My Darling Disability - a Column by Kendall Harvey

letter, conserving energy, independence, mobility aid, love, realist, normal, uncharted waters, intentional, Mother's Day, obstacle, moments, social media, walker, emotions, friends

Kendall is a wife and mother of two navigating life with Friedreich’s ataxia in Austin, Texas. She worked in marketing before “retiring” and becoming a stay-at-home-mom. She is an optimistic warrior fighting for a better future free of FA. She uses her column to help others process both the visible and invisible struggles that come with rare disease and disability.

I No Longer Let Fear of the Future Control My Life With FA

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…

Friedreich’s Ataxia Forces Me to Be a Spectator Mom

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…

Learning to Grow Through What I Go Through With FA

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…

Taking Another Friedreich’s Ataxia Setback in Stride

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…

I Overcame My Hesitancy to Use Mobility Aids, and You Can, Too

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,…

Acknowledging the Anniversary of My Diagnosis

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…

Slow and Steady Doesn’t Always Win the Race

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…

What My Recumbent Trike Means To Me

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…

A Letter to My Newly Diagnosed Self

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…

This 4th of July, I’m Redefining My Independence From FA

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.

Reminding Myself to Appreciate My Mobility Aid

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…

Heading Into an Uncharted Season With Friedreich’s Ataxia

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.

A Springtime Perspective on What FA Has Given Me

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…

How I Learned to Shine Rather Than Whine

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…

How I Respond to Pity as a Friedreich’s Ataxia Patient

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…

The FA Community Needs Your Help to Advance a Potential Treatment

The Friedreich’s ataxia (FA) community has been abuzz with excitement recently. The first two phases of a clinical trial sponsored by Reata Pharmaceuticals showed that the oral therapy omaveloxolone (RTA 408) is safe and led to improvements in some participating patients. However, the U.S. Food and Drug Administration (FDA)…

Calming the Friedreich’s Ataxia Storm

Lately, I have been falling into a funk easily. All of the “little things” that bother me about life as a Friedreich’s ataxia (FA) patient seemed insurmountably huge and sucked all of my drive away. I didn’t feel joyful or enthused about much of anything except sleeping. So, I…

Acknowledging My Disability Is Empowering

I was diagnosed with Friedreich’s ataxia (FA) in 2013. At that point, I was still pretty “normal.” I could still do almost everything except walk in high heels or perform well in sports. I was independent and capable. After seven years of symptom progression, I am now disabled. I am…

I’m Thankful for So Much, Even With Friedreich’s Ataxia

2020 has been a wild year. Thanks to the pandemic, growing civil unrest, and a tumultuous and pivotal presidential election, we are all leading a life we didn’t anticipate or plan for. Add in a progressively degenerative disease like Friedreich’s ataxia (FA), which doesn’t pause to consider any external…

Friedreich’s Ataxia Has Taught Me a Lot

Before I was diagnosed in 2013, I had never even heard of Friedreich’s ataxia. I learned a lot during the diagnostic process as we assessed the viability of possible diagnoses to rule out. For example, I never knew there was such a thing as gluten ataxia, but I…

The Importance of Being Your Own Advocate

When it comes to your health and future, you are your own best advocate. Only you know what you are feeling, so only you know what is or isn’t “normal” for you. When I was 23, I began noticing that my balance was different than it used to be. I…

After Quarantine, I Am ‘the Disabled Mom’ Again

Given all of the uncertainty and unpredictability in the world, it is fairly safe to say that nearly everyone has had moments of frustration, fear, and disappointment. Life in Texas is getting back to normal, and our routines are crazy. We went from being quarantined in our house for over…

Let’s ‘Walk and Roll’ With Our Mobility Devices

As my Friedreich’s ataxia (FA) symptoms progress, I become increasingly dependent on assistance to walk and to generally function productively. When my symptoms first started, I was able to get by holding onto someone for support. I would loop arms with my husband, parents, or friends for extra balance.