SMA News Today Columns

December 1, 2020December 1, 2020

Identity, SMA, and Thinking Outside the Box

In his essay for The New Yorker, “Who Am I?”, comedian Demetri Martin explores his identity both literally and figuratively. He opens by saying that he is “not a thing ... Read more

November 30, 2020November 30, 2020

My Period Reminds Me of the Inevitability of Disease Progression

COVID-19 Columns, SMA News Today Columns

Once every few weeks, I’m reminded of my own mortality. A lot of folks dread their period. It’s a definitively unpleasant time between the cramps and the blood and the ... Read more

November 25, 2020November 25, 2020

Being Thankful, No Matter What

COVID-19 Columns, SMA News Today Columns

It’s so much more than the turkey. Memories of childhood Thanksgiving gatherings with grandparents, aunts, uncles, and cousins take me to a happy place. My paternal grandmother, Mammaw, wearing white ... Read more

November 25, 2020November 25, 2020

Ella Has Fun While Sheltering at Home

COVID-19 Columns, SMA News Today Columns

Ella, 10, the youngest of our three children, is thriving. She has friends from school, in the neighborhood, and online. She sings in a community choir, and occasionally plays with her ... Read more

November 24, 2020November 24, 2020

To the People Who Got Me Through This Year

SMA News Today Columns

If 2020 were a movie, it would have the aesthetic of David Lynch and the shocking twists and horrors of a Stephen King novel, and it would run the length ... Read more

November 23, 2020November 23, 2020

I’m Disappointed, and That’s OK

COVID-19 Columns, SMA News Today Columns

Can I be real for a minute? Totally honest? Maybe even a little bit of a downer? I’m disappointed. 2020 was supposed to be my year. I had all sorts ... Read more

November 20, 2020November 20, 2020

Putting a Different Twist on Thankfulness

SMA News Today Columns

Thanksgiving is almost upon us. Meals are being planned, and turkeys are being purchased. The delicious smells and flavors of pumpkin and cinnamon will be consumed in many homes. And, ... Read more

November 19, 2020November 19, 2020

A Sigh of Gratitude After November’s Golden Yawn

SMA News Today Columns

They congregated on a beach in the mild November air. More than 50 of them stood there, wondering if they dare dip their feet into the water or remain lounging ... Read more

November 18, 2020November 18, 2020

Ella Has Made Big Gains Since Diagnosis Day

SMA News Today Columns

My daughter Ella was diagnosed with spinal muscular atrophy type 2 at 14 months old. Our doctor offered us the hope that although there wasn’t a treatment or cure at ... Read more

November 17, 2020November 17, 2020

It’s Been an SMA Kind of Day

SMA News Today Columns

Certain days can only be described as “an SMA kind of day.” It happens when the power cuts off in the middle of the night, causing the BiPAP machine to ... Read more

November 16, 2020November 16, 2020

Hope, Uncertainty, and Shooting for the Stars

SMA News Today Columns

I’m lucky in that, for the most part, I don’t have trouble falling asleep. I am, of course, perpetually exhausted, which probably plays a role, but I like to think ... Read more

November 13, 2020November 13, 2020

My Life Uniquely Allows Me to Be Naturally Empathetic

SMA News Today Columns

I’ve been told many times by many people that I should be a counselor. It’s not unusual for my friends, family members, and co-workers to turn to me for wise ... Read more

November 13, 2020November 13, 2020

Life With SMA Can Feel Like an Anomaly

SMA News Today Columns

Recently, my little hometown in New England experienced one of Mother Nature’s many shenanigans: a decent-sized snowstorm in October, or “Snowtober.” This isn’t the type of climate we are conditioned ... Read more

November 11, 2020November 11, 2020

Remembering That November, 23 Years Ago

SMA News Today Columns

It all started 23 years ago, this propensity for November to pack a punch. In the wee hours of Nov. 1, 1997, a power outage set the stage for an ... Read more

November 11, 2020November 11, 2020

Ella’s Wheelchairs Became Simpler Over Time

SMA News Today Columns

Life has been a roller coaster since my youngest daughter, Ella, was diagnosed with spinal muscular atrophy type 2 at 14 months old. Shortly after her diagnosis, Ella received a ... Read more