is a poem
I’m still learning
how to write.
*Knock at the door*
I answered, in my pajamas with my hair totally disheveled, no coffee consumed yet. At the door was Anna*, a kindhearted employee of the hotel who was delivering fuel in the form of diabetes-friendly scrambled eggs… and, yay!, lots of coffee.
“What brings you to Cambridge?” Anna asked, striking up a friendly conversation.
I explained that I was a diabetes advocate there for a Pharma innovation event bringing together bloggers, media, pharmaceutical and diabetes industry folks, and others to work toward a better future for all people with diabetes.
Anna’s mind was blown. The excitement on her face said it all.
She had recently been diagnosed with diabetes and was in the process of sorting out treatment with her doctors. Anna was reinvigorated by the idea that other people with diabetes, and those who care about them, got together to engage so passionately. She had felt alone this entire time. Now, a spark of possibility was visible.
That interaction, albeit brief, stayed with me during the Lilly Diabetes Innovation Summit, the event I had briefly discussed with Anna. Anna was a reminder of why we need more hope infused into diabetes management for all types of diabetes (and, human beings!). Even with all of the knowledge, resources, and tools available, diabetes is a heavy presence to carry by oneself. Wherever the future takes us with diabetes, it should lessen this load in order to improve quality of life (QoL) for everyone touched by this condition.
Before I dive deeper here, let’s take an Intermission to talk disclosures, and my own related stances, for the sake of transparency:
I was invited by Lilly to attend the Diabetes Innovation Summit (sponsored by Lilly) at the Cambridge Innovation Center on May 3-4, 2018. I accepted the invitation. Lilly covered my travel, hotel, and incurred expenses for this event.
I am under no obligation to write about this, but, as you can see here, I willingly chose to do so. Opinions expressed are my own.
Advocates do this on their own free time. It is an honor to get to advocate like this, but I want to make sure readers hear directly that this involves a lot of hard work, too.
The devices which we viewed at the Innovation Center were prototypes, and constituted proprietary information. Lilly answered what they could, and acknowledged that they could not share everything related to development at this time. We were unable to take photographs of the laboratory, nor device prototypes. Thanks for your understanding.
I will try my best to convey what I learned in this blog post, much of which is paraphrased from the various sources we met while in Cambridge. I also live-tweeted important snippets of the event when time permitted. Please see my tweets from May 3-4, 2018, for that information.
The only diabetes story I can tell best is my own. I will never proclaim to represent The Whole community of diabetes because that would be an absolute disservice to everyone else’s individual diabetes, and life, experiences. That said, I do try to put a face to what makes diabetes advocacy so important: the human beings behind everything that we do, who deserve improved quality of life with diabetes. It is for this very reason that I believe advocates should always be present at events like this. I am grateful to have the opportunity to advocate at this level, and I want to thank Lilly for hosting us. Thanks also to MSL Group for coordinating our travel and schedules so that things ran smoothly.
I grapple often with my own nerdy healthcare interest in the good provided by Pharma [life-saving and life-sustaining prescriptions being one example, and good employees who have personally been kind to me throughout my own life circumstances being another], and the legitimate, persistent, life-altering concerns of access and affordability that the diabetes online community (DOC) knows firsthand. I could have articulated these concerns more clearly in the past, and I am owning that here. This time around, I brought up access whenever I could, as did many other advocates in attendance. Our points were received well [I do not believe various points of view necessarily need to be mutually exclusive], and I hope the future becomes brighter through this honest engagement.
This blog is thorough in its length and detail in order to provide you with lots of information, as requested.
This concludes Intermission.
The Summit kicked off on Thursday morning with introductions at the Cambridge Innovation Center. In attendance were Lilly folks who worked on-site in Cambridge, as well as others visiting from the Lilly headquarters in Indianapolis. (There are currently about forty employees at the Cambridge Center as a point of reference). We also caught up with diabetes advocates and media writers- some old friends and others new fast friends for me.
As some background in layman’s terms, Lilly- together with external collaborators to be discussed later in this post- plans to create a “connected diabetes ecosystem.” Essentially and ideally, consumers can expect a “smarter” diabetes management system encompassed by a hybrid closed-loop insulin pump and/or an insulin pen with a computerized “brain” attached. Lilly stressed the urgency of a comprehensive design that allows users to simplify the amount of effort involved in daily diabetes management.
