Columns

I’ve spent the last six weeks planning and thinking about the things that are important to me. Most of my time and mental energy is focused on personal goals, finances, de:terminence (the nonprofit organization I founded), and habits grounded in exercise. I also do a good amount of planning…

Often I’d rather dream than face reality. I reflect on this most mornings, when the sun rises enough to turn the sky pinkish-blue and my eyes flutter open. Typically, I wake up on my left side and have to turn myself over to get out of bed. But turning over…

Since I began my Friedreich’s ataxia (FA) journey in 2013, expectations have become a huge part of my life. Before my diagnosis, I had never even heard of FA, let alone expected to engage in a lifelong battle against it. I felt anchorless in a raging sea of uncertainty.

In some ways, I’m probably late to the party. Like many of my friends and fellow columnists at Friedreich’s Ataxia News, adapting to change has been part of living with a progressive disease. I’ve read about Matt Lafleur’s tough journeys on his trike…

I had a wonderful childhood, yet I knew how hard my parents worked to make that happen. So, when I became a grown-up, I felt like I had fairly realistic expectations. I planned on working hard and living a fulfilling life, raising a family, and building a fun village…

Happy January! I hope you have been enjoying 2022 so far. A new year can often feel like a fresh start, providing a renewed sense of hope and courage. Even if you are feeling overwhelmed by the darkness right now, I hope you can still take life one moment at…

I often think about the pity that is expressed to people with disabilities — people like me. I am an obviously disabled young woman, and my Friedreich’s ataxia (FA) is on full display, making me a regular recipient of unsolicited pity. Some people stop and stare, some whisper to…

It’s hard to believe we’ve started another year with COVID-19 still in the headlines and on everyone’s mind. I’ve always felt that each year passes faster than expected, but the past two years seem to have flown by even faster than usual. I’ve never kept track, but I don’t usually…

I saw a meme a couple of months ago that said, “I can either do a morning activity or an evening activity — I am too tired for both.” I shared it with my friends, and we giggled because it was so true for all of us weary, overburdened mothers.

A few mornings ago, I groggily looked up and saw my reflection in the mirror. Because my vanity is wheelchair-accessible, I can see myself when I’m brushing my teeth and fixing my hair. I see the world through two black holes. My dark brown eyes are almost completely black, so…

There is a common saying at New Year’s as people make their resolutions: “New year, new me!” The beginning of a calendar year carries an air of possibility. It is an exciting chance to reflect on the previous year and to plan to make the new year even better. It…

Those who have been following my column about my journey through life with Friedreich’s ataxia (FA) have probably noticed that I try to bring every entry to a positive conclusion. No matter how bleak, trivial, heavy, or uplifting my topic seems to be, I try to wrap it up in…