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.
There’s a destination a little up the road
From the habitations and the towns we know
A place we saw the lights turn low
The jig-saw jazz and the get-fresh flow
-Beck, “Where It’s at”
Well, this was unexpected! (Not that I kept up the pace for 6 of the 7 days of DBlogWeek, though that was unexpected too.)
I am completely overwhelmed with the response to my Day 4 post on Changes, titled “Bottles and cans,” in which I pondered my destination and the road that would lead me there.
If the post was tl;dr for you,
I am deeply hurt and offended because I spent a lot of time writing it, the main gist of it was this: I’m not quite getting the same personal satisfaction I once got from talking about diabetes, and that I may feel more fulfilled with a different approach: by building a better mousetrap rather than discussing the challenges of catching mice (don’t get the metaphor? go read the post. It’s tough to summarize).
Essentially, I think I can more effectively leave my mark on the tangible than the intangible — focusing on the parts of diabetes we can feel with our hands – the “bottles and cans” if you will — rather than the parts we feel with our minds. It’s just where my talent lies, and it’s the destination to which my mind tends to wander quite frequently.
But, unexpectedly, the responses to that post led me to wonder if I came across as delivering a farewell message. I assure you, I was not. But at the same time, I wasn’t acknowledging or committing that “I recognize I’ve not written much lately, and I’ll try to kick it back into high-gear again” either.
The post was about my hopes and aspirations as it concerns diabetes, and what I would like to do with my life. Equally, it was about how I have no idea how to get there, and I questioned whether the pursuit is even worth pursuing.
* * *
Then, the day after that post went live, Asante happened. Better put, Asante un-happened.
Asante put an ingenious concept out there, one that essentially solved the long-sought after desire for simplicity that no other manufacturer dare acknowledge, much less fix. Even more admirable, its designers built the Snap pump from a blank slate, completely free of any preconceptions over how a pump should look or work.
The impressive part: it was REAL. The concept became an actual product, and real people with diabetes were actually using it. The Snap is, in a large part, responsible for my own inspiration to build a better
mousetrap insulin pump. It could be done. IT HAD BEEN DONE.
And then, just like that – POOF – it was gone.
And my personal dreams, already shadowed by a dark cloud of doubt, got a shocking dose of reality. Well, they didn’t POOF entirely, but the doubt grew even larger. The sliver of optimism I held just a day before was overcome by the enormous risk and the unfavorable odds that were stacked heavily against the new guy. And I wondered.
* * *
Then on Saturday, I finally got around to listening to the rest of the Chris Snider’s Just Talking podcast from April 7, featuring DiabetesMine‘s Mike Hoskins. (With my schedule, it takes me about a month to get through a single podcast and I don’t get to listen to them all, but this was on my “must-hear” list and I found the time). I was most curious to hear his views on the state of journalism and news reporting amid today’s media, and he did not disappoint.
But then he got to the point where he spoke about the DiabetesMine Innovation Summit, and my ears perked up — even though I knew I’d already missed the deadline. I had contemplating making a submission and competing for a spot in the Summit in the past — for a couple of years actually — but I knew that even if my idea earned me billions of dollars to advance my idea, I still wouldn’t have a clue what to do with it, yet I’d have an enormous responsibility to shoulder. In fact, I’d recently gotten in touch with one of the previous Summit winners — a group with much more knowledge and experience than myself — whose innovations seem to be stalled pending more funding (this contact was made after a tweet I made during one of my inventive mental meanderings). The current state of this venture also gave me reason to think that the Summit wasn’t compatible with me and my dream.
But, in the podcast, Mike mentioned another element of the Summit, one which I didn’t know about (probably due to my lack of paying attention). He said that there would be an opportunity to liaise with the “movers and shakers” in the industry — to get ideas noticed by people who really do have the power, connections, and resources to make a difference. This put it in an entirely new perspective for me, one that carried less risk and was more attractive to me. It wouldn’t lead me to riches as as an entrepreneurial effort might, but that’s not my goal. My goal is to put my mark on a piece of diabetes equipment that is designed from real first-hand experience and that truly makes life easier by fulfilling every (achievable with today’s tech) item on a D-tech user’s wish-list.
But, alas, the deadline had passed. I suppose there’s always next year.
* * *
Now, as I write this post a week later, there’s another Just Talking podcast fresh in my mind — this one from April 14 with Christel Aprigliano. She is the one who inspired me to overcome my fears and DO SOMETHING in the first place, as I mentioned in that DBlogWeek Bottles and Cans post. I won’t repeat what I wrote in that post, but listening to the podcast gave me even more respect and admiration for her than I had before (apparently it’s possible!) – not just as a fantastic diabetes advocate, but for her talents to organize, execute, motivate, and engage. And to feel and sympathize. That is a precious combination; people like her don’t come along very often.
