As I was getting ready for breakfast a few mornings ago and listening to a shuffle of random songs, I recognized one that I hadn’t heard in years: “No Hard Feelings” by The Avett Brothers. For the first time in quite a while, the opening ran…
Columns
Battling a degenerative disease, especially one so rare that most people haven’t heard of it, can be a lonely journey. Even our closest friends and family members, who know us better than anyone, can only imagine and sympathize, as they don’t face the same physical struggles. Unless you have…
I rarely have the foresight to make a note about something I want to write about. Instead, I often sit and stare at a blank document. While sitting and staring, I replay the experiences I’ve had over recent weeks, trying to identify something interesting to dig into. Although I never…
The effects of Friedreich’s ataxia (FA) are vicious, relentless, widespread, and undeniable. FA uses my own body to slowly defeat me physically. The disease has taken away so much from me and given me a lot of hardship. I guess you could say that by many definitions, I am…
This too shall pass? The human experience is such a beautifully complicated journey. We all learn, grow, develop opinions, follow tendencies, change, adapt, and change some more. One common catalyst that shapes who we are is adversity. Everyone experiences adversity in one way, shape, or form, and that forever changes…
Not long ago, I had the pleasure of recording a Zoom session with fellow Friedreich’s Ataxia News columnist Kendall Harvey. Kendall wrote a column that inspired my podcast co-host, Kyle Bryant, and me to dig a little deeper and share Kendall’s perspective with our listeners. Kendall, Kyle, and…
Last week, a college buddy of mine, Max Harrington, filled in as my caregiver so that I could take a memorable trip to New York City. We were there to attend the annual MM+M Awards, which honor achievements in healthcare marketing and communications. I was joined by several…
In August 2013, months of questions, fears, and wild speculation came to a shocking conclusion. The changes to my body and abilities were explained: I had Friedreich’s ataxia (FA). The days, weeks, and months after receiving that diagnosis were some of the strangest of my life. As I…
Most of us have probably heard inspiring stories about “mom strength,” “superhuman strength,” or “hero strength.” This phenomenon, known as hysterical strength, refers to extraordinary displays of human strength, typically prompted by a life-threatening situation. As someone living with a degenerative condition called Friedreich’s ataxia (FA), I’ve spent…
Dear M&M’s, As a longtime fan of your candy, I want to say thank you. Your candy-coated chocolates have been a positive memory for me since before I could walk. The memory of my grandfather is forever tied to M&M’s because he gave me a brown bag of…
Advocacy can be a tricky, give-and-take process. So often those of us living with disabilities are faced with mixed emotions as we go about our daily activities. On the one hand, we’re told to be grateful for our remaining abilities and celebrated for making the most of our circumstances. On…
I’ve always been an emotional person. I feel everything with great depth and have a long memory, and while I love to celebrate the good in life, I tend to be consumed by the bad. I often take things personally and overthink them. At times, my emotions will seem to…
Recent Posts
- ‘Iron overload’ in mitochondria linked to heart damage in FA: Mouse study
- Getting the flu always makes my FA symptoms worse
- Yet another fall results in nose reconstruction surgery, part 2
- What it’s like on the hard days, when hope comes up short
- Skyclarys improves nerve cell function in new Friedreich’s ataxia lab study