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…
It’s almost a wrap for this year’s May madness. Whew. For me, the month commences with the birthday of a favorite former student and ends with that of a good friend, as well as my nephew’s wedding anniversary. In between are Mother’s Day, spring sports, end-of-school chaos,…
Note: This column describes the author’s own experiences with naturopathy. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I started naturopathy over a year ago without much hope. I was living with a skin condition that no one but…
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