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

Better communication between patient and caregiver is key

James Clingman avatar

by James Clingman |

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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.

Note: ALS News Today 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 other 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. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.


Mark Andrew Atwater avatar

Mark Andrew Atwater

I feel your pain, but in a different way. I have lost my voice and I look around and listen to people I am with and think of how I took my speaking for granted, and never dreaming that I would be in this situation. I find myself pounding my fist on the table in front of me in frustration because I know what I want to say, but can't say it. I have a boogie board that i use to communicate with and my friends and family understand this. I guess its my way of making myself heard. I pray for all of those out there that are dealing with ALS and know that you are not alone.

Mary Farson Collier avatar

Mary Farson Collier

Your post was incredible. Thank you so much for expressing your feelings. My brother lost the ability to speak normally occurred as one of his first symptoms. As time went on I saw how he began withdrawing slowly from all of us. His granddaughter sat with him while we all played cards in the other room and we were very loud. I know her presence was so comforting for him. I only wish I had read this before he died. Hopefully your thoughts will be read by many.


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