“Has anything ever made you fundamentally change your mind?  I mean no disrespect by that question, and it does not have to be a medical example.  But, what moves you?  The data we can see on this paper?  Emotion?  Find that answer and use it here.”

That is the first time I can ever recall a healthcare provider (HCP) directly asking what I care about.  (Guinea pigs, for the record.)  Similarly, I’ve occasionally placed down my armor and been vulnerable in order to have these open conversations.

We went on to discuss CBT (cognitive behavioral therapy) in managing physical health conditions.  So often we see CBT as a mental health treatment option, but those skills can apply to anything and everything in life.  Diabetes is no different.  Because the HCP inquired as to what was important to me, we were able to construct a realistic, workable plan to move forward.

My A1c pinged in at 0.1 below the stratosphere level that I was dreading it may be in.  Physically, the 0.1 difference between an A1c of X.9 or Y is negligible.  But mentally, it is huge.  In this case, it becomes motivation rather than deflation.  And yet, it shouldn’t be that way.  I know that rationally such numbers are a compass guiding us home.  ‘Stratosphere level’ in my personal diabetes vocabulary relates to that overall crappy feeling, rather than a place of harsh critique.  Yet those numbers so frequently get thrown around in the healthcare blame game, and often times we can be our own biggest bullies.

After 27 years of living with type 1 diabetes, my main takeaway is that T1D is a total crapshoot.  We don’t always want to believe that.  There is the fable of “control” over the often uncontrollable.  There is an uneasiness in sitting with the harsh reality that a disease may decide to do what it wants, when it wants.  So, we construct narratives to counter that.  Maybe we should focus more on living rather than surviving situations yet to be determined, though.

We overemphasize what the human being should and shouldn’t do along the way so that if and when the scary stuff happens, our blame game trigger-fingers have a target.  That target is a person who tried his or her hardest, even on days when it feels like more would’ve, could’ve, should’ve been done.  Showing up is trying.  Keep showing up.

Now, don’t get me wrong.  I want us all to hang our hats on hope and to try our best- whether we find it in daydreams of a cure or we figure out a decent way to eat low carb or what have you.  Diabetes may very well be a manageable condition for some.  But we are doing a disservice to all people with diabetes (The Whole) if we do not acknowledge that “some” is not “all.”  There are psychosocial, socioeconomic, environmental, genetic lottery, healthcare access, and so many other factors at play in determining the ultimate course of an individual’s diabetes.  Diabetes manifests across an illogical spectrum.

I dodged bullets recently.  I got second chances.  I feel a legitimate level of survivor’s guilt, like my own foot easily could’ve tripped the diabetes IED line but I Cupid-shuffled to the left just in time.

There are people out there with lower A1cs than mine who also try just as hard as me.  I will never judge anyone for their diabetes.  You could tell me you chug 2-Liter Coke bottles on the regular, and I would still say there’s likely psychological pain hidden behind that coping mechanism.  I will support you in your healing.  Simply by showing up and having shown up over time, you are already at 110% effort status.  You do you.

Genetics may play a role in others’ numbers compared to mine, for example.  Yet those same genetic factors may also be why they hypothetically develop complications despite tight A1c’s, and the person dodging bullets does not at this point.

Hitting “publish” on this blog feels like one big jinx.  Will diabetes and its potential havoc-wreaking always be this way for me?  Only God knows that answer.  There will likely be more times of evading danger, and other times where diabetes strikes out of nowhere.  I will deal with those times as they come.

The benefits outweigh the risks in publishing this blog.  Once we start being more honest about diabetes being a JerkFace, we can stop seeing ourselves as diabetes management JerkFaces-In-Chief.  How I wish someone had told me that in high school.  Or even if my recent A1c had hypothetically been Y instead of X.9.  You tried, Current Ally or High School Ally.  It wasn’t pretty, but you showed up anyway.

The bottom line of our focus should be on the ultimate abbreviation- quality of life (QoL).  The HCP was spot on in her questions: What motivates you?  What will drive the changes that you want to see?.  If we can answer honestly, if we soul-search and find our why’s for continuing to show up and try, well, I’d say that’s a worthy battle no matter the outcomes.

 

 

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*Not Another Mount Everest Story*

Today marks my 27th diaversary.

 

My detailed reflections are still there.  But, to speak my current words, I just require a proverbial megaphone and a rooftop to shout from:

 

It remains unconscionable that there is no cure. 

