Category Archives: Personal

Advocate.

Warning: This is one of those posts where I’m going to dig deep inside of my head, grab a collection of thoughts, and try to make some sense of them. It’s completely unstructured, and as I start typing, I have no idea how it will end. My grade-school English teachers hate that sort of stuff.

It’s about advocacy. Or more specifically, being an advocate.

It’s a word I struggle with all the time. I can’t quite understand what it means or what obligations come with the name. Is it a role that a person chooses? Or is it a title bestowed by others based on how he or she is perceived?

Is it a privilege? A responsibility? An achievement? Maybe it’s just a self-proclamation — a sash that anyone can pick up at their local 99-cent store and sling over their shoulder. (Before you ask: I’ve never actually seen a sash that reads “Advocate” — it’s just a metaphor, and a poor one at that. But it does give me an idea…).

The term gets tossed around a lot and, to be honest, I’ve been reluctant to include myself in the group. The reason I came to the ‘net to talk about diabetes was simply that — to talk. To exchange thoughts and ideas with people like me on-line, because I really didn’t know of other Type-1’s off-line. I sought companionship and understanding, and maybe an exchange of some tricks-of-the-trade along the way.

When I sought my way into this online community, my goal was to become one friend in an established circle of friends. That was expectation, and to some extent, I’ve accomplished that. Saving the world was never on my mind.

Doing anything on a grand scale was not my ambition; I’m the type who tends to avoid the spotlight, not attract it. Never did I consider myself an Advocate.

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White men can’t sympathize

“See. if I’m thirsty. I don’t want a glass of water, I want you to sympathize. I want you to say, ‘Gloria, I too know what it feels like to be thirsty. I too have had a dry mouth.’ I want you to connect with me through sharing and understanding the concept of dry mouthedness.”

– Rosie Perez, as “Gloria Clemente”

Image credit: 20th Century Fox

Image credit: 20th Century Fox

Perhaps I shouldn’t be taking cues in DOC behavior from a movie. Perhaps I shouldn’t even be quoting a movie that was released — oh my God, I just looked it up, and boy do I feel old! — twenty-two years ago. But that scene plays through my head a lot as I read of the tough times that some of my fellow PWDs are going through. I see someone struggling, and I turn to a movie about basketball and hustling for advice.

(White Men Can’t Jump is a really funny movie. You should go out and rent it. Or maybe they have it on that newfangled Netflix thing. Unfortunately, I can’t find a video clip of the scene, but there’s an audio clip here; it’s the second one from the top.)

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Another year forgotten

I’ve never been good at keeping records. I don’t mean the day-to-day blood sugars, but the records of real moments of significance.

Just before I started writing this post, I began a post (one of many posts still unfinished) titled “Reflections”, in which I chronicled the major advancements in diabetes, not over the past twelve months, but over the last 32 years.

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Twist and shout

Over the past year or so, I’ve been finding it much more difficult to put infusion sets in certain parts of my body — namely, my lower back and upper butt.

The routine used to go like this: I’d twist my waist, torso, and neck so I could get a good view of the spot that’s about to be traumatized by the long insertion needle. Then I’d jab, remove the adhesive covering, and retract the needle. Easy.

Nowadays, I rotate my waist as far as I can, wincing from the pain and resisting the urge to scream, keep my torso straight and solid, and then I crane my neck in an attempt to get the site in my peripheral vision. Next, I jab, probably at a less-than-optimal angle (causing more pain), remove the adhesive covering, retract the needle, and curse what old-age has done to my body.

All the while, I’ve slid my glasses down from the bridge of my nose so I can get a better view. I look, and feel, like a cranky old geezer from an earlier generation.

image

If this is what diabetes at 39 feels like, I hate to see what happens when I turn 40.

I suppose loss of flexibility just happens when a person gets older. Perhaps my regular amount of exercise (none) just isn’t enough. Maybe some routine stretching or aerobics would help my flexibility (while, at the same time, the increased muscle mass would reduce the already sparse locations on my body suitable for traumatic insertion-needle jabbing).

Seriously. Finding adequate real-estate for a new infusion site on my scrawny frame is like a developer looking for a vacant parcel of land on Long Island for a new shopping mall. It seems there’s nowhere left.  Yet, somehow, we both squeeze it in. Somehow.

But if my ability to twist becomes even more limited than it is today, and the entire back half of my body becomes off-limits, I’m totally screwed.

That thought really freaks me out.

Numbers

Scott-and-ZMy youngest son — for the purposes of this blog I’ll call him Z — is obsessed with numbers.

On Saturday night, he had a ball pressing the numbers on my phone’s calculator app. It kept him entertained for hours. He’d touch the digits and laugh as I recite what he just  pressed. He was hysterical when he tapped, and I said, “parentheses”.

He does love other things that are more appropriate for his age: like waffles, Elmo, hockey, and baked beans. But the whole numbers thing is a strange obsession. While I’m driving, he sits in his car seat in the back and counts to 20 (usually skipping a few numbers), over and over. And over. And… you get the picture

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