I’ve decided I should share some glimpses into my life that I wrote about in my book, My Unexpected Life: Finding Balance Beyond My Diagnosis, because I think many of you will relate, disabled or not. These everyday struggles show how Friedreich’s ataxia can be frustrating.
They also show how it’s not always the disability itself, but how others react to it. Identifying as disabled and finding community in that has helped. So has making decisions about my life and how I want to live it.
This incident in particular sticks with me, because I made a decision that day, and it felt good.
Disability Can Be Frustrating, But Other’s Reactions to It Are Worse
When I was in high school, Mom expected me to go to church with her during the summer if I didn’t have to work. I argued that I didn’t want to participate with such a hypocritical group—given their judgmental beliefs about gay people and non-Lutherans.
While in college, I went to church by myself a handful of times even though my connection to the church had waned. One Sunday, I agreed to attend service with Mom because I knew it was important to her and I was moving out of my parents’ home.
The day was humid and the sun popped out from the gray clouds, letting a few beams of sunlight through the rectangular windows, brightening the inside of the stone church. Its interior was minimalist, with white walls with light brown pews.
Even though the familiar script of the service was there, the experience still felt foreign. I knew no one at this church. They had no idea who I had been growing up. I was someone they greeted with familiarity. I was a cheerleader, a piano player, and a member of the choir. Now, I was just some disabled chick who made them all stare awkwardly.
At the end of the service, I was yawning as the congregants were ushered out, one row at a time. Mom and I were in the last row, which had allowed me to park my walker, Ner, behind me. We proceeded to exit the pew at the usher’s signal. With my mom behind me, I stepped into line behind a middle-aged woman.
The Defining Moment…
The stranger gave me the usual uncomfortable look after scanning me up and down in an effort to figure out what was wrong with me. I ignored her. We came to the big, heavy wooden doors of the church. Our eyes met. She is going to hold the door for me.
The door opened, and she strode through the opening, nose in the air. The thick wood slowly came back toward me.
“Thanks for holding the door for me,” I said, dripping with sarcasm before she was out of my sight.
“Oh. I’m sorry. I didn’t see you,” she claimed while scurrying to hold the door for me.
Yeah, it’s hard to not see the girl with the walker.
I obliged and stumbled past her before turning to give her my most smart-ass smile. “Thanks.”
I hid my anger until Mom and I were driving home. “Did you see that?” I asked. Please tell me you did.
“What?” she answered, oblivious.
As I told the story, my frustration grew. “Can’t you see how fake and sanctimonious they are?”
Her reaction was calm. Although she seemed to believe me, she also seemed to toss my question and concern aside, along with all my other “hysterics,” which annoyed me more.
“I am done.” I exploded. “I am not going back. I told you it’s a bunch of hypocrites.”
She let me rant and did not argue. I never returned to that church.
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So, yes, living with a disability like Friedreich’s ataxia is sometimes frustrating, but being dismissed because of my disability is much worse. But I took control that day and made a decision not to go back to that church. It felt good.
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