Day 6 Topic: If you have been blogging for a while, what is your favorite sentence or blogpost that you have ever written? Is it diabetes related or just life related? If you are a new blogger and don’t have a favorite yet, tell us what motivated you to start sharing your story by writing a blog? (Thank you Laddie of Test Guess and Go for suggesting this topic.)
I have been blogging for a while but don’t post enough for it to feel like a long time. I was curious about what I would do for this topic. I’ve written more than once about my motivations for starting a blog and it’s hard to think about having a favorite post or sentence (I’m my own worst critic). The topic is a good excuse to read back through a couple of years of posts though, and I did find something in a post that I decided was worth restating.
It doesn’t even go all that far back — just to January of this year. We attended a brief talk by Ed Damiano about the Bionic Pancreas. One thing I said in that post was:
I still don’t think I can believe that it might be available in the fall of 2017 (when Damiano’s son is due to go off to college – his goal) – but it’s hard not to believe that it will be available. That is more than I have hoped for a long time.
It’s hard to lose hope. I find myself cringing whenever people try to tell me about some amazing new discovery they have heard about. They are excited to tell me something positive and want so much to be the bearer of good news. And I’m lucky, it’s never about cinnamon curing diabetes or how Halle Berry weaned herself off of insulin. It’s always a report they read or heard about encapsulation or a cure in mice or the artificial pancreas or islet cell transplantation… What is discouraging is how discouraged I feel in the face of all of that hope. Truly I think the research that is happening is some of the most exciting ever – people are making huge strides in understanding so much about diabetes and that leads to new and innovative approaches to both managing it and someday finding a cure. I get that. But, despite how promising a report makes an advance sound, it isn’t going to make any difference in my daily life tomorrow or next week or even next year. So this person who is only telling me about it because they care wonders why I’m not happier at the news. They don’t understand that I was told in 2001 that there would be a cure in 5 years and other PWDs were told that 20 and 30 and 40 and 50 years ago. They don’t understand just how far away we are from getting that mouse cure to work in humans (if ever). They don’t understand how hard it is to get excited about “someday, maybe” ideas when every day we are watching our 7-year-old go through the literal highs and lows, and we worry about her living through the night, and I know that every day raises my risk just a little bit more for serious complications. Every day is filled with carb counting (or SWAGing), finger pricks, and getting things wrong all the time – things that when you get them wrong make you feel lousy at best and could land you in the hospital (or worse) at worst.
I really don’t like being negative. I usually say “yes, the science has come so far,” or “it’s exciting to have so much research going on.” And if someone asks more questions or pushes for a more enthusiastic response then I might try to explain a bit about how long such things take, how much we still don’t know, how expensive new treatments can be even if they do make it… I doubt it helps people be less disappointed that I’m not more excited, or (perhaps even more commonly) that I already know about this “new” advance they just heard about.
Anyway, enough ranting about that. That is just one of the big places in my life where my hope, now pretty ragged, gets highlighted for how many holes it has in it these days. I can’t get my hopes up to a high level because the waiting and disappointment is just too hard. For my own sanity I need to try to stay interested and curious without actually pinning my hopes on any particular “cure.”
But, Ed Damiano’s presentation was something different*. As I wrote in my post:
I had tears in my eyes during parts of his talk. I felt that scary feeling of daring to hope for something.
But, it is the paragraph at the end of the post that most made me want to share again. My hope that all of us touched by T1 Diabetes get moments when we can feel hopeful. Here’s that paragraph. I wish you hope.
I hope that every person with or affected by T1 gets to experience something this year that makes them feel hopeful about better days ahead. Whether it is a scientist talking about advances, a new friend who gets it and makes them feel less alone, or a no-hitter on their CGM — we all need to feel better about the future.
*If you don’t know about the Bionic Pancreas project, or want to learn more, check out the web site or this video. And if you are a person who has the means to donate to a cause and this is important to you, please consider donating to the project.