Columns

I’ve been mostly using a wheelchair for more than eight months, after relying on a walker or rollator for seven years, so I’ve done a fair amount of explaining to people what Friedreich’s ataxia (FA) is and what living with it is like. Explaining FA — what…

Since writing my last column, I’ve been struggling to find hope after being denied participation in a gene therapy clinical trial. That may seem strange coming from me, since most of my writing over the years has been about the stubborn kind of hope that people living with…

Today I went into my kitchen to make a chicken sandwich with cheese, which sounded like the perfect idea for lunch. Fresh bread, some lettuce, a little mayo, salt and pepper — all these ingredients would make my sandwich sing. First, I pulled the ingredients out of the fridge. My…

Living with a visible disability caused by Friedreich’s ataxia (FA) is no simple feat. It takes a lot of trust to simply get out of bed. I have to trust that the Skyclarys (omaveloxolone) I take every morning will have more benefits than side effects, and that my…

I don’t often write about my life before Friedreich’s ataxia (FA) symptoms severely altered me at age 25. I don’t think that pining for the past is helpful when I wish to stay positive in the present and hopeful for the future. However, one of my old passions is…

“Is it something sad?” Amelia always asks this question when I tell her we need to talk. Like an anxious employee worried about being in trouble with the boss, Amelia fears hearing sad news. My beautiful 13-year-old daughter, who has Friedreich’s ataxia (FA), has a very sensitive heart. Usually…

Have you ever had a thought pattern become an unshakable way of thinking about yourself? A few months ago, I grew sensitive about my speech. I was convinced that my Friedreich’s ataxia (FA) had become overpoweringly obvious and taken away my ability to speak intelligibly, and my confidence took…

Yesterday, I woke up with a long to-do list, but I didn’t want to get out of bed. Simply sitting up in my cozy, adjustable bed and watching YouTube all day was what I wanted. The covers were calling me to stay. But, like most people, I had to pee,…

If you’ve followed my column for some time, you probably know these few defining pillars of my approach to living with Friedreich’s ataxia (FA): FA requires constant adaptation, but I adapt FA to my life rather than adapting my life to accommodate FA. I try to live intentionally…

A few days ago, I heard a scientist talk about the randomness of being born. For example, what are the chances of your parents — and all of their ancestors — meeting? Then there’s the sperm that wins the race against millions of others to the egg. It all seems…

I recently met with an administrator at my children’s school to discuss their experiences, their current grades, and how we can set them up for success in the next school year. As we discussed their dyslexia and its effect on their academic abilities, we also spoke about the unexpected gifts…

For a long time, I thought the moment I’d start using a wheelchair would be my choice. It wouldn’t be an easy one, of course, but it would still be my decision. Living with Friedreich’s ataxia (FA) often feels like a series of choices: Cane or no cane?…