Dan Fleshler is a professional political writer and media strategist in New York City, who happens to have lived with type 1 diabetes since 1962 (!) He recently jumped into the DOC (Diabetes Online Community) with his own blog called The Insulin Chronicles. We're very pleased to welcome Dan to the 'Mine today, with some unique thoughts on "the lessons and mysteries" of this infuriating disease:

Dan Fleshler diabetes

 

A Guest Post by Dan Fleshler

I just signed away my pancreas, eyes, kidneys, heart, aorta, a bone and a flap of skin. Because I've had type 1 diabetes for more than 50 years, researchers at the Joslin Center for Diabetes' Medalist Program want to study what is inside of me after I die.  About two months ago, I spent a morning at their center in Brookline, Massachusetts, donating blood and letting them examine me. The fact that my body (MY body - !), which I characterized here as an "enemy agent") might actually do some good for others, and that scientists might actually learn positive lessons from it, feels like something just short of miraculous.

I am even open to the new possibility that there was a good reason other than sheer self-preservation for the 50,000+ insulin injections, for the incessant wrestling match with blood sugar, for the dozen times I've awakened after losing consciousness due to hypoglycemia, for... everything connected with My Shitty Condition. Maybe someday my blood, organs, skin and bone will help a groggy grad student discover something amazing — or at least useful.

Innovation 2015

Also new: I now know who might get help from whatever insights my body provides.  Some people with chronic diseases naturally gravitate towards those with the same conditions. Not me.  I've felt part of other communities — progressive Jews working for Israeli-Palestinian peace, everyone who is furious at Ted Cruz, Red Sox fans — but until recently had little to do with other people with diabetes (PWDs).  It's not that I ran away from them, or lacked admiration for important organizations like Joslin or the JDRF;  it's just that my limited free time and energy were devoted to other causes and people.

But during the last six months or so, I've been gravitating towards a vibrant online community of PWDs, aka, "the DOC."  Much has been written about the  phenomenon of people with chronic diseases seeking each other out for advice on social media.  A survey by the PEW Research Center shows that "many people with serious health concerns... are seriously social" and those with chronic diseases are more likely than non-chrons to gather and share information online.  But what I've experienced is something more than a platform for swapping advice and research tidbits, or for making new friends.

When signing Joslin's Informed Consent and Authorization form and when donating blood, I thought of all the PWDs I've encountered on the web, and felt a distinctly physical connection to them.  There is a sense in which we are all linked, not only because we experience the same daunting challenge of balancing food, insulin and exercise; no, there is more to it: we experience the same singular sensations.  The same wooziness and crankiness because of low blood sugars. The same nausea and bloated lethargy during high blood sugars.  The same fear of complications.  The same semi-panic when we stupidly forget to pack the diabetic supplies we need for overnight trips. The same frustration at the utter impossibility of figuring out how much insulin we need to cover restaurant sushi.  The same anger at the same insurance companies.

The result is a community of bodies and psyches. Our very cells and neurotransmitters and stress hormones somehow seemed linked together with digital connections, as if they are part of the same shared, often infuriating Body.  Am I the only person in the universe who feels this way? Do people who go online to share notes about rheumatoid arthritis, or asthma, or Crohn's disease have the same sensation? Am I nuts?  Who knows?  But I do know some good reasons to donate my blood, organs, bone and skin. {Editor's Note: other chronics certainly do! see here, here and here}

A mother on the PEP (Parents Empowering Parents) Squad Facebook page wrote that she was worried about where to stick lancets in her diabetic child's tiny fingers. I signed that Joslin donor form for her and her kid. And for all the stressed out, utterly bewildered newbies asking for basic advice and reassurance on TuDiabetes, and in the comments on blogs like DiabetesMine and ASweetLife. And for the PWDs and their parents who invariably cheer each other up on the weekly, sometimes whacky Tweet chat run by Diabetes Social Media Advocacy (#DSMA).

It is hard to find many people openly sharing fears online about losing their sight or their legs, or collapsing from heart failure, or coping with failed kidneys.  But clearly those fears abound among PWDs. I signed the form for all of them, too.

So thanks, Joslin, for the opportunity, during this year's season of giving, to give something — and for the utterly unexpected opportunity to mean something.  And thanks, DOC, for constantly reminding me why I took advantage of it.

 

Thank you, Dan! That's pretty much all there is left to say...

 

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This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community. The content is not medically reviewed and doesn't adhere to Healthline's editorial guidelines. For more information about Healthline's partnership with Diabetes Mine, please click here.