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Simonpalooza-Big Apple Edition

Do You Know Simon?

If not, that’s a damn shame. Allow me to introduce him.

Simon is a thirty-something Aussie with a penchant for song lyrics and long walks along the coast. He was diagnosed with diabetes 7 years ago, after which he went through a long, difficult period of misdiagnosis, apathy, complications, depression, alienation, and….well, crap. Like, lying-in-the-hospital-at-death’s-door crap.

Then, God picked him up and put him more in death’s front yard territory.

And then, Simon found the diabetes online community.

One forum, then a d-blog, then another. Then Twitter, where he found DSMA, our Wednesday night Twitter chats in which people weigh in on various diabetes issues and share lots of absurd jokes. He started connecting with various far-flung diabetics, people who were healthy and happy and living every day with this obnoxious disease. And hell, even if they weren’t healthy or happy– they shared it freely.

Simon and I became friends over time, sharing a love for good gospel music, 80′s era U2, and goofy humor. It was plain to see that he befriended a lot of people in the diabetes online community (also acronymed as “the DOC”) with his warmth, humility, and heartfelt posts on his Diabetes Daily blog. Even better, Simon started getting better. Inspired by the DOC and galvanized in his self-management, he took control of his health and started achieving flawless A1Cs.

So you can imagine how thrilling it was for us when Simon decided to make a trip to the Northern Hemisphere and meet all these fabulous d-friends in person.

Death’s door no more, y’all. Unless it was from sleep deprivation. Having regained his health and dedication to managing his diabetes, Simon found a job…..and promptly started working double shifts like crazy to pay for this little intercontinental jaunt. Sixty, eighty, ninety hour weeks. Five days off in six months. I’d open Twitter and stare in stupefaction at my computer screen as Simon merrily tweeted, “3 AM…halfway through a 28-hour shift and I’m feeling great!”

The moment finally arrived in October.  After touching down in LA, Simon hit up Kansas City and met with no less than 25 PWDs and their loved ones. The experience was a suckerpunch of emotions and love, as many who were there have written– you can find a list of blog posts on C’s Life With D

After Kansas City, Simon came to NYC and spent a week here. Lucky duck that I am, I got to hang out with him almost every day. We talked about love, music, God, advocacy, motivation, marriage, work, sickness, and health. We also had in-depth discussions of awkward pickup lines and Vegemite. We heard accordion players in Little Italy and street preachers on Coney Island. We randomly burst into song on the sidewalk. I laughed so hard that my sides hurt and I woke up one morning with a splitting headache from smiling all day. I got to expose him to the wonderful diversities of this city by taking him for soup dumplings in Chinatown and Balkan brass music in Brooklyn. (His opinion of both was….questionable.) And then, in a fantastic culmination, fifteen of us East Coasters gathered at a bowling alley that Saturday to hang out, eat cupcakes, bowl a lot of gutter balls, and, I don’t know….bask in Simon’s down-under glow.

Obviously, it was all great fun. But there was something to it beyond that. It was like there really was a glow during the entirety of Simon’s stay. Part of that is just because the guy is incredibly affable. Part of it is a natural outcome of D-meetups. But it occurred to me, as we were sitting around at the bowling alley noshing on special-edition Simonpalooza cupcakes (thanks to Tina) and shooting the breeze…..that this gathering was all about love. Usually diabetes meetups occur because of a larger event: World Diabetes Day, the rally for the UN Summit on Non-Communicable Diseases, even dinner after an ACT1 support group. But that day was the first time for me that we were gathered simply to share the love and power of community. To meet new friends and greet old ones again. To talk for hours about everything besides diabetes, but to not bat an eye when a CGM starts alarming or somebody needs glucose tabs. And an opportunity for Simon to share with all of us his profound gratitude for being, in his own words, his “closest allies through a period of near blindness and extreme disability, nurs[ing] me through erratic and unpredictable blood sugars….”

“I consider some of my ‘online’ friends closer than family, for without their support and understanding of the diabetic journey I shudder to think where things might have ended in my spiral into depression and isolation.”

No, Simon, I’d say you’re pretty far from isolated now.

The NYC Gang at the Bowling Alley

Tricia, David and I recorded a video blog (or vlog) the night after Simon left to return to Oz. The two of them shared their thoughts on the experience, and I shared…well, my thoughts, but also a song. Community exists for us to support each other. In the same way that many of us helped Simon take back his life from death’s door to death’s neighboring state, he helped us by bringing so many people together. We’re all in this together. You might say (to borrow some words from Bono) we get to carry each other. Or, to take from Bill Withers, we get to lean on each other.

To Simon, if you’re reading this: thank you for being the brilliant, amazing guy you are. You gush on and on about what your trip meant to you, but I rarely could express what it meant to ME– that, for me too, your week in NYC ranked among the most awesome in my life. I miss you like someone cut off my right thumb the day you left. I can’t wait until we get to see each other again….Tim Tams or not!

To everyone else: I hope you like my singing. And my twitchy gesticulating. Here’s the link to “Lean on Me, Simonpalooza Style”

PS. I mean it when I said that I was singing that for days whenever I walked down the street. One night some dude starting singing back to me. I think he mixed up his songs though, given that he looked me in the eye and belted out, “And darling, DARLING, stand! BY ME!”

PPS. And then when I was walking to the train station to head to bowling, a guy standing on his stoop said, “Hey, nice voice.” “Thanks,” I replied, and kept walking. He called after me, “If I give you my number, will you sing it to me?”

Awkward pickup lines. More common than diabetes.


Yes, the time has come: the 42nd annual New York City Marathon is this Sunday, November 6th. Once again, I am running with my dad. Once again, I have endured many miles, many high and low blood sugars, and many loads of sweaty-gym-clothes laundry to get to this point. Expect a full update later. But if you read this before, say, 4 PM on Sunday….please send us some prayers and good vibes! I am a little nervous and a LOT excited. 26.2, guys– bring it on!

5 comments to Simonpalooza-Big Apple Edition

  • Tina

    Caroline I am so happy you wrote this! I am even happier you put the NY Simonpalooza event together and even happier still that I was lucky enough to meet Simon. His smile is so infectious and he is an awesome hugger. I can’t wait till we see him again. You bring Simon, I’ll bring the cupcakes ;)

    Caroline your beautiful voice will play on in my mind as I fall asleep tonight and hopefully bring me many sweet dreams of wonderful D Meet-ups past.

    I will be out East Sunday but you are in my thoughts and prayers are with you for the marathon. Here’s to good BGs and quick and easy miles! You really are an inspiration!

  • You say things in ways I never could. :) I miss NY & you!!! And of course, Simon. :)

  • great post, caroline! i totally agree, simon’s entire visit was all about love. that undercurrent was in kc too. i feel blessed to have been able to be a part of it. now i just need to meet you! :)

    and you’re totally gonna rock it on sunday. i know it!

  • Too Awesome for Words! Almost makes me feel like I was there (even though I wasn’t)…

    Good Marathoning Vibes to You & Your Dad! Cheers :)

  • How did I not see this awesome post?? Love it to bits! I’m so SO glad I made it to Simonpalooza! (I just wrote my own post about it & how it touched me, as well!) It certainly was a special day filled with love:-)

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