Columns

Through my column, I’ve become aware of two habits: I focus a lot on what I can or can’t do because of Friedreich’s ataxia (FA) and its associated disability, and I watch a lot of children’s movies. Both of these make me introspective, which forces me to…

Though I love to travel, I sometimes struggle with maps. I often need clear clues and landmarks to prevent my brain from going to mush. I benefit from talking through the directions with a traveling companion. I stare at the “You are here” diagrams found at various destinations and need…

When I’m frustrated about my Friedreich’s ataxia (FA) disabilities, life has a cruel tendency to remind me how very not “normal” I am. I continually find myself in circumstances that highlight my problems or force me to be a spectator or accept help. In those moments, I just want…

My interest was piqued this month when I read about positive Phase 2 trial results for a drug from Larimar Therapeutics, as it’s a clinical trial that I’ve been closely following. This potential treatment for my rare disorder, Friedeich’s ataxia (FA), is especially exciting for me because it…

Imagine standing on top of Mount Everest screaming “Help!,” but the wind is so fierce that your words blow back and no one hears you. Could people do anything if they did? That’s what being diagnosed with my rare disease, Friedreich’s ataxia (FA), felt like. My parents and…

I’m just a few weeks from crossing the five-year mark since writing my first column for Friedreich’s Ataxia News. With that milestone approaching, I went back and read some of my old columns. Many made me chuckle, bringing fond memories to the front of my mind, while…

Most people know the Jackie DeShannon song that goes, “What the world needs now is love, sweet love/ It’s the only thing that there’s just too little of.” While I can think of a few more things that there’s just too little of, I wholeheartedly agree that the…

Today I fell getting out of bed and into my wheelchair. Don’t worry, reader, I didn’t get hurt. It was a slow-motion fall. However, I was then stuck on the floor. Finally, after an hour of trying to get up, I called my husband, Dave. He works locally and is…

What do my email inbox and toothpaste have in common? They both have started to wear me out. I always prided myself on my tenacity and work ethic. I knew how to hustle, get things done, organize, streamline, and then reassess to do it better next time. Then Friedreich’s…

Life with a progressively degenerative neurological disease like Friedreich’s ataxia (FA) is a lot to handle. Not only is it incredibly frustrating and heartbreaking physically, but it is also relentlessly emotionally draining. In the decade that I’ve been living with FA, I think my most common complaint is…

I am often asked a familiar but bothersome question: “What do you do all day?” When I hear this question, I instantly feel abysmal. It has never been asked with any intention of making me feel flawed, but it does. I feel like I have to take inventory of everything…

It’s so easy to get down about the daily struggle of becoming progressively more disabled. Every single day, more of my abilities and independence slip away, and I rely more heavily on my village for support. Although this brings up a lot of hard, sad, heavy, difficult-to-process feelings, it…