MSI Press Blog

  In 1980, I fell down a flight of stairs. The day started out normally enough. Breakfast over, Donnie departed for work, and school lunches prepared, the kids and I were ready to take on the day, as usual. Lizzie had skipped off to her fourth grade class a few blocks from home. Three-year-old Noelle, dressed in a pretty pink dress and her blond hair tied up into two ponytails   with matching pink ribbons was tucked away in the back of our orange Pacer, where she could sit comfortably with her legs stretched out. (Those were days before the invention of seat belts.) Two-year-old Shane was seated on the outside stairs, waiting for me to bring out Doah, in his carrier, along with his suction machine for his trach tube. Doah was on the sofa, next to his suction machine. Everything and everyone in place – except that Shane needed a pair of socks. I quickly scooted down the basement stairs in search of clean socks that should have been on top of the dryer. And the, oops, I slippe...

  It just happened. Not overnight. I just seemed like it. All the rainbow makers had lived -- and become adults. Now what? As we were to find out, the answer to that question was on us. We found out the Catch-22 of adult rare disease care. Pediatric teams were clearly trained and resourced for congenital complexity—but they discharged based on age, not need; typically, age 12. Sorry, Doah, they said, we just now have a diagnosis for you -- CHARGE Syndrome (a newly discovered syndrome), but you are a big boy now, about to be a teenager, so goodbye. At last, finally, we had a label, but no way ahead and no doctors. PCPs available in our area, of course, knew nothing about CHARGE, but they did their best to treat Doah, treating him like any other teenager and then young adults, and now aging adult. Adult systems, we learned, are siloed and symptom-focused, often lacking interdisciplinary coordination or rare disease literacy. Clinicians fear liability or “not knowing”, so th...

Today’s mission: accompany my daughter to a new doctor’s appointment. I sat quietly, letting her self-advocate—because that’s what strong women do. I chimed in here and there with family history, but mostly, I was the silent sentinel beside her. Then came the intake question: “Is your mother still alive?” Excuse me? I look dead?? Was I too serene?  Did my quiet presence read as ghostly? Did I seem soporific? My daughter laughed. “She’s sitting right here beside me.” The assistant turned crimson. I straightened up, punched the air, and offered to do jumping jacks to prove my vitality. She stammered, “I’m so sorry—I thought you were sisters.” Well then. Grandma Ninja: 75. Daughter: 49. Apparently, we’re aging in formation. Message of the day: Let your daughters speak. Let your silence speak. And when needed—let your vitality kick . Also: work out. At any age. Dick Van Dyke is 100 and still works out at the gym three times a week. If he can do it, so can Grandma N...

  They say 65 is the geriatric threshold. I say: thresholds are for doorways, not identities. I didn’t suddenly become fragile when Medicare kicked in. Yes, I have osteopenia—thanks in part to years of “normal” omeprazole doses before anyone warned me it was quietly eating my bones. But I still climb ladders, carry cats, and troubleshoot household systems faster than most twenty-somethings. My bone scan may whisper caution, but my life shouts resilience. So, if “geriatric” means I qualify for discounts and confuse algorithms—fine. But don’t expect me to sit still, wear beige, or fade quietly. This Ninja has decades of stealth left—and a few choice words for the formulary. Grandma’s Ninja Training Diary  is the inspiring true story of a septuagenarian grandmother who dares to dream big—by training for  American Ninja Warrior . Teaming up with coach and trainer Brittany Renz, she embarks on a three-year journey to build strength, resilience, flexibility, balance, and end...