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 love springtime in Texas, and all that comes with it: baseball season, wildflowers, rodeo season, longer days, warmer sunshine, home projects, live music at local restaurants, and more. Everything feels happier and more vibrant.
This year, springtime feels different. We had a historic and catastrophic snowstorm at the end of February that damaged or killed a majority of the plant life, so we aren’t experiencing all of the beautiful and bright colors that normally spring to life this time of year. Many events are still canceled or limited because of the COVID-19 pandemic.
In addition to my recent neuropathy and scoliosis, all of this has left me in a negative funk during a season that normally fills me with hope and excitement.
When outside circumstances lead to bad moods, I can improve my mood, even if only slightly or temporarily, by simply focusing on the positives in my life.
Yes, Friedreich’s ataxia (FA) has taken a lot away from me. But when I pause to think about what FA has given me, I am surprised and humbled.
I have learned a lot because of FA. I have learned about genetics, the central nervous system, muscle groups, and how clinical trials happen. I have learned that I am more capable than I ever gave myself credit for. I have learned how to humble myself and ask for help. I have learned how to listen to cues from my body. I have learned how to be an advocate and an ambassador.
I have developed deeper relationships with really wonderful people. FA has made me more empathetic and vulnerable, which makes me a better friend. With FA, I have experienced the highest of highs and the lowest of lows, and going through that with my husband has made me a better wife. I was introduced to the incredible people that make up the FA community.
Because I am not able to run around with my kids, coach their teams, chaperone their field trips, and actively participate in a lot of activities, I have had to find creative ways to get involved. My kids and I have developed hand signs to communicate love and excitement with each other. My walker and wheelchair provide an opportunity to teach their young friends about people with different capabilities. I get to watch how my kids interact with their friends and authority figures, and how they respond to adversity.
Sometimes it’s hard to feel like a spectator of my life. But I appreciate that I don’t miss anything due to the busyness of running around. I get to sit and cheer for my son during every at-bat. I get to watch my husband spot my daughter as she learns cartwheels in gymnastics. I’ve taken up photography, and I enjoy snapping action shots of my kids and capturing sweet candid moments with their friends.
I am most thankful that FA has provided me with perspective. I am more self-aware, self-assured, and intentional than I ever hoped I would be at 32 years old. I know that my thoughts and feelings are just that — thoughts and feelings. They aren’t facts. They don’t control me. I take the time to appreciate my feelings and their cause, and then process them. And most importantly, I find a way forward.
On that thread, I will appreciate this spring for what it is. We can clear out overgrown bushes and trees in our yard and plant new ones that we will get to watch grow through the years. We can keep finding fun and creative ways to enjoy life as a family. We can make our own vibrance and happiness. I will continue seeking out that which makes me hopeful and excited.
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