Kendall Harvey,  —

What do election years and Friedreich’s ataxia (FA) have in common? A lot more than you’d think. Let me explain. As I’m writing this column, it’s midterms election week, so it’s very front of mind, just as FA has been for me for the last nine years. This got…

Battling a degenerative disease, especially one so rare that most people haven’t heard of it, can be a lonely journey. Even our closest friends and family members, who know us better than anyone, can only imagine and sympathize, as they don’t face the same physical struggles. Unless you have…

The effects of Friedreich’s ataxia (FA) are vicious, relentless, widespread, and undeniable. FA uses my own body to slowly defeat me physically. The disease has taken away so much from me and given me a lot of hardship. I guess you could say that by many definitions, I am…

This too shall pass? The human experience is such a beautifully complicated journey. We all learn, grow, develop opinions, follow tendencies, change, adapt, and change some more. One common catalyst that shapes who we are is adversity. Everyone experiences adversity in one way, shape, or form, and that forever changes…

In August 2013, months of questions, fears, and wild speculation came to a shocking conclusion. The changes to my body and abilities were explained: I had Friedreich’s ataxia (FA). The days, weeks, and months after receiving that diagnosis were some of the strangest of my life. As I…

Most of us have probably heard inspiring stories about “mom strength,” “superhuman strength,” or “hero strength.” This phenomenon, known as hysterical strength, refers to extraordinary displays of human strength, typically prompted by a life-threatening situation. As someone living with a degenerative condition called Friedreich’s ataxia (FA), I’ve spent…

I’ve always been an emotional person. I feel everything with great depth and have a long memory, and while I love to celebrate the good in life, I tend to be consumed by the bad. I often take things personally and overthink them. At times, my emotions will seem to…

I share my journey with Friedreich’s ataxia (FA) openly, and I know that my sharing, coupled with my highly visible walker, puts a spotlight on my disability. However, I’ve had some acquaintances who immediately approach me and bring up my disability every time our paths cross —…

I grew up in Katy, Texas, and in keeping with the Texan stereotype, I was a cheerleader who married my high school sweetheart, who also happened to be the captain of the football team. Together, we have a 7-year-old son, Brooks, and a 5-year-old daughter, Collins. We are raising…

It’s no secret that I struggle both mentally and physically with the relentlessly progressive nature of Friedreich’s ataxia (FA). Just when I think I’ve got the hang of coping with advancing symptoms and the adaptations they require, new challenges enter my path. I feel like I’m constantly putting…

Many have read Nathaniel Hawthorne’s novel “The Scarlet Letter,” but in case you haven’t, the main character, Hester, is forced to live her life as an outcast with the scarlet letter “A,” for “adulterer,” on her chest to atone for her sin. The novel follows her life as an ostracized…

One of American poet Robert Frost’s famous quotes is, “In three words I can sum up everything I’ve learned about life: it goes on.” As I approach the ninth anniversary of my Friedreich’s ataxia (FA) diagnosis, I can say I wholeheartedly agree. Amid FA symptom progression, the ongoing nature…

I recently binged four seasons of the television series “The Handmaid’s Tale.” I will spare you my enthusiastically detailed summary except for this: The main character, June Osborne, is a prisoner in the household of a commander and his wife in Gilead, a totalitarian society in what used…

When you’re a parent of preschool-age children, there’s a large focus on teaching the concept of opposites. Big and small, nice and mean, wet and dry, strong and weak, happy and sad, and so on. The illustrations usually make young children giggle, but the idea also teaches them to…

When you live under the banner of a degenerative disease such as Friedreich’s ataxia (FA), you become well acquainted with fear. You fear what your body has in store for you tomorrow, next month, next year, and the years after that. You fear falling or accidentally doing something that…

Friedreich’s ataxia (FA) is incredibly rare. So rare, in fact, that I’d never even heard of it before I was diagnosed with it in 2013. Getting that rare, 1-in-50,000-people diagnosis (given to an estimated 2,500 people in the United States) has had a huge impact on my…

