FA Is Taking Away My Ability to Write

FA Is Taking Away My Ability to Write
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Being a writer without the ability to write is a conundrum. I think about it often, especially when I write these columns. I never realized how much I wrote until that ability was slowly taken away.

When I was younger, I loved to write. I would use every colored gel pen I could get my hands on to write in my diary. But as I grew older, it became more difficult. Journal entries took longer, and my hand would cramp. I slowly stopped writing and didn’t even realize it.

When I was in college, I noticed I couldn’t keep up with my peers when taking notes. Without a laptop, I would have been unable to record the necessary information from my classes. But I didn’t think too much about it because every student had a laptop or tablet. Handwriting was limited to grocery lists, sticky notes, and my planner.

I feel like I am a video game character who picked up a tool and has a short amount of time to use it. To be fair, that’s how I feel about Friedreich’s ataxia (FA). But especially with writing, my strength only lasts for so long and then my handwriting starts to look like it did in first grade.

The fatiguing of the muscles in my arms is frustrating. Feeling my arms give up without any say from me is one of the most disheartening feelings in the world. (Side note: Now others can understand why the peg test is so hated within the FA community.) We have limited control over what our bodies can do and how fast they can do it. I often yell at my limbs when they are being extra stubborn. It doesn’t work. They have a mind of their own, and whatever I say does not matter one bit.

I miss being able to write in a journal. I can type on a computer, but it’s not the same. There is just something about putting emotions on paper. Of pressing the pen down so hard out of frustration that its outline is on the next page. Or joyfully writing with more delicate handling of the pen. I miss having those choices. I hate being unable to write thank-you notes to express my appreciation and gratitude.

Sometimes it is suffocating when the progression of my FA is slammed into my face. I am overwhelmed when I’m constantly reminded of the things I can no longer do because of FA. I don’t like admitting that I missed the signs of my progression. But I did the best I could at the time. How was I supposed to know? I know practice makes perfect, but what if your body won’t let you practice at all?

Have you had a similar experience with arm function? How do you deal with symptom progression? Can you offer any advice to those who may be going through this? Please share in the comments below!

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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.

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4 comments

  1. Sara says:

    Although I don’t suffer from FA, I understand you feelings since I can’t write on paper with a pen. I have something called “muscle distonía”. I’m a teacher and my students look at me surprised. Well, at least new technologies are landing on the classrooms and I don’t feel so embarrased as I used to feel when I was diagnosed 13 years ago.
    My nephew (aged 9) suffers from FA and it’s heartbreaking seeing how his illness and his inability to do things are making progress.

  2. `Cettina says:

    Hi,
    I hàve FA and am a writer too. I’m almost finished with my my latest books, but it’s taking forever becouse of FA. My eyesite is weird now along with my coordination. My struggles are similar to yours, no thanks to FA. I thought I would tell you about “Selènium from Yeast” supplement I take daily that reduces my fatigue and helps my speech. It’s not overwhelming, but it helps. I can tell the difference. Nice talking with you. Write me if you like.

    Jett

  3. Karina Jeronimides says:

    I also have FA, and yes, it makes me sad to look at old photos, and to see how in a span of only five years, my posture has degenerated. I also teach, and thanks to our exponentially growing technology, after grad school, I never had to contend with the fact that I couldn’t write on a chalkboard. I spent hours creating power-points for my classes to project on a screen. Since my voice was becoming more unclear, my aim was to limit the amount of questions by perfecting and obsessing over my written presentations. I also took as many classes as possible to learn how to teach online, in the event that my FA would prevent me from leaving my house. My power-points where extremely helpful for online teaching, but suddenly it was required that a voice accompany those power-points. A speech therapist helped me learn strategies to maximize my speech, but I’m nowhere near perfect. And now my eyesight is getting worse really fast. The good news is that I still have a job, and that my students put up with me lovingly.

    • Frankie Perazzola says:

      Wow! Thank you for sharing. This is an incredible story! Your students sound awesome as your perspective is refreshing !

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