My Darling Disability - a Column by Kendall Harvey

When I was 25 years old, on Aug. 19, 2013, my life forever changed. Together with my parents and husband, I got the answer we’d long sought about why my balance was progressively, noticeably, and inexplicably getting worse, despite being young, active, and otherwise healthy. A neurologist provided a…

Mid-August is generally recognized as back-to-school time for those with school-age children or who work in education. Our television programs are flooded with commercials for the latest and greatest in children’s fashion trends and the new must-have school supplies; our inboxes are full of promotions and sales; and there’s a…

Sometimes life with Friedreich’s ataxia (FA) can feel smooth, all things considered. Now and then, the accommodations my disabilities demand or the adaptations my symptom progression requires don’t seem that intrusive. I feel like I am, for the most part, able to take part in my life. My participation…

I’m 100% dependent on mobility aids due to my current stage of Friedreich’s ataxia (FA) progression. Given that, there’s never been a shortage of reactions by others to my various walkers and wheelchairs. In my personal experience, most toddler boys are fascinated by anything with wheels, so I’ve…

Being able to recognize your needs is a big sign of maturity. As a parent, I’ve had a front-row seat as my two young children, who have very different personalities, learn to recognize when something is “off” in their body. The Gottman Institute explains that anger is a secondary…

I’ve been struggling with my mental health lately. I’ve been grappling with feelings of inadequacy rooted in my Friedreich’s ataxia (FA) and subsequent inability to be an independent and effortless helper in my family, integrally or physically. I’ve felt like a burden, incapable of benefiting those around me —…

Friedreich’s ataxia (FA) can feel incredibly isolating. I’m fairly certain that rings true for most people going through life with a rare disease. Because FA is so rare, affecting only about 1 in 50,000 people in the U.S., few folks have even heard of it, much less understand…

Friedreich’s ataxia (FA) is hard. Its symptoms are far-reaching and its progression can feel relentless and inescapable. When you give it the power, FA can make good or mundane days feel bad, and make bad days feel like the worst. I notice that when I view life through the…

Last week, my family and I were in Destin, Florida, for my 10-year-old son’s baseball tournament. We intentionally built in a substantial amount of time to play on the beach, swim, enjoy fun restaurants, fish, and relax. His baseball team, coached by my husband, Kyle, has played together for four…

I’m a firm believer that life should be celebrated. I love decorating the house for holidays, birthdays, the first or last day of school, and anything else that provides my family with an excuse to get excited about life. It helps to break the monotony of our weekly routine and…

May is always a hectic month for my family. With school functions and class parties, youth sports, birthdays, Mother’s Day, and the approach of summer, life moves quickly this time of year. While part of me can hardly believe that the school year is already coming to a close for…

As I adapt to this new stage of my Friedreich’s ataxia (FA) symptom progression — being 99% dependent on seated mobility aids when I’m away from the comfort and adaptive safety measures I rely on at home — I’ve been given the rare opportunity to reshape my perspective yet…

Taking the good with the bad is a hard lesson to learn, but I’m realizing it’s imperative for approaching a healthy mindset when living with a steadily progressing disability. Friedreich’s ataxia (FA) is a daunting diagnosis to receive. In 2013, when I was diagnosed at the age of…

It’s been a wild and busy season for my family. Springtime in my household is usually eventful because it’s filled with things that we all enjoy, and most days, I wouldn’t have it any other way. From January through May, our calendar is typically chock-full of youth sports such as…

As I’ve often discussed, there is no handbook for living with a progressively degenerative condition like Friedreich’s ataxia (FA). However, there are good general rules of thumb that everyone can follow, such as safety first; if at first you don’t succeed, try and try again; tomorrow is a new…

As we navigate life, I think we’ve all felt, said, or at least heard the common saying “It’s always something.” I find myself saying that as a somewhat sarcastic self-challenge, meaning I still need to find a way to move forward, despite whatever new “something” there is to overcome.

