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.
I’m frequently asked, “What happened to you?” The person asking usually points at my walker. What they’re really asking is, “Why are you using a walker?”
People don’t tend to think of an obvious explanation as to why a healthy-looking, 34-year-old woman is using a walker, so they just ask instead of standing there wondering about it.
I know their intentions usually stem from genuine curiosity and are not malicious, but the question always catches me off guard. How much detail should I go into? How do I explain my complex and rare disability in a polite and conversational answer?
I usually respond with something like, “I’m OK. No injuries. I have a disability, and I need this walker to get around.”
Cue the shock and shame.
Most people immediately apologize for prying into my health situation, to which I respond, “Don’t worry about it. I’m glad you asked.”
I answer like that to leave the conversation open, should they want to ask more questions. But I also politely wrap it up in case they need a moment to recover from the exchange.
While I can’t speak to how others react after all of this, I’ll replay the exchange over and over in my mind for days. I’ll dissect their tone, facial expressions, and word choices. What were they seeking in that moment, I’ll wonder? Did I satisfy their curiosity? What do they feel when they walk away — pity, shame, enlightenment, curiosity? What were my tone, facial expressions, and word choices like?
Because there will undoubtedly be a next time, I try to think about how to handle such an exchange better. How can I answer more graciously? Should I edit my standard response to something like, “I have a progressive neurological disorder that has rendered me disabled, so I need this walker to get around.”
I am unsure because of my usual audience. As a result of my current phase in life, there are usually children present during these exchanges, whether they’re my children or those of the person I’m talking to. And contrary to popular belief, children hear everything, especially the things you don’t want them to hear.
I know that my 7-year-old son, Brooks, and 5-year-old daughter, Collins, are familiar with the words “progressive,” “neurological,” and “disabled,” but they don’t yet know “Friedreich’s ataxia.”
Sharing the specifics of why their mom is disabled is something very personal, and I want to make sure it’s done thoughtfully, appropriately, and at a specific time. I want them to reach a maturity level at which they can receive and digest this information, and then we can talk about their thoughts, fears, and concerns. I want to allow them time to ask questions and feel whatever they feel about the answers I provide.
I am careful about arbitrarily saying “Friedreich’s ataxia” in their presence, because that private and intentional moment isn’t while I’m dropping them off at school or cheering on my son at a baseball game.
This personal choice might not be fair to an inquisitive stranger, but frankly, protecting my children from fears about my future is a higher priority for me. I’m happy to dive into all of the details about Friedreich’s ataxia when the timing is right.
All of this to say: Please be a courteous stranger. It’s completely natural to be curious about a woman and her walker. But satisfy your curiosity in an appropriate manner. Be mindful of those around you who might hear the conversation. Be aware of your tone and facial expressions. Be intentional with your choice of words. And, above all, be kind.
“And do everything with love.” 1 Corinthians 16:14