My Darling Disability - a Column by Kendall Harvey

Friedreich’s ataxia (FA) has changed so much about who I am. The physical effects have changed how I think, act, feel, and relate. Some of the changes are good, some are bad, and others are just complicated and hard. My parenting abilities have changed in all of the above ways.

One of my favorite books to read to my children is “What Do You Do With a Problem?” by Kobi Yamada. In it, the book’s main character suddenly finds himself facing a problem. He worries about “what would happen, and what could happen.” The more he worries about his…

Friedreich’s ataxia (FA) is a cruel diagnosis in several ways, and those ways seem to frequently morph, multiply, and momentarily take over my life. When I first started to learn about FA and my particular prognosis as a late-onset patient, I concentrated on the disruption to my walking ability…

I fell head over heels in love with my husband, Kyle, when I was 16 years old. By 18, I knew I would marry him. Then it came time for college, and though we didn’t go to the same university, our schools were only 20 minutes apart. We continued dating throughout…

During the Fearless Mom 2022 conference in February, I learned about an interesting phenomenon from keynote speaker, clinical psychologist, and consultant Dr. Robi Sonderegger. According to Sonderegger, the English language is one of the few languages in which we describe our feelings or our pathology as a state…

Have you heard the expression that “There’s a fine line between love and hate”? The idea is that there’s so much passion required for every all-consuming emotion that things could easily tip from love to hate, and vice versa, when all of those wild emotions are running free. If this…

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…

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…

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,…

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…