I’m frequently asked, “What happened to you?” The person asking usually points at my walker. What they’re really asking is, “Why are you using a walker?” People don’t tend to think of an obvious explanation as to why a healthy-looking, 34-year-old woman is using a walker, so they just ask…
My Darling Disability - a Column by Kendall Harvey
I often write about how important it is to have a strong village supporting you in life — not only for big things like parenting and disabilities caused by Friedreich’s ataxia (FA), but for all the ups and downs. I’m incredibly blessed to have several villages, including my…
I am the first to admit that I am a Disney fanatic. I have always loved the replicated ideas in Disney movies that friends and family can come together and discover strengths they never knew they had to help good triumph over evil. So, naturally, I love going to Disney…
Since the beginning of my journey with Friedreich’s ataxia (FA), worries about the future have plagued me. Would I have a future? What would it look like? As I learned more about FA, one word stood out: progressive. Everything boiled down to progressing symptoms: My balance and coordination…
It’s not uncommon for me to throw myself pity parties. Living with Friedreich’s ataxia (FA) is a constant battle. I have to choose to be strong every moment of every day and to keep fighting for independence, normalcy, safety, and hope. It’s exhausting to maintain the defensive wall that…
Throughout my journey with Friedreich’s ataxia (FA), I’ve wrestled with people calling me an inspiration. My feelings about it have changed and progressed just as quickly as my disabled body. When I was diagnosed with FA in 2013, my symptoms were relatively mild. The only things I couldn’t do…
Friedreich’s ataxia (FA) has changed so much about who I am. The physical effects have changed how I think, act, feel, and relate. Some of the changes are good, some are bad, and others are just complicated and hard. My parenting abilities have changed in all of the above ways.
One of my favorite books to read to my children is “What Do You Do With a Problem?” by Kobi Yamada. In it, the book’s main character suddenly finds himself facing a problem. He worries about “what would happen, and what could happen.” The more he worries about his…
Friedreich’s ataxia (FA) is a cruel diagnosis in several ways, and those ways seem to frequently morph, multiply, and momentarily take over my life. When I first started to learn about FA and my particular prognosis as a late-onset patient, I concentrated on the disruption to my walking ability…
I fell head over heels in love with my husband, Kyle, when I was 16 years old. By 18, I knew I would marry him. Then it came time for college, and though we didn’t go to the same university, our schools were only 20 minutes apart. We continued dating throughout…
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