Columns

Staring across the table, I gave a reassuring smile to the student intern who was shadowing me that day. I mouthed “it’s OK” as heavily armored police moved through the home. We’d arrived at a client’s house just moments before a search warrant was executed and, with our badges visible,…

As I’ve grown more physically disabled with Friedreich’s ataxia (FA), I’ve developed a new ability: knowing quickly how to address a stranger’s concerns about my disability. Whether it’s a curious child inquiring about my walker, an older person curious about that or other mobility aids, or a fellow…

Years ago, I wrote the column “Becoming the Miracle We Seek,” and I’ve been reflecting recently about its portrayal of an early part of my journey, when I wanted prayer to bring me a miraculous healing from Friedreich’s ataxia (FA). For most of my life, I…

I just began the process of getting my legacy service dog. A legacy dog follows a current service dog and is super important for those who rely upon these animals for independence. I need a service dog because symptoms of my rare disease, Friedreich’s ataxia (FA), have…

I looked at both my hands and scoffed. The next 30 minutes were going to be interesting. I’m an incredibly right-handed person, to the point that my left hand is pretty much just along for the ride. On this morning, my underused left hand was clean while my right had…

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…