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)
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.