Advocacy seems to be taking on a new meaning for me as the years pass and I become more comfortable in my own body. In addition to increased confidence in myself, the Enneagram personality test I previously wrote about is still proving to be valuable in helping me understand…
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The other day, I experienced a strange moment. As usual, at the end of my son’s baseball game, I had to just sit there waiting for help while everyone around me was busy packing up snacks, folding chairs, and gathering all of the equipment required for Little League spectators.
Hello, friends, old and new! Spring is coming to a close, and the days are getting longer and hotter down here in Alabama. I hope that you have some time today to reflect and be proud of how far you have come. You are worth celebrating, and the world would…
This week marks the end of the school year for many schools in my area, and therefore, the beginning of summer. I was recently chatting with a large group of friends, whose children are different ages and attend different schools, about everything we’ve survived during this unprecedentedly difficult school year.
The importance of words may be obvious to most, but I am gradually learning that lesson. The first time the power and weight of words struck me was the first time I was referred to as a “cripple.” Being called a cripple had such an impact…
“Are you living by design or by default?” My friend asked me this while we were catching up over dinner after local restaurants started serving on outdoor patios again. My friend knows I’m highly ambitious, but he also knows that I can procrastinate…
As my Friedreich’s ataxia (FA) has progressed, I’ve had to make adjustments to accommodate new symptoms. Since my 2013 diagnosis, I’ve had to intentionally account for countless modifications every day — step by step and movement by movement. As part of my duties as an FA patient, I go…
Protein is necessary for the human body to stay healthy and function properly, regardless of whether you work out or not. According to the American Council on Exercise, “Protein is the principal component of every cell in the body and is needed to build…
As Mother’s Day approaches, I can’t help but pause to reflect on what this holiday means to me. I love celebrating my mother. Not only did she give me life, she gave me a wonderful life. She is a fundamental member of the village I need to get through…
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…
Recent Posts
- The ethics of time: Setting boundaries as a rare disease caregiver
- The power of smiling in life with Friedreich’s ataxia
- New gene therapy uses blood cells to deliver key Friedreich’s ataxia protein
- Friedreich’s ataxia places heavy daily burden on patients, caregivers: Study
- Living with FA has taught me the difference between pain and suffering