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How am I coping with chronic pain? Let’s see …

Last in a series. Read parts one and two.  I bought shoes I wasn’t sure I’d wear. That seems like a trivial statement, I know. Except the shoes cost 119 SGD ($89) including shipping, and I hadn’t had any income for six months at the time of purchase.

Amid the chaos, spring’s transformation brings hope

My husband, Randy, and I had our first baby while I was teaching students with a variety of difficult diagnoses. Our son, Matthew, was followed three summers later by our daughter, Katie. During both pregnancies, I never worried that they wouldn’t be healthy. Then, before I blinked too many times,…

Why I hate (part of) the 21st Century Cures Act

Even with SMA, my checkups have, for the most part, become pretty routine. Every six months, I drive 30 minutes to my nearest specialty clinic. While there, I see various doctors, each with their own unique vibe. My neurologist catches me up on all the books he’s read recently.

Finding light in the winters of life with SMA

A few weeks ago, I glanced out my window and instinctively squinted. Before me was my backyard covered in a blanket of ice and thick snow, blinding me with the sun’s reflection. The rocky hills were now shiny and smooth, and the frozen landscape glistened in a magical way. The…

Seeing myself in the world of the ‘Wicked’ film

When the movie version of “Wicked” hit theaters last fall and skyrocketed to critical and commercial success, musical theater enthusiasts everywhere felt validation. The blockbuster adaptation of the hit musical struck a chord with devoted fans, casual viewers, and anyone with a passing familiarity with “The Wizard of Oz” mythos.