Michelle Was Here: Honoring Type 1 Diabetes Community Members

Image by StockSnap from Pixabay

I first met Michelle Bauer while working at Beyond Type 1. The Saturday before I started, I learned about the tragic passing of former CEO Thom Scher. Having experienced profound grief after the loss of her son, Jesse, at the age of 13, Michelle quickly stepped up to offer grief support to the team during this difficult time. I felt a connection with her, as we were both from Wisconsin, while the rest of my colleagues were scattered across the U.S. In the months that followed, we discussed meeting up or finding ways to promote our books together, but we never found the opportunity.

During a Zoom call, Michelle offered to send us a copy of her book, “Jesse Was Here.” Everyone on the call felt her kindness, nurturing spirit, and generosity. Over the years, Michelle and I maintained our connection through our work in the diabetes community. While I don’t claim to know her well, I can confidently say I understood what she stood for, and for that, I will always feel a special affinity for her.

She created a space for comfort and healing that resonated with so many, paving pathways for joy after grief.

Michelle represented a common experience in the diabetes community: she advocated for those grieving the loss of loved ones due to diabetes. As a person living with type 1 diabetes myself, I can attest that the fear of unexpected loss looms over both the person with diabetes and their loved ones. Despite excellent management, unforeseen events can occur. And yet, it is not so much the fear of dying that weighs heavily on my mind, but the fear of not living fully, of not connecting deeply, and of not making the impact I envision. This realization gives me stomach cramps, reminding me that we are but a blip in the vast universe, yet the small actions we take and the brief time we have here truly matter.

Michelle helped spread awareness about the signs of diabetes to prevent diabetic ketoacidosis (DKA), ensuring that everyone has the best chance at living a healthy and fulfilling life with the condition. She found ways to help others navigate their grief while sharing her own experiences in “Jesse Was Here.” Her work later inspired the creation of a program called Jesse Was Here, which provided space for others grieving to find community and connection and share their stories after experiencing loss due to diabetes.

Reflecting on the community she crafted with Beyond Type 1, Michelle shared:

“When I lost him [Jesse], there was this feeling of dread — I thought I was going to lose my community. I’d spent so much time working in diabetes, and all my friends either had type 1 diabetes or their kids had it. I was thinking, ‘Well, who’s going to want to hang out with a mom who lost her kid to a disease that their kids have?’

What happened was actually the exact opposite. My friends rallied around me. They wanted me at events and encouraged me to talk about Jesse. I felt that what was missing for me was connecting with others who were going through similar experiences.

I started reaching out to people and gradually began talking more about my loss, and slowly but surely, the Jesse Was Here network formed. I found it incredibly cathartic to talk to others who truly understood my pain.”

Michelle was well-connected throughout the diabetes community, from Breakthrough T1D to Thrivable to Beyond Type 1, and possibly many more organizations, groups, events, and communities I am unaware of. Her work in the space brought comfort and healing to countless people affected by the hardships of diabetes.

After taking a break from social media, I logged back onto Meta on Tuesday, November 12, 2024, and learned of her passing through an announcement on the Breakthrough T1D Ride page. I had to read the paragraph several times to fully comprehend it. Honestly, I still don’t think the reality of her loss has sunk in. I have been trying to make sense of it in the best way I know how to organize and share my thoughts and feelings — through writing.

On her passing, Breakthrough T1D stated, “After Jesse passed away, Michelle continued to advocate, educate, and push the envelope in his name. In honor of Jesse and all those who have passed away from T1D, Mile 23 of each Breakthrough T1D Ride is ridden in silence.”

One does not need to know someone deeply in the diabetes community to feel their impact or to feel as if they have lost a friend. That is how I feel.

This experience has led me to reflect on how much more intentional I want to be in forming deeper connections with those I admire, appreciate, and respect — both in this space and beyond. If this applies to you and you are reading this, please know that I genuinely want to connect with you and am grateful for the ways you are making a difference. I see you and recognize the effort you are putting forth; I thank you for your consistency.

I wish I could have shared these words with Michelle. Instead, I offer them to the universe in her memory, hoping they may resonate with her spirit and with all those mourning this loss, including the families and friends of the four others affected by this tragic event. This group is loved and valued; this is clear in the sentiments shared across postings on the news.

Many are impacted by this loss far more than I am. My heart goes out to them, and I extend my deepest, most sincere condolences. My heart breaks for everyone impacted by these tremendous losses. In this tragic event, the diabetes community also lost fellow Breakthrough T1D riders Jeff Bauer, Josh and Tammy Stahl, and Barry Sievers.

Michelle, Jeff, Josh, Tammy, and Barry were all here — and they all truly made a difference.

Although I did not have the pleasure or privilege of meeting Jeff, Josh, Tammy, or Barry, I want those who knew them best to know that I am grieving alongside you and offering my support in whatever ways I can.

Honestly, I wasn’t sure about posting this, but I believe it’s important to celebrate the impact people have on our lives, even if we don’t know them well. Moving forward, I hope to do that in life more presently. That said, if you’ve taken the time to read this, I hope you see this post simply for what it is — a tribute and reflection of gratitude for the lives that were taken from us too soon. If you are also struggling to find meaningful ways to honor, reflect, and acknowledge them, please find support here.

Finally, in honor of Michelle, Jeff, Josh, Tammy, and Barry, all who are grieving, all who have grieved, and all who will, when you feel ready, please continue to share the warning signs of diabetes and reach out to those who may be experiencing grief related to diabetes.

We are here and now…let us never stop in our relentless pursuit of doing the work that matters most for the people who need it most.

We all need to lean on each other to create better communities for ourselves and our loved ones. Act on your care and pursue your purpose; your consistency in these lanes will always make a huge difference.