“If there’s something you need that I’m not serving,” I said, “Speak up. Don’t be thinking, you ought to be polite. I’ll just get pissed off.”
It was the first meal I had ever cooked for Thomas. I knew nothing about diabetes, and we’d only known each other for a week or two. So I wanted to make it clear from the start that I would hold him responsible for his own health. I had no idea at that point, how complex a demand that could be.
“The pork, I continued,” was cooked with pineapple, so it’s sweeter than you might think.”
I thought I was being pretty tough, setting the ground rules from the start and not accepting responsibility for the blood glucose, only for the food. I was horrified to learn that so many people are not even willing to go that far.
I found a lot of angry bloggers in my research, but didn’t find much more online than the basic information Thomas had already given me. Articles were shallow. Descriptions of Type 1 diabetes slid obliquely into talking about type 2 diabetes. And when I tried to learn more about blood chemistry and insulin, the search inevitably led to one of two things: recipes, or ads from drug companies.
It was enough of a challenge for me in this new relationship, to figure out what aspects of Thomas’ personality were really Thomas, and which behavior was influenced by
low blood sugar.
But when the monitor started to fail, things got really interesting. And the need for more
information became urgent.
Communication between the two of us is the most effective tool we’ve had since that challenge began. Now I want to know, not just generally whether he’s high or low, but exactly what the numbers are. We’ve identified some old bad habits. And we’re having some success
with new ones.
Now we’re ready to take the next step.
We want the bus driver who stopped in the middle of nowhere and made Thomas get off without so much as a tic-tac to know that this is a serious medical condition, easily addressed with something as common as Coca Cola.
We want the FDA to know that we are watching and waiting for the artificial pancreas, an amazing and wonderful device that we hope will change the lives of young Type 1 diabetics in the not too distant future.
And we want the people who really understand hormones and ketones to speak out! Give us a clue! Doctor Barry Sears, are you out there? Anyone?
Until then, we invite families and friends of type 1 diabetics to join us in sharing the things we’ve learned that are not yet published. We’re not medical experts, but we’re walking the walk and sometimes, it helps just to talk.