Apparently, silence can be deafening. With Monday’s pre-announcement of some huge news coming the next morning from the Diabetes Research Institute, my in box and text messages and Facebook messages were binging like the pinball machine in “Tommy.”
What do you think? Why are you saying nothing? I’d chosen to hold my thoughts until I saw the entire DRI program released. And now it is out. So what do I think? In some ways, I want to keep to myself what I think. Because I don’t want to hurt feelings. Because I care deeply. Because some parts of this are icky. But as one mom beseeched me, “We depend on you, Moira, to be a calming and honest influence.” I built this reputation. I built this blog. And so comment I must. Here is what I think. (And yes, I am quite sure my children, husband and many friends are howling at the idea of me being calming! Or an honest influence):
I think hype and hope do not make great bedfellows. Because really, if you take the DRI plan for what it is; it’s really, really interesting. It’s also positive: whenever you have that many incredibly brilliant people get on the same page and pinpoint their focus on a goal, it’s good. Whenever you set out to funnel lots of funding into answering a question, it’s a win (even if the question is answered, nope, cannot do it; it’s answered. I learned long ago that in research, any definitive answer is a step forward). So really, DRI’s announcement should have made today a good day.
Note I said “good day,” not “historic day.”
And that’s where the hype came in. And where what should be a “good day” goes somewhat off the rails. I am impressed and astounded at how quickly the hype spread through the diabetes on line community – if you ever doubted the power of social medial, study this case – but what was being said made me queasy.
Somehow, the announcement that something big was going to happen just sparked something in people, particularly in those who are newer to this diabetes world. Moms and dads and cousins and friends posted about how they were not going to be able to sleep until they heard what the “big” was. The celebrated in advance with comments like “This could be IT!” and “Could be my best birthday present ever!” and “Finally, finally, the answer may very well be coming.”
I think they were responding to not the blog post about the “upcoming announcement” so much as to the headlines shared with it. I know from years as a newspaper editor the power of the headline and the wimpiness of the fourth paragraph mention. Some of the headlines were like this:
This could be …. What we’ve been waiting for since diagnosis!!!!!!
The world will change forever
Add to that DRI’s decision to take down their entire website for the 24 hours until the “announcement would be made” and you’ve got a whole lot of crazy going on. Folks who’d never heard of DRI read that something big was happening. They went to the site and … gosh: if a company takes their website down for a day, it’s got to be big, they thought. It’s just how we perceive things in this on line era.
But me? I didn’t know what to think.
And at first, I felt like a hardened, jaded freak. How, I asked myself, could I be doubtful? And yet …. While I was excited to hear about some new path totally worth taking, I was not expecting to hear the world was going to change forever this next day. After all, I’ve been around this block. I’ve seen other really great research breakthroughs that would be reason enough to be celebrated on their own labeled as “the cure.” I’m lucky enough to be very educated (in a laymen’s kind of way) about lots of research (you can be too. Sign up HERE). So I know the dealio.
But a lot of parents don’t. And in a way, as I watched the hype build and build to a frenzy, I wondered if I’d lost the ability to hope.
But I do hope. Just not with hype. I donate and raise money and volunteer and help. I learn and listen and study and ask. And I do it with determination and confidence that I am helping make the world a better place for my daughter and for many.
That’s enough for me. The newer parents and patients – the ones who have not had the time yet to do the things I’ve been able to do (16 years of being a D-mom lends you that time)…. I was just scared for how they were going to take this. You could hear their voices from the screen. They were over the moon excited about what was to be. And for whatever reason, they visualized a cure. Or something absolutely almost there.
And yet, I doubted myself. Could it really be? (Yes… the hype started to get to me).
Then the announcement was leaked, via a news station video. And, as I had worried would happen, a great many people lost their minds. They are angry and divided, this diabetes community right now. Some are lashing out, others are saying they refuse to hope again. Others are supporting the messaging and saying people are just too overreactive. Others are saying they don’t like the DRI plan. Still more are asking if it’s time, again, to figure out what a “Cure” really means to the diabetes society as a whole.
The DRI VP issued an apology this morning, and I think that’s good.
But I also think we all, as a community need to figure out just how we message these things. Because, as I said, hype and hope just don’t make good bedfellows.
This should have been a happy day. The concept of some kind of way to replace islet cells and protect them via a “hub” is an intriguing one. One worth looking into. The team DRI has focused on it is a brilliant group. And had the DRI chosen to simply launch their updated website and put on out the message they sent out in their DRI Insider email that day, we’d all probably be happy and talking about how interesting and innovative and encouraging this is.
I hope this is a lesson to DRI. I know other organizations that fund research have learned this lesson in the past. Now it’s DRI’s turn.
Don’t play with our emotions. Don’t toy with our souls. Don’t dig into the very part of us that aches the most – the part of our hearts where we store our love for someone who needs a cure – and poke it with a stick.
Because doing that takes what should be a good day (not an historic day) and just turns it bad. . Let’s all make a vow to share and share often research news and information, but to do it with a calm grace
Now, on to learning more about DRIs program. No more hype. If we can push that away, we might just find some hope under there.