Thursday, February 17, 2011

Keeping The Faith For a Cure

Lately, I've been asking myself a key question: "What has the JDRF done for me?"

Like really, truly through all the years as I heard that a cure is "right around the corner," while continuosly raising money for that cure, yet not seeing it around every corner I turned in my life? What have I gotten from the organization so devoted to researching that so-called cure and what do I think of that mission?

Reflecting on this question seriously in recent weeks, some irony has come to mind because of the answer:

In a weird Twighlight Zone sort of way, the JDRF has given me hope.

Maybe not the kind of hope that comes from knowing each dollar I raise for a walk will specifically fund a cure at some specific point in the future. Rather, the hope that a lot of people are looking for a cure with all the passion in their hearts.

I'm not a scientist, so I don't know what might be the best road. But I know there's the JDRF doing what it can,  just as many other scientists and researchers and organizations are also trying hard to find one.

That gives me hope. Even if I'm jaded and, after 26 years, don't believe I'll see one in my lifetime. Just as my mom, diagnosed as a kid 53 years ago, doesn't believe she'll see one while she's alive.

Maybe it's just faith.

There's some intangible hope in the fact that cure research is ongoing and that someday that passion will lead to a cure, by someone. The JDRF has supplied me with that hope, even during the times I didn't see anything from them and felt more like a marketing tool or exploited face or another donation mark on the charity's register.

I'm not the parent of a CWD, so I can't possibly imagine what it's like to look into the face of your child and try to tell them a cure will come - when you doubt the truth of that statement. Or their faces when they cry for a cure and you can't take diabetes away or say when a cure might be found.

But I was that kid. My memory is that my parents always basically told me: "The JDRF is trying, but they just don't know when. Other scientists are trying, but they don't know either. We may or may not get a cure, but regardless we'll do our best to make sure you can have a healthy and successful life."

Recently, I asked my mom about how she looked at the then-JDF in those years following my diagnosis and how that impacted their "cure" and "hope" philosophies when raising me to Live with Diabetes.

She said, "I’m certainly a product of many medical professionals following the 'cure in five years' theory. Because of hearing this for virtually my whole life that I remembered, we never hyped the cure to you in any way. In fact, I quickly shut down any medical professional you came in contact with that might start talking about 'The Cure.' We did believe in the philosophy that was held by (your initial Children's Diabetes Care Team) of working within the known technologies to try and get the best results possible. My mother, from when the JDF was a new organization, believed in it more than the ADA - mainly because they contributed more of every dollar to the cause as opposed to paying workers and spending the money on offices and things. So, she volunteered her time in making phone calls and doing office work for them. This was the same principal that your father and I believed in and why we chose to volunteer our time to them once you were diagnosed."

So that's how I've grown up, and what I think now. It's about the here-and-now as a main focus, without losing that hope of a cure someday - both play into each other.

I'm sure there are many research ideas and various funding issues to delve into, but I'm not qualified to know about that. When it comes to what the JDRF has done for me: they're trying the best they can. I think as a layperson, and as someone who they are doing this all for, that provides me comfort. Regardless of whether I understand all the decision-making and annual report confusion or not... I'll leave the rest to people much smarter than me.

As Bon Jovi has sung, I'm just trying to "Keep The Faith."

4 comments:

Penny said...

Michael,
Thank you for an honest post and especially the reflection from your mom as a parent to a child with diabetes. I like to hear all perspectives. I don't tell my gal G that there will be a cure, I just don't. I tell her about technology, progress, research, all in the hopes that her life with D will be simpler, easier to manage, less worrisome, but a cure, I honestly don't think it will happen in my lifetime or hers. So while I keep the faith that research teams are working very hard to make D more manageable, a cure, no, people have been hearing that for 20-30-40 years now. Enough is enough. Faith - YES, I'm in. All my eggs in one basket - the CURE basket - uh, no thanks.

Meri said...

Great post Michael. I say the same things to my boys that your mother told you. It gives me hope that I am saying the right things to them. As parents we always want to say the right thing. The healthy thing. We want them to know that people are working hard day and night on their behalf. We want them to have faith in a better future...with or without a cure.

jpnairn said...

I agree with you on all points. If you would really like to know what the JDRF has done, one thing you can do is go to this page:
http://onlineapps.jdfcure.org/AbstractSearchResult.cfm
Leave all the search fields set to "All" and click the search button.
You'll get a picture of what the JDRF has been doing.

Anonymous said...

I think of the American Diabetes Association as hope for my daughter today...JDRF is hope for the future. ADA advocates and makes real change for people being discriminated against in work or schools, and provides camp for kids among other things. These are more tangible to me right now than some cure 20 years off, but I do want that cure...I wish they would consider merging and have one diabetes organization altogether to give money.