The bells and whistles supporting this ecosystem will likely include a distinct phone app software, algorithms relying on intelligent trend analyses, continuous glucose monitoring (CGM), blood glucose meter results, and, of course, the individual characteristics and experience of the user with diabetes, combined with their healthcare team’s wisdom. There was also heavy suggestion of a potential “coaching” program a la other diabetes apps like MySugr. For this description, I have paraphrased a bit from Wil Dubois of Diabetes Mine, who does a great job articulating the connected ecosystem details concisely here.
After breakfast and coffee, we took a tour of the laboratory. Lilly is the Willy Wonka of pharmaceuticals, whether in Cambridge or Indy, and I mean that respectfully. Every tool and gadget imaginable can be found in the Cambridge lab, and Lilly has the capabilities to make a fully-functioning product right there in one spot. This includes on the molecular level with insulin manipulation. Lilly can sketch a concept, generate a prototype, and produce a design all in a day’s work, with additives such as 3-D printing aiding this process. Growing up in the Boston area, I know firsthand how much brilliance and ingenuity is centered in the Cambridge hub, and Lilly has chosen to develop its systems here for good reason.
In the bioengineering lab, we spoke directly with the designers working on the Lilly products in the pipeline. We met a specialist in fluidics engineering, who was also the father of a child with type 1 diabetes. His job entails deciphering how fluids such as insulin will maneuver safely and effectively in diabetes technology, using various valves and pressures.
We moved on to the Formulation Lab and were instantly struck by that all-too-familiar perfume scent otherwise known as “Insulin.” Here, giant vats of insulin and biologics can be tweaked to ensure safety and efficacy under certain circumstances, such as temperature stability and absorption areas/rates which drive outcomes and value.
One photo that was okay’ed to take outside of the lab: A live VLNS lab rat, white coat and goggles on point! ^
Next up was the Lilly Panel Question and Answer Session, in which Lilly employees provided us with more detail about the ecosystem, and where it plans to take us. For as long as I can remember, various connections of mine affiliated with Joslin Diabetes Center in Boston have said, “You have *got* to meet Dr. Howard Wolpert!” Well, finally, here was my opportunity.
Dr. Wolpert is now working at the Lilly Cambridge Innovation Center, and he lived up to all of the good things others have said about him. I got to chat further with him at dinner, and was totally impressed with his empathy and understanding for what we go through day to day with diabetes. After all, he is married to a researcher with type 1 diabetes, so he gets it. At the Lilly panel, Dr. Wolpert acknowledged how diabetes management has not aligned well with patients’ lives and individual nuances in the past, and Lilly’s innovation is an opportunity to change that for the better.
We also heard from Lilly’s Matthew Clemente, Chief Technology Officer; Rhett Alden, Chief Digital Architect; Kevin Cammack, Senior Brand Director at Lilly Diabetes; and Marie Schiller, VP of Connected Care and Site Head in Cambridge.
Multiple daily injections (MDI) are a market access point for the connected ecosystem. Selling points of the smart insulin pen include dosing suggestions based on tracked meal, exercise, and stress (measured by cardio rates) insights. Bluetooth and phone app guidance help the user to have some of the perks formerly only available with insulin pumps, while maintaining the simplicity of using insulin shots. While the design is still in the works, the pen may be in the form of a disposable platform, or possibly a small attachment piece.
Rapid usability feedback sessions, in which Lilly designers garner input from consultants and patients, drive the user-centered design approach. Personalized preferences may be honored with on/off, opt-in/opt-out toggle features. For example, not everyone may want constant notifications or loud alarms, and users may be able to adjust these options accordingly. If their interests change the following week, they can update selections to reflect this.
We were among the first people in the world to see Lilly’s automated insulin delivery prototype. In terms of length, width, and height, the pump prototype reminded me of the small Altoids tin shown in my palm in the photo below, if only the tin were circular. Flexibility, usability, safety, and “upgradability” were all important factors in Lilly’s design. Lilly aims to make diabetes management simpler, not just for “uber-users,” but for anyone of any health literacy background.
