Category Archives: Diabetes
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.
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)
I started writing this post a week before the DBlogWeek topics were posted, and never finished. Since today’s topic is Changes, this seems like as good a time as any to finish it. The grammar-freak in me, however, weeps over allowing the lede to this post to end in a preposition, a choice that makes me feel like soy un perdidor.
Where it’s at
I’ve been contemplating my role in the Diabetes Social-media Space lately. Many topics of conversation just don’t seem to engage me like they used to. The stories seem to be ones those that I’ve hear before; the campaigns tend to focus more on breadth than depth; and the fluffy pieces seem to be light on substance.
There definitely is a need for familiar stories – it helps others to relate and validate their own experiences.
There definitely is a place for campaigns – it helps to rein people in, get folks involved, and if the audience is right – to make a change.
There definitely is a role for fluff – it’s comforting and uplifting to read. The feel-good stories can turn a frown upside down.
But I’m just not feeling it.
Maybe my time in Diabetes Social Media has run its course. After all, most of the people who led the diabetes-space when I first got involved have either toned-down their activity or abandoned it altogether, making space for a new generation of voices to earn their rise to DOC-prominence.
So why shouldn’t I expect the same of myself? Doesn’t the natural order of things lead me to seek a change of role, of scenery, or of purpose? Is it just human nature to become bored or dissatisfied with our place in life and to seek change?
It’s not that I don’t care anymore. I do.
It’s just that I’m looking to move on. I’m looking to move on from talking about the way things are or the way things ought to be…
…to doing something about it.
I’ve got two turntables and a microphone
You may recall that I was invited to an Advocates’ Forum some time ago that was hosted by Medtronic (and, in absentia, Bayer). It’s the only diabetes event to which I’ve ever been invited as an all-expenses-paid guest. Being categorized as an “advocate” troubled me, as I’ve written before.
Recently, there was another forum, called
Heal the Voices Health e-Voices, which was held practically in my front yard. It was centered around using electronic media to connect and advocate for people of many different chronic conditions, not just diabetes. I wasn’t invited. Though it was disappointing to miss out on the social aspect of the forum, the purpose really wasn’t one that suited me.
That’s not to say that forums aren’t effective. When I think back to that Medtronic event, there is one moment that remains more vivid and powerful than any other. It wasn’t on the agenda, wasn’t rehearsed, and wasn’t even staged by our hosts.
In the midst of an interaction of which I can’t quite remember, the snarky self-proclaimed “Perfect Diabetic”, better known as Christel – author of The Perfect D Blog – suddenly found herself imbued with a profound sense of energy that embraced everyone in the room. She walked around to each person in an emotional and passionate display that I can’t begin to accurately retell, expressing a particular unique, desirable, and much-needed trait about themselves. In fact, her exact words to each individual began “I need you for your…”, followed by a word such as Heart, Perspective, Creativity, Compassion. I’ll bet everyone in that room remembers their own unique identifying word. I sure do. (In retrospect, I wonder if the idea for the unConference was beginning to percolate at that moment.)
I was needed for my brain, and I’ve been thinking a lot about that lately. Philosophically, that is. I’ve pondered how I can contribute to the world in a real, meaningful manner that not only benefits others, but could fill my soul and own feeling of self-worth.
Oftentimes, others can see in us what we have difficulty seeing in ourselves. Oftentimes, people tell me that “I Can” when I think “I Can’t”. This is one such instance.
All this time, I’ve been using my microphone that is this blog to pump out diabetes-themed lyrics, letting somebody else develop and control the machinery that makes my D-world spin. (A case of “He’s the DJ, I’m the rapper?)
Well, I think my talents may be better put towards those two turntables and less on the microphone. That behind-the-scenes role may not be as glamorous as being a front-man, but it’s no less important.
I don’t do too well with psychology, but I’ve been thinking a lot about the tangible ways to make our D-lives better. I’m thinking Healthcare, Devices, Regulation, Charity.
I’ve been thinking about how to develop an insulin pump that breaks the current model of being an “all-inclusive system” top-of-the-line model. I’ve been thinking of a new paradigm (lowercase “p”, not the trademarked brand) that is designed around regulatory approvals, flexibility, and upgradeability – and of course the entire interface (visual, audible, tactile, emotional) with the PWD who uses it.
Imagine changing your CGM or your blood glucose meter while retaining the ability for either to talk to your existing pump. Imagine converting your pump from tubed- to tubeless (pod-like) operation – and back again – depending on your social calendar or other life events. All of this is built around the same pump, which achieves regulatory approval — independent of the add-ons that may not have even been developed yet. These are the solutions that are taking form in my brain.
Kill the headlights, and put it in neutral
But it’s risky – venturing into the unknown.
