Fall is magical. Inspirational, even. If you’re lucky enough to live somewhere with lots of trees, you get to look outside each day and see the green leaves fade to gold, orange, yellow, red, and brown over the course of a few weeks, before they all fall to the ground. I love watching the transformation happen.
As a writer, if I say I’m “inspired,” it usually means I’m opening Google Docs on my phone throughout the day to write poetry and songs. This month, I wrote some haiku about Fall and a poem called November Days & Nights. But I also wrote a couple songs, one of which I wanted to share and discuss in this post.
Thought-provoking quote
One of my FA (Friedreich’s Ataxia) friends, Kelly, uses social media to spread awareness and encourage people. She recently shared one of her favorite quotes: “Softness opens doors that force cannot move.” I immediately started to consider how this statement relates to my life. [And before you continue reading, just wondering, what are YOUR thoughts on it?]
It reminds me of another quote: “You catch more flies with honey than with vinegar.” You receive more help and sympathy if you’re kind and humble vs. being arrogant and hateful. “Honey” equates to “softness” here.
Others that come to mind: “If you love someone, let them go.” and “You can take a horse to water, but you can’t make it drink.”
There’s actually not much that force CAN accomplish (outside of the gym). You can’t force someone to believe in God, or trust you, or chase an ambition, or call their new stepfather “Dad.” With most things most of the time, people have free will to make their own choices. Which reminds me of yet another quote…”The only person you can control is yourself.“
[Devil’s Advocate SN: There are a few exceptions. For instance, you CAN control people through fear – a child afraid of punishment, an employee afraid of getting fired.]
Relating it to spasticity
I have dealt with FA symptoms like impaired hand-eye coordination, weak ankles, fatigue, and falling for 10+ years. But a more recent issue – maybe the last 2-5 years – is spasticity in my legs. Basically, it is difficult for me to control when my muscles seize/flex vs. relax. It’s much worse if I’m cold. Also, I get leg spasms when I become restless – for instance, after sitting on the couch watching TV for hours, or if I’m tired and my body is fighting to stay awake. I either have to get up and start moving about or “distract my brain” to make it stop. [Reading a book or looking at my phone doesn’t work, but writing in a journal or drawing does. Go figure.]
Due to my spasticity, I must take extra time in my movements. If I start acting frenzied and attempt to do a transfer, put on my clothes, etc. with a rushed or panicked mindset, I’m more likely to hurt myself (or the person helping me). So, if I’m struggling, here’s what I do:
- Stop everything
- Consciously relax every muscle in my body
- Take a deep, centering breath
- Say aloud or in my head, You can do this, Lily.
Most of the time, I get it right after that.
The quote Kelly shared applies to me figuratively AND literally. Being patient with myself and taking time to unclench my muscles (softness) allows me to do things (opens doors) that are impossible when I’m in a hurry and start uncontrollably hyperflexing (that force cannot move).
Inspired a song
I decided to write a song using the quote. It’s called We Ask Why?
Some lines relate to my struggles with FA. They may be literal, figurative, or both. Ex: “Staring at the mess I made/ Frustrated, I can’t explain.”
Another theme is fear/uncertainty about the future, which is especially true for a person with a progressive disability. Ex: “Well-acquainted with my fears/ Growing like a child every year.” Thankfully, there is ONE FDA-approved drug that helps FA symptoms. However, the benefits accrue slooowly over time. Hence this line: “I’m bad at waiting patiently.”
Many people who were blessed to be born without health issues would pity me and say I was dealt a bad hand in life. But I find beauty around me every day (or better yet, create it with art). Hence the line: “Thorny stems on roses ain’t fair.”
In theory, we can find peace organically, but life gets busy and we feel overwhelmed. So, we go to the store and buy a lip gloss or a candy bar that gives us a fleeting sense of happiness. Hence the line: “Maybe I should stop to smell them/ An enterprising businessman will sell them.”
My favorite line is “Stuck in a Chinese finger trap.” That is the best analogy for my spasticity with FA. The harder I try, the harder everything is. But when I stop trying and just let it be, everything works out.
The overall “point” of the song is to STRESS LESS and go with the flow. Hope you enjoy it and thanks for reading to the end 🙂
Retrospective Lily 
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