Columns

My Most Comfortable Position Makes Me Feel Uncomfortable

Before I began writing today’s column, I recorded video interviews for a rather well-known brand here in the United States, focusing on my role as chief creative officer at an adaptive fashion company. While I don’t necessarily love public speaking, the larger issue at hand is often finding a…

To Delete or Not to Delete: That May Be the Question

“MomMom! MomMOM!” When hollered out in glass-shattering decibels, my grandma moniker can mean anything. During my recent extensive time in charge of our grandchildren, Clara, 6, and James, 4, I’ve dashed to the scene of what sounded like emergency status more than once. One episode of Clara’s “MomMOM!” revealed…

Riding the Roller Coaster of Being a 20-something With SMA

In the film “Licorice Pizza,” 20-something protagonist Alana (Alana Haim) leaps from one adventure to the next in the eccentric atmosphere of 1970s Southern California. She meets the smooth-talking teenage actor Gary (Cooper Hoffman), who’s immediately smitten with her. Together, they start a business, encounter a cast of…

How to Become a Freelance Journalist: Crip Edition

From my perspective, the typical path to becoming a journalist looks like this: First, you enter the formal education system and learn what you can from kindergarten till high school. Then, you try to figure out what you’re going to do with your life for the next several decades. You…

I’m Not Really Here: Taking a Ghost Vacation to Refocus

“Sometimes I pretend I’m dead.” This sounds like the lead-in to a particularly macabre joke. But in actuality, it’s a personal practice with the potential to revolutionize our approach to self-care. My friend Andrea Hannah calls it a “ghost vacation.” “Sometimes I pretend I’m dead,” Andrea likes to…

The Best Unorthodox Advice From My Doctor

When you’re living with a complicated disease such as SMA, it’s half the battle to have a knowledgeable and trustworthy medical team helping to manage everything. I’ve always been fortunate in that respect. I know how difficult it is to build a solid medical team, but I’ve somehow collected…