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Living with ALS: The comforting, and not so comforting, power of words

Written By | Feb 11, 2018

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CHARLOTTE, NC, February 11, 2018: An interesting subject recently arose among several friends and acquaintances that is important to be addressed. It has to do with what to say to someone who is experiencing a traumatic phase in their life such as a divorce, serious accident, unexpected disease, loss of a job or death in the family to mention a few.

Such events can be among the most difficult challenges any of us face when trying to offer comfort to those in need.

So often in an effort to be compassionate, people say the exact wrong things a victim wants to hear, making it even more troublesome because the intentions are good.

The band of brothers

Years ago during my days of playing professional baseball, I had similar experiences though certainly not to the same level of despair as those mentioned above. Each day we would go out and compete for a limited number of jobs at a certain position knowing full well that we could be cut at any time.

The oxymoron of the situation was that the guys we competed against were among our closest friends. We shared tips about how best to play a position or what to do in any given situation and, yet, the objective was to beat him out for the job.

Whenever someone got released, there was always that uncomfortable moment when a player had to figure out just what to say while, at the same time, feeling a sense of relief that it was not you who got cut.

 The ironies of ALS, baseball, Lou Gherig and me 

 The same is true throughout life, only as we get older, events become more serious and difficult to handle. For years I would not attend funerals simply because I could never find the proper words to express my grief to those in despair.

In recent weeks, several friends have mentioned how often they had been hurt by words intended to comfort rather than add to their sorrow.

Situations vary and each event must be handled within its own context. Someone diagnosed with a terminal disease doesn’t require the same solace as those dealing with an untimely death, for example.

What not to say

There are certain phrases everyone should avoid when they are attempting to be supportive.

A person who has recently been given a limited time to live due to a particular disease does not want to hear, “Well my sister died of cancer, you know,” or “We struggled for five years before my husband died.”

People dealing with a personal struggle to survive, do not want to learn about the fate of others. They have enough to deal with without thinking about others’ battles.

Here’s a list of some things NOT to say when comforting someone you care about, even though everyone understands the intent.

“I know how you feel.”

Every tragic event is unique and though you may be able to empathize, there is no way to know how someone else will react. A better way to say the same thing might, “If you want to talk about how you are feeling, know that I am here for you.”

“(She/he) is in a better place”

No.  Not here.

“How are you holding up?”

Certainly, the person dealing with the problem is not going respond, “Fantastic, let’s do lunch next week.” The question puts the victim in the uncomfortable position of displaying a false face or even using denial to answer.

“Now you can move on with your life”

While death can seem like a relief, especially after a prolonged illness, the bereaved person still needs space and time to adjust to their new life.

“I don’t know what I would do if my [deceased’s relationship to the bereaved] died”

This is one of the worst things a person can say. Though it may be true, it is selfish to personalize such sorrow to the person in grief.

“At least it was quick so there wasn’t pain, so you had a chance to say goodbye”

Philosophical? Perhaps but another horrible thing to say during an extremely difficult time.

“Don’t worry, you’ll feel better soon”
“At least (she/he) had a long life, so many people die young”

Now that’s comforting, isn’t it?

“There’s a reason for everything”

This one belongs in the “Worst Things to Say” Hall of Fame.

“(She/he) was such a good person God wanted (her/him) to be with Him”
“(She/he) did what (she/he) came here to do and it was (her/his) time to go”
“You are in our thoughts and prayers”

While this is heartfelt and used to be meaningful, it has become so overused it has lost its impact. Best thing to do is find a better way to say the same thing in different words.

A better way to express yourself

Now here are a few better options however each person and situation is unique. Brevity is always a good choice.

“I’m sorry for your loss”

This too has become a cliché, but it is simple and direct and does convey empathy.

“(She/he) was a wonderful person”
“I will miss her/her”
“I love you”

This one may depend upon how close you are to the grieving person. That said, I was always told never end a day or say “good-bye” to someone close to you without telling them you love them. You never know for certain if there will be another time to say it.

“When you’re ready, I’d like to get together to learn more about what the person who died was like.”

And finally, when the time is appropriate, share a fond memory you have with a grieving person about their loved one. Those stories are intimate, unique and capture the essence and character of the person you are remembering.

Words are powerful things. Choose wisely and make them meaningful.


About the Author:

Bob Taylor is a veteran writer who has traveled throughout the world. Taylor was an award-winning television producer/reporter/anchor before focusing on writing about international events, people and cultures around the globe.

Taylor is founder of The Magellan Travel Club (

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Bob Taylor

Bob Taylor

Bob Taylor has been travel writer for more than three decades. Following a career as an award winning sports producer/anchor, Taylor’s media production business produced marketing presentations for Switzerland Tourism, Rail Europe, the Finnish Tourist Board, Japan Railways Group, the Swedish Travel & Tourism Council and the Swiss Travel System among others. He is founder of The Magellan Travel Club ( and his goal is to visit 100 countries or more during his lifetime.