In 2006, when I was an 18-year-old senior in high school, I went skiing with my boyfriend, Kyle, and his family in Telluride, Colorado. While we were there, Kyle and I talked about how fun it would be to take our hypothetical kids skiing one day. For as long as…
My Darling Disability - a Column by Kendall Harvey
My love language has always been words of affirmation. When someone gives me a genuine compliment or a little bit of encouragement, it has the power to change my mood and affect my whole day. Niceties lighten my load and put a spring in my step! On the other…
On Feb. 25, I attended the Fearless Mom conference at Lake Hills Church in Austin, Texas. There, I heard from Andy Andrews, the New York Times bestselling author of “The Traveler’s Gift,” “The Noticer,” and more. He said, “Perspective is how you choose to see things.
Learning to live within your physical limitations is challenging, especially when the list is constantly growing because of Friedreich’s ataxia (FA) and its ever-progressing symptoms. Lately, I’ve felt trapped in my body, imprisoned by the notion of “can’t.” I’ve been adapting to and planning my life around…
Last in a series. Read parts one and two. Since our family was complete and the pregnancy chapter of my life was done, I decided to reclaim my body and focus on physically fighting Friedreich’s ataxia (FA). In May 2018, I was communicating with a clinical…
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…
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…
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…
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…
Recent Posts
- Friedreich’s ataxia places heavy daily burden on patients, caregivers: Study
- Living with FA has taught me the difference between pain and suffering
- While living with FA, we get used to dealing with setbacks
- DT-216P2 shows early signs of benefit in Friedreich’s ataxia clinical trial
- I am taking a lesson from the Stoics and learning to let go of unrealistic goals