SMA News Today Columns

September 25, 2020September 25, 2020

Celebrating a Monumental Birthday 2 Decades in the Making

For my birthday last year, I wrote about how each year is a blessing. I still find that to be true. Each birthday is a cause for celebration, as none ... Read more

September 25, 2020September 25, 2020

What Home Schooling Was Like for Me

SMA News Today Columns

I was a sophomore in high school when my parents and I agreed to home-school me during the winter months. It was a spur-of-the-moment decision, but a necessary one nevertheless. ... Read more

September 23, 2020September 23, 2020

Ella Creates Special Bonds With Her Pets

SMA News Today Columns

My 10-year-old daughter with SMA, Ella, loves animals, so much so that she has a computer game simulating the adoption, trading, and buying of animals with others. She and her ... Read more

September 22, 2020September 22, 2020

Everything Takes Extra Effort When You Have SMA

SMA News Today Columns

It took three people to complete my retinal scan during my vision appointment the other day. Most people can just prop themselves up against the machine, stare into the camera, ... Read more

September 21, 2020September 21, 2020

‘Disability Visibility’ Imagines a Wildly Necessary Future

SMA News Today Columns

Content warning: The following contains discussions of ableism and eugenics. I knew from the dedication that “Disability Visibility: First-Person Stories from the Twenty-First Century” would be healing. “To my younger ... Read more

September 17, 2020September 17, 2020

A Narwhal Pierces Through Azure Ceilings

SMA News Today Columns

On my writing desk sits a narwhal. Not an actual narwhal from arctic waters. That would be absurd. It’s a stout piece of pottery I painted alongside my niece last ... Read more

September 16, 2020September 16, 2020

The Importance of Paying Attention

COVID-19 Columns, SMA News Today Columns

In the beginning of the COVID-19 chaos, I tried to stay informed of updated health-related warnings and recommendations. I soon waved the proverbial white flag to ward off permanent whiplash ... Read more

September 16, 2020September 16, 2020

Making Adjustments After Ella’s Visit to the Pulmonologist

COVID-19 Columns, SMA News Today Columns

Our daughter with SMA, Ella, had a doctor’s appointment with her pulmonologist recently. Her grandparents took her to the appointment because my wife, Lindsay, and I were working. Ella and ... Read more

September 15, 2020September 15, 2020

Wearing My Vader Mask at Night

SMA News Today Columns

Every morning when I wake up, I feel like my nose took a beating the night before. Grogginess is one thing, but when you factor in a BiPAP machine, it ... Read more

September 14, 2020September 15, 2020

I Think My Dreams Are Telling Me Something

SMA News Today Columns

The romantic in me wants to believe that dreams are portents, or windows to the psyche, or invaluable self-knowledge tools. But the therapist in me, who dabbled in clinical psychology ... Read more

September 11, 2020September 11, 2020

Grasping the Reality of Evrysdi, a Breakthrough Treatment

SMA News Today Columns

I have never been a morning person. My family, friends, co-workers, and pretty much anyone that has ever met me can tell you this is true. But on rare occasions, ... Read more

September 11, 2020September 11, 2020

The Message I Discovered in Celery Juice

SMA News Today Columns

I admit that this column’s title is one I never thought I’d write. But alas, it is 2020, and most of this year has been a series of “never thought ... Read more

September 9, 2020September 9, 2020

Ella Enjoys Her First Days of Remote Learning

SMA News Today Columns

Our daughter Ella, who is 10, recently enjoyed the last few days of summer before school started again. During the last of her free time, she played outside, used her ... Read more

September 9, 2020September 10, 2020

Ella Enjoys Her First Days of Remote Learning

SMA News Today Columns

Our daughter Ella, who is 10, recently enjoyed the last few days of summer before school started again. During the last of her free time, she played outside, used her ... Read more

September 8, 2020September 8, 2020

The Uncanny SMAers

SMA News Today Columns

Within the pages of the Marvel universe, one of the most iconic superhero teams is the “Uncanny X-Men.” There’s Cyclops with his optic blasts of energy, Marvel Girl with her ... Read more