Life with Friedreich’s ataxia (FA) can feel daunting as we face hardships, struggles, and countless tribulations. Most FA patients I know have a positive attitude and try to keep moving forward despite what FA throws in our paths. We don’t necessarily like our diagnosis, nor do we like…

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…

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…

During the Fearless Mom 2022 conference in February, I learned about an interesting phenomenon from keynote speaker, clinical psychologist, and consultant Dr. Robi Sonderegger. According to Sonderegger, the English language is one of the few languages in which we describe our feelings or our pathology as a state…

Have you heard the expression that “There’s a fine line between love and hate”? The idea is that there’s so much passion required for every all-consuming emotion that things could easily tip from love to hate, and vice versa, when all of those wild emotions are running free. If this…

Focusing on the negative aspects of life always seems to come more naturally than focusing on the positive ones. Whether we like it or not, bad things have a way of taking center stage and eclipsing the good, especially when it’s something significant like becoming progressively disabled. At 34, I’ve…

It’s one thing to go through a hardship yourself, but it’s another thing entirely to watch a hardship happen to a loved one. As a parent myself, I know how parents feel any pain and sadness that their children endure. In fact, a child’s pain can almost seem greater for…

During actor André De Shields’ Tony Awards acceptance speech in 2019, he shared his three rules for his longevity: “One, surround yourself with people whose eyes light up when they see you coming. Two, slowly is the fastest way to get to where you want to be. And three,…

There is no single way to handle challenges in life. What works for me might not work for you. And what worked for you last time might not work for you this time. I think the only consistency we can count on when confronted with challenges…

Friedreich’s ataxia (FA) is not easy to navigate. Like any lifelong journey, it has difficult seasons, roadblocks, and the occasional smooth path when you get to set your cruise control. It has unexpected detours, expenses, learning opportunities, and challenges, resulting in a collection of memories and experiences. Unfortunately, my…

Most of us have heard about the five love languages described by author Gary Chapman. Love languages are the ways that we show and receive love, and the concept is commonly used in relationship or premarital counseling. For example, I show love through acts of service, and I receive…

Since I began my Friedreich’s ataxia (FA) journey in 2013, expectations have become a huge part of my life. Before my diagnosis, I had never even heard of FA, let alone expected to engage in a lifelong battle against it. I felt anchorless in a raging sea of uncertainty.

I had a wonderful childhood, yet I knew how hard my parents worked to make that happen. So, when I became a grown-up, I felt like I had fairly realistic expectations. I planned on working hard and living a fulfilling life, raising a family, and building a fun village…

I often think about the pity that is expressed to people with disabilities — people like me. I am an obviously disabled young woman, and my Friedreich’s ataxia (FA) is on full display, making me a regular recipient of unsolicited pity. Some people stop and stare, some whisper to…

I saw a meme a couple of months ago that said, “I can either do a morning activity or an evening activity — I am too tired for both.” I shared it with my friends, and we giggled because it was so true for all of us weary, overburdened mothers.

There is a common saying at New Year’s as people make their resolutions: “New year, new me!” The beginning of a calendar year carries an air of possibility. It is an exciting chance to reflect on the previous year and to plan to make the new year even better. It…

Those who have been following my column about my journey through life with Friedreich’s ataxia (FA) have probably noticed that I try to bring every entry to a positive conclusion. No matter how bleak, trivial, heavy, or uplifting my topic seems to be, I try to wrap it up in…

I’ve said it before and I’ll say it again: Life with the progressively degenerative disease, Friederich’s ataxia (FA), is hard. Having FA means adapting to relentless disease progression that sneaks into all the parts of my life — physical, mental, and emotional — and complicates them.

It’s December, a month that means so many things to so many people. For me, it means family time, festive fun with friends, traditions, busyness, beautiful twinkling lights, Christmas movies, the miracle of the extravagant grace and love of God, Christmas music — and presents!…

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…

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…