And I’m wondering if pursuit of the dream is a waste of time. Traditional insulin pumps are rapidly becoming “old technology” as closed-loop systems – or maybe even something like smart-insulin or Afrezza – become the wave of the future. With six established companies in the US insulin-pump market (Medtronic, Animas, Insulet, Asante, Tandem, Roche) is there really room for more, or have we reached a saturation point where only the strongest will survive?
This is the change that I’m thinking about. Not just about the dream, but about how to make it happen. I’ve got a technology-concept in mind, but I can’t go at it myself. I don’t have the entrepreneurial skills to do it myself, nor do I have an adequate network of contacts to do it with someone else.
But I’m trying to work on that. (Slowly.) Maybe this blog will help (Somehow).
There has to be a way to change the dream into reality. It’s been done before. Even by the very person who complimented me on my cranium, then went on to found her own 501(c)(3) charitable organization.
Though I’m completely chickenshit when it comes to trying new things, everyone to whom I’ve mentioned this dream says I should go for it. Though I need to keep my day-job to provide for myself and my family, I can’t neglect the calling that continues to get louder and louder. Somehow I need to learn how to make that change.
There’s a fire, starting in my heart.
Reaching a fever pitch, and it’s bringing me out the dark.
This calls for a change in my ways of Rolling in the D.
This, I think, is the amount of BG meters I’ve acquired over the years that are stashed away on the top shelf of the linen closet. I was planning to make it the topic of today’s DBlogWeek post. But a better idea came to me at 2:15 on Tuesday morning while engaged in a bit of a dispute in a diabetes-related Facebook group over something that really isn’t relevant here. I was also awake at 2:15 am surfing Facebook because an hour earlier I had mistakenly rage-bolused one-third of my normal Total Daily Dose of Novolog to bring down a stubborn BG of only 260 mg/dl, and therefore had to stay awake to chow down on a dozen glucose tablets and patiently and fearfully wait for my CGM to roll back to an upward-trend. For some reason, these are the times when I come up with my best blog posts.
It must have been karma, that self-administered overdose of insulin. That worry of “what have I done?” and “what’s going to happen to me?”, simultaneous to the implication I made in that online discussion that someone else isn’t doing “it” right. Do unto others as I did, and something bad will happen unto me.
I emerged from the insulin-overcorrection incident with little physical evidence other than the chalky, orangeyish residue in my mouth. The opinion-overcorrection left a scar — a scar in a place that has seen many other scars develop lately.
In response to today’s DBlogWeek prompt (click here), the thing that needs a thorough cleaning the most is not my museum of blood glucose meters, nor is it my collection of unused pen-needles from eight years ago (“just in case”), nor is it the bottom of my backpack which is coated with the residue of an exploded Level-life gel.
It’s my conscience. I have a dirty conscience, and it’s been weighing heavily on me lately.
Over the past year or so, I’ve not been as warm within the diabetes community as I’d hoped to be. Some of my posts have been increasingly critical. Some of my tweets have been outwardly confrontational. Some of my comments have been borderline condescending.
It hasn’t gone unnoticed by me. I’ve been making a concerted effort to change and to be more welcoming and more accepting. But so far it hasn’t worked, and the regret reprises itself moments after I click “Publish” or press “Send”. The unpublished drafts on my own blog, you’ll see that it’s filled with these types of examples, but my published comments on some other blogs are out there for eternity.
As I make my short-lived cameos lately within the DOC, it’s as if a dark cloud hovers over me and drives me to retreat back to seclusion and isolation. I’ve really grown to dislike who I’ve become sometimes, and I’m troubled by the perception I expect others to have of me.
If this has gone unnoticed by you, wonderful. But I know some of you have seen my improper statements, followed by a feeble attempt to un-say whatever it is that I had just said. At one point, a d-blogger for whom I have tremendous respect and admiration noticed my sudden streak of negativity and called me out on it (thankfully, in private via email). I still haven’t forgotten it, and if that blogger is reading this, Thank You. I needed it (and perhaps a few more doses of it as well).
But it’s not only the things I’ve said and regretted that weigh me down, it’s the things I’ve thought and not said. The opinions I keep in the privacy of my own brain. After all, I am my own worst critic.
Now, I am committed to finding a way to making my conscience clean again.
I recognize it won’t come from changing my behavior; it must come from changing my thoughts.
How do I do that? One possibility is to step away from these situations (as I’ve been toying with doing) and take an extended and forced break from the DOC. Another possibility is to immerse myself so deeply in the community that I grow to love everyone in such a real and non-superficial way that a mean thought never crosses my mind again. That’s probably not realistic. I’m not sure there is a right answer – but it’s got to be somewhere in the middle. I’ll try to find it.
In the meantime, I still seek a clean conscience.
So — if I’ve said anything to you that was upsetting, offensive, rude, or demeaning, or if I just made you uncomfortable, I’m sorry. I won’t link to those spots on the web (why open old wounds?) but trust me when I say that I haven’t forgotten, and I haven’t forgiven myself yet.