As another hot summer gets underway, I’ve been reflecting on two pivotal events that took place a year ago this month. These memories elicit feelings of joy whenever I’m feeling down in life with SMA. On June 11, 2023, my summer kicked off with a bang. My best friend,…
Columns
“You and our baby brother should count yourselves lucky,” I told my brother Gabriel after my first appointment with a psychologist for attention-deficit/hyperactivity disorder (ADHD). “If I have ADHD, it means I have two disabilities and lost the genetic lottery twice, yet you guys are fine.” Gabriel laughed…
Note: In an earlier version of this column that ran for a day, the timing of the author’s mother’s death was misstated. She died in 2022, not 2021. A weekend this month packed a particularly powerful punch. My husband, Randy, and I were married on June 7, 1974. So you…
In “The Lord of the Rings,” Sam and Frodo travel through rocky terrains and the murkiest of marshes on the road to Mordor. By the time they finally reach their destination, the hobbits are drenched in blood, bruises, and tears from the hardships of their journey. Contrary to the open…
I’d been anxious about our trip to Austin, Texas, for months. I look forward to the annual Cure SMA conference every year around June, but my excitement this time was tempered by a kind of deep-seated dread. I knew it would be fine, but I was still nervous. It…
Living with spinal muscular atrophy (SMA), I’m often met with this question from others: “How do you do it?” Upon learning how much goes into living a life full of health issues and weakness as well as SMA’s unpredictable nature, many often want to know how I manage…
“Having a sister is like having a best friend you can’t get rid of. You know whatever you do, they’ll still be there.” — Amy Li My sister, Jessie, and I have always shared the closest bond among my four wonderful siblings. Growing up, she understood that I couldn’t walk…
If you had a chance to fictionalize your life in a children’s book, how would you do it? Would you make the protagonist yourself, or would it be a loved one while you are relegated to a secondary role? Would you depict an ideal version of yourself, a character with…
My life often echoes the absurdity of a Monty Python sketch. When my primary care physician called me on a Friday night in early May, I wasn’t thinking about my health. I hadn’t experienced any unusual SMA symptoms that week, and thus wasn’t expecting the urgency in…
This column describes the author’s own experience with a Spinraza (nusinersen) injection. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I thought it’d be different. I thought I’d be celebrating my 30th Spinraza injection with excitement and…
