Columns

The day I got my big idea, I received a package in the mail. Other than that, it was an average, unremarkable Tuesday.  Speaking of unremarkable, the package itself was just that — a thin, brown, rectangle of fraying cardboard, about the size of a throw…

I know I have to practice before it is reasonable for me to meet my expectations or achieve what I set out to accomplish. Although practice sessions can be tedious, time-consuming, and sometimes frustrating, the “routine” practice is commonplace. Routine practice…

One of the first things we did when we learned of our daughter’s Friedreich’s ataxia (FA) diagnosis was to make sure she had all the accommodations she needed in all areas of her life. Since she is still in school, this included working with teachers and administrators to come…

As a 27-year-old, I enjoy going out on the town with a couple of girlfriends. However, going out now takes a lot more effort than when I turned 21. When planning a night out, I assess my level of fatigue and decide which assistive device I need to…

Friedreich’s ataxia (FA) patients face multiple symptoms that can help confirm a diagnosis. The five most common symptoms are difficulty walking, sensory changes (such as hearing loss, involuntary eye movements, vision impairment, and speech problems), scoliosis, diabetes, and heart failure. FA patients are affected differently by these…

My mom took me and my 10-year-old nephew Andrew with her to the movie, probably because we were the only members of our family who wanted to see the 2019 remake of Disney’s “The Lion King.” Andrew wanted to see it because, well,…

In my previous column, I focused on the thought processes that prevent us from doing our best. This subject has been on my mind a lot recently. In a somewhat related vein, I wonder how I’m ever going to get good at…

I have been going back and forth about this column. But I think it’s important to show my readers and myself that I am being authentic, so here we go. Self-accountability is an everlasting process. Like cleaning out the junk drawer in the house, it can’t just be a…

There is nothing better than the feeling of the ocean air in my hair while I bask in the hot summer sun on a beautiful beach. I’ve just described my family’s happy place: Stone Harbor, New Jersey. We look forward to spending a weeklong vacation here every year. As a…

“The Zeego Tales” track the wonders of my new life with my service dog, Zeego. “Hurricane Barry” sounded innocent enough — more like a goofy uncle than a scary predator. After making landfall in Louisiana, the hurricane was renamed a tropical storm, which is what reached my…

I’m learning to be cautious of the commitments I make, big or small. I don’t like to wear myself out for reasons I can’t get excited about or when I can’t see the potential return on my investment of time. I also don’t like to leave things unfinished,…

It is hard to believe that July has come and gone, and that the summer season is officially coming to an end. In addition, my birthday month, August, has fast approached. This year, I will turn 29 years old. As I mentioned in my column…