This year, my family and I decided to take a road trip from Austin, Texas, to two national parks in New Mexico during my elementary-age children’s spring break. It involved about 20 hours of total car time. I’ve previously discussed how my Friedreich’s ataxia (FA) affects travel, including how…

There’s a lot that comes with the territory of having a visible disability, especially if you choose to live your life out loud rather than hide. I never imagined I’d have to make that choice until I was diagnosed with Friedreich’s ataxia (FA) in 2013. Back then, I understood…

So much of living with a progressive, lifelong disease like Friedreich’s ataxia (FA) is mentally processing and accepting the physical changes it brings. But with the widespread degeneration of my body and the resulting decline in my abilities, that can feel like an overwhelming task at times. Every night,…

At the beginning of my journey with Friedreich’s ataxia (FA), when my balance, coordination, and associated abilities were starting to decline, I felt like everyone was watching me. Because I’d decided to be vulnerable and openly share my journey with the condition, I felt that people expected to see…

What pops into your mind when you hear the word “strength”? I’m guessing that your answer will be based on the people around you. Anyone who was a child in the 1980s and ’90s will likely think about the Arnold Schwarzeneggers, Hulk Hogans, and Tom Cruises who filled the movies…

As my battle with Friedreich’s ataxia (FA) and my progressively diminishing physical abilities — primarily balance, coordination, dexterity, and energy — wages on relentlessly, I’m forced to adapt. While I’m used to depending on mobility aids, as I’ve done since February 2019, I often notice the reactions of others…

People often speak about the strength it must take to be a young person living with a progressive neurological disease. While I was diagnosed with Friedreich’s ataxia (FA) at age 25 and have found that yes, it takes every ounce of my strength sometimes simply to check off my…

I’m frequently asked how I handle the relentless progression of Friedreich’s ataxia (FA) with a smile on my face. My answer is simple: I don’t do it on my own. Without the support of all the wonderful people in my life, I’d still be that scared and confused statue…

Friedreich’s ataxia (FA) is progressively degenerative, and its reach is far and wide. What started as trouble staying on my feet during sand volleyball matches became an inability to walk unassisted 10 years later. With that progression, to say that FA has demanded adaptation from me would be an…

This week marks the seventh anniversary of writing for Friedreich’s Ataxia News under the banner of “My Darling Disability.” I’m humbled by the thought that my words have impacted even one life in the Friedreich’s ataxia (FA) and broader rare disease communities, and I plan to continue to honor…

As I begin 2025, all of my planning, expectations, projects, and so forth are through the lens of this awareness: This is the year I’ll start using a wheelchair full time. Knowing this shift was coming has been both helpful and hard. As my family and I fully embraced…

Life isn’t easy for anyone. Every person must trudge through hardship and struggles. Whether it’s a temporary sadness like illness or injury, seasonal hardships like a breakup or career setbacks, or even battling a life-long progressive illness such as Friedreich’s ataxia (FA), we all have to cope with unpleasant…

Have you ever found yourself in a rut? That can happen in most areas of life, such as cooking the same rotation of meals, rewatching your favorite movie or TV show, wearing the same outfits, and so on. Most of us are creatures of comfort, meaning we know what we…

In my journey with progressive Friedreich’s ataxia (FA), I battle a wide array of symptoms. While increasingly poor balance seems to be my most disruptive and frustrating symptom, it’s not the one that keeps me up at night. That would be peripheral neuropathy and the resulting nerve pain and…

I was diagnosed with Friedreich’s ataxia (FA) at the age of 25. What led me to that diagnosis was a quest for answers about why I was losing my athletic abilities. I was always very active, participating in cheerleading, swim team, softball, volleyball, track, and any other sport possible.

Life is full of teachable moments, which are opportunities to share one’s experience, wisdom, and advice. When I became a parent 10 years ago, I anticipated being confronted with countless such opportunities. But I recently found myself uniquely qualified for a particular teachable moment. Because of my Friedreich’s ataxia…

Guilt is a plight of the human condition that comes in many forms. I wrestle with it often. One common form, for example, is “mom guilt,” a topic that inspires countless books, articles, social media posts, texts among friends, and so on. I grapple with mom guilt almost daily.

