My life is a sitcom. Recently, I was chatting with my friend Young, a columnist for Charcot-Marie-Tooth News, about our writing processes. He was rather amazed when I told him that I rarely plan column topics. In my life, it’s never…
Columns
I spent the majority of high school — and middle school, and undergrad, for that matter — stressed about my skin. I’ve written about it several times, from my cystic acne saga to the wonders of Accutane (isotretinoin). I guess you could say I’m making up for those long years…
Peter Jackson, the New Zealand filmmaker who spearheaded “The Lord of the Rings” trilogy and the 2005 remake of “King Kong,” is known for being a bit of a maverick. Even after acquiring commercial and critical success for…
I’ll be honest. I wasn’t sure what to write about. To the point where I briefly considered skipping this week’s column. I try not to, because I’m an overachiever who likes the accomplishment that comes from marking something off my to-do list, but … I am wrung out. My head…
April has been a special month for me. It probably always will be because April is when I get to celebrate the anniversary of starting my dream job here at Bionews, the company that publishes this website. Last year, I dedicated a column to a few…
Last week marked 30 years since my diagnosis day. So many emotions resurfaced as I reflected on the past three decades and all that has happened in terms of medical breakthroughs, challenges I’ve overcome, and how my prognosis has changed since I was first diagnosed. Back…
One of the most extraordinary things about life is its ability to change the person we used to be into something completely new. We can’t always choose what befalls us in life, yet we do have a responsibility to choose whether we’re changed for the better or for…
Just over two years after our baby Jeffrey died from spinal muscular atrophy, my brother-in-law, Steven, passed away. My husband, Randy, our two children, Matthew and Katie, and I made the long drive back to our old stomping grounds in Texas, for our first funeral of a loved one since…
On April 9, I traveled back in time. I mean this metaphorically, of course. As much as I wish time travel were feasible in our world, it unfortunately remains the stuff of science fiction and fantasy. Thus, revisiting media I loved as a kid and looking…
It’s not that I didn’t think I’d have side effects. I hoped. Just like I hoped that COVID-19 would wind down by late last summer; just like I hoped “The Rise of Skywalker” would be, like, tolerable. But I knew better. It was a vaccine, after all, and a gnarly…
Recent Posts
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- SMA community honors legacy of disability rights activist Alice Wong
- Teamwork and faith helped my parents raise children with SMA
