By Mike Matthews
Despite our best intentions at the time, my wife, Kim, and I never did retire when we left our employment. Instead, we refired into the gauntlet of a very busy life of significant caretaking for four generations of family members while striving to maintain a reasonably healthy lifestyle.
Ten years ago, I tumbled into the crucible of dermatomyositis and the added cascade of daily challenges it brings. Through serendipity, I discovered the Myositis Association (TMA), which, along with my wife, has continued to help me climb and traverse the Mount Everest of this serious chronic disease with no cure.
A decade later, with lots of effort and little satisfactory results, Kim and I have found ourselves busier than ever and unintentionally out of touch with TMA and the cutting-edge research and therapies that are starting to emerge. To exacerbate the situation, as a participant in the Voluntary Simplicity Movement since the1970s, I choose to eschew most technology as much as reasonably possible and have no computer or phone, preferring to spend my very limited spare time in nature, mindfully walking on grass, not mindlessly tapping on glass (on a smart phone). This creates a challenge since most resources are online and I have limited access to a computer.
Enter the MyoCon 2026: TMA’s Global Myositis Patient Conference in St. Louis that was held September 24-27. This was an in-person opportunity of total immersion to connect, learn, and receive immediate feedback from the top myositis all-stars and experts in the world. Our expectations were very high yet were greatly exceeded all the way around.
The event was super well organized, and TMA staff, volunteers, and participants radiated good vibes and positive energy that created a fun, supportive “lights-on” milieu while delivering essential information on the serious topic of myositis. We shared stories with other patients from all over the world and were privileged to share our own many experiences.
We extend our wholehearted gratitude to TMA and all involved with creating this important masterpiece. The whole conference was filled with seismic life-changing takeaways for all four days. A few of many highlights for Kim and me included: a once-in-a-lifetime excursion to the The Jeffrey T. Fort Neuroscience Research Building at Washington University in St. Louis; the opening keynote address by Meghan O’Rouke, New York Times best-selling author of The Invisible Kingdom: Reimagining Chronic Illness; the inspiring Hero’s in the Fight Awards, which included the posthumous Patient Ambassador Award to Father Stuart Long (“Father Stu”), accepted by Father Bart Tolleson who shared the inspirational story of his priestly friend; and the award-winning journalist Mike Bush, recently retired news anchor and storyteller from the great KSDK-TV in St. Louis, who put an emotional and heartfelt capstone on the amazing conference as the closing keynote speaker. Mike’s stories of hope left tears in the eyes of most of the audience, and I will not confirm or deny I was one of those people.
As a retired teacher, I grade MyoCon 2026 with an A plus and a total success that provided us with an opportunity to break free from our busy schedule to focus on an incredible learning environment that compressed a lifetime of education about myositis into just four days. I have already taken action on one new idea from the conference by moving up a doctor’s appointment by two months to discuss a medication change I cannot contain my enthusiasm for.
The boxer Mike Tyson said: “You fall down a hundred times, you get up a hundred times, you learn a hundred lessons.” Rather than marinate in an understandable disenchantment with the medical system, let’s be myositis warriors, not worriers. Let’s see the sacred good work that is emerging in myositis and move forward together while finding new treatments and an eventual cure for these rare and challenging conditions.
Mike Matthews is a retired teacher, counselor, and mental health administrator with a mission to create a cohesive and peaceful world. He was diagnosed with dermatomyositis in 2017.
