My FA diagnosis left me ‘thoroughly shaken,’ but I’ve found my resolve

Friedreich’s ataxia (FA) shook up my life in every way imaginable.

I started to notice a loss of balance and coordination in early 2013, which resulted in a five-month diagnostic journey and then a diagnosis of FA that August. It’s fair to say that in those early days, weeks, and months, I was in a state of shock, profoundly overwhelmed, and absolutely terrified. At the age of 23, I had never even heard of FA, let alone felt prepared to wage a lifelong battle against my very DNA.

I was shaken to my core and had no idea what my future could or would look like anymore.

I was blessed recently to hear a sermon from a pastor from a large church in Fort Lauderdale, Florida. Using cans of Diet Dr Pepper as an illustration, he demonstrated how shaking a carbonated beverage causes its contents to come out in a messy way.

Initially, the mess that spewed out into my life after receiving my diagnosis was dark. I no longer knew which way was up, and I felt unanchored, adrift in a hurricane. After the initial shock wore off, I gathered some information about this unknown disease and figured out how to move forward.

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FA is not my whole life

I am not proud that my immediate response was not a composed one of quiet resolution and strength, but I am proud of what the last 12 years of life with FA have revealed about my character.

I have adapted to this disease and the physical accommodations that my progressing symptoms have demanded, but my life is not centered around FA. The disease is a complicated and trying part of my life, but it isn’t my whole life.

My life is abundantly full of so many things — wonderful things, good things, fulfilling and exciting things, character-building and hard things. FA is just one of those things.

It is hard to time-stamp the exact moment when I switched from unanchored and drowning to moving onward and upward with resolve, but I can say confidently that it was centered around becoming a mom.

My husband, Kyle, and I decided to have him tested for the FA gene mutation before considering our options for starting a family. When the results proved he was not a carrier, meaning any biological children we had together would not become symptomatic FA patients, we decided to try to start a family. When I heard my son’s heartbeat via ultrasound, I vowed to make a positive change in my little corner of the world.

FA is still a big part of my life. It affects how I participate in and approach each day. I pray for it to leave my body and my life morning, noon, and night, and I will continue to do so until a cure is found.

Until that time, all I can do is be intentional that the mess that comes out of FA shaking up my life is one that I am proud of. I will continue to try to spread joy, vulnerability, grit, grace, purpose, kindness, and understanding.

“She was thoroughly shaken, wondering what was behind a greeting like that. But the angel assured her, ‘Mary, you have nothing to fear.’” — Luke 1:29-30

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.