This pump can be worn in the usual injection/infusion site areas of the body. The pump’s short tubing will connect to standard Luer Lock infusion sets already in existence, but we are pushing hard for Lilly to design their own infusion sets as well. The option to secure the pump directly to the body with medical tape, similar to how many of us wear the Dexcom transmitter, is a possibility. I also hope to see a pump clip in the future.
While there will be smart phone interoperability with this pump, the pump can also run in automode if the controller is not present. (Currently, there is no screen included on the body of the prototype pump itself).** The efficacy of certain features is still being worked out, but one example in mind is a button on the pump’s outer shell** with pre-set bolusing capabilities. So, for example, if you lose your smart phone in a taxi after a wild bachelorette party, you might still be able to press a button and give yourself a pre-determined dose of insulin as needed.
On the flip side, safety could be an issue there. For example, you might have thought you pre-set the “button dose” to 0.25 units of insulin, but in reality, it had been set to 1 unit many months ago. Suddenly, the lost phone in the taxi cab is not such a big deal… There is also the idea that people are rarely detached from their phones nowadays, which bolsters the notion of phones homing the algorithms. I give Lilly tons of credit for being cognizant of these scenarios and actively working towards user-friendly, reliable, safe, innovative features. Lilly knows insulin well, but they are also proving to take the various elements of insulin’s delivery to new heights.
The pump will be piston-based with a flexible reservoir, and can hold 3 milliliters (mL) of insulin volume. Sites will be intended for three days of use. Dexcom G6 will communicate with this pump, and a model-predictive control algorithm will guide the way. Clinical studies are currently ongoing. How one will obtain Lilly’s hybrid closed loop system when the product arrives on the market is still in the works as well. A journalist in attendance noted the benefits of healthcare providers writing a prescription in one fell swoop, which would cover all of the moving pieces for the automated system.
Similarly to the way Anna’s breakfast delivery re-fueled my hungry stomach (and spirit), Lilly’s ecosystem is sort of like ordering room service for your rebellious pancreas. The keyword we heard the most while in Cambridge was FLEXIBILITY. Lilly recognizes that each person with diabetes is a unique individual, and management styles should reflect that accordingly. By catering to users’ personal preferences, Lilly hopes to make engagement easier. Diabetes management features, a la carte, so to speak. For the advocates in attendance, this is all awesome, so long as the ultimate price tag is more reasonable than hotel room service mark-ups.
As noted previously, Lilly’s pump will connect with standard Luer Lock infusion sets already in existence on the market. Having experienced the havoc-wreaking of defective insulin pump infusion sets repeatedly in the past, infusion set reliability is huge to me in any diabetes innovation going forward. The fanciest pump in the world is not worth much if insulin is not getting absorbed into the human body properly. Among others in attendance, I also encouraged Lilly to consider using their engineering brainpower to create their own high-quality infusion set product. I feel so adamantly about this that I have offered to meet with Lilly to discuss this further, as I am only a short car ride away from the Innovation Center. And I sincerely hope we make a point to follow up on this together.
All that said, when I was sick on the couch with ketones while going through the faulty infusion set fiasco (not developed by Lilly) a few years back, I never could have imagined I would get the chance to discuss the design of future products directly with the manufacturers. On a personal level, this brought me full circle as to what I have endured with diabetes technology, and how I can play my own small part in making things better because of these stories. Health tech is positively life-changing when it works as intended. But we have to do our best to ensure safety and quality so that human beings are not hurt in the process when bumps in the road appear. Lilly was absolutely cognizant of these concepts and open to hearing us out, and I believe this reinforces another reason why advocates are always needed at these events.
A Lilly panel Q&A would not have been complete without diabetes advocates raising the issues of access, and raise the issues we did. I was proud of our cohort for our expression of a life and death topic in our community. Insulin is the fuel running these technological developments, and, as an essential for people with diabetes, insulin is the starting point from which other access flows.
I reminded the panel that Lilly is in a unique position as a diabetes pharmaceutical giant now dipping into other aspects of diabetes management and innovation. They have the ability to set the tone regarding access to this innovation, and, due to the sheer number of people living with diabetes worldwide, their business will be viable no matter what. Making these services available to diverse groups of all backgrounds – particularly those vulnerable in socioeconomic and psychosocial facets – would be an admirable route with positive ripple effects throughout healthcare.
