Columns

Last year, my eyes were opened to high-needs disabilities when I moved out of my home and into a shared living situation with in-home care around-the-clock. It became obvious to me over time how difficult it was for the other residents to get around in public spaces. You see, in…

For those of us with FA or any other disability, overcoming adversity is part of our daily lives, to the point where we don’t even notice it anymore. There is a trick to embracing adversity, for turning life’s greatest challenges into some of life’s greatest opportunities, and it doesn’t come…

  Happy New Year to all of you! I hope 2018 has been treating you well so far and that you’re working toward your new set of goals (or existing ones). One of my goals every year, much like many of my peers, is to raise awareness for…

I was diagnosed with Friedreich’s ataxia (FA) as an 11-year-old. When I was about 15 or 16, the reality of my diagnosis hit me and I found myself struggling to cope with it. As far as I was concerned, my life was never going to amount to anything worthwhile because…

With the year coming to an end and Christmas coming faster than ever, I’ve become more reflective on what memories 2017 holds. Every year, I find myself saying, “Wow, I never thought I’d be here.” And yet, here I am again, repeating that tradition. 2017 was filled with…

As if public restrooms aren’t already a headache for the average person, being able to use only the handicap stalls is one of the most frustrating processes I and other wheelchair users face. I have been on both sides of the spectrum as far as being able…

I have learned that living with FA means constant heartbreak and adaptation. For example, I have had to go from using a cane to a walker in the span of two years. I went through the entire process of accepting that I needed a cane, getting the…

The ultimate test of any type of relationship in my life began the day I was diagnosed with FA. Friendships, family ties, and intimate relationships were all put through the ringer once I knew I was facing a life-shortening illness. Everyone copes differently with bad news, and miscommunication…

You know that feeling when you’re at a store and the cashier gives your change back and a couple of people are behind you? It seems like you can’t put away your change fast enough. Imagine that feeling for hours. That is like the anxiety I feel when…

You can ask my entire family — they’ll tell you I was fully willing to participate in clinical trials from day one. I’m assuming it was a combination of the previous minimal research I had done before my diagnosis, being an adult (or being older because, let’s face it, 22 is…

It’s not something a Red Bull or cup of coffee can fix. Pre-workout only goes so far. No matter what I do, it’s completely exhausting. After doing a load of laundry, I need to sit down and recover. And I mean, sit down for about 20 minutes to…

If you look at the walls in my house, they are riddled with fingerprints. When I am asked about my stage of progression and my mobility, I say that I am a tapper. I navigate through my house by tapping on the walls and furniture…