I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below. Summer is in full swing for my family. My daughter, Collins, 6, and my son, Brooks, 8, finished school the last week of May, and it’s been nonstop chaos ever since. With camps, trips, sports, tutoring, working, exercising, chores, play dates, and more, our summer has been action-packed. Advertisement Every time there’s a change in my routine, my body needs a little ..read more

I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below. I have yet to find the secret to living a life where I wake up every morning rejuvenated, motivated, perfectly calibrated, and ready to tackle my day with gusto. I don’t think anyone has, but it’s especially difficult when I’m at the mercy of the wild card that is Friedreich’s ataxia (FA), which causes my physical abilities to progressively deteriorate. Instead, eve ..read more

I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below. When I was young and, frankly, naive, I had a lot of misconceptions about people with disabilities. I thought that the only people who used walkers were senior citizens or those recovering from leg injuries. I also thought that only people with nonfunctioning legs used wheelchairs and that they sat in them all day, every day. I guess you could say that I didn’t know ..read more

I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below. As I approach the 10th anniversary of my Friedreich’s ataxia (FA) diagnosis, I’m struck by an explosion of complicated and contradictory feelings. In August 2013, when I learned that the poor balance, fatigue, and slower speech I’d been experiencing were caused by FA, my future terrified me. It still does. Before FA entered my life, when I pictured myself at 36 year ..read more

I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below. Living in a disabled body in a predominantly able-bodied world is a rare experience that, frankly, I never anticipated having. Especially in my 30s. But thanks to my progressing Friedreich’s ataxia symptoms, it’s an existence I’m now, unfortunately, getting more and more accustomed to every day. While many of my symptoms aren’t visible or obvious to the casual obser ..read more

I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below. Note: This column describes the author’s own experiences with Skyclarys (omaveloxolone). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. When I was diagnosed with Friedreich’s ataxia (FA) in 2013, I was incredibly overwhelmed, to say the least. I’d never even heard of FA, let alone planned on waging a ..read more

I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below. When I was diagnosed with Friedreich’s ataxia (FA), my greatest worry was how it would affect my future. What would living with a disability look like? What would FA add to my future? What would it take away? Now that I’m nearly a decade into life with FA, and have depended on mobility aids for the past four years, I feel like I can begin to paint a picture of what ..read more

I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below. In my experience, much of what it takes to be a mother is the opposite of what’s required to live with a disability. As a mom, I constantly pour my all into my family. I manage the calendar and set the tone for the household, on top of all the mundane domestic duties such as cooking, cleaning, doing laundry, and grocery shopping. I’m the teacher, entertainer, chef ..read more

I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below. Although biology is a fairly standard requirement in the American educational system, and genetics is a frequently covered topic in biology, I’m realizing how little understanding most of us have about it. I was blissfully unaware of how little I’d retained from my adolescent studies until I had to try to explain the cause of my disabilities. This new burden of know ..read more

I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below. Living with Friedreich’s ataxia (FA) has created for me a complex relationship with the concept of help. I believe it’s important for everyone — not just people with disabilities — to humbly and graciously learn how to ask for and accept help. Fortunately (and unfortunately), FA rewrote the handbook for help in my life. FA is a humbling disease that forces me to rel ..read more