Columns

I’m one of those people who can get lost deep in thought. As a busy mom to many in a bustling household that could seem like chaos to others, my thoughts are often my only quiet time. I share seven children with my husband, Jason: Lexi, 24; Max, 20; Chance,…

My facioscapulohumeral muscular dystrophy (FSHD) has progressed to the point where daily activities are increasingly challenging, and often impossible, to manage on my own. As a result, I now need more help than ever before. I know I’m doing the best I can. I exercise daily, hoping to keep…

Living with a rare disease is incredibly complex, with countless layers to navigate. Managing daily life amid so many unknowns — and trying to find a regimen that truly works — can feel overwhelming. From the routine of medications and other relentless therapies to countless medical frustrations, we’re forced…

I recently found myself rummaging through a very old collection of things from my childhood that my mother had preserved. Raise your hand if you have stuff like this: a box of certificates and trophies that you don’t remember, newspaper clippings of school events, scouting programs, a math paper from…

My family needs more space. I wrote about this recently, and we have since decided not to remodel our current home. Since there’s no room to add on, we’re now focused on finding a new, larger house. We have a big family. My husband, Jason, and I share seven…

On Feb. 19, my girlfriend, Amanda, and I presented at a seminar titled “AI in Social Work” at the National University of Singapore’s School of Computing, on behalf of our accessible art studio, Rebirth Ensemble. It explored how we can harness artificial intelligence (AI) to drive social impact by…

I’m going on a blind date! I should mention that it is with a book. Regular readers of my column will know that I am happily married to Jason, my husband of nearly 25 years. I got the idea a couple of weeks ago after visiting an antique…

My family and I have never been athletically inclined. Our talents lie in other areas. That being said, we’ve enjoyed watching the recent Winter Olympics together. As a blind person, I couldn’t see the skiers, skaters, sliders, riders, jumpers, and other athletes in action, but the commentators provided descriptions…

I hate muscular dystrophy. In my darker moments, I want to scream into the void of the universe — until I remember that I can’t scream anymore. In crowded spaces, others often can’t hear me, so I remain quiet. This goes against every fiber of my being; everyone who…

As a caregiver to three sons living with Duchenne muscular dystrophy (DMD) and a mother to four other children, I have learned a lot over the years. Today, I want to use that knowledge and experience to give back to the community. Being a part of the Duchenne community…