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What does a mediocre climber know about diabetes research? Well, compared to some, I suppose the answer is ‘not much’. However, I do know a whole lot about the way someone who has been successful managing their diabetes for 16 or so years feels about research–how the research landscape looks from the outside. The reality is that I have always felt disconnected from diabetes research. I haven’t been “against” it but I always felt like it was very detached from the day to day needs of people like me, who lived with diabetes. It stole the spotlight when the public thought about “helping out”. I’ve always believed that research that promises a cure but very little else in the interim is going to miss the mark for a lot of us, because after years of hearing these promises we get tired of the same old hash–and we get better at living with our diabetes, so we check out–and are no longer motivated by thin promises of a cure.
No, I haven’t forgotten that I now work for a diabetes research non-profit organization, the T1D Exchange and its community called Glu. In fact, I feel like this Seinfeld clip is not far off the mark from my own situation because I have always been very candid about how research has made me feel and why. I didn’t make any attempt to avoid being forthright as I went about interviewing–and I felt like my candidness was appreciated. That’s the first thing that made me feel differently about the Glu research community.
Here’s where it gets interesting though…being part of an organization where everyone is truly open to understanding how the diabetes community feels in order to CHANGE the business as usual approach has really given me new hope for the process by which research happens. Not because I am desperate to never have to take another injection and have bought into the idea that a cure is around the corner–but because I see at work a process that has integrity and empowerment at its heart, not distant promises and big “asks”.
Here’s what I mean: if you ask for money for research and then I don’t know where my money went or to whom or for what, I am going to be expecting some amazing final product (a cure) and if it doesn’t turn up at my doorstep, I am going to bail. I am going to feel like the system doesn’t work and I am unable to do anything other than give more money. But why should I do that–since I already tried it once and it didn’t get me anywhere? I certainly think that’s a very reasonable, if oversimplified way to feel about the process.
Alternately, if you say, “you have the power to BE research. To influence and guide it. Your diabetes contains data that is critical, so become a member at MyGlu.org and you will be able to contribute meaningful pieces of information that will collectively keep moving us closer to a cure as a community–which will be there for you between this point and that. Take action–on a simple, immediate level–you don’t have to even leave your computer. You don’t have to write a check and hope for results. Do something different,today.” That makes me feel entirely different. I don’t expect the world to fall in my lap, but I know that I don’t have to leave research to someone out there in some lab somewhere. I can be empowered and get involved right here.
That’s the “ah-ha” moment I had of recently. That’s where I realized that it’s amazing to see an organization take head on the disconnect that so many of us feel–and not be threatened by it but turn it into a solution that gives us the power. I’ve been skeptical not of the research itself, but of the system that seems unwilling to face these uncomfortable realities. So if you don’t think research matters because your diabetes is something you’ve already got sufficiently dialed–don’t bail. If you think it won’t ever happen because it’s not profitable to the industry–don’t be too jaded to take another look. If you already fund another research org–know that you can double your impact just by logging in and taking a few surveys right at your computer.
If you’re wondering where LivingVertical went and think it’s been turned into a different type of space–fear not. I want you to know how to be empowered–and I want you to know when I feel empowered too. I have some mighty big climbing plans in the works for the coming year and the Glu community is going to be part of that journey, sharing in the creative process. I’m stoked because I’ve found a home for my efforts and plans including LivingVertical–and I have been able to do that without selling out or turning this site into an advertorial for the diabetes industry.
- I may not know a lot about research science, but I know a lot about living with diabetes–and that’s enough to make a difference .
Be on the lookout for more video releases from us–I’m working on a short timelapse reel and of course the Wind River Project and…more. If you want to support LivingVertical which has no monetary sponsors, buy a photo print for christmas. The photos are pretty great (sure, I’m biased) and they help defray the costs of operating this website. Nothing you read, hear or watch here is representative of or condoned by my employer, the T1D Exchange. It’s all my own opinion, love it or hate it.