by Stuart Rakoff on Fri, 2014-01-10 13:34

Stuart Rakoff

I had the opportunity this week to attend a meeting sponsored by the local MDA chapter that featured a speaker on common ALS symptoms of speech loss, swallowing difficulties and other bulbar disasters. Two other PALS (persons with ALS) were there, and the three of us traded ideas and suggestions about technology and other ways to cope — of course using our various iPads, iPhones, portable amplifiers, whiteboards, notebooks and hand gestures. 

But what the three of us had most in common was our ability to laugh — at ourselves and at the silly situations in which we found ourselves.

I have started to carry a small 3-by-5 spiral notebook with me at all times. And a pen on a lanyard around my neck. So I am ready at any time to communicate my best one-liners and to have a permanent record of my witticisms. Looking back at the last few days’ scribblings I realize you needed to be there to get the humor. Most of these great one-liners have a very short shelf life.

Hmmm — who else has very short life expectancy?

But laughing with others is a great way to connect and to share understanding. PALS do not have to explain to each other what is happening to us.  A wink, a nod, a smile is often enough to communicate information that words alone could not convey as precisely.

I learned years ago that laughter also can be destructive — a way of distancing, putting-down or avoiding real concerns. I must admit I was good at using laughter as a weapon. But I was fortunate to come to understand that I was not acting responsibly by using humor in that way, not helping myself or people around me get to happiness or peaceful lives. I was just antagonizing them and making myself a sad clown.

So what distinguishes “good” humor from “bad” humor? Clearly it’s intent, but how can that be made clearer? In our family we often “pick” at each other’s weak points with humor — they are almost stock jokes. But they are always delivered with an eye-twinkle and mostly followed with a hug.  They are often at our own expense. The tone is never biting or nasty. It's become a way of acknowledging our own foibles and strange habits — without rancor or intent to embarrass.

That’s the same way a room full of PALS can often be hilarious about the strange behaviors our disease produces. The way we talk, move around and perform most of our daily activities is certainly far enough from “normal” to cause folks to take notice. And when we PALS see it in others, it just puts our own struggle in perspective. And from that perspective, humor is an appropriate way to view our own shortcomings. It places them in a human context and reinforces the bonds that join us — PALS and others — all together.

Thurber wrote, “Humor is emotional chaos remembered in tranquility.” Sounds right to me.

This blog originally was posted by Stuart Rakoff on Nov. 8, 2013, as Laughter.

About the Author

My name is Stuart Rakoff. I am 69 years old and live in Reston, Va. In the summer of 2012, I was diagnosed wtih ALS. There is nothing in my family or health history to explain why I have this disease. I started writing my blog, Drinking Through a Straw — My Journey with ALS, as a way to help me articulate to myself a strategy for coping with my situation. As I shared these brief writings with family and friends, they urged me to share them more widely, so I began publishing them at I hope these writings will stimulate a discussion of the subjects I raise, and I encourage your comments.

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