My Darling Disability - a Column by Kendall Harvey

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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.

Facing an Unknown Future as My FA Symptoms Progress

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…

FA Gives Me a New Reason to Throw Myself a Pity Party

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…

My Journey to Accepting My Responsibility With FA

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…

How FA Has Affected My Parenting Abilities

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.

My Main Friedreich’s Ataxia Symptoms, Visible and Not

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 Am Not My Disability

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…

I Have a Love-hate Relationship With My Mobility Aid

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…

Reminding Myself to Focus on the Positive

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…

An Open Letter to My Parents

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…

Friedreich’s Ataxia Requires Regular Updates

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…

Self-awareness Helps Me Navigate the Unexpected

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.

My FA Status Update: It’s Complicated

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…

The Balancing Act of Friedreich’s Ataxia

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.

New Year, New Me, and Same Friedreich’s Ataxia

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…

The Parallels Between Living With FA and Riding My Trike

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…

I’m Not Alone in Carrying the Burden of FA

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…

Recalculating the Path of My Life with Friedreich’s Ataxia

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…

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.