Columns

Since my Friedreich’s ataxia (FA) diagnosis in 2013, I have chosen to openly share my journey with this progressive, degenerative disease. I share updates about both the physical and emotional changes in my daily life as dictated by FA, on social media, in columns, in text threads, and in…

I really enjoy the times when I can almost forget about the constant degeneration of my body due to Friedreich’s ataxia (FA). But every so often, I fall out of my wheelchair, notice that my speech is especially muddled, or face another stark reminder I can’t ignore: that my FA symptoms are worsening.

The light at the end of the tunnel can seem elusive and bright at the same time. Perhaps it’s a tug of war or a bit of yin and yang activity, but it’s ever-changing, especially in relation to living with a rare, progressive disease like Friedreich’s…

Last weekend, a situation I dread as a mobility aid-dependent person happened: I drove to a store to run a quick errand, and when I opened the back of my SUV, my walker wasn’t there. It had been a busy Easter weekend with my family, filled with egg hunts, play…

Parenting is such a roller coaster. It can thrill and fulfill you, and in the same breath, overwhelm and scare you. Life with kids is full of precious, proud, and funny moments preceded or followed by moments of doubt, worry, research, and planning. It is bittersweet watching your children grow.

I’m approaching what can easily be labeled the midpoint of life for the so-called average person. Of course, such averages rarely take rare disease into account. But even without the progression of Friedreich’s ataxia (FA), living to (almost) 40 is no easy task. I mean, just think about…

Friedreich’s ataxia (FA) changed every aspect of me — the emotional, the physical, the spiritual, and even my personality. Pre-FA Kendall was very different from FA Kendall. I can categorize my friends into those who knew me before my diagnosis and those who met me after. I am blessed to…

I’ve never thought of myself as especially strong, or as someone who could identify with a warrior’s personality. Because I face the progressively debilitating disorder Friedreich’s ataxia, I sadly realized that my physical strength, like the rest of my capabilities, will dwindle over time much more quickly than…

Religion and spirituality have always been tricky subjects for me. I was raised in a traditional Italian and Catholic household where baptisms, communions, confirmations, and the rest of the sacraments were highly celebrated. I was pushed to attend Mass every Sunday and holiday, and to volunteer or serve…

Welcome back! I wish we could have this conversation face-to-face over a cup of coffee. For now, we’ll have to settle for this virtual space, where we can connect in a different, but hopefully meaningful, way. As you’ve probably done, I’ve often said in the last year, “I can’t wait…

I am blessed to be Mom to my 6-year-old son, Brooks, and my 3-year-old daughter, Collins. I am also disabled. I use a walker because my Friedreich’s ataxia (FA) symptoms have progressed to the point that I can’t walk unassisted. The other day, while Brooks and Collins were playing…

“I never thought I’d see this,” I thought, looking at the surreal scene outside my van’s window. Snow-covered yards and roofs on familiar houses in my hometown were remarkable to me, although living with Friedreich’s ataxia (FA), I should probably be used to the unexpected by now. …