Hello from the outside. From the outside of the DOC. It’s no secret that I’ve been an outsider lately. There are various reasons for that.
I’m not going to go into those reasons in detail, but one big reason is that any time a thought came into my mind regarding diabetes and I considered sharing it online, I’d ask myself “Why?” Why do I need to tell a story that’s already been told?
There are plenty of folks who fulfil the role of inclusion, of solidarity, of showing people with diabetes that they are not alone. I don’t feel the need to do that myself anymore; not at this point in my life. Nor do I need that reminder from others. Next month will mark 35 years from my date of diagnosis. I’ve met people on both sides of that milestone and I know folks like me are out there.
I am currently writing this while on a plane, flying back home from my second (and overall, the fourth) Diabetes Advocates Forum (affectionately known as #MedtronicDAF). Frankly, I found it peculiar that I was invited again, considering my absence from – and arguably my neglect toward – the Diabetes Online Community. As I wrote the last time, I hardly consider myself an advocate to begin with. Not even an advocate-wannabe. But I accepted the invitation (expenses paid, thoughts my own, yadda yadda), and WHILE I was there, I learned WHY I was there. Sort of. But I couldn’t put it in words.
But Amanda, who’s in charge of Medtronic’s external communications and is the mastermind behind the event (she has a formal title and last name, but neither are germane to this discussion) – along with her hardworking staff – knew the reason. And while having dinner after the forum had concluded, she graciously introduced me to Brian. Brian is one of the chief CGM development engineers (again, not too big on titles). Patrick, another talented lead engineer, was also in the discussion.
After gravitating from specifics, we spoke more generally about the need to approach any design by first identifying an unmet need. Abstractly, without bounds, and without prejudice toward a particular technology or existing method. Engineering and problem-solving is in my blood and I found this discussion fascinating. Most readers probably find this engineering process dull, however, so I won’t elaborate on it.
There is great value in specific challenges that patients/consumers/PWDs/etc (take your pick) encounter and bringing them to the surface. The DOC does a great job of that. And there is also an absolute justification in voicing those concerns and demanding “I’m your customer. Find a solution and make it happen.” I read it often, and heard it often at the forum.
But in order to achieve a personal feeling of accomplishment, that’s not enough for me. I find a need take those concerns and figure out the overall unmet need – from a perspective that likely doesn’t exist deep in the trenches of industry or government – and propose a solution. One that, hopefully, will reach the ears of those who are empowered to make change.
So, since we could only accomplish so much (read: not much) in one day of sessions in Northridge, California, I’ll have to do it myself. Or at least do enough to get the gears turning. It’s not enough to restate what we want achieved, I’ll push to provide guidance on how to do it.
I’ll rely on youse guys (remember, I’m from Jersey – “y’all” is not proper English) to amplify that message. You’re great at that, and I’m a bit shy when it comes to self-promoting anyway. But I’m going to attempt to craft those messages and solutions.
Perhaps they won’t be taken under consideration word-for-word. In fact, I’m sure they won’t. But if they get the discussions started and open up new lines of thinking, I’ll consider it a success.
This is how I can contribute to the Diabetes Community. This is my calling.
There is a noticeable evolution in Adele’s music from 21 to 25. I am – and this blog is – evolving as well. However, this blog’s title will remain as it’s always been, inspired by her song from four years ago. There’s still a fire burning in my heart, and it’s reaching a fever-pitch that’s pulling me out of the dark. Going forward, expect this blog to be different than anything you’ve ever read before.
Hello from the other side.
Generally, I keep my diabetes-themed world separate from my personal world. My friends (outside of the DOC) know I have diabetes, but they don’t want to hear about it 24/7. I understand and respect that. When it comes to my personal Facebook account, it’s rare that I bring up diabetes, except in extenuating circumstances.
This weekend was one of those extenuating circumstances, and this is what I wrote (along with the image to the right, which I shamelessly lifted from a Tweet that had been virally re-Tweeted):
This weekend, I’ve read of two very young children who passed away because doctors failed to diagnose Type 1 diabetes, and a third who was put through a battery of uncomfortable tests before someone thought to do a simple finger-prick (fortunately, that one is doing fine now). There are far too many people — medical professionals included — who aren’t taking the symptoms seriously and who send kids home with antibiotics rather than perform a 5-second test. The consequences range from severe to catastrophic.
If you believe your child may be experiencing these symptoms, have the possibility of T1D checked out definitively and don’t take no for an answer. If your doctor refuses, come see me and I’ll check for you. You can’t afford to wait.
