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.
Lately, I have been falling into a funk easily. All of the “little things” that bother me about life as a Friedreich’s ataxia (FA) patient seemed insurmountably huge and sucked all of my drive away. I didn’t feel joyful or enthused about much of anything except sleeping.
So, I decided it was time for a change. I was tired of feeling tired and blue. Being so down about FA was affecting every aspect of my life — my ability to parent effectively, the way I was treating my husband, my communication with friends and loved ones, my desire to exercise and eat well, and so on. I was falling into unhealthy and, frankly, unsustainable patterns.
I saw an inspiring anonymous quote that said, “Stop trying to calm the storm. Calm yourself. The storm will pass.”
I realized that I was spending all of my limited energy trying to calm the “storms” in my life, and when I failed to do so, I would fall into a funk.
On any given day, I weather any number of storms, small and large. The consistent daily storm that I face at this phase in my life is my frustration with my failing body due to FA progression.
I can’t control my FA. Despite all of the feelings that stem from that realization, it is a fact. While the realization is overwhelming, frustrating, and undesirable, it is also liberating. Because I can’t control everything, I can stop trying to control everything, and I can certainly stop punishing myself for my unavoidable inability to control everything.
As my mentor, Julie Richard, says, “We cannot always control our circumstances, but we can always control how we approach and respond to them.”
I can’t control my FA symptoms. I can’t control how those symptoms progress day by day. But I can control how I respond to FA.
FA is as much a part of me as anything else in my life. And barring a miraculous and speedy medical advancement, it likely isn’t going away anytime soon. While I will continue to support medical efforts to treat and cure FA in whatever way I can, I still have to manage my daily life as an FA patient.
I can admit when managing life with FA is just too much and seek help. I can control how late I stay up watching TV. I can control what food I eat. I can control the blogs, social media posts, and influences I consume. All of these choices empower me to “control FA” the only way I truly can: by controlling my approach and response to FA.
When I focus on controlling my approach to FA, the one constant storm in my life, I am in a healthier headspace to weather other storms.
My toddlers’ mood swings and potty training will pass. COVID-19 will pass. Holiday busyness will pass. Aches and pains will pass. Disagreements will pass. I cannot control all of these temporary storms. But until they pass, I can control how I will approach and respond to them. So, that is my focus. Controlling what I can and letting go of what I can’t.
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