Late last year, I embarked on an unexpected journey to self-discovery. The past several years had been an uphill battle with my health, each day bringing its own relentless fight. The good news was that I was surviving whatever conditions came my way. The bad news was that I…
Those of us who live with a disability that severely limits our motor skills find ourselves continually depending on others for assistance. In addition to essential daily tasks, we need assistance with seemingly mundane activities like painting one’s nails or trimming a beard. We rely on family members or…
When you’re living with SMA, you quickly learn that you cannot function without someone else’s help. One of my earliest memories is of a nurse telling me that she’d asked doctors to remove my nasogastric tube for me. I must’ve been 3 at the time. My parents weren’t…
On a rainy day in April, I write the final words of my third novel: “The End.” If you follow me on social media, you’ll know this book has not been without its hiccups. I won’t get into the nitty-gritty of it, largely because I chronicled everything on Substack,…
The other night, I asked my husband, Randy, if he’d like to watch a movie. Although I was in the mood for some Denzel Washington action, another of his flicks caught my eye. I wasn’t familiar with “The Little Things,” from 2021, but it had a stellar cast…
Taylor Swift, the light of my life, the one artist who’s gotten me through all my toughest eras, once wrote: “So make the friendship bracelets/ Take the moment and taste it/ You’ve got no reason to be afraid.” I took that advice last month. Well, except for…
When I was a little girl, I loved searching for dandelions at the first sign of spring. My mother would pick one off the ground for me, and I’d excitedly use all my strength and breath to remove the fluffy seed ball, or blowball, from the stem. One by one,…
Maybe you’ve noticed from my past columns that my family enjoys traveling. We’ve been blessed to visit a variety of destinations together, but we’re repeatedly drawn to locations with scenic coastlines and warm climates. My mom books all of our family trips. With a lifetime of…
Memories wield immense power in the recesses of the mind. They can evoke varying emotions, from exhilaration and delight to sorrow and profound grief. Countless memories regularly swirl through my consciousness. Yet, as I pondered ideas for this column, one memory persisted: my recent graduation from Harrisburg Area Community…
A few weeks ago, my co-workers and I had a candid discussion about the things that tick us off. I work with a large team of patient and caregiver columnists from this site’s parent company, and we share many similar experiences and mindsets. Our monthly community calls over Zoom…
