For people with ALS suffering in silence, it’s time to speak up

Back in middle school, I was taught that sound comprises three components: something to make the sound, something to transport the sound, and something to receive the sound. It’s been a while since I learned that, but I assume it’s still true.

The principle reminds me of a related statement that most people have heard: If a tree falls in the woods and there’s no one there to hear it, did it make a sound?

So where am I going with this? I’ve screamed inside without making an external sound. Certainly other ALS patients have experienced the same thing. We scream out from being tired, stressed, and frustrated. In response to an array of things that bother us, we sometimes display a demeanor that indicates our displeasure, but on the inside we’re exploding. We have our pet peeves just as most people do, and when they arise, we cry out on the inside only.

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Our screams reside where no one can hear them for a variety of reasons, including not wanting a caregiver to feel bad, not wanting to be characterized as a complainer, and not wanting to appear ungrateful. So we end up suffering in silence. It’s the proverbial rock and a hard place.

Screams, like falling trees in the woods, permeate my inner being every day. Things that hurt, things that irritate, things that agitate, and little things like getting food on the outside of my mouth and someone using a spoon or fork to scrape it off: All cause me to scream inside. But no one hears me.

Silly? Petty? Nitpicky? Yes, to those who are able to resolve their own idiosyncrasies. But for those who cannot, otherwise petty things are magnified tremendously. Everything becomes urgent, and everything that’s out of order morphs into a perceived crisis. Believe me, for people who cannot physically move, perception is indeed reality.

At the risk of butchering the tree or the metaphor, my attempt is to inform family members, caregivers, and the general population about the hidden dilemmas confronted by ALS victims. We scream on a daily basis, but our cries go unheard.

All this begs the question, why aren’t we heard? Well, to me it’s both a transmitter and a receptor problem. We patients don’t share our feelings, and caregivers don’t study us enough to be able to spot or anticipate an issue. It boils down to simple communication, doesn’t it?

In this particular situation, the solution lies with the transmitter, the patient. We must trust our caregivers enough to tell them exactly how we feel. We must trust that they’ll understand and stop doing what we don’t like, and that they’ll begin doing what pleases us and makes us feel better.

Many years ago, one of my students gave me a small plaque that read, “To teach is to learn.” Writing this particular column has taught me that I have to be more open about things that bother me, even the silly things. I just have to take the risk of quietly disclosing my feelings and stop screaming so much.

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