Columns

I’ve been thinking a lot about whodunits lately, those stories with a masked villain who is finally revealed at the end of the tale. From slasher flicks to “Scooby-Doo” episodes, much of the suspense and spookiness lies in the mystery. The veiled monsters are…

I recently adopted a mixed beagle and Chihuahua named Albert. He is 10 years old, and I got him from a local animal care organization. During the process of adopting him, I was excited and looked forward to my new position as a dog mom.

When I was a young girl making a list of my “dream guy” qualities, it was probably like everyone else’s. I wanted him to be kind, handsome, smart, funny, nice to his family, hard-working, and my best friend. I met my dream guy in high school, and Kyle and…

Aug. 7 was a big day. Some groundbreaking news came out in the rare disease world: the U.S. Food and Drug Administration approved a new treatment for spinal muscular atrophy (SMA) that will be available to patients soon. What is…

The year 2020 will mark stories of history for generations to come. This year continues to call attention to areas of opportunity, shortcomings, and perhaps failures across many areas of life — from global economic concerns to neighborhood-specific best practices.  Of all we can and will…

One of most difficult aspects of Friedreich’s ataxia (FA) is thinking I don’t deserve any good that comes my way. Being diagnosed with a progressive illness convinced my brain that I would never have the life I imagined. It wouldn’t be worth it to figure things out…

Last week, my husband and I decided it was time for a change of scenery from our COVID-19 quarantine in Austin, Texas, and we rented a beach house on the coast for a week. We had worked out all of the logistics and packed everything so we could remain…

I’m not patient. Not at all.  I think it’s funny that people with debilitating health conditions often are seen as being patient and tolerant. We seem to be superhuman, persistent, and serene in our daily activities, no matter how long they take or how much we…

I keep thinking about the saying “the grass is always greener on the other side.” This is usually thrown around when you wish for something. We get it set in our minds that if we could just cross the figurative fence, grass would be greener and life would be better.

I remember getting to the pool early one summer morning before swimming lessons began. I wasn’t a swim teacher per se; I was more of a teacher’s assistant. The head instructor had me and the instructors my age do a lifeguard training exercise.

With Friedreich’s ataxia (FA), I am used to the reality that my abilities are progressively deteriorating. I am losing coordination, dexterity, cellular energy, and strength every single day. I am all too aware of the ticking clock that has started the countdown on my ability to do just about…

“Well look at that,” the doctor remarked, obviously impressed.  The wonder in his voice made me grin a little bit. Any positive physical change with progressive Friedreich’s ataxia is a little victory.  I had just swung my legs off the…