So most of us know what happened last week with our super top-secret cure-that’s-not-really-a-cure exploding Internet DOC rage fundraising nonsense. And everyone has an opinion on the subject; most of those opinions have already been (very eloquently) expressed in others‘ blogs.
Multiple times, I tried explaining the situation to some non-diabetic, non-DOC friends, family members and co-workers. I work at an advertising and PR firm, so I assumed most of my contemporaries would really get what a shitty PR move the *fauxnouncement* was. Instead, most people just gave me a half-smile as they tried to empathize with a concept they couldn’t really grasp.
So. For those unfamiliar with the “5 more years” nightmare and all the feelings that can beset an Internet-full of diabetics like a bad case of sorbitol-induced diarrhea, I attempted to retell the story using the most expressive content I could find: GIFs.
[Many thanks to Martin Wood, who helped collect the GIFs below.]
March 4, 2013. People with diabetes and parents of children with diabetes across the world began their days with carb-counted bowls of cereal, infusion set changes and finger pricks — as usual. But then, a stirring.
I saw it first on Kim’s Facebook page: a mention from Tom Karlya, Vice President of the Diabetes Research Institute and self-appointed Diabetes Dad, about “What We Have Been Waiting for Since Diagnosis!!!!!!!!!!!!!!!!!!!!!!”
Pretty exciting announcement, right? Only it wasn’t really an announcement. It was an announcement that there would be an another announcement. It was all top secret, see?
Those of us who have had diabetes for 5, 10, 20 or more years were skeptical. After all, we’ve all been told since the day of our diagnosis that a cure for diabetes was “5 to 10 years away.”
We’ve also seen mice, dogs, wombats, fruit flies, Shetland ponies and other lab animals cured of Type 1 diabetes. None of it’s translated to human stuff.
But then, this is Diabetes Dad, right? Dads don’t wildly exaggerate for self-promotional purposes. Dads don’t do things to get your hopes up and then smash them to bits. Dads aren’t mean, are they? What if . . . what if he’s for real?
In other corners of the Internet, some parents of recently diagnosed children were flipping the hell out, God bless them. “They were right!” they must have been thinking. “It’s been 4.5 years since little Johnny was diagnosed, and now, the cure has arrived! The nightmare is over!”
But real information was still hard to come by. Ol’ Diabetes Dad was sworn to secrecy, and the Diabetes Research Institute’s website was down — it takes a lot of website preparation when you’re about to make an announcement that will change the diabetes world. So everyone had the rest of the day — and the night — to dream big dreams about the DRI’s news.
March 5. The time had come. DRI’s website was back in business, and they posted a video that would explain all the details of this diabetes quantum leap.
It was the BioHub! A small sponge-y thing that goes in your body that makes insulin! You don’t have to take anti-rejection drugs! It gets all filled up with re-generated or transplanted islet cells, and the scientists can keep it healthy with “helper cells” and oxygen and things. (For a very well-written description of the BioHub, see Mike Hoskin’s DiabetesMine article.)
Diabetes will be reversed!
The announcement came with a few caveats, though. See, the BioHub hasn’t actually been invented yet. Per se.
Also, the scientists at DRI don’t really know where they’re going to get all these islet cells.
And they don’t really know where in your body they’re going to put the BioHub. Also, it’ll cost a lot. Like, A LOT. And, it’s pretty close to several other projects that are being done by other organizations. So it’s not really a new thing, even though it is really cool and amazing and still imaginary.
At the end of the explanation, the BioHub video tells us that, if we want this thing to actually happen, it’s up to us. And our money.
And the best part: this cure should be ready to go in . . . five to seven years.
I’d say that people were pissed, but that might be an understatement. (According to Diabetes Dad himself, people were particularly nasty in email messages, and some people even threatened him and his family.) The DOC was alight with anger and frustration and other bad feelings.
We’d been promised something cure-like, and instead had been presented with another theoretical treatment that still required lots of money, lots of time, and lots of patience. A theoretical treatment that, if it had been announced without the previous day’s fanfare, would have been welcomed as a big step toward islet cell transplantation.
Now, all the science and technology and forward movement that so many people had worked very hard to accomplish had been overshadowed by one man’s really bad blog post.
Diabetes Dad apologized. When he said things like, “The promise of restoring natural insulin production to millions of children and adults living with diabetes will be outlined” or “I am a diabetes dad……….but it very well may be, for not too much longer,” he didn’t really mean that we were close to a cure for diabetes. He just meant that he needed more money to get closer to making a plan to cure diabetes.
March 6 – Present. Diabetes life goes on. We test, we inject, we eat, we repeat. We try to remain grateful for the amazing tools we do have, and keep a little bit of hope alive for the day when a cure (however you define it) really does arrive.
And we remember that sometimes, as wonderful and dynamic as the Diabetes Online Community is, shit gets out of control — fast. When something sounds too good to be true — even when it’s from a trusted member of the community — it probably is.
It’s better to take a step back, breathe, and go eat a cupcake.