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.
Many have read Nathaniel Hawthorne’s novel “The Scarlet Letter,” but in case you haven’t, the main character, Hester, is forced to live her life as an outcast with the scarlet letter “A,” for “adulterer,” on her chest to atone for her sin. The novel follows her life as an ostracized single mother in a cruel and unforgiving colony.
Not that she deserved the treatment she got or that the struggles in my life are a result of a societal punishment for a mistake I made, but I can relate to Hester in a way.
My children recently started their new school year (kindergarten and second grade), so I got to meet many of the parents of their new classmates. When you meet me in person, my disabilities caused by the progression of Friedreich’s ataxia (FA) are obvious. You can see my walker and how slowly I move, notice my poor posture, and hear my slow and slurred speech. It is fairly obvious that there is something “not quite right” health-wise.
I am an open book and willingly answer questions about my disability and FA, but I never begin a conversation or an introduction with details about my health situation. Yet, I can’t help but feel like my walker is a scarlet letter. It is a physical presence that tells those around me that I am not like everyone else, at least physically. So how do I navigate the waters of acknowledging my scarlet letter while trying to establish a life beyond my FA?
FA controls my physical abilities, which influences my participation in things and my choices, which pretty quickly turns into FA controlling my life. And when I let FA control my life, I find myself in a cycle of being consumed by it, and everything gets worse. My patience becomes ridiculously thin, my energy completely vanishes, and my physical symptoms seem to become insurmountably exaggerated.
FA, my scarlet letter, becomes a flashing neon sign that demands all of the attention. I get so wrapped up in thoughts about FA that it becomes my identity. I cling to my scarlet letter and it speaks for me, through me, and about me. The rest of my identity becomes background to FA.
I was recently blessed by a sermon on anxiety. I heard a lot of statistics and was directed to tools to battle a very real, very prevalent struggle so many face. And while positive thoughts are not an instant and permanent way to overcome true anxiety and anxiety disorders, I think that our minds are much more powerful than we give them credit for.
I was reminded of this often over-referenced Bible passage and contemplated the power behind it, from Philippians 4:6-8:
“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
“Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.”
Regardless of your thoughts about God, prayer, and faith, I think that the philosophical advice in this passage transcends all. The mind is a powerful and resilient gift that we have been given, and I plan on graciously accepting that gift.
I will try to stop clinging to my scarlet letter, empowering it to pull me into anxiety-infested negativity. Instead, I will try to think about “whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable,” “excellent or praiseworthy.” In doing this, hopefully, I will shine peace and joy that overshadow my scarlet letter, FA.