Off and Running (not cycling)

I’m currently out of the blogging and twitter loop but 2 quick items:

Sanofi, JDRF, Glucose Responsive Insulin.  Yes, please and let’s keep things moving forward!

I should have posted this long before now but JDRF New England is holding their TypeOneNation Summit tomorrow in Boston.  You can find the registration info here and the programming info here.  They are expecting 675 people.  How exciting!  I will also be speaking along with some incredibly amazing people. (675. so. many).

As I’ve written before, JDRF Type One Nation Summits are an incredible opportunity to learn more about advances in T1D, connect, and meet some remarkable people.  There is programming for everyone… kids, tweens/teens, adults with T1D, parents of T1Ds, and spouses/significant others.

My presentation is: Closing the Loop with Sneakers and Spokes: My T1D and JDRF Story.

This is one of my slides.

If nothing else, I bring the pizzazz (and enthusiasm).


See ya soon Boston!

“I don’t want to get to the end of my life and find that I just lived the length of it. I want to have lived the width of it as well.”

—Diane Ackerman
American Writer


“You’re here awfully late.”

I heard a voice behind me as I locked the office door behind me.

Wednesday was a long day and I was on a call that took much longer than expected.  I looked over my shoulder to see the man who worked across the hall walking to his door.

We made small talk, I didn’t even remember his name (I actually don’t think I ever knew his name) and then he told me how he’d seen me on Fox news the other night.  He thought I did a good job, so I explained how I looked tired and the bags under my eyes were bigger than my purse.  Self depreciating humor, my specialty.  He then said how he had no idea I had diabetes.  Yes, I do indeed.  He told me he has “sympathy” for me and then corrected himself and said “empathy” and then explained he didn’t quite know the word (some sort of -pathy I assume) but again, he had no idea I had diabetes and that it’s great I have this new device.  I explained how I don’t actually have the Artificial Pancreas I tested in the story but how it’s promising technology and how motivated I am that it’s on the horizon.  That I’m thrilled to see the technology getting mainstream press as there will be hurdles to bring it to market and people need to help push this technology forward.  I started to leave and then he told me how he knew someone with diabetes.  Knew, as in past tense. I immediately “knew” there was zero chance that this person he spoke of was miraculously cured, but instead, they were deceased. Not my, nor any other person with T1D’s, first time at this conversational rodeo.

He pointed at his lower leg as he explained how his diabetic former classmate had his leg amputated and then pointed at the other leg, then he pointed to the top of his thigh as he explained how this fellow apparently had both legs amputated at 2 different spots. I possibly mumbled something about how I was sorry to hear that and how important it is to help and advocacy.  He told me how his classmate smoked and how it was a lifestyle thing in the South.  Hmmmm.  I let that go.  I wanted to leave.  He then added that his classmate had a GoFundMe page because he needed a special cart at one point and how they had all contributed to it.

The conservation wound down, I left and walked a block and a half to the subway.  I thought about diabetes and 37 years of these moments and all the people I know with diabetes and how we all live with this work called diabetes.  We keep trying and all I kept seeing in my mind was this man, who’s name I don’t know, in his bow tie telling me about leg amputations as though that’s a perfectly normal thing to tell someone with the very same condition because they “seem” to be doing so well.  Like it was gossip.  Well I knew  a man…  The lump was in my throat as I started down the steps of the subway and the tears didn’t start until I was standing on the platform, waiting for the train.

I text a friend and told him to keep riding bikes and training people.  I happened to have therapy that night (not for my shoulder but for my brain) and my outline to talk work, personal life, family was pushed aside because I needed to talk about how I felt as I left the office.  I cried/talked as I relayed the story.

The next morning, I was surprised to still be upset.  Hours later, I realized I was upset with myself.  I complained to three friends already, I talked-it-out, and it was time to let it go, and that was the problem.  TIME to let it go?  I’m sure there will be people who disagree with me, but letting it go suddenly felt like saying it was all ok.  The 18 year old version of me who barely talked about T1D nagged at me.  Make this right.  And then I over analyzed the entire thing and then I was so damn busy I never got across the hallway.

Today I went across the hall (I did find out bow-tie’s name) and asked if he had a few minutes to chat.  I explained that the other night, I think I did a disservice to myself and people with diabetes.  His eyes got big.  I explained how I knew he didn’t mean harm when he told me about his high school classmate who’d passed away or about his numerous amputations but that it was upsetting to me.  That the story he told me is part of the worry I live with everyday and that I think, and hope, he has a better story to tell now.  He apologized for upsetting me and I continued that the next time he meets someone who’s diabetic, he can tell them a better story.  He can tell them about this woman who works across the hall and how she’s been in clinical trials for technology that potentially could reduce some of the stress of diabetes.  How that woman was on TV to share information about this technology.  That she is an advocate and works like crazy to spread awareness and raise funding and that she is just one of many people working to make this one part of the world a better place.  And then I added how truly sorry I am about his classmate.  He stood up and he hugged me.  Yet again, I did not see that coming.  He talked some more about people in the South and I left it at that.