The original date for this year’s rideATAXIA Dallas was March 28. This would have been my fourth year participating in the event. RideATAXIA is a day of bike treks for three skill levels — 50 miles, 25 miles, and 4…
Little Victories - a Column by Matthew Lafleur
I’ve been thinking a lot about identity lately. Who am I to myself? To others? Is Friedreich’s ataxia fundamental to who I am? Would I still be me without that rare diagnosis? Maybe I can only…
It doesn’t make sense to be this fragile, I thought, as my stomach dropped and I wanted to … fight? Punch a wall? Sob? I had no logical reason to be upset. Yet, when I overheard a longtime friend on a phone…
The day was cruelly beautiful. It was the first time I had ventured out of the house in over a month. I gazed out my van’s windows as tree branches and fields of grass whizzed by — vibrant, springtime green. The sky overhead was crisp…
About a year ago, I wrote a “Little Victories” column about the 2018 Netflix movie “Bird Box.” I was struck by its message that people with disabilities were best able to survive an apocalyptic scenario. Although the real-life coronavirus…
Columns
Choosing Our Own Identity
On an otherwise typical day of my self-quarantine, I careened to the side of my wheelchair and couldn’t stop. I wasn’t sure if the culprit was a coughing fit or an inability to correct my balance. After the initial thud and the…
Focusing on times of plenty and excess amid the COVID-19 pandemic seems foreign, or even rude. However, this calamity and all the pain it’s wrought cannot be all we see. Its prison walls are not opaque, just murky. We must look beyond them, look past…
I’m really fortunate. My life hasn’t undergone a drastic change even though I’ve rarely left my house in three weeks because of the COVID-19 pandemic. I work remotely and don’t drive, so I’m used to spending most of my time indoors. Since I am…
Long before COVID-19, a little girl named Eula walked to the end of the road to catch a school bus. It was 1935, so her bus ride to the small school in South Louisiana lacked the conveniences we take for granted today. For example, the…
It’s finally happened: the first outbreak within my parish (or “county” for you non-Louisiana folk) has been reported at the time of writing this column. While this pales in comparison to the number of outbreaks in Seattle, New York City, and even New…
Recent Posts
- A powerful performance from the past reminds me that ‘It’s OK’
- Use of skin, cheek cells may help monitor nomlabofusp effects in FA
- I found out who my real friends were after I was diagnosed with FA
- I’m living proactively with FA, but going with the flow, too
- Friedreich’s Ataxia Awareness Month to focus on education, community