Columns

My experience can teach others about home health nursing

Of the 43 years that I’ve been on my SMA journey, home health nurses have accompanied me for 39 years. I know a lot about home healthcare, particularly how registered nurses and licensed practical nurses work in one’s home. Unfortunately, not everyone is familiar with home health nursing and…

SMA creators can talk about more than living with a disability

The 2023 film “American Fiction” follows a frustrated writer named Thelonious “Monk” Ellison (portrayed by Jeffrey Wright). While his books receive critical praise, his lack of commercial success stems from his resistance to writing more popular literature. When Ellison visits a bookstore, he groans when he finds his…

Turning 30 with SMA brought up unexpected feelings

When I was younger, the idea of me turning 30 felt like a distant dream for me and my family. Living with spinal muscular atrophy (SMA), I was constantly reminded by doctors, statistics, and even the quiet fears of those around me that my future might be shorter, narrower,…

I embrace the gift of giving care to loved ones

My teacher parents were hardworking, generous, creative, witty, and caring. Shortly after I began college, my beloved maternal grandmother moved into an apartment added to our family’s house. During Grandmom’s episodes of congestive heart failure, Dad took her to the emergency room every time. Genuinely happy to help, he…