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Though I’ve had 20-something Spinraza (nusinersen) injections, my latest procedure proved most eye-opening for me. For almost seven years, I’ve gotten lumbar punctures to deliver this tiny but mighty medicine directly into my lower spine. After a handful of injections, I understood the drill. I knew what…

The insidious nature of SMA type 1 that was affecting our baby Jeffrey intensified in October 1997. While relatively calm moments occasionally appeared after a disastrous pulmonary consultation earlier in the month, Jeffrey began experiencing respiratory distress to the point of needing morphine. My frazzled…

Although I often don’t like to admit it, I sometimes feel as though my identity has switched from person to patient overnight. The past few years have been hellish, with one health battle after another. It feels like I’ve been sidelined in my own life. But despite the…

I’ve written about how I’ve looked for my own nurses to provide my SMA care, but I don’t think I’ve been clear that I’m only assisting my home healthcare agency in its search. Over the past 37 years, I’ve used a few home health agencies and spoken…

To say Facebook Inc.’s rebrand as Meta Platforms Inc. was controversial would be an understatement. The company’s pivot from being a social media company to a “metaverse” company — essentially, one that focuses on integrating virtual worlds with “real life” — was mocked across…

“I wish the ring had never come to me. I wish none of this had happened.” Frodo says this to Gandalf in “The Lord of the Rings: The Fellowship of the Ring.” He laments that his journey is filled with peril and despair, and he wishes to…

First in a series. “What was your support system like growing up?” I was on the phone with a researcher from Augustana University in South Dakota. We were discussing my transition from pediatric to adult care as someone with a disability (in my case, SMA). I’d just finished…

Growing up, I loved the library’s summer reading program. I’ve always been a bookworm, so logging hours of reading and being rewarded for my hobby was a highly satisfying endeavor. My favorite prizes were, of course, new books. Last year, I was thrilled to learn that this program from…

My late mother, an accomplished pianist named JoAnn Derden, used to perform double-piano concerts with her sister, who insisted that the music — intricate, demanding classics — be memorized. Mom begrudgingly obliged. When those stressful days ended, Mom enjoyed improvising and playing two-piano music with me…

Through my experience with SMA, I’ve come to understand the fragility of life. I’ve also come to understand the fragility of my wheelchair. I’ve been using a wheelchair for three decades and have learned how invaluable it is to my life and my independence. Though people often…