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.
Part of me wishes I had a Dexcom and a Nightscout setup. This way, I could deny people access and redirect them to a YouTube video of Mick Jagger demanding “Hey you! Get off of my Cloud!”
-from Ten Things, posted on Sept. 16, 2014
In case you hadn’t noticed, I’ve been keeping a running a tally of my “Best of RITD” posts in the header on this blog, so I could just point my response to today’s prompt to that page and be done with it. (I’ve been lazy about maintaining that page anyway). But one of the common themes in this blog, of which I take some pride, is my incorporation of musical lyrics into my stories. So instead of sharing quotes of myself, I’m going to give credit to those who I’ve quoted (or paraphrased).
The theme begins with the very title of this blog itself.
Here are my favorite posts where I’ve intertwined lyrics with my ramblings:
- Beck’s Loser and Where It’s At in DBlogWeek ’15 – Day 4 – Bottles and cans – May 14, 2015
- The Who’s Baba O’Riley in Wordless Wednesday: Bloody O’Riley – October 23, 2013
- Meat Loaf’s Paradise by the Dashboard Light in Paradise (Cold and Lonely) – March 19, 2013
- Blues Traveler’s The Hook in “The Hook” Brings You Back – October 11, 2012
And my absolute all-time favorite blog post, a vlog posted one year ago on Day 6 of Diabetes Blog Week 2014 , in which I didn’t write (or speak) at all.
- Sharp Dressed Man by ZZ Top – #DBlogWeek ’14 – Day 6 – Sharply dressed (video) – May 17, 2014
I have also managed to incorporate musical references from a wide range of musicians, including Vanilla Ice, Dexy’s Midnight Runners, REM, The Beatles (twice), Wild Cherry, The Proclaimers, The Police, Sheryl Crow, Kris Kross, Elmo & Patsy, Credence Clearwater Revival, Peaches and Herb, Led Zeppelin, and Kenny Rogers in the titles of posts, even if not in the post itself.
And there you have it. Musicians who have inspired some of the content in my blog.
I woke up this morning to the sound of a chirping smoke detector. It took about 20 minutes to figure out just WHICH smoke detector was causing such a racket (it wasn’t the first one I took down). Needless to say, between that and coaching the kid’s soccer practice this evening, there’s not much time to write. Thankfully, today’s DBlogWeek prompt – ALL ABOUT FOOD – allows me to deal with today’s post entirely in photos, which is much easier.
My BG really seemed to cooperate today. This is far from typical (maybe karma is rewarding me for coming clean a couple of days ago?)
(and a little extra at 5:51 PM, because of hypoglycemic concerns at soccer practice)
Day in Review
(I guess those two 6:50 glucose tabs PLUS the 1:30 zero-basal-rate backfired)