Columns

As many people living with Friedreich’s ataxia (FA) can tell you, our diminishing handwriting, balancing, speaking, and walking abilities are no laughing matter. Or are they? My sense of humor is a way of escaping my stark reality as a Friedreich’s…

Since Friedreich’s ataxia (FA) entered my life in 2013, I have spent a lot of time blaming it for getting in the way of the life I had planned. I would no longer be able to be the fun mom who did cannonball contests with her kids, or…

I’m not proud of this, but I often avoid looking strangers in the eye. An example is when I pass panhandlers or other people asking for money while I’m riding in my van. It doesn’t matter if it’s someone with a sign asking for a job, food, or…

There will always be more to learn in this life. No matter how many years I live or how many experiences I have, I can’t possibly know it all. This is surprising to some degree, because when I was younger, I thought all almost-40-year-olds had everything figured out.

Hello, friends! I hope you are enjoying some fresh spring air and the sun is shining down on you. Even if it’s dark and rainy, you are worthy of all the beautiful things, and I am so happy to welcome you back. My son Noah was diagnosed a few years…

Life is made up of moments — big and small, good and bad, expected and unexpected. Some argue that life is defined by the big moments, while others say it is defined by the little ones. I believe that character is revealed through our reactions to all of these moments,…

I always try to bet on dark horses. On quiet summer nights near my house, I can hear the buzzer of the nearby racetrack signaling the start and finish of horse races. I swear sometimes I can even hear the gates clanging open, and the rapid-fire…

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.