Columns

Sunday afternoon’s dreary skies and light rain tempted me mightily to crawl onto the recliner and drift right off. I doubt I could’ve counted to 10 before unconscious bliss took over — momentarily, anyway. It was also a dreary day for our older dog, Maple, a boxer…

Late August marks the start of a new school year, which still affects me even as a 29-year-old working adult. Though I graduated from college in 2016, my niece is starting first grade, my older nephew starts preschool in a few weeks, and both of my younger nephews are…

Candis Welch. (Photos courtesy of Candis Welch) This is Candis Welch’s story: Becoming Ms. Wheelchair California 2023 has given me a newfound pride in my life as a disabled woman. However, I have lived with spinal muscular atrophy (SMA) for decades, and…

In another world, I am my mother’s daughter, waking with the sunrise and heading to bed no later than 9 p.m. But in reality, I take after my father, who sees early risers as the enemy to end all enemies. We both hate mornings with a passion, and have…

Our cat, Toby, waltzed into our family over a decade ago for what was intended as a temporary arrangement. She won our affection quickly, and we decided to welcome her into our home indefinitely. Not that she needed an invitation to stay. Toby said she owned the place, and…

Living with SMA, I too often don’t feel in control of my body. It’s an unsettling feeling to sit with. Some days, no matter how hard I try to take care of myself, my body has its own agenda. Lately, this feeling has been weighing heavily on…

Beach time is fun time. For Brady, center, to partake in the fun, both his brother, Lucas, left, and father, Kevin, help push and pull his customized beach chair. (Photos courtesy of Kevin Chan) This is Kevin Chan’s story: “It is not fair!” These…

Note: This column describes the author’s own experiences with Evrysdi (risdiplam). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. “The drug likely won’t be effective on you. You’re in your 20s, and you’ve deteriorated to the point where…

Jasmine Ramos embraces life with SMA. (Photos courtesy of Jasmine Ramos) This is Jasmine Ramos’ story: I was born in New York City on Aug. 10, 1995. I lived in the Bronx with my parents and two older sisters until I was 2. We…

Ira Walker enjoys an afternoon at Florida’s South Beach. (Photos courtesy of Ira Walker) This is Ira Walker’s story: Throughout 38 years of life, I’ve traveled, met extraordinary individuals, seen more than 20 operas, been the recipient of great guidance, and occasionally received peculiar…