A friend and I recently had an honest discussion, broaching topics like depression and the fear of death. I felt relieved afterward. My friend, however, presumed I was in despair, as most people seem to think that sad topics should only be discussed during difficult times. In the…
Columns
The topic of this column might be my ultimate excuse for not writing. Before I explain, I want to remind readers that I am an advocate for taking care of your health and prioritizing rest. I’m…
October is my favorite month. I love the feeling of new beginnings that comes with the crisp fall air. And I’m excited about two major Friedreich’s ataxia (FA) events that take place this month: rideATAXIA Philadelphia and the annual Friedreich’s Ataxia Symposium hosted by the Children’s Hospital of…
The View from My Standing Frame
As I type this column, I’m standing about 5 feet, 11 inches tall. Honestly, that’s a couple inches taller than my natural height. The platform for my feet on my new standing frame is raised, resulting in a slightly exaggerated height when I…
As I write this, I want nothing more than to go home and crawl into bed. Today has been longer and more exhausting than usual. I don’t write about my job often, but I did mention how significant the company is…
I often revisit a memory from eight years ago when my family and I were in a patient room at Johns Hopkins Hospital. I had undergone multiple tests, and as we waited anxiously for the results, the neurologist stepped into the room. He confirmed my diagnosis of Friedreich’s ataxia (FA),…
The Best Man Gets His Groove On
Being the best man at a wedding had its challenges. I am not comfortable being the center of attention, so it was not relaxing to give a speech at the rehearsal dinner or go down the aisle during the ceremony. But I have known since college…
Focus on Results, Not on Excuses
Once again, this weekly writing exercise is proving to be more beneficial than I ever imagined. In a sense, writing and posting my thoughts for the world to read is life-changing. It is a catalyst for tangible transformation of my habits and routines. I’m happy to…
Living with an invisible disability is not easy. Symptoms that cannot be seen are difficult for outsiders to understand. Friedreich’s ataxia (FA) entails neurological issues, heart conditions, fatigue, and chronic pain. Some patients may use mobility aids full time, part time, or not at all. Each person with…
“The Zeego Tales” track the wonders of my new life with my service dog, Zeego. The sound of rushing wind and the rumbling of turbines intensified as I felt the front end of the plane turn skyward and we left the ground. The plane departed at…
I’m currently beating myself up a little, mentally speaking. I’m finding it hard to swallow my own “no excuses” medicine. I’m sure you already know that preaching the “no excuses” mantra is much easier than putting it into practice.
I read an article recently in The Philadelphia Inquirer that affected me on a personal level and left an impression. It addresses the poor condition of sidewalks and curb ramps in Philadelphia, and the difficulty they pose to people with limited mobility. The article describes the city’s failure to…
Recent Posts
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- Confronting the illusion of choice with Friedreich’s ataxia
- Mouse model shows iron imbalance in FA varies by tissue and age: Study
- How I field the question, ‘Why are you in a wheelchair?’