Columns

Saturday, Sept. 21, was a sloppy one. Skies were gray and rain poured down, but there were lots of smiles to go around. It wasn’t an ideal day for the Race for Matt and Grace, a 5K run and 1.5-mile walk to benefit my patient organization, the Friedreich’s…

Guilt is a plight of the human condition that comes in many forms. I wrestle with it often. One common form, for example, is “mom guilt,” a topic that inspires countless books, articles, social media posts, texts among friends, and so on. I grapple with mom guilt almost daily.

I just got back from a walk with my service dog, Wendy. It’s a beautiful fall day in my neighborhood. The mums are starting to burst with brilliant colors, and some of the trees that are a little stressed are developing orange leaves. I had a different topic in…

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…