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’ve always been an emotional person. I feel everything with great depth and have a long memory, and while I love to celebrate the good in life, I tend to be consumed by the bad. I often take things personally and overthink them. At times, my emotions will seem to hop on an imaginary hamster wheel in my head and run wild, knocking down any logic or reason and creating drama where there doesn’t need to be any.
As I get older and wiser, I’m trying to rein in those emotions, especially the negative and unpredictable ones. I don’t want them to dictate my life anymore. On the other hand, I see the value in being in tune with them, so I’m trying to stay true to who I am.
As my Friedreich’s ataxia (FA) journey has advanced, taking an honest inventory of my emotions has become vitally important as I attempt to navigate my symptom progression. If I can understand how I feel about things, I’m better equipped to move forward in a productive way, instead of going off on an emotional tangent.
Lately, I’ve noticed that when my disabilities make a task inconvenient, whether it’s big or small, I take it personally. Then it takes me a while to recover.
Shopping at the Target near my house is an example of a minor inconvenience that nonetheless triggers me. I’m convinced that this particular store has the most efficient shopping-cart collectors in the great state of Texas, because the parking lot corrals never have any carts. So I have to get my walker out of the car, walk into the store, put my walker in the cart, walk back out to my car, and then return to the store.
This inconvenience takes me about eight minutes, not long in the grand scheme of things. But it’s a frustrating song and dance that reminds me yet again that I have a disability that prevents me from experiencing things like everyone else — even shopping. This triggers all kinds of emotions.
A recent major inconvenience is accessing the soccer field to watch my 5-year-old daughter play. The field is at a beautiful elementary school carved into a hilly part of Austin, but getting there involves descending an inaccessible, rough, rocky path to a steep gravel hill, followed by a ramp with five curves.
My husband was helping me navigate the hill, but we ended up having to abandon my walker. Instead, he carried me the entire way. If he hadn’t been with me, I wouldn’t have been able to watch my daughter play in her very first soccer game.
I realize both of these examples highlight problems with accessibility. Many other inconveniences trigger my negative emotions, but accessibility is my focus here.
FA is almost guaranteed to be an obstacle I must factor in when I go anywhere. In my experience, the U.S. is actually fairly accessible. Yes, my disabilities dictate a lot of what I can or can’t do once I access a place, but for the most part, there aren’t a ton of places I can’t go. So why do I get so upset about accessibility inconveniences?
Perhaps it’s because I know that while I currently have the freedom to use my walker, a helping arm, or something else to aid my mobility, that won’t always be the case. The fear of how I will navigate independently as my disabilities grow consumes me.
Or perhaps I’m still bitter that accessibility is even a recurring inconvenience in my life in the first place. My resentment of FA could be the driving force behind my emotional thought patterns.
Whatever it is, I must remind myself that cooler heads prevail. If I respond from a place of cool logic versus hot emotion, things tend to work out in the end. These inconveniences are an opportunity to refine my emotional reflexes.