Columns

“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?…

Since making the transition last year to primarily using a wheelchair, I am often asked why. Over the years, I’ve developed three types of “elevator pitches” to answer questions about my health and dependence on mobility aids. My answers vary depending in part on how much time I have, who’s…

This morning, I did my usual thing. I woke up, stayed in bed, took one pill, waited half an hour, and then took three more pills. During that half-hour, I meditated and caught up on the news on my phone. This routine helps me remember to take my pills. If…

Even with the windows closed, I could hear the loud rattle of my husband’s old car as he pulled into the driveway. It signaled that the time had finally come for a dreaded task we’d been putting off for a while: car shopping. While some people find the prospect of…

I am sure that we have all been around that person who seems to always have it all together — beautiful with hair and makeup done, effortlessly trendy clothes, happy kids sent to school with lunch boxes filled with perfectly well-balanced meals, volunteers for everything, gets praised for being awesome,…

I’ve heard the term “wheelchair-bound” in the media a lot lately. I hate those words. I use a wheelchair because of the symptoms of the disease I have, Friedreich’s ataxia (FA). These symptoms — muscle weakness and neurological problems — mean that at this point in my FA…