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.
Special occasions make me introspective, as I have written before. On days when my Friedreich’s ataxia (FA) symptom progression is clearly noticeable, I take time to observe how my FA is affecting my current experience and measure it against previous years.
This might seem masochistic or like I am stuck in the past, pining for “what was.” But in reality, taking those few moments to take inventory of my reality helps me to move on and be fully present in whatever capacity my FA symptoms will allow this year.
We celebrated Halloween last week. My husband, Kyle, and my son, Brooks, were inflatable dinosaurs. My daughter, Collins, was Aurora (Sleeping Beauty), and I was Belle from “Beauty and the Beast.” Even our dog, Betty, got dressed up! She was Cinderella. As I got dressed as Belle, I had so much fun escaping my disabled reality and pretending I was someone else for a bit.
Kendall and her family are a cast of characters on Halloween. (Courtesy of Kendall Harvey)
For a few seconds here and there, I felt like a kid again. I felt like 7-year-old Kendall getting my face painted as a cute clown to go trick-or-treating. I felt like 14-year-old Kendall coordinating with my friends about which costume from Britney Spears’ “…Baby One More Time” music video we would dress as. I felt like 20-year-old Kendall dressing in a sailor costume with all of my college friends. In other words, I didn’t feel like a disabled 33-year-old mom for a minute.
Then, my reality caught up to me again. When I was all dressed and ready to head to the neighbors’ house for our little Halloween party, I walked into the living room for the big reveal to my family. But I became frustrated because my walker was blocking my costume, dampening the big “ta-da” moment. I felt like the same disabled Kendall, except I had a wig and different makeup.
I know that to most people, a walker might seem like a trivial thing that shouldn’t ruin everything. It’s just something I use to get around, so why is it such a big deal? It’s not the walker, per se, that gets to me. It’s the disease that made me need it, and the knowledge that my symptoms will worsen.
I know that not everything is about FA, but sometimes it is. And that moment when I felt like the same disabled girl, except with a wig, was about FA, despite how much I wish it weren’t. I wore a big smile on my face and tried my best to fully enjoy my family’s reactions and cast away my concerns about FA for the moment until I could process them later.
Sometimes my FA demands attention and mental “real estate” when I least expect it. I have to recognize my disease. I have to see and name the feelings FA stirs up so that I can process them and move forward. My FA demands respect as much as it demands adjustment.
As we continued on with our Halloween night, I tried my best to be fully present and handle every feeling as it came. I laughed so hard that I got a stitch in my side when I watched Kyle and Brooks run down the street in their inflatable dinosaur costumes. I cheered with Collins as she celebrated each piece of candy in her bag. I felt grateful for the golf cart I was driving so that I could safely roll alongside them and not miss anything. I felt sad and jealous when I saw other moms running around with their kids. Each feeling claimed time in my Halloween experience.
I kept thinking back to Halloween five years ago when I was able to pull Brooks in a wagon. I felt so frustrated and disabled with my current stage of progression. I kept telling myself, “You can still safely participate from the golf cart. Remember how that Halloween pulling the wagon was emotional because you had to pass the wagon to Kyle and use his arm when the hills were too much? So, this isn’t all bad, just like that wasn’t all good. Enjoy what you can while you can. And just handle whatever else comes when it comes. Be present. Take this experience for what it is.”
Kendall uses her walker while trying on the inflatable dinosaur costume. (Courtesy of Kendall Harvey)
For me, it helps to give each emotion time and respect. It helps me adjust the ever-changing perspective needed to handle a progressive disease like FA. If I process the bad, it helps me appreciate the good.
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