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.
About three years after my Friedreich’s ataxia (FA) diagnosis, the symptoms started to interfere with my productivity and safety. I acquired a disability parking placard and used it only when there were a lot of open accessible spots.
One day, I was out running errands with my son, who was about 18 months old at the time. I parked in an accessible spot that someone had left their shopping cart near, which I was so grateful for. I held on to my car for as long as I could, then took five or so steps to the cart. I brought it back to the car and loaded my son into the cart.
While this was happening, an older man parked in the open spot next to me. He looked at me and scoffed before saying, “Huh, I didn’t realize that having a kid was a disability that earned you parking privileges.”
Not that my story was any of his business, but I replied, “No, sir, it isn’t. But having a degenerative neurological disease that takes away your balance and coordination does. Accessible parking means less walking for me, allowing me to safely go about my day.” I started heading toward the store.
He called out, “Now that you say something, I see it. You walk and talk like you’re a little drunk.”
It took all of my self-control not to say something snippy back to him or cry. As it was 9 a.m. on a Tuesday, I prayed that no one else thought I looked drunk, and I finished my errand as quickly as possible. I still think about that day often, nearly seven years later.
Kindness and empathy are the way
On one hand, I’m so grateful that FA is, at times, an invisible disease. If I’m just sitting at a restaurant, driving in the carpool lane, or watching a movie, I look like everyone else. I don’t look as disabled as I am. But when I walk with my walker, use my electric mobility scooter, or talk, it’s obvious that I’m not like everyone else. Other times, it’s obvious that something is abnormal about me, and this brings about a whole battery of insecurities, unfortunate interactions, and sideways glances.
My husband, Kyle, and I recently took our kids skiing in Colorado for spring break. At the Denver airport, it is incredibly common to see countless people in wheelchairs, most of whom have knee or ankle braces on from a fresh ski-related injury.
Kyle was pushing me through the airport in my 2-in-1 walker and transport wheelchair. We kept seeing this sweet family with a mom and her two teenagers. The mom and the boy were taking turns pushing the girl, who had obviously blown her knee out while skiing. She was in a rented Southwest Airlines wheelchair with a big, bulky knee brace and visible ice packs.
The sweet young girl kept making eye contact with me, like we were kindred spirits on the same journey. I smiled back and asked her what had happened. Sure enough, she had blown out her ACL while skiing in Vail. She asked what had happened to me, and I politely said, “Oh, I’m not in this chair for an injury. I have a disability, so this is a permanent reality for me.”
I realized that I had become so used to FA being a visible disability when I use many mobility aids in my everyday life that I was shocked to blend in and have my disability be masked by a sea of injuries.
I was envious of that girl. Not to belittle her injury or the recovery journey ahead of her, but what I wouldn’t give for FA to be temporary — something that could be fixed by a fairly routine surgery and rehab process.
My FA is constant, unavoidable, and progressively degenerative. Being the “disabled mom,” “disabled lady,” “disabled friend,” etc., is exhausting. I’m used to the inquisitive, pitying, and sad looks that I get every time I step out my door. My balance issues are very visible, though I also battle debilitating invisible symptoms such as fatigue, peripheral neuropathy, and scoliosis pain. In addition, constant vigilance is necessary to prevent falls and injury.
All of this is to say that you never know what someone else is going through. Try to include kindness in all of your interactions because the other person might still remember and reflect on that moment for years to come. Whether someone has a visible or invisible injury or disability, they are a person with thoughts, experiences, and feelings. A little kindness can go a long way.
“Always be humble and gentle. Be patient with each other, making allowance for each other’s faults because of your love.” — Ephesians 4:2