But right now, all I am is angry.
I have no reason to be angry. After almost thirty years living (some with more gusto than others) with T1 diabetes, I’d become relatively numb to the fervor surrounding a “cure”. Most diabetics (and their families) who have been around the block a few times have heard the famous “five year spiel” and the life-altering drugs/treatments “entering Stage 1 trials” . It’s heartbreaking, I can only imagine, to the parents of young children who haven’t seen the iterations of a potential cure.
I donate to various diabetes related charities, judiciously handing over my hope in dollar form. It was enough for me to think that perhaps my money would help the next generation. I’d long given up the dream of a cure and have been satisfied with living a long time. (My obituary will read: “…at the age of 104 and still skydiving up until the end…”)
And then, someone I trusted, wrote a blog post that changed everything. In it, he tilts his head back towards the heavens and shouts:
“I have given the majority of my time to the Diabetes Research Institute (DRI), not because the Foundation hired me; not because they have a huge amount of nice people. What they have had, and always had, is the same vision that we as a family have strived to achieve; to turn out the lights because the cure was found.
Now, it seems that the light switch may be just an outstretched arm’s length away.”
I read the entire blog post quietly to myself, then made my husband listen to me as I read it aloud, choking up as I got toward the end of the post where the man I met many years ago plainly stated:
“I am a diabetes dad……….but it very well may be, for not too much longer.”
My husband is no idiot. He’s the one with the clear and level-headed thinking that often talks me out of sticky situations and stupid mistakes (most of the time…) and his response to the post was:
“Christel, do you honestly think that they would allow him to announce something as important as the possibility of a cure on his personal blog?”
Here’s where I went wrong.
Yep. I thought it might be possible.
I used to work as an association executive for a large non-profit. It was drilled into me that any non-profit executive has a fiduciary responsibility to the company and to its stakeholders. When you speak publicly and mention the non-profit and its activities, it can impact (positively or negatively) the reputation of the organization, which in turn can impact the bottom line. It therefore behooves the executive to be incredibly careful not to say anything that could be misconstrued.
With me so far?
I foolishly thought that if a Vice President of Diabetes Research Institute made these inferences, that the press conference announcing the “quantum leap” huge announcement the next day would be about a cure.
It was a BioHub. (Thinking of having a T-shirt made saying: “I went to the DRI’s website for a cure and all I got was a request for donations.”)
It was nothing new. OK, so it’s a new concept. Wait. It’s not a new concept.
Other companies have described something similar, but so far, it was the first time that I was told (in a roundabout way, but it’s perception, people) that I would have to pay to make it happen. Without my donation, I’m stuck pumping and checking and complications…
Do they have a working model? Um. No. Have they figured out the anti-rejection issue? Um. No. Where it should be implanted? Um. No. Where they’ll get the islets that are needed to “cure” us? Um. No. But they do have a nifty bunch of ideas and a spiffy bunch of animations and pictures of people looking through microscopes.
In the software industry, this is called vaporware – a product that is announced months or years ahead of a predicted release with very little details. Often, the product never comes to fruition. I do believe that I have a case of the vapors…
To call this a “cure” is cruel. Moreover, DRI states that it’s not a permanent solution and that a BioHub might need to be replaced.
So, I’ve spent the last two days being angry, not really at DRI or Tom Karlya, but at myself for believing for a fleeting moment that I wouldn’t have to do the “diabetes dance” anymore. (My dance these days seems to look more like a dub step.)
I’m not going to be angry anymore. I’m going to write a blog. About diabetes. About living with diabetes. About realistic research and technology that works and the daily grind involving numbers such as 45 and 356 and maybe a 6.5 thrown in for good measure. There are a lot of great blogs already out there. Hopefully, there is room for one more.
So, in retrospect, I should thank him. I will, when I can stop being snarky. If it wasn’t for his blog post, I wouldn’t be typing these thoughts.
I stepped back from the diabetes social media realm a few years back to focus on some incredibly important things – a pregnancy and a daughter who lights my world. It’s time that I stepped back into the diabetes social media realm, tilt my own head to the heavens and begin shouting. I won’t cure diabetes, but I can sure as hell shout about it.
This is ThePefectD.