December 4, 2011

Of the ER, the Web and Perfection

A very dear friend is embroiled is some online nastiness over her blog, diabetes and a trip to the ER. It illustrates one of the sad things about reaching out and sharing as an e-patient, some folks thrive on being superior, and thrive on negativity.
I don’t know what it is that motivates them. I don’t much care. I do know that there is a difference between pettiness and being constructive. I know that an am fiercely loyal to my friends and I make no claim of being un-biased in my regard for them. 
I have twice been to the ER with a child experiencing serious abdominal pain. The kid in question being type 1. As a result of that insulin production inability, there was extensive conversation between the physician and us about diabetes care. This included, at the doctor’s request, detailed information about A1C. I don’t know how it was relevant but apparently it was. I therefor presume that if I had not had those number handy they would have drawn blood to calculate them since they ran a bunch of other far more costly, timely and intrusive test.   
One of the very many mind tricks diabetes does is inventing new variations on the game of This is Your Fault. Diabetes is diabolically adept at this. I haven’t met a person or parent living with type 1 who hasn’t been sucked into the vortex of this game. 
When you are in the ER and someone in scrubs asks about control, diabetes takes the game to a whole other level. It makes a great NFL two minute drill look lethargic. Diabetes covers the whole field in two second. 
So when the Doc asked about A1C, and even though I knew the numbers were good, had been good for a long time and I know diabetes rat bastard mind games, I went straight to the guilt over not being a better parent, as measured by A1C. I felt my shortcomings with diabetes, particularly my willingness to the let the teen self manage put him in the ER. 
In those seconds, diabetes covered all 100 yards, scored a touch down, two point conversion, took a penalty for excessive celebration and even while winning big, kicked onside, recovered for another TD before the clock ran out. It brought game and crushed. The game was simple, it was my failure to be a perfect diabetes parent that put my kid in the ER in excruciating pain. 
On the second trip, when they did take out his appendix, we refused to let the hospital manage his diabetes. Specifically: no change in insulin, no change in delivery method, no steroids, no kidding. The folks in the pressed lab coats with embroidered names were not happy and I had to sign a bunch of papers as a result of their displeasure. 
I am leaving out details but feel free to post comments and criticize based on your assumptions and partial knowledge of the situation. I will read them and may respond just don’t expect me to care too much about your presumptions. 
The point here is diabetes plays the Perfect Number Drill as part of the This is Your Fault game. It defines perfect quantifiably and is often supported by a medical industrial process that behaves as if it believes in a numeric definition of perfection is actually and perfunctorily obtainable. 
It isn’t and it isn’t what the goal is anyway.
The goal of being diabetic is to do what one can, to be someone who finds and shares motivation to keep doing what they can. They know that perfect numbers are not possible even while they get sucked into the Two Second Drill. Sure diabetics may get sucked into diabetes mind games. Hopefully they know how to come out of it with only a few dozen points run up in the process. The are human, they feel the emotions but they bounce back and in part they do that by sharing. They know that others are there for them and that in turn they will be there for others. 
The perfect diabetic would be one who shares imperfections as the reality of diabetes while being focused on the joy of life outside the diabetes game. Perfect doesn’t exist but there are some who play the game very admirably. 
Then there are arm chair quarterbacks. They have no skin in the game but they think they have something to say, that's fine, but why the {obscenities deleted} listen to them? 

PS: to the DOC and Kerri in particular. Love Ya / Mean It