Our Community
Wednesday, March 6, 2013 at 9:10AM Yesterday I wrote a blog post that described how I felt about the DRI controversy. It was long, angry and just as I was about to post it, the man who started this whole mess wrote on his blog and tried to explain why he did what he did - I deleted my draft.
His words caused me to think about the DOC.
I've never met Tom in person, as a matter of fact I don't believe that I've ever "met" him online - but I have read his blog. I've seen how people in the community trust him, how they believe that he is one of them. I know that because that is how I feel about this man whom I do not know. I began to wonder if I am that person for you. I thought long and hard about your belief in my blog and the responsibility that your trust makes me feel. I tried to imagine what influence could make me write something online that could hurt so many people. I couldn't think of one thing in my life that could push me to so thoughtlessly disseminate my feelings as though they were more than feelings. What Tom did, in my opinion, was cruel and where he did it was unthinkable.
I was so angry that the appearance of hype was brought into our community, disguised as hope.
I'm glad that I didn't post my thoughts yesterday because they weren't thoughts, they were anger. Holding back allowed me more time to consider what must have been going through Tom's mind as he wrote and I can only come to one conclusion. Tom is a D-Dad twice over, he is a tireless advocate for us and I can only imagine that he wants a cure for my daughter as much as he wants one for his own children.
Tom must have seen something that made him believe in a cure. I, for one, am elated that there is research in the world that could make a man like Tom that excited. If that is the case, then I understand why he was so enthusiastic about telling us. He only made one mistake and I'm quite sure that he won't do it again, I'm quite sure that none of us will. His actions, misguided as they were, taught us all a very valuable lesson this week. Our voices are strong, they carry meaning and people are listening. We have a responsibility that is bigger than perhaps we may have imagined. We aren't just a collection of people connected by FaceBook, Twitter and the rest. We are a family. Actually, we are more than a family. We are people with diabetes and the people that love people with diabetes. We all want the same thing and we want it now. Tom forgot that for a few minutes, but I can tell that he remembers now.
If you were angry like I was, I hope that you can find your way past that feeling and join me in hoping that what Tom saw was so amazingly exciting that he lost his head for a moment. Because if that is the case, well, we all have something to look forward to. Even if Tom just mis-spoke or didn't give proper consideration to how his message would be received - he's done more for all of us than I imagine we could know... he deserves a pass. Trust me when I tell you that I was in full blown, Philly anger yesterday. I could have choked Tom with my bare hands. Today, I was able to see clearly again. I don't take how I felt is a condemnation of me or of Tom's actions - I see it as an indication of how much I don't want Arden and all of you to have to live with diabetes for one second longer.
One day this community will be the way that we all learn about the cure just as it is the conduit for finding out about advancements in treatment, support and friendship. We won't hear of the cure with a press release or a twitter post, our love will carry that message into each of our homes. You all are part of the most amazing man-made thing that I've ever seen. We have compassion for one another in amounts so large it boggles my mind. We help each other up when things are bad and we prop each other up until we can stand again on our own.
Tom, this is me propping you up. Don't beat yourself up too much. I may have done the same thing.
I can't wait to see what got you so excited.
DOC in Daddy's Blog
Reader Comments (6)
Scott, I hear (read) you - today and in the past - and I have grown to trust you. I have also read Tom's blog for quite awhile, and I know and trust him, too. His intentions are pure, I believe.
I know what it's like to write a post, and based on comments received, regret everything that was said. To wish that it could be taken back. To lie awake at night wondering how people could ever trust me again. I don't wish that for Tom, and I've tried to express that.
He's excited - and why not? Maybe there's something he sees that I don't. Like when Doctor Emmitt Brown slipped off the toilet in 1955, banged his head on the sink, and came up with the idea for the Flux Capacitor. It was just an idea, and a seemingly illogical one at that. and he had no idea what form it would take (a Delorian), what it would need to work (1.21 gigawatts) or when (thirty years later). But damn, was he excited!
That's how I see the DRI and DiabetesDad. Like an excited Doc Brown. Someday their dreams will become reality.