#weneedacure

 

Diabetes has made other things more difficult.  And other things have made diabetes more difficult.  And around we go.

Behind all of that, I see a human being.  Her eyes look back at me in the mirror, tired.  She will never stop fighting this disease, and she drinks a lot of coffee.  But, damnit, she is tired.  

There’s still so much left to accomplish. It’s certainly doable. But, it feels like a lot a lot a lot. 

She is telling her truth here because that is the realest advocacy she can offer today.

There were many times when she did not want another “climbing Mount Everest” diaversary story.  She simply needed a beer with a friend (or an affirmative blog post), a friend who could not reasonably promise that it would all be okay.  But that friend would sit beside her and say cheers to #weneedacure anyway, because it was the bravest idea they could hang their hope on.

This is the “tell your truth” edition of the Mount Everest story.

Sometimes, that truth hurts.  Tell it anyway.

Advocacy lives in the stories and in the people with the eyes, staring back at us in the mirror.

It is more than enough.

 

#weneedacure

  

#MedMo17

*dusts off blog*

I recently enjoyed a trip to New York, where I caught up with my good friend, Mette Dyhrberg, CEO of Mymee.  We presented at MedStartr’s #MedMo17, which I would describe as the healthcare version of Shark Tank but with even more meaningful interaction among all participants in the ocean of health.

For those interested, you can view MedStartr’s #MedMo17 Empowered Patient Panel here.  Our presentation begins on Day 2 around the 4 hour, 41 minute mark.

While not giving too much away for those who want to watch the video, I will mention a few noteworthy takeaways from MedMo17 here:

  • It was an honor to present with such passionate healthcare advocates.  It was even cooler that our panel ended up being all women- such a rarity in the healthcare world.  These ladies know their stuff and have done so much for their respective communities.  The audience engagement was also A+!  Many thanks to MedStartr for having us!

MedMo17

         (Panel photo via Aline Noizet)

 

  • I was totally impressed with mycounterpane.com, a platform created by MS advocate Kate Milliken, who pitched at MedMo17 and also presented on our panel.

 

  • Other shout outs go to socialworkr.com for supporting those who do so much to support others, and to FHIR HIEdrant as an example of good marketing/branding in health technology.

 

  • Some MedMo17 attendees approached me to talk about diabetes advocacy following our panel session.  They reinvigorated my spirits and reminded me why we do what we do (so well!) here in the #doc.  Thank you for sharing your heartfelt stories and for rooting for our cause.  It means more than I can express here.

 

  • Brooklyn has always been on my bucket list to visit, and it was just as charming as I imagined.  I had fun catching up with my first college roommate (who by some miracle is still my friend considering how obnoxious I was freshman year!) prior to my drive home.  #GoFriars

 

  • Finally, thank you to Mette for your ongoing support and for hosting me in New York.  We were instant friends when we met at Stanford Medicine X in 2016, and our foundation of friendship remains strong to this day.  Through the help of Mette’s Mymee app and coaching, I have achieved a better quality of life.  (Watch our panel video to learn more!)  I am eternally grateful.

 

MedMo- NYC

 

 

 

 

 

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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Explanation of Benefits

THIS IS NOT A BILL!!!
(Thank God)
This is simply the preface to the bill
so that you can be prematurely pissed off
about who will be taking away your money

 

The EOB outlines the costs
What you owe the doctor
What your insurer owes… someone
What debt your existence owes
to a society that doesn’t really care

 

That Advil pill at the office even though
there’s Advil in a Ziploc in your purse?
Ten dollars. The cup you pee in?
Five ninety-five per ounce
Don’t spill it when you close the window.

 

Does a smile at the reception desk
bankrupt the operation? Imagine a world where
insurance cards do not dictate our worth-
where compassion is doled out, unmeasured
and it’s okay to come back for seconds.

 

Can we quantify the waiting room tears?
The traffic, the tropical island vacation
with family swapped out for appointment slots.
The doctor who is not seeing her lunch break
will see you now, instead.

 

You both are tired of fighting
a system that feels it is better to explain
“benefits” than to explain why
none of this is fair, why your pain
will not break with the fever.

 

We can’t explain why the cancer spread,
its roots strangling the beating heart.
We can’t explain the silent prayers
sent up in parking garages late at night
when the city lights blink off.

 

The explanation of benefits is simple, really:
Sit with us, outside on the sun-bleached bench
On what our brains will dub the Bad News Day
where the whole world stops and all that is left
are the parking garage prayers said outside, together.