Just Call Me “Negative Nancy”

Tuesday, March 5th, 2013 | Posted under Diabetes

tumblr_md9pkd1MTW1rzx2dao1_400_largeI wasn’t planning on writing a response to the latest news from the Diabetes Research Institute. Plenty of my peers have written their two cents and for the most part, I agree with them. But then this afternoon I saw a comment to a book review I had written for a book by my CDE, Gary Scheiner, which was actually posted yesterday, the day before the DRI’s big announcement. At the very beginning of the post, I wrote, “Barring a miracle, there probably won’t be a cure within the next 10 years. So we know that managing our diabetes well is the only option if we want to live a long and healthy life.”

Honestly, I was just trying to write a catchy intro to a book review, but apparently it sparked something in a woman who then wrote at the end of her comment: “And Allison, try not to be the Negative Nancy right off the bat in the first sentence. All of us supporting fund raising and research are optimistic large strides or a cure WILL be soon!”

I was left feeling a mix of emotions, including irritation, frustration, and agreement! I have been raised money and donated my own money to the Juvenile Diabetes Research Foundation, the Diabetes Research Foundation, and even the American Diabetes Association for the last 19 years. Please do not question my commitment to Sparkle Motion — er, the cure.

That being said, I don’t necessarily think the cure is coming ’round the bend anytime soon. Hell, I’m not even sure we know where the bend actually is. A little more than two years ago, I wrote that I had lost my faith in a cure. The premise of the article was actually about the new focus of JDRF on new technology, and how an organization that was supposedly devoted to finding a cure was betraying their thousands of supporters by doing so. I — and many other — totally disagreed with this point of view, and I explained why I felt that way.

This time things are a little different. The DRI (for those unaware or not involved in the diabetes community) announced today that they are planning to develop a “BioHub,” which is essentially a little pocket to hold and protect islet cells from being destroyed. Islet cells are the cells that make insulin, which have been killed off by the immune system in every type 1 PWD. So in theory this is big news. The problem is that it was hyped by the DRI prior to the announcement that this is “what we’ve been waiting for.” And it isn’t, really. Because what we’re waiting for is the bloody cure. In fact, some people I’ve talked to are suggesting that this might be a marketing ploy just to fundraise. Plus other people have already been working on similar ideas, so this isn’t even ground-breaking. This really isn’t any different then every other announcement that has ever been made about new cure research projects. Researchers have found more than 400 ways to cure a mouse. None of them have worked in humans. I’ll reserve my excitement for the cure that is FDA-approved, and not a minute sooner.

So when someone comes up and says “Stop being such a Negative Nancy” I have to pause. Because I’m not being a Negative Nancy. I’m being a Realistic Rebecca. A Cautious Caroline. A Living-in-the-Present Lindsey. (I could go on all day.)

At the end of the day, do I think there will be a cure? Yes. When? I don’t know. My crystal ball is on back order. And they don’t know either, which is what really rankles my ire. They say something is coming in five to ten years, but can I let you in on a little secret? They don’t have a fucking clue when the cure is coming. So quit asking.

It’s okay to hope for a cure. It’s okay to work for a cure. It’s even okay to dream about what you will do when you don’t have diabetes (my plan since I was 15 years old is to eat an entire Mud Pie at Red Robins by myself! And then vomit.). But for God’s sakes, don’t plan your life around the cure. I think most people get this. I really do. I think most of my readers are very smart and they understand not to plan life around the cure. Because I remember when I was a little girl and my doctor told me that he was really sure that it was coming in the next five to ten years. And I remember giving myself a little wiggleroom and I said, “Well, as long as I have a cure before I have kids…”

I’m twenty-seven years old and married. There’s a pretty good chance even my wiggle room isn’t going to cut it.

I wish we could be certain about when the cure is coming. I wish we knew how it was going to happen so we knew what to fund. But we don’t. And I’m not going to live my life like we do. Hell, we’ve been trying to get an insulin pump approved in the United States for the last three years. If that doesn’t give you a picture about how long it will take to get a cure approved, I don’t know what will.

I would much rather say there won’t be a cure in ten years and be wrong, than to say there will be a cure in ten years and be wrong. If that makes me a Negative Nancy, then so be it. But hopefully you’ll understand a little bit better about why I am.


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Comments on this post

  1. Tom Beatson says:

    I have come to the conclusion that the ones who kind of got carried away in anticipation of the DRI announcement are parents, not PWD. Those of us who take our insulin every day realize that we will take our insulin tomorrow, and the day after, until the FDA approves something better, and we have learned how to contain our anticipation. It looks like some DRI officers were trying to build the anticipation.

    1. Betty Jackson says:

      Well finally someone said it, thanks Allison. I’ve been a Negative Nancy most of my life. Since I’m older then you I felt if I said it I would be thought of as a old woman who had lost hope. I’ve never lived my life thinking there would be a cure. Having lived for over 50 years with this disease I felt that there would be no cure. At least you’re still hopeful, which is good. I’ve thought about all the diseases that have been cured and can’t seem to think of any. Polio vaccine was invented in my lifetime but it didn’t cure those with Polio, it just prevented others from getting polio. You see where I’m coming from if there are any diseases that have been cured I would appreciated hearing about them…anyway I appreciate you telling it like it is no matter what names people call you…I’m also one too.

      1. Scott E says:

        I agree with the above comment 100%. If you look at the comments on Tom K’s blog, most of the names are unfamiliar to the DOC – they are parents believing that a cure is the only hope for their kids’ futures. If you look at the comments to the JDCA’s Facebook page, you’ll find the same thing. They, quite frankly, don’t have the confidence that they can live happily with diabetes. They are not like you or me who have learned to live with it and accept it.

        I don’t need reassurance that diabetes will be gone in five years – or ten years. I’ve managed it for thirty, and if I need to work towards managing it for thirty more, I will. Waiting for a cure is like waiting on a New York street-corner for a crosstown bus that may never come. I’ll take charge and walk; it’s a fun, scenic adventure, I know how to do it, and I know I’ll get to where I’m going. If I wait, I may just grow bitter and despondent as the minutes, hours, days, and years pass without a bus in sight.

        1. Allison says:

          I think I should clarify that this isn’t necessarily directed to PWDs. It’s directed to anyone who thinks that the way I think makes me a “negative Nancy.” I don’t know if this woman is a PWD or a parent, so I’m addressing everyone while also addressing the DRI’s announcement. This is not just a DRI-response, this is an “everybody who is waiting for the cure” response.

          1. StephenS says:

            Allison, I support your viewpoint 100 percent. Sure, I’m hoping for a cure, but I’m not going to stop living my life to the fullest in the meantime. Thanks for being a “Sensible Susan”.

            1. Don’t Believe the Hype says:

              […] With Faith and Grace Just Call Me “Negative Nancy” […]

              1. katy says:

                Scott E. has the outlook I’m working on establishing in myself, and hope to cultivate in my child: “the confidence that they can live happily with diabetes.”

                I’m so grateful for all of the Cautious Carolines out there!

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