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…
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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…
Some people with disabilities say they’ve never wished for different circumstances. Well, I’m about to enter a black hole with you, in revelation of an honest confession: I’ve cast so many wishes into the night, I’ve nearly robbed the entire sky of stars. Odds are, you’ll see my face…
We live in an age of rumors and widespread gossip. Many people seem to be mudslinging, and we’re all covered in it. Gossip didn’t start with the rise of social media, which is just a new medium through which it can slowly drip into our…
The Siren Song of a Magic Cure
A woman lies in a hospital bed, her breathing erratic and her forehead damp with sweat. She’s shaking from the pain she’s in. In a matter of days, the loss of control and sensation in her legs has spread to her right hand and is now progressing to…
My dad and I both heard the perfunctory snap as the right armrest on my power wheelchair lowered. I was about to get ready for bed on a Friday night, and my dad had just transferred me from my bathroom seat to my chair. As he lowered the…
Let’s talk about the green-eyed elephant in the room. I’m a naturally jealous person. The therapist in me is convinced that my childhood has something to do with it — all those hours on the playground watching the kids on the monkey bars, wishing quietly for a body like…
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