Columns

I often compartmentalize all the significant elements of my life, and my journey with Friedreich’s ataxia (FA) is no exception. I work eight hours a day and leave work behind for the other 16 hours. When it comes to the podcast I co-host, I set aside specific blocks of…

Focusing on the negative aspects of life always seems to come more naturally than focusing on the positive ones. Whether we like it or not, bad things have a way of taking center stage and eclipsing the good, especially when it’s something significant like becoming progressively disabled. At 34, I’ve…

Second of two parts. Read my previous column here.  I’ve been telling the same old story about my Friedreich’s ataxia (FA) diagnosis for more than 10 years. Maybe it’s time to rewrite it. Like I wrote in my previous column, the facts of my diagnosis will never change,…

Hello there! We recently sprung forward with daylight saving time in my corner of the world, and I love having an extra hour of sunlight each evening. Spring is in the air, and I hope you are able to take a few moments to enjoy the buds blooming and the…

It’s one thing to go through a hardship yourself, but it’s another thing entirely to watch a hardship happen to a loved one. As a parent myself, I know how parents feel any pain and sadness that their children endure. In fact, a child’s pain can almost seem greater for…

A few years back, I wrote a letter to my mom describing my perspective on life and myself. While there was no urgent need to write such a letter, I had a deep desire to affirm for her, as her youngest child, that I have accepted the challenges I’ve…

During actor André De Shields’ Tony Awards acceptance speech in 2019, he shared his three rules for his longevity: “One, surround yourself with people whose eyes light up when they see you coming. Two, slowly is the fastest way to get to where you want to be. And three,…

First of two parts. I answered my phone on speaker and set it on my table. I was worried that the call had a bad connection, as I heard only static. I almost hung up when the displaced-Californian voice of my good friend Kyle Bryant gave our usual greeting:…

There is no single way to handle challenges in life. What works for me might not work for you. And what worked for you last time might not work for you this time. I think the only consistency we can count on when confronted with challenges…

I have several friends I’m still actively connected with today who have known me for years. Some knew me when I worked in church ministry, while others knew me as a gas station attendant. A few have been in my life since college, while most I’ve met within the last…

Friedreich’s ataxia (FA) is not easy to navigate. Like any lifelong journey, it has difficult seasons, roadblocks, and the occasional smooth path when you get to set your cruise control. It has unexpected detours, expenses, learning opportunities, and challenges, resulting in a collection of memories and experiences. Unfortunately, my…

As the end of February approaches, Rare Disease Day, held annually on the last day of the month, is exciting for most of those who live with a rare disease. But every year, something about this day just doesn’t sit right with me. This year, instead of showcasing the…