Columns

I’ve been living with Friedreich’s ataxia (FA) since 2013, and I’ve been a mom since 2014. FA is progressively degenerative, and I’ve slowly become more disabled as my children have grown up. I began using a walker full time in February 2019, when my son,…

When doing patient advocacy, I’m frequently asked, “Tell me your rare disease story.” My initial response is to sigh on the inside. Why the sigh? After all, I’m fortunate to have been given a platform to advocate for myself and my disease community. But one reason is because I internally grapple…

During a recent drive home from an appointment with my new primary care physician (PCP), I felt a dark cloud dissipate that I didn’t even know was hanging over my head. The sun was shining, and I sang a couple of stanzas along with the car radio. It was my…

“Because we cannot bend the space-time continuum?” The words rolled out of my mouth and landed with a thud in what was already an uncomfortable conversation. If you’d just walked in the room at that moment, you would’ve been incredibly confused as to what was happening. There was a doctor…

I recently wrote a column detailing my initial thoughts about the latest chapter in my Friedreich’s ataxia (FA) story: the process of accepting that I need to transition to a wheelchair. This shift is incredibly daunting, not only physically, but emotionally, logistically, and financially. Where do I start?…

Welp, it’s happened again. Summer has wound down and the gears of school have started to wind up. I can feel it pulling us into a new schedule that doesn’t necessarily include bowls of melting ice cream and homemade lemonade, half of which is in ice-filled glasses while…

“Time is a flat circle. Everything we’ve ever done or will do, we’re gonna do over and over and over again … forever.” — Rust Cohle (Matthew McConaughey), the pessimistic and existential homicide detective in “True Detective” Based on philosopher Friedrich Nietzsche’s doctrine of eternal…

Back-to-school season is almost here again. I see advertisements for it everywhere. Kids want clothes with sharks on them, teachers want kids with calculators, and parents want new backpacks (for their kids). Here in New England, the climate changes as fall approaches. The days are getting shorter, the nights are…

I have always loved children. This feeling has been woven into so much of my life and career. When I found out that we were expecting our eldest, I bought onesies and hung them up around the entrance to our home. When my husband came home, I held up one…

The Friedreich’s ataxia (FA) transition I have dreaded for over a decade is approaching, and I am beyond overwhelmed. Despite my best efforts, adaptations, precautions, hopes, fears, and routines, I think the transition to a wheelchair is right around the corner. You might be asking, “Why do you…

I recently read a column by my colleague Ben Hofmeister for Multiple Sclerosis News Today. He wrote that, for him, disability pride is about celebrating the advocates who came before us and who made the Americans with Disabilities Act possible. He also made the point that…

“My mom is kinda crazy,” my daughter Amelia said with a half giggle while talking with one of her friends. If you ask me how often that’s said, my response would be “a lot.” Though sometimes the reference is about how far I’ll go to advocate for her, I’ve…