My family and I went to Tulum, Mexico for Thanksgiving. We love to travel on Thanksgiving because, to us, the most important part of the holiday, and any holiday, really, is to spend time together. We tend to do all-inclusive beach resorts because it’s easy with kids and there is…
My Darling Disability - a Column by Kendall Harvey
After I was diagnosed with Friedreich’s ataxia (FA) in 2013, I was desperate to make a positive difference in my future with the disease. That search led me to rideATAXIA, a nationwide program of bike rides organized by the Friedreich’s Ataxia Research Alliance. People all around the U.S. work…
In my opinion, one of the worst things about living with a disability is feeling like a burden to others. Although I am the one going through the progressive degeneration of my abilities due to Friedreich’s ataxia (FA), it’s the people in my life who have to help carry…
When Friedreich’s ataxia (FA) came into my life in 2013, I thought all the hopes and dreams I’d held would be wiped out. I planned on being a fun and adventurous wife and, God-willing, a mother one day. Instead, I had to face the harsh reality that I would…
If life with Friedreich’s ataxia (FA) were charted through a GPS navigation system, it would constantly say “recalculating.” The relentlessly progressive nature of this disease affects all areas of my life, both expectedly and unexpectedly, bringing changes to both path and destination. Before my ankle break and reconstructive…
The first thing I experienced after my Friedreich’s ataxia (FA) diagnosis in 2013 was fear for my future. I remember reading words like “wheelchair-bound,” “terminal,” and “average life expectancy of 35.” That meant I had already lived more than half of my life. And while my first 25 years had…
Last weekend, I had an old experience in my new, disabled body. I went to a wedding. Most of my friends are in the “married and having babies” phase of life, so I haven’t been to a wedding in about four years — before I was dependent on a mobility…
A big part of my experience as a late-onset Friedreich’s ataxia (FA) patient is the disease’s impact on my role as a mom. My life is action-packed from the minute my busy 6-year-old son and 4-year-old daughter wake up until the minute they go to sleep. Toddler life doesn’t pause…
A few weeks ago, I fell and fractured my foot. The recovery process, thankfully, hasn’t been too painful. It has, however, been unexpectedly emotional. The truth is, I am not at all surprised that I fell. My Friedreich’s ataxia (FA) symptoms have been progressing quickly and felt insurmountable…
Despite using a walker 24/7, taking my clinical trial study treatment daily, getting ample rest, going to physical therapy weekly, working out daily, maintaining a balanced diet, and making safety modifications around my house, accidents happen. Especially with Friedreich’s ataxia (FA). We had friends over for dinner on the Sunday…
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