Second in a series. Read part one. In 2013, when I was 25 and newly diagnosed with Friedreich’s ataxia (FA), the only activities that were no longer safe for me were running and wearing high heels. That was all going to change, and my list of inabilities…
Poetry has always been pivotal, even crucial, to my life’s journey. Maybe that’s fitting for a guy diagnosed with a rare disease. In one survey from 2017, only about 12% of adults reported reading poetry in the last year. My disorder, Friedreich’s ataxia (FA), affects 1…
Occasionally, a random and seemingly minuscule thought sticks with me and eventually consumes my mind. I’ve never thought of myself as intelligent, but I have always been hopeful that I am getting wiser as I age. Some of that wisdom reveals that not everything is black or white, up…
First in a series. As I continue my journey with Friedreich’s ataxia (FA), I’m frequently asked questions such as: “How long have you been going to physical therapy?” “When did you start the clinical trial?” “How long have you depended on a walker?” It seems that people…
I’m not a fan of cold weather at all. Even when I could manage my legs with skis or a snowboard attached, I was never interested in being out in the snow. Of course, I enjoy the views of white-tipped trees and mountains, but I find they’re most enjoyable from…
What’s it like to be the only sibling out of three who doesn’t have a rare diagnosis? As I fumble my way through living with Friedreich’s ataxia (FA), I want to know what life looks like to my able-bodied sibling — my youngest sister, Mckenzie, who went by Kiki…
Many NFL fans around the world were shaken on Jan. 2, when Buffalo Bills safety Damar Hamlin collapsed on the field during a game against the Cincinnati Bengals. Since then, there has been much talk about a rare condition called commotio cordis, which is caused by trauma to…
The 2000 Darren Aronofsky film, “Requiem for a Dream,” doesn’t pull any punches as it shows the hellish descent of four people into a life of addiction, while the dreams they had for their lives become further and further out of reach. Although it’s mostly overlooked today and…
Happy New Year! I love to use January to reflect on the previous year and picture the possibilities for the new one. I won’t go so far as to set unattainable goals, but I do believe the changing of the calendar year is a lovely time to define some intentions…
I often write about perspective because I think it’s vitally important to intentionally maintain a healthy, well-rounded perspective when going through daily life with Friedreich’s ataxia (FA). FA is daunting and can quickly overwhelm us when we focus on the degenerative aspect of this lifelong genetic disease. We can…
A news article was recently shared and reshared across my social media platforms. It reported that a 9-year-old girl recently performed in an Oklahoma production of “The Nutcracker,” composed by Tchaikovsky. Typically, there’s nothing newsworthy about that. “The Nutcracker” almost always features children in its first…
One of the few lines I, and most others, remember from the movie “Forrest Gump” is, “Life was like a box of chocolates. You never know what you’re gonna get.” It often comes to mind when Christmas is approaching. Of course, the film doesn’t typically make any…
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