My Darling Disability - a Column by Kendall Harvey

About three years after my Friedreich’s ataxia (FA) diagnosis, the symptoms started to interfere with my productivity and safety. I acquired a disability parking placard and used it only when there were a lot of open accessible spots. One day, I was out running errands with my son,…

I think just about everyone has been told at some point in their lives to be grateful for what they have, to not wish the day away, and that people always want what they don’t have. On the other hand, we are also told that we were meant for more,…

When I was a 25-year-old newlywed thinking about starting a family, the words “you have Friedreich’s ataxia” seemed like the worst life sentence imaginable, which would be followed by a painful and premature end. I was devastated. Now that I’ve lived with a Friedreich’s ataxia (FA) diagnosis for…

In 2006, when I was an 18-year-old senior in high school, I went skiing with my boyfriend, Kyle, and his family in Telluride, Colorado. While we were there, Kyle and I talked about how fun it would be to take our hypothetical kids skiing one day. For as long as…

My love language has always been words of affirmation. When someone gives me a genuine compliment or a little bit of encouragement, it has the power to change my mood and affect my whole day. Niceties lighten my load and put a spring in my step! On the other…

On Feb. 25, I attended the Fearless Mom conference at Lake Hills Church in Austin, Texas. There, I heard from Andy Andrews, the New York Times bestselling author of “The Traveler’s Gift,” “The Noticer,” and more. He said, “Perspective is how you choose to see things.

Learning to live within your physical limitations is challenging, especially when the list is constantly growing because of Friedreich’s ataxia (FA) and its ever-progressing symptoms. Lately, I’ve felt trapped in my body, imprisoned by the notion of “can’t.” I’ve been adapting to and planning my life around…

Last in a series. Read parts one and two. Since our family was complete and the pregnancy chapter of my life was done, I decided to reclaim my body and focus on physically fighting Friedreich’s ataxia (FA). In May 2018, I was communicating with a clinical…

Second in a series. Read part one. In 2013, when I was 25 and newly diagnosed with Friedreich’s ataxia (FA), the only activities that were no longer safe for me were running and wearing high heels. That was all going to change, and my list of inabilities…

First in a series. As I continue my journey with Friedreich’s ataxia (FA), I’m frequently asked questions such as: “How long have you been going to physical therapy?” “When did you start the clinical trial?” “How long have you depended on a walker?” It seems that people…

Many NFL fans around the world were shaken on Jan. 2, when Buffalo Bills safety Damar Hamlin collapsed on the field during a game against the Cincinnati Bengals. Since then, there has been much talk about a rare condition called commotio cordis, which is caused by trauma to…

Happy New Year! I love to use January to reflect on the previous year and picture the possibilities for the new one. I won’t go so far as to set unattainable goals, but I do believe the changing of the calendar year is a lovely time to define some intentions…

I often write about perspective because I think it’s vitally important to intentionally maintain a healthy, well-rounded perspective when going through daily life with Friedreich’s ataxia (FA). FA is daunting and can quickly overwhelm us when we focus on the degenerative aspect of this lifelong genetic disease. We can…

I am the proud mother of two darling young children. My son, Brooks, is 8, and my daughter, Collins, is 5. To make December even more magical, they still believe in Santa Claus. I was recently laughing with a friend as we discussed the ridiculous lengths we have gone…

Hardships are a part of the human experience. Everyone has gone through or is going through something they’d rather not face. We don’t get to choose the struggles we encounter; we can only choose how we respond. For many people, that involves sharing — talking to friends and loved ones…

With Thanksgiving approaching, my family and I have been talking about what we’re thankful for. My 5-year-old daughter, Collins, is thankful for adorable things like her cat named Banana, our swimming pool, her school playground, horses, and of course, her brother, Mommy, and Daddy. My 8-year-old son, Brooks, is thankful…

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…