My Darling Disability - a Column by Kendall Harvey

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…

Through my column, I’ve become aware of two habits: I focus a lot on what I can or can’t do because of Friedreich’s ataxia (FA) and its associated disability, and I watch a lot of children’s movies. Both of these make me introspective, which forces me to…

When I’m frustrated about my Friedreich’s ataxia (FA) disabilities, life has a cruel tendency to remind me how very not “normal” I am. I continually find myself in circumstances that highlight my problems or force me to be a spectator or accept help. In those moments, I just want…

Most people know the Jackie DeShannon song that goes, “What the world needs now is love, sweet love/ It’s the only thing that there’s just too little of.” While I can think of a few more things that there’s just too little of, I wholeheartedly agree that the…

Life with a progressively degenerative neurological disease like Friedreich’s ataxia (FA) is a lot to handle. Not only is it incredibly frustrating and heartbreaking physically, but it is also relentlessly emotionally draining. In the decade that I’ve been living with FA, I think my most common complaint is…

It’s so easy to get down about the daily struggle of becoming progressively more disabled. Every single day, more of my abilities and independence slip away, and I rely more heavily on my village for support. Although this brings up a lot of hard, sad, heavy, difficult-to-process feelings, it…

As we approached the end of 2023, I didn’t feel like myself. I was overwhelmed by most things in my life, and I constantly felt inadequate. That made it easy for me to retreat, curse my circumstances, cancel plans, and spread my bad mood like a plague. I’d been functioning…

Actor and activist Michael J. Fox, 62, has been publicly battling Parkinson’s disease since 1998. Although Parkinson’s and my diagnosis of Friedreich’s ataxia (FA) are very different, they are both neurological diseases that affect your ability to function “normally,” cause pain and heartache, and are currently…

Before my Friedreich’s ataxia (FA) symptoms began, I was a healthy young adult with active hobbies, big plans, and an extroverted lifestyle. Now, after more than a decade with FA, I’ve seen so much change and many unexpected lessons. Some obvious physical struggles come along with a progressively…

As a mother of two young children, I have a lot of discussions about what’s fair. My son will whine about how “unfair” it is that his sister gets to watch a movie while he’s at baseball practice, and my daughter will complain about how it’s “unfair” that my…