If you’re reading this, I presume you must read other diabetes-related stuff online and you probably know of one if not both of the children I wrote about. I’m not going to post their names here. They didn’t ask to be poster-children and I see no reason to use their likenesses in that manner.
But as for the message, I thought long and hard about that message I wrote on Facebook. After I wrote it, I had second thoughts on what I included. I know it was long and would be skimmed at best. I know people despise being told what to do. I believe that if I overdo it with diabetes-talk, people will tire of me and stop following what I write (which is typically inane nonsense, peculiar observations, or parental joys).
The message, which deserves to be spread well outside of the diabetes-community, has to be short and sweet for it to be effective and for people to take notice. It has to:
- Tell the signs and symptoms.
- Express the urgency.
- Empower someone to challenge their doctors.
I believe I addressed those two points in my long-winded Facebook rant.
But here’s where I failed. I did not communicate that:
- There’s no way to avoid it. Your kid’s diet or lifestyle has absolutely nothing to do with T1D-onset. It’s important for people to not be dismissive and have an “it can’t happen to me” attitude.
- It’s not just for kids. Yes, I wrote it with kids in mind, but adult doctors are also guilty of these mistakes.
- Don’t be afraid, but be afraid. Diabetes is serious stuff when it’s neglected. But when tended to properly, it’s not life-shattering or even dream-shattering.
So how do we express these six bullet-points (not using bullets, because people hate having bullets fired at them) without losing the audience? Do we even try for all six, or just be content with three. I stopped at three, but I know there was left unsaid.
Any ideas? I won’t limit you to Twitter’s 140 characters, but it’s got to be short and sweet. Leave your response in the comments below.
By the way, there’s a reason I’m taking this so personally and so seriously. My son is now one year older than I was diagnosed with T1D, and a strange part of me thinks that its about due time that one of my friend’s kids or one of my kid’s friends is about to be affected. Of course, I don’t want that to happen, and I know that seven or eight isn’t the “ripe” age for diabetes to rear its ugly head (I don’t know that there even is such an age), but the thought still lingers. I can’t help but look at a large group of friends and wonder “what if” one of them drew the short straw? It’s creepy and it’s wrong, I know. But it’s on my mind. Knowing that at least three T1Ds graduated our town’s high school this year makes me think an elementary school diagnosis is inevitable.
I can only hope that the friends my message gets out to, most of whom have young kids like me, will take it seriously and never have to face an unnecessary tragedy. Though a cure is still far, far away, the diagnostic tests are here now; and there’s no reason they shouldn’t be used. Now.
I pray that these are the last two blue candles I ever have to light due to a mis- (or missed) diagnosis.
I don’t mean to take away from any other blogs or bloggers out there, but when I read this one, it was different – I absorbed the words of this post much more deeply than I take in most diabetes blog posts. I read with more intensity and found myself in more self-reflection than usual. (If you haven’t read it, I recommend you do).
Why was it so unlike anything else?
Because I couldn’t relate to it at all. Not one word of it. And it opened my eyes to things I had never seen and have never fully understood.
But before I get into the diabetes part of things, I was really captivated by the expressions that came directly from Kerri’s brother. Very much like his sister, Darrell has a real talent for painting a picture with his words, using phrases like “looking rather dour,” “memory … indelibly put on my mind,” and “everyday cumulative tightrope.” He finds the right words to bring the reader into his mind, looking straight through his eyes and feeling the energy of the moment. The writing talent in that family is truly extraordinary.
My brother, if you recall, is nothing like Kerri’s brother. He can’t talk at all. With his limited cognitive function due to Angelman Syndrome, Daniel can only live in the present; his ability to remember past events is minimal, and his ability to predict future events is nil. He is unable to express himself using words, resorting to grunts, groans, and gestures (sometimes aggressive ones) to express the most basic of emotion, and his behaviors are sudden and impulsive. Growing up in my family, Daniel was always the one who required the extra attention. Food was kept behind locked doors to keep him, not me, out.
Although there were only two of us, if someone were to play the famous (at the time) “one of these kids is not like the other” game, Daniel would unquestionably be the answer. And, since there were only two of us, that left (and still leaves) me without someone to talk with in a typical “sibling” type of relationship.
Bringing the topic back to diabetes, this is probably why I’ve often grown up with the understanding that my diabetes was mine, with all the rights, responsibilities, and privileges pertaining thereto. Back in 2012, I wrote a blog post about it, titled “It’s mine, and I’m not sharing.” I got quite a bit of heat from that post, likely because I didn’t acknowledge everything that my loved ones contributed to and sacrificed because of my diabetes.
