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!…