My Darling Disability - a Column by Kendall Harvey

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…

My healthy, rambunctious, and handsome 6-year-old son, Brooks, started his second flag football season this month. He scored two touchdowns this weekend, and I was beyond proud of him. He is such a hard worker who continually amazes me. Kendall Harvey with her son, Brooks, at…

Friedreich’s ataxia (FA) is a cruel, relentless, lifelong battle. It can make good days hard and bad days intolerable. When people tell me I am “inspiring” or ask how I remain so positive and happy in the face of FA, I am always baffled, and usually fumble my answer.

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)…

Over the holidays, we spent time with family that we don’t see regularly. I get so wrapped up in my own excitement to see my loved ones that I often forget that they haven’t seen me in a while. Or more specifically, they haven’t seen my Friedreich’s ataxia (FA) symptom…

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…

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…

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…

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…

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…

Special occasions make me introspective, as I have written before. On days when my Friedreich’s ataxia (FA) symptom progression is clearly noticeable, I take time to observe how my FA is affecting my current experience and measure it against previous years. This might seem masochistic or like I am…

I am beyond blessed to be “Mom” to my 6-year-old son, Brooks, and my 3-year-old daughter, Collins. They are wonderful, healthy, happy, energetic, smart, and funny. I feel a mix of emotions when I watch them run and play. I am so proud of them that it overwhelms…

One of the most difficult parts of using a mobility aid is unavoidably revealing that I am “not normal.” Since becoming dependent on my walker, I feel like I’m constantly broadcasting my most all-consuming source of fear and frustration to the world, regardless of my mood or the people…

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…

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.

When I find myself talking about the hard part of battling Friedreich’s ataxia (FA), the word I use most is “relentless.” FA is a rare, genetic occurrence that causes our cells to betray us with the progressive deterioration of dexterity, coordination, energy, and more. FA relentlessly worsens all of…

In my humble, nonmedical opinion, adrenaline is an amazingly complicated feature of the human body. It always seems to have tricky and unpredictable effects on my ever-changing Friedreich’s ataxia (FA) symptoms. Here’s why I think this: My late-onset FA began exhibiting symptoms that were worrisome enough that I began…

One of my favorite Friedreich’s ataxia (FA) quotes comes from Ron Bartek, co-founder and president of the Friedreich’s Ataxia Research Alliance (FARA). He said, “Acting alone, there is very little any of us can accomplish. Acting together, there is very little we will not accomplish!” Getting diagnosed with…

We’ve all heard the phrase “if these walls could talk.” We guess about the secret conversations that have taken place in a room and wonder what it would be like if the walls could tell us the story. What celebrations, collaborations, conspiracies, or moments of genius have those walls witnessed?…

They say there is no parenting handbook. There is no universal system or code that can set you up for foolproof success in raising your children to be confident and competent adults. As the mom of a nearly 6-year-old son and a 3-year-old daughter, I can certainly confirm that.

I was diagnosed with Friedreich’s ataxia (FA) on Aug. 19, 2013. Before that day, I had never even heard of FA, let alone expected to think about this progressive, degenerative, life-shortening disease in any capacity. So much has happened since that day in August 2013, and my seventh…

When I was a young girl making a list of my “dream guy” qualities, it was probably like everyone else’s. I wanted him to be kind, handsome, smart, funny, nice to his family, hard-working, and my best friend. I met my dream guy in high school, and Kyle and…

Last week, my husband and I decided it was time for a change of scenery from our COVID-19 quarantine in Austin, Texas, and we rented a beach house on the coast for a week. We had worked out all of the logistics and packed everything so we could remain…

I keep thinking about the saying “the grass is always greener on the other side.” This is usually thrown around when you wish for something. We get it set in our minds that if we could just cross the figurative fence, grass would be greener and life would be better.

With Friedreich’s ataxia (FA), I am used to the reality that my abilities are progressively deteriorating. I am losing coordination, dexterity, cellular energy, and strength every single day. I am all too aware of the ticking clock that has started the countdown on my ability to do just about…

Friederich’s ataxia (FA) has taught me a lot about intentionality. As an FA patient, I must be intentional both physically and emotionally to function at the capacity I desire. I used to take my physical abilities for granted before my FA symptoms started. I practiced hard at swimming,…

Friedreich’s ataxia (FA) is a cruel, degenerative genetic disease that attacks the central nervous system and deteriorates muscle coordination, strength, energy, and dexterity. It steals motor skills, making FA patients progressively more disabled. As an FA patient working my way through the symptom progression, I can tell you…

Friedreich’s ataxia (FA) is a progressively degenerative neurological disease. It targets almost every aspect of my body, especially coordination, balance, dexterity, and energy. My abilities are slowly diminishing, and my energy is constantly draining. With no approved treatments or cure, I have no tools to fight this inevitable deterioration of…

People respond to adversity in many different ways. You can rise to the challenge or crumble under its weight. You can push through or bail. Sometimes, you have to pick your battles and know when to fight or when to fold. That discernment takes maturity, strength, experience, and wisdom. Now…

I am an open book about most areas of my life. I’ll answer just about any question I am asked, even questions about my Friedreich’s ataxia (FA). FA is a rare, progressive, degenerative neuromuscular disease that few people have heard of, and even fewer are truly knowledgeable about.

