My Darling Disability - a Column by Kendall Harvey

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…

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…

One of the most emotional and heartbreaking obstacles to overcome with a progressively degenerative disease like Friedreich’s ataxia (FA) is the use of mobility aids. I know the struggles firsthand because I’ve been entirely dependent on a walker for nearly three years. I’m very open about my journey with FA,…

Historically, Aug. 19 is a hard day for me. That’s the day in 2013 when I was blindsided by a Friedreich’s ataxia (FA) diagnosis.  My emotional journey of advocating for myself to find answers to seemingly random neurological symptoms had reached a difficult, unexpected, and dramatic turning point. I was…

Last week, my family and I went to the beach with our neighbors for a fun end-of-summer getaway. We stayed in a precious beachside rental that had a room full of bunk beds for the kids, plus everything else we could need. It was wonderful. The only problem was that…

One of the most frustrating effects of the progression of my Friedreich’s ataxia (FA) symptoms is how slow I’ve become lately. Physically, I do everything more slowly. Not only am I slower than I used to be, but also I am slower than everyone in my life. I talk more…

The word “hope” has been woven through many of my conversations lately, especially in the last week. I’m participating in a clinical trial, and I had my first in-person visit in nearly two years. I am supposed to go every six months, but flying across the country for an…

As a Friedreich’s ataxia (FA) patient, my options for exercise are limited. I can’t go to kickboxing or step classes with my friends, and I can’t go for a run or a hike. While many popular types of exercise, such as dancing, high-intensity interval training, and the bar workout, are…

Dear 2013 Kendall, Your world was just rocked and turned upside down. I know you feel like your future is an impossibility now that Friedreich’s ataxia (FA) has clouded your blue skies. I am here to tell you that yes, that future is gone. But it doesn’t mean you have…