The bulk of the podcast was about the unConference, and it was truly enlightening to learn how the Little Engine That Could, did. It was also enlightening to learn of her one-, five-, and ten-year goals of the Diabetes Collective — which reminded me that it’s important to set milestone goals en route to the ultimate goal. That makes each task a bit more achievable and provides an opportunity to learn from mistakes. Maybe I need to write my future that way — rather than look to take one impossible ginormous step to the finish line, to reach it in a series of large, tough but achievable, steps.
As I listened, I also thought what I might be able to contribute or take out of the unConference simply as an attendee (I had not attended the last one, but plan to go to the East Coast version next year). Generally, I’m not a verbally emotional guy, and I had questioned whether I would fit in at such a session. But Christel kept describing the unConference using terms such as safe, small, and intimate. And then, suddenly, the value of that type of setting clicked.
It hit me — the one thought that I keep locked deep inside, that continues to gnaw at me year after year but that I’ve never been comfortable vocalizing (and barely realized in myself either, despite it being plainly obvious). I won’t expand on that thought here, on this blog.
But in the safe confines of the unConference, I think I can finally get it off my chest. I can discuss an aspect of diabetes that lives not in blood sugars or infusion sets or lab results, but entirely in my own head. Like a parasite, it lives, irrationally, in my own head. And now I know where and how to let it all out. I wouldn’t seek aid or validation or anything of the sort, I just want to let it out. That would be enough for me. (I think I’ve just broken my DBlogWeek Day 2 resolution!)
* * *
Which brings me full-circle back to the question I pondered from the start. Maybe I should leave the design of the bottles and cans to the experts, and instead focus on the tastes of the beverages therein.
Or I can do both. Because I’ve got two turntables AND a microphone.
As is the common theme here, I have no freaking idea what I’m doing. But of this I’m sure — I’m going in circles.
There’s an article that’s been made its rounds through the diabetes community this past weekend, titled “22 Things To Remember If Your Loved One Suffers From Type 1 Diabetes”. The author’s bio promotes a “7-day plan” and website to “stop feeling crappy” in just 10 minutes a day. I don’t trust the author – nor do I trust the site that hosts this (along with a plethora of similarly-titled clickbait) and I therefore won’t link to it directly. But you can find it via Google at that last link if you so desire.
Considering how many times the article has been shared, I imagine that lots of people must agree with the twenty-two things listed. That’s understandable; everyone has and is entitled to their own opinions and I respect that. But I got angrier and angrier as I read this list of assumptions and sympathy-craves, and quickly determined this list is simply not for me.
So I decided to create my own list:
1. Don’t treat me any different than you would treat anyone else.
2. Don’t sympathize.
3. Don’t be protective unless I request protection.
4. Don’t try to be a cheerleader unless I visibly need cheering.
5. Don’t assume… anything. Don’t make assumptions about what I’ve done right or wrong, what I should or shouldn’t do, or what others may or may not have said to me.
6. If you’re are genuinely confused, ask me. It’s the only way for you to learn, and I’m happy to teach. Even if you fear the question may be taken the wrong way, I can discern genuine concern and curiosity from judgment. Ask.
7. Diabetes does not make me fragile — physically, mentally, or emotionally. There’s no need to tiptoe around me.
8. I do not see myself as a victim. Please don’t treat or describe me as one.
9. I have a medical condition and I tend to it. But I am not suffering from it. I lead a happy life.
10. I am not hypersensitive. I can dish out sarcasm as well as I can take it. Think you’ve got a real zinger? Bring it on!
11. I am not ashamed. But I do value privacy and modesty every once in awhile – who doesn’t?
12. Don’t be my shield or my bodyguard. I can stand up to adversity on my own. I am not weak.
13. Yes, diabetes is with me 24/7/365. But so are my toenails. I do not tend to my toenails with non-stop undivided attention, nor do I do this with my diabetes. There’s much more to me than that.
14. I am me. I am not, collectively, “they”. Drawing conclusions about my behavior because of my dysfunctional pancreas is as senseless as drawing conclusions about a woman’s intellect because of her blonde hair. I am an individual with my own merits, my own personality, my own fears, and my own faults.
15. Though I accept my Type 1 diabetes, I still I wish it weren’t there. Don’t be afraid or ashamed to admit that you desire the same.
16. I genuinely appreciate your willingness to support me in diabetes-related walks, fundraisers, and campaigns. You have no obligation to do this, and I never want to make you feel like you have to endorse me. There are many causes worthy of support, and mine is no more important than the others.
17. If you don’t know how to respond or react, follow my cue. I won’t lead you down the wrong path.
18. If my cues suggest I need help, please offer help. I know I’m not perfect, and I’m not infallible.
19. I know it could be worse, and I know there are people who have it worse. I will not exercise my legally-entitled “diabetic privilege” to obtain services or opportunities that are intended for others who need them more than me.
20. I am motivated by life, not by hope. Treatments or options that may become available sometime in the future mean nothing to me right now.
21. I don’t worry about things I can’t control. Doing so will play with one’s emotions and will offer no benefit whatsoever.
22. I am tremendously thankful to have you as a part of my life. Thank you for living The Golden Rule and treating me in the same manner in which you would like me to treat you.