Nearly anyone that knows me knows that pasta has been my lifelong favorite food. We stock a variety of shapes and flavors in the pantry so I always have different options to choose from. Among them are single serving, microwaveable mac ‘n cheese cups. A few weeks ago, I realized…
Columns
Some losses don’t give you time to prepare. The sudden passing of Eric Dane, a Hollywood icon who couldn’t escape the ugly grip of amyotrophic lateral sclerosis (ALS), is one of them. It’s the kind of news that doesn’t just make you sad. It unsettles you. It pulls…
March seems to stretch to infinity, but one bright spot is the promise of spring. It’s also National Reading Month, in honor of Dr. Seuss’ birthday. Our daughter-in-law, Jill, is a literacy specialist at our elementary school. She’s always involved with school projects, voluntarily or otherwise. During a…
I’m getting ready for a trip to see my dear friend Christi get married this month. It’ll be the first time I meet her soon-to-be-husband in person, and from what she’s shared about him, I am so excited for that moment. Apparently, she has told him a lot about me…
Note: This column describes the author’s own experiences with Cymbalta (duloxetine). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Every morning, my caregivers present me with a bouquet of drugs. What started as a measly two syringes has become a…
A stool. A chain. A person’s body. None of these things is what I’d usually call “art materials,” but that’s exactly how contemporary Singaporean artist Amanda Heng sees them. During a recent trip to the National Gallery Singapore, I discovered “Walking The Stool,” a 1999 performance by…
It is always an interesting and fun challenge to navigate my limits and needs while living on my own with SMA. I have a wonderful community of friends and caregivers who come to my house throughout the day and night to assist me. Still, I am constantly on the…
At the beginning of the year, I felt a sense of calm because I finally had enough nurses to complete my home nursing staff. There was no pressure to find a replacement for a nurse leaving my case. That kind of calm is priceless in my life with SMA.
As a college freshman pursuing a degree in special education, I assisted in two nearby elementary classrooms. The students all had moderate cognitive challenges. I remember a few even now: Roger, with his suspenders and his family’s pigs (Fred and Ethel), and Tina and Richard, adorable twins. All three had…
As someone living with SMA, I’m really thankful for the creative products that have been designed and invented to make mobility easier for me. Some of these are add-ons to my wheelchair that we’ve purchased, some my dad has made or modified, and some are things my friends have…
