My Darling Disability - a Column by Kendall Harvey

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…

While Friedreich’s ataxia (FA) is a physical disease that happens to my body, I have noticed that my physical symptoms affect my mental outlook on life. I have always been the type of person that is part of the action. Whether I am the mastermind behind planning the fun or…

As the Fourth of July approaches, I’m thinking about the word “independence” a lot. At 32, my independence looks different than I’d once imagined. As a Friedreich’s ataxia (FA) patient, my body is progressively losing so many abilities. Most noticeable and problematic is my degenerating coordination and balance.

As a Friedreich’s ataxia (FA) patient well along in my symptom progression, I have a strained and emotional relationship with my mobility. Over the last three or so years, that same internal struggle has extended to my mobility aid. I am lucky that I lived a wonderfully carefree and…

Life with Friedreich’s ataxia (FA) requires constant adjustment and acceptance. I have to adjust to new symptoms regularly, whether they are temporary, like extra fatigue during a particularly busy season, or permanent, like the frustrating decrease in my walking speed. I have to adjust to safely accommodate these new…

I greatly admire people with an optimistic outlook on life, those who see the best possible outcome in all situations, point out silver linings during hard times, and encourage disheartened or apprehensive people. I used to be an optimist. Before I had any real hardship in my life, I didn’t…

I’m a big fan of holidays, parties, and any other reason to be festive. I love celebrating birthdays, beginnings and ends, milestones, anniversaries, and everything in between. I enjoy celebrations because they force me to focus on someone or something other than myself. They allow me to just be happy,…

The other day, I experienced a strange moment. As usual, at the end of my son’s baseball game, I had to just sit there waiting for help while everyone around me was busy packing up snacks, folding chairs, and gathering all of the equipment required for Little League spectators.

This week marks the end of the school year for many schools in my area, and therefore, the beginning of summer. I was recently chatting with a large group of friends, whose children are different ages and attend different schools, about everything we’ve survived during this unprecedentedly difficult school year.

As my Friedreich’s ataxia (FA) has progressed, I’ve had to make adjustments to accommodate new symptoms. Since my 2013 diagnosis, I’ve had to intentionally account for countless modifications every day — step by step and movement by movement. As part of my duties as an FA patient, I go…

As Mother’s Day approaches, I can’t help but pause to reflect on what this holiday means to me. I love celebrating my mother. Not only did she give me life, she gave me a wonderful life. She is a fundamental member of the village I need to get through…

Since Friedreich’s ataxia (FA) entered my life in 2013, I have spent a lot of time blaming it for getting in the way of the life I had planned. I would no longer be able to be the fun mom who did cannonball contests with her kids, or…

Life is made up of moments — big and small, good and bad, expected and unexpected. Some argue that life is defined by the big moments, while others say it is defined by the little ones. I believe that character is revealed through our reactions to all of these moments,…

Since my Friedreich’s ataxia (FA) diagnosis in 2013, I have chosen to openly share my journey with this progressive, degenerative disease. I share updates about both the physical and emotional changes in my daily life as dictated by FA, on social media, in columns, in text threads, and in…

Last weekend, a situation I dread as a mobility aid-dependent person happened: I drove to a store to run a quick errand, and when I opened the back of my SUV, my walker wasn’t there. It had been a busy Easter weekend with my family, filled with egg hunts, play…

Parenting is such a roller coaster. It can thrill and fulfill you, and in the same breath, overwhelm and scare you. Life with kids is full of precious, proud, and funny moments preceded or followed by moments of doubt, worry, research, and planning. It is bittersweet watching your children grow.

Friedreich’s ataxia (FA) changed every aspect of me — the emotional, the physical, the spiritual, and even my personality. Pre-FA Kendall was very different from FA Kendall. I can categorize my friends into those who knew me before my diagnosis and those who met me after. I am blessed to…

I am blessed to be Mom to my 6-year-old son, Brooks, and my 3-year-old daughter, Collins. I am also disabled. I use a walker because my Friedreich’s ataxia (FA) symptoms have progressed to the point that I can’t walk unassisted. The other day, while Brooks and Collins were playing…

I love springtime in Texas, and all that comes with it: baseball season, wildflowers, rodeo season, longer days, warmer sunshine, home projects, live music at local restaurants, and more. Everything feels happier and more vibrant. This year, springtime feels different. We had a historic and catastrophic snowstorm at the end…

I recently heard an interview with a local high school principal about the message he is sharing with his staff and students during these unprecedentedly hard times of COVID-19. In response to the pandemic, he said we can either “rise and whine or rise and shine.” How profound and…

The most unexpectedly disruptive symptom of my Friedreich’s ataxia (FA) has been fatigue. When I was diagnosed with FA in 2013, my initial research focused on the big symptoms, such as loss of balance and coordination, heart failure, loss of speech, and severe scoliosis. I read the word “fatigue”…

Now and then, I will have a “quiet spell” with my Friedreich’s ataxia (FA). I will notice that I haven’t fallen in a while. I haven’t noticed any new problematic symptoms develop. I will be relatively pain-free and somewhat energized. I will have some days, weeks, or even a month…

I admit I didn’t fully grasp the meaning of the African proverb “It takes a village to raise a child” until I became a mother. I bring it up because recently I saw a meme that said, “So, these villages that it takes to raise babies … do you…

The word “pity” has a pretty negative connotation. I don’t know many people who seek pity or want to be pitiable. I certainly don’t aim to make people feel sorrow for my misfortunes. Yet, as I’ve become increasingly disabled by Friedreich’s ataxia (FA) since publicly announcing my diagnosis seven years…