Wednesday, June 1, 2011

It's Nice to be GOTTEN

There was something else I wanted to touch on about what I learned on my road trip to Beta Buddies.  It's a thought process I've touched on here before.  Fucked if I can remember when that was though.

As a person with an invisible disease one of the hard parts for me is what others don't see.  Recently I had a friend applaud me for the way I deal with my diabetes.  I don't see this friend too often and never for more than a few hours at a time.  They had this idea that I must be doing well based on what they see.  But as my mum would say, "perception is everything."  When I leave them, IT'S still here.

I didn't play the sob story but I kindly reminded this person that they only see a wee portion of life with diabetes.  A complete outside point of view.  They don't see all the little intricacies that go on behind the scene.  I could easily list the tornado of frenzy but most of you know what I'm talking about.

Most of the non-PWD or non D-carers witness snapshots of life with D.  Co-workers, friends, family.  Sure maybe they've seen a low or two, maybe even a really awful low.  Maybe they've seen emergency site changes, injections and BG checks.  But, they don't see the rest.  It's like an iceberg.  Just the tip.

When I witnessed most of the "Day-In-The-Life of Parenting a Child With Type 1 Diabetes" it was refreshing in a way.  It was kind of nice to see someone else struggling with all the behind the scenes stuff that I struggle with.  Not that I enjoyed watching them struggle, I just enjoyed the outcome of not being the only one. Barriers get broken down when I don't feel so isolated dealing with D 24/7.

It brings me back time and time again to those three words.  "I GET IT".  Reyna gets it.  Joe gets it.  Even his sister and his father Get It!  That first night when Joe had a low after dinner I was right there with him understanding what was going on without having to say a word.  It was even more so because literally 5 minutes later I felt the creeping suspicion that my BG was also going low.  It did, and it required treatment.  Maybe it's like how somebody yawning makes you yawn?

What am I getting at?  It was so reassuring to be in a situation where they really truly "got it".  All of it.  Especially the parts that I can't even talk about.  The burdens and the mental strain.  They know that sometimes I cry myself to sleep when D frustrations get to me.  They know the guilt that surrounds food and the bullshit high maintenance about simply going out for a stroll.

From someone who lives alone, it's nice to be "GOTTEN"

This picture has nothing to do with being "gotten"  I just think it's really sweet.


  1. That is a sweet photo :) And you just made me want to hug my type 1 sister. I forget how blessed I was in a way...that I had a type 1 sibling in the house. I mean I wish she didn't have it but at least each of us had someone at home who truly understood and got it and like you's so reassuring. Lovely post, Scully.

  2. So well written Scully. While we hate seeing anyone have to go through what we do, it's true - there is something so reassuring about knowing people that understand the pain, frustration and depressing thoughts that come with "D". Thanks for sharing this meaningful post. We totally "get" you. ((Hug))

  3. Tara here- Still having trouble posting as me, hummmmmmm. Great post. I always wonder what it is like to have something that is so all consuming and yet no one can really see it. I am so in awe of your trucking on with the running and everything because I suspect it adds a whole other level of care and yet you soldier on. I think you are pretty dang inspiring. Oh and of course I love the picture at the bottom. ;)

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  7. Welp, I am crying like a big fucking baby! Thanks Sculls. I think that is what was so comforting to me too. You got it. You understood...and you even provided me the insight of how a 520 would be difficult for you to be out and about rollerblading with etc. I know it must be hard...but, I didn't truly know until a PWD was there with us and witnessing the "goings-ons" that we have going on...if that made any sense what-so-ever. The IRL meet-up made you more like family to me. You "get" even tolerated me...and all my talking!

  8. Ah, yes, to be 'gotten' is a wonderful thing!
    Last summer Bean was to have a standing playdate every Monday...D hit after just one of them. When I called the mom to tell her that Bean wouldn't be there the next day, she told me her sister was a T1. HUGE sigh of relief to know that she 'got it' and would be OK with Bean coming to her house. Those Mondays were even more precious!

  9. I don't have it.

    I don't want it.


    I would like to GET it!

    It sucks not knowing how to be supportive, how to GET it like Joe's sister and father.

    Your informative Blog helps bridge the "Getting It" GAP.



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