To Lilly’s credit, they listened and acknowledged our points. Marie Schiller sticks out to me for repeatedly noting that any innovation Lilly develops is moot if it cannot get to the people it purports to serve (paraphrased here). Through various testing and outreach opportunities, Lilly intends to make access more equitable.
In summary, the panel relayed their great trust in Lilly’s ability to make an advantageous product for the diabetes community. Heck, that’s why they are joining forces with Lilly! Dexcom’s Dana Cambra discussed how the Dexcom G6 has changed everything for the better, boasting a new algorithm, membrane, and applicator. Lilly’s Marie Schiller discussed how insulin is a “really hard molecule” in terms of manipulation, and how DEKA’s expertise can provide a mechanical solution. Rimidi offers an intuitive EHR (electronic health record) platform which could suggest certain treatment options (such as Lilly’s future ecosystem) to patients identified as possible candidates. McGill’s Dr. Ahmad Haidar is the brain behind the algorithms used in Lilly’s designs. Dr. Haidar emphasized lessening the diabetes managerial burdens we currently face through this technology.
“Adherence” data on insulin remains somewhat scarce. [I still do not love ‘compliance’ or ‘adherence’ terminology, as, arguably, the issues lie within our broken healthcare system much more than they do with patients’ willingness to feel better]. We can download pumps and CGMs, but that still only gives us a tiny glimpse into reality. Through clinical studies, Lilly will be able to garner more useful, in-depth information, to include smart insulin pen dosing details. Lilly’s partnership with Tidepool could be one example of how Lilly learns more about people with diabetes through data analysis.
This panel was as good a place as any to chime in about access. I wondered aloud how much our diabetes data is saturated by the health-literate, privileged folks who just so happen to be the type to engage with diabetes tech. I also asked how anyone- whether an informed blogger, or an Average Joe Diabetes, might eventually take the first step to gain access to this multifaceted diabetes management system. The short answer is that such points of entry are still being ironed out as the system develops over time.
In my opinion- earned by hours spent fighting with insurance, just like every other person with diabetes- solutions to these kinks need to be highly prioritized in order to make the Lilly ecosystem quickly accessible, and successful, for all. The advocates in attendance suggested that Lilly work closely with diabetes clinics and healthcare providers in various locations, treating diverse demographics, in order to support awareness and feasibility of these future options.
We also briefly discussed the healthcare industry trend towards value-based care. With healthcare providers and patients, alike, being impacted by outcomes data, innovation such as Lilly’s will have to prove its worth, too. I voiced concern- which goes far beyond Lilly’s innovation and more so towards this value-based trend in general- that there will always be patients, particularly in complex autoimmune disease situations, whose outcomes will not align with the extraordinary effort they put into chronic disease management. I asked the rhetorical question of how we will support them so that they do not fall through the cracks. Lilly takes angles like these into consideration when targeting therapies to deliver on individuals’ needs, and the short answer here is that they anticipate that their innovation and collaboration will prove helpful.
We later participated in a lively ideation session led by Matchstick LLC, complete with colorful graphics drawn on the spot by ImageThink. Here, our hosts picked our brains regarding design. For our example, we created our ideal smart insulin pen, complete with the likes of insulin dosing memory and suggested/predictive dosing capabilities; sound, which could be formatted to suit the user, and also to ensure safety (clicks based on number of units could help prevent or alert to inadvertent overdose, for example); and phone app support. The pen would likely be in a disposable format, rather than having a “smart” attachment, and it would hold 300 milliliters (mL) of insulin- mitigating insurance coverage arguments being one reason we leaned this way.
Smart insulin pen design poster by ImageThink. ^ Insert all obvious Friday afternoon jokes from the crowd, too.
I departed from the Lilly Summit feeling more optimistic than I have felt about diabetes technology in a long time. After going through my past insulin pump trials and tribulations, I need something new and exciting to hang my hope hat on, and I feel that the Lilly innovation is that hope. We require more options in diabetes-land, and Lilly is a Goliath that can compete in a revolutionary manner.** I want everyone with diabetes to have access to optimal tools for diabetes management, and my hope also rests on the idea that we can make quality of life better for all of us through such accessible means.
