The first time I ever heard of Friedreich’s ataxia was the day I was diagnosed with the disease in 2013 at the age of 25. To say I was in shock is an understatement. I was scared, overwhelmed, confused, angry, eager, and desperate. So, I am going to try…
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“I get him, and he gets me,” Cassandra states as if it’s obvious. Her boyfriend Roland can be seen in the background of this shot, acting goofy and dancing in his wheelchair. As they sat at a table in the mall’s food court, Mary had…
Dearest Mom, I wrote this a long time ago, but I wanted to wait for a random day to show my appreciation. Not your birthday, not Mother’s Day — “just because.” At first, I couldn’t write a word without crying, but eventually everything spilled out so naturally. First…
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Walk a Mile in an FAer’s Shoes
Shoes are essential for making a statement on one’s wardrobe and personality. This is especially true for me as a young woman with Friedreich’s ataxia. I want to be able to fit in, yet still feel comfortable and safe. It’s been difficult to find a pair of shoes that best…
Friedreich’s ataxia causes a wide array of symptoms. Every FA patient experiences the disease differently. For me, fatigue is a major symptom. Before I experienced FA, I thought I understood what “fatigued” meant — being really tired. Boy, was I wrong. Oxford Dictionary’s definition of tired is:…
“Don’t hold a glass over the flame/Don’t let your heart grow cold/I will call you by name/I will share your road.” –Mumford & Sons. “Matt?” my professor repeated for who knows how many times, interrupting the imaginary…
It wasn’t until a fire alarm at my hotel this past weekend that I realized the complete disregard for people with special needs in emergency preparation. I hadn’t been in an evacuation situation since before my diagnosis, so this was an eye-opening experience. The alarm went off at…
The three-day Labor Day weekend often means relaxing and spending time with people you may not often see. This holiday, my fiancé Justin and I visited his hometown near Scranton, Pennsylvania, to see family and friends. It had been two months since our last visit. It was a…
Since my 2013 Friedreich’s ataxia diagnosis, the condition has consumed a part of every day. I was prepared for the physical changes that would come with FA, but the mental and emotional stress has surprised me. It is a factor in almost all of my…
In my memory, we were always lithe and sure-footed. Two shadowy cat burglars, but with no inclination to steal. So, not burglars; we were spies. Spies! My aunt and uncle and their kids arrived at my house one Saturday. Our families got together almost every weekend…
In Friedreich’s ataxia (FA) care, we don’t really have treatment options. There are clinical trials taking place to work on treatments and hopefully one day, a cure. But until then, we are left at the mercy of this progressive, degenerative disease. Wow. That is heavy. And disheartening. The…
When you plan a destination or a weekend getaway, it is wise to make travel and transportation arrangements and detail an itinerary of what you will do while on your trip. However, when you have a disability, extra steps are involved in planning. My planning includes three components: plan in advance,…