Because I didn’t know.
In very recent history, there are two things which gave me insight into what may have gone on in my house as I was growing up, which I didn’t see. First, was the excerpt in Kerri’s book which I described above.
Second was a string of comments to a status-update I left on my Facebook page last month on the 34th anniversary of my diabetes diagnosis. The status itself was rather low-key (and included an image I’ve shared here before):
My memories of those early days with diabetes are filled with images and interations with a hospital bed, the school nurse, eat), the school nurse, urine tests, Life Savers, and an inconvenient 10:00am snack.
This wasn’t the first time I’ve acknowledged the date on Facebook (I don’t do it every year), but it was the first time I saw a stream of responses like this.
- My cousin, a few years older than me, wrote: “You were still so sick at my Bat Mitzvah. I remember you sitting/leaning on Grandpa.“
- A friend, a couple months older than me and who I’ve known since before I learned to talk, wrote: “Ugh I remember when you got sick [sad-face emoticon]“
- My aunt, who in age is just a half a generation older than me, wrote “One thing I remember about when you were in the hospital that time, besides everyone being very upset and crying, is that you played with the controls on your bed until they broke.“
I never EVER thought other people remembered me looking or being “sick.” I don’t remember feeling it myself (though I did miss some school), and I’m shocked that another then-seven-year-old remembers it more distinctly than I do. Any my cousin’s Bat Mitzvah was still a few years later, so the impressions (and apparently, my own efforts to stabilize) went well beyond the time immediately following diagnosis.
More importantly, I don’t ever recall seeing any hint of worry or sadness on my parents’ faces because of diabetes, and I certainly didn’t see them cry. In fact, it wasn’t until five years later (in a completely unrelated circumstance) that I learned how they looked when feeling scared and helpless. Even though my brother’s obvious (yet undiagnosed) developmental issues and my diabetes had already given the one-two punch, my parents approached both challenges – from my vantage point – with strength and unwavering confidence. I’ll bet this is why my attitude towards diabetes is similar to that of my parents: strong and determined (two traits which, by the way, peacefully co-exist with sheltered an naïve).
Any recollections of sickness, fear, or reactions of others (other than my classmates’ jealousy over my 10:00am snack) from that time are non-existent.
I posted a comment stating my surprise to the response I’d been reading, including the words “I don’t remember anybody crying“.
To which my aunt responded with something so predictably obvious, yet so profound that it deserves to be put in italicized-boldface type: “of course you wouldn’t. No one ever cries in front of the children.” Whether parents should cry in front of their children is not something I’m suited to answer right now, but I am absolutely certain that it can affect the child’s life-path decades later.
Until the thirty-fourth anniversary of my diagnosis, I never had a clue how my diabetes affected others. Or, to repurpose Darrell’s words, how memories of my own diabetes experiences were indelibly put on the minds of those around me. Nobody told me. Nobody showed me.
I never had a clue.
This, I suppose, is why I wrote that post back in December of 2012.
Though I knew everybody has some sort of obstacle to deal with — some interfering demon that gets in their way of living a perfect life — I believed my whacked-out immune system was my demon and it was up to me and me alone to own it and control it. That’s how I’ve lived my life for thirty-four years — acting in my very own sheltered existence where diabetes doesn’t come in and diabetes doesn’t get out. Oftentimes, I still default to that way of thinking — I find comfort and righteousness in keeping it to myself. It’s the whole “do unto others…” thing. I’m reluctant to “do” diabetes to anyone else, just as I prefer it hadn’t been done to me. The rational conclusion is that sheltering others from my diabetes works out best for the both of us.
The idea that my diabetes can penetrate through my shelter walls and affect people on the other side is still very awkward and confusing to me, and I’m trying hard to comprehend it. Kerri’s post helps me learn what to expect if I crack open the door and peek outside.
Why is it, that when I climb out of the pool, I wait (im)patiently for up to five minutes for my CGM to receive its next reading, when I could just as easily get it from a fingerstick in five seconds?
* * *
Why do all the big D-vendors and D-researchers save their big announcements during ADA Scientific Sessions week, when it’s more likely to get buried under other D-news? There are fifty-one other weeks of the year in which the spotlight can be all their own.
* * *
* * *
If Afrezza works as well as it sounds with its “crude” dosing, perhaps we can do away with our high-tech, high-precision gear altogether. Wouldn’t that be nice?
