Fear Can Be a Double-edged Sword

“Fear takes control — fear of the unknown

Aware of what will hurt you

You’re prepared to remain this way

So sad yet safe with your afflictions

Afraid to start a brand new day.”

Those lyrics from the song “Fear (Of the Unknown)” by British alternative band Siouxsie and the Banshees are an apt characterization of my early struggles with ALS. I mourned every loss of function, yet managed to grow content with life on each lower plateau. But the flux — and associated peril — that tomorrow may bring frightened me immensely.

ALS remains an enigma of a disease. With no known cause, and such a heterogeneous patient mix and progression path, the worry that any action might exacerbate the condition made me timid. The notion of unsafe food and drink, imprudent activities, and unwise environments paralyzed me.

Then I stumbled upon this from Helen Keller: “Avoiding danger is no safer in the long run than outright exposure. The fearful are caught as often as the bold.” Armed with that wisdom, I reshaped my perspective. I began enjoying life again.

Shortly thereafter, I read Louisa May Alcott’s “Little Women.” A constant theme throughout the novel is the quest for self-improvement. Lessons for me abounded. Of particular impact was the character Amy’s utterance: “I’m not afraid of storms, for I’m learning how to sail my ship.” That became my ALS anthem.

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Each ALS storm is a lesson in sailing my ship. Every obstacle and challenge is an opportunity for personal development.

Every life is full of stormy weather. ALS foists more than its fair share upon its victims, even the occasional Category 5. It is my reaction to the storm’s onslaught that determines the aftermath.

I don’t blindly navigate my life into hurricanes. I attempt to be intentional, purposeful, and diligent in my behavior. Despite that, not every day can be smooth sailing. Life inevitably puts storms in our path. I seek to learn and build skills with each experience. In response, I find my edge, pursue growth, and set new expectations.

In the aftermath of any tempest, there are many sunny, clear days filled with idyllic sailing conditions. I strive to remain balanced. Most of all, I remind myself to enjoy the journey.

That said, trepidation still may rear its anxious head in the face of the unknown. Such was the case when I was recently forced into switching home health agencies for my daily care needs.

A few years back, I shared a poem about what all my aides do for me. Since then, their importance has grown substantially. Today, they are the greatest worldly source of vitality in my life.

Each agency thoroughly vets their caregivers. That process ensures that only skilled and compassionate folks are sent my way. However, until a routine is established, the ALS devil resides in the details, waiting to pounce. Hence, my anxiety.

My angst was heightened when, by virtue of a scheduling challenge, I was to be tended to by someone who was untrained in my care protocol. Not only would she not know my many idiosyncrasies, she would be unaware of the function and interaction of my various assistive devices. Fright night awaited.

When I was a youngster, upon being startled by the surprise appearance of a critter, my father would calm me by offering, “It’s more scared of you than you are of it.” Turns out, the same counterintuitive tension can be in play during aide and patient matchmaking.

Unbeknownst to me — and completely camouflaged by her professional aptitude and demeanor — my new aide was fearful of caring for someone with ALS, particularly at such an advanced stage. But when the agency explained it was her care or no care, she agreed to answer the call of duty.

As was shared after the fact, she felt tasked with knowing how everything is supposed to work, with a person whom she had never met, and who has many very special needs but can barely communicate. Initially, it was everything she was afraid of regarding having a condition like ALS, where common convention is tossed out the window and figuring out what to do is more art than science.

There’s no question it was hard for both of us at first. Thankfully, though, through shared perseverance and commitment, it got easier. The next day, while not turnkey, was a lot less difficult.

We overcame the same fear, although we defined it differently and approached it from opposite extremes. She was afraid I would be too much. I was frightened she wouldn’t be enough. In the end, a shared triumph was had.

Later, she thanked me for being part of her profound learning experience. Like Alcott wrote, and REO Speedwagon sang, we ended up “Ridin’ The Storm Out.”

Maybe Franklin Delano Roosevelt had it right: “The only thing we have to fear is fear itself.”

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