Be Transparent

If you're like me then you are a problem solver by nature.  Hear a problem, find the answer.  But what do you do when you don’t know anything about the problem? 

You find someone that does...

What if the person with answer doesn’t know that there is a problem... or even that they are potentially the one with the answer?

Well, you can show them...

Somewhere on this planet there is a person that holds the cure to Arden’s disease.  Perhaps they are working on it right now or maybe they're in college working towards being a doctor.  It’s even possible that they haven’t been born yet. 

Consider this.  The person that one day discovers the cure for type I diabetes may never see this site or know Arden’s name.  But perhaps a friend of a friend of a friend sees the site or maybe your child giving themselves a bolus in a resturant. What if that's how they learn of type I, how they become interested in knowing more.

My plan for curing type I diabetes is simple.  Since I’m not a doctor or a scientist, I can only use what I know to help find a cure. My tools are the internet and total transparency. I try to show others what Arden’s disease is really like, no matter how uncomfortable sharing our lives may be. I believe that it’s Arden’s best chance to one day have a normal, healthy life.

Starting today I’m adding another focus to my plan by encouraging others like me to be transparent.  Transparency is the key, I’m convinced of that.  Those afflicted with type I “look” fine to the casual observer so we can’t expect people to be moved to advocacy without assistance because most don’t know the facts.  So we are going to educate them. Tell them about the seizures, about how you live in constant fear that your child is about have one.  Tell them type I doesn’t stop because it’s their birthday, three a.m., because they want to take a ballet class or because you're exhausted.  Tell them that every second that your child’s blood glucose is too high is a second stolen from the end of their life.  Try to make them understand the incredible, unrelenting pressure that this disease has created for you and your family, twenty-four hours a day, everyday, for the rest of your lives.  Don’t hide, test and give injections in public, let people see your insulin pump. Encourage them to ask questions, be transparent.  It’s not complaining, it’s education.  It’s problem solving.

I used the internet but there are many other ways to share.  Please find that thing you know about and use it to educate others.  Together we can find a cure. 

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The following are archived comments from this post. You can post new comments below.

Anonymous

I just wanted to let you know how inspired I've been by Arden, and how much I have learned by reading this. You have reached at least one more person who will be willing to help. I keep Arden in my prayers.

Monday, July 21, 2008 - 07:48 PM

Scott

Thank you!

Thursday, July 24, 2008 - 11:21 AM

Sarah Kelly

So very true.  I am married to a wonderful man with type 1 diabetes and never has he hid it.  He tests where he is, gives shots when he needs it, and (annoyingly) leaves a trail of test strips behind him.  Our children entered a world where d is normal in our family, so not until my two year old was diagnosed did I think twice.  When at the park and people stare, when at the Y and obese people say "oh I have diabetes, too,", when on a playdate and others ask me to not poke him in their living room....oh it's been a learning curve for me, and I don't change a thing.  My son, like my husband, will test where he needs to, will get insulin when he needs it...and I am sure one day he'll drive his housemates crazy with a trail of teststrips, too!

Sunday, May 23, 2010 - 06:46 PM

Scott

Sarah, That's what I'm talking about... I love it!

Monday, May 24, 2010 - 06:39 PM

Anonymous

it's hard though! I totally agree with your transparency theory, I have been type 1 since age 13 (37 now!) and back in the 80's, we just didn't test or inject in public! ok, we didn't have to as test meters were the size of housebricks and we only used quick acting insulin twice a day in measured doses but still, it can take some getting used to. I pump now, but test wherever I am and welcome questions even though I still blush ;-) your daughter does have an advantage (as hidden as it may seem!) at being diagnosed so young, as diabetes is shaping her life. Now that may suck, but it's factual and from your blog, she's doing stirling work!! My favourite picture is the one of her handling the syringe and the insulin vial with her tiny fingers. She has my admiration and deepest respect! it's hard work. She's a champ :-)

Monday, June 14, 2010 - 08:37 AM