One Year Later…

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It’s been a year, yo. A whole year.

On March 6, 2013, this blog roared into existence after an announcement of a potential cure for diabetes turned out to be a ploy for donations. (You might see it differently, but that’s what it looked like to me.)

I still have diabetes.

Want to know what happened after the trumpeted announcement? The Diabetes Research Institute has raised $4 million dollars. That’s what the last press release told the world. The BioHub is still vaporware, an idea that, while beautiful in design, is far away from being a reality.

What the BioHub has done for me has been anything but vaporware. It’s given me a perspective that I didn’t have before March 6, 2013. And a renewed sense of purpose.

We all want a cure, but what flavor… Vaccine? Transplantation? Artificial Pancreas? Some individuals and associations focus their funding, voices, and time for the “There must be a cure as soon as possible!!” and damn everything else. There are others (I’m raising my hand…) that focus upon living well with the disease. It’s not that we wouldn’t welcome a “cure”, but we also recognize that it’s still a long way off, so until then, the tech and the drugs and the support that keep us alive need to be as accurate and advanced as possible.

I see that sometimes these two views are at odds with each other. The parents of newly diagnosed children tend to be of the first camp and that’s perfectly fine. As I’ve mentioned before, the “cure in five years” has rung hollow six times over for me. It’s painful for me to watch the light slowly dim in their eyes as they come to realize that it’s just not that simple. Those like me who want to live well welcome them with open, comforting arms when they do step over. There’s plenty of room. And don’t think I don’t appreciate those who stick to the “CURE!” camp. I need them to keep rallying.

We all live with hope in our hearts. A cure for what ails us. No more external insulin. No fear of going to sleep and not waking up (or waking up with a gaggle of paramedics around you…). No kidney disease, retinopathy, heart disease, aches and pains and decision fatigue.

But in the meantime, I’m happy to be ThePerfectD, surrounded by the incredible Diabetes Online Community and the researchers and organizations who walk with me everyday. I’ve written approximately 166 blog posts (some were images, so I can’t say “write” for all of them…), attended conferences and summits, worked with other advocates to change the way the federal government looks at us, made amazing new friends, and have embarked on a few projects that will hopefully (crossing my fingers, toes, and any other body parts that I can cross) be an asset to the diabetes community at large.

Thank you for sticking with me for the past year. I’m a better person because of you. You inspiration. Your support. Your voice.

Thank you for letting me be ThePerfectD, especially when I am anything but perfect.

Thank you.

 

0 comments

  1. gaz

    Delighted to follow your fine writing christel its also my anniversary of four year’s with diabetes so happy birthday mine a g and t if your buying

  2. bennetdunlap

    Yay!
    Our community is better with you back and engaged.

    Like any (every) other parent of a child with diabetes I hope cures, plural, are found. I think the progress will, like all medical research be a mixture of hard work and many promising starts that become challenges. So I see a portfolio of efforts to find cures is most likely to find success for my two kids with type 1 and everyone else too. I also hope for significantly better tools to help them live with t1d in the decades cures will take.

    If it were a horse race I would try to bet on as much of the field as possible, not any one winner. To me, it is far less significant how any one lab is funded, than that many are. And that many efforts to get to better care are also supported. I would love a glucose responsive insulin, a variety of AP options in the market, better cgms, better sets, more accurate meters, better insurance coverage for all of that and support for the critical peer to peer processes that keeps everyone connected to diabetes sane, ok… a just a little sane.

    Part of being sane is trying to lift all with the power of the community, like you do. I worry about tribalism in our community that divides our ability to speak in a way that lifts all. That hurts when we speak to policy makers but maybe more significantl when we talk amongst ourselves. Tribalism is my perfect way to do diabetes vs your inferior way, shots vs pumps, pump vs patch, SGLT2 vs DPP4, cure vs care, cure vs cures, accepting stereotypes of one type vs another and more. These are a path of devision that only provides an illusion of elevation one by weighing down another. In total the net effect is to harm all.

    While your diabetes may vary, nobody asked for it, everyone should have access to increasingly better care that supports their individual walk with diabetes and the optimism of cures.

    Thanks for your voice of inclusion in the club nobody wants to be in.

    Love Ya / Meant It

  3. Katy

    I didn’t know this blog started in response to the ………..!!!!!!! (I’m pretty sure it was the announcement featuring an eleven-piece elipses with seven exclamation points you’re referring to—I can’t wait to………go back and read about it!!!!!!!)

  4. Scott E

    If, by “perfect”, you mean doing everything correctly, never faltering, never learning through experience, never displaying vulnerabilities which make you more approachable to others, never choosing a website name which is humorously similar to a very (allegedly) different site, never being able to relate to the mistakes of others, being a joint target of both envy and resentment, and obeying all the perfect-manners etiquette, then no. You’re not perfect.

    But if “perfect” means we are extremely thankful to have you just as you are, and wouldn’t want you any different, then yes. You are perfect. (Cue the Pink theme song….)

  5. Sara

    What Kerri said.

    Also, I am still kinda mad about the whole thing (because I am still waiting for an actual apology). Their idea may work but that was the poorest roll-out for a fundraising campaign that I have ever seen.

  6. Scott K. Johnson

    Whatever it took, we’re a better place with you here, and like ACTIVELY here, yo. None of that background, quietly kicking ass behind the scenes bullshit.

    You know you are amazing, right? I’m so glad you’re roaring. 🙂

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