My Darling Disability - a Column by Kendall Harvey

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…

When diagnosed with Friedreich’s ataxia, the first things people usually ask are: “What can I do about this? Is there a treatment or cure? Where do I sign up?” Then, we receive more bad news: Currently, there is no treatment or cure. But there is a ray of…

“Life isn’t fair.” “No one said this would be easy.” We have all heard these platitudes and we’ve all repeated them. And yes, there is truth in these well-worn phrases: Life is hard, messy, emotional, and unexpected, and it’s also predictable, inevitable, and complicated. But it can be…

At first, I resented having Friedreich’s ataxia (FA) because it hasn’t allowed me to be the mom I always imagined I would be. Now that I have a couple of years of parenting experience under my belt, I see some similarities between life with kids and life…

Describing a progressive genetic disease like Friedreich’s ataxia (FA) is difficult. It has a wide range of symptoms, most of which are unique to FA and not easily understood unless you have firsthand experience or a loved one with the condition. In this column, I will address some…

I grew up in a church-going family that was always involved in ministry. We spent at least three days a week at church. I had a sound knowledge of Christianity, the Bible, and what it meant to be a Christ follower. I felt invincible when I was close…

I have been working with my physical therapist, Kelli, for a year and a half. She is brilliant at what she does and has become a dear friend. I am so thankful to have her by my side as we fight Friedreich’s ataxia (FA) together. She was…

Third and final in a series. In a previous column, I discussed the tests I underwent to diagnose Friedreich’s ataxia. “Kendall, I was afraid that this might be the case: You have Friedreich’s ataxia.” My doctor looked as shellshocked as us. He studied Friedreich’s ataxia (FA) in his…

Second in a series. In a previous column, I discussed my active childhood and early signs that something wasn’t right. As the evidence began to pile up, I started to accept that someone who has been extremely active her entire life doesn’t suddenly become uncoordinated. I decided…

First in a series. From the time we are toddlers, we start dreaming about the future. We want to be firefighters, teachers, rock stars, race car drivers, or in my case, a zoologist. So many exciting possibilities exist, and we want to do them all. As we get…

I recently began participating in a 48-week, Phase 2 clinical trial for Friedreich’s ataxia. The way I understand it, the study’s investigational treatment is designed to make the cells in my body that are damaged by FA work more efficiently, or more normally. I’m hopeful that this can slow…

  The first time I ever heard of Friedreich’s ataxia was the day I was diagnosed with the disease in 2013 at the age of 25. To say I was in shock is an understatement. I was scared, overwhelmed, confused, angry, eager, and desperate. So, I am going to try…

Friedreich’s ataxia causes a wide array of symptoms. Every FA patient experiences the disease differently. For me, fatigue is a major symptom. Before I experienced FA, I thought I understood what “fatigued” meant — being really tired. Boy, was I wrong. Oxford Dictionary’s definition of tired is:…

Since my 2013 Friedreich’s ataxia diagnosis, the condition has consumed a part of every day. I was prepared for the physical changes that would come with FA, but the mental and emotional stress has surprised me. It is a factor in almost all of my…

In Friedreich’s ataxia (FA) care, we don’t really have treatment options. There are clinical trials taking place to work on treatments and hopefully one day, a cure. But until then, we are left at the mercy of this progressive, degenerative disease. Wow. That is heavy. And disheartening. The…

Editor’s note: This post includes images of a bone break that may be disturbing to readers. For some time now, I’ve needed to use a walker (or another mobility aid). My physical therapist, Kelli, has been encouraging me to use my rollator around the house. It is…

Almost everyone can point to moments in their lives dictated by the choice: fight or flight. By definition, the fight-or-flight response is a physiological reaction that occurs in response to a perceived harmful event, attack, or threat to survival. Friedreich’s ataxia (FA) patients have to choose to fight every single day.

Friedreich’s ataxia (FA) is a big, overwhelming disease. And with it being so rare, it can feel very isolating. My immediate family and I had never even heard of FA until my diagnosis in 2013. When we started telling family and friends about this disease, my aunt remembered seeing a…

As my Friedreich’s ataxia symptoms progress, so do my feelings and emotions about this complex disease. When diagnosed, I accepted it pretty quickly. I obviously knew that something was wrong with me, so defining it helped validate what was happening to my body. Don’t get me wrong, in my younger…

When I met my husband Kyle in high school at the age of 16, everything was perfect. We were perfect. We were madly in love with limitless possibilities ahead of us. The world was our oyster and we couldn’t wait to “grow up” and start living. We got engaged in…

When diagnosed with Friedreich’s ataxia (FA) at the age of 25, I was devastated. I thought I would have really poor quality of life and that all of the plans I had for my future would be impossible. One of the biggest emotional topics was parenthood. I thought that having…

My name is Kendall and I was diagnosed with Friedreich’s ataxia (FA) at the age of 25. I grew up in Katy, Texas, where my childhood was quite happy. I was always very active, participating in cheerleading, the swim team, volleyball, softball, track, and any other sport I could find to join.