Before I developed symptoms and then was diagnosed at 25 with Friedreich’s ataxia (FA), a progressive and degenerative disease, I was healthy, active, and able. Since my symptoms progressed, I no longer am “able,” at least not without assistance. Being disabled was not part of my plans for…

When you are the parent of kids ages 5 and 3, you read lots of fairy-tale books and watch countless Disney movies. You become part of the wonderful stories and see hardworking ladies becoming princesses, toys saving the day, friendships defying the odds, families overcoming adversity, romances growing stronger,…

Friedreich’s ataxia is a daunting, life-altering diagnosis. It changes every aspect of your life, especially as your disease progresses. It changes your ability to do the things that once came easily, and takes away your ability to do the things your peers can do without thinking twice. I…

Because of my Friedreich’s ataxia (FA), I use a walker as a mobility aid. The walker helps provide the stability that I can’t accomplish on my own, which helps prevent falls. My walker is with me wherever I go, so I am pretty well-known for being “the mom…

I am the proud mother to two children: my 5-year-old son and my nearly 3-year-old daughter. We just celebrated Mother’s Day last weekend. My family always does a wonderful job of making me feel loved and cherished. Annual celebratory events tend to turn me introspective. All weekend, I was…

The biggest things in our lives tend to occupy most of our brain space, such as family, significant others, friends, jobs, goals, pets, finances, plans, and so on. I have an additional big thing: Friedreich’s ataxia. Before I was diagnosed with FA in 2013, I was just like…

Part of the personal process of accepting my Friedreich’s ataxia diagnosis was deciding to do something proactive to try to secure a better, disease-free future for my fellow FA patients. An integral part of my efforts to make a real difference is the event rideATAXIA. rideATAXIA takes place…

I’m always alarmed when I notice the progression of my Friedreich’s ataxia (FA) symptoms, which highlight the harsh reality of my progressive neurological disease. Recently we got a new puppy, and training her has highlighted my FA progression. The last time I had a puppy was 2008. I got…

One of the harsh realities of life with Friedreich’s ataxia is falling. That was my first major symptom and a red flag. I knew something was wrong because I was falling more than I did previously, and it happened more frequently than the average person my age. I am participating…

I was an athlete until my mid-20s. I swam competitively for 14 years and was a cheerleader, a volleyball player, and an avid runner. My involvement in organized sports ended with my formal schooling. However, that didn’t stop me from keeping in shape. I went to the gym at least…

Christmas is always my favorite time of year. The holiday season is a busy time filled with traditions, but in my memories, December is a magical month full of joy. It’s hard not to notice the progression of my Friedreich’s ataxia (FA) symptoms during the holiday season. I have vivid…

As a Friedreich’s ataxia (FA) patient, I use a walker 95 percent of the time. FA interferes with my balance and coordination, so my walker prevents falls by providing something stable to hold on to. Rationally, adjusting to a mobility aid was easier than I thought. For me, it…

I wear many hats: I’m a wife, mom, daughter, sister, friend, writer, etc. The most exhausting, constant, and thankless hat I don is that of Friedreichs ataxia (FA) patient. This hat is too big, ugly, and dominating. I don’t feel like myself in it. It doesn’t feel right on…

Friedreich’s ataxia (FA) is a heavy diagnosis. It is a relentlessly cruel progressive disease without a treatment or cure. It’s a lot to process and handle, challenging my worldview and self-worth daily, hourly, and by the minute. I don’t want to have FA. I want to be “normal.”…

As a mom, I am obviously around kids all the time. But not just my own. I am around kids when I take my children to school, T-ball, church, play dates, restaurants with playgrounds, etc. I encounter countless kids each week. As an FA patient dependent on a mobility…

Earlier this year, I was extremely nervous about using my walker in public. Previously I had been able to “hide” the effects of my Friedreich’s ataxia (FA). I used shopping carts, friends, or strollers for stability. However, my FA progressed to the point that I needed more…

I’ve always been fascinated by stories featuring people who confront adversity by fighting against all odds to do extraordinary things. I’ve cried during “Extreme Makeover: Home Edition” or when Ellen DeGeneres has handed a life-changing check to a single parent or a disabled child. I become fascinated with their…

One of the scariest life changes a patient anticipates upon receiving a diagnosis of Friedreich’s ataxia is the use of a walking aid. For me, the thought of needing a device to get around in my day-to-day activities was soul crushing. I thought that it signified the…

I may not like my body, but I respect it. I often find myself explaining what I mean when I say “I hate my body.” So many people the world over say that all the time. We all have something. You might wish you were taller, that your nose…