As I’ve grown more physically disabled with Friedreich’s ataxia (FA), I’ve developed a new ability: knowing quickly how to address a stranger’s concerns about my disability. Whether it’s a curious child inquiring about my walker, an older person curious about that or other mobility aids, or a fellow…

I’ve been living with Friedreich’s ataxia (FA) since 2013, and I’ve been a mom since 2014. FA is progressively degenerative, and I’ve slowly become more disabled as my children have grown up. I began using a walker full time in February 2019, when my son,…

I recently wrote a column detailing my initial thoughts about the latest chapter in my Friedreich’s ataxia (FA) story: the process of accepting that I need to transition to a wheelchair. This shift is incredibly daunting, not only physically, but emotionally, logistically, and financially. Where do I start?…

The Friedreich’s ataxia (FA) transition I have dreaded for over a decade is approaching, and I am beyond overwhelmed. Despite my best efforts, adaptations, precautions, hopes, fears, and routines, I think the transition to a wheelchair is right around the corner. You might be asking, “Why do you…

I’ve heard and read so much about the topic of fear, yet I still wrestle every day with my own fears related to Friedreich’s ataxia (FA). I fear for both my present and my future. I’m afraid of falling. I’m scared I’ll be injured. I fear being judged,…

Like many Americans, I recently got caught up in the Netflix docuseries “America’s Sweethearts: Dallas Cowboys Cheerleaders.” I love it for several reasons, but mostly because I’m from Texas and have a cheerleading background. Before Friedreich’s ataxia (FA) forever changed my life when I was 25, in…

I’ve noticed that one-liner advice tends to stick with me, such as “Treat others how you want to be treated” or “If you don’t have anything nice to say, don’t say anything at all.” I’m sure I’m not alone in this. Since I’ve become a parent, I frequently catch myself…

As with most vacations, I knew I’d be in for a lot of walking when we took our children to Boston this summer. That meant I had to think about which mobility aid I should bring after considering safety, practicality, transportability, and access. I first visited Boston in 2011…

Stumbles, accidents, and falls come with the territory of many physical disabilities, especially ones like Friedreich’s ataxia (FA) that impair balance and coordination. Although my falls have become less frequent since I was outfitted with the necessary mobility aids, these incidents remain a fairly unavoidable reality in…

I knew in my bones that something wasn’t right with my body. I wanted nothing more than to find out what was happening, understand why it was happening, and learn what I could do to stop it. In 2013, I began my desperate search for answers. I had no idea…

I don’t know if it’s self-preservation or just my personality, but I’ve become quite the creature of habit. Lately I’ve noticed that when I’m separated from my habits, I either thrive or shut down. Breaking my routine and the comfort it provides occasionally reminds me that I’m more than…

Now that I’ve lived with Friedreich’s ataxia (FA) for a decade, I’ve found that I get into the habit of explaining my journey in bullet points to those who ask. I frequently describe my situation by saying such things as “I’m unfortunately fully dependent on my walker. It isn’t…

Part of living with Friedreich’s ataxia (FA) is battling relentless fatigue. If I feel energized at all, it is still a fraction of what I need to successfully tackle my day. Doing the simple, unavoidable, and monotonous tasks that all adults must do can quickly drain whatever…

Dear friends have asked me how I’m doing a few times over the past few weeks, specifically concerning my Friedreich’s ataxia (FA). Through their questions, I’ve realized that I’ve been so caught up in the busyness of parenting young children in springtime that my life has become more family-focused.

I recently had an unpleasant encounter with a stranger who was overflowing with pity regarding my disability. In the end, she questioned my abilities with what seemed to be judgment disguised as compassion. I had my 6-year-old daughter with me, so I was extremely intentional with my tone, body…

A recent struggle has been bothering me, even though, logically, it feels silly to get worked up about it. In the big scheme of things, it has no real impact on my life, yet it’s another reminder that I’m not in control of my body. My latest woe is about…

Friedreich’s ataxia (FA) is a huge part of my life, like it or not. My disability due to FA is one of the first things people think or wonder about when they meet me. As much as that reality breaks my heart, I can’t do much to disassociate…