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.
One of my favorite books to read to my children is “What Do You Do With a Problem?” by Kobi Yamada. In it, the book’s main character suddenly finds himself facing a problem. He worries about “what would happen, and what could happen.” The more he worries about his problem, the bigger it becomes, until he finally realizes that he must face it.
When he finally does, he realizes that his problem also held something beautiful: an opportunity. This is a beautifully illustrated lesson to absorb when facing our own problems.
When I sat down to read the book to my children at the end of an unnecessarily frustrating weekend, I had an epiphany about an unhealthy and disruptive tendency of mine: When an inconvenience, hardship, obstacle, or adversity enters my path, a part of me thinks, “Seriously? As if dealing with Friedreich’s ataxia isn’t enough, now this?”
With Friedreich’s ataxia (FA), I think it’s safe to say that each day I operate at an average of about a seven out of 10 in terms of my hardship levels. My FA storm cloud is big and dark and demands that I navigate life with extreme caution. Because of that, I have a predisposition to feel as if I were entitled to an easier path in life because I’m already battling so much. But the reality is that I’m not owed anything more or less than anyone else. FA isn’t a get-out-of-jail-free card.
Everyone faces adversity, whether big or small, so why should I expect any different? When problems that aren’t related to FA enter my path, I need to respond from a reasonable base level, not an elevated one of “I’m entitled because of FA.” I need to pause, take a deep breath, and think about what the problem I’m facing truly is. I can separate the problem from FA and compare it. When I take a true measure of problems on that scale, they seem either less scary or less insurmountable.
In doing this, I can tackle a problem as best I can while working within my limitations from FA. Hopefully, this will make me feel less bitter, defeated, and incapable. Instead, I hopefully can view my problems as opportunities, because I am entitled to opportunities for growth.
As German philosopher Friedrich Nietzsche remarked, “That which does not kill us makes us stronger.” In my 34 years of life, I’ve overcome so much more than I ever thought I would be able to because of FA. I’ve realized that I’m stronger than I used to give myself credit for.
The relentless problems I face because of FA hold something grand: relentless opportunities. Every minute of every day, I have the opportunity to choose to rise above my FA-related challenges. This can give me strength, confidence, and grit to face the other challenges in my life, if I choose to let it.
I do frequently grow battle weary from FA, and that’s OK, as long as I use those moments as opportunities to learn my limitations and abilities. I’m reminded of a Bible quote from John 16:33 (NIV): “I have told you these things, so that in me you may have peace. In this world, you will have trouble. But take heart! I have overcome the world.”