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.
Friedreich’s ataxia (FA) is a huge part of my life, like it or not. My disability due to FA is one of the first things people think or wonder about when they meet me. As much as that reality breaks my heart, I can’t do much to disassociate from such an obvious, unique, and memorable physical presence. My slow and slurred speech, dependence on mobility aids, and inability to do many physical tasks are hard to miss.
I have a few options for my response to this undesirable attention: ignore it, let it define me and then get depressed about that, demonstrate that FA is only a part of my life, or drown out the unfavorable aspects of living with a disease like FA by shining a light on the other areas of my life.
In my decade of living with FA, there have been times when every response has been called for and has been my uncontrolled gut instinct. For better or worse, other people’s reactions to my FA have played a pivotal role in my mood, actions, self-esteem, and inner dialogue.
Through these experiences, I have learned a lot.
Crucial self-reminders
The first lesson is that people aren’t thinking about me as much as I think they are. If two people lean in for a hushed exchange, it isn’t necessarily something negative about me, so I should stop assuming that it is. It’s just as likely that they are saying something positive, or that they are discussing something that has nothing to do with me. I frequently have to remind myself to stop being so paranoid or self-centered.
The second lesson is that I shouldn’t feel obligated to present a detailed dissertation or exhaustive explanation when confronted with inquiries about my disabilities. That’s not what most people are seeking, nor is it a requirement of living with disabilities. Most people will simply accept whatever explanation you provide, save for a few follow-up questions or responses.
The third lesson is that empathy, concern, or offering assistance can often feel like pity to me. Pity is something that immediately upsets me and puts me on the defensive, so I am hypersensitive to it. When I feel myself teetering on that edge, I remind myself to pause and take a deep breath. This helps me to consider the source.
Oftentimes, if a stranger is offering assistance, it’s because I either really seem to be in need, or they’re just seeking verbal confirmation that everything is OK with me. Either way, their kindness doesn’t deserve my emotional hostility. If an acquaintance or loved one offers empathy, concern, or assistance, I need to remember that relationships thrive in honesty and shared experiences, neither of which can happen if I emotionally shut down because of an imagined offense.
And finally, I need to be aware of the power that I am giving FA. Yes, it is invasive, frustrating, unfair, and overwhelming, but it is not the only thing in my life. FA doesn’t deserve to claim imminent domain over my life. It doesn’t deserve to monopolize my thoughts, dictate my every experience, or control my emotions. I have more to offer the world than battle-worn scraps. Those parts of me deserve just as much time, care, cultivation, consideration, and time as FA, if not more.
Therefore, I will strive to be intentional about my reactions to the attention that FA brings to my life. After all, I can’t control anyone else’s actions or reactions, only mine. Sometimes.
“For God has not given us a spirit of fear and timidity, but of power, love, and self-discipline.” — 2 Timothy 1:7
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