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.
When I was diagnosed with Friedreich’s ataxia (FA), my greatest worry was how it would affect my future. What would living with a disability look like? What would FA add to my future? What would it take away?
Now that I’m nearly a decade into life with FA, and have depended on mobility aids for the past four years, I feel like I can begin to paint a picture of what a day in my life with a disability looks like. In reality, I’m pretty sure my life doesn’t look too different from that of other busy moms of little ones — just slower and slightly more complicated.
Since fatigue is one of my main symptoms, getting a proper amount of sleep is paramount to being productive the next day. Therefore, I strive to be in bed around 9:30 or 10 p.m. before waking up at 6:30 the next morning to get my two young children out the door for school.
Since 2018, my first activity every morning has been to take the study drug from a clinical trial I’ve been participating in. It makes FA the very first thing I think about when I wake up. Every morning, I pray that the drug will slow my symptom progression. Then, I reach for my balance-supporting grab bar to get out of bed safely and move toward my walker, which is dutifully parked at the end of my bed. Some days, my thoughts linger on FA. Other days, I get wrapped up in the busyness and forget about my condition.
After my morning routine, my day is pretty much like everyone else’s: Eat breakfast, exercise, shower, get dressed, run errands, squeeze in lunch, do domestic chores, carpool, attend youth sports, text and call with friends, eat dinner, help the children with baths and bedtime, and then get ready for the next day before pouring myself into bed. Rinse and repeat day after day.
How FA impacts my day
However, there are times when my disabilities greatly affect my day. In addition to using a walker or other mobility aid, I have to factor in my slow walking pace when planning my day. I have to keep my physical therapy appointments. I have to say no to things I can’t safely do. I must factor my energy levels into almost every decision I make and stick to my priorities. I have to ask for and accept help.
I lose my balance before catching myself with my walker or a nearby structure almost hourly. I completely fall about once every five weeks. I always have bruises from these incidents. I speak slowly and my speech is slightly slurred. I must wear diabetic socks and wide shoes to manage my peripheral neuropathy.
I have intentionally assembled the most amazing and dependable village possible. My husband and children know my capabilities and limitations and help me function within those boundaries. My friends graciously understand my capacity and meet me where I am. My parents patiently help, support, and encourage me when needed.
I still enjoy attending girls’ night out, participating in Bible study, volunteering at my children’s school, cheering on our teams at youth sports, watching trash TV, reading the news, hosting parties, taking naps, splurging while online shopping, laughing, crying, and zoning out — just like everyone else. FA didn’t change what I enjoy, it just changed how I do those things.
I’ve had to realign my priorities, to be sure, but who I am at my core is unchanged. I’m still hopeful for what tomorrow may bring. I still prioritize spending time with friends and family. I still love my life, even though it looks different from the life I’d planned.
“‘For I know the plans I have for you,’ says the Lord, ‘plans for well-being and not for trouble, to give you a future and a hope.'” — Jeremiah 29:11
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