Thanks again to Lilly for hosting us!
For more information on the Lilly Diabetes Innovation Summit, check out these previously-published pieces linked from:
* Name changed for privacy purposes.
** Updated later on May 21, 2018, for clarity purposes.
In the famous words of Fergie, “I be up in the gym just working on my fitness.” Or, at least I should be for my overall health, as well as my diabetes management.
Admittedly, my exercise regimen has waned in recent times. During grad school, I was on a mission to do #AllOfTheThings and to do them very well, so I was somewhat of a “gym rat.” Nowadays, I will meander around the city on my lunch breaks or take a stroll to de-stress after work. Otherwise, does lifting up a Bud Light and putting it down count as a workout? (Inquiring for a friend…)
Needless to say, when I was asked to review the fabulous Christel Oerum’s eBook, Fit With Diabetes, I realized it was a good opportunity for an exercise and diabetes tune-up, and, perhaps, to help some of my readers/followers do the same. (See below for my disclosures).*
Christel is “one of us,” a fellow person with diabetes (type 1), who clearly has a passion for fitness and healthy living. She does not come off as “preachy” in the eBook, which is a welcome change to what is customary in literature regarding diabetes and exercise. Rather, Christel is down to earth and likable.
She acknowledges that there is certainly tough work cut out for us, yet illustrates that our goals can be more attainable through some helpful tips. As Christel explains in the introduction to the eBook, we each have individualized diabetes and exercise needs, but with a proper framework in place, we can make the process smoother.
From cardio, to resistance training, to nutrition, to workout routines, Fit With Diabetes has us covered. The various chapters of the eBook are user-friendly in terms of looking up specific areas of focus quickly and easily. Christel provides real world examples for various scenarios, such as planning effectively for different types of exercise whether using an insulin pump or injections. From my viewpoint as someone looking to get re-motivated on the exercise front, it was nice to see these firsthand examples.
I believe this eBook is a useful tool for anyone living with diabetes, their support networks, and healthcare professionals, alike. Christel provides a straightforward guide by which you can generate your own effective course of action.
Please see here if interested in reading the eBook.
Many thanks to Christel for contributing this insightful work to our community!
*My disclosures are the following:
I was asked to review Fit With Diabetes, and I received a copy of the eBook in order to do so. Opinions expressed are my own.
Healthcare talks (not enough) about trauma-informed medical care, which is summarized best by what its name so states. But what about trauma-informed advocacy?
This could easily become a dissertation or a thesis topic, and, fair warning, I may pick your brains in the future if/when I pursue another grad degree. In the meantime, if you want to read a dissertation, or even a SparkNotes version, on trauma research, you have to put in the hours. For those interested in learning more, some recommended starting points would be to look at how trauma is clinically-defined, to read the DSM V PTSD diagnostic criteria as examples, and so forth.
Just as physical health can impact mental health and vice versa, so, too, can trauma. For example, we know trauma changes us on a cellular level, is linked to autoimmune disease, and can negatively influence mental health. This can, in turn, greatly diminish an individual’s quality of life, while also hurting society (lost work production, etc.). For years I have been preaching that trauma is a public health crisis that costs us so much- financially, emotionally, physically- and this article wowed me in how well it articulates those points. While not all trauma is preventable, much of it could be prevented/lessened if human beings simply treated one another better, and if healthcare provided more opportunities to cope well.
But, for today, this blog post is fodder to perhaps get us thinking about our advocacy.
Not every person, nor every advocate, has experienced trauma. Yet, when I have looked around the room at healthcare events in the past, I have seen the battle scars of those who may have publicly or privately disclosed their painful histories with us. Admirably, advocates have chosen to help others, to be intellectually curious, despite their own hardships.
Havoc-wreaking health conditions. Bloody medical procedures. Abuse and/or neglect. Poverty. War. And, sadly, the list could go on much longer.
We may have been brought together, on Twitter or at a conference, for example, because of our mutual interests in healthcare-related topics. And yet, I often find there is another common denominator in the room: trauma.
