Defining Yourself - a column by Jean Walsh

I imagine young people with Friedreich’s ataxia (FA) must search the internet to learn more about their diagnosis. Maybe they will come across this column. So this week, I will write to them. When we are young, our friendships are central to our lives. But after I was…

I recently watched a video that showed people dancing, hugging, and laughing together, their sense of community shining through. The video, which was shared on Friedreich’s Ataxia News‘ YouTube account from April’s Annual Ataxia Conference, filled me with both envy and pride. When I was diagnosed 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…

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,…

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…

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…

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…

Nobody likes getting sick. I’ve been battling a stubborn flu virus for a few weeks now. It’s likely the same one my husband, Dave, had for just four days. Not fair, I joke with Dave. Not only am I dealing with this bug for much longer than he did, but…

Last Monday night, as my husband, Dave, left for a weekly meeting, I tearfully wished him well. He looked at me, baffled. The cause of my tears? I had decided to watch the newly released “Matter of Time” documentary on Netflix, which features Pearl Jam frontman Eddie Vedder and…

Frustration is found around every corner in my life with Friedreich’s ataxia (FA). I get frustrated about many things, macro and micro. This can range from the inaccessibility of public spaces (macro) to struggling to find the armhole in my hoodie when I get dressed in the morning (micro).