October 22, 2008

Hype or Hope? Neither, Thanks

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Vogue, December 1990

Vogue, December 1990

As a teenager, I wasted much time flipping through Seventeen and Glamour, and eventually I graduated to Cosmo and Vogue. I would start on the first page, feeling OK, but by the time I got to the last page, I felt pretty disgusted with myself. I wasn’t thin enough or tall enough or muscular enough. My boobs were too small, my butt was too flat, my skin was too flawed, and my face was too round. It’s not like I was ever going to be able to afford those $500 shoes or that $1000 sweater, so why was I reading this $4 magazine, because frankly, it made me feel like shit. I stopped buying those magazines about ten years ago. Good riddance too.

I know I was told when I was very young that diabetes would be cured within five years. Every year as a child when I blew out the candles on my birthday cake, I wished for a cure. Every year. I did that until maybe sometime in my teens or possibly even into my 20’s. When I was closing in on my 5th D-anniversary at age 10, I remember being in the car with my mom, and telling her that I would be cured really soon because it had been almost five years. I don’t recall that my mom had much of a response, and who can blame her? What do you say to your diabetic 10-year old who took that “cure in 5 years” message to heart?

As a kid, being cured seemed as glamorously feasible as being a super model. I could have magically restored beta-cells, and strut around in 4-inch Italian leather heels and a slinky Kashmir wool dress all in one fell swoop. As disillusioned as I became that my ungraceful, average body wasn’t going to support my career aspirations, I became just as disillusioned that this supposed cure was nothing more than fairy tale fodder for a girl, humiliated by having a disease.

Grease on Vinyl

Grease on Vinyl

Just like I used to page through those magazines, longing to have things that just weren’t meant to be mine, I used to believe I’d be cured. I was told by doctors no less that we were only a few years away, and I blindly believed them. I climbed on that rollercoaster, thinking it was a ride with a glorious ending, and I rode, and rode, and rode. News of this or that development sent me soaring, then the realization that it never materialized sent me hurtling back toward ground again. I had been told I’d only have to ride for five, maybe ten years, but ten years became fifteen, and then twenty, and so forth. In time I realized that the glorious ending to that ride was as fictional as those Photoshopped girls on the glossy pages staring back at me at the supermarket check-out line. The ups and downs made me sick – not to my stomach, but heartsick – and I had to ask myself if that’s how I wanted to spend my life, looking to the latest medical news to finally deliver on a promise made when Jimmy Carter was president and I played my favorite record, Grease, on a pink turntable while I sang to my Barbies.

To this day, it crushes me to hear diabetic children being told there will be a cure in five to ten years. I know adults are trying to instill hope in those kids, but I guess no one stops to think that such a statement could do more harm than good if it never pans out. Add all the qualifiers you want, “might”, “hopefully”, “probably”, ”maybe”, but a kid filters that out and just hears that they’ll be cured. I’m still bitter that that was my experience, and it makes me angry to see kids and families being dragged onto that same rollercoaster I rode for so long, believing in that same glorious ending that I was expecting back in 1983.

Rollercoaster

Rollercoaster

We all do the things we have to do to get through each day with diabetes, and much of that comes down to self-talk and belief. In order for me to continue, I had to let go of the belief that I’ll be cured because it built me up and tore me down until I was too exhausted to care about my ‘betes anymore. If I get to the point where I don’t care, it won’t matter if there’s a cure in five years because I’ll be too dead to experience it. It’s a self-preservation tactic at this point. Logically, I don’t deny that there could conceivably be a cure in five years, but for the sake of living well with diabetes, I have to invest my hope in being well and being happy with this disease, not being cured. Being raked over the coals of disappointment even one more time is more than I can stand to consider. I need to feel good about who I am and what I have, a diabetic with type 1 diabetes, if I’m going to manage this disease everyday for the next five years or for the rest of my life, no matter how simultaneously unpredictable and monotonous it is.

So to the question, hype or hope, that’s been posed by Amy, that Scott has weighed in on, and Allison has also thrown out for reflection, all in anticipation of DRI’s Diabetes 2.0 this Saturday in NYC, I’ll take neither. The longer I live with this disease, I just don’t care to read about any of it. It has no bearing on my life and doesn’t change what I need to do to take care of it. Instead it stands to destroy the positive attitude and perseverance that I’ve almost impossibly created from bitterness, hate and resentment. Living well and being happy with diabetes is a delicate construct that is tested everyday with fluctuating BG’s, imposing tasks, and endless responsibility. I’m finding greater success since my cure subscription met the same fate as my subscription to the fashion magazines. Better to appreciate the life I’m living than pine for the one I can’t have.

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7 Responses to “Hype or Hope? Neither, Thanks”

  1. Kristin says:

    I can relate to your feelings on this one. Whenever someone starts talking about possible cures, I get a strange feeling. I can’t quite describe. Rationally, I want a cure– so that people don’t need to face it anymore. And I find new research ideas interesting (particularly if they help us know what’s going on in our bodies). I don’t get too excited by any headlines and more often than not they leave me frustrated. Although I’ve only known diabetes for 5 years, I stopped searching for a cure and attempting to understand why I have diabetes a while ago…

    I get why other people are excited, fighting for a cure, fundraising for research for that cure, but talk about “a cure” gives me strange feelings– that I don’t know exactly what to do with!

    And I love the closing line of this post. A good reminder :)

  2. We have such a limited knowledge of biological functions that I support *all* research no matter who is funding it. I don’t think anyone has a clear enough picture of what will work versus what won’t so I think people who say “This is *it*” seems a little naive. I try to push out all the headlines and hyperboles because I work in the media and I know why they do what they do – to sell newspapers and magazines and get their research talked about so people want to fund it. It’s PR at it’s worst, I’m afraid.

  3. Scott says:

    Since the day I began my blog back in 2005, I have always tried to rely not on the news, but what the scientific and business evidence is, and as you note, most of the news is just a prescription for disappointment. In particular, I usually dismiss anything that talks about improving metabolic “control” (surely a misnomer if ever there was one) because the medical profession has remained so fixated on that at the expense of other possibilities for most of the past 30 years that virtually every idea that falls outside of that box is promptly dismissed by the so-called “experts” in the field.

    On the other hand, I also think that people with diabetes share some of the blame. In the words of a close friend:

    “Via radio, television and print, our neighbors, coworkers, friends, and relatives learned that diabetes is controllable. The theme reinforces the belief that diabetic disabilities and their associated economic costs are caused by the person with diabetes, not by the disease known as diabetes. The public perception of diabetes is influenced by our personal testimonies, yet we have portrayed (or we allow it to be portrayed) a disease that is no more than a minor inconvenience! In order for policy makers, philanthropists, employers, and the public to feel compelled to cure diabetes they need to understand that diabetes is costly for society and that those costs are rising, pervasive and the incidence is accelerating, soul-destroying and there is still no cure and, above all, that diabetes is curable! Yet by showing the world only the happy face (how many advertisements for meters ever show a reading which is “out of range”?), and not the tragic disease beneath, we are endorsing the prevailing philosophy of tolerating, rather than curing, diabetes.”

  4. Lyrehca says:

    Rock on, Sister. Great post.

  5. RonaldLI says:

    Спасибо за текст! Очень понравилось

  6. ErvinTW says:

    Thanks! Nice post.

  7. Deribiffhiche says:

    Спасибо за пост! Добавил блог в RSS-ридер, теперь читать буду регулярно..

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