Diabetes fireside chats often ask: Which came first, the diabetes or the depression? (Or perhaps, a little of both?). Knowing what we do about the health effects of trauma, this theme remains prevalent. Trauma often begets trauma. Maybe workplace harassment trauma triggers an autoimmune attack, and then the difficult reality of living with a chronic physical health condition compounds, molding trauma upon more trauma into a teetering Lego castle of human life.
I recently tweeted that in educated adulthood, I often find myself wondering about the manageability of my own diabetes if the inflammatory effects of trauma history were not involved (i.e., would type 1 diabetes, an autoimmune condition, be more tamable without trauma?). Probably. In layman’s terms, cortisol is released when stressed, leading to insulin resistance, and around we go.
The “five types of diabetes” headlines are all abuzz recently. Yet, I believe that there are much more likely to be 5 gazillion types of diabetes, all manifesting across a spectrum that caters to our individual genetic makeup, environment, and so on. This includes our traumas, or lack thereof. Just as other major autoimmune diseases go through times of “flares,” so does type 1 diabetes, in my opinion (and despite our reluctance to use the term). Trauma can potentially be the cigarette lit by the gasoline tank, and it is not far-fetched that this could set diabetes aflame- a “flare” going off in the night.
While I will surely be critiqued for my subjectivity here, I can tell you that behind closed doors many big wig diabetes doctors have entertained, and even suggested, some of this material. Recognizing that trauma may make my diabetes more wily, at times, does not mean that I am giving up or copping out. It has actually provided my healthcare providers and I with some much-needed peace (which, I might add, can positively affect emotional health and blood sugars, and don’t we love how complex this all is?!!!). We can forgive ourselves for the moments where we do everything “right” and the outcomes remain frustrating, and we can draw a more practical game plan moving forward. Although the scenario is not ideal, there are options instead of dead-ends.
The truth is, no one knows exactly the impact of every minutiae of each diabetes story, or healthcare story, or an individual’s overall life story, and we probably never will. But is that any excuse for our healthcare ecosystem to lack supportive resources for folks withstanding the tough stuff? How might we provide quality, holistic care earlier, and better?
Some other Stanford Medicine X (#MedX) Scholars and I tweeted aloud on this idea: What would our healthcare stories, and current health experiences, be had trauma support been different? And, if our healthcare stories were different, how would the larger fabric of our stories as humans be changed?
We unanimously agreed that, at the very least, life would have been easier physically and emotionally. Having that validation that it is okay to hurt, and to seek proper support for what you know is real, can be the difference between being stuck in the quicksand of an overwhelming health condition, or keeping one’s head afloat. I can only speak for myself, but groupthinking about this was incredibly powerful and a lot less scary than Ally-alone-thinking inside my own skull.
If there is a MedX reunion in the future (please!!!), I believe it would speak volumes to collectively gather as advocates initiating this conversation from such a platform. This does not mean that everyone would use a megaphone to discuss things they may not be comfortable sharing. Far from it. Rather, I imagine us simply standing together in unison, acknowledging the common denominator of trauma-truth that is so often overlooked in healthcare.
So, today, I wonder aloud again.
What would my diabetes be?
What would my mental health be?
Who would I be?
Would I even be an advocate?
Will there be a day when the common denominator in the room is our access to equitable opportunities and resources to achieve our potential, to live full lives despite whatever we have endured, and to feel supported?
What would our society look like, then?
Are we really okay with the current status quo?
How might we talk more about this?
Are we listening?
*This post was updated after the original publication for clarity purposes.
“This parking lot is open until full.
Brought to you by the Church
across the way. Give what you can.
Pay it forward. Come again.”
Despite the red paint peeling back,
the sign still read All Are Welcome.
I sobbed in my car
while the waitress
from the pretentious lunch
twenty minutes prior
smoked her cigarette
and pretended not to notice
the rivers of mascara
flowing down my face.
The waitress “didn’t notice”
not because she was cruel,
but because of my stubborn pride
and all. The cigarette ash
fell to the green earth.
I drove away, wanting to hit the gas
but circled back to where I started
Stuffed ten dollars into the donation box
And for the first time that long-ago day,
it was enough. It was simply enough.
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.
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.
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.
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.