11 November 2011

We Do want Diabetes Research, Treatment Innovations, & Care to Move Forward, Right? Part 2

I wanted to blog my thoughts on this in two parts. The first encompasses my reactions as they relate to picking our battles, and not causing unintentional negative outcomes - you know, the gift horse scares you senseless, so you kick it, not realizing it comes bearing gifts. Part 2, however, is about something much deeper, much closer to our hearts, and to the dark ebb and flow of fears we don't want to see, touch, or acknowledge.

Let me start by saying that I understand and relate to people reading the 1 in 20 statistic and questioning its validity, even questioning how their child or loved one with diabetes might respond if she / he sees the JDRF ad. Extending it to the notion that no one will have our kids over for play dates, sleepovers, or hire them for jobs as I've seen suggested in diabetes forums feels like such a reach, almost as if we've taken our initial reaction to the ad and designed a story around the ad that justifies our feelings of anger. That's not to say the anger isn't legitimate. But I do wonder if it's healthy, even helpful, to check out where this intense reaction comes from (the one perpetuated beyond an initial reaction.) At least, I needed to for myself, because when I first saw the ad, I felt numb, tearful, and PO'd in relatively short order.

First, I needed to check out my internal barometer. Once voiced, I had similar initial fears about the impact the ad might have, so I shared the ad with people. Truth is, we already have problems with being invited for 'playdates' (though now that my daughter's in middle school she says I'm not allowed to call them that anymore), sleepovers, and I lost my job. So, I had to stop and ask myself, does this ad really make any of that worse? I don't know, but honestly, I don't think it does.

So, I shared the ad, and honestly, most people didn't bat an eye. About half apologized for the way they've acted or treated us since my daughter's diagnosis in February. It was like a wake up call for them. The one friend who's home she actually still spends the night at? They're completely un-phased as we have plans set up. My daughter and I work out her needs via cell phone, and if necessary, I run over to the house (FYI, it's happened once in 9 months...) 

Second, and more concerning to me, I needed to look at why I was so ready to be mad at JDRF before looking into the facts, and really considering all the factors. For me, it boils down to needing something to be angry at rather than facing the idea that my kid might fit into a statistic like that. Seeing that ad, feeling the fear associated with numbers like 1 in 20 die, sets off a maelstrom of feelings, primarily anger at this disease, at the sleep deprivation, at the seemingly selfish desire to get more than 2.5 hours of sleep at a time, the things our kids have to go through and face because people don't understand type 1, or because they're afraid to be confronted with it. Fear that she could go too low one night, that I won't wake up to my alarms (BTDT!) and the worst will happen. Sadness and hurt that this is her life, there's no turning it off. It took nanoseconds and one line of text to bring all that up.

The problem is, that maelstrom has nowhere to go, it's a mess of hurt, fear, and yes anger that I can't do a damn thing with - so I subconsciously look for a target to aim it at. How about the messenger of the stat? Why not? They used it to get a reaction, it might not (we don't want it to) be accurate. Even though the supporting references do support it (depending on how you analyze the data), it's clear they sensationalized it for lobbying purposes. So, why not?

Truly, though, all that anger at JDRF, no matter how justified is a mirage to deflect against my own anger and fears for my child. I can let myself ignore them, and they will carry me off into believing this ad harmed my child directly by robbing her of play dates, changing how people perceive of and treat her, and end up in a self fulfilling prophecy. Or, I can acknowledge all the hurt, fear, and anger this ad generates. I can send a message to JDRF letting them know how the ad affected us, and then let it go with a promise to do something about the fear and anger I want to stay hidden. 

I can participate in online diabetes communities and share it with people who understand. I can try to channel my hurt, fear and anger into helping JDRF or whoever find a better tomorrow for my child. Or, I can accept that for right now, I have nothing extra to give - not even to fuel continued anger over an ad the rest of the world likely already forgot about.

They may not come through, but there's raw emotion imbued in the words and ideas in this post. I took the time to share them because I sense they're important, not just to me, but to many people fighting this fight. Clearly, the ad touched something deeply inside many of us within the diabetic community. It touched upon a fear we don't want, and our kids shouldn't have, to live with. Part 2 is about taking a minute to honor that side of it...because when we do, the fear loses its control over us. Sleep well, at least for the next few hours.

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