Donning My Friedreich’s Ataxia Hat
I wear many hats: I’m a wife, mom, daughter, sister, friend, writer, etc. The most exhausting, constant, and thankless hat I don is that of Friedreichs ataxia (FA) patient. This hat is too big, ugly, and dominating. I don’t feel like myself in it. It doesn’t feel right on me.
When I wake up in the morning, I put on my mom hat and check the monitor to see if both kids are still asleep. Then I am immediately forced to switch to my FA hat, because I see my walker sitting by the bed and I’m reminded that I can’t function “normally” on my own. Then I have to take my medications for the FA clinical trial I am participating in (they must be taken first thing in the morning on an empty stomach).
I don’t even get one minute of bliss to forget about FA when starting my day. However, I try my hardest to get along despite FA. I choose strength every day. I choose to prioritize my other hats and not let my FA hat get pulled over my eyes.
Yet, my heart gets broken and my strength vanishes. My spirit gets zapped. All it takes is a fall to knock all my other hats off and let the FA hat overpower me. And I’m not talking about the little stumbles or “catching yourself on the (enter any solid object here)” falls that we FA patients experience constantly. I’m talking about the big, scary, out-of-control, spiraling falls that knock you flat.
This morning, I had one of those falls. I’m physically OK, as nothing is seriously injured. I was rocking my mom/maid hat, cleaning up my son’s room. With one hand on my walker, I bent down to check his frog terrarium and just spiral fell, ping-ponging all over his furniture. I banged up both forearms, my shin, my wrist, and my thigh. I’m going to have a few gnarly bruises, but no real damage was done.
The physical pain will end. The bruises will fade. It’s all part of FA. But the recovery from emotional pain is what takes the longest for me.
Falls make me feel so defeated. After a fall, I feel like no matter what I do — how well I eat, how much I exercise, how happy I act, how much I try to ignore FA, how hard I try to be “normal,” what precautions I take, how much strength I muster, how much money I raise for FA research, how many columns I write, or how hard I try to rise above — FA is winning. It’s relentless and unbeatable. It’s so massively unfair.
I know that life will get back to “normal.” The pain will fade and the hurt will subside. My self-pity will be eclipsed by something much more important and productive. But I just wanted to write this column to remind everyone that it’s OK not to be OK. It’s OK to feel your pain. It’s OK to allow yourself to have a moment in the darkness.
But it is important to seek the light again, to find hope, happiness, purpose, and laughter. You can’t live in the darkness, because then FA will truly win.
One of my favorite quotes is, “Everything will be OK in the end. If it’s not OK, it’s not the end.” Whenever I fall and sustain minor (or major, in some cases) injuries, I remind myself of this: I am OK. This isn’t the end. It’s time to press on.
I’ve decided that I will trade my worry for peace. As the book “Jesus Calling: Enjoying Peace in His Presence,” by Sarah Young, says, “You must choose whether to trust Me or to worry. Choose to trust Me, and I will trade your fear for My Peace. You will never run out of things to worry about. Choose to run to Me instead — I will never run out of Peace.”
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