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A Bitter-Sweet Experience

This past Saturday, I was able to attend my first (yes, first) JDRF walk in Springfield, MO courtesy of the Ozark Chapter of the JDRF.   This is only the second walk in Springfield, Jessica Hickock was the event organizer and got the whole ball rolling in the first place by actually founding the Ozark Chapter.  Over the last two years, this event has raised $75,000 for the JDRF so kudo’s to Jessica and all the great volunteers who have made these events a such a great success.

Now onward to my bitter-sweet explanation

Sweet – I saw young diabetics and thier moms, dads, brothers, sisters, aunts, uncles, and friends coming together to not only raise funds, but to let those children know they are not alone in this life sentence we call Type 1 Diabetes.

Bitter – I saw young diabetics and thier moms, dads, brothers, sisters, aunts, uncles, and friends still having to come together to not only raise funds, but to let those children know they are not alone in this because T1 is still a life sentence.

One of the better moments was a lengthy conversation I had with Paul Zizmang, director of the JDRF Ozark Chapter.  I came away from that conversation with a different take on the JDRF than I started the day with.
 
It seems to me now that we are indeed fighting the same battle, just on different fronts. Maybe the disconnect occurs when we (as diabetics) keep seeing requests for more but it is so hard for the JDRF to offer quantifiable results for those efforts to us.
 
Perhaps it is our respective definitions of the word “quantifiable” that is the basis for the disconnect. 
 
From my perspective, to the JDRF, quantifiable may very well be defined as “producing results that can help us progress towards a cure.”  As we all know, it can take years and billions of dollars for a treatment to work it’s way from a clinical trial to getting final approval.

For me, as a diabetic, quantifiable is defined as “when can I put my hands on it?”  When can I take all the diabetes junk strewn around my house and life and reduce it to a smoldering pile of melted plastic and glass in a fire that would make the folks at the Burning Man festival jealous?
 
As a diabetic, I’ve been hearing that the cure is “just around the corner” since before the JDRF was even founded (by about 3 months, so just slightly before /wink). After a while, you tend to just filter out those things. The who “Boy who Cried Wolf” effect is strongly in play when I read the various announcements.
 
The JDRF’s frontline is fund raising, while my frontline is my daily care. On my right flank is the future, when will complications arise? While my left flank faces the daily stress and worry. Luckily, the DOC provides excellent reinforments on all three fronts.

I’m hoping that the JDRF has my rear flank covered and perhaps they do.

  • Echo, on my past comment. Great blog post, thanks for sharing it Scott! And hey – great job participating in the JDRF Walk… It’s never too late to get started, or in my case return!

  • Just as a piece of prose, I really like what you did with the “sweet” and “bitter” paragraphs. Great thoughts, as usual.

  • Thank you for sharing! I haven’t participated yet in a JDRF walk, because I worry that it will be very difficult for me. I was diagnosed in 2002 at the age of 17, and it hasn’t gotten much easier since those first weeks. Often I find myself feeling very sorry for myself- I feel cursed. Friends and family say to me, “at least you don’t have cancer/AIDS/etc”. Thanks but that doesn’t make me feel any better. I hate this disease with all of my being and am eternally optimistic about the future of this disease and its treatment! Someday! ~ @dinosgorawrr

  • I went to some walks from ’05-’08 (and at least one that I can recall about 10 years ago). I identified with your description of what was bitter and what was sweet, as it was a very moving experience to see all those people, both in a good way and in a sad way for me. One of the things that gets to me so much is that I hate to see all those people so invested in the idea that the cure is “right around the corner”. Of course, if that ends up actually being the case, by some miracle, that will be great, but I expect they’ll eventually awaken one day like so many of us before them, and realize that it’s time to readjust their expectations. It’s a hard lesson on top of so many other hard lessons that diabetes brings.

  • Bitter and sweet, yes.(You made me cry when I read those two sentences.)

  • Hi Megan, yes those comments don’t help one bit. I’ve taken to telling people that, mostly politely, that “yes those are terrible diseases. So is diabetes”The cancer remark is the one that gets me. Cancer is a sprint. And it sounds harsh, but there is a definate finish line. You win or you lose. End of storyDiabetes is a marathon that never ends. There is no clear finish line, no end zone to reach. I’ll never win, the best I can hope for is a draw, but chances are that I will lose.Stay optimistic!

  • Hi Leigh Ann,Yes, that is a hard lesson to learn and even harder to actually take to heart. The only thing we can do is do what needs to be done today. That way, when we get to that “corner”, we find ourselves as healthy as we can be

  • Leighann,I honestly didn’t know whether to cry or cheer

  • Scott K. Johnson

    A never-ending marathon. No wonder I’m so damn tired.

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