Recently while working on my own temperature blanket, I had a brain-storm....this system can be applied to almost anything that can have a number assigned to it. Well, what number do all Type 1 Diabetics have constantly on our minds? Blood Glucose, of course!
So I came up with the brilliant idea of doing a Blood Glucose Blanket - in my mind's eye, I'd assign shades of green for the "ideal" range (say, 70 to 150), reds for the "lows" (X to 69), and purples for the "highs." I was so excited about my idea, and I thought maybe I could work on it and give it to my daughter next year for her birthday. I was PSYCHED!
Because I wasn't sure how to set it all up, I decided to post about it in one of the many online groups I'm in that focuses are crafting - this particular groups is just for "snarky" or "offensive" crafters, because I am by nature a pretty earthy sort of person, and that's where I felt most at home.
I was rather startled by the reaction.
I got a LOT of "wow what a great idea!" reactions, and, "what a loving and original way of showing how much you care!". Those were gratifying, to be sure! However, I also got a few responses from adult Type 1 Diabetics which were overwhelmingly negative - here are a couple of examples:
" Honestly, I would hate this. I’m also Type 1. I just had a conversation a few weeks ago with a bunch of my Diabetes Camp friends from almost 20 years ago about how much guilt and shame we already feel about not taking care of ourselves better"
"I know for sure I'd not want to see a year of my failures and struggles to stay even mapped out on such a visual scale. It's hard enough getting my book reviewed with the nurses every few months. "
I realized something that I hadn't really understood before - my daughter's doctors had told me more than once that scaring her into taking better care of herself is proven not to work. I was so frustrated with her tendency to pretend she wasn't diabetic, and ignore her BG, and fail to bolus for meals.....I was terrified for her, and wanted to try to get her to understand what a dangerous game she was playing. And here, I suddenly had a real world demonstration of what those doctors were trying to tell me. These adult Type 1 Diabetics in my crafting group were mostly young - i.e., between the ages of 25 and 45. They were products of the medical system in place between the 80s through the early 2000's, during a time period when it was common practice to try to shame patients into being healthy. I remember those days, and I had noticed more than once that there had been a shift in attitude in recent years. I particularly noticed it at the dentist, where I no longer felt like I had to be ashamed when I knew I hadn't taken adequate care of my teeth, and I had to face my dentist and hygienist with that knowledge. I know I avoided dental appointments for years because of it. But....they no longer reacted that way. They stayed positive, suggested ways I could improve, warned me about possible damage, but I never once felt ashamed.
THIS is what my daughter's doctors were trying to tell me - if I stress the dangers, and the fears, and try to shame her into doing things right, the long term results are a shame in the illness itself. I have always, from the very beginning, treated my daughter's diabetes as "The New Normal". I never, ever, wanted her to feel damaged, or broken, or somehow LESS than her peers. I wanted her to be realistic about what it meant, but I also wanted her to know that it didn't mean she was any less in any way.
And the idea for a blanket is what demonstrated to me what her doctors had tried to communicate so many times. There is an entire generation of Type 1 Diabetics out there who overwhelmingly feel that they are inherently not good enough because they don't always perfectly maintain their illness. That is heart-breaking.
So, with all of that in mind, I decided 2 things: 1. I would talk to my daughter first, obviously. I would explain the idea to her, and see what she thought of it. I would make sure to ask her how she would feel about having a visual, hands-on representation of her daily struggle right in front her her. I would then let her decide if she liked the idea. and 2. I would not assign colors based on value judgments. Instead, we would pick colors she liked, in a configuration that would allow us to do ranges from low to high. That way, looking at the blanket it wouldn't be immediately obvious which were "good" days and which were "bad."
And I did so. I talked to my daughter, and before I had even finished explaining my idea, her eyes LIT UP! She was so excited by the concept! I asked her if it would bother her knowing it would show good AND bad days. she said no! I even had her read some of the comments from my post, and she seemed honestly baffled by them - why would you feel shame? She didn't do anything to deserve this disease; yes, she fails to take the best care of herself sometimes, but it's still her doing the best she can with an illness she can't get rid of.
So.....what is my point? I guess....thank you to the medical professionals who figured this out. Thank you to all of the doctors and psychologists who did all of the studies and surveys which taught them that there was a problem with the way medicine was practiced, and actually caused a change in the way patients are treated. It may seem silly that this all came from something as unimportant as a crochet project....but I really mean it. Thank you. Because of all you do, my daughter not only can look forward to a long and healthy life, but she won't do so hating herself the whole time. There is no price I can put on that.
I always knew crafting was cathartic....
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