My life is not boring due to FA, but it can be frustrating

Back-to-school season is almost here again. I see advertisements for it everywhere. Kids want clothes with sharks on them, teachers want kids with calculators, and parents want new backpacks (for their kids).

Here in New England, the climate changes as fall approaches. The days are getting shorter, the nights are getting cooler, and plants that bloom in the fall are starting to bud.

For me, the back-to-school season means my husband, Dave, who has been at home during his summer break, is getting ready to return to his job as a math teacher at our local high school.

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I’ll miss his company. On any given summer day, we’re usually together in companionable silence, as we don’t typically chitchat throughout the day.

I’ll also miss him helping me when I get into a jam because of Friedreich’s ataxia (FA), which causes me to have poor coordination, among other symptoms. The jams I get into typically involve me falling and being unable to get up.

A question I’m often asked this time of year is, “Aren’t you bored when Dave is working?” Let me metaphorically scream from the rooftops (because people with ataxia don’t belong on rooftops): “NO!”

I do experience weariness and restlessness due to fatigue from FA, but not from a lack of interest in my daily activities. If anything, I feel like I’m not keeping up with the tasks I’ve committed myself to.

As my FA progresses, I become less efficient. I may have brilliant thoughts about what to include in this column, but the physical act of typing it up or correcting my dictation is time-consuming. I feel like FA has robbed me of time and, therefore, my ability to do all the things I want to. The requirements involved in writing my column are just one example of the way FA sucks my time.

This leaves me feeling frustrated, not bored. Whether Dave’s at home or not doesn’t affect my frustration.

My purpose in life

My friends and family know that I’m busy with many things: exercising, eating right, going to the doctor, taking care of my sweet service dog, spending time with the people I love, writing this column, participating in all aspects of fundraising for my patient organization, being an ambassador for that organization, gardening, taking care of my home, and more. Justifying my day-to-day activities is what I find boring.

I can link everything I do to my sense of meaning — or the “why” of my life. That is why even things I find monotonous (vacuuming, anyone?) are not boring.

Some psychology definitions of boredom note a discrepancy between what one can do and what one wants to do. Maybe that’s why people ask me, the wheelchair user, if I’m bored. I experience this discrepancy as frustration with FA, and sometimes even anger. I’m not saying this definition is wrong, it’s just not right for me.

Boredom isn’t something to leave unexamined, though. As an article in the journal Frontiers in Sociology notes, “Boredom is not a trivial experience, but rather a complex psychological phenomenon that can impact mental health, cognition, and behavior. It is linked to depression, anxiety, substance use, impulsivity, and increased risk-taking behavior.”

As I soon enjoy the yellows, oranges, and reds of another New England fall, I promise to take time to reflect on how fortunate I am to appreciate rather than feel overwhelmed by my purposeful responsibilities.

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.