Columns

What It Means to Stay Healthy While Living With SMA

One glance at my medical records will very clearly tell you that I’m not exactly healthy. The information contained within my chart includes a primary diagnosis of spinal muscular atrophy type 1 and a list of medications prescribed to treat that disease and manage its…

SMA Is Part of My Identity, and I’m Proud of It

I came close to starting my first-ever Facebook war recently. Well, not exactly. My conscience quickly kicked in and my mother became my sounding board instead. After reading a comment from a stranger on the internet, I had a lot to say. Sadly, I’m almost immune to the negative feedback…

Appreciating the Spunk and Optimism of a 7-year-Old

“I haven’t had cancer since I was 11 months old!” our cheery granddaughter recently proclaimed. Clara turned 7 at the end of December. She’s witty, imaginative, spunky, highly entertaining, candid, cute, and sharp. Sometimes, though, her facts are a bit skewed. She’s never had cancer.  What she does have…

This Year, I’m Breaking Up With Limiting Stories

First in a series. When it comes to New Year’s, there are two types of people. Either you subscribe to the magic of a new year, or you believe there’s nothing inherently special about Jan. 1. Or maybe you’re more like me. While the optimist in you wants to embrace…

Why 2023 Will Be My Year of Resurrection

I have been waiting my entire life. Waiting for someone to love me. Waiting for the snow to melt. Waiting for my skin to clear so I could leave the house without feeling like an embarrassment of a human being. Years ago, in 2019, I wrote a column about a…

What if I Could Take a Vacation From SMA?

“Yesterday, All my troubles seemed so far away, Now it looks as though they’re here to stay, Oh, I believe in yesterday.” Among the countless hits by the Beatles, “Yesterday,” released in 1965, has stood the test of time as one of the most revered and influential songs in history.

Memories of the Past, and a Miracle in the Present

The Christmas spirit eluded me in 1997. Our baby Jeffrey, diagnosed with SMA that summer, had snagged his wings that November. Needing to find something positive, I focused on why I should be thankful. Jeffrey was in heaven, free from the ravages of SMA. I knew that, and…