I have been reading a few of the articles and blog posts reacting to and discussing the announcement this week from the DRI (Diabetes Research Institute) that they had a BIG announcement. Leighanne Calentine wrote a great post summarizing the nuts and bolts of the hope-lash that came from realizing that said “BIG” announcement was just another great idea that is still “5-10 years” from becoming realized as an actual cure to diabetes–oh and it was also a call to action for donors to support ongoing research.
I have long held my tongue regarding all of the “cure” based language used to reach people affected by diabetes. When I lay in the hospital bed at 16, three thousand miles away from my parents (I was attending school in Alaska, they were on the east coast of the US) and the nurse tried to “soften” the blow of my fresh diagnosis with the assurance that they were 5-10 years from a cure…I held my tongue, but I thought to myself ‘No way am I going to wait and see if they can actually make that happen’.
I racked my then adolescent brain trying to think of recent instances where “they” had cured any illness. I came up empty. Fourteen years and change later, I rack my adult brain and I come up with the same answer. I see links always popping up on my facebook feed about this cure or that cure idea and it’s clear that we have no shortage of concepts that could someday lead to a cure.
In the meantime, everyone is being asked to pay it forward to help make these expensive years of research tick past–so that in an ideal situation they could pay again to receive what would undoubtedly be a costly cure procedure. Is that sort of business model really ok with everyone? Is this the point at which people finally say “hey wait a minute…”
If I had taken the contributions of friends and families when I was climbing for Project365 and I failed to actually get on the road and climb, while subsisting on everyone else’s dime and didn’t follow through and what the funding requests were given for–I wouldn’t have been able to sleep at night. My facebook wall would have been blowing up with outrage–and rightly so. Even now that the project is complete I am spending 12-14 hours a day trying to make the film that I set out to–the film that I asked the community to help me make. I am accountable.
Why is it that we wouldn’t hold these massive research conglomerates to the same high standard? Why do people drink the cure Kool-Aid so fervently? Is it truly denial or am I missing something? Since I was diagnosed I never felt entitled to a cure–and I never expected one. I have never been disappointed. I understand that parents hate to see their child struggle. I don’t have kids so I don’t know what that is like. I do know what I have been able to become is only as a result of the struggle that I had to embrace and I wouldn’t change that if I could.
So to get down to the pith of this issue–I am not looking for a chance to rain down abuse on the medical research community. I have never supported medical research with my dollars because it is a low probability/high risk investment. It always has been and it always will. That fact in and of itself doesn’t make it a bad investment or a bad practice. However that fact ought to be shared more honestly so that people know what they are getting. Personally I have sought to provide a “product” with the empowerment message that might not sound as tasty as a straight across cure–but I think that it is important to be honest about what you are doing and the likelihood of your ability to deliver.
The fact that supporting cure research is perceived as the “go-to” method of getting “involved” in making a difference in diabetes is tantamount to justifying a trip to Vegas to bank your life savings on one spin on the Roulette as an investment opportunity to secure a responsible and safe retirement. Some people can see the risk and accept it. They choose to invest in despite the minimal chance of payoff. That’s fine. But please, don’t try to sell me on a game of Black Jack with the logic that it’s my best shot to get pay for my (theoretical) kid to go to college someday.
I started Livingvertical with the mantra: why wait for a cure?
Today that still rings true. Hope is in today, in this moment. In accepting and embracing challenge because we can. That may be the low risk investment account which sounds a lot less sexy than winning big in the casino. As a climber, I have to say that I relish the irony of advocating for a “lower risk approach” which involves climbing and accepting the challenges of the vertical world–but I truly feel very sad for the scores of people who are now feeling let down as a result of another research fundraising drive that still puts a cure years down the road. Again.