Growing up, my pediatrician was more than a doctor; she was part of the family. She supported me through all of life’s transitions, from puberty and menstruation to my transition to adult care when I turned 20. She even attended my high school graduation party. She knew all of my…
I just turned 26 on Sept. 26, which makes it my golden birthday. Never heard of a golden birthday? You’re not alone. It’s believed they were invented by American author and teacher Joan Bramsch in the 1950s. She celebrated each of her five children’s golden birthdays, and the idea…
I couldn’t believe what I was seeing on the news. A tornado had touched down in my home state, Rhode Island, for the fourth time in six weeks. Before these, I’d heard of one or two tornadoes touching down in New England in my lifetime. Never were they close to…
It’s officially fall in the U.S.! The weather here in the North Carolina mountains has been stupendous. I could almost hear our assorted fans breathe a collective sigh of relief when we finally turned them off at times and even closed some windows at night to keep from rousing the…
“People think bisexuals stereotypically can’t decide on which gender we want to have sex with, when the truth is, we can’t decide on anything,” someone in a group chat once joked. I laughed far longer than perhaps was appropriate, nodding along at the truth of the statement, at least in…
Note: This column contains spoilers for the musical “Wicked.” A few weeks ago, I saw the award-winning musical “Wicked” with my sister-in-law. I saw the show back in 2012 with my parents in New York City, and I jumped at the chance to buy tickets when I saw…
I’d just survived a car accident in Phoenix while road tripping with my parents from our home in Minnesota to the 2022 Cure SMA conference in Anaheim, California. (Long story short, my dad ran over a particularly nasty curb in a gas station parking lot. Any other vehicle…
In the SMA community, we expect to grieve the loss of our abilities, given the nature of this disease. But for me, grief often feels like an ambush. In my three decades of life, I’ve lost many abilities. And every ability lost comes with its own grieving period.
So much of life is about gaining maturity through our experiences. Sometimes we go through events similar to ones we’ve experienced before, but we now understand them from a whole different perspective. A few months ago, I shared here that my back was to the wall. I need night care…
I spent a small fortune on cute books for the kindergarteners I taught at Brockman School, then a self-contained public school in Columbia, South Carolina. The students, many with severe disabilities, delighted in hearing the animated voices of the stories I read to them. My own children, Matthew and…