* * *
When companies marry the pump with the CGM, the meter, and the algorithms, it forces patients need to make a four-year commitment to the entire apparatus. This, as an example, stalls the faster-evolving and one-year-upgrade-eligibility of a CGM toward a drawn-out four-year track, inevitably compelling those who buy-in to eventually wait in the cobwebs (see: Animas Vibe CGM algorithm). We need to divorce these functions into separate physical modules that speak a common language. That way, upgrades can go through an easier regulatory process, distribution can be simplified, and manufacturers can phase out their older devices sooner. The concept of “integration” needs to disintegrate.
* * *
It’s great to see BD finally getting involved in evolving diabetes care, though I still can’t figure out the real benefit of an infusion set that squirts insulin sideways.
* * *
How is it possible that technology has evolved toward color device displays, yet our medical adhesives are stuck in monochromatic white?
* * *
When I was growing up, “sharing” meant I would selflessly allow someone else to use my favorite toys while I looked for something else to keep me occupied. Nowadays, the concept of “sharing” epitomizes selfishness — whether in CGM data or social media, sharing tends to benefit the owner of the story or data being shared, not the recipient. Where did things go wrong? It’s become totally backwards.
* * *
If the Dexcom can’t tell quite how LOW I am, how does it know whether or not I’m going lower?
* * *
Sometimes at night I plug my Android phone into my Dexcom charger and my Dexcom receiver into my phone charger. The micro-USB ports look identical. Then I wake up with a charged Dex and a dead Droid. Pisses me the eff off. WHY?!?
* * *
And finally —
I’m going to be guest-moderating the#dsma chat tonight on Twitter (9 PM EDT/6 PM PDT)! Come on over and join in the fun!
Today at work, I found myself heading out to a client’s site for a meeting. There were ten people around a large table in the conference room, about half of whom I’d met before and half of whom I had not.
Seated to my right was a gentleman who I’d spoken to many times on the phone, but had never encountered face-to-face.
During a particular lull in the meeting, he turned to me and asked “Excuse me, but what is that attached to your hip?”
“It’s an insulin pump,” I responded, nonchalantly.
“Oh, I thought it might have been a pager… but no one uses those those things anymore!”
I agreed, and we both chucked at the notion of such an archaic piece of technology.
* * *
It’s a scene that’s played out over and over in the life of a person’s diabetes life. The pump-pager gaffe has become a common and recurring theme in the diabetes community.
So why do I bring it up again?
Well, in many interactions, particularly with folks we’ve never met, we tend to be defined by our professional or situational roles. She’s the Project Manger. He’s the Owner. That one over there is the Engineer. This one is the Contractor. And the guy across the table with the crooked tie and the bad comb-over is The One Who Pays the Bills (be nice to him!). Our responsibilities dictate how we deal with one another. We act according to each other’s inferred motives, and this inherently defines whether we see the others around the table are allies or adversaries.
We don’t know – or care – about any aspect of the others beyond “what can they do for me?” or “what must I do for them?”
So, having that pump clipped to my side opens a small window to a part of me that continues to exist outside of the conference room. It tells others that I am not only the Electrical Design Manager, but that I am a living human being, and that I do not take life for granted. It tells others that I carry some pretty heavy responsibilities even after the work day ends.
And I hope it tells others that I’m doing a darn good job at it, or at least that I’m putting forth an honest effort. Or that I’m capable of rising to a challenge that they, when they learn what the pump represents, believe they could never do. (Little do they know that, given no alternative, they can; but that’s a different lesson for a different time).
What that insulin pump clipped not-so-discretely to my belt does is that it make me a person. It demotes the professional title to a secondary position and causes others to primarily see me as Scott, a pretty accomplished guy.
At least that’s how I see it.
What I do not want it to elicit is sympathy. If someone apologizes for calling attention to my medical condition I shrug it off as no big deal. I present myself with confidence, and I reject the notion of being considered “damaged goods.” I’m just as capable as anyone else, including (and especially) the person you thought I was before you learned of my diabetes. Because that’s what I believe of myself, and I don’t want others to think of me any differently.
Yet, in a paradoxical sense I do. I want them to see me as someone more. I want them to be reminded that I have challenges and vulnerabilities and concerns that live outside of my corporate email account.
Just as the other people sitting around that table do. Just as they, themselves, do.
Only they don’t have an insulin pump to visibly demonstrate that their concerns are real.
I do. And I display it proudly.
It makes me a person.