This week has been an amalgam of complex emotions. My blood sugar has been “adjusting” to a new exercise regimen, I have some big plans (relatively speaking) in the works that I am thrilled about but can’t really disclose yet, and of course there was the “hopelash” discussion about the DRI’s Biohub announcement.
I have always sought to be honest and real in my posting, above all else–which I know is partly what interests people in reading my rambling monologues (for some odd reason). I also know that I have a tendency to occasionally speak from raw emotion and that such manifestations of honesty aren’t always as clear as they could be. I have spent a lot of time questioning my reaction to the handling of the Biohub announcement because I feel some of my ire in the moment overshadowed the full scope of my position on diabetes research.
I am not a curmudgeon on a witch hunt. I am a skeptic. I choose not to suspend my skepticism when the words “diabetes” and “cure” appear together in the same sentence. However; I do believe that research is important and that it has given us advancements that we (myself included) benefit from every day and so there is no desire on my part to see support for these efforts abandoned. My issue is with invoking the word “cure” into research pledge drives with seeming flippancy. That sort of messaging pushes my buttons–because a cure is the “low probability/high risk investment” of which I ranted in my previous blog.
The fact that research hasn’t yet given us a cure is not my beef. I know that these things take a long time and that we are constantly learning new things, not to mention getting research past the FDA represents a Gordian knot of red tape–and those are perfectly valid reasons for the rate of progression. When those facts are presented without “sugaring the pill”, that is research that I can get behind–not because of likelihood of success (however that is even defined!) but because I respect a realistic, honest approach in the face of grim odds.
My personal focus in my years with diabetes has never been research; cure-related or treatment-related, because that avenue of progress has not spoken to me, on a visceral level. That fact does not mean that I wish to dissuade others who have a different perspective or motivation in the world of diabetes from supporting research that passes their personal “sniff test”. It doesn’t mean that I consider research to be trivial or unimportant. It simply means that I feel moved in other directions that are less visible to the public and so I have focused the majority of my energies accordingly–and I make no apology for that.
I absolutely believe that while research is one important avenue of progress, it doesn’t (and shouldn’t) represent the whole map to improving life with diabetes. There are so many great things that I have gotten to witness and write about over the last year; programs that help people and change lives here and now–and people and organizations that deserve to be recognized right alongside research because of their impact. To be clear I am not nominating myself or Project365 for inclusion in that category. There are many others I have rubbed elbows with over this past year who motivate that preceding statement.
I have personally been denounced and reviled (sometimes in very colorful terms) for even trying to make my mark in that same arena by doing something that isn’t cure-research related. Seeing people hate you for things they can’t really understand, well it hurts, even if “they don’t matter”. So yeah, the whole cure terminology touches a nerve for me, but I have honestly tried (and I am constantly striving) to make sure that I don’t throw the baby out with the bathwater, and sometimes that objective is harder to meet than others!
I do want to see a complete picture of “getting involved in diabetes” presented to the world and I don’t want to crusade for anything other than people making their own, well informed choices and being positive about and active life with diabetes.