With that headline, I’d expect this column to belong to my friend and SMA News Today colleague Kevin Schaefer. After all, he’s not shy about sharing less than pleasant aspects of living with SMA, including detailed stories about his trips to the bathroom. But believe…
Columns
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…
SMA Awareness Month is coming up in August. The question for me is, what’s the best way to raise awareness about this disease? My thoughts are that it is best to share that sometimes life can get a little dark for those of us with SMA. Over the past…
“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…
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…
It’s been a minute since I put my degree in counseling to good use. Let’s change that, shall we? Last week, I wrote about a recent ghost vacation. For those who didn’t read that column, here’s the gist: I came back from this year’s Cure SMA conference with a…
It’s not uncommon to plan for the future. Most of us have at least an idea of what we’d like our lives to look like five, 10, or 20 years from now. Some people even lay out detailed plans for how they intend to accomplish their goals regarding careers, marriage…
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…
“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…
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…
