An underlying principle keeps revealing itself to me through many different things. I’ve heard the principle said in multiple ways, namely phrases such as “stay the course,” “stay on mission,” and “remain focused.” There are many ways of saying it but the message essentially supports one…
Columns
Seizing What I Can from Life
Friedreich’s ataxia (FA) is a progressively degenerative neurological disease. It targets almost every aspect of my body, especially coordination, balance, dexterity, and energy. My abilities are slowly diminishing, and my energy is constantly draining. With no approved treatments or cure, I have no tools to fight this inevitable deterioration of…
“Forty needles! I think that’s a record over here!” I was lying on my stomach on the adjustable table as my physical therapist said this with a laughable mix of pride and wonder. One of the treatments he uses is dry needling. Neither…
It’s been a while since I have had the courage to write a column. I don’t want to seem melodramatic, but the vulnerability of sharing about parenting a child with FA wipes me out emotionally, and I tend to be down for a few days afterward. Writing about it…
People respond to adversity in many different ways. You can rise to the challenge or crumble under its weight. You can push through or bail. Sometimes, you have to pick your battles and know when to fight or when to fold. That discernment takes maturity, strength, experience, and wisdom. Now…
“Look at the mirror on the wall. Can you tell me what letters you see?” I sat there in the darkened optometrist’s office with my face pressed forward into a strange head-shaped contraption. I looked up at the mirror and saw the reflection of a bright…
A year ago, I wrote about the yearly calendar’s halfway point being a great time to check in on my annual goals and the routines I employ to accomplish them. Although we are halfway through 2020, I’m sure I’m not the only one…
I am an open book about most areas of my life. I’ll answer just about any question I am asked, even questions about my Friedreich’s ataxia (FA). FA is a rare, progressive, degenerative neuromuscular disease that few people have heard of, and even fewer are truly knowledgeable about.
The clanky metallic sounds are what I remember most. Pap-pap! And then a small sound of straining as someone’s body weight shifts as they are dragged forward. Whenever that sound echoed down the high school hallways, I knew what it…
In my previous column, I announced I was becoming a certified personal trainer. I understand there may be curiosity around my decision. I also want to clarify things for future clients and for those who are curious about my approach. I hope to address some of those questions and…
Before I developed symptoms and then was diagnosed at 25 with Friedreich’s ataxia (FA), a progressive and degenerative disease, I was healthy, active, and able. Since my symptoms progressed, I no longer am “able,” at least not without assistance. Being disabled was not part of my plans for…
Rolling Toward Empathy
About a decade ago, I read a local news report about a pizzeria being taken to court because it was inaccessible to people with disabilities. Opened in 1990, this house-turned-business sat directly across the street from my college campus. I read about the…
Recent Posts
- 17-year-old advocate shares her NMOSD story to raise awareness
- The forced adversity of Friedreich’s ataxia can lead to personal growth
- 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?’