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.
Almost everyone can point to moments in their lives dictated by the choice: fight or flight. By definition, the fight-or-flight response is a physiological reaction that occurs in response to a perceived harmful event, attack, or threat to survival.
Friedreich’s ataxia (FA) patients have to choose to fight every single day. We have to fight against our very genes, which are causing our bodies to fail. We have to fight to keep moving, to remain as independent as possible, to keep living the life we want in spite of physical limitations.
When diagnosed in 2013, this fight-or-flight decision faced me. The very first words out of my husband’s mouth were, “We can fight this.” I immediately snapped back at him, “Didn’t you hear what the doctor just said? This is a life-shortening disease for which there is no cure or treatment, how am I supposed to FIGHT it? I can’t beat this!”
My friends and family quickly learned not to use that phrasing around me. They let me mourn this unbeatable battle I was facing. I was a definite flight risk. I wanted to avoid this. I didn’t want FA. I didn’t want to fight for the rest of my life. I wanted to fly away from FA into an easy, healthy life. However, we learned more about FA. And I realized that I needed to face it head on — I needed to fight.
I have since defined what fighting means for me in my battle against FA. My version of fighting is doing whatever I can to resist FA. I am fighting to slow its progression. I don’t give FA the power it wants and demands. I refuse to take whatever FA has to offer without fighting back.
To fight, I have daily habits. I start each day by accepting that I have FA and the limitations that come with it. And I DECIDE to rise above, remain positive, and keep going forward. I raise awareness. I fundraise. I exercise. I go to physical therapy. I try to be the best mother I can be for my kids. I try to be the best wife, daughter, sister, friend, and patient that I can be every day. I laugh, I cry, I pray, and I manage the best I can. Fighting FA can be exhausting. But if I don’t fight, who will? There really is no other choice but to fight.
My pastor, Dr. Dave Haney, recently shared this beautiful poem that he wrote, which has become my new mantra:
There are times in life that we all must face
As we struggle and strain to run in the race
We scratch and we claw to fight for success
But we fall and we fail to find what is best
When troubles surround us and our life is off track
The low tide just means
High tide’s coming back
For in times just like these
in the hours before dawn
That we remember the sunrise
and keep pressing on
Anger, anxiety, remorse and regret
Belong long in the past, so forgive and forget.
Don’t throw in the towel, don’t drop out of the race
The victory is won, and it’s ours by His grace
Press on toward the mark,
toward the prize, toward the goal
Set your face, Fix your gaze,
get up when you fall
When dark times come and hard times we face
Press In and Press On and finish the race
For this is our call, to press on toward the mark
To never give up and to Press In to The Dark