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.
During actor André De Shields’ Tony Awards acceptance speech in 2019, he shared his three rules for his longevity: “One, surround yourself with people whose eyes light up when they see you coming. Two, slowly is the fastest way to get to where you want to be. And three, the top of one mountain is the bottom of the next, so keep climbing.”
I agree with him — so much so that I have been unknowingly following these rules myself, especially when it comes to tackling the hardships of life with Friedreich’s ataxia (FA).
Life isn’t fair or easy for anyone, but the challenges my fellow FA patients and I face are unique. I battle to find joy, motivation, peace, purpose, and strength each day, despite being less able than I was yesterday and knowing that I will be even less able tomorrow. The progressive nature of FA haunts me, and it can easily overwhelm me if I am not proactive and intentional.
Following is how I have lived out De Shields’ rules.
First, to make the already monumental tasks of being a wife and a mother less daunting with FA, I have built a village of amazing people who are always willing to help me. Our eyes light up when we see one another. I am blessed to be surrounded by people who make my life exponentially better every single day.
They will pick my daughter up from preschool when I don’t have the energy to get my walker in and out of the car, walk in, and get her myself. They will support me through hardships and celebrate my victories, both big and small. They will pray with me and for me. They are not shy about giving me encouragement or tough love. They will put an extra hand on my walker to help me when I need it. They love and accept me for who I am, FA and all.
Second, as my symptoms progress, especially my balance and coordination issues, I am forced to slow down. I’m reminded of the warning parents often give their children who are learning to drive: “Don’t speed even if you’re running late, because you will be even later if you get pulled over for speeding.”
When I try to go faster than I should, accidents happen. I fall and injure myself, rendering the task I was rushing to complete an impossibility. If I had simply gone at a slow, safe, and intentional pace, I could have accomplished my goal and saved myself additional pain and frustration. Even though accidents still happen, despite my best efforts, slow works better than fast for me in life with FA.
Third, no matter what challenges FA presents or how I overcome them, the degenerative nature of my disease means that there will always be another metaphorical mountain to climb. I do not have the luxury of resting on my laurels or settling into a comfortable routine. As soon as I think I’ve reached the peak of one struggle, the earth shifts, and another challenge is revealed.
This might sound bleak and depressing, and at times it is, but with the right perspective, it can be motivating. When I pause to reflect on my journey thus far — all of the mountains I’ve summited that I once thought impossible — I feel empowered. After all, most problems and hardships can be viewed as opportunities if we adjust our mindset and approach them the right way.
One of my favorite Bible verses is Galatians 6:9: “Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.”
FA is a relentlessly challenging mountain range, but surrounded by the right people and moving at an appropriate speed, we can make it across. Not only that, but we can have an abundantly joyful life if we don’t give up — if we are just as relentless as FA.