From one Philly native to another, I share pretty much your exact thoughts. I decided not to post anything on my blog because I wanted more time to think about it before I ended up saying something too quickly.
This is one hell of a post my friend.
Well said.
Empathy. Honoring struggle without trite solutions.
In my view empathy is what holds the diabetes community together. By empathy. I mean to honor another’s struggle without offering them a trite formula. I think the DOC does that well, most of the time. Lost of folks do that. You do, I hope I do, I hope Tom gets back to it.
From my perspective both the lines of honoring and trite were crossed, and crossed with forethought, by DRI. That is unfortunate, to the point that I agree with your assessment of both cruel and unthinkable.
Here is why I say DRI forthought. Days before Tom's Facebook post DRI sent out emails teasing "The Next Quantum Leap: The Biological Cure" in the subject line. Clearly the "The Biological Cure" hype was DRI's communication plan. So more than Tom's rationalization laced, "I'm sorry" is due. DRI need to be accountable for the hype they apparently hoped to manipulate. They need to return to honoring the struggle and apologize for trite formula hyping The Cure to serve their immediate ends. That should happen without the ‘but we didn’t mean it they way we clearly said it’ we have seen.
Let me be clear I am NOT saying encapsulation is a trite path to treatments. Hyping it as "The Biological Cure" now is. "The Biological Cure" is not the same as saying it a very promising path to a possible cure that is soon to enter human trials. As they say on sesame Street, "One of these things is not like the other." One is cruel, the other is honest.
Living and breathing the science of type 1 isn't same as the emotions of living with or parenting a child with Type 1. DRI has shown the clear appreciation of the relationship the two. In an 2010 story, Rive Greenburg quotes DRI’s Dr. Ricordi saying, "I hate to over-promise because so many people have been disillusioned." So it is even more disheartening to see DRI choose hype and discredit Dr. Ricordi’s prior empathy for the community.
Calling it The Biological Cure now completely discounts what that they have achieved buy putting it on the same footing as every other claim of a cure in 5 or 10 years.
Hyping a cure in 5 years as is not honoring the struggle. A cure in five years is THE standing joke of false hope. We all know it and know why. I suggest that by definition anything 5 years out is NOT a cure. Five years is a lifetime with type 1.
The idea becomes trite when put into the context of the cases where 5 years is more than a lifetime. Lets all hope those are few. Sadly we know none is not realistic.
Am I encouraged by encapsulation? Sure. Have been for years and years. Expect to be for years to come. I am encouraged by lots of stuff: better basal insulins, faster bolus insulin, better sets, glucose responsive insulins, innovation in CGM, better data management and mostly the peer to peer community.
Am I very discouraged by the premeditated choice of hype over empathy by DRI? Absolutely.
I suggest that tuning out their communications, specifically this campaign is not a trite response. If this becomes a successful communication campaign, Who will be next to play the hyped cure card? What will that serve? When will we see copy cats? How does that honor the struggle for the next few years?
I decided to unsubscribe to DRI email as a step in turning down their choice hype. I encourage other to do so too. I did so to send the message that choosing hype over empathy is self selection out the community that honors other’s struggle without offering a trite formula.
I welcome an honest conversation about advancing encapsulation. This wasn’t it. Rewarding it as such only invites more hype.
Scott, this is exactly why I haven't written about this yet. We're all putting ourselves and our passions out there for everyone to see. I need just a little more time to think about it before I can write about it. Thanks for a thoughtful post.
Tom does good in our community. He cares, is passionate, and is so hopeful. And he inspires so many. I'm also hoping we can move passed this, not sweeping it under rug or just ignoring or forgiving, but using it as a way to have a more contemporary discussion about the interactions between research promise, researcher thrill, marketing and fundraising of all this. Obviously, understanding how "hope" plays into it differently for many people (Your Hope May Vary). Together, as a community. Thanks for your writing and sentiment, Scott. Truly appreciate your perspective on this.
Thank you for all of your thoughtful posts. I think that this moment in time will act as a learning tool for us all. The community is strengthened, united further and matures at each of these watermarks.
Be well,
Scott